New to the group

[Guest guest]

<<I live in Ohio and thankfully there is a philosophical exemption here

but I felt my best defense would be to get educated. This is such a

difficult subject and so hard to understand. My oldest, I feel may have

a form of ADD. I am RH negative and of course the rhogam they give

pregnant women at 28 weeks to prevent RH sensitization had mercury in

it. Nothing worse than exposing your fetus to mercury! Not to mention

I wouldn't eat tuna for fear of mercury exposure! I feel so betrayed by

our system, yet blessed that my children haven't contracted some

debilitating illness due to vaccines. >>

Welcome to this list and the truth! :-) I'm so glad that you've joined

us!

I'm in northern Ohio! (Hi neighbor!) I have 3 daughters, 10, 6, and 3.

My 10 was fully vaxxed until 4, my middle vaxxed until just under 18

mos., and my 3yo has had NONE. I, too, am Rh Neg and had those

disgusting Rhogam shots. My oldest daughter was dx'd IDDM at the age of

7, I believe due to her vaccines. She was on MDI therapy for the first

year and has since been on an insulin pump. She is starting puberty so

her blood sugars have been all over the place. :-/

If you ever need someone to talk to in Ohio just drop me a note! :-)

Ohio

)0(~~~)0(~~~)0(

Mom to Brittany, born 8/31/93, dx'd-IDDM 5/28/01; , born 6/28/97;

and Shayna, born 6/1/00.

Vaccine free since 1999! See our site and get more vaccine info at

http://users.adelphia.net/~tacousino/

Ask me how to help get the toxins out of your house. -

http://nomorechemicals.alturl.com

[Guest guest]

;

Will be interested in hearing your personal experiences with treatments.

Theories abound.

Do you have any thing or service to sell?

Thanks,

Adrienne

New to the Group

Greetings everone,

My name is . I'm a DVM with Lyme disease. (3 year

duration)

As Shelia has posted earlier, I'm interested the similarities

between chronic LD, CFIDS & FMS. My objective is not to try to

convince you that you all have Lyme disease...rather, I wish to

establish a dialogue and share information.

The pathogenesis, the clinical symptoms, and the treatments of our

disease appear strikingly similar.

I'm not here to recommend that antibiotics is the cure for for

CFS/FM...in most cases, it's not a cure for chronic LD either.

IMO, a successful tx must be much more comprehensive than that.

I hope I can contribute to the group...I know I'll be able to learn

some important information from you.

Warm regards,

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

------------------------------------------------------------------------------

[Guest guest]

Hi Adrienne,

Yes, I'm fully aware of the mass of theories...it get's quite

confusing. I'm a simple-minded country boy that likes to cut

through all that and get to the meat of the matter.

I am in the health and nutrition business. I was in it before I

contracted LD. My objective is not to advertise here. I have not

and will not use forums such as this to advertise my business.

I gather you've been bombarded with advertising and other commercial

stuff before.

I will use this forum for information only. I learn a lot from

groups such as this. I can usually contribute some info too.

I'm just interested in getting well...just like the rest of you.

Warm regards,

> ;

> Will be interested in hearing your personal experiences with

treatments. Theories abound.

> Do you have any thing or service to sell?

> Thanks,

> Adrienne

> New to the Group

>

>

> Greetings everone,

>

> My name is . I'm a DVM with Lyme disease. (3 year

> duration)

>

> As Shelia has posted earlier, I'm interested the similarities

> between chronic LD, CFIDS & FMS. My objective is not to try to

> convince you that you all have Lyme disease...rather, I wish to

> establish a dialogue and share information.

>

> The pathogenesis, the clinical symptoms, and the treatments of

our

> disease appear strikingly similar.

>

> I'm not here to recommend that antibiotics is the cure for for

> CFS/FM...in most cases, it's not a cure for chronic LD either.

>

> IMO, a successful tx must be much more comprehensive than that.

>

> I hope I can contribute to the group...I know I'll be able to

learn

> some important information from you.

