Newly diagnosed

[Guest guest]

Hello Gwenan

Welcome to the group. I was misdiagnosed as having asthma for

several years. Just before we finally got it right I felt as though

I were drowning from what I now know was aspiration. My Heller

Myotomy in December of 2005 has changed my life. That doesn't mean I

don't have difficult moments. Stress intensifies my difficulties,

and at the moment I am very careful. There are several members in

your part of the world, and I expect that you will have responses

from them soon. Again, welcome.

Jo in Southwest Michigan

>

> hello

>

> I was newly diagnosed as having achalasia a few days ago- though

it had

> got to the stage that if it wasn't ahcalasia i'd be all out of

options.

> Anyway- I don't know what procedure i'm going to have- i'm seeing

the

> consultant in a fortnight. And if I'm honest I don't care- as long

as I

> get some relief and don't throw up all the time any more I'll be

happy.

> I live in London, UK- and am lucky to live around the corner from

my

> hospital.

> Anyway- I'm interested to hear if anybody was mis-diagnosed in the

past

> before being told they had achalasia- as I was told for over 6

months

> by two different doctors it was anxiety/depression/ulcers (you

can't

> imagine the kind of anxiety/paranoia and guilt this lead to)

before

> changing dr's again and finally being put on the right track. It's

nice

> to know it's not all in my head. And finding various webistes and

> messgaeboards has helped in many ways- it's helped me to realise

that

> it isn't just going to go away for the rest of my life but that

i'm not

> completely alone and it is copeable....

> thanks

> Gwenan

>

[Guest guest]

Hi Gwenan, Welcome to the group! I have only recently become a member of this group myself and it helps me so much coping with everything (eventhough I have my achalasia for over 15 years now). I understand too well how good it feels to have certainty that you are not crazy, that your problems are real and that it is not all in your head. I rather know what's going on, than being uncertain about all that. You are absolutely not the only one being misdiagnosed, I am sure there are so many patients misdiagnosed. Achalasia is not the easiest thing to diagnose. They told me I had bulimia (I was in my late teens at that time, so it was the logic explanation for everything, according to the doctors). It took several years to get the correct diagnose. Don't decide too quickly on which doctor should treat you. Find yourself an experienced

doctor, this board might help you finding one. I can imagine you wanting relief quickly, but quick treatment is not always the best treatment. Keep that in mind and read some posts here on the board. As soon as you have read some of them, you will understand the importance of finding the best possible doctor/surgeon!!! Good luck! Isabellagwenaned <gwenaned@...> wrote: helloI was newly diagnosed as having achalasia a few days ago- though it had got to the

stage that if it wasn't ahcalasia i'd be all out of options. Anyway- I don't know what procedure i'm going to have- i'm seeing the consultant in a fortnight. And if I'm honest I don't care- as long as I get some relief and don't throw up all the time any more I'll be happy. I live in London, UK- and am lucky to live around the corner from my hospital.Anyway- I'm interested to hear if anybody was mis-diagnosed in the past before being told they had achalasia- as I was told for over 6 months by two different doctors it was anxiety/depression/ulcers (you can't imagine the kind of anxiety/paranoia and guilt this lead to) before changing dr's again and finally being put on the right track. It's nice to know it's not all in my head. And finding various webistes and messgaeboards has helped in many ways- it's helped me to realise that it isn't just going to go away for the rest of my life but that i'm not completely

alone and it is copeable....thanksGwenan

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[Guest guest]

Welcome to you Gwenan, We all know what you mean about no longer feeling alone. Because this is a rare condition, it is unlikely that you would have ever met anyone else with it and that makes it hard for you and others to understand. It seems quite common for people with achalasia to be given the wrong diagnosis for a long time time before the correct one. Do not hold this against your Doctors. For most this was a footnote at the end of the chapter on gastric disorders and many are unfamiliar with it. We are here for you to talk about pretty much anything you want to ask or discuss and will do our best

to help you. There are members from several countries in this Group. The biggest contingent is from the U.S. I, like you, live in England (West Yorkshire). From Ann.gwenaned <gwenaned@...> wrote: helloI was newly diagnosed as having achalasia a few days ago- though it had got to the stage that if it

wasn't ahcalasia i'd be all out of options. Anyway- I don't know what procedure i'm going to have- i'm seeing the consultant in a fortnight. And if I'm honest I don't care- as long as I get some relief and don't throw up all the time any more I'll be happy. I live in London, UK- and am lucky to live around the corner from my hospital.Anyway- I'm interested to hear if anybody was mis-diagnosed in the past before being told they had achalasia- as I was told for over 6 months by two different doctors it was anxiety/depression/ulcers (you can't imagine the kind of anxiety/paranoia and guilt this lead to) before changing dr's again and finally being put on the right track. It's nice to know it's not all in my head. And finding various webistes and messgaeboards has helped in many ways- it's helped me to realise that it isn't just going to go away for the rest of my life but that i'm not completely alone and it is

copeable....thanksGwenan

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[Guest guest]

