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

[Guest guest]

Thank you. We had 's party yesterday, a bowling party!!!! She had a

great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient

then she would be idopathic short statuture and well . . . " you will have to go

a few rounds with me. " So, either way it looks like this is going to happen

within the next couple of months. She has instructed Dr. Chen to be on top of

the results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

hi take a deep breath and exhail ok. i saw the coment on your children looking

like twin and it brings back memories. my children are 3 1/2 year apart my

oldest the one with RSS/SGA but mine is boy girl by the time she was 1 year and

he 41/2 everyone thought they were twins and as he got older it made him mad to

looked at as a baby like his younger sister happily after his first year of GHT

he now does not look so much like her twin.

the kind of GH we use is saizan from serono with the coolclick device it is

needle-free and i had a hugh fear of having needle in the house and giving shots

with them. also this is only one of two producted that my insuranevwould cover.

thought you might want to know this was out there

cara mom to jacob

Briggs wrote:

Thank you. We had 's party yesterday, WE a bowling party!!!! She had

a great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

Hi . Geeze. I can feel your pain and we're not even faced with any of

this yet! I just don't understand how these Dr.s expect us to pretend that RSS

isn't a big deal! It really makes me angry! I am, of course, speaking of the

Dr.s that aren't as " up " on things as Dr. H. They keep telling me....... " of all

the sydromes to have, this one is the easiest! " So what. That doesn't make it

any easier, and how do you explain this to a CHILD so that they understand? I

am so mad right now that you and your family didn't get the explainations that

you need and deserve! Dont they see that your peace of mind is non-existent

right now? Just know that my heart is with you and and even though I

don't know you, I wish I could be there for " a shoulder to cry on " . I look at

all of you and what you've been and are going through and I just

wonder...............Can I do this? Am I strong enough? Right now I'm just not

sure. Sometimes it's so hard to pretend that everything is

Okay. Give a BIG HUG and make sure she remembers that she isn't alone

in this........and neither are you.

Jeanie

Briggs wrote:

Thank you. We had 's party yesterday, a bowling party!!!! She had a

great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

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

Jeanie Kinnicutt wrote:

Hi . Geeze. I can feel your pain and we're not even faced with any

of this yet! I just don't understand how these Dr.s expect us to pretend that

RSS isn't a big deal! It really makes me angry! I am, of course, speaking of

the Dr.s that aren't as " up " on things as Dr. H. They keep telling me....... " of

all the sydromes to have, this one is the easiest! " So what. That doesn't make

it any easier, and how do you explain this to a CHILD so that they understand?

I am so mad right now that you and your family didn't get the explainations that

you need and deserve! Dont they see that your peace of mind is non-existent

right now? Just know that my heart is with you and and even though I

don't know you, I wish I could be there for " a shoulder to cry on " . I look at

all of you and what you've been and are going through and I just

wonder...............Can I do this? Am I strong enough? Right now I'm just not

sure. Sometimes it's so hard to pretend that everything is

Okay. Give a BIG HUG and make sure she remembers that she isn't alone in

this........and neither are you.

Jeanie

Briggs wrote:

Thank you. We had 's party yesterday, a bowling party!!!! She had a

great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

Thanks Cara. I haven't seen you around much. I know you are busy. I hope

everyone is doing well. I'm not sure if the twin thing really bothers

because of course right now it's fun, I'm sure, but in time as she understands

what people are really meaning it would bother her. I know there was a couple

of times at school she's been upset basically with her height and gym class.

Basketball of course. One of the boys in her class told her the reason she

couldn't make a basket was she was too short. I then asked her if everyone made

a basket but her and she said no. So I told her it had nothing to do with being

short but rather that she didn't throw the ball hard enough. The other times

were also in gym when she said everyone could jump over something or doing

something else and she couldn't. She never related that it had anything to do

with her height.

Last night she and Kelli were playing basketball in the house (we have a

basketball net and all) and she dribbles great. I asked her what she wants to

do and she said play basketball like you did mommy. Don't you know the words

out of my mouth the geneticist the day she said RSS were so you're telling me I

have a gymnist and not a basketball player. LOL. Things always come back at

me. Even if we didn't do gh, I would let her try basketball but of course would

be nervous that I wouldn't want her self-esteem hurt but things are changing. I

told her that they don't have basketball teams for her age (because they really

don't) in a few years they will.

has such a good spirit and I don't want it hurt or crushed by anything.