>

> Warm regards,

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Welcome ! Im Shaye and I am little bit east of Rochester. I do CP

and MP. Maybe one day you will try CP. It's very easy actually.

Welcome to the group!

Shaye

new to the group

Hello to you all. I have been peeking in on your messages for a

while, and just thought I would jump in. I Live north of Syracuse

(where we received 51 " of snow last week) and just started making hot

process soap last summer. I have had a wonderful time of it but get

overwhelmed with all of the possibilities. Starting out with hot

process was so easy that I am reluctant to try cold process. I have

learned a lot from you already. I always look forward to seeing your

messages. Chat soon

[Guest guest]

Hi ,

Welcome to our group! I also started off with HP and haven't tried

CP yet. I plan to try CP sometime this spring since the texture is

different than HP.

H.

[Guest guest]

Welcome, !

Katy

in Naples

new to the group

Hello to you all. I have been peeking in on your messages for a

while, and just thought I would jump in. I Live north of Syracuse

(where we received 51 " of snow last week) and just started making hot

process soap last summer. I have had a wonderful time of it but get

overwhelmed with all of the possibilities. Starting out with hot

process was so easy that I am reluctant to try cold process. I have

learned a lot from you already. I always look forward to seeing your

messages. Chat soon

[Guest guest]

Welcome to a wonderful group . I am sure you'll find that the

folks here are friendly and very helpful.

> Hello to you all. I have been peeking in on your messages for a

> while, and just thought I would jump in. I Live north of Syracuse

> (where we received 51 " of snow last week) and just started making hot

> process soap last summer. I have had a wonderful time of it but get

> overwhelmed with all of the possibilities. Starting out with hot

> process was so easy that I am reluctant to try cold process. I have

> learned a lot from you already. I always look forward to seeing your

> messages. Chat soon

>

>

[Guest guest]

> I have been peeking in on your messages for a

> while, and just thought I would jump in.

Welcome ! Please feel free to " jump in " at anytime, we'd like

to hear about your soaping experiences. We'd even like to hear about

your snow! My husband tried for about 3 days in a row to get into

Oswego for work & just couldn't make it. He said lots of roads in

Oswego were down to one lane because there was nowhere to put the

snow. I hope you are staying safe & warm!

> Starting out with hot process was so easy that I am reluctant to try

cold process.

Oh you've got to try cp! I just made my first batch last week & it's

awesome. It was a lot easier than I thought it would be & I love how

smooth the soap is compared to hp. There's lots of folks here willing

to help out if you have any questions too.

Have a great day!

Colleen

Country Meadow Creations

http://www.countrymeadowcreations.com

[Guest guest]

> In , " " <smrichy@h...> wrote:

> >Hello to you all. I have been peeking in on your messages for a

> >while, and just thought I would jump in. I Live north of Syracuse

> >(where we received 51 " of snow last week) and just started making hot

> >process soap last summer. I have had a wonderful time of it but get

> >overwhelmed with all of the possibilities. Starting out with hot

> >process was so easy that I am reluctant to try cold process. I have

> >learned a lot from you already. I always look forward to seeing your

> >messages. Chat soon

> >

> >

>

>

Hi ! Welcome to the group! Where do you live? I'm in Liverpool.

Nice to have you here-you'll love this group-everyone is really helpful.

:-)

Carol J

[Guest guest]

Donnie,

In my experience there really is no tips and hints to get more regular work,

only get as many courses as you can, get as much experience ad hoc as possible

and alot of the time it is whether you are at the right place at the right time.

Work usually picks up in spring as all the vessels that have been laid up over

winter start work again

Good luck

Chris

new to the group

Hello to one and all my name is Donnie Munro and I am new to the group after

recently leaving the NHS currently living in Aberdeen.Completed my medics

course in January this year with Lee O Shea who gave me this web group and

have been working for Aon ever since.Used to work in Coronary care

,Intensive care and accident and emerngency all for about two years

apiece.And after much deilberation decided to give the offshore life a go

..So far i am quite impressed currently have been working on the bruce

platform for the last 3 months although that does now seem to be ending and

currently finding work difficult to get which is a real pain in the butt.

Any hints or tips for getting more regular work would be greatly

appreciated.Cheers Donnie.

_________________________________________________________________

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Member Information:

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ALL list admin messages (subscriptions & unsubscriptions) should be sent to the

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[Guest guest]

Hi Donnie,

welcome to the group ...! Enjoy the banter and don't be afraid to stick your ore

in when you see something you have feelings about ....

Good luck in your quest for more work - just keep your eyes & ed watch this list

as there are one or two jobs that pop up every now and then ...

best wishes

Ninian Northern Platform

new to the group

Hello to one and all my name is Donnie Munro and I am new to the group after

recently leaving the NHS currently living in Aberdeen.Completed my medics course

in January this year with Lee O Shea who gave me this web group and have been

working for Aon ever since.Used to work in Coronary care

,Intensive care and accident and emerngency all for about two years

apiece.And after much deilberation decided to give the offshore life a go .So

far i am quite impressed currently have been working on the bruce

platform for the last 3 months although that does now seem to be ending and

currently finding work difficult to get which is a real pain in the butt. Any

hints or tips for getting more regular work would be greatly

appreciated.Cheers Donnie.

_________________________________________________________________

Express yourself with cool new emoticons http://www.msn.co.uk/specials/myemo

Member Information:

List owner: Ian Sharpe Owner@...

Editor: Ross Boardman Editor@...

ALL list admin messages (subscriptions & unsubscriptions) should be sent to the

list owner.

Post message: egroups

Please visit our website http://www.remotemedics.co.uk

Regards

The Remote Medics Team

[Guest guest]

Welcome Becky! I'm in nearby Loudoun County. I'm glad to know that you

heard about this list at the McLean Bible Church conference on disabilities.

There are people with younger kids on the list - it helps to grab their

attention by putting something in the subject line. I'm not aware of any

lists for Down syndrome - Early Intervention age.

You can set your subscription to digest or no mail and read from the list.

The problem with digest is that people respond to a post without removing

all the text and it makes it harder to read. I usually pick something

according to the subject and then quickly scan the rest. I also work full

time and this works well for me.

I look forward to hearing more about Noah!

, mom to (23 and a grad student at American U), TJ (21 and an

ROTC cadet at WVU), Katey (16 and soon to get her license!) and the

incredible , age 10 with Down syndrome. Also mom to Snoop, Chiquita

and Fiona and Tim's better half!

new to the group

> Hi,

> I just wanted to introduce myself. My name is Becky and I have a one

> year old (his birthday was yesterday!) with Down Syndrome. Noah is

> our only child, and he is the most wonderful child in the world. We

> live in Germantown, MD and my husband and I are both teachers in

> Montgomery County. I just found out about this group through at an

> accessibility conference at McLean Bible Church. I have never

> participated in any groups on-line before, so I am wondering what the

> most effective way to use this site is. As I am sure with all of

> you, I am busy being a mom, so I don't have time to read hundreds of

> emails, but I really would like to communicate with others,

> especially parents of kids aroud Noah's age. Is there a way to scan

> the emails efficiently? Well, I am excited to get to know you all.

> Becky

>

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

[Guest guest]

Hi Sally,

Welcome to the group. My first thought about 's stomach aches were

celiac, but if shes been tested, then I had another thought- has she gotten her

period yet? Is it related possibly???

My daughter, , age 13 has DS, Diabetes type 1 and also Celiac- she has

an insulin pump which she is doing great with. Oh, I just thought of

something else- what about reflux?

Anyway, seems like and might have a lot in common- hope to hear

more about your family!

~ Mom to 13 DS and Diabetes Type 1 and 9 NY

[Guest guest]

Hi Simone,

The bathroom is my most difficult problem. I am not married (never have been,

unfortunately). I'm 52 and have been in a wheelchair since I'm 11. Until I

was 43, my parents helped me on the toilet. I was very fortunate in that I

didn't need to go to the bathroom very often when I was younger. I went to

school

all day and never had to use the toilet at school. I also worked part-time

until I was 41. When I was in my 30's, my bathroom needs began changing. I

developed a bad stomach, sometimes needing to take a bowel movement and

sometimes

needing to urinate an extra time during the day. There were times I had to call

my mom to come to my job. After I stopped working, because I had become weaker,

I started using a health aide during the day. The aides I had then were able

to lift me, so they put me on the toilet when we were home or out.

Unfortunately, the aides I have now can't lift me and we use the Hoyer lift.

That's fine

when we're home, but out of the house, I'm stuck. I always make sure I go

before I leave and don't stay out of the house too many hours. In the evening,

my

mom uses the Hoyer lift to put me on the bed and on the bedpan.My parents are

in their 70's and it's very difficult for them to lift me and will do so only

in emergencies when out of the house. Wherever I go, I'm always worrying that

I may have to use the toilet. Naturally, it makes traveling difficult.

While it's wonderful that you have a husband, the unfortunate thing is that

you probably can't get Medicaid to pay for a health aide. That is the main

reason lots of disabled people don't get married. They'll lose their benefits.

Some disabled people just live with their boyfriend/girlfriend or some have

gotten divorced in order to receive benefits. It's so unfair, but that's how it

is.

I really don't have a bathroom solution. I know that some people wear diapers

(Depends) out of the house. I would hate to do that, as I'm sure you must

feel wet after peeing in your pants. I'm afraid that someday, unfortunately,

that

may be my answer. Maybe others who wear Depends could tell us what it's like.

Be well, Simone, I hope we'll find answers.

[Guest guest]

Oh geeze the bathroom urge, oh please don't let me pee in my pants, or why

did I drink that last drink is a woman's worst nightmare with women of SMA.

I am 46 and have SMA II & III. When I was younger I never used the bathroom

outside my home especially at school. As I got older I lost control over my

bladder. Either I couldn't hold it or couldn't relief myself when I was in the

bathroom. I ended up having to do intermittent catheter, what a nightmare

again. I now use a regular catheter and I to get the famous pseudomonas which

usually goes to my bloodstream. Then I get IV's for weeks. I'd like a super

pubic but can't go under antistia (crappy speller ). I have a pic line in for

IV's

when needed.

I don't hear much on the site about others being totally incontinent. I am

both ways. If I don't sit on the toilet for bowel movement every other day

I'll have accidents. I've been tested for several things but everything comes

out okay. If I get the urge I go no stopping it. My neurologist say it has to

do with the neurological condition. All I know is give me an enema or

suppository I pass out. My blood pressure hits rock bottom in a heart beat.

Does

anybody have this problem?

[Guest guest]

Hi Simone,

Welcome to the list! I'm Alana, SMA2, am 37, and have very limited

mobility. Bathrooming has been my biggest problem for years. I have

public assistance plus a salary to pay for my care, and employees who are

willing to meet me at home, work, boyfriend's house...wherever. But it

took so much time and physical energy to pee that by the time I was back in

my chair I had to pee again. And even with government aid, it didn't match

my frequent need to pee.

I restricted my fluid intake and developed kidney stones as a result. At

the time I was able to pass them, but it hurt like hell. Later I got

endless UTIs so was often on antibiotics. I began wearing adult

diapers. They helped some, but eventually I got a pseudomonas

infection

http://www.healthatoz.com/healthatoz/Atoz/ency/pseudomonas_infections.html

that requires IV antibiotics. We discovered that the bacteria was being

hosted by a 2 1/2 cm kidney stone in my right kidney that has reduced that

kidney's function. I could live for a while like that, on and off IV meds

for a year, but it's not a good plan.

