Well we have had some major changes over the last couple months. We have re-introduced small amounts of wheat slowly with digestive enzymes and only in whole organic forms. So far so good. We have not noticed any change in stools yet-I am not positive that Sully's yeast issues are not being affected though-we will keep a close eye on this.
Lochlan started early intervention preschool as well as an ABA/VB program (below is a video of him with one of his therapists). So far everything is going great. He is making huge progress and is talking all the time. He has started manding for things which is fantastic and it should start to cut down on some of the self injurious behavior. One thing that has not gotten better is his aggression and impulsive behavior. We have been off of the B-12 injections since September and I believe that it may have some relevance. Especially after reading Jenny McCarthy's Warrior Mom book-one mom mentioned that her son's aggression got better with the B-12 injections. I plan to start both boys on the B-12 injections again in January and will monitor any changes.
Sully is still doing well in school. We are having huge issues with compliance and mood regulation at home. I am going to start working on a home program for him. I can tell yeast is becoming a huge issue with him again as well. You can see it in his face. (dark circles, irritability, mood swings, aggression, over-emotional...) He is slowly becoming more emotional and obsessive again and I feel as though we are on a rip cord going up and down and up and down. We are constantly having to look at diet, supplements, environment-everything. He is so fragile that it takes almost nothing to overload him.
We are still doing the Super Nu Thera w/ p5p, zinc, sacchermyces boullardii, multi-flora specta probiotic, calcium, pro-C, AFp peptizyde, HNzyme prime, super calm, paragone, l-lysine, cod liver oil and all supplements are given in Aloe Vera juice to optimize absorption. I am considering changing from SNT to ASD plex as we continue to search for the best way to give amino acid support and anti-oxidants.
Friday, December 12, 2008
Autism, Alzheimer's and The truth about Flu shots and other vaccines
Flu shots are recommended to everyone over the age of 6 months included women who are pregnant. As most people, I was under the understanding that Flu shots were necessary to protect my unborn baby and I was doing what was right by getting one. That however is not true. Flu shots are poison in a syringe and these vaccines are not just negatively affecting our infants and children but they are poisoning our teenagers and elderly. More and more teenagers are being diagnosed with schizophrenia. How does this supposedly genetic illness become an epidemic? Likewise with Alzheimer's. We need to take the control back from the government for our health and put every suggestion/prescription by our physicians under a microscope. These so-called genetic illnesses are not genetic but instead environmentally induced. Causes are environmental toxins: heavy metal laced vaccines, air toxicity, genetically modified food, chemicals in our tupperware/cooking ware, and chemicals in our soaps and cosmetics to name a few. Below is a link to a site with information re: flu shots and Alzheimer's.
http://www.squidoo.com/FlushotsincreasesAlzheimers
I also wanted to post a link to a site re: vaccines. It is very informational and is a good resource for people who are wanting the truth about vaccines.
http://www.know-vaccines.org/didyouknow.html
http://www.squidoo.com/FlushotsincreasesAlzheimers
I also wanted to post a link to a site re: vaccines. It is very informational and is a good resource for people who are wanting the truth about vaccines.
http://www.know-vaccines.org/didyouknow.html
Thursday, December 11, 2008
Acetaminophen and Autism, "The medicated Child"
I have recently learned that acetaminophen aka "Tylenol" lowers the bodies antioxidants and can be very disastrous to infants/children. This angers me to the point of screaming as when my children were babies and we would go in for vaccinations the first thing the nurse asked was if we had given them any Tylenol. I have come across much research that suggests the use of Tylenol after the MMR is directly linked to autism spectrum disorder.
http://www.thoughtfulhouse.org/pr/180808.htm (the article is pasted below)
Press Release
Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder. Published in Autism. 2008 May;12(3):293-307
Increased use of acetaminophen / paracetamol (Tylenol, Panadol, etc.) after MMR vaccination is associated with a substantial increased risk of autism, report Schultz et al. from San Diego State University [Autism 2008;12:293-307]. In a study based on parental survey of 83 children with autism and 80 developmentally normal controls, use of acetaminophen after MMR was higher in children with autism vs. controls. There was a similar effect for ibuprofen use after MMR, although this involved smaller numbers (ibuprofen use was historically less prevalent), and the differences between cases and controls is not significant.
The authors’ hypothesis is that previous studies supporting or rejecting an association between MMR and autism have failed to take differences in acetaminophen use between the case and control groups (at around the time of MMR) into account. While this is a reasonable hypothesis, the design chosen to investigate it is inadequate, as it does not allow separate analyses of the roles of acetaminophen and MMR. Nonetheless, the study allows one hypothesis to be examined in part. It is possible that acetaminophen use is neither necessary nor sufficient to cause autism, but that its use in a relevant time-frame acts as a marker for children who are at risk of adverse response to MMR; this leads to some testable predictions.
The first is that children with autism are at greater risk of side-effects following MMR. The second is that at least some such side-effects might be responsive to therapeutic doses of acetaminophen. A third prediction is that if adverse response to MMR is associated with general ill health (as one might expect from experience of these children), and if MMR-adverse response is the ‘real’ causal factor in any observed association with autism, then general ill health prior to MMR will also be associated with autism. Finally, as children whose autism is apparently associated with MMR tend to have a later/regressive onset after a period of normal development, it might predict that the effect of acetaminophen as a marker of increased risk would be particularly strong in children with regressive onset. All of these predictions are supported by the data. The authors found that children with autism had significantly more post-MMR sequelae than controls, and that some such responses are likely to prompt acetaminophen use. There were higher levels of illness prior to MMR in children with autism, and the consequent risk of acetaminophen use was particularly high in the regressive group.
Two issues argue against a role for acetaminophen use as a marker of MMR adverse response: low risk associated with ibuprofen use appears to indicate a specific association with acetaminophen, rather than adverse response to MMR per se, however, overall numbers of ibuprofen use were too small to draw conclusions about this. Additionally, when the analysis was confined to children who suffered an adverse reaction, the likelihood of acetaminophen use was even higher than in the full sample. Again, this suggests that adverse response alone is not a sufficient predictor of autism. However, there may be differences in the severity or duration of the reaction between cases and controls – e.g. the worse the MMR reaction, the greater the chances of acetaminophen use, which would explain both the differences in acetaminophen use and in autism risk between the groups.
A further caution should also be highlighted. In addition to the design issue outlined earlier, the selection of cases and controls (partly from websites generally ‘sympathetic’ to the notion of an autism-MMR link) may have resulted in selection bias that inflates the differences between cases and controls in a direction supportive of the MMR-autism link. Whether this would systematically skew the apparent role of acetaminophen use is not clear.
Design issues aside, the findings are consistent with clinical experience and parental stories, that “my autistic child was ill when vaccinated with MMR”, “my child had an adverse reaction to MMR vaccine”, and “my child had an adverse reaction to MMR vaccine and, shortly after, suffered regressive autism”.References:
Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder: the results of a parent survey. Autism 2008;12:293-307
My children lived on tylenol the first years of life due to unexplained GI virus, ear infections and all the other viral illnesses the doctors recommended tylenol for. It saddens me greatly to think that I continued to overload their system with vaccines and then when they were fighting the worst I lowered the bodies ability to fight with tylenol. I urge everyone to pass along this info to their families and friends as we are being mislead by our doctors.
Free Radicals Can Damage Brain Cells
Reduced levels of antioxidants, such as glutathione, would increase the level of oxidative stress. Oxidative stress occurs when antioxidants are not able to clear the body of free radicals, which can damage cells in the brain, gastrointestinal tract, and immune system.
"[Our findings] suggest that these kids would be more sensitive to an environmental exposure and would be less likely to detox from heavy metals," says Dr. James, who is the study's lead author.
Exposure to heavy metals, such as the mercury preservative that was commonly used in children's vaccines until recently, has long been suspected as a trigger for autism in genetically susceptible children.
Most research, however, has failed to confirm this link, and in 2004, the Institute of Medicine issued a report stating that it did not believe that vaccines contributed to the development of autism.
Not everyone agreed with that conclusion, however. Laura Bono, chairwoman of the National Autism Association, and the parent of an autistic child, believes vaccines play some sort of role in the development of autism and says the new study's findings would seem to support a link.
"These are children that are more vulnerable, that don't quite detox the way the rest of us do," says Bono.
Dr. James did not look at the vaccine question for the current study. She says that autism is believed to have a genetic basis, but that it "takes an environmental trigger to bring out the genetics."
http://www.nyp.org/news/health/050413.html
"The Medicated Child"
I found this program from frontline and it doesn't pertain to autism but I thought it was worth including. I don't understand how they can recommend treating children with drugs that have not been approved to use on children. Even our dr. has suggested the use of pharmacueticals that have not been fully tested or approved on children. We have no clue what the long term affects are. This program really makes you think about what drugs you give your children.
http://www.pbs.org/wgbh/pages/frontline/medicatedchild/
http://www.thoughtfulhouse.org/pr/180808.htm (the article is pasted below)
Press Release
Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder. Published in Autism. 2008 May;12(3):293-307
Increased use of acetaminophen / paracetamol (Tylenol, Panadol, etc.) after MMR vaccination is associated with a substantial increased risk of autism, report Schultz et al. from San Diego State University [Autism 2008;12:293-307]. In a study based on parental survey of 83 children with autism and 80 developmentally normal controls, use of acetaminophen after MMR was higher in children with autism vs. controls. There was a similar effect for ibuprofen use after MMR, although this involved smaller numbers (ibuprofen use was historically less prevalent), and the differences between cases and controls is not significant.
The authors’ hypothesis is that previous studies supporting or rejecting an association between MMR and autism have failed to take differences in acetaminophen use between the case and control groups (at around the time of MMR) into account. While this is a reasonable hypothesis, the design chosen to investigate it is inadequate, as it does not allow separate analyses of the roles of acetaminophen and MMR. Nonetheless, the study allows one hypothesis to be examined in part. It is possible that acetaminophen use is neither necessary nor sufficient to cause autism, but that its use in a relevant time-frame acts as a marker for children who are at risk of adverse response to MMR; this leads to some testable predictions.
The first is that children with autism are at greater risk of side-effects following MMR. The second is that at least some such side-effects might be responsive to therapeutic doses of acetaminophen. A third prediction is that if adverse response to MMR is associated with general ill health (as one might expect from experience of these children), and if MMR-adverse response is the ‘real’ causal factor in any observed association with autism, then general ill health prior to MMR will also be associated with autism. Finally, as children whose autism is apparently associated with MMR tend to have a later/regressive onset after a period of normal development, it might predict that the effect of acetaminophen as a marker of increased risk would be particularly strong in children with regressive onset. All of these predictions are supported by the data. The authors found that children with autism had significantly more post-MMR sequelae than controls, and that some such responses are likely to prompt acetaminophen use. There were higher levels of illness prior to MMR in children with autism, and the consequent risk of acetaminophen use was particularly high in the regressive group.
