New member

[Guest guest]

> Hello everyone, I was so happy to find this list, I signed up this

week

> and have really enjoyed reading the posts.

> I would read the tae-bo message board every couple weeks but it took

> forever to download and I was always sorting through old posts.

Phyl,

First of all, welcome to the group. The people here are really

supportive and provide an excellent source of inspiration and

motivation. I like the instant feedback as opposed to having to wait

for messages to appear on the boards.

> Who is Tae-Bo Queen? Is she in the tapes?

Taebo Queen is a lady who started the tapes when they first came out

and has gone from a size 18 to a size 2. She is actually the Producer

of the Infomercial's daughter...or at least that is what I was told by

someone at the tapings. On the main taebo board there is a section

that alot of people post to called " Question for taeboqueen " .

Actually, several of us from this group post there...that's actually

where I found out about this group. Anyway, she's had great success

with taebo and has shared her journey with us. She has a website of

her own, but I can't remember it off the top of my head. Let me know

if you want it and I'll get it for you, or I'm sure someone else knows

it. She is in BL1, BL4 and AL4. See my post to about that.

> I have the original tapes and live basic and advanced through 4. Is

Vol

> 5 out yet?

> I love the variety.

I love the variety, too. I never get bored because I'm not doing the

same tape over and over again. Plus, I look forward each month to

getting a new tape. It helps renew my excitement each month.

Well, again Welcome to the group. Glad you joined us!

[Guest guest]

Hi , I'm am Finicia and I have had Still's for 4 years. I developed

this disease my sophmore year of college and yes I was healthy also. Just

out of no where it came and came hard. I was under stress in school with

some courses and have found out through this site and drs. that stress plays

a major role with the disease and who knows what else. My history is on the

Stills web site if you would like to read it and it tells what all happened

to me. All the conditions you have mention happened to me including I was

barely able to walk. Was healthy on Friday evening when I came home from

school and by Sunday I wasn't able to walk. The medications take awhile to

figure out what works for you. I guess it took a yr. to get me stable but I

got there and am still on alot of meds. but am off of predisone. If you

would like to talk just e-mail me. I know what you are going through and may

God be with you. It is terrible but there is light at the end of the tunnel

so just hold on to yourself. It will work out to where he will probably

reach a point of comfort and function pretty well so don't give up. My

thoughts and prayers are with you!

new member

> Hi, I'm My husband Jim is diagnosed with stills.He has been

> under Drs. care since January.He has had every test thereis and they

> have called it aosd. He has been on many medications. Prednisones

> celebrex ,vioxx, arava.He was on 40mg.of prednisone and is now taking

> 20mg. a day and for the past 4 months hes been on arthotec, folic

> acid, methotexrate and the tylonel for the fevers. Nothing seems to

> be working and he has more flareups than ever. The fevers run closer

> together usually 2-3 times a week.Now they want to start him on

> Embrol and take him of the metotexrate injections. I am frantic not

> knowing how to help him. He is not getting any relief and went on

> sick leave today.I've been reading the posts and am so thankful to

> find this cite and hope to find some answers. He had never had any

> symptoms when he was younger and had been pretty healthy most of the

> time. He is now 54. We tragically lost our 21 year old son to a

> heinous murder 2 years ago. He was a victim of carjacking as he was

> selling his car to perspective buyers.I feel he has been stricken

> with this disease because of his grief. I am besides myself and need

> educated to help him through this and also would like to know more

> about the Embrol and if it is helping the flareups. Thankyou all so

> much. Oh, I am not real adept yet on the computer. It took me awhile

> to get here but I did it.I think. I tried the chat rooms but it

> didn't work for me and I found the message board. So I'm glad to be

> here . My prayers are being answered. God Bless all of you.p.s. I

> wish none of us had to be here .

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

Hi and Jim, this site will be a great help to you. I have

learned more here than from my doctors, books, and other resources. I am

very sorry concerning your son. You are right though that stress is a

real agitator. We care about you and hope to hear more from you,

Louise.