Hi, Gwenan, A lot of us were misdiagnosed before we finally arrived at the Achalasian Club. My internist told me that I probably had something called Benign Cyclical Vomiting. (Hooey!) I told one of my girlfriends this and she replied that human beings don't have this problem but that cats do. I should say! Then I was told it was probably GURD/GERD....I have had ulcers in the past but I do know the difference. I was told I was too tense, I was overweight (true enough...but I was losing weight, and enjoying THAT aspect, actually), I probably had allergies, food allergies (yes, I know I do and which ones, too), and so forth. I started looking around on the internet for my symptoms and I evenutally got to this site and these fine people. I

was NOT vomiting; I WAS REGURGITATING. Food and Drink was sticking, not going all the way into my stomach, causing nausea and then, making me barf. It was sticking at various places in my throat and then I'd feel a sort of blockage, pain, spasms, and a few times, when I tried to shove food or drink down by drinking water or soda, BANG! within one to two seconds, OUT ! through my nostrils, my mouth.....even liquid would come out of my tear ducts. So attractive! (not) It does not help that few people out there, including doctors, know how to diagnose this problem of ours, but perseverance helps enormously. We are not nuts; we've got Achalasia. Welcome to this good group of people. Hope you find some relief and support and good medical help. All best, Deborah

[Guest guest]

Welcome to the group.

At your appointment find out her degree of curvature and her RVAD. An RVAD of

20 or higher is considered progressive. Most parents request an MRI to rule out

any congenital or neurological causes for the scoliosis. If Mila's scoliosis is

deemed non-structural, or non-congenital (orthos usually say idiopathic-no known

cause) then Early Treatment with serial corrective plaster casts may be a

non-surgical option for her. The Early Treatment philosophy is to harness the

infant's rapid growth between 0-2 yrs of age to train the spine to grow

straight. You can find info on Early Treatment at www.infantilescoliosis.org.

The Stories section is full of parents personal accounts of the Early Treatment

process. The Info section has tips on diapering, and also a link to request the

DVD " A New Direction " which explains Dr. Min Mehta's philosophy and technique in

detail.

The parents on this group are wonderful. Please feel free to ask any

questions.

Shellie Grant (Moriah's Mom--congential scoliosis, congenital heart defect.

pine12944 wrote:

Hello all.

My daughter Mila is 5 months old. For the last few months I noticed

that her head was turned most of the time. As she has gotten a little

older, I noticed that her left shoulder is higher than her right. I

told her pediatrician (whom I love) and x rays were ordered. The MD

thought it was tortcollis. Guess what...scoliosis. I found my way to

this site, which is great. Mila has an appointment this Wed, April 4 in

Burlington, VT with a pediatric ortho surgeon. I live in upstate rural

NY. I have already started her medical portfolio, including front and

back photos. I am a little nervous, because I believe that her curve

has already progressed a lot in the last few months. She also has a

left thoracic curve, which is atypical. I do not know her " degrees "

yet, but will on Wednesday. She is my third (and last) child. My only

saving grace is that I am a nurse, so the medical world is second

nature to me. If anybody has any advice for my MD appointment or just

comments in general, I would appreciate them!

Thanks, Kezia

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

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

[Guest guest]

Just arm yourself w/ everything you can about early treatment and early

intervention! Read www.infantilescoliosis.org and order the DVD... that will

help answer so many questions. It really helped us out when we were so new to

this!

You are Mila's advocate in this and you will demand to get her the best care

possible!

Have you considered being seen at Shriner's in Erie, PA?

I guess the key is to first find out her COBB and RVAD and have an MRI done to

rule out any abnormalities.... You're in the right time for Mila- she's growing

so rapidly so growth can be used as a corrective force and you caught it early.

Way to go!

Keep us posted. Feel free to email me privately: jvsd@.... My son

Evan was diagnosed at 3m old and he's now " graduated " to a brace b/c his

curvature is down to 8 degrees!

Take care.

and Evan -19m

pine12944 wrote:

Hello all.

My daughter Mila is 5 months old. For the last few months I noticed

that her head was turned most of the time. As she has gotten a little

older, I noticed that her left shoulder is higher than her right. I

told her pediatrician (whom I love) and x rays were ordered. The MD

thought it was tortcollis. Guess what...scoliosis. I found my way to

this site, which is great. Mila has an appointment this Wed, April 4 in

Burlington, VT with a pediatric ortho surgeon. I live in upstate rural

NY. I have already started her medical portfolio, including front and

back photos. I am a little nervous, because I believe that her curve

has already progressed a lot in the last few months. She also has a

left thoracic curve, which is atypical. I do not know her " degrees "

yet, but will on Wednesday. She is my third (and last) child. My only

saving grace is that I am a nurse, so the medical world is second

nature to me. If anybody has any advice for my MD appointment or just

comments in general, I would appreciate them!

Thanks, Kezia

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

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[Guest guest]

I also forgot to ask you if she has had her MRI yet? That will determine your

course of treatment once you know if she is idiopathic or congenital.

