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stillwaiting

severe autism, gastro problems/suspected crohns?

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Hi,

I havent posted here for a long long time just wonder if anyone has experienced any similar problems. I could write a book but will try and keep it as short as possible.

My son is now 13, has severe autism, non verbal. We started to have problems about 2 years ago, when he began changing from a settled, calm, happy child to a child that cried a lot and began to self harm which has escalated significantly. He has lots of problems around food overeating, then not eating, requesting food then refusing it. He's been on various medications treating him for anxiety and depression, citalopram, fluoxtine, risperidone, sodium valproate etc none of which has improved things. He has a poor quality of life now does not enjoy any activites he previously did like trampolining, swimming and soft play all of these are now a trigger for him to become upset and self harm (nipping his body, headbutting walls and floors.) Hes had a lot of bowel problems over this time, treated with movicol, sodium picolsulphate. His bowel was shown to be impacted at one point and he had a full clearout with picolax then he had an enema. Ive been pushing all the time that I believe his sypmtoms are physical and recent blood and stool samples have indication infection in both so we are now been referred on to another paediatric gastroenterologist at a different hospital,the reasearch I have done is pointing me to suspect that maybe he has crohns.

Anyone had any simiae experiences?

Thanks in advance

 

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No I don't, but wanted to reply so you didn't think your post was just floating around in the ether.

 

My son has had various anxiety medication too. Some of them have caused him to have diahorrea. When we stopped the medication the bowel problems stopped.

 

We are now trying fluxotine again.

 

If tests have indicated an infection, then that needs to be identified and treated.

 

If he is impacted and constipated isn't that contrary to Crohns?

 

Medications can all have side effects. Is it possible to gradually wean him off them all and wait and see what he is like totally off medication? As well as having continual loose bowels, our son also practically stopped speaking and stopped doing things he liked. The change when we stopped medication was huge.

 

BUT due to his anxiety and OCD we have started again on a low dose of fluxotine to see how he is.

 

Could his fluctuation in eating etc be due to a sensory processing disorder? My son goes through phases of always seeming hungry, and then not appearing hungry at all.

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My son is now 21 but he had horrendous bowel issues as a child and teenager.His stomach was that swollen and yet they insisted he wasnt constipated.He would go weeks without a bowel movement then hed produce a small tot sorry to be graphic but his poo would stink to high heaven,it was also the consisyancy of toothpaste and very sticky he had constand anal leakage.We were given movicol ,pecessarys alsorts of stuff.In the end id to look at his diet and cut out all the processed foods it wasnt easy but it helped a bit.he had stool tests and we were told that some sort of bug that lives in the bowel had got out of controll and that this was causeing his issues so he was given anti biotics specific for the bug.It went on for years then as suddenly as it all began it just stopped.he now has normal mvements no issues at all.Its just one big mystery why wed years of problems.

 

You say youre son is 13 my son is a lot older than youres but his behaviour which had been settled to a certaine degree kicked off round puberty ,wed more tantrums and agro as he hit his teens than we ever had as a toddler.he grew out of that also as he matured.

 

I hope ive helped if only in showing someones been through something similar.

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Hi, my husband has aspergers (undiagnosed as yet) he has ulcerative colitis, which is quite similar to crohns. His flare ups are triggered by stress & we have found some stuff on the Internet indicating a link between asd & colitis. I suspect he has some sort of anxiety disorder which has lead to this, as well as alopecia. They're both auto immune related & both affected by stress, obviously he's unable to deal with certain stress & tends to internalise it. Having a flare up of his colitis causes him anxiety too, it can be a vicious cycle at times! Once we knew what we were dealing with we manage it with medication quite easily, steroids & mesalazine.

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