digestive disorders linked to Autism??

Marla - posted on 11/02/2008 ( 9 moms have responded )

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I have a son who just turned 2 at the end of September and at his 2 year well visit our pediatrician reccomended we contact the Early Start program to do a speech evaluation (he's not speaking yet--actually in the past couple weeks he has been trying to say Yes and please, but no mommy or daddy or even no--he just shakes his head no) as well as see a behavioral pediatrician for some behavioral issues he's having...mainly tantrums at a drop of the hat even during fun activities like playing or outside at the park. I also mentioned what I consider "zoning out" and repetitive actions like pouring water out of a container in a bath tub for a long period of time. He does make eye contact, gives hugs and kisses and understands and usually listens to basic commands...so in that sense when people talk about the spectrum, I don't feel he has autism.

We went to the speech evaluation at the end of Oct. and at the end of the evaluation we were told we were candidates for the program and that they would be sending a therapist weekly to our house to work with our son and he would be evaluated again in about 6 months to see if there is any progress. I have yet to actually see the report but they did tell me they thought his condition was serious and that we caught it at the best/earliest time possible. They also agreed with our perdiatrician that he needs to be evaluated by a behavioral pediatrician which I am still trying to secure an appointment with...

I just recently read an article in US weekly 10/27/08 where Jenny McCarthy spoke about her son and autism as an injury related to vaccines(from the mercury--thimerosal, used as a preservative in shots)...something that has always concerned me. When asked How did you "recover" Evan (her son)? she mentioned Generationrescue.org as the first place she found that basically said to cut out wheat and dairy from the diet because her son's system couldn't break them down and that digestive disorders are linked to autism. She stated that it turns them into an opiate making them stoned or drunk. That sentence flooded me as I thought about how I always commented on my son being "zoned out" and when I thought about it even more it was usually after a meal in his high chair. My son also had a 3 week stay at a Childrens hospital Oakland when he was 3 months old...horrible ordeal, but he did leave with some type of digestive disorder that they were never able to diagnose. They just put him under this umbrella of malabsorption/malnutrician and took him off my breastmilk (thinking he may be allergic to something I was eating) and put him on a perscription formula called Neocate....non dairy. He was also taking enzymes mixed in food and numerous types of vitamins and some type of sodium for a while after he was released from the hospital--they had thought he inititally had cystic fibrosis because I was a genetic carrier of the diseaase but then ruled it out as genetically impossible because he didn't have the same gene as I did. In any case, he has never tolerated/wanted milk (soy, hot chocolate, etc..) when we started offering it to him around 15 months and we consequently give him juice fortified with calcium to this day. In terms of his height and weight I am told by my GI doc as well as my pediatrician that he is progressing like any normal boy his age.

I wanted to know if anyone had more information on digestive disorders and autism being linked? I have a long road ahead of me, but I thought this forum might be a good start. I still need to talk to my pediatrician and our GI doctor about this recent finding as well. Thanks for taking the time to read my story...

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Fallon - posted on 11/04/2008

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Oh and it is hard to compare some kids to others that are on the diet. I truly believe that the diet helps those who are sensitive to those protiens. If you have 10 autisic children in a room, statisics say that 6 may have sensitivity to Gluten and Casien. The diet doen't work for everyone, but if 60% can be helped in any way to concentrate, then it is worth it. Even if 60% is an F.

Fallon - posted on 11/04/2008

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I have to agree with the last post, though Jenny's books give hope, there isn't such a thing as being cured. If you go off the diet the symptoms return. Cure means to live a normal life with no strings. diabetics aren't cured till they don't need insulin. Also her son has a lot of other symptoms like sezing. That is not a symptom of Autisim, that is a symptom of something else that can cause autisic like symptoms. Like a brain tumor is more common to cause what her son has. I don't doubt he has autisim, I just doubt that if she takes him off of the diet and educational intervention, his symptoms will return and he may begin to regress. I am the first to hope for a cure but I am realistic in knowing that the best thing is early intervention and the diets are a plus. I am curious how ever about the carb diet mentioned.