Two issues argue against a role for acetaminophen use as a marker of MMR adverse response: low risk associated with ibuprofen use appears to indicate a specific association with acetaminophen, rather than adverse response to MMR per se, however, overall numbers of ibuprofen use were too small to draw conclusions about this. Additionally, when the analysis was confined to children who suffered an adverse reaction, the likelihood of acetaminophen use was even higher than in the full sample. Again, this suggests that adverse response alone is not a sufficient predictor of autism. However, there may be differences in the severity or duration of the reaction between cases and controls – e.g. the worse the MMR reaction, the greater the chances of acetaminophen use, which would explain both the differences in acetaminophen use and in autism risk between the groups.
A further caution should also be highlighted. In addition to the design issue outlined earlier, the selection of cases and controls (partly from websites generally ‘sympathetic’ to the notion of an autism-MMR link) may have resulted in selection bias that inflates the differences between cases and controls in a direction supportive of the MMR-autism link. Whether this would systematically skew the apparent role of acetaminophen use is not clear.
Design issues aside, the findings are consistent with clinical experience and parental stories, that “my autistic child was ill when vaccinated with MMR”, “my child had an adverse reaction to MMR vaccine”, and “my child had an adverse reaction to MMR vaccine and, shortly after, suffered regressive autism”.References:
Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder: the results of a parent survey. Autism 2008;12:293-307
My children lived on tylenol the first years of life due to unexplained GI virus, ear infections and all the other viral illnesses the doctors recommended tylenol for. It saddens me greatly to think that I continued to overload their system with vaccines and then when they were fighting the worst I lowered the bodies ability to fight with tylenol. I urge everyone to pass along this info to their families and friends as we are being mislead by our doctors.
Free Radicals Can Damage Brain Cells
Reduced levels of antioxidants, such as glutathione, would increase the level of oxidative stress. Oxidative stress occurs when antioxidants are not able to clear the body of free radicals, which can damage cells in the brain, gastrointestinal tract, and immune system.
"[Our findings] suggest that these kids would be more sensitive to an environmental exposure and would be less likely to detox from heavy metals," says Dr. James, who is the study's lead author.
Exposure to heavy metals, such as the mercury preservative that was commonly used in children's vaccines until recently, has long been suspected as a trigger for autism in genetically susceptible children.
Most research, however, has failed to confirm this link, and in 2004, the Institute of Medicine issued a report stating that it did not believe that vaccines contributed to the development of autism.
Not everyone agreed with that conclusion, however. Laura Bono, chairwoman of the National Autism Association, and the parent of an autistic child, believes vaccines play some sort of role in the development of autism and says the new study's findings would seem to support a link.
"These are children that are more vulnerable, that don't quite detox the way the rest of us do," says Bono.
Dr. James did not look at the vaccine question for the current study. She says that autism is believed to have a genetic basis, but that it "takes an environmental trigger to bring out the genetics."
http://www.nyp.org/news/health/050413.html
"The Medicated Child"
I found this program from frontline and it doesn't pertain to autism but I thought it was worth including. I don't understand how they can recommend treating children with drugs that have not been approved to use on children. Even our dr. has suggested the use of pharmacueticals that have not been fully tested or approved on children. We have no clue what the long term affects are. This program really makes you think about what drugs you give your children.
http://www.pbs.org/wgbh/pages/frontline/medicatedchild/
Thursday, October 9, 2008
Info on Oxidative Stress and Autism
Oxidative stress is what makes Autism neuro-degenerative. Until we had the boys ONE tests done with Genova Diagnostics I had never heard of oxidative stress before. Oxidative stress is what causes autism to have a window of time for recovery. This is a link to a paper done on oxidative stress and autism.
Abstract
Autism is a severe developmental disorder with poorly understood etiology. Oxidative stress in autism has been studied at the membrane
level and also by measuring products of lipid peroxidation, detoxifying agents (such as glutathione), and antioxidants involved in the defense
system against reactive oxygen species (ROS). Lipid peroxidation markers are elevated in autism, indicating that oxidative stress is increased
in this disease. Levels of major antioxidant serum proteins, namely transferrin (iron-binding protein) and ceruloplasmin (copper-binding
protein), are decreased in children with autism. There is a positive correlation between reduced levels of these proteins and loss of previously
acquired language skills in children with autism. The alterations in ceruloplasmin and transferrin levels may lead to abnormal iron and copper
metabolism in autism. The membrane phospholipids, the prime target of ROS, are also altered in autism. The levels of phosphatidylethanolamine
(PE) are decreased, and phosphatidylserine (PS) levels are increased in the erythrocyte membrane of children with autism as compared to
their unaffected siblings. Several studies have suggested alterations in the activities of antioxidant enzymes such as superoxide dismutase,
glutathione peroxidase, and catalase in autism. Additionally, altered glutathione levels and homocysteine/methionine metabolism, increased
inflammation, excitotoxicity, as well as mitochondrial and immune dysfunction have been suggested in autism. Furthermore, environmental
and genetic factors may increase vulnerability to oxidative stress in autism. Taken together, these studies suggest increased oxidative stress
in autism that may contribute to the development of this disease. A mechanism linking oxidative stress with membrane lipid abnormalities,
inflammation, aberrant immune response, impaired energy metabolism and excitotoxicity, leading to clinical symptoms and pathogenesis of
autism is proposed.
© 2006 Elsevier Ireland Ltd. All rights reserved.
For the complete article:
http://www.safeminds.org/research/library/oxidative-stress-in-autism.pdf
This article also talks about mitochondrial dysfunction (which both of my boys have) and its relation to oxidative stress. Please take some time and read this complete article as it is crucial to recovery.
The following powerpoint is from the autismOne conference in 2007 and it talks about the use of Metallothionein, chelation, glutathione, alpha-lipoic acid and some vit/min supplements in treating the oxidative stress.
http://72.14.205.104/search?q=cache:CZAI80n6LXoJ:www.autismone.org/uploads/2007/William%2520Walsh%2520AO%25202007%2520presentation.ppt+antioxidant%2Btherapy%2Bautism&hl=en&ct=clnk&cd=1&gl=us
Many families with children on the spectrum are struggling to keep afloat financially and DAN! practioners do not accept insurance. So we as parents find ourselves playing parent and doctor, therapist and teacher. I have been researching antioxidant treatment and therapies for about 2-3 months now and I have a plan -at least for my boys. One antioxidant that I keep running across and it is available in capsule form is alpha-lipoic acid. This is available from kirkman labs and you can also find it in some combo supplements as well. To me it seems like a good place to start and we will see how the boys do on it. The only problem is that you really need testing to keep track of the oxidative stress. That can be very very costly. We will begin the alpha lipoic acid in a week or two and we will consider doing some tests in a couple months.
I have also ran across some supplements that we are going to try. We will be trying the Behavior Balance and the Pro-C from autism coach.http://www.autismcoach.com/Behavior%20Balance.htm I will let you know when we start them and what results we are seeing. The Pro-C contains lipoic acid, glutathione (reduced), and other antioxidants. I am really excited to start this and will be also supplementing with additional lipoic acid from kirkmans.
Other great sites to check out:
Re: Metallothionein http://www.healing-arts.org/children/mtpromotion.htm#nutrient
http://autismchangingtomorrow.wordpress.com/2008/01/27/evidence-supporting-nutritional-supplements-in-autism-treatment/
A great tool to screen for PDD and severity:
http://www.childbrain.com/pddassess.html
TONS OF THE LATEST INFO:
AutismOne Conference 2008 Powerpoints: (need powerpoint viewer to view)
http://autismone.org/download2008.cfm\
http://www.autism.com/treatable/adams_biomed_summary.pdf
http://justaskdrmike.com/
http://www.icdrc.org/documents/Mitoandautism2008.pdf
http://www.nourishinghope.com/nourishing_hope_blog/2007/03/vitamins_minera.html
One last point for this post. Looking back there is so much I could have done during pregnancy that I was oblivious to. I have included a fantastic powerpoint link to providing a healthy environment inside and out of the womb.
http://www.autism.com/danwebcast/presentations/boston2005--ohara.pdf
I will post an updated supplement regimen and updates as soon as I receive the products.
Abstract
Autism is a severe developmental disorder with poorly understood etiology. Oxidative stress in autism has been studied at the membrane
level and also by measuring products of lipid peroxidation, detoxifying agents (such as glutathione), and antioxidants involved in the defense
system against reactive oxygen species (ROS). Lipid peroxidation markers are elevated in autism, indicating that oxidative stress is increased
in this disease. Levels of major antioxidant serum proteins, namely transferrin (iron-binding protein) and ceruloplasmin (copper-binding
protein), are decreased in children with autism. There is a positive correlation between reduced levels of these proteins and loss of previously
acquired language skills in children with autism. The alterations in ceruloplasmin and transferrin levels may lead to abnormal iron and copper
metabolism in autism. The membrane phospholipids, the prime target of ROS, are also altered in autism. The levels of phosphatidylethanolamine
(PE) are decreased, and phosphatidylserine (PS) levels are increased in the erythrocyte membrane of children with autism as compared to
their unaffected siblings. Several studies have suggested alterations in the activities of antioxidant enzymes such as superoxide dismutase,
glutathione peroxidase, and catalase in autism. Additionally, altered glutathione levels and homocysteine/methionine metabolism, increased
inflammation, excitotoxicity, as well as mitochondrial and immune dysfunction have been suggested in autism. Furthermore, environmental
and genetic factors may increase vulnerability to oxidative stress in autism. Taken together, these studies suggest increased oxidative stress
in autism that may contribute to the development of this disease. A mechanism linking oxidative stress with membrane lipid abnormalities,
inflammation, aberrant immune response, impaired energy metabolism and excitotoxicity, leading to clinical symptoms and pathogenesis of
autism is proposed.
© 2006 Elsevier Ireland Ltd. All rights reserved.
For the complete article:
http://www.safeminds.org/research/library/oxidative-stress-in-autism.pdf
This article also talks about mitochondrial dysfunction (which both of my boys have) and its relation to oxidative stress. Please take some time and read this complete article as it is crucial to recovery.
The following powerpoint is from the autismOne conference in 2007 and it talks about the use of Metallothionein, chelation, glutathione, alpha-lipoic acid and some vit/min supplements in treating the oxidative stress.
http://72.14.205.104/search?q=cache:CZAI80n6LXoJ:www.autismone.org/uploads/2007/William%2520Walsh%2520AO%25202007%2520presentation.ppt+antioxidant%2Btherapy%2Bautism&hl=en&ct=clnk&cd=1&gl=us
Many families with children on the spectrum are struggling to keep afloat financially and DAN! practioners do not accept insurance. So we as parents find ourselves playing parent and doctor, therapist and teacher. I have been researching antioxidant treatment and therapies for about 2-3 months now and I have a plan -at least for my boys. One antioxidant that I keep running across and it is available in capsule form is alpha-lipoic acid. This is available from kirkman labs and you can also find it in some combo supplements as well. To me it seems like a good place to start and we will see how the boys do on it. The only problem is that you really need testing to keep track of the oxidative stress. That can be very very costly. We will begin the alpha lipoic acid in a week or two and we will consider doing some tests in a couple months.