Noelle (12-2-01)

Ian (8-15-04)

newly diagnosed

Hello all.

My daughter Mila is 5 months old. For the last few months I noticed

that her head was turned most of the time. As she has gotten a little

older, I noticed that her left shoulder is higher than her right. I

told her pediatrician (whom I love) and x rays were ordered. The MD

thought it was tortcollis. Guess what...scoliosis. I found my way to

this site, which is great. Mila has an appointment this Wed, April 4 in

Burlington, VT with a pediatric ortho surgeon. I live in upstate rural

NY. I have already started her medical portfolio, including front and

back photos. I am a little nervous, because I believe that her curve

has already progressed a lot in the last few months. She also has a

left thoracic curve, which is atypical. I do not know her " degrees "

yet, but will on Wednesday. She is my third (and last) child. My only

saving grace is that I am a nurse, so the medical world is second

nature to me. If anybody has any advice for my MD appointment or just

comments in general, I would appreciate them!

Thanks, Kezia

[Guest guest]

Shellie and gave you some excellent advice already. I agree that it would

be worth looking in to the early treatment with serial casting for your

daughter. She's at such a young age that she would probably have fantastic

results in a really short time if she is a candidate for the treatment. Erie is

the place closest to you that does the casting. Shriners is free of course.

Also, are you sure she doesn't have the torticollis in addition to the

scoliosis? They often go hand in hand with each other.

If you would like to read my son's story, here it is:

http://www.infantilescoliosis.org/ians_story.htm

Also, the Shriners magazine did an article on Ian as well (page 10):

http://www.shrinershq.org/files/shrine/PDF/SONA_Between_Us_12-06.pdf

Noelle (12-2-01)

Ian (8-15-04)

newly diagnosed

Hello all.

My daughter Mila is 5 months old. For the last few months I noticed

that her head was turned most of the time. As she has gotten a little

older, I noticed that her left shoulder is higher than her right. I

told her pediatrician (whom I love) and x rays were ordered. The MD

thought it was tortcollis. Guess what...scoliosis. I found my way to

this site, which is great. Mila has an appointment this Wed, April 4 in

Burlington, VT with a pediatric ortho surgeon. I live in upstate rural

NY. I have already started her medical portfolio, including front and

back photos. I am a little nervous, because I believe that her curve

has already progressed a lot in the last few months. She also has a

left thoracic curve, which is atypical. I do not know her " degrees "

yet, but will on Wednesday. She is my third (and last) child. My only

saving grace is that I am a nurse, so the medical world is second

nature to me. If anybody has any advice for my MD appointment or just

comments in general, I would appreciate them!

Thanks, Kezia

[Guest guest]

My biggest advice is go with what you feel is right for your child.

Max was diagnosed at 5 months. But with our lack of knowledge about

casting and the orthopedic doctors in WI not accepting/supporting

casting as a treatment option we accepted bracing as a treatment

method before surgery. Despite wearing the brace for 3 months for 20

hours/day, Max's curve doubled! Surgery was our next treatment

option. I didn't feel right about surgery and neither did our

pediatrician. Although I did all the leg work in finding Shriners-

Chicago who recommended casting over surgery, I jumped at the

chance. Although a 5 1/2 hour drive each way, it is well worth our

trips! If we did not have the support of Max's pediatrician and the

great doctors and staff at Shriners, Max could've had growing rod

surgery 8 months ago.

My biggest advice is don't settle, options are available, sometimes

you have to do the research yourself.

Max had an MRI also.

Please keep us posted! Good Luck.

Aekta (mother of Max: 20 months)

>

> Shellie and gave you some excellent advice already. I agree

that it would be worth looking in to the early treatment with serial

casting for your daughter. She's at such a young age that she would

probably have fantastic results in a really short time if she is a

candidate for the treatment. Erie is the place closest to you that

does the casting. Shriners is free of course.

>

> Also, are you sure she doesn't have the torticollis in addition to

the scoliosis? They often go hand in hand with each other.

>

> If you would like to read my son's story, here it is:

>

> http://www.infantilescoliosis.org/ians_story.htm

>

> Also, the Shriners magazine did an article on Ian as well (page

10):

> http://www.shrinershq.org/files/shrine/PDF/SONA_Between_Us_12-

06.pdf

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> newly diagnosed

>

>

> Hello all.

> My daughter Mila is 5 months old. For the last few months I

noticed

> that her head was turned most of the time. As she has gotten a

little

> older, I noticed that her left shoulder is higher than her

right. I

> told her pediatrician (whom I love) and x rays were ordered. The

MD

> thought it was tortcollis. Guess what...scoliosis. I found my

way to

> this site, which is great. Mila has an appointment this Wed,

April 4 in

> Burlington, VT with a pediatric ortho surgeon. I live in upstate

rural

> NY. I have already started her medical portfolio, including

front and

> back photos. I am a little nervous, because I believe that her

curve

> has already progressed a lot in the last few months. She also

has a

> left thoracic curve, which is atypical. I do not know

her " degrees "

> yet, but will on Wednesday. She is my third (and last) child. My

only

> saving grace is that I am a nurse, so the medical world is

second

> nature to me. If anybody has any advice for my MD appointment or

just

> comments in general, I would appreciate them!

