I know it is not something we like to talk about. But, lets face it we all have to do it and it is a necessary body function for health. So, getting down to the nitty gritty. Many kids and people are constipated. Why? Well, in my opinion it is our westernized diet that is toxic to our GI tract. We, especially babies and kids are just not able to process it. Looking at the causes of constipation. Your immune system is located in your GI tract, it is the brain of your body. Vaccines, antibiotics, pesticides, food additives... these all bog down your immune system/GI tract. The body views them all as foreign and tries to fight them off as they aren't supposed to be there. Sugar is also detrimental to your GI tract. When your body is unable to keep up with the "toxins" it becomes chronically inflamed as it is trying to protect itself. This inflammation makes it hard for the immune system to get the fighter cells where they need to go and also hinders the nutrients from being absorbed into the body. Over time the inflammation causes the intestines to not be able to contract and therefore stool begins to slow and eventually become stagnant in your intestines. When stool becomes stagnant it provides an ideal environment for bacteria and yeast to grow causing further harm. If this goes on for a long period of time eventually the intestines forget they contracted at all and you are now dependent on laxatives ie:miralax. Okay, so that is the skinny on constipation. What to do about it? Well we have seen many, many GI specialists. No one was interested in figuring out the cause they were only interested in making the stool move, ie miralax. So what do you do?
First off, you HAVE to get the stool moving. There is no way to help heal the digestive tract if the stool is not moving. And I don't mean by the use of miralax. Miralax is a plastic polymer. It is not absorbed into the system and does not make the intestines contract. All miralax does is make the stool slippery enough to squeeze out. If I may put it bluntly. It will, by no means, ever make the intestines regain normal function. It is a band-aid. We have tried many supplements to support digestive function but the best we have found is a herbal tea called Smooth Move Herbal Tea. It has senna in it and it helps to force the intestines to contract. This can be painful, however being constipated is painful and if you take it slowly over the course of a couple weeks you should start seeing movement. We used 1-2 tablespoons per evening for about 2 weeks. Even with Lochlan's severe dysmotility his intestines started contracting and things started moving within 2 weeks. It is imperative that you get the stool to move and make the intestines contract. Over time the muscle memory will return and the intestines will remember how to contract.
Secondly, you need to remove offenders. When I say offenders, I mean foods that are negative to the digestive tract. I HIGHLY recommend a diet called the Specific Carbohydrate Diet. This diet is designed to heal the digestive tract and over time create an environment in which bacteria and yeast cannot thrive. Another great diet is the GAPS diet. You will have to get rid of the yeast and bacteria in order to have the intestines function on their own. These diets are very complex yet if you are dedicated you can have lasting success. If you are unwilling to do one of the two diets listed above please consider to remove food coloring, preservatives, pesticides, dairy, wheat and processed and artificial sugar. I know that's a tall order but all of these affect the digestive tract negatively. Our dairy today is highly processed and contains loads of hormones and antibiotics. The proteins in dairy are actually changed in the processing making them small enough to cross the blood brain barrier.Wheat/gluten protiens are the same. You can start small, but remember that yeast and bacteria will grow almost 10 times faster than the length of time it takes to kill it.
Third, once you've got the stool moving and your tackling one of the two diets listed above, which are very detailed and specific even regarding vitamins and supplements. I recommend seeing a chiropractor. Having your body in line is crucial to its ability to heal itself. We have had huge success with chiropractic and all 3 of my kiddos LOVE going.
This is just a beginning baseline. I encourage everyone to read Breaking the Vicious Cycle by Elaine Gotchall. She is a wealth of knowledge and she breaks down why and how her diet is healing.
Remember we didn't get this way overnight and we can't reverse the symptoms overnight but Gastrointestinal Health is possible.
Please feel free to contact me for more info. More to come about Leaky Gut.
Wednesday, April 17, 2013
Tuesday, April 16, 2013
A Starting Place.....
Where to begin......
I have run into numerous people lately, like us, who have had behavior and/or gastrointestinal issues. To me, this is an epidemic affecting too many of our children today. With the number of kids on the autism spectrum reaching 1 in 50, according to the latest data. This number, however, does not include the number of kids suffering with adhd, asthma or allergies. There is no doubt in my mind that our children are being poisoned by the environment, the food they eat and the medicine their given. Their tiny bodies have yet to develop before being overwhelmed with toxins. With that being said, I have to disclose, I am not a doctor. I have not had formal medical training. What I have had is a child, who the medical community failed, and I have years of research and experience. For many people who have been failed by the medical community, research and experience account for so much more than an education. Okay enough about that. I must recommend that each parent do their own research and not just take my word for anything. It is soooo important to be informed, and the best way to do it is read, read, read. I first recommend a book written by a great doctor from the east coast named Kenneth Bock. Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders In his book he explains why we are seeing such an increase in these four disorders and what you can do about it. I have other books that I have read that I will mention later on at the end of the post. So back to, What can I do now to help my child with their behaviors and/or tummy issues? I have to tell you that many, not all, but many behavior issues are a result of what we eat and how our digestive tract is working. If your child is chronically constipated or has chronic loose stools, it is likely that there is a whole lot more going on. There is no denying that the brain of the body is the gut. So where do we start??
1. Clean up the diet.
I know many people think that they eat pretty healthy. I too was one who thought that our family ate healthy until I looked closer at the food labels. When I mean clean up the diet, I mean eating whole, organic, non-gmo foods, limit or remove sugar and removing everything artificial. It sounds intimidating I know. Start small. Next time you go to the grocery store only buy foods on the outside of the store. Try recipes that cook from scratch. Anything boxed is processed and more than likely has ingredients that can make your gut struggle to process.
Have you ever taken a look at the foods that target kids; fruit snacks, kool-aid, candy..... all these foods are marketed for kids and all three are full of artificial color and sugar. Some of the worst things kids can eat are artificial coloring, artificial sugar, preservatives and pesticides. All four can cause behavior and tummy issues. One easy plan is to eliminate one thing each month. So this month you do away with artificial coloring (this includes all food dyes). Then next month remove artifical sweetners such as splenda, and so on. If your child is a really picky eater just have a little faith that once the offending foods are out of their diets they will adjust. There my be some withdrawl as most of these "food additives" are seen by the body as chemicals. I too questioned my ability regarding putting my son on a diet. When we first took my oldest son off dairy, which included his feeding tube formula that he drank orally. He had about 2 days of CRAZY withdrawl symptoms. Fever, hallucinations, fits of rage. By day 2, I thought I was killing him. Thank goodness I had some great support because, the following evening was the first time he spoke spontaneously and in sentence. It was so amazing. Another trick to is to wash all your produce in a grapefruit extract wash to remove the pesticides. Pesticides are very likely culprits in gastro irritation and negative aggressive and impulsive behavior. Trader Joe's has a great and inexpensive produce wash available.
There are many websites that help with learning to clean up the diet but my favorite is www.pecanbread.com. The author, Elaine Gotchall, of the book Breaking the Vicious Cycle, talks about how to heal the gut and help it return to normal function. We have personally done the specific carbohydrate diet (though it is very difficult in the beginning) and I must say that it is now our way of life. It took some time for the kids to adjust but once they did they started eating vegetables and the variety of their diet expanded tremendously! There is another website, ran by Carrie Vitt, that is dedicated to whole organic cooking and has family friendly recipes as well as weekly meal plans you can purchase and her website is www.deliciouslyorganic.net.
There are 2 specific foods that seem to have a reputation for causing issues and they are dairy and gluten (wheat). We have had issues with these two foods and because of the way that they are processed many people can no longer tolerate them. For adults the feel sick, bloated maybe have cramping, for kids they don't know how to explain their pain so for many it shows in their behavior. www.tacanow.org is a great site for information regarding a gfcf (gluten/casein free) diet. Which I must say is so much easier to follow today than it was when we began 6 years ago.
Cleaning up the diet is Crucial and can make or break your success. If you put junk in you will get junk out. It is that simple.
