Re: Re: Roll Call - Joanne R

[Guest guest]

1.Joanne R

2.[12 yrs]non rss,Kyran[10 yrs]non rss,Christian [8 in april]Rss-123

cms and 50 lbs. and on[6 1/2 years]

3.sawbridgeworth,Hertfordshire,UK

4.Born 40 weeks 4lbs 13 oz and 14 inches long

5.Started Gh at 23 months old.Was off the centile chart now on 25th for both

weight and height.

6.Dx at 22 months old by Dr Stanhope at Great Ormond Street Hospital [london

UK]

Seen yearly by Dr Stanhope and yearly by local paed.

Re: Roll Call - S.

> 1. S.

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

> south of Los Angeles)

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> 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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