Debby B questions

[Guest guest]

Hi Debby,

Just thought I would answer a few of those questions ... Oh and by

the way it should snow any day now ... lol.

The Trillium Foundation is an Ontario gov't drug program for

prescription drugs for people with no insurance or whose insurance

doesn't cover, you have to apply and get accepted and the doctor has

to fill out a secion 8 to be approved. You have to pay a deductable

that works out to about 4% of your wage. The website is

http://www.ontarioaidsnetwork.on.ca/trillium.htm

It was definitely the North York General Hospital that the blood was

sent to. The genetisists that come up here once or twice a year to

do clinics are from there too. I had just found out after becoming a

Magic member that there was only 10% for chromosome 7 and I was a

little shocked.

The hospital in London is the Children's Hospital of Western Ontario.

It's funny you know with all the characteristics of our children and

how they inherit different things and the other kids having some of

the RSS characteristics that Noah doesn't have ... like two of my

children have cafe au lait spots but Noah doesn't ... anyway I knew

something was up with the mouth too as my husband, myself and the

three older kids all have quite the front space in our teeth and they

all did with their baby teeth too ... then there was little Noah with

these nice little teeth and no space at all. His would probably be

more crowded if it weren't for the fact that we all had too much

space. Funny.

TTYL

Dawna

> >> Hi Dawna

> >> You will find on this group that we have people from all over the

> > world,

> >> Canada, Australia, England, geez some we haven't heard from in

> > awhile were

> >> Russian and I think we have a couple in Japan now. But mostly the

> > people are

> >> in the US.

> >>

> >> However you have lucked out tonight and found me!! I'm in

Toronto!!

> > Yes we

> >> are in the same province.

> >>

> >> My son, Adam will be 13 years old next week but he was just over

2

> > when

> >> people started to say something was wrong with him and around 3

> > when I first

> >> heard RSS but we didn't get a " for sure " for several years. I

also

> > seem to

> >> be the only parent of an RSS child on this list from Canada who

has

> > their

> >> child on growth hormone (OHIP will not pay for it, but I am a

> > teacher and I

> >> have it paid for through my work drug plan).

> >> There's one girl out in Alberta who is off to Edmonton next week

to

> > see if

> >> her endo will say OK to growth hormone (alot of our Canadian RSS

> > families

> >> are out west but their doctors all seem to not even want to

> > prescribe it).

> >>

> >> Now I am in the process of helping this girl in Calgary go

through

> > the

> >> motions and the fighting to get GH paid for (once her doc

> > prescribes it). So

> >> no need for you to worry about that, I have some contacts with

drug

> >> companies up here too that will provide the GH for free if you

can

> > not get

> >> it covered. So rest your mind on that one, I will help you.

> >>

> >> Where will you be going to see the endo? Are you coming down to

> > Sick Kids?

> >> Any chance it is Dr. Daneman you would be seeing (if you come

down

> > here)?

> >> You'll have to let me know, that's our endo. I can help you

figure

> > out how

> >> to get around that hospital etc as well.

> >>

> >> Now for a comprehensive understanding of RSS you made the great

> > first step

> >> of finding this group. Did you see Magic foundation in your web

> > search? It

> >> is a foundation for all sorts of growth disorders and RSS is

> > included. Each

> >> July there is a convention in Chicago. I have driven down twice

now

> > over the

> >> years and it has been the best thing for Adam to meet other

> > kids " like him " .

> >> That means when he met 8 year olds (this was when he was 8) they

> > were HIS

> >> size (instead of way taller) and he meet 6 year olds who were

> > SMALLER than

> >> him (instead of usually being BIGGER than him). The world went

into

> >> proportion for him, the way it should.

> >> We also got a chance to see a Doctor (we call her Dr. H) who is

> > based in New

> >> York. Now, as you know, OHIP will not pay for us to see these

> > doctors, but

> >> this doctor is so fabulous she volunteers her time free of charge

> > to provide

> >> some insights and consults during the convention. She was the one

> > who said

> >> Adam definitely had RSS. The doctors up here had decided since it

> > wasn't

> >> anything else, that must be what it is.....but I wasn't 100% sure

> > until Dr.

> >> H. saw Adam and told me what she thought.

> >> The convention also has a variety of speakers and topics of

> > educational

> >> content for us parents and great activities for the kids.

> >>

> >> first thing you should do is go to www.magicfoundation.org and

> > check it out.

> >> It's 35.00 Canadian for us to join (I think, I am pretty sure

it's

> > 30.00 for

> >> the US people and we are 35.00) but this gives you the

membership,

> > access to

> >> an incredible library of research articles, access to the

> > convention at

> >> discounted prices, a quarterly newsletter and wonderful

information

> > in

> >> general.

> >>

> >> I don't want to overwhelm you right away, I just get so excited

to

> > find

> >> fellow Canadians.

> >>

> >> Please feel free to email me through this group or privately if

you

> > have any

> >> questions and let me know if you are coming to Sick Kids for your

> > appt.

> >>

> >> Take care

> >>

> >> Debby

> >>

> >> Another Newbee

> >>

> >>

> >> > Hello All,

> >> >

> >> > My name is Dawna, my husband and I have four children and Noah

our

> >> > youngest has just been diagnosed as RSS. We live in Thunder

Bay,

> >> > Ontario, Canada and I am interested in communicating with

others

> > with

> >> > boys the same age as Noah who is 3 by the way, others about

growth

> >> > hormones and insurance etc in Ontario (if there are any out

> > there) and

> >> > just anyone in general. As it has only been a month since we

> > found out

> >> > for sure (as sure as it gets I guess) that Noah is RSS, we are

> > just

> >> > starting the process of gathering information etc. We are

> > nervous and

> >> > stressed, but the more we talk with people the better it gets.

> > We have

> >> > an appointment with an endocrinologist in Southern Ontario in a

> > couple

> >> > of weeks.

> >> > Thanks ... looking forward to chatting and emailling!

> >> >

> >> > Dawna

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >