RE: New Member

Report post · October 24, 2000

Debby wrote:

>>>I seem to be budding in on another conversation...who is ? Is it

>>>the Archie's ??<<<

Debby,

is 's " girlfriend " at school. :-)

Debby wrote:

>>>If it is, will be disappointed because Adam has already spoken for

>>>her!!!<<

too funny!

Sue R.

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Report post · October 24, 2000

and others

I had to ask about . It seems Adam's imagination has taken front and

centre stage. He is into, not including the ever popular Digimon/Pokemon, the

Archie's cartoons.

One day his books from school came home and he had rubbed out his name on every

one and put either Betty or . The teacher scratched this out and re

wrote " Adam " and didn't the little fart cross that out !! and re write Betty

or .

He wants to send them mail, he named our fish Betty and ...and oh then

there is his invisible friend who seems to always be around--Mimi (another tv

character)!!

I am about to go nuts with this!!! Anyone else find their kids with this

" behaviour " or do I have a true and certifiable " wacko " on my hands????????

Any help will be much appreciated

Debby (at least I think that's still my name....I could be Jughead now for all

I know!!!!!!!)

Report post · November 27, 2000

Hi Cheryl my name is Carolyn. My son Noah is almost 10 months & was diagnosed

with RSS last month. It has definalty been a hard thing to except but I never

of could of gotten this far without everyone from here. I am not from Canada

I am from Long Island, New York but if you ever need to chat feel free to

e-mail me. Thanks Carolyn (My3Sons-Noah w/RSS)

Report post · November 27, 2000

Hi Cheryl

I was the only resident Canadian here for the longest time, but now we have a

few more. You

don't say what city or province. I'm in Toronto and Kristi is out in BC. We seem

to be the

two regular contributors.

Welcome to the group. I've been here since August and have learned so much. My

son, Adam, is

8 but was diagnosed around 2. But it's taken me this long to accept the

diagnosis and then

find some help with it. One prior endo. at Sick Kids told me not to come back he

could do

nothing.

Right now I am waiting (rather impatiently) to get approval for Growth Hormone

(GH).

Please write back and let me know where you are. Kristi or I might be able to

help with

doctors etc. I sure have visited the lot at this end of Canada.

Take care and hope to hear from you soon. Then we can get into some specific

" Canadian "

details.

Debby

(mother of Adam, 8, 35.5 lbs, 109.2 cm. and Colette, age 11 5 feet tall and 115

lbs--BIG!!)

kevinandcheryl.vanderheyden@... wrote:

> Hi, my name is Cheryl and I have a son named who will be 3 on

> Dec. 1. He has not been diagnosed with RSS, but after discovering

> this group and the Magic site, I know in my heart. We just had a bone

> age done, and are waiting on results. I just wanted to introduce

> myself, and let you know that I am getting to know a little about

> many of you from the messages here. I would like to hear from anyone

> in Canada to find out who the " good " endos are, and anything else I

> might need to know that is different in Canada than in the US. Thanks.

>

Report post · November 30, 2000

Hi Debby,

I think I am figuring out how to use this message board thing!

Anyway, we live near Sault Ste Marie in Ontario. I am starting to

think I may have over reacted to right away think that my son may have

RSS. He has lots of the characteristics, but there are lots he

doesn't have too. He was 8lbs at birth and grew well for the first

few months. Aside from not growing and not wanting to eat, he is too

healthy. How do they actually diagnose RSS, since the cause isn't

understood and symptoms vary so much? What is involved in getting

approved for GHt? Our pediatrician mentioned getting Gh pretty

casually 1.5 years ago and sent us to Sick kids, but our appointment

gat cancelled and I never got around to going back. I guess I didn't

realize we might be dealing with something serious. Oh well, there's

still lots of time.

