I am at a loss-behavior

Hope - posted on 01/02/2011

Hi Marissa,
I am on the same page as Sheila. This sounds like my DS. I am new here and my DS is not diagnosed on the spectrum...yet? He is diagnosed with Eosinophilic Esophagitis though since 18mos old. He is now 8yrs old. Life has been difficult for us especially from 4yrs old and on. He is a good kid but very oppositional, argumentative, etc when he does not want to do something. I mean he has gotten to the point where I feel he cannot be reformed. He cannot and does not learn from example, or consequences. We can take all of his video games and toys away and still nothing! Rewards charts did not work, you name it==dead end. Well, I have been doing a lot of research and from what I've read, this may be a case of "a healthy child is a happy child". Well, I don't think my DS is healthy or feeling well and it is getting in the way of his behavior. He does not have a clear head or settled tummy in which to focus and actually behave or even learn from example or consequences. You see with us, EE is caused by delayed onset allergies from a protein in the foods he eats which causes inflammation in his esophagus or his digestive tract. When he was younger, he almost always had severe slimy phlemmy diapers and phlemmy vomit. He had 7 endoscopies while doing the elimination diet in order to find out which food was causing this, well we never found out and stopped trying.(long story-won't get into that now) He stopped vomiting but still had diarrhea all the time. His GI doc said this never goes away only by removing the culprit food. His body is just finding other ways to cope with it. He is not vomitting but the pain is still there and hence the behavior issues. This leads me to the next connection. I've read that gluten and casein act like opiods (sp?) on the brain hence causing AS symptoms. So whatever the case, whether it's GI issues alone that are causing the AS symptoms or AS kids and GI issues going hand in hand. Does that make sense? Not sure which it is but I do believe that children that are not healthy to begin with are difficult and misbehave. Our therapist even told me that 1st you deal with the medical problems and then you take care of the other stuff like getting a diagnosis from a psychiatrist, etc.because it is not fair to assess a child that is not feeling good and you cannot get a true picture of what is going on. Now I do believe that M is not feeling well, poor thing. I wouldn't feel good either. Look into the medical stuff 1st and maybe everything else will fall into place. The only thing I'm not sure of is are the GI issues stand alone problem causing AS symptoms or is it AS and GI issues together needing other interventions. I don't want to do the GFCF diet alone for 6 mos only to find out that it's not helping enough and we need to try more treatments. I need something to work immediately. I can't wait another day. Life in our house is very hard. It seems like everything we have tried does not work and this is our second try at diet changes. Anyway, look into his GI stuff as you change his diet. You may see changes fast. Good luck.

Marissa - posted on 01/02/2011

We did GF/CF about a year and a half ago when we were first told our little one was on the spectrum. He had a dairy allergy and a wheat intollerence. He has since outgrown them. I didn't see any marked difference in behaviors at that time but I didn't realize there's a lot more involved to GF/CF. We lived 45 minutes to an hour from CHOP and go there for his neurologist. We will be going back there in February as he did say there was something neurological going on but didn't want to put any guesses on it in September.

Today we went to the mall as a family and he was off the wall! He was not walking appropriately (dragging his feet instead of picking them up) and he kept falling. IMO, this is sensory seeking behavior. We've caught him toe walking with his shoes off as well.

Sheila - posted on 01/01/2011

Hi Marissa,

Quick story. I came to a school new and was told to "look out" for this boy that would be in my class come September...grade five, and I was told how disruptive, angry, etc this boy was.

Come September, I met a beautiful boy. Turns out, he was undiagnosed with a previously undiscovered GI issue and that summer he was diagnosed and began treatment.

You have described, to me, a little boy who might be in constant distress because of physical issues. If this is the case, then he is always "on edge". Add to this spectrum related issues and you have the perfect storm for a very unhappy child.

I have to agree with Stacy. I would look into his physical issues first. Is there a children's hospital in the area? HAve you attempted to limit his diet? He could have lactose (dairy) issues, celiac (wheat)....I know a lot of people have found their children improve when on a very strict diet. Our pediatrician feels that this is because once a child feels better physically, you can tackle the "behaviours" in a much easier fashion.

I hope you find your answers and your little boy is feeling better soon.

Sheila

Stacy - posted on 12/31/2010

With his stomach issues, the first hing I would look at is diet. My DS was very aggressive until we removed all artificials from his diet (dyes, preservatives, etc). We saw improvement within a week. A LOT of kids on the spectrum have GI issues that are almost always cleared up by going gluten and casein free. Casein (mostly found in dairy) will be out of the system in a week, gluten (mostly wheat products) takes longer. May be worth a shot.