Re: Happy Birthday to ! and Dr. H Visit

December 28, 2005

,

I can read the concern in your message - and the fear. But you know

that Dr. H. is on top of things and the last thing you want is for

there to be something " wrong " and not have you know about it. Since

she appears to be gh deficient, then, as you know now, you have no

choice but to use gh. Many of us have had the same fears that you

have and we understand completely.

I am not sure of all the gh brands these days. We have used

Humatrope for years with Max (14+ years!) and now the insurance

company sent out a letter that they will no longer approve any gh

other than Norditropin, or something like that. Fortunately, we

have more than enough to last until January 17 when Max sees Dr. H.

again. I'm not sure if the change will have any effect on Max or

not. Dr. H. used to tell us that they were all basically the same,

but there are subtle differences. I'll ask her when we see her,

okay?

As for giving the shots, if you have to go that route, just come

over here and you and can watch Max do it to himself. He

might even let YOU do it so that you can practice on him. He's done

that before. He likes and feels protective of her. He would

not mind one bit.

I know it is difficult to hear things that could be not quite right

with your child, but at least you have an expert handling this for

you. That is what you want. And please call me if you need to

talk. You know I'm home until Tuesday - and you can always stop by

my classroom. (I can't wait to go back to work. I've been eating

all day long, every day! I need to get away from food!)

Lots of love,

Jodi Z

December 30, 2005

Talk to le Sudak. She is very approachable and will help with

the gym thing. If you are hesitant, let me know and I will say

something. She is a great and compassionate person.

Jodi Z

December 30, 2005

Hi B.,

It is really interesting to me to hear about 's abnormal hormone levels.

Charissa's cortisol level has always been o.k., but her prolactin level has been

" borderline high " and her estrogen level has been " borderline low " for several

years. She has had one GH stim test since ending GH therapy 6 years ago and

those levels were o.k. for an adult level. Our endo here has a wait-and-see

attitude because she is puzzled and doesn't know what to make of it, so I am

VERY interested to hear what Dr. H. says about . I have thought that

something was out of whack with ever since Charissa ended GH therapy - on GH her

hair was thick and curly, and after stopping GH her hair got much thinner &

straight (with some body). Plus Charissa's " monthly cycles " (which started

late) are not monthly at all - more like every 6 - 12 weeks and relatively light

periods. At your next appointment you might mention what I said about

Charissa's hormone levels in case she needs to know there are

others out there - we haven't seen her in awhile, but Dr. H. will probably

remember us since we are from Alaska. I could give you more exact info, if you

need it.

in Alaska

(mom of Charissa, age 21 and *not* RSS, but had all the issues, plus some)

RSS-Support wrote:

Date: Fri, 30 Dec 2005 03:17:03 -0800 (PST)

From: Briggs

Subject: Re: Re: Happy Birthday to ! and Dr. H Visit

Thank you Jeanie. It's weird, my husband and I always held the position that

even after seeing Dr. H that in our hearts we believe is very mild RSS

and that if we were told were to reach 4'10 " on her own we would be happy

with that and not do growth hormone therapy. Well, that was totally turned

around on us.

I'm a little confused where Dr. H is at because she does not believe is

GH deficient but after reading her report yesterday, her growth hormone levels

are normal which would mean she is not deficient but her prolactive level is

high and her cortisol levels are low which I think are throwing Dr. H to say she

wants it run again along with the clonidine test. It wasn't comforting to hear

Dr. H discuss the blood results with Dr. Chen and use the words " this is very

interesting to me. "

We know we have to do this at this point. We, like every parent out there, feel

bad for our child who has to go through the testing again. We are actually a

little more comfortable about the needle thing since she showed us how small it

is and using the inject ease has totally put my nerves to rest. As I always told

my doctor, you never have to worry about me becoming a drug addict because I am

afraid of needles. I don't mind donating blood, it's the needle and something

going in that bothers me. But like it is called inject ease.

