New Member

[Guest guest]

We were lucky enough to find an in house daycare in the neighborhood.

At times I felt guilty leaving with someone else when he was sick,

but it was really the only way to make it work.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(9), and Kate(4)

Philadelphia, PA

" hannahls73 " <hannahlsmith@...>

Sent by:

01/22/2007 10:30 AM

Please respond to

To

cc

Subject

Re: new member

My parents watch my son for me when he is sick - otherwise I have NO

idea how people cope. It has to be terribly hard.

I hate not being with him when he's sick though - but I don't really

have any other choice - I am a teacher and they have to get subs etc.

to fill in for me . . .

Good luck!

Hannah

Aidan - fevering 21 months - 3 years old

Sid - 5

[Guest guest]

LOL! My bets is that these jerks get a commission or kickback for everything they prescribe. And I would also bet that these scumbags at pfizer are so beside themselves over losing the rights as well as producing that other failure that kills people they're throwing everything in to the commission pile for these md's to be extra motivated to prescribe lipitor rather than one of the other poisons. The fkersEd Gundy <edgundy@...> wrote: We now have another member and they wrote in their request the following statement.Recently prescribed Lipitor without my input. Experiencing strange (what I think are) side effects. Been to 4 doctors and they all act like I am speaking Swahili.Would anyone like to respond to this?Ed

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

>

> We now have another member and they wrote in their request the

following

> statement.

>

> Recently prescribed Lipitor without my input. Experiencing strange

(what

> I think are) side effects. Been to 4 doctors and they all act like

I am

> speaking Swahili.

>

> Would anyone like to respond to this?

>

> Ed

>

Hi

Funny that you mention Swahili. You might as well go to a witch

doctor. If my experience is typical you cannot convince an MD that

statins ruined your health. Like the mom who will not believe her son

is a killer they seem to have a blind spot. It doesn't help that

they've been trained to see us as fools. Starting with the witch

doctors that preceded them they use fear and intimidation to seperate

us from our money. They disrespect and ridicule us. The government

[us] has given them far too much power and yet we run to them,

checkbook in hand, expecting them to do what they have no track

record of doing. Think for yourself, and if you must deal with a doc

keep in mind that the relationship is pretty much the same you would

have with your plumber. Like an Arab terrorist they respond to

strength not weakness or reason.

Be well

Art

[Guest guest]

Thanks Art.

I had a mild stroke early in November. I spent 6 days in the

hospital taking whatever they gave me, but investigated all of it

when I got out. The first poison I got rid of (with my neurologists

blessing) was coumadin. I have replaced it with aspirin. I then

began to hear horror stories about statins. When I found this site,

I was amazed at some of the stories I am reading. I am trying to be

objective about this and not buy into mass hysteria, but it is

becoming more plausible that the things I have been experiencing on a

regular basis (lower back pain, ankle pain, headaches, tinnitis,

difficulty concentrating)have begun AFTER I left the hospital and

seem to be consistant with other people. I am stopping the Lipitor

for a while and began taking 2000 units Vitamin C and a quality fish

oil to see if some of the symptoms subside. I have an appointment

with another doctor next week. I hope I can talk sensibly to him.

Thanks for listening,

Dan

> >

> > We now have another member and they wrote in their request the

> following

> > statement.

> >

> > Recently prescribed Lipitor without my input. Experiencing

strange

> (what

> > I think are) side effects. Been to 4 doctors and they all act

like

> I am

> > speaking Swahili.

> >

> > Would anyone like to respond to this?

> >

> > Ed

> >

> Hi

> Funny that you mention Swahili. You might as well go to a witch

> doctor. If my experience is typical you cannot convince an MD that

> statins ruined your health. Like the mom who will not believe her

son

> is a killer they seem to have a blind spot. It doesn't help that

> they've been trained to see us as fools. Starting with the witch

> doctors that preceded them they use fear and intimidation to

seperate

> us from our money. They disrespect and ridicule us. The government

> [us] has given them far too much power and yet we run to them,

> checkbook in hand, expecting them to do what they have no track

> record of doing. Think for yourself, and if you must deal with a

doc

> keep in mind that the relationship is pretty much the same you

would

> have with your plumber. Like an Arab terrorist they respond to

> strength not weakness or reason.

> Be well

> Art

>

[Guest guest]

Coumadin. My mom has been on that for years and it is a pain in the neck drug. Always getting blood tests etc. If you had a stroke, you should up your potassium intake. negrid00 <dan.negris@...> wrote:

Want to start your own business? Learn how on Small Business.