I try very hard to let her know that she can do anything she wants.

I've called the insurance company to find out what gh they cover and they

actually cover a lot. If anyone can give me their thoughts and experiences of

the different gh's I would appreciate it.

Good to hear from you Cara.

B

and Kelli

cara schobert wrote:

hi take a deep breath and exhail ok. i saw the coment on your children looking

like twin and it brings back memories. my children are 3 1/2 year apart my

oldest the one with RSS/SGA but mine is boy girl by the time she was 1 year and

he 41/2 everyone thought they were twins and as he got older it made him mad to

looked at as a baby like his younger sister happily after his first year of GHT

he now does not look so much like her twin.

the kind of GH we use is saizan from serono with the coolclick device it is

needle-free and i had a hugh fear of having needle in the house and giving shots

with them. also this is only one of two producted that my insuranevwould cover.

thought you might want to know this was out there

cara mom to jacob

Briggs wrote:

Thank you. We had 's party yesterday, WE a bowling party!!!! She had

a great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

Hi ,

Wishing a very Happy Birthday and many more! Sorry to hear about her

visit with Dr. H the other day and the need to repeat the blood work. We

have to do Jordan's blood work in Feb. It was supposed to be done in Nov but

the

fellows failed to call the insurance co for authorization to do the blood

work at the hospital. It seems like the hospital uses its own lab to process

the

bloodwork and Chris' insurance co uses Quest as the lab so now we either have

to pay for it or see if the insurance co will pay. Will fill you in more

about what's going on with Jordan in another post.

mom to Jordan and

[Guest guest]

I guess that I've come to terms with the whole RSS diagnosis, but as I read all

the problems some of these children have it scares me to death! Brockton has

just been so healthy so far. I know how you feel about having to repeat the

bloodwork. If is anything like Brockton, her skin is very thin and there

isn't much " meat " to help with the blood draw. It's like torture just to get a

couple vials of blood! If you're like me it's just as much torture for you to

have to be there when they're trying to hold her down and try to make her

understand that it's for her own good. He looks at me like " why are you letting

them do this to me, mommy? "

Everyone else in my family just assumes that this is just something that will

result in Brockton being short and skinny. It's too frustrating to try and tell

them that there is so much more to RSS than that! I'm sure there are a few kids

that pretty much sail right through it with no severe problems, but from the

sounds of things on here, I don't think there are many that are so lucky. It is

scary! Everything about it is scary! I just don't feel like I have anyone to

talk to about it because NO ONE around me wants to believe that Brockton may

have some serious issues related to RSS now or at any time in the future. With

the Dr.s around here not knowing much about it, I'm just afraid that they aren't

doing all the neccessary things at the right time. I'm really not comfortable

with the fact that the Endo. in Rochester said there is no reason to see him.

I'm going to ask our ped. about just doing the bloodwork for MY peace of mind.

Anyways.........I'm rambling again. Geeze. is GORGEOUS. What a

smile! Please be sure to keep us posted on the GH. I am a sponge now! I can't

soak up enough information.

Thanks

Jeanie

P.S. Explain the Prolactive and Cortisol levels to me if you can. What's the

difference and what are they tied to?

Briggs wrote:

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

Jeanie Kinnicutt wrote:

Hi . Geeze. I can feel your pain and we're not even faced with any

of this yet! I just don't understand how these Dr.s expect us to pretend that

RSS isn't a big deal! It really makes me angry! I am, of course, speaking of

the Dr.s that aren't as " up " on things as Dr. H. They keep telling me....... " of

all the sydromes to have, this one is the easiest! " So what. That doesn't make

it any easier, and how do you explain this to a CHILD so that they understand?

I am so mad right now that you and your family didn't get the explainations that

you need and deserve! Dont they see that your peace of mind is non-existent

right now? Just know that my heart is with you and and even though I

don't know you, I wish I could be there for " a shoulder to cry on " . I look at

all of you and what you've been and are going through and I just

wonder...............Can I do this? Am I strong enough? Right now I'm just not

sure. Sometimes it's so hard to pretend that everything is

Okay. Give a BIG HUG and make sure she remembers that she isn't alone in

this........and neither are you.