2. Add in a quality vitamin.
We have done it all. We have tried it all. The best all in one multi-vitamin we personally have found is called Intrakid. You can purchase it at www.evitalhealth.com. It is full of everything you could possibly want in a multi. It is very complete however, there are a couple things I would add.
#1- a 3rd party tested omega 3 supplement preferably krill oil. Barleans has some great tasting omega supplements as well and you can purchase at www.vitacost.com at a somewhat reduced price. They taste great and my kids love taking it. Omega 3's are great for immune function and for healing the gut not to mention brain function.
#2- I would also add vitamin D. However it is important to have vitamin D3 with K2. The K2 helps the body absorb the D3. You can find this at vitacost as well.
#3 Probiotics. If you or your child is senstivie to dairy make sure to get one that is dairy free. There are many good probiotics, the key is to get one that contains Lactobacillus acidophilus DDS-1.
#4- Vitamin B- This is a great vitamin that helps stabilize moods, mental focus and promote the feeling of wellbeing.
Those three are a great place to start. If you cannot afford intrakid then try to find a whole food multi vitamin from a reputable company. If your child has digestive issues a digestive enzyme may be helpful with meals.
3. Detox the body.
Epsom salt baths are an easy way to detox your body. For kids this is also easy, as I don't know of many kids who don't enjoy being in the bath. We have even used a benonite clay bath for detox with good results. You can find some great recipes here for homemade Epsom salt baths.
4. Detox your home
This is another area that can be overwhelming but start small. Instead of replacing your Scrubbing Bubbles try a google search for a natural toilet bowl cleaner. We use natural dish soap mixed with baking soda for ours.There are millions of sites dedicated to natural living. Wellnessmama has numerous ideas for natural cleaning and living. I have this site bookmarked and frequent it often as there is sooo much information in it. Chemicals in your home can also affect behavior and also gut health. So minimizing the toxic load will help take some of the pressure of the body. OrganicAuthority has lots of good info regarding house goods as well. Look for chemical free substitutes for all your home cleaners and soaps.
This is just a start but if you do all 4 of the these you will be on your way to healing your body and mind.
Websites I frequent:
www.mercola.com he is the best in information everything supplemental and medical.
www.wellnessmama.com she has loads of great tips, info and ideas.
www.pecanbread.com heal the gut for good!
www.deliciouslyorganic.net great cooking ideas
www.tacanow.org great info for GFCF diet
www.organicauthority.com
Other books to read:
Breaking the Vicious Cycle, By: Elaine Gotchall
Changing the Course of Autism By: Bryan Jepsen
I have run into numerous people lately, like us, who have had behavior and/or gastrointestinal issues. To me, this is an epidemic affecting too many of our children today. With the number of kids on the autism spectrum reaching 1 in 50, according to the latest data. This number, however, does not include the number of kids suffering with adhd, asthma or allergies. There is no doubt in my mind that our children are being poisoned by the environment, the food they eat and the medicine their given. Their tiny bodies have yet to develop before being overwhelmed with toxins. With that being said, I have to disclose, I am not a doctor. I have not had formal medical training. What I have had is a child, who the medical community failed, and I have years of research and experience. For many people who have been failed by the medical community, research and experience account for so much more than an education. Okay enough about that. I must recommend that each parent do their own research and not just take my word for anything. It is soooo important to be informed, and the best way to do it is read, read, read. I first recommend a book written by a great doctor from the east coast named Kenneth Bock. Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders In his book he explains why we are seeing such an increase in these four disorders and what you can do about it. I have other books that I have read that I will mention later on at the end of the post. So back to, What can I do now to help my child with their behaviors and/or tummy issues? I have to tell you that many, not all, but many behavior issues are a result of what we eat and how our digestive tract is working. If your child is chronically constipated or has chronic loose stools, it is likely that there is a whole lot more going on. There is no denying that the brain of the body is the gut. So where do we start??
1. Clean up the diet.
I know many people think that they eat pretty healthy. I too was one who thought that our family ate healthy until I looked closer at the food labels. When I mean clean up the diet, I mean eating whole, organic, non-gmo foods, limit or remove sugar and removing everything artificial. It sounds intimidating I know. Start small. Next time you go to the grocery store only buy foods on the outside of the store. Try recipes that cook from scratch. Anything boxed is processed and more than likely has ingredients that can make your gut struggle to process.
Have you ever taken a look at the foods that target kids; fruit snacks, kool-aid, candy..... all these foods are marketed for kids and all three are full of artificial color and sugar. Some of the worst things kids can eat are artificial coloring, artificial sugar, preservatives and pesticides. All four can cause behavior and tummy issues. One easy plan is to eliminate one thing each month. So this month you do away with artificial coloring (this includes all food dyes). Then next month remove artifical sweetners such as splenda, and so on. If your child is a really picky eater just have a little faith that once the offending foods are out of their diets they will adjust. There my be some withdrawl as most of these "food additives" are seen by the body as chemicals. I too questioned my ability regarding putting my son on a diet. When we first took my oldest son off dairy, which included his feeding tube formula that he drank orally. He had about 2 days of CRAZY withdrawl symptoms. Fever, hallucinations, fits of rage. By day 2, I thought I was killing him. Thank goodness I had some great support because, the following evening was the first time he spoke spontaneously and in sentence. It was so amazing. Another trick to is to wash all your produce in a grapefruit extract wash to remove the pesticides. Pesticides are very likely culprits in gastro irritation and negative aggressive and impulsive behavior. Trader Joe's has a great and inexpensive produce wash available.
There are many websites that help with learning to clean up the diet but my favorite is www.pecanbread.com. The author, Elaine Gotchall, of the book Breaking the Vicious Cycle, talks about how to heal the gut and help it return to normal function. We have personally done the specific carbohydrate diet (though it is very difficult in the beginning) and I must say that it is now our way of life. It took some time for the kids to adjust but once they did they started eating vegetables and the variety of their diet expanded tremendously! There is another website, ran by Carrie Vitt, that is dedicated to whole organic cooking and has family friendly recipes as well as weekly meal plans you can purchase and her website is www.deliciouslyorganic.net.
There are 2 specific foods that seem to have a reputation for causing issues and they are dairy and gluten (wheat). We have had issues with these two foods and because of the way that they are processed many people can no longer tolerate them. For adults the feel sick, bloated maybe have cramping, for kids they don't know how to explain their pain so for many it shows in their behavior. www.tacanow.org is a great site for information regarding a gfcf (gluten/casein free) diet. Which I must say is so much easier to follow today than it was when we began 6 years ago.
Cleaning up the diet is Crucial and can make or break your success. If you put junk in you will get junk out. It is that simple.
2. Add in a quality vitamin.
We have done it all. We have tried it all. The best all in one multi-vitamin we personally have found is called Intrakid. You can purchase it at www.evitalhealth.com. It is full of everything you could possibly want in a multi. It is very complete however, there are a couple things I would add.
#1- a 3rd party tested omega 3 supplement preferably krill oil. Barleans has some great tasting omega supplements as well and you can purchase at www.vitacost.com at a somewhat reduced price. They taste great and my kids love taking it. Omega 3's are great for immune function and for healing the gut not to mention brain function.
#2- I would also add vitamin D. However it is important to have vitamin D3 with K2. The K2 helps the body absorb the D3. You can find this at vitacost as well.
#3 Probiotics. If you or your child is senstivie to dairy make sure to get one that is dairy free. There are many good probiotics, the key is to get one that contains Lactobacillus acidophilus DDS-1.
#4- Vitamin B- This is a great vitamin that helps stabilize moods, mental focus and promote the feeling of wellbeing.
Those three are a great place to start. If you cannot afford intrakid then try to find a whole food multi vitamin from a reputable company. If your child has digestive issues a digestive enzyme may be helpful with meals.
3. Detox the body.
Epsom salt baths are an easy way to detox your body. For kids this is also easy, as I don't know of many kids who don't enjoy being in the bath. We have even used a benonite clay bath for detox with good results. You can find some great recipes here for homemade Epsom salt baths.