[Guest guest]

welcome to the group kim .please feel free to vent, ask,or give advice on whatever you feel you need to . good luck to you and your family

New Member

HiI am a new member and just wanted to take a minute to introduce myself. My name is Kim and I live in Westchester, NY with my husband and my son Tighe. Tighe will be 3 in April and was diagnosed as PDD-NOS. Since July we have been receiving ABA 5 times a week, ST and OT 3 times a week. I feel like we are making some progress. He does speak a bit and knows a few signs, which has really cut down on the frustration levels. His CPSE evaluations are coming up this month and we are a bit worried about the transition, but I am trying to prepare myself to ask for the moon.Anyway, I am looking forward to getting to know people here and share storiesKim

Want to start your own business? Learn how on Small Business.

[Guest guest]

<<Hi Everyone!I just joined your group. I basically do just Firm videos. >>

Hi Kim,

Welcome!

So what FIRMS do you have? I usually do one FIRM a week, often Volume 1. But lately I've been doing Jari Love's Get Ripped instead...

Anny

[Guest guest]

Hi Anny! I have a ton of them! Too many to list. I did try a Cathe workout but I just couldn't keep up. I've never heard of Jari Love, how do you like it? KimGerard & Leonie Westenberg <westen@...> wrote: <<Hi Everyone!I just joined your group. I basically do just Firm videos. >> Hi Kim, Welcome! So what FIRMS do you have? I usually do one FIRM a week, often Volume 1. But lately I've been doing Jari Love's Get Ripped instead... Anny "It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life gifts me with a piece of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are."

[Guest guest]

Hi kim!

I love the FIRM, too. Which workouts do you do/have?

I have pretty much everything they ever released. I

think I like the old ones the best, they seem more

effective and I'm just " bonded " to them,if that makes

sense? THey are what got me strength training! I've

been going through the old ones since the first of the

year and really notice a difference in my

strength/stamina. I usually do 3 a week and then mix

in 3 days of other stuff and one rest day.

Take care!

Donna

--- kim2labs9 <k.theriault@...> wrote:

> Hi Everyone!

> I just joined your group. I basically do just Firm

> videos. I have 1

> Kest Yoga video but I've only done abou 10

> minutes of it. My

> daughter & husband kept interrupting so I just gave

> up. I do Firm

> videos 5 days a week. I try to fit in a Yoga video

> on my days off but

> I don't always find the time, that's why they have

> been picked for my

> rest days in the first place.

>

> I look forward to getting to know everyone.

> Kim

>

>

________________________________________________________________________________\

____

TV dinner still cooling?

Check out " Tonight's Picks " on TV.

http://tv./

[Guest guest]

kim2labs9 wrote:

> Hi Everyone!

> I just joined your group.

hi kim! welcome to the group! it is nice to meet you here.

congrats on getting your firm videos done each day... thats great!

do you prefer the classics or the various body sculpting systems?

did you hear the recent announcement about a whole bunch of new

firms coming out soon?

it is hard for me to fit my yoga in tooo... we need to work on

that one

:*carolyn.

[Guest guest]

Hi Donna! I have quite a few. Not all of them but close. The older ones are definitely tougher. I'm think about mixing it up a bit, for a bit of a change. I wonder what DH is going to think when he sees me buying more. I'm reading reviews about other workout videos. Any suggestions would be great.Donna M-P <donna112520@...> wrote: Hi kim!I love the FIRM, too. Which workouts do you do/have? I have pretty much everything they ever released.

Ithink I like the old ones the best, they seem moreeffective and I'm just "bonded" to them,if that makessense? THey are what got me strength training! I'vebeen going through the old ones since the first of theyear and really notice a difference in mystrength/stamina. I usually do 3 a week and then mixin 3 days of other stuff and one rest day.Take care!Donna--- kim2labs9 <k.theriaultsbcglobal (DOT) net> wrote:> Hi Everyone!> I just joined your group. I basically do just Firm> videos. I have 1 > Kest Yoga video but I've only done abou 10> minutes of it. My > daughter & husband kept interrupting so I just gave> up. I do Firm > videos 5 days a week. I try to fit in a Yoga video> on my days off but > I don't always find the time, that's why they have> been picked for my >

rest days in the first place.> > I look forward to getting to know everyone.> Kim> > __________________________________________________________TV dinner still cooling? Check out "Tonight's Picks" on TV.http://tv./

[Guest guest]

Hi Carolyn! I have heard about the new ones! I actually pre-ordered a few on Amazon. I'm out of control when it comes to buying Firm workouts! KimFestival City Concrete <pvisser@...> wrote: kim2labs9 wrote:> Hi Everyone!> I just joined your group. hi kim! welcome to the group! it is nice to meet you here.congrats on getting your firm videos done each day... thats great!do you prefer the classics or the various body sculpting systems?did you hear

the recent announcement about a whole bunch of new firms coming out soon?it is hard for me to fit my yoga in tooo... we need to work on that one :*carolyn. "It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life gifts me with a piece of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are."