Jeanie

Briggs wrote:

Thank you. We had 's party yesterday, a bowling party!!!! She had a

great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

,

When in February will you be there? It seems like I will be getting 's

blood work repeated either the last Monday of January or the first Monday of

February. By the way, Yadira told me they changed the date for doing blood work.

It was always done on Tuesdays but starting next year it will be done on Mondays

and of course they are closed on all the holidays as well. I was hoping to not

have miss school. My insurance also allows for me to go to quest labs

but for some reason I think with my referral they must have paid for it. All I

owe is $45 actually twice, still not sure because my co-pay is $40 but I'm going

to pay it. I think two payments of $45 because of maybeing running two

different lab tests?

Don't forget to e-mail privately your address so that I can send you that bag.

I even found a smaller one for Jordan that will fit alot still.

Have a Happy New Year and give everyone a big hug.

B

and Kelli

lafl109@... wrote:

Hi ,

Wishing a very Happy Birthday and many more! Sorry to hear about her

visit with Dr. H the other day and the need to repeat the blood work. We

have to do Jordan's blood work in Feb. It was supposed to be done in Nov but

the

fellows failed to call the insurance co for authorization to do the blood

work at the hospital. It seems like the hospital uses its own lab to process

the

bloodwork and Chris' insurance co uses Quest as the lab so now we either have

to pay for it or see if the insurance co will pay. Will fill you in more

about what's going on with Jordan in another post.

mom to Jordan and

[Guest guest]

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:

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.

[Guest guest]

Thank you Chris. I can't get over the readings. I'm not sure if I posted this

before but Dr. Chen told us that for insurance to approve gh the reading would

have to be a 10 and for Dr. H to approve you it would have to be a 7 or 8 and

was a 6.

I'm definitely keeping this information and plan on talking to Dr. H about

this. Thank you for the site, I'm heading to it right now.

Happy New Year,

B

and Kelli

R wrote:

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:

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)

__________________________________________________

[Guest guest]

hi

jennifer.

was without a pc for a long while and buzy. everyone is doing really well

this past year for the most part has been very good for jacob we just finish his

first year of ght stats for his as of early nov. was he os now 4'2 " (5 new ins

in one year) wow and up to 54 lb. still thin but much better then ever in his

life he will turn 9 years old on the 16 of jan. the one down fall we had was

while playing at school he fell from the munkey bars and broke his arm right

above his elbo it was really bad. had to have it fixed surgyly(sp?) four pins i

about passed out when they took them out. it was a real low point for me when

this happened i felt like someone in the grand sceam of things was out to get

jacob...you know why my kid can they leave him alone..........on a high note

after two hospital and a lond wait to get the stuff done when they said he could

not eat until he was done and could handle food after the med to put him asleep.

i told them they had to get an iv of suger on him

so as to fight the non eating thing and told them why and much to my surpize

they did it right away so i felt impowered that i knew this and they acted.

as for the size jacob was really bother about that too at gym and

playingwith the kids in his grade it was so much for him now due to his birthday

and staying a year behind he is almost 2 years older then most of the kids in

his class it helps in a way because his is not the smallest or the least

cordinated and all.

i like how you found something she is good at it will help her to remember

that even if she is not the great at all things she had things she is great at

soory took so long to reply looking for the right things to say..........

cara mom to jacob

Briggs wrote:

Thanks Cara. I haven't seen you around much. I know you are busy. I hope

everyone is doing well. I'm not sure if the twin thing really bothers

because of course right now it's fun, I'm sure, but in time as she understands

what people are really meaning it would bother her. I know there was a couple

of times at school she's been upset basically with her height and gym class.

Basketball of course. One of the boys in her class told her the reason she

couldn't make a basket was she was too short. I then asked her if everyone made

a basket but her and she said no. So I told her it had nothing to do with being

short but rather that she didn't throw the ball hard enough. The other times

were also in gym when she said everyone could jump over something or doing

something else and she couldn't. She never related that it had anything to do

with her height.