> Thanks, Kezia

>

>

>

>

>

>

[Guest guest]

Good Luck Kezia. Be sure to update us when you get back from your appt.

Noelle (12-2-01)

Ian (8-15-04)

newly diagnosed

Good morning all. Thabks for all of the wonderful advice and support.

This morning we begin our journey with our first visit to the Pedi

Ortho in Burlington, VT. As I stated before, I am a nurse. I can tell

by looking at my daughter that it is not going to be a mild case. Her

left shoulder is markedly higher than her right and I can see the shift

in her ribs. Today I will know more (degrees and RVAD. Maybe I am being

overly nervous, but my mother's instinct tells me that I am not. Please

keep your fingers crossed for us.

Thank you, Kezia (Mila's mom 10/17/06)

[Guest guest]

GOOD luck today. You'll be in our prayers...

Let us know how it goes.

and Evan

Kezia wrote:

Good morning all. Thabks for all of the wonderful advice and support.

This morning we begin our journey with our first visit to the Pedi

Ortho in Burlington, VT. As I stated before, I am a nurse. I can tell

by looking at my daughter that it is not going to be a mild case. Her

left shoulder is markedly higher than her right and I can see the shift

in her ribs. Today I will know more (degrees and RVAD. Maybe I am being

overly nervous, but my mother's instinct tells me that I am not. Please

keep your fingers crossed for us.

Thank you, Kezia (Mila's mom 10/17/06)

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

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[Guest guest]

Who are you going to?

We live in Mass off 91 in Sunderland and travel to Boston and Shriners

for casting

Did not catch much of your story but welcome to the group

-

-- In infantile scoliosis treatment , " Kezia "

wrote:

>

> Good morning all. Thabks for all of the wonderful advice and support.

> This morning we begin our journey with our first visit to the Pedi

> Ortho in Burlington, VT. As I stated before, I am a nurse. I can tell

> by looking at my daughter that it is not going to be a mild case. Her

> left shoulder is markedly higher than her right and I can see the

shift

> in her ribs. Today I will know more (degrees and RVAD. Maybe I am

being

> overly nervous, but my mother's instinct tells me that I am not.

Please

> keep your fingers crossed for us.

> Thank you, Kezia (Mila's mom 10/17/06)

>

[Guest guest]

Hi Tina! Welcome to the group. There is another little boy in the San Diego

area who has Infantile scoli. His family travels to the Shriner's in Erie, PA

to get his casts. It seems that they ran into the same set of problems it

sounds like you have already encountered.

I think you are doing the right thing by arming yourself with knowledge, doing

research, joining the group, and reading infantilescoliosis.org in it's

entirety. Have you ordered the DVD yet? It will answer a lot of your questions

about casting and Dr. Min Mehta. I would suggest you read her article in the

files section of the group.

Has had an MRI yet? Hopefully you can get your ped to order the

MRI for you. Sometimes you will also need a renal ultrasound, an eye slit test,

and an echo cardiogram. These tests need to be performed before casting can

begin to rule out a congenital condition or a connective tissue disorder. Do

you know what his curve's COBB angle measurement is? Has his RVAD been

measured? To find definitions to terms you will be becoming familiar with,

visit the website http://www.infantilescoliosis.org/terms.htm .

If you would like to chat, e-mail me privately with your number and a good

time to call. You're already making great decisions. Keep up your strength and

I wish you and your entire family the very best.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

bugman201 wrote:

Hello Everyone,

My name is Tina Doolittle and my son was recently diagnosed

with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

ortho surgeon in San Diego and rapidly discovered that we knew more

about infantile scoliosis than she did. She claimed that Scoliosis

would never resolve and a brace might be needed to prevent the

curvature from worsening. We were not satisfied with the doctor's

diagnosis, so we decided to take matters into our own hands. We are

doing a lot of research and have learned about infantilescoliosis.org

and the treatments involving casting at various Shriners' hospitals.

The nearest facility that offers the casting treatment seems to be in

Salt Lake City. We are in Southern California and would prefer to find

treatment closer. Can anyone recommend any good doctors in

California? If so, please share with us your experience. However, we

will take any advice you can give.

Sincerely,

The Doolittles

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

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[Guest guest]

Hi Tina,

I was appalled to hear that the doctor you saw said that infantile

scoliosis would not resolve. My granddaughter Hayden is 8 mo old

and her scoliosis appears to be resolving. Please look at her

pictures in the picture section.

She has another visit with Dr. Gupta at Shriners in Sacramento this

Thursday. At her last visit in December when she was 5 mo old her

Cobb was 21 and RVAD was 3. When we look at her now her back

appears to be so much straighter than it was when she was 3 weeks to

5 mo old. So we shall see what Dr. Gupta has to say this Thurs.

Actually, from what I read on the internet, most cases of infantile

scoliosis do resolve on their own.....as many as 80% of the cases.

I don't think we hear from many of those moms on boards like this.

We are one of the few on here who have been lucky in this

regard....so far, anyway.

In San Diego there is a Dr. Newton at Children's Hospital who

you could see for a second opinion and get the proper xrays and

diagnosis. He is a specialist in Infantile Scoli and I understand

from my cousin's wife who works with him that he is great. Dr.

Gupta gives him rave reviews also. I don't think he uses the Mehta

method of casting but he would be worth another opinion.

Much good luck with and you are in good hands with the

knowlegeable parents on this board.

Marsha

Citrus Heights, Ca.

Grandmother to Hayden

>

> Hello Everyone,

>

> My name is Tina Doolittle and my son was recently

diagnosed

> with infantile Scoliosis. He is 10 mos. old. We visited a

pediatric

> ortho surgeon in San Diego and rapidly discovered that we knew

more

> about infantile scoliosis than she did. She claimed that

Scoliosis

> would never resolve and a brace might be needed to prevent the

> curvature from worsening. We were not satisfied with the doctor's

> diagnosis, so we decided to take matters into our own hands. We

are

> doing a lot of research and have learned about

infantilescoliosis.org

> and the treatments involving casting at various Shriners'

hospitals.

> The nearest facility that offers the casting treatment seems to be

in

> Salt Lake City. We are in Southern California and would prefer to

find

> treatment closer. Can anyone recommend any good doctors in

> California? If so, please share with us your experience.

However, we

> will take any advice you can give.

>

> Sincerely,

> The Doolittles

>

[Guest guest]

Hi ,

Thank you so much for the input! I'm putting together a list of all the

things I need to do prior to treatment. I did not know about the renal

ultrasound, eye slit test, or the echo cardiogram. I'll make sure to bring them

up when I'm setting up 's appointment. I can't tell you how grateful

I am to be part of this group. I'm getting a lot of great information and I

feel so much better about my son's infantile scoliosis. Feel free to call me at

, I'd love to talk to you! I've already talked to and

Caflin. They are both wonderful people and have helped me

tremendously. is sending me the DVD and I hope to get it in a few days.

She said it would be very helpful to us. She also recommended the article to

read and I plan to look over it tonight with my husband.

My son's COBB angle is 27 degrees. The doctor told us that his curve might be

worse than that since the x-ray was done lying down. Do not know what his RVAD

is. The doctor, believe or not, did not mention anything about it. I

discovered it when I was doing some research on the web. We have an appointment

next Monday to have an MRI done to rule out any neurological issues.

I sure do appreciate all the support! Please call me when you get the chance.

I'm available any time.

Sincerely,

Tina

wrote:

Hi Tina! Welcome to the group. There is another little boy in the San

Diego area who has Infantile scoli. His family travels to the Shriner's in Erie,

PA to get his casts. It seems that they ran into the same set of problems it

sounds like you have already encountered.

I think you are doing the right thing by arming yourself with knowledge, doing

research, joining the group, and reading infantilescoliosis.org in it's

entirety. Have you ordered the DVD yet? It will answer a lot of your questions

about casting and Dr. Min Mehta. I would suggest you read her article in the

files section of the group.

Has had an MRI yet? Hopefully you can get your ped to order the MRI

for you. Sometimes you will also need a renal ultrasound, an eye slit test, and

an echo cardiogram. These tests need to be performed before casting can begin to

rule out a congenital condition or a connective tissue disorder. Do you know

what his curve's COBB angle measurement is? Has his RVAD been measured? To find

definitions to terms you will be becoming familiar with, visit the website

http://www.infantilescoliosis.org/terms.htm .

If you would like to chat, e-mail me privately with your number and a good time

to call. You're already making great decisions. Keep up your strength and I wish

you and your entire family the very best.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

bugman201 wrote:

Hello Everyone,

My name is Tina Doolittle and my son was recently diagnosed

with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

ortho surgeon in San Diego and rapidly discovered that we knew more

about infantile scoliosis than she did. She claimed that Scoliosis

would never resolve and a brace might be needed to prevent the

curvature from worsening. We were not satisfied with the doctor's

diagnosis, so we decided to take matters into our own hands. We are

doing a lot of research and have learned about infantilescoliosis.org

and the treatments involving casting at various Shriners' hospitals.

The nearest facility that offers the casting treatment seems to be in

Salt Lake City. We are in Southern California and would prefer to find

treatment closer. Can anyone recommend any good doctors in

California? If so, please share with us your experience. However, we

will take any advice you can give.