Cheryl

>

> > Hi, my name is Cheryl and I have a son named who will be 3

on

> > Dec. 1. He has not been diagnosed with RSS, but after discovering

> > this group and the Magic site, I know in my heart. We just had a

bone

> > age done, and are waiting on results. I just wanted to introduce

> > myself, and let you know that I am getting to know a little about

> > many of you from the messages here. I would like to hear from

anyone

> > in Canada to find out who the " good " endos are, and anything else

I

> > might need to know that is different in Canada than in the US.

Thanks.

> >

Report post · December 4, 2000

Hi Debby,

Sorry it takes forever to get around to answering sometimes. We went to

Pancake Bay for the

first time this summer and had fun on the beautiful beach except that it was

cold. We are

actually from Milton, and moved here 3.5 years ago. We make numerous trips to

the Toronto area

every year...including Christmas this year. That's how I got started re-opening

this can of

worms...In the spring of '99 we had an immediate referal to sick kids only 5 or

6 weeks after

the appointment was made. I don't know who we were going to see. It was a

weight gain clinic

and there would be a panel of doctors and dieticians etc. who would determine if

further tests

were necessary, and GH had been mentioned by our doctor. They really

inconvenienced us by

cancelling on short notice so I said " don't bother rescheduling " . I thought it

would easy to

get in again when we were planning a trip " home " . I guess it isn't that easy,

and now our ped.

has sent a photo of to somebody in London(an endo?). I will find out who

on Wed at our

appt. And just for the record, there aren't any doctors in the SOO with

credentials!!!

Cheryl

Debra Baillargeon wrote:

> Hi Cheryl

> Sault Ste Marie is a nice town. On my honeymoon, my husband (now ex) and I

camped at Pancake

> Bay. We ended up in " the Soo " one day when it rained. We kicked around in a

mall.

>

> Anyway, my son was 5-3 when he was born. I smoked when I was pregnant but had

also smoked

> with my daughter and she was 7-11. But with Adam I had some bleeding at 32

weeks of

> pregnancy and was hospitalized for a week. During that week the ultrasound

showed Adam to be

> 5 lbs and 6 weeks later when he was born, he hadn't grown much since that

time.

> The doctors figured it was a combination of the smoking and a possible tear or

something in

> the placenta that restricted food getting to him.

> The doctors felt he was initially growing and " catching up " fine until around

9 months when

> his weight gain seemed to plateau. By a year he was a skeleton. So began the

rounds to see

> why he wasn't growing.

> I tell you this because, in the end, he was given the RSS diagnosis. No one

can prove for

> sure the kids have it. It's basically one of elimination of any other problems

coupled with

> some visual characteristics.

> What doctor were you supposed to see at Sick Kids. Dr. Ehrlick by any chance??

He was the

> one who told me Adam had RSS but he couldn't do anything for us and I wasn't

to come back.

> (that was in and around 1996 or 1997). He has since retired and the head of

endo. now is Dr.

> Daneman, who has examined Adam, has agreed with the RSS diagnosis and is

starting the

> process to get GH.

>

> Unfortunately this process is proving to be very slow. I am teacher and have a

good

> insurance/health care plan with the school. He has been " applying " for

approval from my

> insurance for--oh 2 months or so now (but then again I don't know for

sure--maybe he hasn't

> even started the paperwork yet all I know is when I call, his assistant says

they are

> working on it and won't say anything else).

> Dr. Daneman did assure me that if my insurance will not cover the growth

hormone treatments

> he can still get it, from the drug company, without my paying. He says that

the company

> needs the " stats " of GH working for RSS kids so they can widen their base of

approved

> treatment options through OHIP.

>

> I know it's not easy to get down to Toronto from where you are. And with the

winter coming

> it's even more difficult to think of. But if you decide you would like to try

again and see

> what the doc's at sick kids have to say...just let me know.

> You know from experience that even if you were to get a referral tomorrow, it

would take 4-6

> months for you to get an appointment anyway. So you'd be looking at the spring

anyhow

> (better driving weather).