[Guest guest]

Hi Kim!

Welcome to the group! I look forward to hearing about your workouts!

New Member

Hi Everyone!I just joined your group. I basically do just Firm videos. I have 1 Kest Yoga video but I've only done abou 10 minutes of it. My daughter & husband kept interrupting so I just gave up. I do Firm videos 5 days a week. I try to fit in a Yoga video on my days off but I don't always find the time, that's why they have been picked for my rest days in the first place.I look forward to getting to know everyone.Kim

[Guest guest]

Hi ! Thank You! Kimnancydewolf <nancydewolf@...> wrote: Hi Kim! Welcome to the group! I look forward to hearing about your workouts! New Member Hi Everyone!I just joined your group. I basically do just Firm videos. I have 1 Kest Yoga video but I've only done abou 10 minutes of it. My daughter & husband kept interrupting so I just gave up. I do Firm videos 5 days a week. I try to fit in a Yoga video on my days off but I don't always find the time, that's why they have been picked for my rest days in the first place.I look forward to getting to know everyone.Kim

[Guest guest]

Hi Kim, I'm Jen from Michigan. I am single and live with two crazy Siamese cats (they are my kids LOL) I haven't been able to get back on the exercise wagon because of some female issues but I hope to start exercising again soon. I like doing Beach body videos, Gilad videos, really a little bit of everything in addition to walking, riding exercise bike, bowling and playing volleyball. You will LOVE it here, all of the people are very nice a supportive. Welcome, Jen kim2labs9 <k.theriault@...> wrote: Hi Everyone!I just joined your group. I basically do just Firm videos. I have 1 Kest Yoga

video but I've only done abou 10 minutes of it. My daughter & husband kept interrupting so I just gave up. I do Firm videos 5 days a week. I try to fit in a Yoga video on my days off but I don't always find the time, that's why they have been picked for my rest days in the first place.I look forward to getting to know everyone.Kim

[Guest guest]

Hi Kim,

Welcome to the list. I’m

and I live with my bf and our 3 children (ages 7,7 and almost 4) and our

cat. I started out exercising with The Firm: Volume One when it first

came out. It was my first introduction to weight work and aerobics. I sill have

a fond place in my heart for The Firm workouts but I’ve branched out and

now do just about everything: yoga, dance, Pilates, kickboxing, etc. I love

trying new things. I do some Cathe weight work but I’m a bit of a klutz

and I trip over my step doing her step work lol. I try to do yoga at least once

a day. I have 15 to 20 minute sessions for the times I don’t have much

time. The Yoga Zone ones are great for people who need good instructions

with their yoga and I love the Body Wisdom ones because you can pick the

workout you need (there are a ton of different practices on them ranging from

15 minutes to 90 mins, I think, maybe longer) I like Yoga Complete for Everyone

best because it has a really great foot practice, but I also like Power Yoga

for Everyone and Yoga Complete for Weight Loss – I got mine in a 4 pk with

Yoga for Inflexible People. I remember it being about the same price to

buy the pack as to buy one so I just got them all lol.

Hope you enjoy it here!

Hi Everyone!

I just joined your group. I basically do just Firm videos. I have 1

Kest Yoga video but I've only done abou 10 minutes of it. My

daughter & husband kept interrupting so I just gave up. I do Firm

videos 5 days a week. I try to fit in a Yoga video on my days off but

I don't always find the time, that's why they have been picked for my

rest days in the first place.

I look forward to getting to know everyone.

Kim

_,_._,___

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No virus found in this incoming message.