Sincerely,

The Doolittles

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

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

[Guest guest]

Hi Marsha,

Thank you for sharing your granddaughter's story with me. I sure do hope my

son's scoliosis will resolve on its own, but my motherly instincts tell me

otherwise. It really looks bad, but maybe I'm a little too paranoid. Thank you

for the information on Dr. Newton. A friend of ours mentioned him as well, so

we may give him a try. There is a Dr. Kishan at Loma University Medical

Center that uses the Mehta treatment and we're looking to set up an appointment

with him. Caflin from the support group told me he used to work for

Shriner's Hospital in Erie, PA. and does great work. Can't wait to meet him.

I wish your granddaughter all the best. Please keep me posted on her

progress. Sounds like she is going to be one of the lucky ones.

Take Care,

Tina

mlmjra wrote:

Hi Tina,

I was appalled to hear that the doctor you saw said that infantile

scoliosis would not resolve. My granddaughter Hayden is 8 mo old

and her scoliosis appears to be resolving. Please look at her

pictures in the picture section.

She has another visit with Dr. Gupta at Shriners in Sacramento this

Thursday. At her last visit in December when she was 5 mo old her

Cobb was 21 and RVAD was 3. When we look at her now her back

appears to be so much straighter than it was when she was 3 weeks to

5 mo old. So we shall see what Dr. Gupta has to say this Thurs.

Actually, from what I read on the internet, most cases of infantile

scoliosis do resolve on their own.....as many as 80% of the cases.

I don't think we hear from many of those moms on boards like this.

We are one of the few on here who have been lucky in this

regard....so far, anyway.

In San Diego there is a Dr. Newton at Children's Hospital who

you could see for a second opinion and get the proper xrays and

diagnosis. He is a specialist in Infantile Scoli and I understand

from my cousin's wife who works with him that he is great. Dr.

Gupta gives him rave reviews also. I don't think he uses the Mehta

method of casting but he would be worth another opinion.

Much good luck with and you are in good hands with the

knowlegeable parents on this board.

Marsha

Citrus Heights, Ca.

Grandmother to Hayden

>

> Hello Everyone,

>

> My name is Tina Doolittle and my son was recently

diagnosed

> with infantile Scoliosis. He is 10 mos. old. We visited a

pediatric

> ortho surgeon in San Diego and rapidly discovered that we knew

more

> about infantile scoliosis than she did. She claimed that

Scoliosis

> would never resolve and a brace might be needed to prevent the

> curvature from worsening. We were not satisfied with the doctor's

> diagnosis, so we decided to take matters into our own hands. We

are

> doing a lot of research and have learned about

infantilescoliosis.org

> and the treatments involving casting at various Shriners'

hospitals.

> The nearest facility that offers the casting treatment seems to be

in

> Salt Lake City. We are in Southern California and would prefer to

find

> treatment closer. Can anyone recommend any good doctors in

> California? If so, please share with us your experience.

However, we

> will take any advice you can give.

>

> Sincerely,

> The Doolittles

>

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

Bored stiff? Loosen up...

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[Guest guest]

Tina,

Just wanted to welcome you to the group and say that the other ladies

pretty much covered everything. We are new to all of this too. Our

son Matson who is 13 months was diagnosed at 10 months in December.

His COBB is 41 degrees. None of our pediatricians here in Las Vegas

knew how to diagnose nor treat Infantile Scoliosis, the first ortho

specialist we saw said similar to what you were told. That Matson's

scoli would not resolve and we were in for a long haul of braces

until puberty and then surgery.The second ortho we saw was more open

to the idea of casting, but again we were told he did not do it and

that bracing and then surgery was our best bet. Then I found this

board and ISOP and everything changed. We had our consultation in

Salt Lake City at Shriner's. They redid the xrays, examined Matson,

and agreed to treat him and that serial casting was our best option.

He is scheduled for his first cast on April 24th. We are getting his

MRI done this Thursday (we have tried two previous times with

sedative that did not work on him, so this time he will be under

general anesthesia). The staff in SLC is absolutely wonderful, as is

the facility. The DVD is very informative and helpful. and

ISOP are truly amazing, as are all the parents and brave children on

this board.

If you are interested in contacting Shriners in SLC, you can call

them to get your application process started or fax your application

over. They are very efficient and wonderful to work with and all of

their services are at no charge. A simply wonderful organization.

Here is the website address:

http://www.shrinershq.org/Hospitals/Salt_Lake_City/

Also, in SLC they never told us we needed the renal ultrasound, or

eye slit test. Matson had an echo done at birth, but they did not

mention that either. They only required us to have the MRI done at

this point prior to his first cast. If you would like to chat or

email here is addy that I check often

mattnsteph4nier@...

Good luck with everything and keep us posted.

Take care,

Tyler 4 years

Matson 13 months (dx 12/06)

Lily 10 weeks

> Hello Everyone,

>

> My name is Tina Doolittle and my son was recently

diagnosed

> with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

> ortho surgeon in San Diego and rapidly discovered that we knew more

> about infantile scoliosis than she did. She claimed that Scoliosis

> would never resolve and a brace might be needed to prevent the

> curvature from worsening. We were not satisfied with the doctor's

> diagnosis, so we decided to take matters into our own hands. We are

> doing a lot of research and have learned about

infantilescoliosis.org

> and the treatments involving casting at various Shriners'

hospitals.

