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Re: Dr. H visit on 6/24 - anyone else?

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Dalia's weight is doing great! I was so excited to see her at 18

pounds! Will you make sure to post a photo of her with her new baby

sibling when he or she comes? Jenn

> Hey everyone,

>

> We are getting closer to our trip to NY to see Dr. H. I am really

> excited to go...we are staying a few extra days to make it like a

> vacation...I will be 34 weeks pregnant when we go...hold on there

> baby!!

>

> Is anyone else going that Friday, 6/24? Does anyone have any

> suggestions or tips for our appointment with her?

>

> Thanks,

> Sheryl (Dalia, SGA, 18 months, 18 lbs 3 oz, 29.25 in, Prilosec,

> Periactin, Mirilax)

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Hello I am new to the group, My son was genetically diagnosed this week for RSS,

But I was wondering who this Dr. H is and what is the specialty,and should my

son go. Gray is 21 months 18lbs and 29 inches. Fundo. g-tube, zantac and mirlax,

tegretol

olifraz wrote:Hey everyone,

We are getting closer to our trip to NY to see Dr. H. I am really

excited to go...we are staying a few extra days to make it like a

vacation...I will be 34 weeks pregnant when we go...hold on there

baby!!

Is anyone else going that Friday, 6/24? Does anyone have any

suggestions or tips for our appointment with her?

Thanks,

Sheryl (Dalia, SGA, 18 months, 18 lbs 3 oz, 29.25 in, Prilosec,

Periactin, Mirilax)

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

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Hi Amber,

Welcome to our group!

Dr H is Dr. Madelaine Harbison, an Endocrinologist based at Mt. Sinai

Hospital in NY. She is considered, by many, to be the foremost expert on RSS

in the US. She is currently managing more than 100 RSS patients through her

practice.

My best suggestion would be attempting to get a visit with Dr H at the MAGIC

Foundation convention that will be held in Chicago in July. The MAGIC

Foundation deals with numerous growth disorders, and Dr Harbison sees

patients by appt there for free. You can find the MAGIC Foundation at

www.magicfoundation.org for details.

Hope this helps! And once again, welcome! You've found a GREAT bunch of

people that are supportive, informative, and caring!

Pat (g-ma to , RSS, 3 yrs 5 months old, 23#, 33 " , G-tube, GHT)

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Sheryl,

I am so interested to hear what Dr. H has to say since Dahlia and

Emerence are SO alike! Yay on the baby, you are getting so close!!

HOpe you are feeling okay.

, mom to 5 and Emerence 2 32.5 " 21lb

> Hey everyone,

>

> We are getting closer to our trip to NY to see Dr. H. I am really

> excited to go...we are staying a few extra days to make it like a

> vacation...I will be 34 weeks pregnant when we go...hold on there

> baby!!

>

> Is anyone else going that Friday, 6/24? Does anyone have any

> suggestions or tips for our appointment with her?

>

> Thanks,

> Sheryl (Dalia, SGA, 18 months, 18 lbs 3 oz, 29.25 in, Prilosec,

> Periactin, Mirilax)

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first off welcome to this great big group!! we are more of a family

here than anything!! my son is 4yrs rss 27lbs 6oz 39 " when you say

geneticly dx do you mean he had the upd7 test and it was positive, just

curious. my son was negative but that doensnt matter 10% of the kids

test positive. dr h is in nyc she is the us expert on rss. she also

goes to the magic foundations annual convention in july and sees kids

for free!! check out the magic foundations site

www.magicfoundation.org its great and the convention is just awesome!!

jodie c

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Thank you for the info - Grayson was positive upd7, which I was told was very

rare, we are going for genetic counciling on Monday . I was told also that RSS

is becoming one of the most overdiagnosed syndromes. b/c I ask about my son

having RSS,and he didn't think Grayson had it.

Jodie wrote:first off welcome to this great big group!!

we are more of a family

here than anything!! my son is 4yrs rss 27lbs 6oz 39 " when you say

geneticly dx do you mean he had the upd7 test and it was positive, just

curious. my son was negative but that doensnt matter 10% of the kids

test positive. dr h is in nyc she is the us expert on rss. she also

goes to the magic foundations annual convention in july and sees kids

for free!! check out the magic foundations site

www.magicfoundation.org its great and the convention is just awesome!!

jodie c

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

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