Last night she and Kelli were playing basketball in the house (we have a

basketball net and all) and she dribbles great. I asked her what she wants to

do and she said play basketball like you did mommy. Don't you know the words

out of my mouth the geneticist the day she said RSS were so you're telling me I

have a gymnist and not a basketball player. LOL. Things always come back at

me. Even if we didn't do gh, I would let her try basketball but of course would

be nervous that I wouldn't want her self-esteem hurt but things are changing. I

told her that they don't have basketball teams for her age (because they really

don't) in a few years they will.

has such a good spirit and I don't want it hurt or crushed by anything.

I try very hard to let her know that she can do anything she wants.

I've called the insurance company to find out what gh they cover and they

actually cover a lot. If anyone can give me their thoughts and experiences of

the different gh's I would appreciate it.

Good to hear from you Cara.

B

and Kelli

cara schobert wrote:

hi take a deep breath and exhail ok. i saw the coment on your children looking

like twin and it brings back memories. my children are 3 1/2 year apart my

oldest the one with RSS/SGA but mine is boy girl by the time she was 1 year and

he 41/2 everyone thought they were twins and as he got older it made him mad to

looked at as a baby like his younger sister happily after his first year of GHT

he now does not look so much like her twin.

the kind of GH we use is saizan from serono with the coolclick device it is

needle-free and i had a hugh fear of having needle in the house and giving shots

with them. also this is only one of two producted that my insuranevwould cover.

thought you might want to know this was out there

cara mom to jacob

Briggs wrote:

Thank you. We had 's party yesterday, WE a bowling party!!!! She had

a great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>

[Guest guest]

Thank you cara.

B

and Kelli

cara schobert wrote:

hi

jennifer.

was without a pc for a long while and buzy. everyone is doing really well

this past year for the most part has been very good for jacob we just finish his

first year of ght stats for his as of early nov. was he os now 4'2 " (5 new ins

in one year) wow and up to 54 lb. still thin but much better then ever in his

life he will turn 9 years old on the 16 of jan. the one down fall we had was

while playing at school he fell from the munkey bars and broke his arm right

above his elbo it was really bad. had to have it fixed surgyly(sp?) four pins i

about passed out when they took them out. it was a real low point for me when

this happened i felt like someone in the grand sceam of things was out to get

jacob...you know why my kid can they leave him alone..........on a high note

after two hospital and a lond wait to get the stuff done when they said he could

not eat until he was done and could handle food after the med to put him asleep.

i told them they had to get an iv of suger on him

so as to fight the non eating thing and told them why and much to my surpize

they did it right away so i felt impowered that i knew this and they acted.

as for the size jacob was really bother about that too at gym and

playingwith the kids in his grade it was so much for him now due to his birthday

and staying a year behind he is almost 2 years older then most of the kids in

his class it helps in a way because his is not the smallest or the least

cordinated and all.

i like how you found something she is good at it will help her to remember

that even if she is not the great at all things she had things she is great at

soory took so long to reply looking for the right things to say..........

cara mom to jacob

Briggs wrote:

Thanks Cara. I haven't seen you around much. I know you are busy. I hope

everyone is doing well. I'm not sure if the twin thing really bothers

because of course right now it's fun, I'm sure, but in time as she understands

what people are really meaning it would bother her. I know there was a couple

of times at school she's been upset basically with her height and gym class.

Basketball of course. One of the boys in her class told her the reason she

couldn't make a basket was she was too short. I then asked her if everyone made

a basket but her and she said no. So I told her it had nothing to do with being

short but rather that she didn't throw the ball hard enough. The other times

were also in gym when she said everyone could jump over something or doing

something else and she couldn't. She never related that it had anything to do

with her height.

Last night she and Kelli were playing basketball in the house (we have a

basketball net and all) and she dribbles great. I asked her what she wants to

do and she said play basketball like you did mommy. Don't you know the words

out of my mouth the geneticist the day she said RSS were so you're telling me I

have a gymnist and not a basketball player. LOL. Things always come back at

me. Even if we didn't do gh, I would let her try basketball but of course would

be nervous that I wouldn't want her self-esteem hurt but things are changing. I

told her that they don't have basketball teams for her age (because they really

don't) in a few years they will.

has such a good spirit and I don't want it hurt or crushed by anything.

I try very hard to let her know that she can do anything she wants.