I have also ran across some supplements that we are going to try. We will be trying the Behavior Balance and the Pro-C from autism coach.http://www.autismcoach.com/Behavior%20Balance.htm I will let you know when we start them and what results we are seeing. The Pro-C contains lipoic acid, glutathione (reduced), and other antioxidants. I am really excited to start this and will be also supplementing with additional lipoic acid from kirkmans.
Other great sites to check out:
Re: Metallothionein http://www.healing-arts.org/children/mtpromotion.htm#nutrient
http://autismchangingtomorrow.wordpress.com/2008/01/27/evidence-supporting-nutritional-supplements-in-autism-treatment/
A great tool to screen for PDD and severity:
http://www.childbrain.com/pddassess.html
TONS OF THE LATEST INFO:
AutismOne Conference 2008 Powerpoints: (need powerpoint viewer to view)
http://autismone.org/download2008.cfm\
http://www.autism.com/treatable/adams_biomed_summary.pdf
http://justaskdrmike.com/
http://www.icdrc.org/documents/Mitoandautism2008.pdf
http://www.nourishinghope.com/nourishing_hope_blog/2007/03/vitamins_minera.html
One last point for this post. Looking back there is so much I could have done during pregnancy that I was oblivious to. I have included a fantastic powerpoint link to providing a healthy environment inside and out of the womb.
http://www.autism.com/danwebcast/presentations/boston2005--ohara.pdf
I will post an updated supplement regimen and updates as soon as I receive the products.
Sunday, October 5, 2008
Vaccines
I just wanted to post some info on vaccines as more and more people are hearing the dangers. There is a fantastic video by Mary Tocco,( http://articles.mercola.com/sites/articles/archive/2008/02/14/why-vaccines-aren-t-safe.aspx ) who is an independent researcher on vaccines for 25 years now. The video is lengthy but worth watching as it could spare your child/grandchild/niece/nephew from this countries number one epidemic- AUTISM. As many know both of my boys have been diagnosed on the autism spectrum and both of them were born healthy babies.(if you look at my first post How it all began... and you will see 2 pics of both boys- the picture during the first year they had so much life in their eyes and then the second pic was after they regressed their eyes became dull) If I could go back to when they were infants and not put their tiny bodies through the trauma of vaccines- I would in a heartbeat. But...it is too late and I have learned that what if's serve no purpose. This was God's plan.
The role vaccines play today is terrifying. Infants in Argentina are being used as guinea pigs for pneumonia vaccine manufacturer GlaxoSmithKline and 12 so far have already lost their lives.
(Article from Mercola.com)
At least 12 infants who were part of a clinical study to test a pneumonia vaccine have died in Argentina over the course of the past year.
The study was sponsored by GlaxoSmithKline, and uses children from poor families. According to the Argentine Federation of Health Professionals, the families are "pressured and forced into signing consent forms”.
The vaccine trial is still ongoing despite the denunciations.
For more on this article:
http://articles.mercola.com/sites/articles/archive/2008/07/31/12-babies-die-during-vaccine-trials-in-argentina.aspx
Autism in America has reached alarming numbers and the CDC as well as the federal vaccine court refuse to admit that Vaccines are the NUMBER ONE contributing factor. They acknowledge that vaccines have risks but they are "willing to sacrifice a few for the good of many." Dr. David Kirby (author of Evidence of Harm) believes that the more accurate number is 1 in 50 children will be diagnosed with a spectrum disorder. 1 in 50. The autism epidemic stomps any other "epidemic" affecting our world today, into the dirt. So why are the vaccines not being pulled off the shelves and why are drug manufacturers able to continue to produce more and more vaccines? Now more than ever we need to hold our future politicians accountable and demand that they answer these questions. My children are the living walking truth and every day is a struggle to heal them. We need to stand together as mothers, fathers, grandparents, aunts and uncles and demand that the govt not only fund research (research open to the vaccine link) but also fund the treatments that are needed to heal these kids as well as put a hold on all vaccines given until more honest and complete research is done. The research that has been done in the past is inaccurate because doctors do not file vaccine reaction complaints and the CDC's stats are completely incorrect. I know that my boys reactions were never turned into the vaccine court. Our pediatrician said it was not related. From the very first shot both my boys followed the same pattern. (it is documented in their medical records as well) They would receive the shots, within 48 hours develop a "viral" rash on their trunks, then within a day or two the diarrhea(mysterious GI virus) would start and within 4-5 days they would have ear infection and be on antibiotics. Every single time with both boys and our doctor passed off my questions as "babies get virus' all the time-they are constantly fighting something."
I believe that no children under the age of 2 should be vaccinated. There really is no need. I also believe that all the unnecessary vaccines should be halted such as the ear infection and chickenpox vaccines. No one has died from either so why do we think that we need a vaccine? They also need to "green" our vaccines by not giving combo vaccines or vaccines that contain heavy metals and unhealthy ingredients. I am not anti-vaccine. I know that vaccines serve their purpose but I do feel that the drug manufacturers have one thing in mind-MONEY. They don't care about anything else.
My goal is to help people to be informed. The more educated you are the better decision you will make. At the current vaccine schedule our children are the victims and the numbers will continue to rise until people realize that combo vaccines and unnecessary vaccines are harmful. I urge everyone to watch the Mary Tocco video (the first 15 min go in and out but if you let it play it gets better) and to really think about what we are putting in our bodies and how it affects us. Not only is autism on the rise but adhd, asthma and allergies are also skyrocketing. more info:http://www.4ahealing.com/ Please feel free to contact me with questions and I will continue to research and post.
The role vaccines play today is terrifying. Infants in Argentina are being used as guinea pigs for pneumonia vaccine manufacturer GlaxoSmithKline and 12 so far have already lost their lives.
(Article from Mercola.com)
At least 12 infants who were part of a clinical study to test a pneumonia vaccine have died in Argentina over the course of the past year.
The study was sponsored by GlaxoSmithKline, and uses children from poor families. According to the Argentine Federation of Health Professionals, the families are "pressured and forced into signing consent forms”.
The vaccine trial is still ongoing despite the denunciations.
For more on this article:
http://articles.mercola.com/sites/articles/archive/2008/07/31/12-babies-die-during-vaccine-trials-in-argentina.aspx
Autism in America has reached alarming numbers and the CDC as well as the federal vaccine court refuse to admit that Vaccines are the NUMBER ONE contributing factor. They acknowledge that vaccines have risks but they are "willing to sacrifice a few for the good of many." Dr. David Kirby (author of Evidence of Harm) believes that the more accurate number is 1 in 50 children will be diagnosed with a spectrum disorder. 1 in 50. The autism epidemic stomps any other "epidemic" affecting our world today, into the dirt. So why are the vaccines not being pulled off the shelves and why are drug manufacturers able to continue to produce more and more vaccines? Now more than ever we need to hold our future politicians accountable and demand that they answer these questions. My children are the living walking truth and every day is a struggle to heal them. We need to stand together as mothers, fathers, grandparents, aunts and uncles and demand that the govt not only fund research (research open to the vaccine link) but also fund the treatments that are needed to heal these kids as well as put a hold on all vaccines given until more honest and complete research is done. The research that has been done in the past is inaccurate because doctors do not file vaccine reaction complaints and the CDC's stats are completely incorrect. I know that my boys reactions were never turned into the vaccine court. Our pediatrician said it was not related. From the very first shot both my boys followed the same pattern. (it is documented in their medical records as well) They would receive the shots, within 48 hours develop a "viral" rash on their trunks, then within a day or two the diarrhea(mysterious GI virus) would start and within 4-5 days they would have ear infection and be on antibiotics. Every single time with both boys and our doctor passed off my questions as "babies get virus' all the time-they are constantly fighting something."
I believe that no children under the age of 2 should be vaccinated. There really is no need. I also believe that all the unnecessary vaccines should be halted such as the ear infection and chickenpox vaccines. No one has died from either so why do we think that we need a vaccine? They also need to "green" our vaccines by not giving combo vaccines or vaccines that contain heavy metals and unhealthy ingredients. I am not anti-vaccine. I know that vaccines serve their purpose but I do feel that the drug manufacturers have one thing in mind-MONEY. They don't care about anything else.
My goal is to help people to be informed. The more educated you are the better decision you will make. At the current vaccine schedule our children are the victims and the numbers will continue to rise until people realize that combo vaccines and unnecessary vaccines are harmful. I urge everyone to watch the Mary Tocco video (the first 15 min go in and out but if you let it play it gets better) and to really think about what we are putting in our bodies and how it affects us. Not only is autism on the rise but adhd, asthma and allergies are also skyrocketing. more info:http://www.4ahealing.com/ Please feel free to contact me with questions and I will continue to research and post.
Friday, September 5, 2008
Update
The past couple months have been literally a whirlwind for us. Cody has been in and out of town quite a bit, Sully has started school and we've been to at least half a dozen appointments. Everyday is jam packed and I am really hoping that October will be calmer. Since my last blog we have stopped the LDN as we did a month trial and were not getting any consistent results. We had thought that it was improving Sully's attention and eating but it was short lived and very inconsistent.I cannot say that we will not try it again but at this time it is not worth the time or money. We have successfully changed over to kirkman products and I am hoping that in time we will see more improvement in behavior and overall health.
The boys' current supplement regimen is:
Super Nu Thera P5P12.5mg
CoEnzyme Q10
Reduced L-Glutathione
Calcium
Pro-bio Gold Probiotics
Zinc
EnZym-Complete Dpp-IV II
Colostrum (Lochlan)
Methyl-B 12 injections
Gaba
I am still working out the doses but I really feel like we are on the right track in healing the gut. I may add more antioxidants as this is one of the boys' biggest issues. I have read a research paper on the effects of oxidative stress in autism and the outcome terrifies me if we are unable to get a handle on it. The paper in short explains that children with autism are often viewed as gifted but by the time they are adults they are mentally slow. This is because of high levels of oxidative stress cause autism to be neuro-degenerative disorder. Very scary. I am doing my research on antioxidant therapies and pray that God will give us direction as we try to heal our boys.
We recently made a trip to Rockford, Illinois to see a Pediatric Neurologist regarding the boys: Sully's history of febrile seizures, Lochlan's SI behavior and awkward eye movements as well as to have a neuro on our team to aid our efforts. We will be going back for testing (EEG, MRI, Genetics testing and some other lab work) towards the end of the month. I am not sure what information we will get out of this, but I wanted to make sure that there is nothing we are missing.
We also made a trip to Iowa City for a feeding evaluation at the Center for Disabilities and Development. We will be implementing a new feeding schedule for a period of 3 weeks and after that time we will discuss whether or not intensive treatment is necessary. Our new schedule will be 30 minute meals (timer) and 15 minute snacks. We will also be giving 2-3 preferred foods and one piece of non-preferred. If they try or eat the non-preferred food then they are rewarded with a highly preferred food that is reserved for that occasion. Lochlan and I will be spending 15 minutes every day just getting lip contact with non-preferred foods as well.
Lochlan also had an appointment with the behavior clinic. I had the great pleasure of meeting Dr. David Wacker who is a wonderful man with a very big heart for kids with difficult/self injurious behavior. I believe that it is divine intervention that we were able to see him and that his ideas are just what we're looking for. We will be doing a functional assessment for 6 mo and then we will consult to see where to go from there. It is a miracle that we even got an appointment with him as their behavior clinic is booked out until February. He is also going to get me in contact with an internist (I believe) who is an Aspergers guru. I am very excited to have such knowledgeable and caring people on our team. Dr. Wacker believes that if we can improve Lochlan's communication skills then the SI behavior will decrease. I agree with this whole hearted and my gut tells me that we are on the right track.
So how's the toileting you ask? Awesome. Once Cody and I took the pressure off Sully and instead just encouraged him-he started going poop in the toilet. And the icing on the cake is that Lochlan is also now almost potty trained (all but the pooping.) I think that I will just let nature take its course and encourage him to try-he is young and being able to stay dry during the day is a huge accomplishment in itself. He even has started to let us know when he needs to go. We are very proud of them!
Sully has successfully completed one day of preschool with no meltdowns!!!! Many who know us personally know that last year was a complete nightmare. Meltdowns every day after school for hours, fighting to get him dressed to get to school on time, peeling him from my leg and wrestling to get him in the car after. Every day for 7months-until we pulled him for a couple months. This year his teachers are doing more to help him in the transition times as well as giving him more sensory breaks during the day. I think having class in the afternoon is helping as well because there is no anxiety in the AM about having to get going to school. One down-many, many to go. We will continue to pray that it goes well and that he is emotionally able to handle all 4 days.
Lochlan is still waiting on ABA. We are however going forward with the evaluations to transition him to the school setting. I am a little uneasy about having other people deal with his self injurious behavior but I am praying about it and know that God will give us wisdom to make the right decisions. Of course we will take ABA over Special ed preschool as the projected outcome of ABA is more promising.
I am very excited as we have finished the basement/therapy room enough to use it while we finish completing it. So here are a few pics of the boys in their therapy swing..jpg)
Lastly I wanted to share a couple prayers for those affected by autism.
'Let us hold unswervingly to the hope we profess, for he who promised is faithful.'(Hebrews 10:23, NIV)
PARENT’S PRAYER:Dear God,There are days when I have hope, and days when I do not. Many days are difficult and I become overwhelmed. My affections are often turned away from you in days such as that and I wonder if you will bring any good out of autism. The pure heartbreak of the disappointment alone is enough to bruise me in heart. In times like that, Lord, I am most in need of your touch. I need you to help rekindle my affections toward you. It is in those days that I most need you to renew my ability to believe in your promises for me and for _____________. Therefore, Lord, I choose to allow you to penetrate my battered emotions and bring healing to my broken heart. Set my feet back on course in days that I have gone astray. Do not allow Satan to take advantage of my weaknesses in such times. Instead, stir the gift of faith that you have deposited within me! Cause me to be able to be strong and take heart with a new passion and hope. You are faithful, God. You have never failed. My trust and hope are in you alone, who is well able to accomplish all that you have promised!In Jesus’ Name,Amen
FAMILY’S / FRIEND’S PRAYER:Dear God,There are days when the __________ family has hope, and days when they do not. Many days are difficult and they become overwhelmed. Their affections can easily be turned away from you in days such as that and they must wonder if you will bring any good out of autism. The pure heartbreak of the disappointment alone is enough to bruise them in heart. In times like that, Lord, they are most in need of your touch. They need you to help rekindle their affections toward you. It is in those days that they most need you to renew their ability to believe in your promises for them and for [child’s name]. Therefore, Lord, help them to choose to allow you to penetrate their battered emotions and bring healing to their broken hearts. Set their feet back on course in days that they have gone astray. Do not allow Satan to take advantage of their weaknesses in such times. Instead, stir the gift of faith that you have deposited within them! Cause them to be able to be strong and take heart with a new passion and hope. You are faithful, God. You have never failed. Help them to put their trust and hope in you alone, who is well able to accomplish all that you have promised!In Jesus’ Name,Amen
The boys' current supplement regimen is:
Super Nu Thera P5P12.5mg
CoEnzyme Q10
Reduced L-Glutathione
Calcium
Pro-bio Gold Probiotics
Zinc
EnZym-Complete Dpp-IV II
Colostrum (Lochlan)
Methyl-B 12 injections
Gaba
I am still working out the doses but I really feel like we are on the right track in healing the gut. I may add more antioxidants as this is one of the boys' biggest issues. I have read a research paper on the effects of oxidative stress in autism and the outcome terrifies me if we are unable to get a handle on it. The paper in short explains that children with autism are often viewed as gifted but by the time they are adults they are mentally slow. This is because of high levels of oxidative stress cause autism to be neuro-degenerative disorder. Very scary. I am doing my research on antioxidant therapies and pray that God will give us direction as we try to heal our boys.
We recently made a trip to Rockford, Illinois to see a Pediatric Neurologist regarding the boys: Sully's history of febrile seizures, Lochlan's SI behavior and awkward eye movements as well as to have a neuro on our team to aid our efforts. We will be going back for testing (EEG, MRI, Genetics testing and some other lab work) towards the end of the month. I am not sure what information we will get out of this, but I wanted to make sure that there is nothing we are missing.
We also made a trip to Iowa City for a feeding evaluation at the Center for Disabilities and Development. We will be implementing a new feeding schedule for a period of 3 weeks and after that time we will discuss whether or not intensive treatment is necessary. Our new schedule will be 30 minute meals (timer) and 15 minute snacks. We will also be giving 2-3 preferred foods and one piece of non-preferred. If they try or eat the non-preferred food then they are rewarded with a highly preferred food that is reserved for that occasion. Lochlan and I will be spending 15 minutes every day just getting lip contact with non-preferred foods as well.
Lochlan also had an appointment with the behavior clinic. I had the great pleasure of meeting Dr. David Wacker who is a wonderful man with a very big heart for kids with difficult/self injurious behavior. I believe that it is divine intervention that we were able to see him and that his ideas are just what we're looking for. We will be doing a functional assessment for 6 mo and then we will consult to see where to go from there. It is a miracle that we even got an appointment with him as their behavior clinic is booked out until February. He is also going to get me in contact with an internist (I believe) who is an Aspergers guru. I am very excited to have such knowledgeable and caring people on our team. Dr. Wacker believes that if we can improve Lochlan's communication skills then the SI behavior will decrease. I agree with this whole hearted and my gut tells me that we are on the right track.
So how's the toileting you ask? Awesome. Once Cody and I took the pressure off Sully and instead just encouraged him-he started going poop in the toilet. And the icing on the cake is that Lochlan is also now almost potty trained (all but the pooping.) I think that I will just let nature take its course and encourage him to try-he is young and being able to stay dry during the day is a huge accomplishment in itself. He even has started to let us know when he needs to go. We are very proud of them!
Sully has successfully completed one day of preschool with no meltdowns!!!! Many who know us personally know that last year was a complete nightmare. Meltdowns every day after school for hours, fighting to get him dressed to get to school on time, peeling him from my leg and wrestling to get him in the car after. Every day for 7months-until we pulled him for a couple months. This year his teachers are doing more to help him in the transition times as well as giving him more sensory breaks during the day. I think having class in the afternoon is helping as well because there is no anxiety in the AM about having to get going to school. One down-many, many to go. We will continue to pray that it goes well and that he is emotionally able to handle all 4 days.
Lochlan is still waiting on ABA. We are however going forward with the evaluations to transition him to the school setting. I am a little uneasy about having other people deal with his self injurious behavior but I am praying about it and know that God will give us wisdom to make the right decisions. Of course we will take ABA over Special ed preschool as the projected outcome of ABA is more promising.
I am very excited as we have finished the basement/therapy room enough to use it while we finish completing it. So here are a few pics of the boys in their therapy swing.
.jpg)
Lastly I wanted to share a couple prayers for those affected by autism.
'Let us hold unswervingly to the hope we profess, for he who promised is faithful.'(Hebrews 10:23, NIV)
PARENT’S PRAYER:Dear God,There are days when I have hope, and days when I do not. Many days are difficult and I become overwhelmed. My affections are often turned away from you in days such as that and I wonder if you will bring any good out of autism. The pure heartbreak of the disappointment alone is enough to bruise me in heart. In times like that, Lord, I am most in need of your touch. I need you to help rekindle my affections toward you. It is in those days that I most need you to renew my ability to believe in your promises for me and for _____________. Therefore, Lord, I choose to allow you to penetrate my battered emotions and bring healing to my broken heart. Set my feet back on course in days that I have gone astray. Do not allow Satan to take advantage of my weaknesses in such times. Instead, stir the gift of faith that you have deposited within me! Cause me to be able to be strong and take heart with a new passion and hope. You are faithful, God. You have never failed. My trust and hope are in you alone, who is well able to accomplish all that you have promised!In Jesus’ Name,Amen
FAMILY’S / FRIEND’S PRAYER:Dear God,There are days when the __________ family has hope, and days when they do not. Many days are difficult and they become overwhelmed. Their affections can easily be turned away from you in days such as that and they must wonder if you will bring any good out of autism. The pure heartbreak of the disappointment alone is enough to bruise them in heart. In times like that, Lord, they are most in need of your touch. They need you to help rekindle their affections toward you. It is in those days that they most need you to renew their ability to believe in your promises for them and for [child’s name]. Therefore, Lord, help them to choose to allow you to penetrate their battered emotions and bring healing to their broken hearts. Set their feet back on course in days that they have gone astray. Do not allow Satan to take advantage of their weaknesses in such times. Instead, stir the gift of faith that you have deposited within them! Cause them to be able to be strong and take heart with a new passion and hope. You are faithful, God. You have never failed. Help them to put their trust and hope in you alone, who is well able to accomplish all that you have promised!In Jesus’ Name,Amen
Tuesday, July 29, 2008
Potty Training, TiMe OuT, LDN and Birthday Adventures
Well... we are finally starting to see some results with the LDN. Sully the past 4 days has been eating good as well as trying new foods. He actually seems to have the attention and stamina to finish a meal-and dessert on occasion. ITS FANTASTIC! He is also easier to redirect and his verbal stimming seems to be getting less intense. We have also jumped some near impossible hurdles within the couple weeks.
1. Sully turned 4 on the 17th of July-the same month he stopped napping. So with nap time behind us I figured that the diapers should be too. The beginning of last week I told Sully that since he is 4 now, he no longer can wear diapers because its the rules. (unless at bedtime) He accepted it fairly well at first although as long as he had on some kind of underwear he would just pee in them. So off came the underwear. If he could stay dry all morning then he could have the underwear on in the afternoon as long as he continued to go in the toilet. This method seemed to work really the best. He didn't care for the pee running down his leg and so with that and 4 days of practice-Sully is now potty trained. Well what about the pooping you ask-still working on it really. He is holding it in and very reluctant to go. But we continue to encourage and know that there will be accidents and just try our best to be supportive. That's really all you can do.
2. We made our first trip to the Omaha zoo. The boys did awesome! No meltdowns, no sensory overload, no issues with crowds. We all really enjoyed it and it was a truly perfect day.
3. Sully's 3rd huge hurdle is time out. Discipline is something that we have struggled with since the beginning. No matter what we try he either out-smarts us or out-lasts us. The kid is genius. However. I have been watching Super nanny religiously-just trying to get any advice that might actually work with my kids. Sully has been watching with me the last couple weeks and I have explained to him that the children are misbehaving and that Jo Jo has come to help the parents. He watched so intently-at first I wasn't sure if it was a good idea-he could possibly pick up bad behaviors. I am not sure if it's watching Jo Jo or the LDN but my typically defiant 4 year old actually sat in time out for his entire 4 minutes!!!! I was in disbelief! And he did it again today! He also apologized without any prompting at the end of his time.
Lochlan has not had such great results form the LDN-not yet anyhow. His language is booming!!!! (I believe from the B12-Thank you Lord!) and he is now requesting with 2-word phrases. Typically one of the words is please but he is making huge, HUGE gains. The downside to the LDN is that it can possibly cause headaches and Lochlan's SI behavior is on the increase again. We definitely aren't where we were but it is increasing more every day and his eating is also steadily getting worse. He is hardly eating anything. I will try to do some research on how to handle the possible side affect(headaches) and will post what I find soon.
1. Sully turned 4 on the 17th of July-the same month he stopped napping. So with nap time behind us I figured that the diapers should be too. The beginning of last week I told Sully that since he is 4 now, he no longer can wear diapers because its the rules. (unless at bedtime) He accepted it fairly well at first although as long as he had on some kind of underwear he would just pee in them. So off came the underwear. If he could stay dry all morning then he could have the underwear on in the afternoon as long as he continued to go in the toilet. This method seemed to work really the best. He didn't care for the pee running down his leg and so with that and 4 days of practice-Sully is now potty trained. Well what about the pooping you ask-still working on it really. He is holding it in and very reluctant to go. But we continue to encourage and know that there will be accidents and just try our best to be supportive. That's really all you can do.
2. We made our first trip to the Omaha zoo. The boys did awesome! No meltdowns, no sensory overload, no issues with crowds. We all really enjoyed it and it was a truly perfect day.
3. Sully's 3rd huge hurdle is time out. Discipline is something that we have struggled with since the beginning. No matter what we try he either out-smarts us or out-lasts us. The kid is genius. However. I have been watching Super nanny religiously-just trying to get any advice that might actually work with my kids. Sully has been watching with me the last couple weeks and I have explained to him that the children are misbehaving and that Jo Jo has come to help the parents. He watched so intently-at first I wasn't sure if it was a good idea-he could possibly pick up bad behaviors. I am not sure if it's watching Jo Jo or the LDN but my typically defiant 4 year old actually sat in time out for his entire 4 minutes!!!! I was in disbelief! And he did it again today! He also apologized without any prompting at the end of his time.
Lochlan has not had such great results form the LDN-not yet anyhow. His language is booming!!!! (I believe from the B12-Thank you Lord!) and he is now requesting with 2-word phrases. Typically one of the words is please but he is making huge, HUGE gains. The downside to the LDN is that it can possibly cause headaches and Lochlan's SI behavior is on the increase again. We definitely aren't where we were but it is increasing more every day and his eating is also steadily getting worse. He is hardly eating anything. I will try to do some research on how to handle the possible side affect(headaches) and will post what I find soon.
Friday, July 25, 2008
LDN and B-12 Update
Well folks....we have been on the LDN for about 2 weeks now. I haven't noticed any huge response so far. (not like the B-12) The boys' OT thinks that they are a little more mellow but it is really hard to tell. Sully's verbal stimming might be down a bit but we haven't seen anything amazing so far. We are committed to one month and then I will determine if we will be continuing. Lochlan is still doing amazing on the B-12. A few days ago he handed me his napkin and said "trash" (spontaneously), I was amazed-that is not something that he had been taught-it was learned indirectly. He is also saying phrases like "I-had-it!" and "it's mine." His speech therapist today thought that he echoed "lochlan say bye-bye" today (word for word as a phrase) So we are seeing some really great things with the B-12. Next month we are planning on adding in folinic acid I believe. I am also planning on starting the boys on kirkman labs products-Super Nu Thera, enzymes, probiotics, L-glutathione, zinc, omega support and possibly gaba. I will post more soon on our plan of action and the progress with the LDN.
Wednesday, July 16, 2008
LDN....
Low-dose Naltrexone....aka....LDN
This pharmaceutical drug is definitely getting some attention in the autism community. Today was our boys' first day on this medication and we are praying for amazing results. The drug naltrexone is actually an opioid antagonist and in small doses it also boosts the immune system amongst other positive things. Research says that it could help mood regulation, self injurious behavior, obsessive behavior as well as improve attention to name a few. The boys are both getting 1.5mg in a trans dermal cream that I rub on them sometime between 9pm-midnight.
http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf
The above website is more info on the use of low dose naltrexone from a Dr. McCandless who has done extensive research on this topic. Today was our first day and I will try to keep to be vigilant with posting updates as we continue on this journey.
This pharmaceutical drug is definitely getting some attention in the autism community. Today was our boys' first day on this medication and we are praying for amazing results. The drug naltrexone is actually an opioid antagonist and in small doses it also boosts the immune system amongst other positive things. Research says that it could help mood regulation, self injurious behavior, obsessive behavior as well as improve attention to name a few. The boys are both getting 1.5mg in a trans dermal cream that I rub on them sometime between 9pm-midnight.
http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf
The above website is more info on the use of low dose naltrexone from a Dr. McCandless who has done extensive research on this topic. Today was our first day and I will try to keep to be vigilant with posting updates as we continue on this journey.
Saturday, July 12, 2008
Summertime!
Well, things have really been quite busy for us. Summer is in full swing as is the hot humid weather. The boys are fighting more than ever and Cody and I question our sanity daily. We have added at least three therapy appointments each week and I am starting to feel as though all we do is race to and from appointments.
Lochlan started speech therapy twice a week at childserve and is making remarkable progress daily. Only 6 mo ago he had scored at a 9-12 mo age for receptive language. I worked with him a couple days ago doing mass trials and he was able to identify 18 out of 30 cards of household objects without prompts (that is discriminating between two cards). The other 12 he identified with only 1 or 2 prompts!!! I couldn't believe it! The B-12 injections are doing more than we even dreamed of! Lochlan continues to increase his spontaneous language as well. He is even consistently greeting familiar people. We have also found that he is responding to therapeutic doses of ibuprofen which means that his head banging is probably from pain attenuation. We are in the works to see a neurologist (for both boys actually) in Rockford, Illinois. 
We are going to get scans done of the boys and discuss some of the neurological issues. We are also planning to take Lochlan to see a Dr. here in the metro who does Cranial massage. The greatest news- he has decreased the amount of times he is engaging in self injurious behavior by over 70%!!!
One of our three added appointments was enrolling Sully in horse therapy, which he loves. They begin with grooming and putting the saddle on the pony. Then they ride for a bit, play a couple of games and then they have an interactive story all while in the saddle! Once they are done riding, they groom again and remove the saddle. So far we have only had one lesson and he is really looking forward to another with "Harley".(the pony)
Lochlan started speech therapy twice a week at childserve and is making remarkable progress daily. Only 6 mo ago he had scored at a 9-12 mo age for receptive language. I worked with him a couple days ago doing mass trials and he was able to identify 18 out of 30 cards of household objects without prompts (that is discriminating between two cards). The other 12 he identified with only 1 or 2 prompts!!! I couldn't believe it! The B-12 injections are doing more than we even dreamed of! Lochlan continues to increase his spontaneous language as well. He is even consistently greeting familiar people. We have also found that he is responding to therapeutic doses of ibuprofen which means that his head banging is probably from pain attenuation. We are in the works to see a neurologist (for both boys actually) in Rockford, Illinois. 
We are going to get scans done of the boys and discuss some of the neurological issues. We are also planning to take Lochlan to see a Dr. here in the metro who does Cranial massage. The greatest news- he has decreased the amount of times he is engaging in self injurious behavior by over 70%!!!Lochlan is also spontaneously saying certain routine phrases such as... Bye Car!, Sully Where-Are-You?, Oh-no What-happened?, Ummm-delicious!, I-got-it! and a few others. Huge, huge gains for him in the language department and we are so very proud of him. We have also discovered that he will need to have braces/supports for his ankles. When he was about 15mo we noticed that his feet rolled and turned inward. I mentioned something to our pediatrician at the time and she told me to see the guy at Junior Shoe world and a good shoe would fix the problem. Well- I think it was a ploy to get me to buy their shoes because it did not do the trick....and now it will take even longer to correct! I am really glad to have childserve on board and I know that they will take care of us 
the right way. Feeding continues to be a battle and currently Lochlan is eating meat, dry/crunchy snack foods, fruit and baby food. Doesn't amount to much. Luckily he is getting his necessary caloric intake from formula.
the right way. Feeding continues to be a battle and currently Lochlan is eating meat, dry/crunchy snack foods, fruit and baby food. Doesn't amount to much. Luckily he is getting his necessary caloric intake from formula. (Lochlan stimming on wheels of car)
Sully continues to amaze us daily with his witty comments and smooth manipulation. That boy could talk the shirt right off of your back it he wanted to. Put all that with his irresistible smile and you have a recipe for disaster!
I have come to the conclusion that ears are purely decoration and serve no functional purpose......at least in our house. The concept of compliance we struggle with daily. No matter what I do or say he will be defiant and sooner or later he then whittles me away with all of his words. Then there's nothing left. ( I am seriously working on a compliance program for him at home! Any advice don't hesitate to comment!)
So-I have immersed myself in the book Autism 24/7 in hopes of some kind of direction. It is a great book so far with lots of ideas but he seems to be always one step ahead. So I will continue to pray for guidance as we battle day in and day out. Two weeks ago Sully decided that he no longer needed naps. This is certainly something that I still need, but with him going to school in the fall in the afternoon, I decided it was best to let nature take its course. I will have to say that there is a real grieving process that comes with the termination of nap time. The once quiet and tranquil measly hours are no longer quiet and tranquil, instead they are full of train whistles, airplanes flying and the endless talking about bugs. By the end of the day I am more frazzled than ever! Sully continues to verbally stim a lot and is very emotional and obsessive. We are waiting on our DAN! Dr. for guidance (supplemental) as she needed to do more research before we made a plan of action. Hopefully her call will come soon. Eating is still a daily battle and like his brother he is limiting down to almost nothing. I praise God that he will at least drink his formula, which provides him with the necessary nutrition for the day.