> The nearest facility that offers the casting treatment seems to be

in

> Salt Lake City. We are in Southern California and would prefer to

find

> treatment closer. Can anyone recommend any good doctors in

> California? If so, please share with us your experience. However,

we

> will take any advice you can give.

>

> Sincerely,

> The Doolittles

>

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

> Don't be flakey. Get Yahoo! Mail for Mobile and

> always stay connected to friends.

>

>

[Guest guest]

Tina,

I forgot to mention that you should ask them to give you an estimate as to how

much rotation he has. While Ian's RVAD numbers were borderline as to whether

he'd progress or not, his rotation was approx. 45 degrees and indicated to Miss

Mehta that he would progress (and she was right about that).

Noelle (12-2-01)

Ian (8-15-04)

Re: Newly Diagnosed

Hi ,

Thank you so much for the input! I'm putting together a list of all the things

I need to do prior to treatment. I did not know about the renal ultrasound, eye

slit test, or the echo cardiogram. I'll make sure to bring them up when I'm

setting up 's appointment. I can't tell you how grateful I am to be

part of this group. I'm getting a lot of great information and I feel so much

better about my son's infantile scoliosis. Feel free to call me at ,

I'd love to talk to you! I've already talked to and Caflin.

They are both wonderful people and have helped me tremendously. is

sending me the DVD and I hope to get it in a few days. She said it would be very

helpful to us. She also recommended the article to read and I plan to look over

it tonight with my husband.

My son's COBB angle is 27 degrees. The doctor told us that his curve might be

worse than that since the x-ray was done lying down. Do not know what his RVAD

is. The doctor, believe or not, did not mention anything about it. I discovered

it when I was doing some research on the web. We have an appointment next Monday

to have an MRI done to rule out any neurological issues.

I sure do appreciate all the support! Please call me when you get the chance.

I'm available any time.

Sincerely,

Tina

wrote:

Hi Tina! Welcome to the group. There is another little boy in the San Diego

area who has Infantile scoli. His family travels to the Shriner's in Erie, PA to

get his casts. It seems that they ran into the same set of problems it sounds

like you have already encountered.

I think you are doing the right thing by arming yourself with knowledge, doing

research, joining the group, and reading infantilescoliosis.org in it's

entirety. Have you ordered the DVD yet? It will answer a lot of your questions

about casting and Dr. Min Mehta. I would suggest you read her article in the

files section of the group.

Has had an MRI yet? Hopefully you can get your ped to order the

MRI for you. Sometimes you will also need a renal ultrasound, an eye slit test,

and an echo cardiogram. These tests need to be performed before casting can

begin to rule out a congenital condition or a connective tissue disorder. Do you

know what his curve's COBB angle measurement is? Has his RVAD been measured? To

find definitions to terms you will be becoming familiar with, visit the website

http://www.infantilescoliosis.org/terms.htm .

If you would like to chat, e-mail me privately with your number and a good

time to call. You're already making great decisions. Keep up your strength and I

wish you and your entire family the very best.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

bugman201 wrote:

Hello Everyone,

My name is Tina Doolittle and my son was recently diagnosed

with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

ortho surgeon in San Diego and rapidly discovered that we knew more

about infantile scoliosis than she did. She claimed that Scoliosis

would never resolve and a brace might be needed to prevent the

curvature from worsening. We were not satisfied with the doctor's

diagnosis, so we decided to take matters into our own hands. We are

doing a lot of research and have learned about infantilescoliosis.org

and the treatments involving casting at various Shriners' hospitals.

The nearest facility that offers the casting treatment seems to be in

Salt Lake City. We are in Southern California and would prefer to find

treatment closer. Can anyone recommend any good doctors in

California? If so, please share with us your experience. However, we

will take any advice you can give.

Sincerely,

The Doolittles

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

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

[Guest guest]

You sound like a determined Mommy and you will demand the best treatment for

. I hope that you can get into SLC or Dr. Kishan.

If you do indeed see that your son is a candidate for casting and that his

scoli is progressive, then you will be in the right hands.

It sounds like you've got a lot of support and answers already.

Our son was diagnosed at 3m old and is now 19m old. He was in 7 casts and has

now " graduated " to a brace. His curvature is down from 46 w/an RVAD of 64 to 8

w/a minimal RVAD.

Good luck w/your journey , keep us posted.

and Evan

bugman201 wrote:

Hello Everyone,

My name is Tina Doolittle and my son was recently diagnosed

with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

ortho surgeon in San Diego and rapidly discovered that we knew more

about infantile scoliosis than she did. She claimed that Scoliosis

would never resolve and a brace might be needed to prevent the

curvature from worsening. We were not satisfied with the doctor's

diagnosis, so we decided to take matters into our own hands. We are

doing a lot of research and have learned about infantilescoliosis.org

and the treatments involving casting at various Shriners' hospitals.

