Sorry I did not get onto this forum yesterday, but I will try to answer your questions today! We have a lot of materials for you to have to help your son, and educate everyone that is not listening to him.
Please call me today at 415-831-8782 and we can talk, and I have some materials that you can pass out at the school and elsewhere. We have some business card sized CAPS information cards that have the main symptoms for CAPS on them, and other info about the syndrome that he could have in his backpack or pocket. Also, we have a very detailed CAPS medical guidebook that was written by the leading experts on CAPS that may be helpful.
In regards to Crohns, my husband and his brother have that, and my middle son has CAPS. He used to have a lot of bowel issues before going onto medications, and no one knew why. Now there are some research articles published that have found some connection with GI issues, especially Crohns, IBD and other issues and autoinflammatory diseases, and some diseases have the same area of genetic mutation or Crohns and autoinflammatory diseases.
There are a few patients with CAPS that are having more significant GI issues, despite medications than expected, and they still do not know all that is going on, but the experts are working on it. One patient was also found to have food allergies, and celiac disease (Gluten issues) on top of her unusual CAPS mutation (not in the normal region, and her family has a few people with the mutation that do not have symptoms, but her mom has the disease,) By the way, they are in your area of the world too. I need to get you two connected, so please call me!
Yesterday was Rare Disease Day, and we had a lot of projects going on, and I did not get to everything! Sorry to miss your message. We had people on TV with a Rare Disease rally in Chicago, and many other things for the day, plus CAke Boss re-aired the episode with Jen's daughter!
On top of that, CAPS was on House MD- but it was based on a rare variant CAPS, not the traditional symptoms or most forms of CAPS and was a bit overdone. If you see it, realize that it is NOT based on most CAPS, and was overly done for dramatic effect. Nice to see an autoinflammatory disease get featured though, and it will likely draw some attention to this rare disease.
The case they likely based it on was someone in the UK that had a more sudden onset in his 40's but does not have the genetic origin for CAPS. They really should have been clear on that, since it will likely scare and confuse many people.