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.
Friday, November 13, 2009
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!
Tuesday, May 26, 2009
Supplement Updates
Just wanted to update our supplements as we have gone back to Super Nu Thera. Lochlan wasn't tolerating the ASD plex and it was upsetting his stomach. So far the boys continue to do well and Sully really seems to be more mellow and able to cope with stressors better.
AM
500mg Inositol (twinlabs)
250mg Inositol/250mg Choline (twinlabs)
Lunch
1/2 tsp Super Nu Thera w/ P5P
4 cod liver oil soft gels (nordic naturals children's)
1 oz Aloe Vera Juice (akins brand)
1 pro-defense chewable wafer probiotic (kirkman labs)
1 AFP chewable enzyme (houston) / or 1 enzyme-complete w/ isogest (kirkmans)
1/2 cap very berry blend multi-mega antioxidant (solaray)
1 tsp calcium/ magnesium citrate
1/2 tsp Amino acid support (kirkmans)
1/2 scoop Intra-cell Gen 2 (ourkidsasd)
500mg Inositol
250mg Inositol/250 Choline
Supper
1/2 tsp Super Nu Thera w/ p5p
1 oz Aloe vera juice
1 pro-defense chewable wafer
1 AFP chewable enzyme / or 1 cap enzyme complete with isogest
500mg Inositol
250mg Inositol/250mg Choline
1 zinc lozenge (30mg) w/ slippery elm (kirkmans)-before bed
AM
500mg Inositol (twinlabs)
250mg Inositol/250mg Choline (twinlabs)
Lunch
1/2 tsp Super Nu Thera w/ P5P
4 cod liver oil soft gels (nordic naturals children's)
1 oz Aloe Vera Juice (akins brand)
1 pro-defense chewable wafer probiotic (kirkman labs)
1 AFP chewable enzyme (houston) / or 1 enzyme-complete w/ isogest (kirkmans)
1/2 cap very berry blend multi-mega antioxidant (solaray)
1 tsp calcium/ magnesium citrate
1/2 tsp Amino acid support (kirkmans)
1/2 scoop Intra-cell Gen 2 (ourkidsasd)
500mg Inositol
250mg Inositol/250 Choline
Supper
1/2 tsp Super Nu Thera w/ p5p
1 oz Aloe vera juice
1 pro-defense chewable wafer
1 AFP chewable enzyme / or 1 cap enzyme complete with isogest
500mg Inositol
250mg Inositol/250mg Choline
1 zinc lozenge (30mg) w/ slippery elm (kirkmans)-before bed
Saturday, May 2, 2009
Vaccines- We are poisoning our children!
Here is a link to the generation rescue site (Jenny McCarthy's site) that has info regarding vaccines and autism. My goal is to help educate so each mother/father can make their own decision-one that considers all the information-not just what the govt wants you to know.
Please check it out.
http://www.generationrescue.org/evidence-science/05a-autism-and-vaccines.htm
Please check it out.
http://www.generationrescue.org/evidence-science/05a-autism-and-vaccines.htm
Monday, March 2, 2009
A Starting Place
First of all I just want to say that over the past year we have been greatly blessed by God with great workers, friends, family and professionals. A few years ago I had no idea what autism was and now I can't remember life without it. All the children and their families we have met along the way touched us and we are so proud to be where we are today. Now some people wonder where we started. Let me tell you:
(Just as a side note- we did not do any chiropractic treatment until February 2009. I would encourage people to evaluate the structure of the spine first as it is crucial to helping the body heal itself. I am thankful that we have met a great chiropractor here in Des Moines that is passionate to heal children with autism and I wonder where we would be today if we had started out in the beginging with having the body completely aligned and working properly. So really the first thing I would tell people to do is see a good chiropractor who believes in treating autism biomedically and make sure that the body is properly aligned so it can work most efficiently. However...)
The first decision I made was to improve the boys' diet. I did lots of research and it just seemed to me like the easiest thing to start with. No possible side effects and we'd all be eating better.