The nearest facility that offers the casting treatment seems to be in

Salt Lake City. We are in Southern California and would prefer to find

treatment closer. Can anyone recommend any good doctors in

California? If so, please share with us your experience. However, we

will take any advice you can give.

Sincerely,

The Doolittles

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

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Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Hi Tina,

My family lives in San Diego and our youngest daughter, , had her first

cast applied at Shriners in Erie, PA in February. She just turned 18 months old

yesterday, so she was 15 1/2 months when it was put on. Her scoliosis was

diagnosed when she was 6 months old. We too were unhappy with doctors in San

Diego and made the decision to travel. We would have gone to Salt Lake City but

they could not see her soon enough. We have transfered there however, and her

second cast is scheduled at the end of this month. We had a very good experience

with Shriners Erie, and has adjusted amazingly well to her cast. We are

anxious to see how much correction has been acheived. Please feel free to email

me or call me .

&

parents to daughters Raegan 3 1/2 & 18 months

Newly Diagnosed

Hello Everyone,

My name is Tina Doolittle and my son was recently diagnosed

with infantile Scoliosis. He is 10 mos. old. We visited a pediatric

ortho surgeon in San Diego and rapidly discovered that we knew more

about infantile scoliosis than she did. She claimed that Scoliosis

would never resolve and a brace might be needed to prevent the

curvature from worsening. We were not satisfied with the doctor's

diagnosis, so we decided to take matters into our own hands. We are

doing a lot of research and have learned about infantilescoliosis. org

and the treatments involving casting at various Shriners' hospitals.

The nearest facility that offers the casting treatment seems to be in

Salt Lake City. We are in Southern California and would prefer to find

treatment closer. Can anyone recommend any good doctors in

California? If so, please share with us your experience. However, we

will take any advice you can give.

Sincerely,

The Doolittles

__________________________________________________

[Guest guest]

hi there i don't know what they use in your country but in califorina its

best to get a 504 or and iep now while he is young. really hard to get when

they

are older. good luck you need it (school bla ) chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

Hi Jodi and

We too, live in Australia with our daughter who is now 9. What

state/ city are you in? I may be able to give you some Doctors who can

help and tell you those to avoid!!

Good Luck

Therese

>

> Hi, my son is 5 and he has been diagnosed with Periodic Fever

Syndrome,

> WOW i have so many questions i dont know where to start. Does anyone

> have any problems with their child at school. ie.. getting the

school

> to ring when he starts to get a fever or gets tummy pain?

> Jodi and (AUSTRALIA)

>

[Guest guest]

Give us more details on 's story.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's new at http://www.aol.com

[Guest guest]

Dear Kim,

For many patients, the myotomy surgery is a new lease of life. We have to admit that we will always have this disorder/disease, but it need not destroy our lives. There are many examples here of achalasians who are healthy, strong and happy. A lot of us have been in that poor state, losing weight, anaemic etc. due to the poor nutrition we are capable of absorbing because basically it won't go down the chute. LOL

Please be hopeful and positive. It is a very successful surgery for many.

Good luck to you both,

Best Wishes from Ann in England

From: kimcesa <kimcesa@...>Subject: newly diagnosedachalasia Date: Wednesday, 18 June, 2008, 8:58 AM

hi,my husband was diagnosed in april and scheduled for a myotomy with dr lukatich on mon.,6-23.i am trying to learn all i can about this condition because i don`t think my husband is realizing the long road ahead.he is way past even an attempt at dilation and has lost about 35 lbs. in the last few months.some days he can`t even swallow water. any help or words of encouragement for us would be appreciated.thanks,kim

Sent from .

A Smarter Email.

[Guest guest]

>hi Ann,

so nice to hear from you.are you speaking from experience(about the

surgery ,I mean).What amount of time is the recovery period for a

myotomy?

Kim

> Dear Kim,

>  

> For many patients, the myotomy surgery is a new lease of life. We

have to admit that we will always have this disorder/disease, but it

need not destroy our lives. There are many examples here of

achalasians who are healthy, strong and happy. A lot of us have been

in that poor state, losing weight, anaemic etc. due to the poor

nutrition we are capable of absorbing because basically it won't go

down the chute. LOL

>  

> Please be hopeful and positive. It is a very successful surgery for

many.

>  

> Good luck to you both,

> Best Wishes from Ann in England

>

>

>

> From: kimcesa <kimcesa@...>

> Subject: newly diagnosed

> achalasia

> Date: Wednesday, 18 June, 2008, 8:58 AM

>

>

>

>

>

>

> hi,

> my husband was diagnosed in april and scheduled for a myotomy with

dr

> lukatich on mon.,6-23.i am trying to learn all i can about this

> condition because i don`t think my husband is realizing the long

road

> ahead.he is way past even an attempt at dilation and has lost about

35

> lbs. in the last few months.some days he can`t even swallow water.

any

> help or words of encouragement for us would be appreciated.

> thanks,

> kim

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>