new to group

July 6, 2010

Hi ,

My daughter was casted three weeks ago for the first time. Type in " Quinn " in

the search box and read some of my recent posts. I hope the feedback will be

helpful. YES, it does get easier!!! I wouldn't even know that my daughter was

wearing a cast, based on her current actions.

Take care,

Aimee

>

> Hi,

> I am a mom from outside the Boston area of a 16 month old child who has just

had her first cast put on for scoliosis. My husband and I do not know any other

parents who have been through this and were looking for some additional

support. She is really having a tough weekend and just wanted some feedback

about the first cast..please tell me this gets easier. thanks so much..

>

July 6, 2010

,

It gets MUCH easier. This is definately the hardest part. The beginning.

Watching them as they relearn what they had already mastered. Makenna was older

(2.5) when we first started casting, so although time was not on our side, she

was able to maintain her mobility.

Your daughter will amaze you with her ability to adjust to her new circumstance.

She will inspire you

You've come to the right place for support and answers.

Amy

Mom to Makenna, 3 years old. In 3rd cast from Chicago Shriners.

>

> Hi,

> I am a mom from outside the Boston area of a 16 month old child who has just

had her first cast put on for scoliosis. My husband and I do not know any other

parents who have been through this and were looking for some additional

support. She is really having a tough weekend and just wanted some feedback

about the first cast..please tell me this gets easier. thanks so much..

>

July 7, 2010

Thank you everyone for responding..I actually cried reading your emails. has a 53 curve and was diagnosed at 9 months. We are being casted at Childrens Hospital in Boston. This has been such a difficult couple of days and just knowing there are other parents who have experienced this is helpful. We felt so alone..I know in the next few week I'm sure I will have so many questions and this is such a great resource!!! Thanks again!!

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Mon, July 5, 2010 10:08:12 PMSubject: Re: new to group

Hi, welcome to CAST! Yes, it does get easier! The first cast is the hardest, it can take a few weeks for your child to adjust and get all of their skills back, but every day does get better and better. I found the whole first month pretty hard emotionally, but my son was up and going and got it down with great determination. He had trouble getting up from the floor- he would get stuck like a turtle on his back or front and need to be picked back up at first. He also had trouble turning over in his crib and climbing stairs in the beginning. Your child will amaze you. What hospital do you go to? Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: Leary <sleary7676 (DOT) com>infantile scoliosis treatment @groups. comSent: Mon, July 5, 2010 6:35:37 PMSubject: [infantile_scoliosi s] new to group

Hi,

I am a mom from outside the Boston area of a 16 month old child who has just had her first cast put on for scoliosis. My husband and I do not know any other parents who have been through this and were looking for some additional support. She is really having a tough weekend and just wanted some feedback about the first cast..please tell me this gets easier. thanks so much..

July 7, 2010

,

Forgive me for not remembering, but does Boston Children's do Mehta Method or EDF casting? That is, casting done on a 3 dimensional table with a large front window, as well as a smaller window in the cast in the back? The last thing I want to do is give you anything more to worry about right now, but Mehta or EDF casting can be a cure, while a Risser cast may only hold the curve, and I would be remiss if I didn't ask, as your child is still in that best, crucial window of rapid growth under age 2. If you have already spoken to or Jenn L. about it, I'm sure you already know all about this. We just want the right info to get to families dealing with this condition, to lessen your length of treatment time and possibly avoid surgery completely for your child. You could consider going for your next cast to a Mehta trained doctor, if not. Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners,

currently down from 62 degrees to 19.7 in cast)

From: Leary <sleary7676@...>infantile scoliosis treatment Sent: Tue, July 6, 2010 6:17:54 PMSubject: Re: new to group

Thank you everyone for responding.. I actually cried reading your emails. has a 53 curve and was diagnosed at 9 months. We are being casted at Childrens Hospital in Boston. This has been such a difficult couple of days and just knowing there are other parents who have experienced this is helpful. We felt so alone..I know in the next few week I'm sure I will have so many questions and this is such a great resource!!! Thanks again!!

