Re: Questions - Capuano

[Guest guest]

Hmmmm. Well, I can tell you that the OGTT tests for insulin

resistance. It can also indicate what got as her

result " severe biochemical and reactive hypoglycemia " but

was NOT insulin resistant. An OGTT isn't just to test BSLs -- a

simple finger prick can do that. It is the fact that many of these

kids show IR early on, and I am guessing something about

made Dr. H concerned that he may be developing IR????

With regards to the high IGF-1 levels. I think here you may want to

get a third opinion. You are dealing with new areas. I am adding

your question to a couple that I am emailing Stanhope. Can

you email me what 's GH dosage is (actual dosage not the

units he gets). .3mg/kg/wk or whatever it is. I will email

and get back to you! Let me know as soon as you can. Salem

> I have finally spoken with our local endo about Dr. H's

recommendations at the

> convention, and again it seems they are batting heads, so I am

hoping someone, maybe

> or Jodi can answer these questions. 's IGF1 level

is high (561), not

> growing well, and hasn't had an increase in GH dosage for almost a

year. According to our

> local endo before the convention, that level was an indicator that

his dosage should be

> lowered (not increased), but he could not give an answer on why he

though

> wasn't growing. Post convention, I told him that Dr. H said you

would expect the IGF1 level

> to be high and to increase his GH dosage to whatever it takes to

make him grow.

> 's doctor says that this could put him at risk for

diabetes, and he isn't going to

> make him a diabetic just to get him to grow. Dr. H talks a lot

oabout Type 2 diabetes, but

> I never heard her say that too much GH, producing too high IGF1

levels can cause

> diabetes. Anyone know the answer to this one?

>

> Also, Dr. H wants an OGTT repeated, She thought the last one he

had wasn't completed

> right, but agian, our local endo disagrees, and says he doesn't

have any problems with his

> blood sugar. Other than looking for hypoglycemia (which I don't

think has now),

> are there other reasons to do an OGTT?

>

> I am starting to feel very anxious as I feel that we don't have

much time left to get

> to grow, and I think he is smaller than most RSS boys his

age who have been on

> GH for 3 years. In addition, got a back brace for

kyphosis after the convention,

> has been started on some new meds, including one that gave me a

good scare last night

> (almost a call to 911), and it just seems that right in time for

school to start next week,

> things keep getting harder for , but doesn't it seem that

it always goes that way?

>

> Kim C.

[Guest guest]

Kim,

You and I definitely have to talk. I feel as if things keep getting

harder for Max, too, and I, too, worry about his height and how

small he is compared to his peers and others with RSS. In fact,

I've been in a real state of depression over all of this and have

had to fight like hell to stay out of the hole that I tend to get

myself into when I feel like this. I guess it's because our boys

are older and it seems like time is running out.

For me, I worry now about Max having only three years left of high

school, what will happen after high school, Max's health, his lack

of significant growth, oh, I could go on and on. I have been crying

almost every night. Part of it is normal learning to let go and

part of it is real fear.

Please feel free to email me at magicrss@ hotmail.com. I would be

happy to discuss things in more detail. Just don't get offended if

I don't reply right away. Sometimes it's all I can do to get

downstairs to the basement office and read the messages, let alone

respond. But I do eventually. I'm making myself catch up today.

Jodi Z.