I've called the insurance company to find out what gh they cover and they

actually cover a lot. If anyone can give me their thoughts and experiences of

the different gh's I would appreciate it.

Good to hear from you Cara.

B

and Kelli

cara schobert wrote:

hi take a deep breath and exhail ok. i saw the coment on your children looking

like twin and it brings back memories. my children are 3 1/2 year apart my

oldest the one with RSS/SGA but mine is boy girl by the time she was 1 year and

he 41/2 everyone thought they were twins and as he got older it made him mad to

looked at as a baby like his younger sister happily after his first year of GHT

he now does not look so much like her twin.

the kind of GH we use is saizan from serono with the coolclick device it is

needle-free and i had a hugh fear of having needle in the house and giving shots

with them. also this is only one of two producted that my insuranevwould cover.

thought you might want to know this was out there

cara mom to jacob

Briggs wrote:

Thank you. We had 's party yesterday, WE a bowling party!!!! She had

a great day. We then went to TGIFriday's for dinner and they sang (which took

forever). And of course the great Dr. H visit today.

Okay here it is in a nutshell. In August had her bone age done and

argenitine (sp) test done. The bone age looks good I suppose she never

commented but it read a total at 4.66 and at the time she was four days shy of

being 5 years and 8 months, although her fellow Dr. Chen said 5.6 years of age.

The blood test - SHE FAILED. I knew this was going to happen. Although I

didn't ask but what does it exactly mean if she failed. Dr. Chen told us that

for insurance companies to prove GH it would have to be a 10 and for Dr. H to

approve it would have to be like a 7 or 8. was a 6.something. The

problem now is that her prolactive hormone level is high. So, we have to run

the tests over and now do the clonidine test. As you may know were were unsure

about doing GH but we've been well . . . almost feeling bullied - no I'm just

kidding but Dr. H did say, after re-doing the tests again, if it shows she is

growth hormone deficient, we have no choice she has to have gh

because it is the standard of care. If she is not growth hormone deficient then

she would be idopathic short statuture and well . . . " you will have to go a few

rounds with me. " So, either way it looks like this is going to happen within

the next couple of months. She has instructed Dr. Chen to be on top of the

results and that Dr. H and us be notified immeidately. Either way of the

results, gh will be ordered and if she fails, then we have to do an MRI.

Driving home I didn't say much to Randy, I didn't know what to say and I

didn't want to talk about it because I was feeling in my heart - she's right we

have to do this. She explained to about people shouldn't think she is a

twin of her 2 1/2 year younger sister (who got a full exam today as well) and

that kids will start babying her and teasing her which I have seen start to

happen. So finally Randy started the conversation (thankfully after getting

out of the city), and I said, in my heart I know and feel that we have to do

this and he agreed. We both agree that we don't want to do the blood work again

but what can you do. We also want 's cardiologist to give his blessing

especially since she runs an abnormal EKG.

By the way, if anyone can give me information on the different gh's out there.

Dr. H was asking us and we told her we have no clue about any of them and she

didn't give us any information or tell us to look up any. I know there is

genotropin which is what the first endo was telling us about and I've heard of

nutropin. If anyone can direct us into researching - my husband would be most

appreciative. He does the bulk of the research and then gives it to me to read

as well but he does all the searching.

Thank you all for all your support and believe me, I will need it more than

ever now. Oh Dr. H showed the inject ease and the syringe and did it

into the examining table and then took the needle out and left the syringe and

inject ease with us. She also pushed the inject ease on to show her that

she would feel the thump of that and not the needle. She also talked to

about not going crazy for the blood work and of course like her mom she sat

there and smiled at Dr. H and when she got in the car her first words were Mommy

I'm worried about the medicine and blood tests. Dr. H will hear the screams

soon enough.

Oh in August supposedly weighed 15.2 kg (which I think was said wrong

after reading it) but now is 14.9 (YIKES) and is 102.9 - translation she is 32.8

pounds and 40.5 inches and her 3 1/2 year old sister is 14.0 kg and about 39

inches.

B

and Kelli

Jodi wrote:

Yep, Happy Birthday!!! )

Jodi R.

>

> I hope has a wonderful birthday today. The weather is nice,

> it's relatively warm.... You could not ask for a better day in

> December.

>

> Jodi Z

>