> If you want, keep it in mind that I am out here and I can always help out

(recommend hotels,

> how to drive down there, a free meal at my place etc.) I live in Scarborough

(which is a

> suburb of downtown Toronto--it takes me about 1/2 hour to drive to sick kids)

but my house

> is only 5 minutes off the 401 (which is the eventual highway you would end up

on to get into

> Toronto anyway).

>

> Give it some thought. I am a firm believer (after many mistakes!!) of getting

second

> opinions. That way, either you get things confirmed or you have someone else's

opinion on

> options.

>

> Please write back and let me know how things are and I'm interested in which

doctor you were

> supposed to see at Sick Kids.

>

> Ps I would strongly recommend Dr. Daneman (over Dr. Ehrlick) as he was very

straight forward

> and honest with us. He seemed to know what he was talking about and had a good

" bed side

> manner " . I also have a endo. pediatric specialist that sees Adam for the

" regular " things.

> She's excellent too and is involved in on going research through sick kids but

has her own

> " regular " practice. But you wouldn't want to get into having to drive down

here every time

> you needed to see the doctor. Although, if you'd like, I could call her and

ask her if she

> could recommend a good doctor comparable to her credentials up in the " soo " .

She also has a

> daughter with a growth disorder, so she is wonderful and caring.

>

> Let me know.

>

> Thanks

> Debby

>

> kevinandcheryl.vanderheyden@... wrote:

>

> > Hi Debby,

> >

> > I think I am figuring out how to use this message board thing!

> > Anyway, we live near Sault Ste Marie in Ontario. I am starting to

> > think I may have over reacted to right away think that my son may have

> > RSS. He has lots of the characteristics, but there are lots he

> > doesn't have too. He was 8lbs at birth and grew well for the first

> > few months. Aside from not growing and not wanting to eat, he is too

> > healthy. How do they actually diagnose RSS, since the cause isn't

> > understood and symptoms vary so much? What is involved in getting

> > approved for GHt? Our pediatrician mentioned getting Gh pretty

> > casually 1.5 years ago and sent us to Sick kids, but our appointment

> > gat cancelled and I never got around to going back. I guess I didn't

> > realize we might be dealing with something serious. Oh well, there's

> > still lots of time.

> >

> > Cheryl

> >

> > >

> > > > Hi, my name is Cheryl and I have a son named who will be 3

> > on

> > > > Dec. 1. He has not been diagnosed with RSS, but after discovering

> > > > this group and the Magic site, I know in my heart. We just had a

> > bone

> > > > age done, and are waiting on results. I just wanted to introduce

> > > > myself, and let you know that I am getting to know a little about

> > > > many of you from the messages here. I would like to hear from

> > anyone

> > > > in Canada to find out who the " good " endos are, and anything else

> > I

> > > > might need to know that is different in Canada than in the US.

> > Thanks.

> > > >

> >

>

Report post · December 4, 2000

,

The only other test has had so far is for Celiac disease, which is a

malabsorption disease caused by wheat gluten. Our doctor originally said he

looked like a celiac kid (really fat round tummy and super skinny limbs), and

then I told him that my mother-in-law has it. We were stumped that it came back

negative (no antibodies against gluten), however the test was done when we were

first trying to get him to eat and he may not have been exposed to wheat yet at

that time. They just retested him, and it takes a couple of weeks to hear back.

I was thinking of avoiding milk for a while to see if that made any difference,

but I haven't yet since milk is his main diet. Anyway, thanks for giving more

possibilities to consider and discuss with 's doctor.