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No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.411 / Virus Database: 268.17.39/687 - Release Date: 2/14/2007

[Guest guest]

Hi Jen! Thank You for the warm welcome! Kim from Michigan <volleyjen0416@...> wrote: Hi Kim, I'm Jen from Michigan. I am single and live with two crazy Siamese cats (they are my kids LOL) I haven't been able to get back on the exercise wagon because of some female issues but I hope to start exercising again soon. I like doing Beach body videos, Gilad videos, really a little bit of everything in addition to

walking, riding exercise bike, bowling and playing volleyball. You will LOVE it here, all of the people are very nice a supportive. Welcome, Jen kim2labs9

<k.theriaultsbcglobal (DOT) net> wrote: Hi Everyone!I just joined your group. I basically do just Firm videos. I have 1 Kest Yoga video but I've only done abou 10 minutes of it. My daughter & husband kept interrupting so I just gave up. I do Firm videos 5 days a week. I try to fit in a Yoga video on my days off but I don't always find the time, that's why they have been picked for my rest days in the first place.I look forward to getting to know everyone.Kim "It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life gifts me with a piece of their heart. If I live

long enough, all the components of my heart will be dog, and I will become as generous and loving as they are."

[Guest guest]

Hi ! Thank You for the warm welcome and the reviews on the Yoga workouts! I'm not flexible at all! Those sound right up my alley! Kim Sprague <kittyn@...> wrote: Hi Kim, Welcome to the list. I’m and I live with my bf and our 3 children (ages 7,7 and almost 4) and our cat. I started out exercising with The Firm: Volume One when it first came out. It was my first introduction to weight work and aerobics. I sill have a fond place in my heart for The Firm workouts but I’ve branched out and now do just about everything: yoga, dance, Pilates, kickboxing, etc. I love trying new things. I do some Cathe weight work but I’m a bit of a klutz and I trip over my step doing her step work lol. I try to do yoga at least once a day. I have 15 to 20 minute sessions for the times I don’t have much time. The Yoga Zone ones are great for people who need good instructions with their yoga and I love the Body Wisdom ones because you can pick the workout you need (there are a ton of different practices on them ranging from 15 minutes to 90 mins, I think, maybe longer) I like Yoga Complete for Everyone best because it

has a really great foot practice, but I also like Power Yoga for Everyone and Yoga Complete for Weight Loss – I got mine in a 4 pk with Yoga for Inflexible People. I remember it being about the same price to buy the pack as to buy one so I just got them all lol. Hope you enjoy it here! Hi Everyone!I just joined your group. I basically do just Firm videos. I have 1 Kest Yoga video but I've only done abou 10 minutes of it. My daughter & husband kept interrupting so I just gave up. I do Firm videos 5 days a week. I try to fit in a Yoga video on my days off but I don't always find the time, that's why they have been picked for my rest days in the first place.I look forward to getting to know everyone.Kim _,_._,___ --No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.411 / Virus Database: 268.17.39/687 - Release Date:

2/14/2007 --No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.411 / Virus Database: 268.17.39/687 - Release Date: 2/14/2007 "It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life gifts me with a piece of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are."

[Guest guest]

Hi Kim,

I have all the older ones and most of the BSS1-4

releases. I didn't buy any of the new ones that came

with stuff - like the ball, band, etc. I did buy the

Ultimate Fat Blaster one (I can't keep the titles

straight)and thought it was okay - not nearly as tough

as the older ones. Did you see on VF there was a

thread about 12 new ones coming out?! Supposedly no

special equipment required. That sounds promising.

Take care!

Donna

--- Theriault <k.theriault@...>

wrote:

> Hi Donna!

> I have quite a few. Not all of them but close.

> The older ones are definitely tougher. I'm think

> about mixing it up a bit, for a bit of a change. I

> wonder what DH is going to think when he sees me

> buying more. I'm reading reviews about other

> workout videos. Any suggestions would be great.

>

>

________________________________________________________________________________\

____

It's here! Your new message!

Get new email alerts with the free Toolbar.

http://tools.search./toolbar/features/mail/

[Guest guest]

<<I've never heard of Jari Love, how do you like it?>>>

Jari Love has a series of workouts mainly based on high rep/lower weights. I only have her first workout - Get Ripped. Its about 55 minutes long and though its not super hard I find I really like the high reps bit. Its a bit like a Body Pump class. It needs more ab work but overall I really like it and plan on doing it twice a week this month.

I'd like to get another of Jari's - maybe Slim and Lean...

Anny in Australia

[Guest guest]

Hi ,

You're not going crazy! Know that we have all been in your shoes!

Try reading a few of the messages (type in key words that relate to

your son in the " search " section ie " school attendance " ).