So, I need to schedule her blood work AGAIN (UGH) and then after that she will

order the gh and start that. Depending on the results, we will find out if she

is gh deficient or not and whether or not she will need an MRI done. It sounds

like to me when Dr. H was talking is that the brain is not telling the body to

shut off the prolactin but that's one of the things that are interesting to her

so we'll find out soon enough.

Thanks for your throughts,

B

and Kelli

---------------------------------

Yahoo! for Good - Make a difference this year.

December 31, 2005

Hi ,

I found alot of info on the internet about high prolactin levels, but I think

the best and most comprehensive info is here:

http://www.medic8.com/healthguide/articles/prolactin.html

That is an interesting thought, wondering about the connection between the

prolactin and the adhesions has had. I didn't see anything about it when

I was researching on the internet, but I wasn't looking for that info either.

Great question for Dr. H though!

Our endo doesn't think there is any connection between GH therapy & the

prolactin levels, but the prolactin is probably contributing to the irregular

cycle. Charissa's 17 year old sister & I do not have this problem - in fact you

can almost set your watch to the length of our cycles (lol!). And I'm 48 years

old & still no hint of menopause. Charissa also has low bone mineral density

and her bone age was always delayed, up to the last time it was measured 2 or 3

years ago (it was about a year behind then). But that isn't an issue, sort of a

gray area, as she approached adult age.

The endo doesn't know if there is a connection between GH & prolactin in

Charissa's case. Charissa was GH deficient though, and 3 MRI's (all done in the

last 5 years) have not gotten a clear picture of the pituitary gland. The best

look showed that it might be small, but there is definitely no tumor. The

initial stim tests showed almost no GH in her body - I'll never forget the

results of the initial test, the levels were measured as 0.0, 0.0, 0.0, 2.4 &

4.2 and a level of 14 was considered normal. She started GH therapy (Protropin)

in 1987, when she was 2 years, 5 months. She weighed 13 lbs 11 oz & was just

under 29 inches (she wore size 9 month clothes). She did not have any negative

side effects from the GH therapy, but when we started Periactin in 1989 at 4

years, 3 months her growth rate doubled. She was a part of one of the first

trials on the use of Periactin on growth rate of GHD kids - no negative side

effects from the Periactin either. I'm sure that the

Periactin was what got her to her adult height. She finished GH therapy in

2000, at 15 years 4 months. She was (and still is) just over 5 ft 2 inches.

Her weight fluctuates between 112 and 120 lbs. I was really surprised that the

stim test done after finishing GH showed an acceptable adult GH level - I

thought she would be GHD for life. I'm thinking of asking for one more stim

test this year (just in case), before our insurance coverage of Charissa runs

out (she turns 22 next October).

I hope this helps. It helps *me* to be able to pass on info that might help

someone else, somewhere down the line!

in Alaska

(mom of Charissa, age 21 and *not* RSS, but had all the issues, plus some)

RSS-Support wrote:

Date: Sat, 31 Dec 2005 04:07:21 -0800 (PST)

From: Briggs

Subject: Re: Re: Happy Birthday to ! and Dr. H Visit

Thank you so much and I will print this out and bring it with me. Now finding

out that I think the prolactin hormone has to do with being a female right? I

probably should have reminded Dr. H that has labia adhesions since she

was a baby (it's where the vagina closes shut). At one point last year it was

almost totally closed and the urologist put her on premerin (I think that's what

it was). When I told Dr. H at our first visit that's what she took, she swung

around so fast and her eyes pierced me and she was ready to flip out. She wasn't

concerned about puberty but about her bone age. I'm wondering if there is any

connection.

Does the endo there think the gh therapy and prolactin level being high has

anything to do with her menstral cycle being not " normal " . I'm sure they

questioned you about yours and all. My family doctor is very interested in

so much that when he first says why are you here today he then right away

says, never mind you, how is your daughter and what's going on. He was the one

who also found this listserve for me (actually his wife). Anyone in NJ need a

good family doctor - he's great.

Thank you thank you thank you for that information and I will be sure to let Dr.

H know about Charissa. When did she start gh, did she have any side effects and

how well did she respond to it?

B

and Kelli

R wrote: