When I found this forum, you seemed so knowledgeable I thought I'd ask for help!
My almost 11 year old son has not been feeling very well for the past year. He is not gaining weight and not growing taller at the normal rate. (This growth problem has gone on for 2 or more years.) 6 weeks ago he had an emergency appendectomy and has been mostly in the bed since. (The appendix was fine.) He has been to a ped GI specialist who couldn't find anything wrong on a CT scan that made him think he needed to investigate further. He did check cortisol which was so low it was immeasurable. He had it rechecked at 8am and it was still immeasurable. After reading about cortisol, he has all the symptoms of low cortisol. He has no signs of increased ACTH like darkened skin. His thyroid was thoroloughly tested with bloodwork and all was normal with that. His bone age is 7 and his height is 53.75" He has fallen from the 75%ile at age 3 to under the 25%ile now. His weight is 55 lbs under the 5%ile. He has asthma and takes Advair inhaled steroid with an aerochamber. The endocrinologist is referring us back to pulmonology because he is assuming the Advair is the culprit. I think it may be more than Advair. He tested his IGF1 levels and they were good so he decided not to do the ACTH stim test nor the MRI of his head because the evidence for pituitary problems is not that strong due to the thyroid and IGF1 being good.
I am concerned that they really don't know what to do with my son and I am worried about him. He is sick and tired of being sick and tired and losing hope of improvement. They do not want to just give him hydrocortisone because of the growth issues and hoping to determine the root cause, but they are short on ideas on what those may be.
Thanks for any help you can offer!
Hang on in there i feel like you could be talking about my son,everything is the same even down to the appendectomy.Its been a long hard road but hopefully i will get answers to day that i can share with you.
An update, my son is doing so much better. They did give a physiologic dose of cortisol after 2 adrenal crises that sent us inpatient. I found a more compassionate endo who reassured us that we were on the right track but that it would take a looong time to recover. They determined the cause was the inhaled corticosteroid(Advair in this case.) After we stopped it, he began to slowly get better. After one year he still was not feeling well on a daily basis. He started to grow, still not feeling better and finally now 22 months after the emergency appendectomy and 20 months after this post, 20 months after stopping the Advair he seemingly is back to normal! I advocate for all parents to trust your gut and get a second opinion even if it offends someone. Find out as much as you can about this issue! You are the person most knowledgeable about your child and the one who cares the most for them!
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