Also the body will not absorb properly unless it is healed! So how do you heal it? Our children (especially those more suseptable to damage-premies, other birth complications, GI issues the list goes on and on), their bodies have been fighting from the beginging. Environmental toxins, vaccine toxins, drug toxins (either passed from mother or prescripton drugs given to baby) these all tax the body and when the body is busy fighting off toxins and virus' it has a hard time doing the job it was made to do-grow and learn. So first step is to clean up diet- if there are GI issues (diarrehea or constipation, ear infection, skin rash or lack of eye contact) my first suggestion is to go completely off dairy (casein). It takes about 48 hours to really get it out of their system but you should results at least within 3-4 days. If there are no significant results then it becomes a personal choice to either stay off and see what happens as more time goes by or add it back in and watch for negative symptoms. Either way no harm done. I will warn you- my kids too had a very limited diet and it was scary as they would only eat things with dairy in it. So when we went off dairy they had to eat totally new foods. Amazingly they did and they learned to like new things, unfortunatly they still have somewhat limited diets but at least there is no dairy and their diets are improving. Next eliminate all food dyes, high fructose corn syrup, enriched foods and any genetically engineered foods. This will help with mood and sensory issues. Finally limit sugars and any other processed foods and keep a food diary so you can figure out what foods are problem areas. Also keep in mind that if a food is craved obsessively than it is probably not good for their bodies and is acting more like a drug.
Second of all you have to remove other toxins that could be damaging or occupying the bodies energy such as prescription drugs, chemicals in lotions, soaps, and so on. This can be tricky and its nearly impossible to rid your environment of all but making a conciencous effort really helps and doing it little by little. I started by changing laundry and bath soaps then moved on to shampoos and lotions and then look at what you cook with and what you use in the microwave. Keep in mind that traditional medicine has a place in the world just be aware that everytime antibiotics are given #1 the good bacteria is also killed off and #2 Yeast thrive. So if antibiotics are necessary make sure you take precautionary measures and increase probiotics.
Third- add in vitamins and supplements. I know every kid is different and what worked for us may not work for you. Sooo, here is a starting place.
1. Probiotics- EVERYONE needs probiotics. Good bacteria is necessary to keep the balance.
2. Enzymes- Help with digestion. I know that I feel much better when I take enzymes-my body doesn't need to work so hard. Our bodies today for some reason just do not have all the enzymes needed or get enough enzymes from food for digesition and adding in enzymes is very helpful. (just make sure that you start with a broad spectrum enzyme-for children- as some are very strong (enzymedica- Digest Gold) was too strong for my small son and was just too much. You can tell by their stools too.
3. Cod liver oil- this too everyone can benefit from and our kiddos especially need help with focus, attending and brian function.
4. Multi-vitamin- Kirkman's has a great multi-vitamin/wafer for kids
5. Antioxidants- these we no longer get from our food and are necessary to minimize free radical damage to the brain. We use Soloray mutli-mega antioxidant with very berry.
6. Aloe vera juice- very healing to gut and also normalizes Ph in stomach and aids in absorbtion.
7. Inositol -very effective for OCD symptoms and anxiety.
Lastly- Chiropractic care, Occupational therapy, speech therapy and ABA are also important. We found that no matter what the therapy the best chance of success is if the body is healthy so that is where we started. The body needs to function properly in order to develop.
(We also consult a DAN! Dr. and had some labs run as well but these supplements above are completely natural and things that all people would benefit from. There are links throughout my blog with research and data on most of the suppelments we give. If you can afford a DAN! dr. they are great but I found that most things are trial and error anyway and so we do minimal consulting. We choose to do nothing that can further damage the boys so we do only no risk supplements so worst case scenario we are wasting our money. Feel free to contact me if you have any questions. )
(Just as a side note- we did not do any chiropractic treatment until February 2009. I would encourage people to evaluate the structure of the spine first as it is crucial to helping the body heal itself. I am thankful that we have met a great chiropractor here in Des Moines that is passionate to heal children with autism and I wonder where we would be today if we had started out in the beginging with having the body completely aligned and working properly. So really the first thing I would tell people to do is see a good chiropractor who believes in treating autism biomedically and make sure that the body is properly aligned so it can work most efficiently. However...)
