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Re: Roll Call - S.

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1. S.

2. Manhattan Beach, CA (southern california on the beach just

south of Los Angeles)

3. , age 8 (January) RSS; 52lbs and about 52 inches tall

and Tyler, age 7 non-RSS (don't know but 75%'tile in height and

25%'tile in weight)

4. Born 1/13/96 at 39 weeks gestation, 5lb 2 oz and 17.5 inches

long. They had estimated her prior to be more than 7lbs. Doctor

was obviously clueless....

5. started GH and Periactin in Oct '00 when she was 37 " and

27lbs or so. Added Zantac and Prevacid along the way, and most

recently Miralax for constipation. Except for infancy prior to meds

for reflux, she has always been a great eater -- just can't get

enough calories into her to grow without Periactin. She currently

takes in more than 1,800 calories A DAY!!!!!

6. Peds Endo -- Dr. Madeleine Harbison in New York (yes, we fly

there every 3 months) -- Mitch Geffner at CHLA when we can't get to

NY; Geneticist: Rena Falk at Cedar Sinai (awesome); Peds GI --

Fred Watanabe at CHLA (incredible); Orthopedics - Skaggs,

Chief at CHLA;

7. Diagnosed at about 2 years of age by Genetics at Yale Children's

Hospital; confirmed at 3 years of age by Genetics at Cedar Sinai in

LA; and then again at 4 1/2 years of age by Dr. Harbison (whew, if

someone had changed their mind I would have gone crazy)

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Can anyone tell me what Dr. H recommends as far as the weigh to height ratio for

a child to begin GH therapy? Is it 25% or less?

Cindy F.

[Cindy Funk] Re: Roll Call - S.

1. S.

2. Manhattan Beach, CA (southern california on the beach just

south of Los Angeles)

3. , age 8 (January) RSS; 52lbs and about 52 inches tall

and Tyler, age 7 non-RSS (don't know but 75%'tile in height and

25%'tile in weight)

4. Born 1/13/96 at 39 weeks gestation, 5lb 2 oz and 17.5 inches

long. They had estimated her prior to be more than 7lbs. Doctor

was obviously clueless....

5. started GH and Periactin in Oct '00 when she was 37 " and

27lbs or so. Added Zantac and Prevacid along the way, and most

recently Miralax for constipation. Except for infancy prior to meds

for reflux, she has always been a great eater -- just can't get

enough calories into her to grow without Periactin. She currently

takes in more than 1,800 calories A DAY!!!!!

6. Peds Endo -- Dr. Madeleine Harbison in New York (yes, we fly

there every 3 months) -- Mitch Geffner at CHLA when we can't get to

NY; Geneticist: Rena Falk at Cedar Sinai (awesome); Peds GI --

Fred Watanabe at CHLA (incredible); Orthopedics - Skaggs,

Chief at CHLA;

7. Diagnosed at about 2 years of age by Genetics at Yale Children's

Hospital; confirmed at 3 years of age by Genetics at Cedar Sinai in

LA; and then again at 4 1/2 years of age by Dr. Harbison (whew, if

someone had changed their mind I would have gone crazy)

_____

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Hi Cindy,

Yes, Dr H currently recommends not more than 25% weight to height

ratio in general (although she is very happy with 10-15%). She did

not tell us that needed to be in that ratio for GH, just that

due to insulin issues, she doesn't want him going over that

percentage.

Judith, Steve, (RSS) and (non RSS) 4 year old twins

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