In July I had minor surgery to insert a suprapubic catheter - a tube in my

belly that drains my bladder just above my pubic bone. The hope was that

if I could drink enough fluids the infection would go away or at least

lighten up. It's been a challenge to get used to the catheter (I'm happy

to answer questions about this), and the 1st 3 months were painful, but I

have no regrets at all. Now I'm well hydrated, less fatigued, have better

circulation, and best of all I'm not distracted by a constant urge to

pee. I have a night drainage bag discreetly hidden in a black bag hanging

from the side of my chair that is emptied and cleaned when I go to bed. I

use a different bag hanging on the side of my bed overnight.

This spring I'll have surgery to remove the stone and will hopefully be

done with IV meds and this frightening infection.

Let me know if you have any questions.

Cheers!

Alana

Berkeley, CA

USA

[Guest guest]

Hi ,

Nice to meet you. According to my hubby I'm a itty bitty thing so

lifting shouldn't be a problem. It's finding and paying for someone

to assist. Right now, the insurance we have will only pay for 96

hours and we surely cannot pay for the rest.

When we were first married I did what I did when I was in school, just

went in the evenings when he was home. But last year I got a UTI and

the doctor said holding it was a bad idea, so now he has to travel

back and forth. I guess things would be different if we were both

working, we'd be able to afford the home health care easily. But

because of circumstances I'm unable to work right now.

I'm not sure if I'm eligible for Medicaid, but my sister also has SMA

and is married and she has Medicare.

Simone

> Hi Simone,

>

> The bathroom is my most difficult problem. I am not married (never

have been,

> unfortunately). I'm 52 and have been in a wheelchair since I'm 11.

Until I

> was 43, my parents helped me on the toilet. I was very fortunate in

that I

> didn't need to go to the bathroom very often when I was younger. I

went to school

> all day and never had to use the toilet at school. I also worked

part-time

> until I was 41. When I was in my 30's, my bathroom needs began

changing. I

> developed a bad stomach, sometimes needing to take a bowel movement

and sometimes

> needing to urinate an extra time during the day. There were times I

had to call

> my mom to come to my job. After I stopped working, because I had

become weaker,

> I started using a health aide during the day. The aides I had then

were able

> to lift me, so they put me on the toilet when we were home or out.

> Unfortunately, the aides I have now can't lift me and we use the

Hoyer lift. That's fine

> when we're home, but out of the house, I'm stuck. I always make sure

I go

> before I leave and don't stay out of the house too many hours. In

the evening, my

> mom uses the Hoyer lift to put me on the bed and on the bedpan.My

parents are

> in their 70's and it's very difficult for them to lift me and will

do so only

> in emergencies when out of the house. Wherever I go, I'm always

worrying that

> I may have to use the toilet. Naturally, it makes traveling

difficult.

>

> While it's wonderful that you have a husband, the unfortunate thing

is that

> you probably can't get Medicaid to pay for a health aide. That is

the main

> reason lots of disabled people don't get married. They'll lose their

benefits.

> Some disabled people just live with their boyfriend/girlfriend or

some have

> gotten divorced in order to receive benefits. It's so unfair, but

that's how it is.

>

> I really don't have a bathroom solution. I know that some people

wear diapers

> (Depends) out of the house. I would hate to do that, as I'm sure you

must

> feel wet after peeing in your pants. I'm afraid that someday,

unfortunately, that

> may be my answer. Maybe others who wear Depends could tell us what

it's like.

>

> Be well, Simone, I hope we'll find answers.

>

>

>

>

>

[Guest guest]

Simone -

I wish I did. I'm in the same boat as you. No home health care

coverage and no extra money to pay for it out of pocket.

Jenn

Simone Egerter wrote:

> Hi,

>

> I'm Simone, 30 years old from Massachusetts, married

> to my best friend Steve for 2 1/2 years. I have SMA

> type 2 and was diagnosed with SMA when I was a year

> old.

>

> I was wondering how you all manage with the bathroom

> during the day. I'm currently confined to a

> wheelchair and my muscle strength is extremely

> limited. Right now my husband comes home every day at

> lunch time to assist me since we cannot afford Home

> Health Care and I'm not eligible for social security.

> Does anyone have any tips to assist me?

>

> Simone

>

[Guest guest]

Simone wrote:

> Right now, the insurance we have will only pay for 96

> hours and we surely cannot pay for the rest.

Actually, you're in a better situation than me then. My Medicare covers

nothing. And I haven't had Medicaid for over 10 years because my

husband's income just pushed us over the extremely low financial

threshold in Ohio. I'll be married 13 years in June and I've never had

any home health care hours during that whole time. I guess they figure

your spouse is supposed to do it all, whether they have a full time job

or not. The whole medical system sucks frankly. They penalize us for

getting married. Grr...

Jenn (again)

[Guest guest]

Hi Everyone,

I have a weird situation at work. I use a bathroom called the Mommy room

it's also the room where new moms go to pump milk during the day. I use this

bathroom because it's single stall and I can keep my table in it that I lay

on to get my pants on and stuff and I still have some privacy. My work says

that they don't want me to use that room. They gave me a huge yellow sign to

carry with me to the bathroom that says restroom closed. I don't want to do

this because it's humilating to walk through the building carring a sign

letting everyone know that I'm going to the bathroom and it's embarrasing to

close a bathroom just for me. I told them no before but today they told me

that I have to use the sign. any suggestions?

Thanks,,

_________________________________________________________________

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[Guest guest]

Your employer must make reasonable accommodations so that you can use the

restroom. It seems that the solution you had before, using the Mommy Room,

made the most sense. It's possible they received complaints from women that

couldn't get in it when they needed to lactate. Making you carry around a

sign seems humilating, I would hope your employer could come up with

something better than that.

If your employer is a big company they should have more options to them

since spending a little money wouldn't be considered an undue hardship.

Could the bathroom be modified to make a really big stall? I've seen some

stalls that are big enough to live in with a few room-mates to boot.

Do you have a uni-sex bathroom? Would they consider building one?

Obviously, if your employer is a small business, they aren't going to be

able to do this. I work for a big corporation. One example of an

accommodation made for me was re-building a bathroom in a really old

building that I had to go to every know and then for meetings. The previous

bathroom was unaccessible. $60,000 later, I had a lovely can to use. They

even put a mink cover on the toilet-seat the first time I used it. Funny as

heck.

Re: Re: New to the group

> Hi Everyone,

> I have a weird situation at work. I use a bathroom called the Mommy room

> it's also the room where new moms go to pump milk during the day. I use

this

> bathroom because it's single stall and I can keep my table in it that I

lay

> on to get my pants on and stuff and I still have some privacy. My work

says

> that they don't want me to use that room. They gave me a huge yellow sign

to

> carry with me to the bathroom that says restroom closed. I don't want to

do

> this because it's humilating to walk through the building carring a sign

> letting everyone know that I'm going to the bathroom and it's embarrasing

to

> close a bathroom just for me. I told them no before but today they told me

> that I have to use the sign. any suggestions?

> Thanks,,

>

>

> _________________________________________________________________

> MSN Toolbar provides one-click access to Hotmail from any Web page - FREE

> download! http://toolbar.msn.com/go/onm00200413ave/direct/01/

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

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>

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> List manager: (Sexy Mature Artist) Email: Esma1999@...

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>

>

>

>

>

[Guest guest]

jessica,

check with the job accommodation network - they're great on this stuff.

http://www.jan.wvu.edu/

alana

[Guest guest]

Hi ,

My son was put in his first cast at 9 months old and has tolerated it extremely well. He is 11 months old now and has started to walk with the help of the fisher price walker. He actually almost runs now. We have no problems with breathing because Dr. D'Astous cut out a huge hole in his tummy. If you check out the pictures on the group you can see in his cast. My olde son had mild hypotonia and had Kyphosis as a baby. He will always have hypotonia but grew out of the kyphosis by 2 years old. Does your daughter have a specific diagnosis or just Hypotonia? Did you go through all of the Metabolic testing that we went through?