One of our three added appointments was enrolling Sully in horse therapy, which he loves. They begin with grooming and putting the saddle on the pony. Then they ride for a bit, play a couple of games and then they have an interactive story all while in the saddle! Once they are done riding, they groom again and remove the saddle. So far we have only had one lesson and he is really looking forward to another with "Harley".(the pony)
Thursday, June 26, 2008
Faith Check
Today was one of those days that God uses life experiences to give us a faith check. This morning the boys and I got up and around. At about eleven o'clock we headed for the Center for Disabilities and Development in Iowa City. Lochlan had an appointment with a developmental pediatrician regarding his autism and self injurious behaviors. Now I know better than to go to any appointment without reinforcement, but I honestly thought maybe it would be good for them to see how difficult it really is right now managing their behaviors. Lets just say that it was more than either one of us bargained for. At one point the Dr. left the room so I could try to get Sully under control before we continued. The boys were behaving terribly and I could barely keep up with both of them in the tiny 8x8 room. I could have cried. I listened as she continued to tell me that his behavior is not uncommon in children with autism and that at some point we may need to use medication for him. I looked at my precious boys and my heart just sank. She continued on to tell me that kids with Asperger's are typically nervous and anxious kids and that Sully too may need to be medicated to be able to cope. It has been over 2 years since I first heard the words "I think your son may have autism". You would think that by now it would have sunk in. So how can my heart sink so low every time another professional comes to the same conclusion? I know that my sweet little sons have autism, I think what gets me is I can't ever seem to do enough to fix it. So she went on to say that she would refer Lochlan to the Behavioral Psychologist's waiting list (yes another list!) and supports the speech and ABA therapy we are trying to get into place. She also recommended we get some respite for both boys. With that we packed our things and loaded back into the car. I was so very disappointed that there was no medical cause for his SI behavior and that it was in short just autism. We got back on the interstate and headed for home. Along the way the skies clouded and storms moved in just to the north of I-80. Sully was so fascinated by the clouds and as they swirled across the sky it was as if God was painting. The sky was so beautiful. 
I explained to Sully that God made this and it is all beautiful. Even in storms there can be beauty. This really got me thinking about the last week. It has been so ugly at our house with behaviors and meltdowns but if you look at what God is doing with our hearts in this time it is simply beautiful. If you know me you know that I like to be organized and in control. There is no control with autism-not for me anyhow, and I am constantly depending on my Lord for patience and guidance. I have come to turn to him when I feel so crazy and out of control and amazingly he puts me back together so we can get through another day.
I explained to Sully that God made this and it is all beautiful. Even in storms there can be beauty. This really got me thinking about the last week. It has been so ugly at our house with behaviors and meltdowns but if you look at what God is doing with our hearts in this time it is simply beautiful. If you know me you know that I like to be organized and in control. There is no control with autism-not for me anyhow, and I am constantly depending on my Lord for patience and guidance. I have come to turn to him when I feel so crazy and out of control and amazingly he puts me back together so we can get through another day.
Tuesday, June 17, 2008
Update 06.18.08
Well the B-12 injections have been an adventure all in themselves. I was having trouble injecting into the fatty tissue (because the boys have none!) and so we decided to give them every other day at a slightly decreased dose. It did the trick and we are no longer excreting B-12 shortly after administering the injection. Lochlan continues to spontaneous greet people and it is so awesome to hear his little voice speaking clear words. He is still in crisis mode most of the day and our SI behavior has been continuing to increase over the last week. It seems as though everyday the SI behavior gets more in grained into his being and it has become a reaction to almost anything that goes against his agenda. Today I watched in horror as he spent 38 minutes trying his hardest to hurt himself because he was upset. He wasn't looking to me for a reaction he was just kept getting madder and madder because what he was doing wasn't enough. We continue to pray for ABA and I have finally found someone to come and provide speech therapy. Let me tell you it is nearly impossible to get any therapy without at least a 6 mo waiting list!!! Lochlan has also been displaying more typical autistic traits and also more frequently; odd eye gaze, awkward finger movements, spinning and rolling on the ground, fixating on wheels. Sully continues to verbally stim and is more obsessive than ever. He will get fixated on bugs every time he sees one (which is very often this time of year) and sometimes it is a couple hours before we can redirect him.
On the supplement side-we have increased the Sacchermyces Boulardii (probiotic) to help kill yeast (I am actually seeing it in the stools). I just hope it will be enough and we will not have to move onto prescription anti-fungals. They are both continuing on Cod Liver Oil, Calcium, Zinc, Enzymes and Lochlan is on Colostrum. Last Friday we received their test results for the O.N.E (Optimal Nutrition Evaluation) test we sent in the end of May. I couldn't believe the results. Neither boy had any B-12 present (the labs were collected before we started the injections and 4 days after holding all other supplements). They both have GI dysfunction, mitochondrial dysfunction, malabsorbtion issues as well as their Citric Acid Cycle is really suffering. Their oxidative stress was elevated, as was the yeast and bacterial dysbiosis and In short- the boys are toxic, they aren't able to absorb the nutrients that they get and they have some mitochondrial (cellular) dysfunction. Not sure what the plan of action is yet but I am scheduled to have a phone conference on Tuesday with our DAN! Dr. To be continued....
On the supplement side-we have increased the Sacchermyces Boulardii (probiotic) to help kill yeast (I am actually seeing it in the stools). I just hope it will be enough and we will not have to move onto prescription anti-fungals. They are both continuing on Cod Liver Oil, Calcium, Zinc, Enzymes and Lochlan is on Colostrum. Last Friday we received their test results for the O.N.E (Optimal Nutrition Evaluation) test we sent in the end of May. I couldn't believe the results. Neither boy had any B-12 present (the labs were collected before we started the injections and 4 days after holding all other supplements). They both have GI dysfunction, mitochondrial dysfunction, malabsorbtion issues as well as their Citric Acid Cycle is really suffering. Their oxidative stress was elevated, as was the yeast and bacterial dysbiosis and In short- the boys are toxic, they aren't able to absorb the nutrients that they get and they have some mitochondrial (cellular) dysfunction. Not sure what the plan of action is yet but I am scheduled to have a phone conference on Tuesday with our DAN! Dr. To be continued....
Sully rides a BiKe!
Learning to pedal a tricycle has been a right of passage for centuries. Sully being the outdoorsy boy he is-LOVES to ride his four wheeler, tractor and tricycle. However he never had the strength or coordination to pedal. Cody and I have tried to teach him how to keep his feet on the pedals and push but he continued to struggle. I mentioned it to his OT and she has worked with him over the last 6mo. He has made huge gains in this area and 2 weeks ago at therapy he climbed on a bike with training wheels and to our amazement began to ride! With all that's going on at home-Cody finishing up his pilot's license and Lochlan in crisis mode-it slipped my mind to tell Cody of this huge accomplishment. (Terrible I know) So at Toys R Us the other day we went and looked at the bikes for Sully's birthday. Cody pulled one down for him to sit on and to his surprise Sully climbed on and began pedaling. Cody was simply stunned. The grin on this face went from ear to ear. He was so proud of his boy. Such a simple task to most, but to a boy with Asperger's and SPD a near-impossible feat.
Tuesday, June 10, 2008
Coordinating services and B-12 Update
Insurance waiver, title 19, case managers, coordinating services, qualifying waiver services, respite service providers and endless miles of yellow tape. This is my life, my current lingo and my future to do lists for navigating through a waiver program. Despite all the yellow tape the waiver program is one of the best things about the state of Iowa. No matter what your income if your child meets certain criteria you could qualify for a waiver program that would waive your income and provide you with title 19 (medicaid) and other services pertaining to the child's needs. This means we will finally be getting some help in paying for Lochlan's treatment and we will be able to afford more treatment for him. Hallelujah! We will now be able to provide Lochlan with ABA Therapy (as soon as Homestead can coordinate the services), speech therapy, more OT and also respite(which means mom gets a BREAK!) Could it sound any sweeter? Luckily enough we have a great case manager who is just as passionate as we are in getting Lochlan the help he needs and deserves.
An update on the B-12 Injections
We have had 2 more injections since my last post and unfortunately I am unable to say that things continued to get better. I do believe that the B-12 is working-I am having some trouble injecting it into the fat.(the boys are soooo skinny Sully 33lbs Lochlan 26lbs) I noticed today just after I gave them the injection that both boys' urine was a slight tint of pink-which means they already excreted the extra that was to be absorbed over the next couple days. Aaarrgh! I will try to be even more careful the next time and will try again at an even smaller angle. Sully continues to verbally stim and it is causing some real trouble especially at meal times. He is still very non compliant and seems to avoid following directions with asking questions or justifying why he needs to continue doing what he is doing. He has also started to tell me that I am "irritatin' him"..which doesn't go over very well and he ends up apoligizing to both Jesus and Mommy for being so mouthy! He is becoming more rigid every day and is now requesting bacon for every meal. Despite his chattiness at the table and unwillingness to eat what I have prepared for him, he is keeping weight thanks to the neocate junior. Hopefully soon we will get the results of his ONE (optimal nutrition evaluation) test so we can have some multi-vitamins compounded for him.
Lochlan had 2 really good days last week and then started slipping back into his crisis mode of falling apart and then engaging in self injurious behavior. He has also started to bang his foot on his chair and poke his eye when he is in a meltdown. We have had to put his helmet on him and then put him in his high chair with 5-point harness just to keep him safe. I am praying that the eye poking business stops as I have no idea how to intervene without giving physical contact. Currently we are just ignoring this behavior and monitoring it so he doesn't harm himself. It has only happened a couple of times thank goodness. On a good note...He is continuing to greet his dad and I and with "hi mommy!" and "hi daddy" spontaneously. He also spontaneously said "what happened" today, normally he would only echo this but today it was out of nowhere. He has been chattering more and more. Not much we can understand, he is even trying to vocalize when Sully is singing. He will move his little head back and forth and it is sooo sweet. Speaking of sweet-Lochlan has started to potty in the toilet before bath- he has done it twice now. I think he is just starting to figure the whole potty thing out. But....I will save our potty sagas for another post.
Iowa Walk Now for Autism! 2008
June 7th, 2008
This year was our first year to participate in the Walk Now for Autism! It was so exciting to be among so many friends and families pulling together to help our children. Thanks to everyone who donated money and time to walk with us. It was amazing! Here are a few pics from the walk. 
Friday, June 6, 2008
"Hi DaDdY!
"Hi Daddy!" It was the first time the words had ever come out of his mouth without prompting. Cody stood in the doorway in utter amazement. Lochlan looked up and upon seeing his daddy in the doorway greeted him. We looked at each other and started laughing. They were the sweetest words. Yesterday was the day after we gave the last injection. All day he was chattering his own language as well as spontaneously saying a few two word phrases. This is simply amazing considering as little as 2 weeks ago he would only say a two word phrase with prompts unless it was bye-bye, stop-it, let-go, or more-please. (these are words that Lochlan only says together and in his mind it is not two words together but only one word.) He even looked as if he was "present" all day! His eyes were engaging and alert. Normally he is in his own world and you may happen to be apart of it for a second and then he's gone. Yesterday was his best day yet. His occupational therapist told me she could just cry; he did so well. He played with play-doh for at least 5 minutes! He didn't stim on the cupboard doors and only stimmed on the room door a couple of times. It was a totally different kid. We still have not had a decrease in his self-injurous behavior but hopefully that will also start to get better. We definitely will be continuing the B-12 injections and will continue to monitor his progress along the way! 
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Lochlan with his new favorite toy-Thomas.
