Aa
A
A
Close
Avatar universal
pls help son with low cortisol failure to grow
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!
Cancel
4 Answers
Page 1 of 1
Avatar universal
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.
Comment
Cancel
Avatar universal
Comment
Comment
Submit Comment
657231 tn?1453836403
I am so sorry for your son...

I would contact the magic foundation and find a good endo that specializes in all growth issues - it may or may not be just IGF-1 but something genetic or some other pituitary issue.

That being said, cortisol can be an issue as well. So I would hunt down a doc who has more ideas!  You need a neuro-endo who has the expertise to find the right skills to get the testing he needs.
Comment
Cancel
657231 tn?1453836403
Comment
Comment
Submit Comment
Avatar universal
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!
Comment
Cancel
Avatar universal
Comment
Comment
Submit Comment
657231 tn?1453836403
Thank you for coming back and giving an update! I am glad your son recovered from the steroid doses... sadly the docs don't realize the consequences of the inhalers.

It does pay to be persistent!
Comment
Cancel
657231 tn?1453836403
Comment
Comment
Submit Comment
Your Answer
Avatar universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Submit Answer
A
A
Recent Activity
Avatar universal
Blank
Sana2016 joined this community
Welcome them!
May 25
Avatar universal
Blank
BarbieDob01 emmadob Comment
May 22
168348 tn?1379360675
Blank
ChitChatNine commented on Cindy's status
May 19
Top Thyroid Answerers
Avatar m tn
Blank
gimel
MI
657231 tn?1453836403
Blank
rumpled
Northern, NJ
Adrenal Insufficiency Community Resources
RSS Expert Activity
233488 tn?1310696703
Blank
Marathon Running Done Over Many Yea...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
233488 tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
748543 tn?1463449675
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Thyroid Answerers
Avatar m tn
Blank
gimel
MI
657231 tn?1453836403
Blank
rumpled
Northern, NJ