From: NIck Guthe <nickguthe (DOT) com>infantile scoliosis treatment @groups. comSent: Mon, July 5, 2010 10:08:12 PMSubject: Re: [infantile_scoliosi s] new to group

Hi, welcome to CAST! Yes, it does get easier! The first cast is the hardest, it can take a few weeks for your child to adjust and get all of their skills back, but every day does get better and better. I found the whole first month pretty hard emotionally, but my son was up and going and got it down with great determination. He had trouble getting up from the floor- he would get stuck like a turtle on his back or front and need to be picked back up at first. He also had trouble turning over in his crib and climbing stairs in the beginning. Your child will amaze you. What hospital do you go to? Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: Leary <sleary7676 (DOT) com>infantile scoliosis treatment @groups. comSent: Mon, July 5, 2010 6:35:37 PMSubject: [infantile_scoliosi s] new to group

Hi,

I am a mom from outside the Boston area of a 16 month old child who has just had her first cast put on for scoliosis. My husband and I do not know any other parents who have been through this and were looking for some additional support. She is really having a tough weekend and just wanted some feedback about the first cast..please tell me this gets easier. thanks so much..

July 8, 2010

NIck Guthe <nickguthe@...> wrote:

>,

>

>Forgive me for not remembering, but does Boston Children's do Mehta Method or

>EDF casting? That is, casting done on a 3 dimensional table with a large front

>window, as well as aÂ smaller window in the cast in the back? The last thing I

>want to do isÂ give you anything more to worry about right now, but Mehta or

EDF

>casting can be a cure, while a Risser cast may only hold the curve, and

IÂ would

>be remiss if I didn't ask, as your child is still in that best, crucial window

>of rapid growth under age 2. If you have already spoken to or Jenn L.

>about it, I'm sure you already know all about this. We just want the right info

>to get to families dealing with this condition, to lessen your length of

>treatment time and possibly avoid surgery completely for your child. You could

>consider going for your next cast to a Mehta trained doctor, if not.

>Â Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners,

>currently down from 62 degrees toÂ 19.7 in cast)

>

>________________________________

>From: Leary <sleary7676@...>

>infantile scoliosis treatment

>Sent: Tue, July 6, 2010 6:17:54 PM

>Subject: Re: new to group

>

>Â

>Thank you everyone for responding.. I actually cried reading your emails.Â

>has a 53 curve and was diagnosed at 9 months.Â We are being casted at

Childrens

>Hospital in Boston. This has been such a difficult couple of days and just

>knowing there are other parents who have experienced thisÂ is helpful.Â We

felt

>so alone..I know in the next fewÂ week I'm sure I will have so many questions

and

>this is such a great resource!!!Â Thanks again!!

>

>________________________________

>From: NIck Guthe <nickguthe (DOT) com>

>infantile scoliosis treatment @groups. com

>Sent: Mon, July 5, 2010 10:08:12 PM

>Subject: Re: [infantile_scoliosi s] new to group

>

>Â

>Hi, welcome to CAST! Yes, it does get easier! The first cast is the hardest, it

>can take a few weeks for your child to adjust and get all of their skills back,

>but every day does get better and better. I found the whole first month pretty

>hard emotionally, but my son was up and going and got it down with great

>determination. He had trouble getting up from the floor- he would get stuck

like

>aÂ turtle on his back or front and need to be picked back up at first. He also

>had trouble turning over in his crib and climbing stairsÂ in the beginning.

Your

>child will amaze you. What hospital do you go to?Â

>Â Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners,

>currently down from 62 degrees toÂ 19.7 in cast)

>

>________________________________

>From: Leary <sleary7676 (DOT) com>

>infantile scoliosis treatment @groups. com

>Sent: Mon, July 5, 2010 6:35:37 PM

>Subject: [infantile_scoliosi s] new to group

>

>Â

>Hi,

>I am a mom from outside the Boston area of a 16 month old child who has just

had

>her first cast put on for scoliosis.Â My husband and I do not know any other

>parents who have been through this and were looking for some additional

>support.Â She is really having a tough weekend and just wanted some feedback

>about the first cast..please tell me this gets easier.Â thanks so much..

>

July 11, 2010

Hi Alison

Welcome to the group.. The early gagging and breathing issues is particularly interesting, and many on the group have children with compromised breating mechanisms... my daughter was the same...