The first decision I made was to improve the boys' diet. I did lots of research and it just seemed to me like the easiest thing to start with. No possible side effects and we'd all be eating better.
Also the body will not absorb properly unless it is healed! So how do you heal it? Our children (especially those more suseptable to damage-premies, other birth complications, GI issues the list goes on and on), their bodies have been fighting from the beginging. Environmental toxins, vaccine toxins, drug toxins (either passed from mother or prescripton drugs given to baby) these all tax the body and when the body is busy fighting off toxins and virus' it has a hard time doing the job it was made to do-grow and learn. So first step is to clean up diet- if there are GI issues (diarrehea or constipation, ear infection, skin rash or lack of eye contact) my first suggestion is to go completely off dairy (casein). It takes about 48 hours to really get it out of their system but you should results at least within 3-4 days. If there are no significant results then it becomes a personal choice to either stay off and see what happens as more time goes by or add it back in and watch for negative symptoms. Either way no harm done. I will warn you- my kids too had a very limited diet and it was scary as they would only eat things with dairy in it. So when we went off dairy they had to eat totally new foods. Amazingly they did and they learned to like new things, unfortunatly they still have somewhat limited diets but at least there is no dairy and their diets are improving. Next eliminate all food dyes, high fructose corn syrup, enriched foods and any genetically engineered foods. This will help with mood and sensory issues. Finally limit sugars and any other processed foods and keep a food diary so you can figure out what foods are problem areas. Also keep in mind that if a food is craved obsessively than it is probably not good for their bodies and is acting more like a drug.
Second of all you have to remove other toxins that could be damaging or occupying the bodies energy such as prescription drugs, chemicals in lotions, soaps, and so on. This can be tricky and its nearly impossible to rid your environment of all but making a conciencous effort really helps and doing it little by little. I started by changing laundry and bath soaps then moved on to shampoos and lotions and then look at what you cook with and what you use in the microwave. Keep in mind that traditional medicine has a place in the world just be aware that everytime antibiotics are given #1 the good bacteria is also killed off and #2 Yeast thrive. So if antibiotics are necessary make sure you take precautionary measures and increase probiotics.
Third- add in vitamins and supplements. I know every kid is different and what worked for us may not work for you. Sooo, here is a starting place.
1. Probiotics- EVERYONE needs probiotics. Good bacteria is necessary to keep the balance.
2. Enzymes- Help with digestion. I know that I feel much better when I take enzymes-my body doesn't need to work so hard. Our bodies today for some reason just do not have all the enzymes needed or get enough enzymes from food for digesition and adding in enzymes is very helpful. (just make sure that you start with a broad spectrum enzyme-for children- as some are very strong (enzymedica- Digest Gold) was too strong for my small son and was just too much. You can tell by their stools too.
3. Cod liver oil- this too everyone can benefit from and our kiddos especially need help with focus, attending and brian function.
4. Multi-vitamin- Kirkman's has a great multi-vitamin/wafer for kids
5. Antioxidants- these we no longer get from our food and are necessary to minimize free radical damage to the brain. We use Soloray mutli-mega antioxidant with very berry.
6. Aloe vera juice- very healing to gut and also normalizes Ph in stomach and aids in absorbtion.
7. Inositol -very effective for OCD symptoms and anxiety.
Lastly- Chiropractic care, Occupational therapy, speech therapy and ABA are also important. We found that no matter what the therapy the best chance of success is if the body is healthy so that is where we started. The body needs to function properly in order to develop.
(We also consult a DAN! Dr. and had some labs run as well but these supplements above are completely natural and things that all people would benefit from. There are links throughout my blog with research and data on most of the suppelments we give. If you can afford a DAN! dr. they are great but I found that most things are trial and error anyway and so we do minimal consulting. We choose to do nothing that can further damage the boys so we do only no risk supplements so worst case scenario we are wasting our money. Feel free to contact me if you have any questions. )
Sunday, March 1, 2009
Supplements and Progress
This year 2009 has been incredibly awesome! We finally jumped through enough hoops with the state and both boys are recieving waiver benefits and we are finally able to afford therapy, clinics and the visits to the psychologist for both boys! A huge weight has been lifted off our shoulders and it feels so good to be able to get all the help for them that they need without having all the financial burden or weighing which one is more important at this time.