Sully is also getting injections and we have not seen such a huge impact on him as of yet. He is very verbal and his eye contact is fair to pretty good-most of the time. He continues to spend much time lining his cars up wherever they are and seems to get "stuck" on things quite frequently. He is our rigid one who thrives on schedule and sameness. We are going to create him a big picture schedule for at home so when he will know what's going on. He seems to have more trouble coping when we are not at home so I will also make sure I take his PEC schedule with us when we go.
Here he is lining up his new cars.
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Tuesday, June 3, 2008
B-12 Update
So far we have given 2 injections, 1 every third day. The first injection we didn't see much change. The second injection was given 2 days ago and Sully's must have gone into the muscle as he excreted the excess in his urine about 40 minutes after we administered it. He is really quite thin and I will have to give it a 10 degree angle-just under the skin. Lochlan's however went into the fatty tissue as he did not excrete the excess-it should be slowly released into the system over the course of the three days. We have noticed an increase in his spontaneous language as well as some 2 word requests- "more please"and "milk please". This is a huge accomplishment for him!!!
Finding JOY in the time of Trial
James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and COMPLETE, not lacking anything.
This scripture was the focus of my daily devotional the other day. It never ceases to amaze me how God reveals himself to me daily. I have never been a great bible reader but the past year and a half it has been a great comfort being reminded that God is right along side us. There are many times that I catch myself feeling overwhelmed and in despair over a situation. And every time I see the work of God and am reminded that it is all in his plan. We are just along for the ride and we need to place complete trust in him and know that even in trial we can find joy. Maybe not the joy that makes you jump up and down or hoot and holler but pure joy knowing that God believes you can handle it and feeling thankful that he knows you will be faithful even in this trial.
This past year we have run into waiting list upon waiting list. I have spent countless hours on the phone just to be told "I'm sorry but we have a waiting list for that service." The trend seems to be: hurry up so you can wait. As a mom, it is such a terrible feeling knowing your child is slipping and there is nothing more you can do.(that is except prayer-which I do a lot of!) We have been waiting to get Lochlan on a waiver that will provide ABA therapy as well as medicaid and respite services. I applied last november and we have been maneuvering through the red tape most of the winter. I was told in February that he was approved but now we have to wait for a service provider. The last couple months have been really rough at our house. Lochlan has been regressing terribly and we have not been able to anything more than OT and working with him at home. His frustration over not being able to communicate builds every day and he has been engaging in self injurous behavior increasingly. I have been feeling really down and desperate especially the last couple weeks. How would this fit into God's plan? Why should we have to sit and watch him slip further and further every day? Today I got a call from our service provider and they have assigned us a case manager. We are meeting tomorrow to get things moving with the waiver. I have never been so happy in my life! So whenever you face trials and I know every parent does remember that he's in charge and try to find joy in the midst as it was planned from the beginning and these trials will help you become the person he wants you to be.
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and COMPLETE, not lacking anything.
This scripture was the focus of my daily devotional the other day. It never ceases to amaze me how God reveals himself to me daily. I have never been a great bible reader but the past year and a half it has been a great comfort being reminded that God is right along side us. There are many times that I catch myself feeling overwhelmed and in despair over a situation. And every time I see the work of God and am reminded that it is all in his plan. We are just along for the ride and we need to place complete trust in him and know that even in trial we can find joy. Maybe not the joy that makes you jump up and down or hoot and holler but pure joy knowing that God believes you can handle it and feeling thankful that he knows you will be faithful even in this trial.
This past year we have run into waiting list upon waiting list. I have spent countless hours on the phone just to be told "I'm sorry but we have a waiting list for that service." The trend seems to be: hurry up so you can wait. As a mom, it is such a terrible feeling knowing your child is slipping and there is nothing more you can do.(that is except prayer-which I do a lot of!) We have been waiting to get Lochlan on a waiver that will provide ABA therapy as well as medicaid and respite services. I applied last november and we have been maneuvering through the red tape most of the winter. I was told in February that he was approved but now we have to wait for a service provider. The last couple months have been really rough at our house. Lochlan has been regressing terribly and we have not been able to anything more than OT and working with him at home. His frustration over not being able to communicate builds every day and he has been engaging in self injurous behavior increasingly. I have been feeling really down and desperate especially the last couple weeks. How would this fit into God's plan? Why should we have to sit and watch him slip further and further every day? Today I got a call from our service provider and they have assigned us a case manager. We are meeting tomorrow to get things moving with the waiver. I have never been so happy in my life! So whenever you face trials and I know every parent does remember that he's in charge and try to find joy in the midst as it was planned from the beginning and these trials will help you become the person he wants you to be.
Friday, May 30, 2008
DAN! Appt,Supplement change and Methyl B-12
Since going on the Gluten and Casein Free diet we have started seeing a DAN! Dr. in Omaha and are giving the boys supplements. We also take the boys to Occupational Therapy once a week. We are waiting for an insurance waiver to begin ABA therapy for Lochlan. The boys also get early intervention from our public school. By far the intervention with the biggest results has been diet changes and supplementation.
Last week we went to Omaha to our DAN! Dr. to do a supplement check and discuss Lochlan's steady increase in self-injurous behavior. We discontinued the Intrakid as now that we have added many other supplements it has begun to block some pathways. We also discontinued the vit C supplement as his stool analysis came back full of yeast (vit C can feed yeast). We decided to do a ONE (optimal nutrition evaluation) test from Genova labs for each boy to see what they are lacking and then have a pharmacy compound a multivitamin tailored to each boy's needs. The test was only 95.00 ea and in the long run would save us much money. We also decided it was time for B-12 injections as the boys were making little progress with the foot patches. It is just utterly amazing how such a tiny body and being exposed to the world for such a little time could be so toxic.(the vaccines play a huge role in toxicity) The plan is use the B-12 injections to raise the Glutathione levels and help them excrete the toxins. We also changed over to a Houston Lab enzyme called Trienza (a broad spectrum enzyme) as well as increase the amount of probiotics to get help get rid of yeast. Dr. Leann explained how at the recent DAN! conference it was said that enzymes and probiotics are so important to include even with the gfcf diet. I am also considering giving the specific carbohydrate diet (SCD) a chance as it will help decrease the yeast issue. I love how it feels to go to our DAN! Dr. and feel like we actually have a handle on things. For one day I feel like I know what I am doing and that we have a very specific plan.
The boys' current conditions (3 wks previously off supplements )and 2 days into new regimen including 1 B-12 injection:
Sully is verbally stimming most of the time and is not following directions. He is back acting like he doesn't even hear you. His eye contact is suffering and he is very anxious and mouthy. He is getting overstimulated very easily and the littlest noise or smell will set him off. He obsesses about bugs and it not easily redirected.
Lochlan spends most of his day stimming with our coat closet doors-opening and shutting.... He has very little spontaneous language (5-10 words) and his eye contact is also suffering greatly. He is upset most of the day as he has no way of communication and his first response is to be self injurous. (I do believe that the SI behavior is mostly behavioral and will continue until we can give him some mode of communication.) We did get a soft helmet for him so we can go out in public and still keep him safe. He is head banging and doing other SI (self-injurous) behavior some days more than 50 times per day. We are watching him slowly slip further and further into his own world. We are hoping the new regimen and the B-12 injections will stop this downward spiral and help bring him back to us.
The Methyl B-12 injections are to be given every third day. The first injections we gave to the boys while they were awake and they honestly didn't feel it.(thanks to the numbing creme and extremely short needle) Lochlan's first injection was on Wednesday of this week and yesterday he was a bit more fussy and clingy. Other than that there wasn't any change. Sully's first injection was yesterday and I will see how he responds today. For more info, testimony and great video footage of the results of the Methyl B-12 go to www.drneubrander.com. This helped us in our decision to administer injections.
Last week we went to Omaha to our DAN! Dr. to do a supplement check and discuss Lochlan's steady increase in self-injurous behavior. We discontinued the Intrakid as now that we have added many other supplements it has begun to block some pathways. We also discontinued the vit C supplement as his stool analysis came back full of yeast (vit C can feed yeast). We decided to do a ONE (optimal nutrition evaluation) test from Genova labs for each boy to see what they are lacking and then have a pharmacy compound a multivitamin tailored to each boy's needs. The test was only 95.00 ea and in the long run would save us much money. We also decided it was time for B-12 injections as the boys were making little progress with the foot patches. It is just utterly amazing how such a tiny body and being exposed to the world for such a little time could be so toxic.(the vaccines play a huge role in toxicity) The plan is use the B-12 injections to raise the Glutathione levels and help them excrete the toxins. We also changed over to a Houston Lab enzyme called Trienza (a broad spectrum enzyme) as well as increase the amount of probiotics to get help get rid of yeast. Dr. Leann explained how at the recent DAN! conference it was said that enzymes and probiotics are so important to include even with the gfcf diet. I am also considering giving the specific carbohydrate diet (SCD) a chance as it will help decrease the yeast issue. I love how it feels to go to our DAN! Dr. and feel like we actually have a handle on things. For one day I feel like I know what I am doing and that we have a very specific plan.
The boys' current conditions (3 wks previously off supplements )and 2 days into new regimen including 1 B-12 injection:
Sully is verbally stimming most of the time and is not following directions. He is back acting like he doesn't even hear you. His eye contact is suffering and he is very anxious and mouthy. He is getting overstimulated very easily and the littlest noise or smell will set him off. He obsesses about bugs and it not easily redirected.
Lochlan spends most of his day stimming with our coat closet doors-opening and shutting.... He has very little spontaneous language (5-10 words) and his eye contact is also suffering greatly. He is upset most of the day as he has no way of communication and his first response is to be self injurous. (I do believe that the SI behavior is mostly behavioral and will continue until we can give him some mode of communication.) We did get a soft helmet for him so we can go out in public and still keep him safe. He is head banging and doing other SI (self-injurous) behavior some days more than 50 times per day. We are watching him slowly slip further and further into his own world. We are hoping the new regimen and the B-12 injections will stop this downward spiral and help bring him back to us.
The Methyl B-12 injections are to be given every third day. The first injections we gave to the boys while they were awake and they honestly didn't feel it.(thanks to the numbing creme and extremely short needle) Lochlan's first injection was on Wednesday of this week and yesterday he was a bit more fussy and clingy. Other than that there wasn't any change. Sully's first injection was yesterday and I will see how he responds today. For more info, testimony and great video footage of the results of the Methyl B-12 go to www.drneubrander.com. This helped us in our decision to administer injections.
Thursday, May 29, 2008
How it all began....
When I think back to how this journey all began I can't help but wonder where along the way did everything begin to go so wrong.
