Re: Update on ALyssa

[Guest guest]

wow what a trip. iam amazied at how well she has grown. it must feel great. i

hope all the other things work out well.

cara mom to jacob

Dayna Carney wrote:

Well, several of you emailed me about our trip to NY last week so if you

don't mind I'm gong to post a general email, but feel free to contact me

privately if you would like. We caught a nasty little cold in all that

brisk cool air and I still have laryngitis!

Alyssa has been doing very well. She made drastic strides in caloric catch

up after her tube was place about 18 months ago. She went from 17lbs and 31

inches just shy of her 2nd birthday to 27lbs and 38.5 inches. Nearly

unbelievable, with no growth hormone she went form 10% in height to over

50%. We noticed some under arm odor at last years convention and have

mentioned it at each endo visit since. They took a bone age then as well

that was within 2 months of her chronological age. Boy were we lucky!!

So where are we now? Dr. H is pleased with her height/weight, she has some

subcutaneous fat now. (ooooh love those big words, with I could get rid of

MY subcutaneous fat!). We did another bone age and it has advanced to 5yrs

3months in the past year and Alyssa is only 3.33yrs. Dr. H said she has

never seen a bone age advance that quickly without a child first being on

growth hormone. She was stumped and promptly stated she needed to research

that. So with all allusions of great progress falling out her eight story

window, she ordered a battery of tests for our local endo (who is her former

fellow) to run soon. She did not note any signs of insulin resistance but

wants to determine if that is a mitigating factor. She is also testing for

GH deficiency. So it would appear we are now looking at starting GHT as

well as treating our 3yr old for early adrenarche.

So in light of the recent questions of why do people go all the way to NY

(we are from KS) to see Dr. H? All her Dr.'s here, including her endo were

so incredibly pleased with her progress. They said she wouldn't need growth

hormone and wow just look at her, are we sure she has RSS?? Surprise! Dr.

looks beyond the obvious and obsessively checks for anything that could be

going wrong. Boy am I glad.

Well, there is our update. We are still absorbing our new info and are

making arrangements for all of the tests to be run. Anyone else with a

child this young in Adrenarche who can offer any words would be welcome.

Also, Jenn I would love to know more about the info you gathered for

.

Thanks!

Dayna, Mom to Alyssa