RSS possible for daughter:

[Guest guest]

Hi :-)

Everyone is giving good advice. The only thing I will add is that you take

your daughter and see a pediatric pulminologist. I do not have all the

information but, I was concerned that she was not blowing off the CO2. You

need to find out why not. Is she micro aspirating at night when she sleeps.

It is hard to figure out. You typically do not know until they get

pneumonia. What is her breathing pattern like? Does she engage her

innercostal muscles to help her breath? Are her shoulders high and is her

rib cage still up high like a newborn? Make sure that whoever you see

evaluates her breathing pattern in relation to her age. You can take into

account a little the hypotonia but you need to watch this. Make sure you

get copies of all her blood tests and reports from specialists. My

pediatrician used to copy them all for me at no charge. Bring all test

results and reports to all the doctors you see for her. The doctors do not

communicate like you would think they would so, you will need to be the one

who pushes for the communication.

You can e-mail me privately anytime.

J

>

> Reply-To: RSS-Support

> Date: Thu, 27 May 2004 06:27:01 -0700 (PDT)

> To: RSS-Support

> Subject: Re: RSS possible for daughter

>

> Megen

> i know how stress full it is to get a maybe i also at the same age got that.

> my son i 7 and he has rss. he had some of the same indicate that your child

> but every child is different with rss that si why plus not not allot if Dr,

> know allot about hopefully you will get it all straitened out. i will tell you

> you have found a great group of parents here and many of them have a lot of

> knowledge of rss.

> Cara(mom) 3 nonrss Ethan 2 nonrss

> mbdonnell mbdonnell@...> wrote:

> Hello everyone,

>

> I am new here and our 15 mo old may possibly have RSS. She has seen

> a geneticist who never mentioned RSS to me but did in the letter she

> sent to my pediatrician as a possibility (got the copy today). She

> also has seen an endocrinologist and her electrolytes were a bit off

> for CO2 and still waiting for one of the growth hormone results.

>

> She was IUGR (among many other worries brought to our attention by

> the level 2 ultrasound specialist - including possible dwarfism which

> appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches. She

> has hypotonia (low muscle tone), has trouble eating (but eats), a big

> forehead and small mouth, crowded teeth, and turned in 5th finger.

>

> I've been online for 2 hours and it seems that each case presents

> differently. I am going to talk to the pediatrician tomorrow but any

> suggestions? Did anyone else have similar symptoms presented?

>

> I apologize jumping in prematurely as this is still a maybe.

>

> I hope all your kids are doing well and would appreciate any advice.

>

> Thanks!

>

>

>

>