Hi, I haven't posted here in a few years. My son (diagnosed at age 11) has Crohn's and adrenal insufficiency. We cannot seem to get him off steroids without him becoming very ill. That is not why I am here though. At about
age 12 Steven started experiencing shock like symptoms (skin becomes icy cold to the touch and botchy. he feels bad when this happens and a little mentally slow) while walking or doing any activity. These symptoms usually took 20-30 minutes of walking to start. Now 5 years later his symptoms come on with only 5-10 minutes of walking and even emotional stress can cause it. He also has his temperature fluctuations and has dropped into the 95 degree range without much warning. Extra steroids do bring his temperature back up, but the process makes him feel terrible. His blood work is actually not too bad but his CRP is always elevated inspite of his Crohn's being somewhat in remission. We have a G.I, Endoncronologist, and Neurologist.....none of them have a clue. Dysautonomia has been brought up as a possibility. He has also had psych evaluations to rule out panic attacks. He seems to be going down hill.
I am very afraid for my son and was hoping maybe someone out there has had something similar and could point us in the right direction.
Thank you,
Laura
Steven- Humira, cortef, allergy meds, amitriptyline and occasional migraine meds.
12 surgeries for per-rectal abcess
possible stroke (ruled as stroke from MRI...later changed to possible brain cyst)