Re: Re: GHD (Marilyn)

March 18, 2002

Penny wrote:

>I started using the ultra-fine short needle is this what

> you are using? I too was having a difficult time with the standard BD

> insulin syringes

We have the Ultra-fine also. still bruises, but I think mostly

because she will move. There are times I'm worried se will break off the

needle - wouldn't that be a fine mess?!

> what type of nutrition problems are you having this is a constant

> battle for us she eats cont. feeds but does not absorb well now we

> have a metabolic dr from Riley,s involved do your drs freak out over

> her size? ours sure do like I can do anything about it.

used to get 3 cans of Pediasure overnight, as well as whatever else

we could get in her during the day orally. She started taking the 3 cans of

Pediasure during the day - 2 at school, one at home - plus a carton of milk

at lunch, and other liquids. She also started eating more soft-solid foods

(not hard, just not baby foods anymore) and has been getting enough

nutritionally by mouth since about November (around Thanksgiving). She did

so well, the nutritionist said she felt that ate enough calories

orally that the button could come out. Well, come January we did that. The

problems have been told here before. The short story is that the g-button

stoma did not close and within a week, lost 9 pounds! It took 2

visits to Riley Surgery clinics, 2 ER visits (at 2 different hospitals), and

finally an admit (all in that one week) to get her closed up. She had been

leaking anything she ate or drank after the button came out and started to

refuse to eat because she knew it would hurt and it wouldn't stay in anyway.

She wanted to eat because she was hungry, but didn't because of the pain.

Stomach acid absolutely ruined her skin for three days until we pitched an

absolute (pardon my French) bitch fit!

Anyway, we are slowly getting back to normal eating again. It will take

much longer, I'm afraid, to get back those precious pounds lost that week.

The Endo doc. freaked about the no gain in height or weight. Not so much

the weight after hearing the reason it had dropped off. But he was

disappointed in the lack of change in her height. But when you really only

go every 4 months, I think that there might be times that these kids - with

or without hormone - may not have growth times. We are only providing a

direct replacement for something doesn't naturally produce. I know

Kenny grows in spurts, then has a " rest period " . I'm sure Kenny doesn't

stop producing it during his non-growth times. Why could that not apply

with kids on GHT? Just because they are getting the therapy, that doesn't

necessarily mean there has to be growth in that time frame. And has

never had huge growth. He was just disappointed because she had almost

reached the growth chart's bottom line last time in the office; and now she

stayed the same, so was below the chart again.

This isn't the doctor we started with. That gentleman retired and we now

see Dr. . The first Dr. always said that wouldn't have

spectacular growth, but if she grew at all, that would be a success. This

second Dr. evidently doesn't catch that idea and expects more. I think if

he really went back and looked at where she's been and where she is - versus

when he started with her - he'd be surprised and much more pleased with the

overall results.

Penny, or anyone, any more questions just e-mail me and I'll try to answer

the best I can.

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (12, ADD) and (9, CHARGE+)

Wife of Rick

Indianapolis, IN

oganm@...

March 18, 2002

Marilyn, What endo doctor did you see at riley? Would you recommend him/her?

may have to see a endo doctor to check his growth hormone, He is very

short and has not gained much weight at all in the last 2 years. I just would

like to know a good doctor in case we do end up taking . Thanks.

mom to almost 8 years old.