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Son has autism and Crohn's, anyone else have experience with this?

Thu, April 11, 2013 10:03 AM

My son has autism, and although he has learned a few rote phrases to request items and basic needs, he does not have the words to tell us how he feels physically or emotionally. He was diagnosed with Crohn's in late 2011, after suffering from a few weeks of worsening cramps and non-stop diarrhea. Our son cannot tell us if his stomach hurts or if anything else hurts, or if he is having any other symptoms. He was diagnosed because when this all started, the symptoms were so severe that we could see them, there was no mistaking what was going on. He is now on Remicade, after nothing else helped, and we are worried about how Remicade might be making him feel, that he could not tell us. We continue to watch him like a hawk for signs of pain or discomfort, but we also know that he has a high pain tolerance, and that if he is having discomfort, he might think it's "normal" and not show any signs of it. I have been unable to find anyone else to talk to, who has a child in this situation. I am hoping for any advice about monitoring possible symptoms in a non-verbal child (he's 12) with Crohn's, if any social stories were helpful for you, or any sort of pain scale that was useful for a nonverbal person? Even just someone who understands what it's like, would be nice to talk to. And please, I don't want information about diets or leaky gut or GFCF or any of that - we have been through it all and that's not what we need right now. Thank you :)

sally ellen
Joined Apr 11, 2013

Thu, April 11, 2013 5:34 PM

Reply posted for sally ellen.

I recently saw a feature on a talk show where a dad invented an APP. His son is also non-verbal and it has become a life-changer. Their child is finally able to communicate with them using an ipad. You may want to check into it.

lizzies mom
Joined Sep 9, 2009

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