I had posted but used a mobile device a few days ago, but it must not have actually posted! Sorry for that.
There is another family in AK that has a child with CAPS, but they are near Anchorage. I can find out where they are going for care for you.
There are patients that can have CAPS, but do not have the mutation found on the standard genetic testing for this disease. There are some new ways to test for somatic mosaicism for mutations for CAPS, but this is a specialized testing program that is done at the NIH, and a few other research centers worldwide. More info is on our website at: http://www.nomidalliance.org/capsgen.php
We have a helpful comparative chart of autoinflammatory diseases too:
Vomiting with flares happens with a number of autoinflammatory diseases, and also there are some that have this that have CAPS too.
On another note, your child's "clock work" flares may fit with some other conditions, and PFAPA does involve elevations of Il-1 beta. Here is an article to read about it:
Does your child have chronic elevations of the CRP, ESR and other labs, or are they only elevated during flares?
Has your child been tested for HIDS too? Take a look at the link for the comparative chart.
We have a private patient group for autoinflammatory diseases at: https://www.facebook.com/groups/nomidalliance/ that you may be interested in joining. We also have a CAPS only group too, but many are in both groups. rareconnect.org also has a great CAPS community that we help to moderate too.
Ilaris may help, but if you are not certain it is CAPS, it may be hard to get it approved with your insurance.
Feel free to contact me at email@example.com as well.