We are using TST as a really powerful and simple way to redevelop breathing mechanism which once re-established helps with all other neural and physical development.

TST has its own file on this group.. and the lady who developed this therapy Scotson is supporting more and more ASD kids to achieve predictable improvements.

The reason most regression happens at two ish is because at this stage the body and brain begin to demand more oxygen to support the growing and development systems... a compromised Diaphragm and ability to breath cannot support this development and so the body slowly reduces or shuts down neural development to ensure that there is enough oxygen to protect the brain.

I have been on a 17 year journey with my daugther, only discovering TST a year ago.. and boy do I wish I had invested my money in recovering her breathing mechanism first.. it would have speeded up other recovery and saved us many thousands of pounds in other treatments.,

Best Wishes and please feel free to contact me off line if you are interested in learning more about this powerfully natural treatment.

Tracey

On Sun, Jul 11, 2010 at 8:26 AM, josephrabbit2000 <rowbotham.alison@...> wrote:

HelloI'm new to this group and have absolutley loads of questions.I have a 2 1/2 year old ds currently under assessment process. Child development centre want me to send him to pre-school in Sept so they can do next part of assessment.I'm really not sure how I feel about this at moment.

Some days/weeks his symptons are much worse than others. I'm struggling to unravel whats going on with Charlie.He was in distress from day 1. At 11 weeks started episodes of gaggng in sleep - I thought he wasn't breathing. Daignosed with 'probable' silent reflux - I 'm still not convinced. Put on reflux meds - got worse with any meds. constant crying, urticaria, eczema,wind, never slept.Lots of loose stools (still doesn't have formed stools)

Had normal 2,3 and 4 month jabs but time for MMR I'd become much wiser. No MR, no more jabs.Exclusively breastfed until weaning - after weaning got even worse.At 12 months went on full feingold - fantstic improvements. Went further and followed failsafe, much better. Few months ago went onto tri enza (took along time as struggled but got there, started with no fenol).

Turned life around, much happier, started babbling, started playing. been able to add back phenolic foods but cannot get on dairy.This is whats puzzling me:Charlies comprehensive stool analysis was good Only showed a few parasites (and this was before enzymes), digstions seems fine - no yeast.

Definitely has yeast problem - had oral thrush a few times and in nappy region. Also gets fungal type eczema.Had blood amino acids at hops - no major difficienciesMicronutrients - very low in Vit D (started supps)

Espa research - showed leaky gut and gluten peptides (no had any caisin ohter than breastmilk)Hair analysis = low mg and zinc, some small amounts of metals (I know they don't sho to start with)Charlie currently has significant speech delay (althougg he has started but not very understandable). He is very sensory, needs must be met instantly and to me its becoming more and more obvious that he is different to other children (although many family memebers can't see it). He can't stand anything hot (or even slightly warm - water, food). Mealtimes are a night mare.

We have a good spell and then he gets a slight cold/virus - cope with it Ok but afterwards things go so backwards for a good few weeks then it starts allo over again. He stops eating, goes manic, cries a lot, leans over setee with his head in his hands (just doesn't know what to do with himself). He goes back to choking on food, excema flares up and stools become offensive.

Each time he has a virus it affects him in the same way salicyalte did before no fenol - I can only assume its to do with brain activity, just not sure what to do about it.I have loads of questions and will post them seperately in hope that individuals can help with different issues.

Fortunately we were involved with a nutritionist very early as I have a 8 year old daughter with a blood disorder who uses nutritional therapy - without this knowledge Charlie would be in a real mess.I feel I'm not been taken seriously be his doctors - I think htis is bacuse many of him symtons are releived by his diet and supplement programme.

Sorry this si so long - I've so much to learn.Best wishesAlison R

July 11, 2010

On 11 July 2010 08:26, josephrabbit2000 <rowbotham.alison@...> wrote:

> Hello

>

> I'm new to this group and have absolutley loads of questions.

>

> I have a 2 1/2 year old ds currently under assessment process. Child

development centre want me to send him to pre-school in Sept so they can do next

part of assessment.I'm really not sure how I feel about this at moment.

>

> Some days/weeks his symptons are much worse than others. I'm struggling to

unravel whats going on with Charlie.