We have 2 other little boys here who have done casting and bracing also. Both had a really rough time in the brace and no troubles with the cast. There are so many opening on the cast and it also gives a little after a while so that is possibly the difference. Dr. D'Astous is our Dr. in Utah ar Shriners Hospital. He is awesome and has an incredible bedside manner. We are really happy with him. We live in Southern California so we travel there to see him. Please feel free to email me privately if you would like any more info.

Crista

[Guest guest]

,

Can yoo provide us with an exact definition of Prader Willie Syndrome?

Thanks,

HRH

[Guest guest]

Hello again!

I contacted 's doctor day with a " ton " of information that I

got from this and the infantile scoliosis site. His very quick

response was that he was not aware of some of the info that I gave

him and that it was interesting but and a I quote

" 's scoliosis is not the " infantile " type. I would recommend

that you contact the physicians you have listed and ask them if they

have had any success with scoliosis in Prader Willi Syndrome. If so

or if they are willing, send 's X-Rays to them for review.

Please let me know what you decide. "

Wow what a big help he is!!!

Anyway, first I am blown away by it is not infantile scoliosis. So

I look up congential scoliosis and read on the National Scoliosis

Foundation websites resource page. As I am reading, I did not note

anything listed there being mentioned to us. As a matter of fact,

the MRI was okay and we were told that there might be a problem with

the vertebrae but then told that there was not. However, the very

last point that the doctor on NSF makes is that a child with

congential scoliosis often has a small patch of hair somewhere along

the spine. At birth, did in fact have a small patch of hair

at the base of her spine right were the butt crack begins. It did

go away but I have no idea when.

Now, I cannot get in touch with the doctor to find out what he means

by this. Does he mean it is congential because she also has Prader-

Willi syndrome or is there something that we have not been clearly

informed of.

I know none of you can really answer this question but any input

would be greatly appreciated. This just means yet another sleepless

night for me!

Thanks for your input.

Mayes

> Hello:

>

> My name is . My daughter, , is 17 months old. We

noticed

> that something was not right with 's back at about 5

months.

> also has a genetic disorder that causes extremely low

muscle

> tone so the doctors felt that the low tone was causing the

problem.

> At 6 months, I insisted that her back be x-ray'd. The x-ray

showed

> a 23 degree curve. The Orthopedic said lets just watch it for a

> while. He felt that because her ribs were assymetric (? spelling)

> that 's curve would not progrss. We went back at 11 months

to

> learn that she had progressed to 38 degrees lying down and 50

> sitting up. We now have a TLSO that she is suppose to wear but

she

> does not tolerate it at all. She still has low muscle tone and

> still uses mostly her stomach muscles to breath, therefore, she

> needs oxygen when she sleeps in the TLSO. Of course, I again had

to

> insist that a sleep study be done because the orthopedic did not

> really believe that she was that uncomfortable in the brace. Now

> knowing that the brace is only correcting her to 37 degrees

sitting

> up, I am looking for other alternatives. I have tried to read as

> many of your post as possible but decided it would be easier to

ask

> specific questions. So here they are for anyone who can help.

>

> 1. I have noticed that come of the children have not been put in

> cast - what are the reasons for not casting?

>

> 2. Do any of your children also have issues with low muscle tone?

>

> 3. We have had an MRI that came back normal, 's hips have

> been xray'd and they are normal, her ribs seem to be normal. Are

> there any other issues that we need to look into?

>

> 4. We are in Atlanta and I cannot find a doctor who cast here -

Who

> do you recommend as the best? I don't want this to sound bad but

I

> only want someone who has experience and success with casting. In

> other words, I am looking for the best!

>

> 5. Have most of you found that the children tolerate the cast

> better than the brace?

>

> I appreciate the time that you can spend helping with our

> decisions. It is amazing how much you learn from parents and how

> little you learn from doctors!

>

> Thanks and God bless you all.