4. Detox your home
This is another area that can be overwhelming but start small. Instead of replacing your Scrubbing Bubbles try a google search for a natural toilet bowl cleaner. We use natural dish soap mixed with baking soda for ours.There are millions of sites dedicated to natural living. Wellnessmama has numerous ideas for natural cleaning and living. I have this site bookmarked and frequent it often as there is sooo much information in it. Chemicals in your home can also affect behavior and also gut health. So minimizing the toxic load will help take some of the pressure of the body. OrganicAuthority has lots of good info regarding house goods as well. Look for chemical free substitutes for all your home cleaners and soaps.
This is just a start but if you do all 4 of the these you will be on your way to healing your body and mind.
Websites I frequent:
www.mercola.com he is the best in information everything supplemental and medical.
www.wellnessmama.com she has loads of great tips, info and ideas.
www.pecanbread.com heal the gut for good!
www.deliciouslyorganic.net great cooking ideas
www.tacanow.org great info for GFCF diet
www.organicauthority.com
Other books to read:
Breaking the Vicious Cycle, By: Elaine Gotchall
Changing the Course of Autism By: Bryan Jepsen
Tuesday, June 7, 2011
Update June 2011
Well since my last post our lives have really turned upside down. In March we welcomed our third child, a beautiful baby girl. Baby Mila Aibhlinn has joined the Morris clan and her sweet disposition and contagious smile captivate our wild and crazy boys. Shortly after her arrival, Cody, my husband took a job in Baton Rouge, LA, and we will be moving mid June. We will be leaving all our therapists, clinics, doctors, friends and all that we've fought to get. But, not for nothing. We believe that God is leading us to Louisiana and what he has in store we do not know. Like our move to Des Moines from Lincoln, we were very uncertain. We thought we were taking a huge risk, but moving to Des Moines was the best thing that has ever happened to our family thus far. We have been so richly blessed in every way. Sully and Lochlan would have never had the services, therapists or opportunities if we hadn't taken a step of faith and jumped. So, we stand at the edge again. Trusting in a God that we serve, that this leap could be the best thing that has ever happened to us. We ask for your prayers, for wisdom and faith, that the transition would go smoothly and that the boys we survive all that is unstructured and chaos. So far it has been very hard on them. To leave the relationships they worked so hard to make, to leave all that is safe and dependable for uncertainty and disorganization. We ask for prayer for Cody and I so that we have God's unconditional patience and resilience in this time of tantrums, stimming, rules and rigidity. We are very sad to leave our friends and church family behind. I can only hope that we will build friendships and supports in Louisana like we have had in Des Moines.
Monday, February 7, 2011
Update
Well, I guess I am not getting any better at keeping up with our blog!! :) I do try my best. Currently both the boys are doing social skills therapy through an autism center in our area every morning. Lochlan's in home programing has stopped due to waiver issues and so our life has changed dramatically over the course of the last couple months. We are also expecting our third baby ( a girl!) and due in March of 2011. I am still currently homeschooling Sully and Lochlan is going to preschool in the afternoons. Other than that we keep busy trying to keep up with going every day squeezing in appts in the afternoons when we can. We are currently doing a milk free organic diet. I am not sure if we will be able to continue on this type of diet as stimming has taken over our house and behavior is pretty rigid and impulsive. I keep praying that God would give me guidance as we have found some new freedom in a less restrictive diet. (the boys are enjoying it as well!)
As for Lochlan and his big Buddha belly. He was off antibiotics for about 4 1/2 months and doing well at first. Then little by little the distention returned and he started to stop stooling all together. So back on the antibiotics we go again for another 6 months. Dysmotility testing has been pushed out to early fall if we are lucky at this point. This too I keep praying that God would send answers my way. We have had some regression with the discontinuing of in-home ABA and so we are trying to work some of that out. He just doesn't do well with any kind of free-time. Lochlan has developed a love for computers and all things electronic and steals my iPhone every chance he gets.
As for Lochlan and his big Buddha belly. He was off antibiotics for about 4 1/2 months and doing well at first. Then little by little the distention returned and he started to stop stooling all together. So back on the antibiotics we go again for another 6 months. Dysmotility testing has been pushed out to early fall if we are lucky at this point. This too I keep praying that God would send answers my way. We have had some regression with the discontinuing of in-home ABA and so we are trying to work some of that out. He just doesn't do well with any kind of free-time. Lochlan has developed a love for computers and all things electronic and steals my iPhone every chance he gets.
Sully continues to do well. We went to Minneapolis to see the Epilepsy Center for a Neuropsych evaluation. The auditory processing issues have been identified as attention issues and we will need to do more testing at some point. We have added pycnogenol to our supplement list in order to help him out. As for now the jury is still out if it will do enough. He is doing well at school work despite needing constant prompting and really enjoys going to the autism center to play with his friends.
Every day we do the same grind and try to find humor in the chaos!!!
Dr. Mercola Interviews Dr. Andrew Wakefield on His MMR Study (Part 1 of 10)
For the remaining parts of Dr. Wakefields interview with Dr. Mercola check them out on YouTube or Mercola.com
Also check out
www.ageofautism.com/2011/01/keeping-anderson-cooper-honest-is-brian-deer-the-fraud.html
Sunday, June 13, 2010
Update 06-12-10
Well summer is in full swing and we are struggling to settle into a summer routine. June is going to be one of the busiest months we have had yet full of traveling, birthdays, a wedding, company, a reunion, and father's day. I am praying that once July arrives we will have survived and some rest will be in sight.
Well many are wondering what is going on and I apologize at the tardy update! I thank everyone for their prayers and we really feel God's presence. The middle of may we did some food allergy and sensitivity tests on the boys as well as a stool analysis on Sully. The results of the food allergy and sensitivity were quite surprising as Lochlan had low reactivity to no reactivity to the 93 foods and 63 inhalants- quite a different story from his skin test. My only thought is that the specific carbohydrate diet has helped and also the antibiotics for the bacterial overgrowth. Sully however showed extremely high reactivity to MANY foods. Included pretty much everything has been eating lately- beef, eggs, cheese, almonds, all dairy products and wheat products, yeast and much more. With such a high reactivity it really suggests leaky gut and not true allergy. This could account for much of the OCD symptoms and anxiety symptoms as well. Since we have removed the foods of which their proteins are leaking into his blood stream-he is actually doing much better behaviorally. Sully stool test results also really surprised us as he has the presence of occult blood (this presence means there is probably bleeding in the small intestines-could be ulcers/colitis/inflammation...), extreme yeast overgrowth and bacterial dysbiosis-meaning he has more bad bacteria than good in his intestines. So we began treating the yeast with Nystatin 4 times per day we also added in Uva Ursi to treat the psuedamonias bacteria (bad bacteria). He continues to be on a low sugar/carb diet and we have successfully removed the foods in which he is sensitive. We have had one major set back as he has recently developed a fever and abdominal pain. I will consult with our doctor on maybe backing off the nystatin for a day or two and using garlic or some other natural remedy possibly to minimize symptoms of the die-off. I will keep you all posted.
As for Lochlan, he will be having a stool analysis done this week as he is off his antibiotics for now. We will be starting the antibiotics again as he is actually doing better than he ever has with the distention and stooling. He is going everyday and the distention is much more minimal than what it was. I believe the 2 weeks of antibiotics have killed enough bacteria that if we go on them again maybe we can kill the overgrowth and begin to heal the lining so that it will regain function. We are praying that the bacterial overgrowth is the culprit for all of his distention, malabsorption and dysmotility and if we treat it then we can resolve all these issues. There is hope! Meanwhile the dysmotility testing is actually closer to 9-12 mo out and I am happy that we have some time to entertain this idea before having to put Lochlan through more testing. His vitamin levels were okay and as long as he can keep his weight up we won't have to do anything drastic. He is still not eating great but we are working on it. His follow up with our GI doctor isn't until late July so we have some time to see if the antibiotics will work and look at the stool results.
Well that's about it for now. I will keep updating and thanks for all your support and prayers.