Also this year Lochlan continues to make tremendous gains with ABA and Speech therapy. He is a totally different kid and to see him emerge more and more each day is breathtaking. I never knew if we would ever get ahead of the autism or damage done to his body (immune, neurological and gastrointestinal systems) but I feel like we are head to head with it now. Lochlan's speech therapist told me that she had started an evaluation and that in some areas he was scoring WITHIN HIS AGE RANGE!!!!!!!!!!!!!! Taking into consideration that less than 9 months ago they could not even evaluate him because he had barely any language skills and now he is in his age range in some areas. What a miracle!!! I truly believe that God is at work here and that this is a testament that He can do anything! For Lochlan to gain that much development in only 9 months is impossible by human standards. And what is so amazing is that everyday we can see him gaining more and more ground.
Sully is also making huge strides. He amazes us as his intelligence surpasses mine daily! He is getting taller and is begining to learn how to deal with his sensory issues. One of our more recent issues is that he had started pulling up and at his pants obsessively all day. It became such a problem that it impaired his daily function and just walking down the hall was an ordeal. I kept thinking that this has to be sensory. Of course sensory is the most difficult kind of problem to figure out. We had also been dealing with him stomping around the house. For 35 pounds he sounded like a 3 ton elephant!!! No matter how many reminders, it was as if he couldn't help himself. I keep racking my brain for possible culprits... diet, supplements, sensory overloads. The only thing that made any sense was that my hypersensitive son was have trouble feeling his pants on his waist or his feet on the ground. So I pulled out some old undies(training pants that I made for him while we were potty training) and we gave them a shot. At first he complained that they were too tight. I kept telling him that we have to be scientists and give it a few days to collect data. He was more receptive to the idea as long as we were only doing a trial. The first day I can count on one hand how many times I saw him pulling on his pants!!! It was amazing. He no longer fights me about them and the problem is currently non existent! To handle his stomping we discovered that about 10 minutes on the trampoline would help the heavy footedness for about an hour or two. (one of our respite workers who is also a family friend suggested this)
As for supplements:
Our current supplement schedule is as follows.
Lunch: (I mix the following in a banana puree with a bit of apple/orange juice and then administer with a syringe)
1 scoop of ASD plex (millinium nutritionals)
1 cap EnZym-Complete/DPP-IV II with Isogest (kirkmans)
1 cap mega-mulit antioxidant w/ very Berry (Solaray)
1/2 500mg cap Insotiol (solaray)
1/2 tsp Nordic Naturals Cod liver oil for kids
1 cap bio-defense probriotic (kirkmans)
2mls Aloe Vera Juice (Akins Brand)-for absorbtion
Supper:
The same as above without the ASD plex.
Also this year Lochlan continues to make tremendous gains with ABA and Speech therapy. He is a totally different kid and to see him emerge more and more each day is breathtaking. I never knew if we would ever get ahead of the autism or damage done to his body (immune, neurological and gastrointestinal systems) but I feel like we are head to head with it now. Lochlan's speech therapist told me that she had started an evaluation and that in some areas he was scoring WITHIN HIS AGE RANGE!!!!!!!!!!!!!! Taking into consideration that less than 9 months ago they could not even evaluate him because he had barely any language skills and now he is in his age range in some areas. What a miracle!!! I truly believe that God is at work here and that this is a testament that He can do anything! For Lochlan to gain that much development in only 9 months is impossible by human standards. And what is so amazing is that everyday we can see him gaining more and more ground.
