questions

[Guest guest]

You would think today would be a good day for me since we are finally home, but

of

course, things are never that easy.... Dr. H made some recommendations for

that

I posed to some of his doctors down here & didn't get good results.

First, I spoke with the orthopedic doctor & he disagrees with everything Dr. H

suggested or

questioned. I suspected this would happen though.

Then, I faxed her notes to 's local endo. After reading the notes, he

called me &

said that if we followed Dr. H's treatment plan, he would no longer see

as a

patient. She recommended putting on Oxandrin, an anabolic steroid, to

help him

grow while keeping him on GH, Lupron, & Aromasin. According to Dr. H, this

would give

him some pubertal symptoms, but not advance the bone age on the low dose she is

prescribing. Because he would stay on Lupron & Aromasin, she says he would not

actually

have pubertal hormone levels. 's local endo believes that this could

still advance

the bone age, and giving him a steroid could worsen his insulin resistance

problems. He

says he knows of no endocrinologist here who would treat a RSS patient with

this. I am

scared to death that no matter what I choose for that it will be the

wrong thing.

It's one thing if something doesn't help him, but it's another if it can be

detrimental to

him. We have been seeing Dr. H every 6 months, and I don't know whether we can

afford

to travel there every 3 months if I end up without a local endo to prescribe

everything.

Dr. H claims that she has prescribed Oxandrin before to a few patients who had

similar

poor growth patterns like even on GH. If this is you, I would greatly

appreciate

knowing how Oxandrin worked for your child, if it affected bone age, and if

there were any

negative side effects. I was planning to fill the prescription tomorrow, but

now I am a

nervous wreck....

Kim C.

[Guest guest]

hey kim c.

i dont have the answere to your questions but our local endo stopped

seeing us as well because we are following dr h. you could always try

and call angel flight for a " ride " to nyc. jodi r used them this fall

and alicia has used them twice to get to convention. it is always a

thought this way you save on the air fare portion of the trip. good

luck and i hope someone out there can answere you questions!!

jodie c