Well many are wondering what is going on and I apologize at the tardy update! I thank everyone for their prayers and we really feel God's presence. The middle of may we did some food allergy and sensitivity tests on the boys as well as a stool analysis on Sully. The results of the food allergy and sensitivity were quite surprising as Lochlan had low reactivity to no reactivity to the 93 foods and 63 inhalants- quite a different story from his skin test. My only thought is that the specific carbohydrate diet has helped and also the antibiotics for the bacterial overgrowth. Sully however showed extremely high reactivity to MANY foods. Included pretty much everything has been eating lately- beef, eggs, cheese, almonds, all dairy products and wheat products, yeast and much more. With such a high reactivity it really suggests leaky gut and not true allergy. This could account for much of the OCD symptoms and anxiety symptoms as well. Since we have removed the foods of which their proteins are leaking into his blood stream-he is actually doing much better behaviorally. Sully stool test results also really surprised us as he has the presence of occult blood (this presence means there is probably bleeding in the small intestines-could be ulcers/colitis/inflammation...), extreme yeast overgrowth and bacterial dysbiosis-meaning he has more bad bacteria than good in his intestines. So we began treating the yeast with Nystatin 4 times per day we also added in Uva Ursi to treat the psuedamonias bacteria (bad bacteria). He continues to be on a low sugar/carb diet and we have successfully removed the foods in which he is sensitive. We have had one major set back as he has recently developed a fever and abdominal pain. I will consult with our doctor on maybe backing off the nystatin for a day or two and using garlic or some other natural remedy possibly to minimize symptoms of the die-off. I will keep you all posted.
As for Lochlan, he will be having a stool analysis done this week as he is off his antibiotics for now. We will be starting the antibiotics again as he is actually doing better than he ever has with the distention and stooling. He is going everyday and the distention is much more minimal than what it was. I believe the 2 weeks of antibiotics have killed enough bacteria that if we go on them again maybe we can kill the overgrowth and begin to heal the lining so that it will regain function. We are praying that the bacterial overgrowth is the culprit for all of his distention, malabsorption and dysmotility and if we treat it then we can resolve all these issues. There is hope! Meanwhile the dysmotility testing is actually closer to 9-12 mo out and I am happy that we have some time to entertain this idea before having to put Lochlan through more testing. His vitamin levels were okay and as long as he can keep his weight up we won't have to do anything drastic. He is still not eating great but we are working on it. His follow up with our GI doctor isn't until late July so we have some time to see if the antibiotics will work and look at the stool results.
Well that's about it for now. I will keep updating and thanks for all your support and prayers.
Wednesday, May 26, 2010
Small bowel series and Dysmotility Consult in Kansas City
Sorry it took so long for an update. 600 miles, 3 different states and 2 different Children's Hospitals and we are finally home for now.
On Monday Lochlan had a small bowel series with follow through in Omaha at the children's hospital. Our dr. wanted to look to see if there were any anatomical problems with Lochlan's small bowel that could account for the chronic distention and other problems. He struggled with drinking the barium but after much persuading and counting each sip he did finally get enough barium down to complete the test. We do not have any results yet but are waiting to hear. Once he gets these results then we will move forward with scheduling more tests to figure out what Lochlan is having trouble digesting.
On Tuesday we were on the way to Kansas City to mercy children's hospital for our Dysmotility consult. The good news is that since Lochlan is not throwing up his food there is a really good chance we can fix his dysmotility issues. He did lots of blood work and took some xrays. Lochlan will need a colonoscopy and some sort of esophageal test (I am not sure of the name) he will also need dysmotility testing but that will be a few months out. After he gets the blood results he will try to get with a dietitian and see if we can't figure out foods that he can tolerate so we can avoid the feeding tube. Lochlan has been having lots of anxiety about the feeding tube and he has started having nightmares, we are pretty sure they are about feeding tubes and needles as he is crying about them in his sleep. So we are really trying to minimize his trauma as he has been through tons of testing already and there is so much more to do. The specialist in Kansas is only a dysmotility specialist so we will continue to work on the malabsorption issues and bacterial overgrowth issues with our dr. in Omaha.
So we are waiting and again and really trying to be patient. Lochlan's distention is still causing issues and we are praying that we can figure out a way to help him while we endure the wait. He was having so much diarrhea on the antibiotic (this was the second one) that we had to take him off it again as he was becoming dehydrated and his body could not physically handle the stress of it. We did do some other testing for food sensitivities through our regular doctor and we are anxiously awaiting those results too. So I guess thats about it for now. We will continue to wait and keep updating, thanks to all those who are praying for us. We can really feel God's presence and assurance that he will work this all out and we just have to rely on him and his timing.
On a different note- Lochlans love of movies has really blossomed lately and he and Sully crack us up by re-enacting scenes from movies they have seen. One of his favorite in particular is Astroboy. And in one scene they are standing at the door, they knock and another girl opens a slot and asks for a password. The other girl replied "don't make me hurt you!" and the girl behind the door says "i guess that will work" and opens the door. Sooo. We were at childrens in kansas city and I took Lochlan into the bathroom. He ran ahead and locked the stall door before I could get there. I told him to open the door. He said "what's the password?" I said "Lochlan open please". He said "say, don't make me hurt you, mom." Normally this wouldn't bother me, but there just happened to be another woman at the sink washing her hands. She smiled as she heard me tell my four year old "don't make me hurt you". I was so embarrassed as I had no idea is she had ever seen the movie or if she would have wondered where a small child would come up with something like that. Anyhow, thats all it took and he opened the door.
On Monday Lochlan had a small bowel series with follow through in Omaha at the children's hospital. Our dr. wanted to look to see if there were any anatomical problems with Lochlan's small bowel that could account for the chronic distention and other problems. He struggled with drinking the barium but after much persuading and counting each sip he did finally get enough barium down to complete the test. We do not have any results yet but are waiting to hear. Once he gets these results then we will move forward with scheduling more tests to figure out what Lochlan is having trouble digesting.
On Tuesday we were on the way to Kansas City to mercy children's hospital for our Dysmotility consult. The good news is that since Lochlan is not throwing up his food there is a really good chance we can fix his dysmotility issues. He did lots of blood work and took some xrays. Lochlan will need a colonoscopy and some sort of esophageal test (I am not sure of the name) he will also need dysmotility testing but that will be a few months out. After he gets the blood results he will try to get with a dietitian and see if we can't figure out foods that he can tolerate so we can avoid the feeding tube. Lochlan has been having lots of anxiety about the feeding tube and he has started having nightmares, we are pretty sure they are about feeding tubes and needles as he is crying about them in his sleep. So we are really trying to minimize his trauma as he has been through tons of testing already and there is so much more to do. The specialist in Kansas is only a dysmotility specialist so we will continue to work on the malabsorption issues and bacterial overgrowth issues with our dr. in Omaha.
So we are waiting and again and really trying to be patient. Lochlan's distention is still causing issues and we are praying that we can figure out a way to help him while we endure the wait. He was having so much diarrhea on the antibiotic (this was the second one) that we had to take him off it again as he was becoming dehydrated and his body could not physically handle the stress of it. We did do some other testing for food sensitivities through our regular doctor and we are anxiously awaiting those results too. So I guess thats about it for now. We will continue to wait and keep updating, thanks to all those who are praying for us. We can really feel God's presence and assurance that he will work this all out and we just have to rely on him and his timing.
On a different note- Lochlans love of movies has really blossomed lately and he and Sully crack us up by re-enacting scenes from movies they have seen. One of his favorite in particular is Astroboy. And in one scene they are standing at the door, they knock and another girl opens a slot and asks for a password. The other girl replied "don't make me hurt you!" and the girl behind the door says "i guess that will work" and opens the door. Sooo. We were at childrens in kansas city and I took Lochlan into the bathroom. He ran ahead and locked the stall door before I could get there. I told him to open the door. He said "what's the password?" I said "Lochlan open please". He said "say, don't make me hurt you, mom." Normally this wouldn't bother me, but there just happened to be another woman at the sink washing her hands. She smiled as she heard me tell my four year old "don't make me hurt you". I was so embarrassed as I had no idea is she had ever seen the movie or if she would have wondered where a small child would come up with something like that. Anyhow, thats all it took and he opened the door.