TKCech@... wrote:

>

> Hi, I'm My husband Jim is diagnosed with stills.He has been

> under Drs. care since January.He has had every test thereis and they

> have called it aosd. He has been on many medications. Prednisones

> celebrex ,vioxx, arava.He was on 40mg.of prednisone and is now taking

> 20mg. a day and for the past 4 months hes been on arthotec, folic

> acid, methotexrate and the tylonel for the fevers. Nothing seems to

> be working and he has more flareups than ever. The fevers run closer

> together usually 2-3 times a week.Now they want to start him on

> Embrol and take him of the metotexrate injections. I am frantic not

> knowing how to help him. He is not getting any relief and went on

> sick leave today.I've been reading the posts and am so thankful to

> find this cite and hope to find some answers. He had never had any

> symptoms when he was younger and had been pretty healthy most of the

> time. He is now 54. We tragically lost our 21 year old son to a

> heinous murder 2 years ago. He was a victim of carjacking as he was

> selling his car to perspective buyers.I feel he has been stricken

> with this disease because of his grief. I am besides myself and need

> educated to help him through this and also would like to know more

> about the Embrol and if it is helping the flareups. Thankyou all so

> much. Oh, I am not real adept yet on the computer. It took me awhile

> to get here but I did it.I think. I tried the chat rooms but it

> didn't work for me and I found the message board. So I'm glad to be

> here . My prayers are being answered. God Bless all of you.p.s. I

> wish none of us had to be here .

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

Oh - I wish none of us had to be here either....but we are, and I

hope and pray (I KNOW!) that this group will bring something good and

helpful to you and Jim. Everyone here will help as much as they can...it is

a WONDERFUL group. I joined about 6 months ago and read every day, I don't

post much because I'm currently in remission and feel I cannot offer much

but my thoughts and prayers are with you and Jim. I also offer my sympathy

to the loss of your son....how very sad.

This disease can be brought on by stress and emotion (grief)...I know mine

was.

Please know that I'm thinking only good thoughts and prayers for you and Jim

tonight.

Janet

new member

> Hi, I'm My husband Jim is diagnosed with stills.He has been

> under Drs. care since January.He has had every test thereis and they

> have called it aosd. He has been on many medications. Prednisones

> celebrex ,vioxx, arava.He was on 40mg.of prednisone and is now taking

> 20mg. a day and for the past 4 months hes been on arthotec, folic

> acid, methotexrate and the tylonel for the fevers. Nothing seems to

> be working and he has more flareups than ever. The fevers run closer

> together usually 2-3 times a week.Now they want to start him on

> Embrol and take him of the metotexrate injections. I am frantic not

> knowing how to help him. He is not getting any relief and went on

> sick leave today.I've been reading the posts and am so thankful to

> find this cite and hope to find some answers. He had never had any

> symptoms when he was younger and had been pretty healthy most of the

> time. He is now 54. We tragically lost our 21 year old son to a

> heinous murder 2 years ago. He was a victim of carjacking as he was

> selling his car to perspective buyers.I feel he has been stricken

> with this disease because of his grief. I am besides myself and need

> educated to help him through this and also would like to know more

> about the Embrol and if it is helping the flareups. Thankyou all so

> much. Oh, I am not real adept yet on the computer. It took me awhile

> to get here but I did it.I think. I tried the chat rooms but it

> didn't work for me and I found the message board. So I'm glad to be

> here . My prayers are being answered. God Bless all of you.p.s. I

> wish none of us had to be here .

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

hello and welcome and Jim;

sorry that you have a need for us but glad you have come at the same

time .

it sounds like you both could use some grief concealing as stress

can also make the dragon (still's ) worse if you read here and at the

main sight you will get lots of info We look forward to hearing from you

two also keep a day log on Jim on how he feels ,fevers, eating ect,

start know as when you see your doctors the info should help the doctors

to help you two for now slow down and take each day as it comes but

enjoy the pain free ones the most

in our prayers and thoughts

Marty G.

[Guest guest]

Welcome to the group. I hope you will find what you are looking for here. I

have. I have received, lots of support, compassion and information.

I have been on Embrel for awhile now. I would say it is probably the best

med I have been on. I have been on so many different meds. I think it took

about 2 months before I started feeling better with the Embrel. I hope this

will help your husband as much as it has helped me.

You both are in my thoughts and prayers.