Kim - posted on 11/04/2008

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HI I WORK WITH KIDS ON THE SPECTRUM AND I HAVE A COMMENT ABOUT JENNY M BOOK AND THE DIET. I HAVE A FEW KIDS I WORK WITH ON THE GLUTEN, DAIRY FREE DIET. WHILE SOME PARENTS FEEL IT HAS HELPED NONE HAVE COME CLOSE TO RECOVERY. I FEEL THAT JENNY'S BOOK GIVES PARENTS FALSE HOPE. I JUST DONT FEEL IT WORKS FOR ALL KIDS. ALL THE KIDS I SEE DO HAVE SOME TIME OF DIGESTIVE PROBLEMS AND THE DIET HELPS WITH THAT . I JUST DONT SEE ANY DIFFERENCE IN THE BEHAVIORS OF THE KIDS ON THE DIET THAN THAT OF THOSE NOT ON IT

Shawna - posted on 11/04/2008

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I have not read all the posts on here but I wanted to throw out another suggestion, has anyone heard about the scd (simple carbohydrate diet) ? it is made for people with chrones or syliac but I had seen it used with children with autism and have seen great results especially with anger outbursts.

Kerry - posted on 11/04/2008

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i dont know much about immunisations causing problems, but i do think my son has always had a problem with his digestion. And after the first immunisation i noticed a major change in his behaviour even as a baby, he would turn away from me, cry at me and be generally naughty baby. I sent my husband to get the second immunisation and the behaviour got worse i think, so i did not have any more done . when he turned 6 going in to school we had the doctor give him one shot that would cover what he had missed because i told the doc he would get one try and one only. His behaviour to me was almost like he blamed me for the pain of the shots.
isnt there an organisation of people with a lot of celebrities involved that is looking into the autism/allergy/digestion/immunisation issue?

Kerry - posted on 11/04/2008

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Welcome maria, I see you have started on a long road, i wish you luck with it. My son is now 21 and there are still things we find that upset his digestion. He will vomit up his dinner if i try something new and it contains something his stomach is sensitive to. Here in Australia we have aharder time finding out what is going on, or getting information. I found things out the long way. Sometimes simple things like fruit can upset the system. My son loves oranges but cannot have them often as they make him hurl, usually a few hours after he eats them. Beetroot (the natural colours) he can tolerate minimal amouts of foods but if i tip the scales or he hides and eats them, he will be sick. As he got older he realized what was going on and then wouldnt touch the things that make him unwell (this can show as bowel difficulties, hard stools and pain). I found cereals tha did not contain added sugars and were whole grain where possible, and keep those with added honey etc for treats and only occasionally.
I gave him special formula when he was a baby also, it was the only thing he could digest, this he had until aroudn 18 months then i gave him fresh goats milk. I made him cakes etc with goat milk and using the whites of eggs, sometimes the goats milk could be replaced with fresh squeezed orange juice. They still taste quite good.
Also if your son sees you trying the foods he needs to eat, he may feel better about eating them. Fresh, is always better. I dont know much about wheat allergys though i would probably blame the bleach used to make flours white, more than anything else.
There is so much to look at. What possibilitys do you have of seeing a dietitian to help sort through some of this and help you look for allergy pointers?
It will be great if you can find some help from this circle,, keep us posted on how things are going.

Maureen - posted on 11/03/2008

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Marla,

My son is 32 months old. Wish i had a phone number to contact you with. MAN COULD WE TALK. it has been brilliant and heartbreaking. We've been on the GFCF diet for 5 weeks. it HAS HELPED.....but there is so much in question. i'm a believer and an skepic.

there are so many questions i have too...doubts, fears, hopes....

xo xo

Maureen

708-833-7635

Kathleen - posted on 11/03/2008

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Marla,

check out the DAN! organization. Like the other poster, We had the same results almost immediately a change in behavior. Also with some biomedical interventions we have seen progress we added zinc and other suppliments to help with the low levels in his system and have seen behavioral changes. DAN! has changed our lives. My son no longer stares out the window saying the same word 150 times and yes my son has intestinal problems a lot of DAN doctors think that alot of the symptoms of autism are brought on by bad intestinal problems. Check out the kid friendly ADHD and Autism cookbook by compart and laake. it address this in very simple terms and is very easy to read. good luck and best wishes with your son.