Saturday, May 15, 2010
Update 5-15-10
Well, the good news is Lochlan continues to hang in there despite what difficulties may come. On Friday the 14th I spoke with the specialists office in Kansas City. I wanted to make sure that we knew where we were going and that we would be able to go an get all the testing Lochlan would need that week. Motility testing is quite extensive and it measures the stools transit time as well as tests the muscles and so forth. This kind of testing can take days and so I wanted to make sure I had a good idea on how long we might be in KC. Not to my surprise, the receptionist told me that we would only see him for a consult on the 25th and any testing would be scheduled for another time. Currently they are scheduling motility testing 3 months out. I asked again if there would be any way to get it sooner and she told me the procedure room that it is done in is booked out that long. I had a feeling this would be the case. I called our doctor back in omaha and asked again if there was anyone else we could see or any other way to get in for the testing sooner. Their answer was no. Lochlan's distention has been getting bigger little by little and he is starting to back up, eat less and complain of tummy aches. We had planned to do some stool testing on him in a couple days to see what exactly is going on in there, but his doctor in omaha wants him to try the other antibiotic (gentamiacin) now and see if it will help his distention. We cannot do the stool testing as long as he is on antibiotics. So we will wait with the testing, and try the antibiotic.
It amazes me everyday how he can be so distended and uncomfortable and still have such a love for life and sense of humor. Despite his ongoing tummy troubles Lochlan is living each day enjoying what comes and looking forward to tomorrow. No wonder God instructs us to be like children. Imagine what our world would look like if everyone had this kind of determination and love for life.
It amazes me everyday how he can be so distended and uncomfortable and still have such a love for life and sense of humor. Despite his ongoing tummy troubles Lochlan is living each day enjoying what comes and looking forward to tomorrow. No wonder God instructs us to be like children. Imagine what our world would look like if everyone had this kind of determination and love for life.
Thursday, May 13, 2010
Update May 13,2010
Well Lochlan is still hanging in there. The distention is getting bigger and bigger each night and we are just praying that he continues to stool some to relieve some pressure. His appetite is getting less as the food is beginning to back up in his intestines and his sleeping has been getting worse as well. He has been complaining of tummy aches and says he unable to eat more than a few bites at a time. We are trying to get as many calories in him as we can, but I fear that he will continue to drop weight as he is not eating enough food. We are still hopeful that he will be able to hang in there and we can avoid the feeding tube, until the 25th of May (which is when the Specialist in KC worked us in sooner). We are so very thankful for his mercy on us as our original appointment was June 17th. Lochlan's behavior has been really difficult as well as he is stimming more and more, and his impulsiveness has really been trying. We will know more as time goes on and if he has dropped too much weight or has stopped stooling. We have an appointment in Omaha on Tuesday the 18th and our dr will decide then about the tube (if not sooner if things get much worse) if we can wait until the 25th to see the specialist. Thanks to everyone for your prayers.
Saturday, May 8, 2010
May 7, 2010 Update
Well our trip to Minneapolis' Integrative Medicine Clinic was very good. We were greatly impressed with their knowledge and were able to come up with some very good long term treatment plans for the boys. However, nothing for short term and we are still seeking answers for Lochlan's inability to digest and move solid food and his chronic distention. We will do more testing to check for more food sensitivities and what kind of bacteria/yeast that is in Lochlan's gut. We will also do the same tests on Sully to rule out any food sensitivities or bacterial overgrowth as he has some flags for both. The team had some great ideas such as aroma therapy, biofeedback and other things such as accupressure as well. We have a step by step plan to help Sully with his anxiety and it will not be quick but in time I really feel like we will be equipping him for life. The nutrionist had great ideas for us to help Lochlan to transition from formula when he is ready and we feel like once we clear this last battle with his bowels we will be set with a plan for the future. The team was great and both Cody and I were very impressed!
However not everything went great on the trip, during the last couple weeks Lochlan's behavior and "autistic symptoms" have escalated to numbers we haven't seen in almost a year. He was a nightmare on this trip and the new surroundings posed huge struggles for him as he could not overcome his obsession with the doors and lights in our hotel room. He is more aggressive and self injurious and the only thing we can think could possibly cause such an increase in these types of behaviors is the whey in the peptamen. The peptamen jr. contains milk proteins and this could possibly be our culprit. So, back to neocate formula we go. (this is the same formula he was weaning himself off of last fall on his own!) Our doctors are doing what they can to get us in to the motility specialists sooner than June and we may possibly be looking at taking him to the Nationwide Children's Hospital in Columbus, Ohio. As of Thursday he is no longer drinking the formula and even one ounce is a battle. After conversing with our team of doctors we have come to the conclusion that if he begins to back up and become distended as he was before the formula we would have no choice but to put a feeding tube in until we can get into the specialists. So now we sit and wait and pray for a miracle.
However not everything went great on the trip, during the last couple weeks Lochlan's behavior and "autistic symptoms" have escalated to numbers we haven't seen in almost a year. He was a nightmare on this trip and the new surroundings posed huge struggles for him as he could not overcome his obsession with the doors and lights in our hotel room. He is more aggressive and self injurious and the only thing we can think could possibly cause such an increase in these types of behaviors is the whey in the peptamen. The peptamen jr. contains milk proteins and this could possibly be our culprit. So, back to neocate formula we go. (this is the same formula he was weaning himself off of last fall on his own!) Our doctors are doing what they can to get us in to the motility specialists sooner than June and we may possibly be looking at taking him to the Nationwide Children's Hospital in Columbus, Ohio. As of Thursday he is no longer drinking the formula and even one ounce is a battle. After conversing with our team of doctors we have come to the conclusion that if he begins to back up and become distended as he was before the formula we would have no choice but to put a feeding tube in until we can get into the specialists. So now we sit and wait and pray for a miracle.
Sunday, May 2, 2010
May 2nd, 2010 Update
I just wanted to post an update on Lochlan. Monday of this last week Lochlan had more testing done in Omaha. This test was a hydrogen test and the results concluded that Lochlan has severe bacterial/yeast overgrowth in his small intestine. The doctor started him on very strong antibiotics and he will alternate every two weeks between the two. We are not sure how long he will need to be on these antibiotics it could be years. Lochlan is on formula for approximately 90 percent of his diet currently and we are struggling to keep him drinking and having a hard time getting the calories in. His GI tract is still unable to digest most foods and so it is very important he drinks the formula or we could be looking at feeding tubes. The formula he is on for digestive reasons is a feeding tube formula and it is primarily sugar (sucrose) and whey protein based so the formula is feeding the bacteria and yeast we are trying to kill with the antibiotics. So we are really praying God will give us direction. We are going tomorrow to Minneapolis to the children's hospital there to see their integrative medicine dept. We are hoping they will be able to give us some insight from their expertise and maybe bring some solutions to the table. We will see a nutritionist/naturalopathic doctor on Monday and the director of the dept (who is a GI specialist) and a Psychologist on Tuesday. They are a team approach and they look at the total body for health. We are asking for wisdom for both Cody and I and the doctors we are going to see, that their eyes would be open to Lochlan's needs and we might find some solutions for him. Also Sully too will see these doctors and we are praying that they will be able to help us manage his anxiety which is becoming more and more overwhelming. God is good and he will see us through. Thank you for all your support and prayer. Melissa
Wednesday, April 14, 2010
Update
Just a quick update.
The boys have successfully completed their first soccer clinic at the YMCA and both have decided they might be soccer players when they are big. It was even more fun that their cousins Jazlyn and Kyan did the clinic with them.
Sully has started AWANA and is loving every minute of it. He is doing very well, making friends and earning jewels.
He has also started swimming lessons and with the first lesson was promoted to the next level. He is quite the fish and it takes a small miracle to get him out of the water. One would think he could not breath out of the water if they witnessed the event. We are soooo very proud of him and it takes my breath away every day how much he is growing up and becoming more and more independent.