Cheryl

JBSalem@... wrote:

> Cheryl -

>

> These may be repetitive questions (I haven't done email for a couple days),

but has your son been checked for allergies, for malabsorption, for shoot, I

can't remember the name but chronic inflammation of the bowels, etc. In our

rounds of GI and Endos, I have met several children similar to your son - unlike

most RSS kids who are born small and still don't grow, these children were born

normal or above-average, and then around 3-4 months, their weight plummets, and

then several months after that, their height slows (height slows after weight

stops naturally). From my memory, one child ended up being allergic to all milk

protein ( meaning any dairy casings - its a tough one because so many foods have

milk casings in them). Another child went through a lot of studies before

finding out that she had the one I can't remember - it's a chronic inflamation

and she now takes medicine every day (and will take forever). The third child

has some type of malabsorption.

>

> Anyways. Just wondering if you have already had all these tests?

>

> Salem

>

Report post · December 5, 2000

Hi Cheryl

I know what you mean about sick kids and their cancellations!! I had an

appointment for Adam to

have a sleep study last December. That day I went crazy, organized his overnight

bag, mine, and my

daughter's. Arranged for my daughter to stay at my parents and get to school the

next day. Which

meant making next day's lunch in advance. Then, I had to organize my plans for

the supply teacher

because I knew the " morning after " would be wicked and I wouldn't be able to go

into work.

All that said, I dropped off Colette at my mom's (with dinner for her) then Adam

and I came home.

We didn't have to be at the hospital until close to bed time, so we had dinner

(bought--so I had

time for everything) and settled in for the wait. Suddenly, I get a call--the

tech. was sick and

they had to cancel us!! Literally within an hour of our leaving home. They were

dam lucky I hadn't

decided to go out for dinner and then straight down town or they'd have had one

mean, angry mother

on their hands!!

Well talk about throwing everything in reverse fast. Called the daughter back

home, got Adam down

off the ceiling (he'd packed every stuff animal he owns 8 times over) and

unpacked all the bags,

canceled the supply who was to take my class the next day etc. I was major

MAJOR peeved that

night!!!

But we were re scheduled for January 4th 2000. I had to laugh-- Adam is famous

down there now

because he was the first kid to " test " their computer Y2K business--the first

patient of the new

year (in the sleep lab anyway).

Well, I'm trying to think where McMaster's University is. I think that's

London--which is probably

where you are planning to go. I hear they are 2nd best in the areas of treating

children. It's so

frustrating when we go to these arrangements and then get canceled. Especially

for you doing all

that distance driving.

However, at least when you do come down here, you get to stay with relatives.

And so you know the

area better.

If you don't like what you hear in London (I really think it is McMaster's

you'll go to) be sure to

keep in mind a second opinion at Sick Kids. Their bed side manner in regards to

treating us parents

is not the best, but they do seem to know what they are doing for kids (with the

exception of that

ward where two kids have died--was it ward 5?? Did you hear about that up

there??) Actually in the

first case, the coroner has decided to rule it homicide (as in murder) since the

nurses were so

negligent. But the second one is still being investigated. Scary eh??

Oh well, that's enough. Keep in touch and keep the brain going on those biology

lessons LOL

Debby

PS How's the snow?? We were belted last night with news reports of the 1-2 cm.

we were expected to

get today. Oh leave for work real early etc. etc.they were cautioning us!! And

it was probably

about a 1/2 a cm when I got up--man we are wimps here in T.O. when it comes to

snow!!!!!

and Cheryl Vanderheyden wrote:

> Hi Debby,

>

> Sorry it takes forever to get around to answering sometimes. We went to

Pancake Bay for the

> first time this summer and had fun on the beautiful beach except that it was

cold. We are

> actually from Milton, and moved here 3.5 years ago. We make numerous trips to

the Toronto area

> every year...including Christmas this year. That's how I got started

re-opening this can of

> worms...In the spring of '99 we had an immediate referal to sick kids only 5

or 6 weeks after

> the appointment was made. I don't know who we were going to see. It was a

weight gain clinic

> and there would be a panel of doctors and dieticians etc. who would determine

if further tests

> were necessary, and GH had been mentioned by our doctor. They really

inconvenienced us by

> cancelling on short notice so I said " don't bother rescheduling " . I thought

it would easy to

> get in again when we were planning a trip " home " . I guess it isn't that easy,

and now our ped.

