Re: Debby B

[Guest guest]

Hi Debby!

I hope you found usefull information about your

condition. I take that you had a healthy childhood,

because then you would have been diagnosed sooner with

RSS. Please share some information with us, maybe you

could share some tips with us!

Elize mom to Visser 12 RSS

--- " Debby B. " wrote:

> LOL Elize

> I agree with Jodi, we are " beautiful neurotic moms "

> I don't know if you were on the group several years

> ago when I had to take

> Adam to emergency because he had put silly putty on

> his penis and couldn't

> get it off, so the " super " mom that I

> am.........rubbed it off with rubbing

> alcohol (BAD MISTAKE); only to have my son refuse to

> pee for over 24 hours

> because it burned. I was frantic, and took him to

> emerge and every nurse and

> doctor that came in the room kept saying " he has

> what? Silver

> Syndrome? What's that? " And I would say " it's a

> growth disorder, but look my

> kid is in pain what can you do? " and they would say

> " tell me about this

> Silver Syndrome " and I was like " FORGET THE

> RSS! My kid can't

> pee!!!!!!!! "

> Oh everyone had a good laugh when I told that story,

> but I have had my fair

> share of problems with the medical community.

>

> So from now on I am going to use " beautiful neurotic

> mom " as my mantra (I

> should even get a t-shirt!)

>

> Debby

>

>

> Re: doctor binders:CHAT

>

>

> > Debby, I was smiling when a read your message,

> because

> > I had the same experiences, one do tend to get

> tired

> > to explain your childs condition and all the

> medical

> > related conditions. I also compiled such a list

> mainly

> > for when my child was admitted in hospital. Every

> > single person who entered the room had to ask the

> same

> > qeustions, so i thought, supply them with all the

> > information and they can read it themselves. One

> tend

> > to forget all the medical detail over the years. I

> > think that we are beutifull neurotic mom's.

> >

> > Mother of Visser South-Africa

> >

> > --- Deb wrote:

> >

> >> Ah this reminds me of a funny story. When Adam

> was

> >> 2-3 years old and I was

> >> taking him to specialist after specialist after

> >> specialist to figure out

> >> " what was wrong " I had compiled a typed sheet

> >> listing all his milestones (I

> >> was tired of answering " how old was he when he

> held

> >> his head up, how old was

> >> he when he spoke his first word etc).

> >>

> >> I figured it was a good thing to save these

> doctors

> >> a lot of time by

> >> providing them with this information.

> >> I gave this list to the psychologist who first

> did

> >> an assessment on Adam.

> >> She ended up deciding I was NEUROTIC because I

> had

> >> all this information

> >> ready to give her! She even put it in her report

> >> that many of Adam's

> >> problems stem from my being NEUROTIC!! And when

> >> questioned, she based that

> >> assumption solely on my providing that list to

> her!

> >>

> >> UGH some days you can never win!!!

> >>

> >> Debby

> >>

> >>

> >>

> >

> >

> >

> >

> >

> >

> >

> ____________________________________________________

> > Start your day with Yahoo! - make it your home

> page

> > http://www.yahoo.com/r/hs

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Debby

will be visiting a Peadiatric Endo tomorrow.

What information should I take with, or will he need

for the physical? I hope our medical aid wil give

permission for the GH. I will not have a problem with

administering the GH, because I'm fortunate to be a

Regestred Nurse, and had to give a lot if IV

medication and injections before. She is also

comfortable with the idea of having shots, just as

long as she can grow a bit. She is very sensitive at

this stage about her hight and posture, craving for

friends her own age. They don't want to play with her

because is is difficult for her to keep the pace they

have.

--- " Debby B. " wrote:

> HI Elize

> My son was 8 years old when we started GH. A lot of

> reasons delayed our

> starting. At the time, I was very worried about him

> having needles every

> night, and ME having to give them to him (I wanted

> to be a doctor, but the

> thought of doing needles, kept me from it! imagine

> my surprise to have a

> child that needs nightly needles).

> I was also tremendously concerned that we would go

> through this for years

> and in the end find out that it only gave him an

> extra centimeter in height.

> No one can " guarantee " how much the child will grow.

>

> It was a very difficult decision. But what finally

> pushed me to try it was

> when the endo said " we can tell in 6 months, by his

> curve on the growth

> chart, if it's working or not " . So I thought " OK if

> it's not working in 6

> months we'll stop; that's better than 10 years of

> it! "

>

> Ends up, after 3 months, Adam's growth curve spiked.

> He is finally, just

> this past year, at the 3rd percentile (he was never

> close before). Before

> we started GH, based on the curve of his growth

> chart, the doctor guaranteed

> me, without GH, he would never get past 4 foot 7 or

> 4 foot 8.

> At his last check up, my endo told me that now, with

> the GH, he can

> guarantee me that Adam will be at least 5 feet if

> not more. My son, right

> now, is 4 foot 7. There is no way he could drive a

> car or function

> " normally " as an adult at that height.I am so

> grateful that I have had the

> opportunity to do it.

>

> It's a difficult decision. If you have any other

> questions Elize, feel free

> to ask!

>

> Debby

>

>

>

>

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