Lochlan is still attending preschool and really taking a liking to the vice principal's daughter, who is in his class. He talks about her often and they can be seen holding hands on a regular basis. He too is growing way to fast as well. He has taking a liking to his bike and has learned to pedal with training wheels. He too, like Sully, had this goal at OT and all his hard work paid off. 
Homeschooling is going well. Sully seems to be learning so I guess I am doing something right! I never understood the difficulty of homeschooling until now but I am enjoying all the time we have together and seeing him learn new things and be excited to learn. It truely is amazing. Freedom in our schedule is also a bonus and we are enjoying these beautiful spring days!
On to the SCD diet- early this year, actually January 19, 2010 we put into place a specific carbohydrate diet for the boys and I. This diet is quite complex but can have amazing results. Up until January the boys were on Neocate Jr. Formula to keep weight and keep them going. We had previously done a GFCF diet as well with some improvement. For some reason their copper levels were increasing and the only source of copper we could find was the neocate. So Cody and I decided that this complex specific carbohydrate diet would be worth trying for them. We removed the formula and went on the this very difficult, time consuming diet of cooked organic fruits, vegetables and meats. No sugars, carbs or starches are allowed! ( see www.pecanbread.com for more info) This particular SCD diet is also called a healing diet and recommended for any bowel disorder. We thought if we could do with food what formula has done for years maybe we could ween them off formula. By January Lochlan's bowel issues were continuing to get worse his belly becoming more and more distended. We met with Dr. Zapata the head of the children's GI dept at Children's Hospital and got his input on the diet and Lochlan. He told us that if he really needed to be on formula and if he really had malabsorption and maldigestive issues we would know quickly. Well, within 2 monthes we have had 3 ER trips and he has had more testing than I could have ever imagined.
After an upper and lower endoscopy, biopsies, many blood and urine tests still no answers. His GI tract just cannot simply digest solid food and he also has a severe dysmotility issue which makes it very difficult for him to poop. 
After 1 1/2 mo of suffering the docter decided Lochlan must go back on formula as the stomach distention was starting to cause issues with his breathing. He has referred us to Kansas City to see another specialist (our appt is in june) and in the mean time he continues to run tests. For now as long as we limit his solid food intake we can help him endure the wait. Currently he is on 30 oz. of peptamen jr. and about 1-2 cups (total amount) solid food per day, if any. He is quite the trooper and has even commented on how his tummy is not too big now. 
(left:Before formula only)
(below: after formula only diet)
He is also on a full cap of miralax every day to help the dysmotility. We have no idea what will come with this specialist in June we just pray that someday he would be off the formula and we could help his digestive system begin to work properly.
In January Lochlan turned 4!! I can't believe my baby is now 4! We had a great party at the bowling alley and celebrated his cousin Carter's 5th birthday as well. They all had a great time and even daddy had a blast.
The boys have successfully completed their first soccer clinic at the YMCA and both have decided they might be soccer players when they are big. It was even more fun that their cousins Jazlyn and Kyan did the clinic with them.
Sully has started AWANA and is loving every minute of it. He is doing very well, making friends and earning jewels.
He has also started swimming lessons and with the first lesson was promoted to the next level. He is quite the fish and it takes a small miracle to get him out of the water. One would think he could not breath out of the water if they witnessed the event. We are soooo very proud of him and it takes my breath away every day how much he is growing up and becoming more and more independent. Lochlan is still attending preschool and really taking a liking to the vice principal's daughter, who is in his class. He talks about her often and they can be seen holding hands on a regular basis. He too is growing way to fast as well. He has taking a liking to his bike and has learned to pedal with training wheels. He too, like Sully, had this goal at OT and all his hard work paid off.
Thanks to Aunt Shana for the great suit! You have created Tie monsters!!! Lochlan would sleep in his if he could.
Friday, November 13, 2009
To Brush....(Wilbarger Protocol)
Yesterday Sully's OT started a brushing program. Brushing is a technique to decrease tactile defensiveness by using a soft brush and rubbing it over the arms, back and legs followed by joint compressions.
Read more at:
http://www.nationalautismresources.com/wilbarger-protocol.html
Immediately after his session he appeared to be calmer and more relaxed. He really enjoys doing the therapy and verbalizes that it makes him feel good. Thank you God! for this technique as we have searched for the last 2 years for something that would help him be able to regulate his senses and everything has fallen short. I know it is only day 2, but I hope that it will continue to work for him and help him learn to relax a bit.
Read more at:
http://www.nationalautismresources.com/wilbarger-protocol.html
Immediately after his session he appeared to be calmer and more relaxed. He really enjoys doing the therapy and verbalizes that it makes him feel good. Thank you God! for this technique as we have searched for the last 2 years for something that would help him be able to regulate his senses and everything has fallen short. I know it is only day 2, but I hope that it will continue to work for him and help him learn to relax a bit.
Thursday, November 12, 2009
November 12, 2009...update
Special Notes:
Happy Birthday to Grandpa Morris!!! We love you!
Also as of November 11,2009 my husband Cody E. Morris has completed all his testing and is finally a commercial pilot! Congratulations my love!!! We are all so very proud of you!
So today was a bit rough. Lots of irritability, yelling and tantrums. It is the third day that we have had to use an enema for Lochlan just to give him some relief.
(pics below of Lochlan's abdomen distention. "buddha belly"-This is NOT normal!)
We have appointments with GI docs here in DM in December and January (although my gut tells me they will be of no help) and have started the intake process at thoughtful house but the wait will still be at best 2 months. I feel so helpless and have no idea what to do. Both boys are primarily on Neocate Jr. and I suppose that it may not be a bad thing. Their GI tracts won't have to work so hard and maybe they would settle down a bit. I am transitioning them back to GFCF diet but I pray that it will be enough in the mean time before we get into thoughtful house.
Thoughtful House is an autism treatment center in Austin,TX and New York.
Conference presentation by Dr. Krigsman:
(really all the dr.'s at thoughtful house have great presentations so check them all out!)
There is a Pediatric GI dr. by the name of Dr. Arthur Krigsman, who treats patients there. He is recovering kiddos by treating their bowel disease and other GI issues. I recently had the honor of going to an autism conference the 3rd of November in which he was one of the keynote speakers. I truly believe he can help the boys it is just a matter of making it happen. I ask for your prayers for wisdom in decisions, patience for the wait, knowledge for the doctors and healing of their bodies. I know God will see this through we just have to trust him.
God Bless!
Thursday, November 5, 2009
"be still, and know that I am God"
That is the verse that I will strive to live by in this period of life. When all is chaos and we too easily get swept up in the daily grind. When things are not as they seem and before you know it everything is unraveling before your eyes.
Well, things have not gone as we had wished lately. Our house has totally fallen apart, Lochlan has regressed and Sully is barely functioning. So what went wrong? How can we get back to where we were only 4 months ago? Why are we struggling with these issues again after it seemed as though we had overcome them? These are the questions I find myself asking whenever things start to go backward. Autism (any disability really) is bumpy, up and down roller coaster and it seems that the whenever we climb in progression there seems to be a fall deeper than that in which we started. The ups and downs are enough to break you down and cause worry, exhaustion, frustration, anger and depression. Every once in a while I catch myself in one of these vicious cycles and the only thing that breaks it is prayer and reading God's word. I long for someone to guarantee me that things will get better...and when no one else can give me the reassurance I need, I find it in his word, "be still and know that I am GOD."
About a month and a half ago, our Pastor of our church was out of town. Instead of someone else delivering a message they had testimonials of fellow church members about how God's grace really touched their lives. There were 3-4 speakers and 1 especially that really spoke to my heart. It was a mom of 3 or 4 children. Her testimony was about her daughter who had run a fever for 13 days and how scary it was waiting and not knowing what was wrong. During this time she reached out to her sister's in Christ for support, guidance and prayer. She and her family were just swarmed with God's love from friends and family. She really felt God's presence through the whole ordeal. If the fever lasted more than 14 days the Dr. was going to do more testing for things like cancer and other really scary illnesses. She was pleading, questioning God why and wondering how this was all happening. After 13 days and many, many prayers her daughter's fever broke. She was overjoyed. Her testimony was really to "be still and know that HE is GOD" and he can do anything!
