I've been on the fence about whether or not I should truly be worried about my son, and yesterday I mentioned some of this to a resident physician I was speaking to about my own history, his opinion was that I was not wrong to be thinking along these lines. So I thought I should get the opinion of those of you here who have children with these issues as well, to see if any of this sounds familiar.
I have been diagnosed with AS and I am HBLA27 positive, with axial and peripheral joint involvement, and there is an extensive family history of autoimmune disease on my side.
My 6 year old has been complaining of joint pain (toes, knees, rarely knee, back, fingers, and neck) occasionally, with flurries of times where he will complain several times a day, and periods that he will not complain at all for months. He is a good student at school, but there are periods of time that for weeks at a time he will be extremely tired or even fall asleep in class every day. I am also told by my older kids that he falls asleep on the bus fairly regularly. He has had 2 occasions that his eyes have turned completely red (all around the whites of the eyes), and stayed that way for over a week, his pediatrician said that it was probably allergies. He said that it was difficult to see, and that it was irritating, and he cried a bit. The last time that happened was almost a year ago, before I made any of these connections, and if it happens again I'm going to ask his pediatrician to consider that it could be iritis and ask for an emergency referral. He also has an IgA deficiency, which the gastroenterologist asked me to ask his ped to retest and send him to immunology for if it really is that low.
He has had gastro issues since he was 2, at that time he was not growing and was vomiting and having watery stools daily and after another 18 months or so was considered failure to thrive because of low weight that didn't increase for 2 years or so. We established a dairy allergy and eliminated that from his diet, that solved most things, but he continued to have watery stools and abdominal pain with incontinence and wouldn't eat much. They did tests for IBD and everything else they could think of and found nothing except the IgA deficiency, but they found a very large blockage in the xray. We took care of that, and are still having issues with abdominal pain and incontinence, as well as not eating much, but they say this is related to the blockage.
He also has an intolerance to cold that he is unusually vocal about, normally he is pretty quiet and laid back, low maintenance. He absolutely insists on being warm enough. I don't know that this is a big red flag necessarily with SpA, but I know that it's one of my top 5 issues, however they are going to do some sort of test for Reynaud's syndrome next time I see my rheumy, so this may be unrelated.
I know I write way too much, so I apologize, but if anyone has any input before I take this to his pediatrician, I would really appreciate anything else that I should look into or be aware of or just knowing that someone else has had a similar experience with a child. These don't exactly seem like huge scary symptoms to me so I feel a little silly getting all worried about it, but I would rather be safe. My daughter had some low back pain and I mentioned it thinking it was worth mentioning just in case and it turned out she has scoliosis! So I'm feeling much more proactive after that... Thanks for reading!