Okay got some more questions. Kyles doctor called me back with the results of some of the tests.
He said that Kyles ACTH level was 1892. He said this is high. He thinks that the introduction of the growht hormone was making KYle need more steroids or something. He also stated that Kyles plasma renin level was 12.5 or somthing liek that and that after introducing the growth hormone that it did something to affect his thyroid. ANyway he is saying we may have to introduce a thyroid pill as well. I am not real good with medical terms so forgive me if I am way off balance here with terms and stuff.
He said we should keep Kyle at 3 of Prednisilone for now and he started him back on the shots at a much lower dose and is working him back up on it.
He said his glucose was okay and electrolytes were ok. Um I cant really think of much more informatin to offer for feedback. I just know you guys know your stuff and would liek to hear what you guys think.
So there we have it, I assume the skin darkening was from the high ACTH right?

Yes, it was from the high ACTH...but I really wonder why this doctor keeps giving the GH if it has caused so much damage to Kyle...

yuppers...that is a pretty high acth....no wonder his skin was darkening...I don't know enough about growth hormone to comment on that end....but I will do some reading....I don't know how they interact and if there is some doubt where the growth hormone deficiency is coming from ....a 'real' issue or one caused by the steroids I don't think it can be said that it is damaging or necessary rt now....it may turn out that he indeed really truly needs it and it has not to do w/ prednisone or prenisolone....??/!! In the meantime...it doesn't sound like the doc is off target...he is keeping the prenisolone at a better level, and lowering the gh......

It can be very very frustrating and very time consuming to get all the ingredients in the soup right...

Do you get your own copies of his bloodwork results...the actual results and ranges...not just the letter that comes saying ...everything is in range..kind of letter? If not, it is really a GOOD IDEA to start now...and get back copies of all his bloodwork....a binder works well to keep it together....
If you have all the info....it would help to know what was tested and what the results were......exp thyroid....

Before starting him on anything else....I would want to 'wait and see for a couple months what happens w/ this new dosing regime...get the journal out! Also it still would be a good idea to tell him you really insists on a trial w/ the hydrocortisone to see how it affects the growth hormone......?? Do you work outside the hse? Wondering if summer would be a good time to try this as you would be able to monitor all the hc doses and not need to get the school involved....

did they retest his growth hormone this time?

Anyone who knows any good sites to read about growth hormone and the relationship between gh levels and cortisol please post them....I am not great as some of you are at finding that stuff...Wish I could help more....
must be some websites/forums out there for pediatric growth hormone issues...??!!

Diane

Diane

PS...don't sell yourself short on how much you have learned about all this in a short time.....you are doing fine...it is really stressful to have something wrong w/ our kids.....that is enough to deal with....and endocrine stuff Is Complicated....!! Just keep on reading!!
D

Cincinnati Children's / Growth Hormone

Magic Foundation/Growth Hormone


You know I still would want to be certain whether the problem is the prednisolone or from other pituitary issues. Why give something if the cause can be eliminated and normalcy restored. Since Kyle is primary his pituitary may be fine and only suppression of GH from the steroids exists...no other problem.

I agree about getting the test results and reference ranges....super important!! I think Diane has great ideas and really good advice. Can't add anymore.

(grh)

We all know steroid replacement taken too late in the day will interfer with the natural growth hormone that takes place at night. Since Kyle is on a LONG LASTING replacement I believe Hydrocortisone would be the next step. You really must find out if he would need the growth hormone if off the long lasting steroid. Besides the possibility of messing up his growth hormone.....the long lasting med is not good for him.

This endo is using old fashioned meds to treat addisons.

oops..I meant to say 'on target' w/ having raised the prenisolone dose....and lowerin the other...but I really need to learn more about this...
I also think that a trial on hc would be a good idea.....I don't think it could hurt unless Kyle is just resisting taking the meds anyway...

Jo...I knew you'd post some sites! Will read tomorrow w/ my coffee..
good night all...
D

Thanks for the replies guys. Now I have that much more to go on.
Yeah I am under teh impression that it is the steroids that could be causing the growth issue in the first place, but what do I know. I think a trial on HC without the GH would be a good idea as well but dont think I will be able to convince his doc of that. He said the longer we wait to act on the growth issue, that valuable 'catch-up' growth time will be lost. ANd we had to argue with the insurance company for months before they would even approve it, so lost some time there. BUt still of greater importance here is the fact htat this problem may go away altogether if he is on the right steroid and dose and correct itself. The doc doesnt really thing it is the steroids causing the growth problem alone. He said it may be a contributing factor. But since the hormone is made at night and Kyle takes one of his doses of Prednisiolone late in the evening, I am left really wondering about this.
SOmeone mentioned pituitary issues. I know Kyle was given an MRI I think and some other scans in the beginning and if Im thinking right it was to rule out issues about the pituitary or tumors or something. Surely to God this doc has ruled out the other causes before starting him on the shots.
When I talked to the doc yesterday he said that he was bringing Kyles case in front of his team of doctors on Thursday to get some more opinions or whatever. I am anxious to hear their input. He said he would call me back on Thursday.
I have gotten a printout before on the test results so I may post some more info if I indeed do get them in the mail.

Look at me be all rude, forgot to say the most important thing......THANKS

The team of drs will be interesting to hear .......
Perhaps you can tell the doc that unless the trial of hc is done, you will always feel unsure about the gh...and the gh is such a costly drug......
D

I agree...this is too important to not try HC and see if it makes a difference.

Hi Kylesmom, I haven't been here for a while as I have been busy, can I ask how old Kyle is. I know that if Josh was started on steroids then it would be cortisone rather than pred due to the lower risk of side effects and long term effects of being over medicated. Cortisone is easier to adjust and fine tune (also easier to under medicate to with all of lifes ups and downs)

I will try and do a search and see what I can find on the effects of pred on HGH for you, I am usually good at finding stuff like that :) If Kyle is primary. why is he on HGH? were his levels low? If his growth was stunted prior to dx of addison's, being treated should have allowed him to start growing again. Josh's height is still closely monitored, he isn't growing as fast as he should but he continues to grow and has gained 3 lbs in the last year. Josh has a working dx of "intermittent hypoalsodsteronism" or "selective adrenal insufficiency" for the past 5 years and continues to pass testing, he has had two adrenal crisis and is considered a medical anomaly and he is now ten. Brief history so you know where we are, his endo is brilliant and so is his pedi so we are very blessed. I will post links that I think are relevant for you when I find them.., It will give me something to do while I am supposed to be resting as much as possible....

www.rxllist.com under drug interactions (page 3)
Excessive glucocorticoid therapy may prevent optimal response to somatropin. If glucocorticoid replacement therapy is required, the glucocorticoid dosage and compliance should be monitored carefully to avoid either adrenal insufficiency or inhibition of growth promoting effects.

Limited published data indicate that growth hormone (GH) treatment increases cytochrome P450 (CP450) mediated antipyrine clearance in man. These data suggest that GH administration may alter the clearance of compounds known to be metabolized by CP450 liver enzymes (e.g., corticosteroids, sex steroids, anticonvulsants, cyclosporin). Careful monitoring is advisable when GH is administered in combination with other drugs known to be metabolized by CP450 liver enzymes.

Everything else I am finding is more on insulin resistance etc rather than the way pred and HGH interact. HGH does impact on underlying thyroid issues either with a polyglandular or pituartity origin and can cause it to show up. I will look more tomorrow and see what I can find.