About 2 months ago (early September) things seemed to be going well. The boys were doing well in school, other than some issues with behaviors from Lochlan. Overall though the kids seemed to be doing well, healthy and gaining weight. Lochlan's sleeping patterns were not great but things really felt as though they were smoothing out. Cody and I had felt that they boys were doing so well that we would re-introduce casein (diary) in small organic forms (derivatives really) once a day with enzymes and see what happened. At first we noticed no change. Stools were the same as before and so was behavior. Nothing seemed to change. Until, about the end of the month, we started noticing that things were changing. These changes were not immediate and some of them had started before we reintroduced dairy (we realized looking back at the whole picture). I am not convinced that casein is the culprit as much of these issues were on the rise before we realized the magnitude. I am not sure, however, that it isn't causing more stress, so with that said we will plan to remove it again. The stress of school was beginning to get to Sully and his anxiety rose to levels we have never seen before. Lochlan's behaviors and stims were getting worse as well. Both boys progressively got worse every day with eating, it started slowly and just built every day. One day Sully decided he wasn't going to eat any more vegetables. Then Lochlan started playing with his food more and more, becoming prompt dependant. He even stopped feeding himself with utensils for a while (only eating finger foods unless we fed him). Slowly they both slipped back into old terrible eating patterns. We would find ourselves prompting every bite and negotiating with them for over an hour sometimes two! They both seemed to resort back to their formula (neocate Jr.) in which they have been on for the last 2 years to keep weight. Sleeping seemed to get worse for Lochlan and he started waking up more often in the night.
Lochlan who was doing so well with potty training by the end of this last summer and in underwear, slowly started having more accidents. Before we knew it he stopped pooping again all together, holding it in. We tried almost any reinforcer we could think of but nothing seemed to work. We ended up having to use aloe vera juice and enemas to keep him from impacting. Our boy who was almost completely potty trained was back in diapers full-time.
Sully's anxiety and oppositional defiance continued to rise and our house soon became a hostile environment full of children fighting and yelling. In addition to Sully's irritability and irrational behavior, Lochlan resorted back to more aggressive behavior and even banging his head on occasion. Then about the early to mid October Sully started to run a fever (low grade 100-102). He stopped eating and his whole body just shut down. We thought at first mono, but deep down I knew it was more. I knew school was overloading him as late September he came home from school one day and was completely overloaded beyond belief. He was so upset he banged his head into our upstairs railing resorting in 4 stitches in his head. So I talked to the teachers and his aid, we had an emergency meeting. We tried to think of all these supports we could put into place. But, nothing would work as he was paranoid of being different and that alone was enough to send him over the edge. During all this ordeal with Sully and school issues, Lochlan was managing to be very aggressive and began to run off both at home and in out in the community.
Then in the midst of everything I came down with the H1N1 flu and was in bed for 4 days. I got so behind on everything! God bless my husband for taking care of sick people for 2 weeks! (and during all this time Cody has been trying to complete his commercial rating for aviation!) Just like we suspected the boys got it about 5 days after me! Once we were over the flu, Sully had been out of school almost 2 weeks already(including time off with fever). Cody and I noticed a slight change in him after being home a couple weeks and that his anxiety, although it was still there, was lighter, and seemed possibly manageable. So we decided to pull him and home school. After being sick with the flu, Sully was just not bouncing back as we had expected and he still wasn't really eating. I took him to the doctor and he had a terrible ear infection develop while being on antibiotics-for the flu (which was not clearing up). So we started another round of antibiotics and hoped that it would do the trick. After another 5 days of antibiotics the ear infection started to clear up. We decided to draw some lab work to check immune function as I just knew in my gut that they had autoimmune issues going on. I requested them to do some basic blood work, check for strep and also check their sed rates. Sully's sed rate came back at 70! and Lochlan's 17. Both elevated and in need of further testing. These lab results back up my hypothesis' and I pray that now we can move forward and locate, treat and heal these GI, immune and neurological issues we are having.
Well, I believe that although my husband may question my sanity these days.(and to tell the truth there are days I do feel crazy!) But, despite all this, regression, non-eating, withholding of poop, failure to survive school, failure to thrive, immune issues, increased stimming, irrational behavior, OCD, ODD- maybe God is telling Cody and I to "be still and know that he is God".
He can do anything. He can take our home and restore it to what it was 4 months ago or he may not. He may have other plans for us, another journey to take. Either way, God wants us to " be still and know that he is God" in the good times and in the darkest of moments. No matter what the trial, he will see us through and only through that trusting and dependence on him can we really be intimate with him and know him. So for those of you at the end of your rope, maybe try to "be still, and know that he is God" and you may be surprised at the result.
Well, things have not gone as we had wished lately. Our house has totally fallen apart, Lochlan has regressed and Sully is barely functioning. So what went wrong? How can we get back to where we were only 4 months ago? Why are we struggling with these issues again after it seemed as though we had overcome them? These are the questions I find myself asking whenever things start to go backward. Autism (any disability really) is bumpy, up and down roller coaster and it seems that the whenever we climb in progression there seems to be a fall deeper than that in which we started. The ups and downs are enough to break you down and cause worry, exhaustion, frustration, anger and depression. Every once in a while I catch myself in one of these vicious cycles and the only thing that breaks it is prayer and reading God's word. I long for someone to guarantee me that things will get better...and when no one else can give me the reassurance I need, I find it in his word, "be still and know that I am GOD."
About a month and a half ago, our Pastor of our church was out of town. Instead of someone else delivering a message they had testimonials of fellow church members about how God's grace really touched their lives. There were 3-4 speakers and 1 especially that really spoke to my heart. It was a mom of 3 or 4 children. Her testimony was about her daughter who had run a fever for 13 days and how scary it was waiting and not knowing what was wrong. During this time she reached out to her sister's in Christ for support, guidance and prayer. She and her family were just swarmed with God's love from friends and family. She really felt God's presence through the whole ordeal. If the fever lasted more than 14 days the Dr. was going to do more testing for things like cancer and other really scary illnesses. She was pleading, questioning God why and wondering how this was all happening. After 13 days and many, many prayers her daughter's fever broke. She was overjoyed. Her testimony was really to "be still and know that HE is GOD" and he can do anything!
About 2 months ago (early September) things seemed to be going well. The boys were doing well in school, other than some issues with behaviors from Lochlan. Overall though the kids seemed to be doing well, healthy and gaining weight. Lochlan's sleeping patterns were not great but things really felt as though they were smoothing out. Cody and I had felt that they boys were doing so well that we would re-introduce casein (diary) in small organic forms (derivatives really) once a day with enzymes and see what happened. At first we noticed no change. Stools were the same as before and so was behavior. Nothing seemed to change. Until, about the end of the month, we started noticing that things were changing. These changes were not immediate and some of them had started before we reintroduced dairy (we realized looking back at the whole picture). I am not convinced that casein is the culprit as much of these issues were on the rise before we realized the magnitude. I am not sure, however, that it isn't causing more stress, so with that said we will plan to remove it again. The stress of school was beginning to get to Sully and his anxiety rose to levels we have never seen before. Lochlan's behaviors and stims were getting worse as well. Both boys progressively got worse every day with eating, it started slowly and just built every day. One day Sully decided he wasn't going to eat any more vegetables. Then Lochlan started playing with his food more and more, becoming prompt dependant. He even stopped feeding himself with utensils for a while (only eating finger foods unless we fed him). Slowly they both slipped back into old terrible eating patterns. We would find ourselves prompting every bite and negotiating with them for over an hour sometimes two! They both seemed to resort back to their formula (neocate Jr.) in which they have been on for the last 2 years to keep weight. Sleeping seemed to get worse for Lochlan and he started waking up more often in the night.
Lochlan who was doing so well with potty training by the end of this last summer and in underwear, slowly started having more accidents. Before we knew it he stopped pooping again all together, holding it in. We tried almost any reinforcer we could think of but nothing seemed to work. We ended up having to use aloe vera juice and enemas to keep him from impacting. Our boy who was almost completely potty trained was back in diapers full-time.