Love,

jatw@...

new member

> Hi, I'm My husband Jim is diagnosed with stills.He has been

> under Drs. care since January.He has had every test thereis and they

> have called it aosd. He has been on many medications. Prednisones

> celebrex ,vioxx, arava.He was on 40mg.of prednisone and is now taking

> 20mg. a day and for the past 4 months hes been on arthotec, folic

> acid, methotexrate and the tylonel for the fevers. Nothing seems to

> be working and he has more flareups than ever. The fevers run closer

> together usually 2-3 times a week.Now they want to start him on

> Embrol and take him of the metotexrate injections. I am frantic not

> knowing how to help him. He is not getting any relief and went on

> sick leave today.I've been reading the posts and am so thankful to

> find this cite and hope to find some answers. He had never had any

> symptoms when he was younger and had been pretty healthy most of the

> time. He is now 54. We tragically lost our 21 year old son to a

> heinous murder 2 years ago. He was a victim of carjacking as he was

> selling his car to perspective buyers.I feel he has been stricken

> with this disease because of his grief. I am besides myself and need

> educated to help him through this and also would like to know more

> about the Embrol and if it is helping the flareups. Thankyou all so

> much. Oh, I am not real adept yet on the computer. It took me awhile

> to get here but I did it.I think. I tried the chat rooms but it

> didn't work for me and I found the message board. So I'm glad to be

> here . My prayers are being answered. God Bless all of you.p.s. I

> wish none of us had to be here .

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

Hi I am hannah Harding My son is 4yrs old he has congential scoliosis and also

has hemi vertebraes the curve is at 65 degrees. we have been to six different

doctors and all are suggesting different treatments. HELP!!! He is only the size

of a 2 1/2 yr old child. he has a twin who is normal but our needs to

find what treatment is best for him whether it be fusion, veptra or just wait

until he puts weight on he is only 26 pounds.

[Guest guest]

>Hi Hannah,

I'm new to this site too. My son is 5yrs old and weighs 29 pounds. His curve

has progressed

to 73 degrees cobb angle. I'm pretty sure he has idiopathic scoliosis, but

maybe someone

can give me the definition of idiopathic and congential?

We are looking for help too. This site has been very informative and I've only

been on it a

few days! We're in upstate NY and will be going to Children's Hospital in

Boston for a 2nd

opinion. Our ortho surgeon suggested we educate ourselves as much as possible,

and I must

say this site is doing just that! Thanks to all.

Blessings,

> Hi I am hannah Harding My son is 4yrs old he has congential scoliosis and also

has hemi

vertebraes the curve is at 65 degrees. we have been to six different doctors and

all are

suggesting different treatments. HELP!!! He is only the size of a 2 1/2 yr old

child. he has a

twin who is normal but our needs to find what treatment is best for him

whether it be

fusion, veptra or just wait until he puts weight on he is only 26 pounds.

>

[Guest guest]

Hannah,

I am so sorry for what you are going through... Unfortunately, it is very difficult to get consesus on this issue in the medical community. I suggest that you send your child's medical records and x-rays to several of our Mehta docs listed on our website. Call each one that you send to first and begin a dialogue with the care coordinator. Mehta docs will normally review the info. that is sent to them and give their thoughts by phone before having you travel to meet them. They may tell you to try casting or that surgery or other therapies are needed. Perhaps if you get several docs on the same page, your choices on how to proceed will be clearer and a little easier for you to make. I got 4 opinions before I started casting my daughter and I felt much better after I got 2 docs to agree that casting would be the best place to start.... Hope this helps and good luck to you,

Steph

Subject: New memberTo: infantile_scoliosis Date: Wednesday, December 31, 2008, 1:18 AM

Hi I am hannah Harding My son is 4yrs old he has congential scoliosis and also has hemi vertebraes the curve is at 65 degrees. we have been to six different doctors and all are suggesting different treatments. HELP!!! He is only the size of a 2 1/2 yr old child. he has a twin who is normal but our needs to find what treatment is best for him whether it be fusion, veptra or just wait until he puts weight on he is only 26 pounds.

[Guest guest]

Hi Hannah,Welcome to the list. My son was also born with congenital scoliosis (he is 13yrs old now). While this is a great place for support, you may also want to check out the Congenital Scoliosis Support list on Yahoo. The link to the list is: http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/I totally understand the frustration and worry you have hearing multiple recommendations. The families on the Congenital Scoli list have all been in similar shoes (as many here, too). Because medical technology has made great advances in treatment for kids like ours, it makes it that much harder to make a decision. Back 20+ years ago, the ONLY choices were wait and do nothing, or fuse the spine. Made our job as decision makers that much easier. Now, there are multiple options. No

ONE option is the right for everyone. Each child is very different. Knowing which option is the right one, at the right time, is very difficult without lots of learning, information seeking, etc. My best to you. CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Hi Heidi,

I was told last week by a parent that the Shriners

are no longer accepting foreign patients. I do not know if this is true, because

2 days after I received this info, I referred a patient in need from Mexico to a Shriners Hospital.. I’ll see what I can do to find out if they are still treating

patients from overseas….

As far as Europe is concerned……Paris would probably be the best place to receive a properly applied series of EDF plaster

jackets on the correct frame. France is where EDF originated. Although,

I am not sure if they are applying jackets to infants yet. I’ll find

out.

HRH

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On

Behalf Of NIck Guthe

Sent: Thursday, February 26, 2009

9:34 AM

To:

infantile_scoliosis

Subject: Re:

New member

Dear Tejal and everyone in the group,

Does anyone know if someone from India can be treated in the U.S. for this? Would Europe be better for her?

I am new to the group, too, Tejal, and my 20 month

old son was just cast at Shriner's in Salt Lake City, Utah last week. We feel

very lucky that he's getting this treatment, his curve was at 64 last week.

My heart goes out to you and your baby.

This sounds like a tough situation. I don't know how

many people are in this group, and I realize travel for Tejal and

her child would be costly and require many trips. Does anyone have any

ideas? We'd certainly be willing to do anything we can. Our family can't

personally afford to send a doctor to her, I wish we could, but we could

" chip in " something. If many other people would be willing to help,

it could add up. Does anyone have any thoughts or ideas?

Meanwhile, we will pray for your son, Shashwat, and

we're sending you lots of support and good wishes for the best outcome.

Heidi (Mother of Bexon Guthe, in 1st cast)

From: tejal_makwana

<tejal_makwana>

Subject: New member

To: infantile_scoliosis

Date: Thursday, February 26, 2009, 2:55 AM

Hello to everyone

I am new to this group

Myself Tejal from Hyderabad, India.

my son shashwat who is 3 and half year old has growing infantile

scoliosis. Right now the curve is severe (80 degree with RVAD 35)

we found he had scoliosis at the age when he was 1 and half year old.

we consult a spine surgeon here in india who recommend a ortho brace

and told us to wait and watch.

Shashwat started walking at the age of three. he had a low muscle tone.

We have done genetic, nuero muscular, MRI and other tests but all

tests are normal.

In our last appoinment with the spine specialist he recommend my son

an ortho brace and if it will not maintain the curve properly than we

have to go for growing rode surgery.

after hearing all this i searched the internet and luckily i found

ISOP and CAST group. it gives me very helpful information

As a mother i dont want to let my sweet lil son to go for surgery,

we are hoping if the ortho brace can maintain the curve (spine curve

of my son is flexible upto 50% ....it reduce to 40 degree in Xray with

traction)

If this brace not work then we decided to go for Dr. Mehta EDF serial

casting method....But the problem is that here in India no facilities

for this Dr.mehta method

I m trying to do my best to find someone here in India who can help my

child to fight with his scoliosis using Dr Mehta method.

I request all of you if you can help me in this matter ( Have any info

that can help to Make possible Dr. Mehta method in India)

It will be a miracle for us if my son get this treatment here in India.

Please pray for my son that he will not have to go for surgery.

Hoping for the best....

Tejal (Mom of Shashwat)

[Guest guest]

Hi ,

Thank you. I know this is not what you are even thinking about- but since we all

know how the economy is in America right now, I wanted to clarify my earlier

email post. I would never personally send a check to anyone based on an internet

connection only (nor would I expect anyone else to!). Too many smart and kind

people have been scammed that way, as we all know. In no way do I intend to

offend this beautiful mother and her precious child, as I believe they are 100

percent honest.

Through the foundation is obviously the best way to help-- but if a lot of

people pulling on the same string could help her situation (in our own small

way), please let us know.

Thank you!

-Heidi (Mother of Bexon Guthe)

>

>

> Subject: New member

> To: infantile_scoliosis

> Date: Thursday, February 26, 2009, 2:55 AM

>

> Hello to everyone

>

> I am new to this group

>

> Myself Tejal from Hyderabad, India.

>

> my son shashwat who is 3 and half year old has growing

> infantile

> scoliosis. Right now the curve is severe (80 degree with

> RVAD 35)

>

> we found he had scoliosis at the age when he was 1 and half

> year old.

> we consult a spine surgeon here in india who recommend a

> ortho brace

> and told us to wait and watch.