> has sent a photo of to somebody in London(an endo?). I will find out

who on Wed at our

> appt. And just for the record, there aren't any doctors in the SOO with

credentials!!!

>

> Cheryl

>

> Debra Baillargeon wrote:

>

> > Hi Cheryl

> > Sault Ste Marie is a nice town. On my honeymoon, my husband (now ex) and I

camped at Pancake

> > Bay. We ended up in " the Soo " one day when it rained. We kicked around in a

mall.

> >

> > Anyway, my son was 5-3 when he was born. I smoked when I was pregnant but

had also smoked

> > with my daughter and she was 7-11. But with Adam I had some bleeding at 32

weeks of

> > pregnancy and was hospitalized for a week. During that week the ultrasound

showed Adam to be

> > 5 lbs and 6 weeks later when he was born, he hadn't grown much since that

time.

> > The doctors figured it was a combination of the smoking and a possible tear

or something in

> > the placenta that restricted food getting to him.

> > The doctors felt he was initially growing and " catching up " fine until

around 9 months when

> > his weight gain seemed to plateau. By a year he was a skeleton. So began the

rounds to see

> > why he wasn't growing.

> > I tell you this because, in the end, he was given the RSS diagnosis. No one

can prove for

> > sure the kids have it. It's basically one of elimination of any other

problems coupled with

> > some visual characteristics.

> > What doctor were you supposed to see at Sick Kids. Dr. Ehrlick by any

chance?? He was the

> > one who told me Adam had RSS but he couldn't do anything for us and I wasn't

to come back.

> > (that was in and around 1996 or 1997). He has since retired and the head of

endo. now is Dr.

> > Daneman, who has examined Adam, has agreed with the RSS diagnosis and is

starting the

> > process to get GH.

> >

> > Unfortunately this process is proving to be very slow. I am teacher and have

a good

> > insurance/health care plan with the school. He has been " applying " for

approval from my

> > insurance for--oh 2 months or so now (but then again I don't know for

sure--maybe he hasn't

> > even started the paperwork yet all I know is when I call, his assistant says

they are

> > working on it and won't say anything else).

> > Dr. Daneman did assure me that if my insurance will not cover the growth

hormone treatments

> > he can still get it, from the drug company, without my paying. He says that

the company

> > needs the " stats " of GH working for RSS kids so they can widen their base of

approved

> > treatment options through OHIP.

> >

> > I know it's not easy to get down to Toronto from where you are. And with the

winter coming

> > it's even more difficult to think of. But if you decide you would like to

try again and see

> > what the doc's at sick kids have to say...just let me know.

> > You know from experience that even if you were to get a referral tomorrow,

it would take 4-6

> > months for you to get an appointment anyway. So you'd be looking at the

spring anyhow

> > (better driving weather).

> > If you want, keep it in mind that I am out here and I can always help out

(recommend hotels,

> > how to drive down there, a free meal at my place etc.) I live in Scarborough

(which is a

> > suburb of downtown Toronto--it takes me about 1/2 hour to drive to sick

kids) but my house

> > is only 5 minutes off the 401 (which is the eventual highway you would end

up on to get into

> > Toronto anyway).

> >

> > Give it some thought. I am a firm believer (after many mistakes!!) of

getting second

> > opinions. That way, either you get things confirmed or you have someone

else's opinion on

> > options.

> >

> > Please write back and let me know how things are and I'm interested in which

doctor you were

> > supposed to see at Sick Kids.

> >

> > Ps I would strongly recommend Dr. Daneman (over Dr. Ehrlick) as he was very

straight forward

> > and honest with us. He seemed to know what he was talking about and had a

good " bed side

> > manner " . I also have a endo. pediatric specialist that sees Adam for the

" regular " things.

