Re: Hello everyone -

[Guest guest]

Hi !

My g-son, , was born at 39 weeks gestation, weighing 3# 5 oz, and

measuring 15 " in length. He spent 3.5 weeks in the NICU, and came home

weighing 3# 11oz. He is now 3 yrs 5 months of age, weighs 23# and measures

33 " tall. He's 100% g-tube fed, and has been on GHT since last July.

is also one of those kids with numerous specialists. He has, or has

had, a geneticist, a cardiologist, a pulmonologist, a gastroenterologist, an

endocrinologist, an allergist/immunologist, and a urologist. He has received

OT, PT, and ST, off and on for most of his life.

is also asthmatic. He was officially diagnosed with RAD (Reactive

Airway Disease), Asthma, and severe scarring of the lungs from a bout with

RSV when he was almost one year of age. He has a Flovent inhaler with a

spacer, that he does twice a day. We use Xopenex with a nebulizer as needed,

but he's hasn't been totally off the Xopenex for over a year now. When his

breathing is bad, he gets nebulizer treatments every 4 hours, then we wean

him down to 4 times a day, and then down to twice a day.

As you can see, you are far from alone!! Lots of our kids need some form of

specialized care.

As Ken said, the only test I can think of, that would be suggested for a

determination of RSS would be UPD#7. BUT it's only positive for

approximately 10% of our kids, and can be present with other syndromes, so I

wouldn't worry too much about not being able to afford it. For most of our

kids, it's a clinical diagnosis, which means ruling out everything else,

leaving RSS as the most likely possibility.

My best suggestion would be attending the MAGIC convention this July in

Chicago. There are scholarships available, and if you've been reading the

list serve, you can see that many people individually fund-raise to be able

to attend. Dr M. Harbison, a prominent Endocrinologist from NY, does free

consultations during the convention, and would be able to give you her

opinions and advice. She currently has over 100 RSS kids as part of her

private practice, so she is very familiar with the syndrome. Numerous

families, from the list serve, travel from all over the country to see her

on a regular basis.

Hope this helps, and welcome to the list serve!!

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