I received the following email link this week and found it very

helpful! Here is a great link that clearly explains the

different disorders and their symptoms:

http://www.printo. it/pediatric-rheumatology/ information/ UK/pdf/13_

FEVER_UK. pdf I think Fran also has this in the links section. This

is one you should read and take to your ped if they are not familiar.

I think most of us are all trying to find answers. I know if can be

SO frustrating when the ped. doesn't even know/understand what is

going on. Just keep advocating and read as much as you can.

Welcome ... and remember ... you're not crazy!

Micaela

(4) Pfapa ... still working on a diagnosis

>

> Hello!

> My name is and I have a five year old that was recently

diagnosed with Periodic Fever Syndrome. When my husband and I

finally received a diagnosis we were very excited because for the

first time in 5 years we were not being told, " its just a virus " by

docators and then sticking our son in the hospital with IV's until

the fevers went away. I have read many of your e-mails and I feel

very lost I don't know what half of the stuff I am reading means. My

son is seeing a pediatrician that admits to knowing nothing about

PFAP, and we live in a tomwn of 1000 people. The only way I got

Larry diagnosed is by threatening my doctor with taking Larry to MAYO

clinic. He finally sent us to an infectionous disease specialist who

diagnosed it gave us a dose of steroids and sent us on our way. Is

this a disorder that needs supervision? I am also getting ready to

have a meeting with the school because Larry has missed so much this

year (he is in kindergarten). I explained to

> them the PFAP but everybody just looks at me like I'm one of those

crazy mothers. Larry constantly complains about leg pain and tummy

aches. He fevers about every six weeks. However his tummy problems

have gotten so bad that he has to carry a bucket to lunch at school

because he vomits at the smell of something yucky (he is very

sensitive to smells before and after an episode). I would like to

know where I start. How do I explain to the school what Larry has

when I don't even have it? I do I explain it to Larry? Help! I

feel like I am going crazy! After all this I probably sound like I

am crazy:). Any help on where to begin would be helpful . Thanks,

>

>

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

> 8:00? 8:25? 8:40? Find a flick in no time

> with the Search movie showtime shortcut.

>

>

[Guest guest]

Hi ,

I know what you mean about the blank stares at the crazy mom!!!! I too get

those- I'm sure we all do. My son, Spencer is 5 & also in Kindergarten. We've

been lucky, so far the episodes have been hitting during long weekends,

conference times & winter break- so he hasn't missed but a couple days of

school. Therefore I have'nt had to give the " dreaded " school talk. However, I

have had to deal with daycare. He goes to a private home with 6 other kids-

various ages. I feel so bad, when he has an episode, if any other kid in the

group gets even a sniffle- it must have been caught from Spencer. I swear, I

feel like they treat the poor kid like a lepper. I went online & printed out

several reports on & distributed to the provider & other parents & made

sure to hightlight certain things for them (especially the part about it not

being contagious). That seemed to ease their minds a little and gets the

questions off my back. As far as explaining to Larry, I bet you

would be suprised how much you don't have to tell him. Spencer just knows when

he is about to get hit with an episode & kind of goes on auto pilot. He gets

very clingy & cuddly. That seems to be the only upside to this disorder- extra

snuggle time with your baby that is growing way too fast!!!! I hope this helps.

We are scheduled for a tonsillectomy in March so hopefully the fevers go away &

I never have to explain to the school (Here's to hoping!!!!!) Best of luck with

your son...

Zieammermann <melissazieammermann@...> wrote:

Hello!

My name is and I have a five year old that was recently diagnosed

with Periodic Fever Syndrome. When my husband and I finally received a

diagnosis we were very excited because for the first time in 5 years we were not

being told, " its just a virus " by docators and then sticking our son in the

hospital with IV's until the fevers went away. I have read many of your e-mails

and I feel very lost I don't know what half of the stuff I am reading means. My

son is seeing a pediatrician that admits to knowing nothing about PFAP, and we

live in a tomwn of 1000 people. The only way I got Larry diagnosed is by

threatening my doctor with taking Larry to MAYO clinic. He finally sent us to

an infectionous disease specialist who diagnosed it gave us a dose of steroids

and sent us on our way. Is this a disorder that needs supervision? I am also

getting ready to have a meeting with the school because Larry has missed so much

this year (he is in kindergarten). I explained to

them the PFAP but everybody just looks at me like I'm one of those crazy

mothers. Larry constantly complains about leg pain and tummy aches. He fevers

about every six weeks. However his tummy problems have gotten so bad that he

has to carry a bucket to lunch at school because he vomits at the smell of

something yucky (he is very sensitive to smells before and after an episode). I

would like to know where I start. How do I explain to the school what Larry has

when I don't even have it? I do I explain it to Larry? Help! I feel like I am

going crazy! After all this I probably sound like I am crazy:). Any help on

where to begin would be helpful . Thanks,

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

8:00? 8:25? 8:40? Find a flick in no time

with the Search movie showtime shortcut.