Sully's Story:
Sully's Story:
My first pregnancy was pretty typical for the first 6 mo- morning sickness and terrible indigestion. I had preterm labor and was on medication to stop contractions. I didn't know it then but the medication my OB Dr. prescribed was not recommended for pregnancy and there was actually a warning from the FDA against using it for such purposes. The Dr. never disclosed this information to me and I trusted him. I was taking both Procardia and Terbutaline on a daily basis from 32 weeks gestation until delivery. I did get a flu shot that winter as well. Sully was born July of 2004, 10 days early. We were both given antibiotics during delivery and Sully received the typical newborn care at the hospital including a Vit.K injection. He was a very healthy baby and was a terrific nurser from the start. He did become jaundiced a bit after we were at home but it resolved itself with nursing. At 2 weeks we noticed blood in his stool and after many occurrences and many screaming hours with his abdomen hard as a rock we were told he was MSPI (milk soy protein intolerant) and had severe reflux. I would have to go on a very strict diet if I wanted to continue to nurse. Sully was also placed on medication for reflux.(Prevacid) I followed the diet religiously but the blood kept popping up every couple weeks. Sully received all the normal vaccines and after every vaccination he would get very sick with a "viral" rash, then diarrhea (GI virus) and then end up with an ear infection followed by a round of antibiotics. (This cycle repeated itself for the first 18mo of his life and his stools were either explosive runny or none at all.) He would just barely recover in time to get another round of vaccinations. At 6 mo Sully stopped gaining weight and was sick all the time. Our doctor told me I would have to bottle feed so we could keep track of the amount of milk he was taking. Sully shut down. He refused the bottle and after many tries we finally were forced to do Neocate formula in a bottle and try feeding him every 2 hours for 45 min until he finally gave in. He starved himself for 3 days. Finally he would take the formula but never at full strength-he would just projectile vomit. We struggled for 6 mo to get him to be able to keep the formula down. Our doctor never seemed to be worried about this and told us we needed to be more strict with him!
Can you believe that? Finally after his 1st birthday and weighing only 16 1/2 pounds we drove an hour to Omaha and admitted him to the Children's Hospital ER ourselves. He was diagnosed as failure to thrive and went through a battery of tests as well as a scope. That was just the beginning. Once at children's we saw a Pediatric GI Dr (which we had been waiting for months to get in to see) and she wanted to try to have him drink the feeding tube formula in a sippy cup before they put in a feeding tube the next morning. To our surprise he drank it and he loved it! We finally thought we were on to something. From that time he started to put on weight. Once we were back at home he had his 12 mo well child check and he received his MMR as well as a few other vaccines. It was between 12 and 18 months that we really lost our son to autism. He started awkward finger movement, blank staring, his language became only echo and his eye contact disappeared. Sully was always a very independent baby- he didn't want to be cuddled and rarely turned for his name. He never ever pointed at things and had terrible food aversions. By 18 mo he was very obsessive compulsive and didn't want to eat or drink anything but foods with milk. He would terrible meltdowns and would destroy everything in his path. He spent most of his time lining up his cars and falling apart if anyone interrupted him. 
Sully's pediatrician mentioned to me at 18 mo that she thought he should be evaluated for autism. The word hit me like a ton of bricks. How dare she even consider it. He was so smart and meticulous. How could he be autistic? We know he had some issues but to go as far as that? Everything we thought could be explained by his medical issues or experiences. It took me 9 mo, an eval from the local school system and countless hours on the Internet before it finally soaked in. Sully had autism. I immersed myself in books and the Internet. Searching for anything I could do to change this. There was so much information to sift through and so many options for treatment. How could I possibly know what to do? I focused on the medical issues he was experiencing and the more I looked the more I found. The idea that his body was full of toxins and they were affecting his growth and development made sense with what we were seeing for symptoms. I had come across some information on the gluten free casein free diet that had testimonies of promising results. So we decided to give it a shot. One mom even wrote a book how she essentially saved her second son from autism by following the GFCF diet (and other things too.) Once we removed the dairy a new set of problems surfaced with sensory processing disorder. I believe the milk proteins acted like a drug and that is why he was so disconnected and foggy all the time. And the journey to detox his system and find our son continues.
Can you believe that? Finally after his 1st birthday and weighing only 16 1/2 pounds we drove an hour to Omaha and admitted him to the Children's Hospital ER ourselves. He was diagnosed as failure to thrive and went through a battery of tests as well as a scope. That was just the beginning. Once at children's we saw a Pediatric GI Dr (which we had been waiting for months to get in to see) and she wanted to try to have him drink the feeding tube formula in a sippy cup before they put in a feeding tube the next morning. To our surprise he drank it and he loved it! We finally thought we were on to something. From that time he started to put on weight. Once we were back at home he had his 12 mo well child check and he received his MMR as well as a few other vaccines. It was between 12 and 18 months that we really lost our son to autism. He started awkward finger movement, blank staring, his language became only echo and his eye contact disappeared. Sully was always a very independent baby- he didn't want to be cuddled and rarely turned for his name. He never ever pointed at things and had terrible food aversions. By 18 mo he was very obsessive compulsive and didn't want to eat or drink anything but foods with milk. He would terrible meltdowns and would destroy everything in his path. He spent most of his time lining up his cars and falling apart if anyone interrupted him. 
Sully's pediatrician mentioned to me at 18 mo that she thought he should be evaluated for autism. The word hit me like a ton of bricks. How dare she even consider it. He was so smart and meticulous. How could he be autistic? We know he had some issues but to go as far as that? Everything we thought could be explained by his medical issues or experiences. It took me 9 mo, an eval from the local school system and countless hours on the Internet before it finally soaked in. Sully had autism. I immersed myself in books and the Internet. Searching for anything I could do to change this. There was so much information to sift through and so many options for treatment. How could I possibly know what to do? I focused on the medical issues he was experiencing and the more I looked the more I found. The idea that his body was full of toxins and they were affecting his growth and development made sense with what we were seeing for symptoms. I had come across some information on the gluten free casein free diet that had testimonies of promising results. So we decided to give it a shot. One mom even wrote a book how she essentially saved her second son from autism by following the GFCF diet (and other things too.) Once we removed the dairy a new set of problems surfaced with sensory processing disorder. I believe the milk proteins acted like a drug and that is why he was so disconnected and foggy all the time. And the journey to detox his system and find our son continues.Lochlan's Story:
We found out we were expecting our second child just before we took Sully to Omaha to admit him for failing to thrive(Sully was 12 mo old). We were excited to have another baby and had hoped that this baby wouldn't be so sick or fragile like Sully.
My pregnancy was similar-terrible pre-term labor, lots of medication (daily terbutaline and procardia from 28 weeks gestation on), 3 weeks of bed rest and a flu shot. I went in 2 times before we delivered in labor and they were able to stop it with medication. I delivered Lochlan at the beginning of 34 weeks. His heart rate was struggling so he was vacuumed out in the end and was having trouble breathing when he was born. (we were both given antibiotics during delivery as well) He was taken to the nursery immediately and once they had him stable he was given the routine newborn care. Lochlan never passed his meconium and at 48 hrs old the Dr ordered a scope in which it passed then. There was no concern as to why it didn't pass on its own, they only cared that it had passed. Lochlan was constipated from the time he was born. He wasn't an easy nurser- it took quite a bit of work. Knowing he could be MSPI and have reflux as well I went on the diet right away. At 1 week of age he was placed on reflux medication and it never seemed to do enough. He spent the first 3 mo in an infant swing at night. Lochlan was a very sickly baby as well many ear infections and unknown GI viruses. He followed the same cycle as Sully-becoming ill (rash, diarrhea, ear infection and antibiotics) after every well baby check (vaccines). He was placed on formula at 2 mo of age due to chronic constipation and reflux. Unlike Sully he gained good weight and did not have the failure to thrive (thank the Lord!) We kept on his medication for reflux thinking that it was the cause of Sully's food aversions. 
We were certain to do things right this time and follow our gut-rather than our Dr. We thought we were on top of the reflux, feeding and illnesses. It wasn't until after Lochlan turned one that he really changed. I believe it was the combo of vaccines (MMR...) and the start of Vit. D milk. At 12 mo. he was babbling, almost walking, engaging, laughing, smiling we were sure we had beat it. It was somewhere between 12-14 mo he stopped babbling and by 18 mo his eye contact was almost gone. He would no longer answer to his name and he didn't point or wave. It wasn't until we had moved to Iowa and we met with our new pediatrician for his 18mo well child check that I realized we had missed the signs.
We were so consumed with Sully and his diagnosis and getting him therapy that we didn't see it coming.We had even put Lochlan on the GFCF diet with Sully as a precaution when Lochlan was 14mo. We had Lochlan evaluated by the public school and at 18mo and he was severely delayed. His official autism diagnosis came just after his 2nd birthday. How could we have let this happen!! We have not had any intervention make a huge impact on his recovery (like Sully had with the GFCF diet) and we are constantly searching to find a way to help him "out".
We found out we were expecting our second child just before we took Sully to Omaha to admit him for failing to thrive(Sully was 12 mo old). We were excited to have another baby and had hoped that this baby wouldn't be so sick or fragile like Sully.
My pregnancy was similar-terrible pre-term labor, lots of medication (daily terbutaline and procardia from 28 weeks gestation on), 3 weeks of bed rest and a flu shot. I went in 2 times before we delivered in labor and they were able to stop it with medication. I delivered Lochlan at the beginning of 34 weeks. His heart rate was struggling so he was vacuumed out in the end and was having trouble breathing when he was born. (we were both given antibiotics during delivery as well) He was taken to the nursery immediately and once they had him stable he was given the routine newborn care. Lochlan never passed his meconium and at 48 hrs old the Dr ordered a scope in which it passed then. There was no concern as to why it didn't pass on its own, they only cared that it had passed. Lochlan was constipated from the time he was born. He wasn't an easy nurser- it took quite a bit of work. Knowing he could be MSPI and have reflux as well I went on the diet right away. At 1 week of age he was placed on reflux medication and it never seemed to do enough. He spent the first 3 mo in an infant swing at night. Lochlan was a very sickly baby as well many ear infections and unknown GI viruses. He followed the same cycle as Sully-becoming ill (rash, diarrhea, ear infection and antibiotics) after every well baby check (vaccines). He was placed on formula at 2 mo of age due to chronic constipation and reflux. Unlike Sully he gained good weight and did not have the failure to thrive (thank the Lord!) We kept on his medication for reflux thinking that it was the cause of Sully's food aversions. 
We were certain to do things right this time and follow our gut-rather than our Dr. We thought we were on top of the reflux, feeding and illnesses. It wasn't until after Lochlan turned one that he really changed. I believe it was the combo of vaccines (MMR...) and the start of Vit. D milk. At 12 mo. he was babbling, almost walking, engaging, laughing, smiling we were sure we had beat it. It was somewhere between 12-14 mo he stopped babbling and by 18 mo his eye contact was almost gone. He would no longer answer to his name and he didn't point or wave. It wasn't until we had moved to Iowa and we met with our new pediatrician for his 18mo well child check that I realized we had missed the signs.
We were so consumed with Sully and his diagnosis and getting him therapy that we didn't see it coming.We had even put Lochlan on the GFCF diet with Sully as a precaution when Lochlan was 14mo. We had Lochlan evaluated by the public school and at 18mo and he was severely delayed. His official autism diagnosis came just after his 2nd birthday. How could we have let this happen!! We have not had any intervention make a huge impact on his recovery (like Sully had with the GFCF diet) and we are constantly searching to find a way to help him "out". And so a new chapter in our lives begins.
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