>

> Shashwat started walking at the age of three. he had a low

> muscle tone.

>

> We have done genetic, nuero muscular, MRI and other tests

> but all

> tests are normal.

>

> In our last appoinment with the spine specialist he

> recommend my son

> an ortho brace and if it will not maintain the curve

> properly than we

> have to go for growing rode surgery.

>

> after hearing all this i searched the internet and luckily

> i found

> ISOP and CAST group. it gives me very helpful information

>

> As a mother i dont want to let my sweet lil son to go for

> surgery,

> we are hoping if the ortho brace can maintain the curve

> (spine curve

> of my son is flexible upto 50% ....it reduce to 40 degree

> in Xray with

> traction)

>

> If this brace not work then we decided to go for Dr. Mehta

> EDF serial

> casting method....But the problem is that here in India no

> facilities

> for this Dr.mehta method

>

> I m trying to do my best to find someone here in India who

> can help my

> child to fight with his scoliosis using Dr Mehta method.

>

> I request all of you if you can help me in this matter (

> Have any info

> that can help to Make possible Dr. Mehta method in India)

>

> It will be a miracle for us if my son get this treatment

> here in India.

>

> Please pray for my son that he will not have to go for

> surgery.

>

> Hoping for the best....

>

> Tejal (Mom of Shashwat)

[Guest guest]

Hi Jen,

God bless you and all single mothers! (And mothers/parents in general...the hardest job EVER.)

Your baby will adust quickly. Some things will be fast, some will take more time, don't worry, he'll get back to pretty much 100 percent normal. The Poise pads inside the diaper are a great tip, we buy the store brand and stick it in so it hangs past the diaper- then tuck it into the diaper front.

I can't imagine washing the inner sweater without 2 people- one to hold the child still while the other washes and blows it dry with a hair dryer! Yikes.

There are posts on hair washing and bathing you can search on this group site in past emails, please ask any and all questions! We are all here for you! I like calendula cream around the cast for areas that rub- I use Weleda baby brand from Whole foods or online- we use water resistant bibs called Bumpkins from babiesrus- to avoid milk/juice spills.

We even put a pull-up diaper over the regular diaper. As you can see, we are desperately trying to avoid any pee drops on the sweater or cast! Have you put some duct tape ont the bottom of the cast, to semi-waterproof it yet?

Cetaphil cleanser or the drugstore brand of this is a good, gentle cleanser for babies' skin for a wipe up after a number 2, if you don't have time for a whole sponge bath. I put it directly on the unscented wipes. Oh, and welcome to the group!

-Heidi (Bexon's Mama, 22 months old, in first cast from SLC)

Subject: New MemberTo: infantile_scoliosis Date: Wednesday, April 15, 2009, 8:54 AM

Just joined this group after my son Jake was casted for the 1st time at Shriners in Chicago yesterday. He is 19 months old and was diagnosed 3 weeks ago with a 48 degree curve. The Dr showed me his x-rays after the procedure & he went to 6 degrees. Last night was rough as he cant seem to find a comfortable position for sleeping and he seems to get frustrated with the limited movement. Any ideas, information, thoughts, or help would be greatly appreciated. I am a single mom and anything that would make this a little easier would be wonderful. God Bless all of you and your children.JenLoves Park, IL

[Guest guest]

Jen

Welcome to the group. My daughter, who is 2 1/2, was just casted for the first time in Chicago 5 weeks ago. She started with a 49 degree curve and 19 degrees in cast. It really took her about 2 weeks before she started sleeping thru the night. I felt like I had a newborn again(especially when you are used to sleeping). For the first two weeks, she had a really tough time sleeping, sitting, playing etc. But, just hang in there, I promise that time does make it better for them and you.

Take Care

Subject: New MemberTo: infantile_scoliosis Date: Wednesday, April 15, 2009, 11:54 AM

Just joined this group after my son Jake was casted for the 1st time at Shriners in Chicago yesterday. He is 19 months old and was diagnosed 3 weeks ago with a 48 degree curve. The Dr showed me his x-rays after the procedure & he went to 6 degrees. Last night was rough as he cant seem to find a comfortable position for sleeping and he seems to get frustrated with the limited movement. Any ideas, information, thoughts, or help would be greatly appreciated. I am a single mom and anything that would make this a little easier would be wonderful. God Bless all of you and your children.JenLoves Park, IL