> > She's excellent too and is involved in on going research through sick kids

but has her own

> > " regular " practice. But you wouldn't want to get into having to drive down

here every time

> > you needed to see the doctor. Although, if you'd like, I could call her and

ask her if she

> > could recommend a good doctor comparable to her credentials up in the " soo " .

She also has a

> > daughter with a growth disorder, so she is wonderful and caring.

> >

> > Let me know.

> >

> > Thanks

> > Debby

> >

> > kevinandcheryl.vanderheyden@... wrote:

> >

> > > Hi Debby,

> > >

> > > I think I am figuring out how to use this message board thing!

> > > Anyway, we live near Sault Ste Marie in Ontario. I am starting to

> > > think I may have over reacted to right away think that my son may have

> > > RSS. He has lots of the characteristics, but there are lots he

> > > doesn't have too. He was 8lbs at birth and grew well for the first

> > > few months. Aside from not growing and not wanting to eat, he is too

> > > healthy. How do they actually diagnose RSS, since the cause isn't

> > > understood and symptoms vary so much? What is involved in getting

> > > approved for GHt? Our pediatrician mentioned getting Gh pretty

> > > casually 1.5 years ago and sent us to Sick kids, but our appointment

> > > gat cancelled and I never got around to going back. I guess I didn't

> > > realize we might be dealing with something serious. Oh well, there's

> > > still lots of time.

> > >

> > > Cheryl

> > >

> > > >

> > > > > Hi, my name is Cheryl and I have a son named who will be 3

> > > on

> > > > > Dec. 1. He has not been diagnosed with RSS, but after discovering

> > > > > this group and the Magic site, I know in my heart. We just had a

> > > bone

> > > > > age done, and are waiting on results. I just wanted to introduce

> > > > > myself, and let you know that I am getting to know a little about

> > > > > many of you from the messages here. I would like to hear from

> > > anyone

> > > > > in Canada to find out who the " good " endos are, and anything else

> > > I

> > > > > might need to know that is different in Canada than in the US.

> > > Thanks.

> > > > >

> > >

> >

>

Report post · December 5, 2000

Cheryl

Can you help me out quickly here? I've got your emails saved (under Canadian--we

need a special place LOL) but I was telling a friend of mine today about your

son. In fact, 's email (see the bottom of these ones) I printed for him

today. His son is 7 now and is on the bottom of the charts for weight (40 lbs)

and his height was around the 10th percentile. Now he's not RSS, but given my

fascination (and updating knowledge on growth disorders) I've been " gently

bugging " him to get a second opinion. His son was 8 or 9 pounds at birth

(typical father can't remember exactly). So I sent him home last week with a

measuring tape to get his son's height (coincidentally his son's name is Adam as

is mine).

So I want him to look into some other things more along the line of what

was talking about.

So could you tell me again how old your son is and his weight/height now?? I'm

trying to piece this together for him. His wife is in total denial--but he works

at my school and he's seen Adam and he knows these things DO happen. You can't

live your life with your head in the sand. It does not benefit the child at all.

But then again I'm on a crusade to save all the small children of the world!!!!!

Debby

and Cheryl Vanderheyden wrote:

> ,

>

> The only other test has had so far is for Celiac disease, which is

a malabsorption disease caused by wheat gluten. Our doctor originally said he

looked like a celiac kid (really fat round tummy and super skinny limbs), and

then I told him that my mother-in-law has it. We were stumped that it came back

negative (no antibodies against gluten), however the test was done when we were

first trying to get him to eat and he may not have been exposed to wheat yet at

that time. They just retested him, and it takes a couple of weeks to hear back.

>

> I was thinking of avoiding milk for a while to see if that made any

difference, but I haven't yet since milk is his main diet. Anyway, thanks for

giving more possibilities to consider and discuss with 's doctor.

>

> Cheryl

>

> JBSalem@... wrote:

>

> > Cheryl -

> >

> > These may be repetitive questions (I haven't done email for a couple days),