Sully is also making huge strides. He amazes us as his intelligence surpasses mine daily! He is getting taller and is begining to learn how to deal with his sensory issues. One of our more recent issues is that he had started pulling up and at his pants obsessively all day. It became such a problem that it impaired his daily function and just walking down the hall was an ordeal. I kept thinking that this has to be sensory. Of course sensory is the most difficult kind of problem to figure out. We had also been dealing with him stomping around the house. For 35 pounds he sounded like a 3 ton elephant!!! No matter how many reminders, it was as if he couldn't help himself. I keep racking my brain for possible culprits... diet, supplements, sensory overloads. The only thing that made any sense was that my hypersensitive son was have trouble feeling his pants on his waist or his feet on the ground. So I pulled out some old undies(training pants that I made for him while we were potty training) and we gave them a shot. At first he complained that they were too tight. I kept telling him that we have to be scientists and give it a few days to collect data. He was more receptive to the idea as long as we were only doing a trial. The first day I can count on one hand how many times I saw him pulling on his pants!!! It was amazing. He no longer fights me about them and the problem is currently non existent! To handle his stomping we discovered that about 10 minutes on the trampoline would help the heavy footedness for about an hour or two. (one of our respite workers who is also a family friend suggested this)
As for supplements:
Our current supplement schedule is as follows.
Lunch: (I mix the following in a banana puree with a bit of apple/orange juice and then administer with a syringe)
1 scoop of ASD plex (millinium nutritionals)
1 cap EnZym-Complete/DPP-IV II with Isogest (kirkmans)
1 cap mega-mulit antioxidant w/ very Berry (Solaray)
1/2 500mg cap Insotiol (solaray)
1/2 tsp Nordic Naturals Cod liver oil for kids
1 cap bio-defense probriotic (kirkmans)
2mls Aloe Vera Juice (Akins Brand)-for absorbtion
Supper:
The same as above without the ASD plex.
Friday, February 27, 2009
Inositol and Autism
Recently our psychologist who is also every bit of a DAN! dr. as our actual DAN! dr recommended that we try using Inositol for Sully's anxiety and OCD. She printed out a paper on some research that was done and when I got home from our appointment I did some further research on google. There have been a couple different papers written about the use of the B vitamin Inositol and how it could be used to treat OCD symptoms, anxiety, depression and many others. One particular paper concluded that there were no significant results on 9 autistic test subjects but that more testing is warrented. This appealed to me as there is no risk in trying this particular B (3) vitamin. I scanned quite a few different blog sites of parents of autistic children and the burden of proof was overwhelming. So many children were responding to Inositol and the results were amazing. We have come so far and made so much gain-much more than I could have ever dreamed of-with the use of supplements that it was worth a shot. My philosophy is: its worth a try as long as there is no risk. I picked up some 500mg capsules from our local health food store and started BOTH boys on 250mg 2 times a day. Within a week we were starting to see that Sully was much more calm and wasn't so high strung throughout the day. He was following directions more easily and actually would stay in time out without shouting. I also had decided to give it to Lochlan as well for mood regulation and just to see if it would have any calming effects on him. Lochlan too has been more managable and seems to be more easily redirected. I know it is still early to be so conclusive but I am hopeful as we continue that this supplement will continue to work for them. Below are some links to some of the research I came across on this vitamin. Some of the papers describe how Inositol can also be very helpful for hair pulling and skin picking!
http://westsuffolkpsych.homestead.com/Inositol.html
http://www.oralchelation.com/ingred/inositos.htm
http://www.curezone.com/forums/fm.asp?i=49840
http://autism.com/ari/newsletter/112/page2.pdf
http://westsuffolkpsych.homestead.com/Inositol.html
http://www.oralchelation.com/ingred/inositos.htm
http://www.curezone.com/forums/fm.asp?i=49840
http://autism.com/ari/newsletter/112/page2.pdf
Tuesday, January 20, 2009
Terbutaline and Autism
I have recently run across some information regarding terbutaline and autism. This comes as quite a shock to me as I was given this drug (FDA approved to treat asthma-not preterm labor!) during both pregnancies for pre-term labor. My doctor never disclosed to me that it was not FDA approved and had I known the risks I would have never taken it. This goes to show that you really have to investigate every pharmacuetical and over the counter drug before you take it-regardless of what your physician says. What really upsets me is there has been research done that suggests a correlation but physicians continue to prescribe it. The link to Dr. Kaplan's Interview is below:
http://www.usautism.org/terbutlaline_interview_autism_one_radio_082305.htm
http://www.usautism.org/terbutlaline_interview_autism_one_radio_082305.htm
