Re: October Walkathon and Talk with Endo

[Guest guest]

Hi

I am glad you got some news. Dr. Starkman pretty much said the same

thing about Dr. H. He too had met her at convention. Both Dr.

Starkman and Silverman were speakers at the convention. He said he

was quite comfortable treating Kedhar with growth hormones and we

are going for the consult/nurse educator etc on Oct 14. All my

research in existing literature shows that it best to start GHT as

early as possible. You may want to consider making your appointment

sooner.

-Malathi

Kedhar (RSS), Sahana 2.5 year old twins

[Guest guest]

- meant to add. My son is also not growth hormone

deficient. I have read a number of papers (my sister is a scientist

and I have access to many publications), that growth hormone should

be given if the velocity of growth is slow. For RSS patients the

sufficency of growth hormone in tests is misleading. That

information was given to be by Dr. Starkman and I confirmed it in

various sources of research papers.

-Malathi

[Guest guest]

hey jen!!

glad to hear about the company maych my moms work does that too so i

am going to look into it.

dr h is the one that said we have to take him to the ped for the

monthly weight checks and he has been having a bone age scan done

every 6months since he was 2months old. so i dont know what to say

as far as what he wants done. except i would still go see dr h and

take it from there.

jodie c.

> Hi everyone

>

> I just spoke with my sister about the walkathon. Not only is she

on

> board to walk with me BUT I remembered that the company she works

for

> will MATCH whatever she is able to raise!!! Yeah!!! She said that

she

> will make sure that the pledge sheet makes it all around her office

> and friends as well. I'm going add my list to hers this way its is

> more for her company to match.

>

> Now about the endo. I finally got a call today from 's endo

> regarding her blood work. It took him 2 weeks to get back to me

but

> what can you do. Anyway, he said her blood work is all normal and

> fine. Her next visit with him is in December. I mentioned to him

> that we are waiting to see Dr. Harbison. He knows her from

convention

> because he was there too, Dr. Silverman. Anyway he said if I

wanted

> to fine but he feels more than comfortable treating . He

said

> there was no need to go to the peds office every month for weight

and

> height checks just for tracking that when she comes back in Dec we

> will see how she has done since Feb. I mentioned that even though

she

> doesn't show a growth hormone deficiency being that she is RSS what

> about growth hormone and he said we will see how she has done since

> her last visit and take it from there. I asked about do we need

to

> do a bone scan to start tracking her and he said no not until we

see

> she would be starting puberty and then one would be done. He also

> said that during exams and routine blood work we would track her to

> watch for early signs of puberty and her growth.

>

> I told my husband the news and said to him that I still want to

have a

> consultation with Dr. Harbison and see what she has to say.

>

> So I suppose that is all good news!!! Between my sister's company

> matching her pledges and the blood work what a way to start the

week.

>

> Thanks for listening

>

> B

> 4 1/2 RSS and Kelli 2 NON RSS

[Guest guest]

hi jeniffer and malathi-

our endo at chop started christopher on ght in feb of this year. we

then had an appt with dr h in april only to find that yes he grew

3cm but lost a pound. he needed to do caloric catch up growth

before starting ght to get the full benefit of it. our other endo

never said anything about that. we stopped the ght as per dr h. for

now and put him on the periactin. he gained a pound a month from

the end of april until july. we are now waiting for his growth to

platue and then we will restart the ght. and cont with the

periactin. the kids need to take in 1/2x more calories than normal

while on the ght to be able to maintain their weight as they grow

taller.(correct me if i am wrong jen s. or jodi z.) so i would look

more into it before starting it.

jodie c.

> Hi

>

> I am glad you got some news. Dr. Starkman pretty much said the

same

> thing about Dr. H. He too had met her at convention. Both Dr.

> Starkman and Silverman were speakers at the convention. He said he

> was quite comfortable treating Kedhar with growth hormones and we

> are going for the consult/nurse educator etc on Oct 14. All my

> research in existing literature shows that it best to start GHT as

> early as possible. You may want to consider making your

appointment

> sooner.

>

> -Malathi

> Kedhar (RSS), Sahana 2.5 year old twins

[Guest guest]

, great news all around.

Interesting information from Dr. Silverman. We definitely need to

get this GUidebook written so we can educate the physicians,

especially the good endocrinologists like him!

Bone ages are recommended annually, but usually after about age 5 or

6. If adrenarche signs are spotted, or pubertal signs, one would do

the blood tests that he is talking about and more frequent bone ages

(every 6 months).

Dr. Harbison has always said that each child needs a " captain of

their ship " (medically). You will have to decide who the captain is

going to be. Dr. Silverman sounds uncomfortable with you going to

him and to Dr. Harbison. He may be willing to confer with her for

advice, but would want to be her " captain. " After you see Dr.

Harbison for the second opinion, you can then decide what makes the

most sense for your family. Please don't hesitate to contact me if

you have any questions or need advice.

Salem ()

> Hi everyone

>

> I just spoke with my sister about the walkathon. Not only is she

on

> board to walk with me BUT I remembered that the company she works

for

> will MATCH whatever she is able to raise!!! Yeah!!! She said that

she

> will make sure that the pledge sheet makes it all around her office

> and friends as well. I'm going add my list to hers this way its is

> more for her company to match.

>

> Now about the endo. I finally got a call today from 's endo

> regarding her blood work. It took him 2 weeks to get back to me

but

> what can you do. Anyway, he said her blood work is all normal and

> fine. Her next visit with him is in December. I mentioned to him

> that we are waiting to see Dr. Harbison. He knows her from

convention

> because he was there too, Dr. Silverman. Anyway he said if I

wanted

> to fine but he feels more than comfortable treating . He

said

> there was no need to go to the peds office every month for weight

and

> height checks just for tracking that when she comes back in Dec we

> will see how she has done since Feb. I mentioned that even though

she

> doesn't show a growth hormone deficiency being that she is RSS what

> about growth hormone and he said we will see how she has done since

> her last visit and take it from there. I asked about do we need

to

> do a bone scan to start tracking her and he said no not until we

see

> she would be starting puberty and then one would be done. He also

> said that during exams and routine blood work we would track her to

> watch for early signs of puberty and her growth.

>

> I told my husband the news and said to him that I still want to

have a

> consultation with Dr. Harbison and see what she has to say.

>

> So I suppose that is all good news!!! Between my sister's company

> matching her pledges and the blood work what a way to start the

week.

>

> Thanks for listening

>

> B

> 4 1/2 RSS and Kelli 2 NON RSS