[Guest guest]

Hi Alison, I don't have the experience with the feeding issues, so I may not be

much help. I " m sure there is another MOM who may have dealt with this that will

chime in soon!

My question is, what are you doing for Fraser's treatment?

It seems to me that he has a pretty large curvature and is 18 m old and if

you've been on a " journey " for 12m now, hopefully you've achieved some

correction?

It's good to " meet " you and I sure hope you get the answers you were looking

for.

My son, Evan, was diagnosed at 3m old and when he went into his first cast was

at 46 degrees and now in his seventh cast is at 11.

Good luck.

and Evan

scottie039 <gaz_ali@...> wrote:

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

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

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[Guest guest]

Hi Alison:

I am curious as to whether Fraser has any other identified medical

issues or conditions. Other than the eating and drinking is he " on

course " so to speak with walking, talking etc.? Just curious as it

sounds to me like his scoliosis might be related to a neuromuscular

disorder which could explain the eating and drinking problems. We are

awaiting muscle biopsy results. We don't have any eating problems per

say--however we do have constipation problems and there is a clear

correlation between her not wanting to eat or drink if she hasn't gone

to the bathroom in a day or so that we can see--maybe take a look at

that and see if it's the same for him and if so a prescription laxative

helps.

E

________________________________

From: infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of scottie039

Sent: Monday, February 19, 2007 5:18 AM

infantile scoliosis treatment

Subject: New Member

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

[Guest guest]

I really hate that you're not getting the help for your little guy that you

need=(

Have you spoken w/ ('s mom). You can go to

www.infantilescoliosis.org and read his story and get her email.

Have you ordered " A new Direction " , the DVD on ISOP's website?If you had that

DVD, then you could present it at your next ortho's appointment and inquire

about early treatment.

I'd arm myself w/all the knowledge I could and here and on ISOP's website,

you'll be able to find plenty.

Evan is now 18 months old and has responded so wonderfully to early treatment

and his POP jackets!

Good luck and kepe us posted.

Alison <gaz_ali@...> wrote:

Hi ,

Would you believe nothing is happening with Fraser, the first ortho I

saw wanted to leave it 12 months and that was fine as at this stage it

was on about 15 degrees,but within a few months it was at 30 degrees and

no-one would take responsibility and I just kept getting told leave it

and see and for someone that knew nothing about scoliosis I more or less

did that as he has other health issues that I am dealing with too, but

then I decided someone had to do something so I moved states (I

currently live in Australia) to see better medical attention and as soon

as I moved Fraser ended up being admitted to the hospital for his eating

problems and they did some more investigation in to his scoliosis, they

did another MRI and more xrays and everyone said he had a bad case but

no-one seemed to know what to do, they don't deal with many cases of

infantile scoliosis over here it seems and I haven't met an ortho yet

that has dealt with any. The last ortho I saw last week told me it

wasn't that bad and could be worse and what did I want him to do -

needless to say it wasn't what I wanted to hear, left in tears and found

this website and since have spoken to some Australian members who have

put me in touch with an ortho from another state and trying to get an

appointment with him to see if he will help me. As I said is has been

an uphill battle which really is still going on and it breaks my heart

every day to see Fraser getting worse and no-one doing anything about.

It certainly sounds like Evan is doing well, how old is he now?

Alison

Re: New Member

Hi Alison, I don't have the experience with the feeding issues, so I may

not be much help. I " m sure there is another MOM who may have dealt with

this that will chime in soon!

My question is, what are you doing for Fraser's treatment?

It seems to me that he has a pretty large curvature and is 18 m old and

if you've been on a " journey " for 12m now, hopefully you've achieved

some correction?

It's good to " meet " you and I sure hope you get the answers you were

looking for.

My son, Evan, was diagnosed at 3m old and when he went into his first

cast was at 46 degrees and now in his seventh cast is at 11.

Good luck.

and Evan

scottie039 <gaz_alibigpond (DOT) <mailto:gaz_ali%40bigpond.net.au> net.au>

wrote:

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

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