Saturday, January 17, 2009
"turn on please", Irlen Screening and spidey glasses
"turn on please"
With these words I continue to take comfort that my son is healing. Lochlan who turns 3 on the 17th was non-verbal less than 1 year ago. We had little eye contact and he lived in a world all his own. As a parent of a child with autism we celebrate successes that many would overlook. This is one. Today when Lochlan had finished his ABA session, his therapist and I were talking as he played Super why (on zac browser) on our computer. His therapist was telling me that he now will say the word "spin" pronouncing the "s" sound. I turned the monitor off to prompt him to first say spin and he quickly said "turn on please". This is just one of many phrases Lochlan is now saying spontaneously (not routine phrases). "mommy what's this?" pours from his mouth in song most of the day. Lochlan now thirsts to know the name for things and will echo anything. He is manding like crazy and his self injurious behavior is almost non-existent any more. Lochlan will answer some yes and no questions (although he answers more no than yes!) and can identify many familiar objects. He knows all his letters, numbers, shapes and colors and now that he has verbal language he is able to express these skills. (We had never worked with Lochlan on numbers, colors or letters!) He has made so much progress this last year. It is hard to believe it is the same boy. He is doing very well in school, is extremely bright and has adjusted to his busy schedule with ease. His ABA therapists are ready to start discrete trials and so far he is scoring very well on the VB-MAPP.
Sully we recently had screened for Irlen Syndrome (official link under my fav links). The results were inconclusive at this time as he is very young but there is no doubt that he has moderate light sensitivity. We are going to be experimenting with lightly tinted glasses, colored paper and colored lighting. This could be very helpful in helping Sully deal with sensory overload. I know we are on the right track but it will take time to really narrow in what is all causing the overload. I was able to find him a pair of Spidey light blue tinted sunglasses that are just a few shades lighter than the color of the blue overlay he responded to at the screening. We will experiment in different settings having him wear the glasses and then we will record his behavioral response. So far we have had 2 trips to the store and one day at school with the spidey glasses and he seems to be more at ease when wearing them than without. We will continue to take data over the next few months. (Irlen syndrome is very common in adhd, autism, dyslexia, and SPD/SI to name a few. )
With these words I continue to take comfort that my son is healing. Lochlan who turns 3 on the 17th was non-verbal less than 1 year ago. We had little eye contact and he lived in a world all his own. As a parent of a child with autism we celebrate successes that many would overlook. This is one. Today when Lochlan had finished his ABA session, his therapist and I were talking as he played Super why (on zac browser) on our computer. His therapist was telling me that he now will say the word "spin" pronouncing the "s" sound. I turned the monitor off to prompt him to first say spin and he quickly said "turn on please". This is just one of many phrases Lochlan is now saying spontaneously (not routine phrases). "mommy what's this?" pours from his mouth in song most of the day. Lochlan now thirsts to know the name for things and will echo anything. He is manding like crazy and his self injurious behavior is almost non-existent any more. Lochlan will answer some yes and no questions (although he answers more no than yes!) and can identify many familiar objects. He knows all his letters, numbers, shapes and colors and now that he has verbal language he is able to express these skills. (We had never worked with Lochlan on numbers, colors or letters!) He has made so much progress this last year. It is hard to believe it is the same boy. He is doing very well in school, is extremely bright and has adjusted to his busy schedule with ease. His ABA therapists are ready to start discrete trials and so far he is scoring very well on the VB-MAPP.
Sully we recently had screened for Irlen Syndrome (official link under my fav links). The results were inconclusive at this time as he is very young but there is no doubt that he has moderate light sensitivity. We are going to be experimenting with lightly tinted glasses, colored paper and colored lighting. This could be very helpful in helping Sully deal with sensory overload. I know we are on the right track but it will take time to really narrow in what is all causing the overload. I was able to find him a pair of Spidey light blue tinted sunglasses that are just a few shades lighter than the color of the blue overlay he responded to at the screening. We will experiment in different settings having him wear the glasses and then we will record his behavioral response. So far we have had 2 trips to the store and one day at school with the spidey glasses and he seems to be more at ease when wearing them than without. We will continue to take data over the next few months. (Irlen syndrome is very common in adhd, autism, dyslexia, and SPD/SI to name a few. )
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