Fallon - posted on 11/03/2008

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Hi Marla, My son turns 2 on Nov. 7th. We noticed something was wrong when he hit 18 months and stopped talking, infact everything he had went away and it was like pulling teeth to get him to even point to what he wanted. He would lay on the floor and bang his head when I would even mention the word Juice. Like by me saying it triggered a tantrum. I guess we can go back as far as 14-15 months when he could stand or sit infront of a TV for the full length of Finding Nemo or Toy Story. How many 1 year olds do you know that can do that. Slowly as this summer went on his fits got more intense and would be triggered by any little thing, like waking from a nap on his own too early or too late. Someone leaving the room to use the washroom. It was only a little over two weeks ago that he was offically evaluated by a develop. ped and was diagnos. with ASD. He hasn't been put on the spectrum quite yet being only 2, but shows all the classic signs. Anyways, as soon as 3 days later I started him on the gluten free casien free diet. I would have never thought that a diet could help, but I had him tested last Jan. for food allergies. (he always seemed to have a cold, so the doctor said lets test for food allergies) He tested high for Milk products (Casien), Wheat (Gluten), and Egg Whites. It was easy at the time to cut out egg products like merague and mayo. (cakes and cookies had no physical reactions I could see like when he ate scrambled eggs) I even took him off of whole milk and put him on fortified rice milk. I never saw a physical reaction to wheat or milk, so I let himhave a littl bit of cheese and yogurt/ice cream. Nothing that you or I could ever have. Just if he had pizza I would pull most of the cheese off. My son is also a major carb-avor. He loves cereal and toast, and pizza bread. I never saw anything that would concern me of his healt. I never knew that these allergies could be the 1st clue of his disability. So because I have prior knowledge of his Gluten and Casien sensitivity, I started him on the GFCF diet. Now it has only been 11-12 day since we started, He hasn't thrown a fit that lasts ove 10-15 seconds. He hasn't gotten so irritated that he has to bang his head off the floor for a sensory sensation. He still loves to watch his pixar movies, but I can pull him out of his "transes" with calling his name or using a key word like cookie to get his attention. It may not be the diet, but it is the one thing that has been altered since May, since we noticed his regression.



Here is the key, mulitble books and web sites claim that Gluten and Casien protiens (to those who are senitive) can't be broken down. The toxins build up in the body, and act like a drug. If you think about people that have sugar problems. Like when there is too much insulin in the system and not enough sugar. The irritation causes people to act out and say things that make no sense to a normal person or even that person when their chemicals are in order. Or think of someone who is drunk, there are all types, but sometimes it causes a "Mean" Drunk. Someone who is normally nice; never hurt a fly, but a few drinks later turns into the most physical and abusive person you never saw coming. That's the idea, and illiminating the toxins for an autisitic child can help them focus and be less irritated (digestively and with their sensories). A little Food For thought. Do some research and maybe ask your doctor about doing a blood test for food allergies/sensitivity. (there is a huge coralation to autisit children and these food sensitivities) You may find more information that can help curve your child's learning skills. If they have turned into a picky eatter this is the time to try something new before they get so hooked on chicken nuggets and french fries. Besides you would be surprised how many things you normally give your child have these protiens in them that could be adding to their irritations.



I hope it helps, like I said do the research first, but they said I probably wouldn't see anything for 1-3 months, and I've seen a change in just more eye contact and less fits in 2 weeks.



Sincerely,

Fallon

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