Re: Worried about the future

[Guest guest]

<<Hello everyone,probably a strange question but do any RSS kids grow up

without any major medical intervention.ie feeding tubes,special diets

etc.My Ped seems to think " everything is absolutly fine and Morven

will just need growth hormones when she is 5/6 and then everything

will be fine " .Does anyone know of any kids who have grown up without

any problems?>>

I think there are a few that do not have feeding tubes and such. My son is 5

years old. He does not have a feeding tube. He does not eat very much at all (a

typical day is a waffle, with NOTHING on it, a banana.. That's about it for

food) But he drinks Carnation instant breakfast, about 2 packets a day (I mix it

1 packet per 3 cups of 2% milk). It is that that has kept him from needing a

tube. He has other problems, but as far as the SGA/RSS goes he really is doing

very well. He has had some low sugar issues, but not lately...He is on growth

hormone...

R

Mom to Jed (12) Asthma, tics, CAPD

Liam (5) Asthma, Epilepsy, Hearing impaired,

SGA, Food Allergies.

Orlando Fl

[Guest guest]

,

Every single one of us worries about the future for our kids. It is

normal and very, very real. But there are a number of RSS kids who

have grown up without medical interventions, problems, etc. and are

now happy, successful and doing well. One example is Hillary who is

in law school now. Kim is happily living in Scotland, but I don't

know what she does. from Australia is about to start college

in a prominent media program. And there are many others.

I think that the people who are more active on this listserve and

post the most often are those of us who do face problems or are just

learning to deal with RSS and SGA. So you can relax about your

concerns for now. But please be aware that there are many issues

that have come up through the years as we have learned more and more

about RSS. The blood sugar issue is the latest. I don't mean that

Morven WILL have these problems, but if you are aware of them, you

will know to look out for them and treat her if she shows any

signs. Also, doctors who do not know much about RSS are more likely

to say that there is nothing to look out for or to do. YOU are

going to be the one to learn more and more and advocate for your

daughter. YOU are the one who may, unfortunately, have to educate

the medical professionals.

But I hope things go smoothly with Morven and you do not face any

issues. We all wish that for our kids.

Jodi Z

[Guest guest]

,

My son Jon is 11 and has had some medical issues but mostly related

to issues that were not caused by his RSS. He was never on a feeding

tube, has always had a good appetite, he is skinny but maintains good

growth with growth hormone, he doesn't have reflux(that I know of),

he's bright and does well in school and he does not have blood sugar

issues. So the answer is, yes, there are RSS kids that don't have

serious medical issues. As of yet Jon also has not had problems with

early puberty. We believe he is starting early puberty but he seems

to be going about it slowly and we are hoping that no intervention

will be necessary.

Now all that being said, it is reassuring that not all RSS kids have

all the medical issues but more importantly it is absolutely necessary

for us as parents to keep an eye out for things that could be wrong.

That is why this list serve is so wonderful! Don't read the posts and

think this is definately going to happen, just use it to educate

yourself to know what to look for and how to treat it. For instance,

blood sugar issues are first seen in the child's behavior. If you

notice that your child is very fussing and inconsolable that may point

to blood sugar issues. Many of the hidden RSS issues can be found by

a watchful parent. Then you have all this great info to help you

solve it.

I can guarantee you that whatever future you are planning in your

mind for Morven will not be anything like reality. There will be ups

and downs, progress and setbacks, joys and tears. None of us know

what the future holds and I can understand your need to see the good

possiblities as well as what you see on the listserve many times.

There are great emotional struggles with raising an RSS kid(healthy or

not) but all of the ones I have met have been amazing kids and teens!

Hope this helps!

Pattie

>

> Hello everyone,probably a strange question but do any RSS kids grow up

> without any major medical intervention.ie feeding tubes,special diets

> etc.My Ped seems to think " everything is absolutly fine and Morven

> will just need growth hormones when she is 5/6 and then everything

> will be fine " .Does anyone know of any kids who have grown up without

> any problems?

> Its just Im reading the posts and getting myself terrified about the

> future.I know everyone else is coping but it just all seems so

> scary.Especially as we dont seem to have the expertise her in UK.

> Thanks Mum to Morven 16mths Might have RSS.

>

[Guest guest]

Hi ,

Our is only 6 going on 7, so I don't know about " growing up "

(all the way), but he is doing just fine and has had very minimal

medical intervention (no tube, no GH, just lots of appts until we

figured out it was RSS). Those first two years of his life were

tough, because we didn't know why he wasn't growing well. And getting

him to eat was a draining, frustrating experience. But, now, although

somewhat picky, he eats pretty well. (Just last night he ate all his

dinner with the lure of getting to watch the first Harry Potter movie.)

He is in first grade, and isn't the littlest. He has had two years of

swimming lessons and made it to the top level at the YMCA for his age

group. He played t-ball two years ago -- no problem. He is doing

fine in school, and for all appearances, is a " regular " kid.

Yes, he is pretty scrawny (about 47 " and 42lbs), and yes,

saying " , time to finish up your dinner " for the 54th time is

annoying. But all in all we are doing OK. When I first came on this

listserve, Matt had just turned one year old. Everyone said it will

get better, and it sure enough did. This is a wonderful place for

information about the whole range of RSS issues.

Sandy, Mom to

>

> Hello everyone,probably a strange question but do any RSS kids grow

up

> without any major medical intervention.ie feeding tubes,special

diets

> etc.My Ped seems to think " everything is absolutly fine and Morven

> will just need growth hormones when she is 5/6 and then everything

> will be fine " .Does anyone know of any kids who have grown up without

> any problems?

> Its just Im reading the posts and getting myself terrified about the

> future.I know everyone else is coping but it just all seems so

> scary.Especially as we dont seem to have the expertise her in UK.

> Thanks Mum to Morven 16mths Might have RSS.

>

[Guest guest]

You feel free to ask away. We are all here for the very reason to

support you.

- H

>

> Thank you everyone for all your words of advice and support.I have

so

> many worries ,concerns etc but because I dont have a diagnosis for

> Morven yet it is all still a bit unreal.I have lots of questions I

> will be asking you all i daresay.

> Thanks again

>