Mommy needs to vent

[Guest guest]

I have just been to the genetics dr with my son brayden and they are as

sure as can be that he has RSS. So now trying to find an endo in my

area to deal with. I feel like I still dont know whats going on. I

have no clue whats coming next. Could someone please give me a little

insight on whats coming for my boy.

[Guest guest]

Where do you live? That would help us give you a recommendation for

an endocrinologist which Brayden will need to see. Also, have you

checked out www.magicfoundation.org? It's a great website and tells

you a lot about RSS. Most of us on this listserve are members of

MAGIC.

While it may seem overwhelming and scary for you now, RSS is one of

the " better " syndromes for your child to have if he has to have one.

The kids grow up to be happy, healthy adults. It's the childhood

stuff that can be difficult to deal with. Well....my son is now 17

and we're having some problems, but he is a more complicated case. He

is in regular high school, well-liked, has a job, is on the school

newspaper and just a great kid. You'll read a lot about him.

Now, please tell us more about Brayden so we can all help you better.

Jodi Z

[Guest guest]

Hi,

Let us help!! Where are you from? We are all over from AZ to Mexico

to New Zealand to Fl to MA and can help you with recommendations (OK

DEB Canada too!!! ). Join MAGIC - it will be the best $30 you ever

spent. They also have Dr lists.! When you join, order the 6 dvds of

the past 2 year conferences on RSS and treatment. It will be a lot to

go through but pick the basics first and the rest can wait until

later. You can also order free articles regarding RSS and treatment.

Things to watch for - silent (or not) reflux, gastro issues, some kids

have hypoglycemia (low blood sugar) - there is a great article about

putting cornstarch in the nighttime bottle to keep blood sugars up,

low muscle tone, feeding issues. My daughter is very mild/ definitely

sGA (small for gestational age) but got PT (physical therapy) and OT

(occupation therapy) for quite a while. All states have free

programs. Also October is WALK FOR MAGIC month - there might be a

wall near you and you can meet a bunch of people at once...

Take care, I have met a bunch of RSS adults and they are all pretty

happy and leading normal lives (Sharon if you are lurking - where are

you - we need your sense of humor!!!!).

, mom to 5 and Emerence 2.5 22lb 32 "

> I have just been to the genetics dr with my son brayden and they are

as

> sure as can be that he has RSS. So now trying to find an endo in my

> area to deal with. I feel like I still dont know whats going on. I

> have no clue whats coming next. Could someone please give me a

little

> insight on whats coming for my boy.