Sully's anxiety and oppositional defiance continued to rise and our house soon became a hostile environment full of children fighting and yelling. In addition to Sully's irritability and irrational behavior, Lochlan resorted back to more aggressive behavior and even banging his head on occasion. Then about the early to mid October Sully started to run a fever (low grade 100-102). He stopped eating and his whole body just shut down. We thought at first mono, but deep down I knew it was more. I knew school was overloading him as late September he came home from school one day and was completely overloaded beyond belief. He was so upset he banged his head into our upstairs railing resorting in 4 stitches in his head. So I talked to the teachers and his aid, we had an emergency meeting. We tried to think of all these supports we could put into place. But, nothing would work as he was paranoid of being different and that alone was enough to send him over the edge. During all this ordeal with Sully and school issues, Lochlan was managing to be very aggressive and began to run off both at home and in out in the community.
Then in the midst of everything I came down with the H1N1 flu and was in bed for 4 days. I got so behind on everything! God bless my husband for taking care of sick people for 2 weeks! (and during all this time Cody has been trying to complete his commercial rating for aviation!) Just like we suspected the boys got it about 5 days after me! Once we were over the flu, Sully had been out of school almost 2 weeks already(including time off with fever). Cody and I noticed a slight change in him after being home a couple weeks and that his anxiety, although it was still there, was lighter, and seemed possibly manageable. So we decided to pull him and home school. After being sick with the flu, Sully was just not bouncing back as we had expected and he still wasn't really eating. I took him to the doctor and he had a terrible ear infection develop while being on antibiotics-for the flu (which was not clearing up). So we started another round of antibiotics and hoped that it would do the trick. After another 5 days of antibiotics the ear infection started to clear up. We decided to draw some lab work to check immune function as I just knew in my gut that they had autoimmune issues going on. I requested them to do some basic blood work, check for strep and also check their sed rates. Sully's sed rate came back at 70! and Lochlan's 17. Both elevated and in need of further testing. These lab results back up my hypothesis' and I pray that now we can move forward and locate, treat and heal these GI, immune and neurological issues we are having.
Well, I believe that although my husband may question my sanity these days.(and to tell the truth there are days I do feel crazy!) But, despite all this, regression, non-eating, withholding of poop, failure to survive school, failure to thrive, immune issues, increased stimming, irrational behavior, OCD, ODD- maybe God is telling Cody and I to "be still and know that he is God".
He can do anything. He can take our home and restore it to what it was 4 months ago or he may not. He may have other plans for us, another journey to take. Either way, God wants us to " be still and know that he is God" in the good times and in the darkest of moments. No matter what the trial, he will see us through and only through that trusting and dependence on him can we really be intimate with him and know him. So for those of you at the end of your rope, maybe try to "be still, and know that he is God" and you may be surprised at the result.
Wednesday, September 16, 2009
Update!
So today has not been great and we are seeing regression in our youngest son Lochlan. His behaviors are up, eating and sleeping are down and he is stimming constantly. These are the days when I look back to where we've come from and I try to be so thankful of all the progress we've made. We have changed nothing and there seems as of now no explaination for it. Could it be age or a phase? Who knows. I just pray that things get back to where they were and soon! 
On a another front- both boys are doing well in school and Sully is coping better than I could have imagined! He is learning how to decompress when he comes home and hopefully by Christmas he will be full day and eating lunch at school. Lochlan continues to do well at school and in ABA, thank goodness. Here are some first day of school pics!.jpg)
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Autism Song...Enjoy!
I thought that this song was awesome.
http://www.autismspectrum.org.au/a2i6i5l383l397/podcast-downloads.htm
http://www.autismspectrum.org.au/a2i6i5l383l397/podcast-downloads.htm
Two Grasses
Just wanted to post this home video of Sully 48 hours after the removal of Dairy. This is the first time that he spoke in sentence and spontaneously without the language being echolia. It still gives me chills.
Sunday, August 30, 2009
Wednesday, June 3, 2009
Feeding Success!
Lochlan ate strawberries!
So..... as many of you ASD parents know feeding is hardly enjoyable. The constant prompting, pleading, persuading, encouraging and praying is exhausting!!! Like many we have fought this battle since nearly the begining and with slow progress and frequent regression its easy to get discouraged. BUT... for those of you who are at your breaking point. HANG ON! Your hard work will pay off and when you have that success no matter how big or small somehow it will give you enough hope and power to carry on. One year ago, Sully was limited to (all casein-free) grilled cheese, chicken nuggets, fries, applesauce, juice and rice milk. Lochlan was primarily on baby food (number 2 only) with the occasional chicken nugget, potato chip or french fry.
Sully did feeding therapy for a while with a pediatric behavioral psychologist and an Occupational Therapist with very little progress. Cody and I spent hours with him at the table promising him a chip for every bite he would take just to keep a feeding tube out. This bite for bite technique worked but it was very labor intensive and time consuming. So we started promising him 2 chips for every 2 bites then 3 until he was eating the majority of his plate and then getting a handful of chips at the end. This took lots of time and we reserved chips only for mealtime and if he ate what was requested. This is crucial as if he had access to them any other time they wouldn't have been enough of a reinforcer for him to eat. Once he was eating decent we started putting one piece of non-perferred food on his plate ex. one green bean or one strawberry slice. It is important to first have success with bite for bite before you add any non-perferred foods (at least for us it was) as before he would shut down totally if anything nonperfered was on his plate. The requirement would be to first taste the nonperferred food before chips would be given. Once successfull with a taste then we would require him to bite, chew and swallow before the chips were given. Once he was successful with this technique we changed to 2 bites of non-perferred the next time and so on. (Only move to 2 bites of nonperferred when they are eating one bite independently before reinforcer.)
Hint: do only one-two non perferred foods per week and then switch. But keep re-introducing them until they will eat them independently.
This technique has given us huge success with both boys. Feeding is still an issue sometimes and our issues have changed too, but it is much better and we have much more variety. Now if I can actually get them to stop arguing at the dinner table!
So..... as many of you ASD parents know feeding is hardly enjoyable. The constant prompting, pleading, persuading, encouraging and praying is exhausting!!! Like many we have fought this battle since nearly the begining and with slow progress and frequent regression its easy to get discouraged. BUT... for those of you who are at your breaking point. HANG ON! Your hard work will pay off and when you have that success no matter how big or small somehow it will give you enough hope and power to carry on. One year ago, Sully was limited to (all casein-free) grilled cheese, chicken nuggets, fries, applesauce, juice and rice milk. Lochlan was primarily on baby food (number 2 only) with the occasional chicken nugget, potato chip or french fry.
Sully did feeding therapy for a while with a pediatric behavioral psychologist and an Occupational Therapist with very little progress. Cody and I spent hours with him at the table promising him a chip for every bite he would take just to keep a feeding tube out. This bite for bite technique worked but it was very labor intensive and time consuming. So we started promising him 2 chips for every 2 bites then 3 until he was eating the majority of his plate and then getting a handful of chips at the end. This took lots of time and we reserved chips only for mealtime and if he ate what was requested. This is crucial as if he had access to them any other time they wouldn't have been enough of a reinforcer for him to eat. Once he was eating decent we started putting one piece of non-perferred food on his plate ex. one green bean or one strawberry slice. It is important to first have success with bite for bite before you add any non-perferred foods (at least for us it was) as before he would shut down totally if anything nonperfered was on his plate. The requirement would be to first taste the nonperferred food before chips would be given. Once successfull with a taste then we would require him to bite, chew and swallow before the chips were given. Once he was successful with this technique we changed to 2 bites of non-perferred the next time and so on. (Only move to 2 bites of nonperferred when they are eating one bite independently before reinforcer.)
Hint: do only one-two non perferred foods per week and then switch. But keep re-introducing them until they will eat them independently.
This technique has given us huge success with both boys. Feeding is still an issue sometimes and our issues have changed too, but it is much better and we have much more variety. Now if I can actually get them to stop arguing at the dinner table!
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