>

> He was in distress from day 1. At 11 weeks started episodes of gaggng in

sleep - I thought he wasn't breathing. Daignosed with 'probable' silent reflux

- I 'm still not convinced. Put on reflux meds - got worse with any meds.

constant crying, urticaria, eczema,wind, never slept.Lots of loose stools (still

doesn't have formed stools)

** This to me would indicate gluten and dairy free diet could help charlie.

>

> Had normal 2,3 and 4 month jabs but time for MMR I'd become much wiser. No

MR, no more jabs.

>

> Exclusively breastfed until weaning - after weaning got even worse.

> At 12 months went on full feingold - fantstic improvements. Went further and

followed failsafe, much better. Few months ago went onto tri enza (took along

time as struggled but got there, started with no fenol).

>

> Turned life around, much happier, started babbling, started playing. been

able to add back phenolic foods but cannot get on dairy.

** It was sometime before i could go back on dairy as the issue is a

food addiction which takes longer to heal than other types of

intolerances/allergies.

>

> This is whats puzzling me:

> Charlies comprehensive stool analysis was good Only showed a few parasites

(and this was before enzymes), digstions seems fine - no yeast.

>

> Definitely has yeast problem - had oral thrush a few times and in nappy

region. Also gets fungal type eczema.

>

> Had blood amino acids at hops - no major difficiencies

> Micronutrients - very low in Vit D (started supps)

> Espa research - showed leaky gut and gluten peptides (no had any caisin ohter

than breastmilk)

** i wouldnt trust those tests as ive heard of many cases where

avoiding gluten or dairy when the result was negative has still be

beneficial in the long run. The only way you can know for sure is to

try the lifestyle and see what reactions you get.

> Hair analysis = low mg and zinc, some small amounts of metals (I know they

don't sho to start with)

Do you supplement with these? B6 and taurine might be needed as well

as they work with mg.

>

> Charlie currently has significant speech delay (although he has started but

not very understandable). He is very sensory, needs must be met instantly and to

me its becoming more and more obvious that he is different to other children

(although many family members can't see it). He can't stand anything hot (or

even slightly warm - water, food). Mealtimes are a night mare.

* For me the main things that caused me to gag were the smell of malt

vinegar causing nausea, coffee smell causing me to gag and being

unable to eat garden peas. i can eat them now and they dont repulse

me.

>

> We have a good spell and then he gets a slight cold/virus - cope with it Ok

but afterwards things go so backwards for a good few weeks then it starts allo

over again. He stops eating, goes manic, cries a lot, leans over setee with his

head in his hands (just doesn't know what to do with himself). He goes back to

choking on food, excema flares up and stools become offensive.

* are you on any immune supports to help him?

>

> Each time he has a virus it affects him in the same way salicyalte did before

no fenol - I can only assume its to do with brain activity, just not sure what

to do about it.

>

> I have loads of questions and will post them seperately in hope that

individuals can help with different issues.

>

> Fortunately we were involved with a nutritionist very early as I have a 8 year

old daughter with a blood disorder who uses nutritional therapy - without this

knowledge Charlie would be in a real mess.

>

> I feel I'm not been taken seriously by his doctors - I think this is because

many of his symtons are releived by his diet and supplement programme.

>

> Sorry this is so long - I've so much to learn.

Im on biomed due to conventional medicine being unable to help me. im

having a fibromyalgia flare and having autistic related mental health

problems as well.

--

is

October 28, 2010

Welcome to the group! We have parents with congential scoli and teathered cord

problems as well. You will find a lot of help, resources and support here.

Just wanted to say welcome! We are a very friendly active group!

Jo <huiandling@...> wrote:

>Hi all,

>I have been so relieved to find this group! We have a 3 year old daughter with

congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks

post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi,

and a hairy nevus.We adopted her last March from China and are absolutely in

love!! She is a ball of laughs and endless energy and has amazed us with her

grasp of skills in just 6 short months.She came to us with super low tone and

only walking with support.She is now running even thought she is on activity

restriction!!I thought that possibly we might be able to have her casted, but

the more I have been reading, it sounds like that might not be an option. Our

ortho was quick on the first visit as far as treatment plans as the diastem. and

tethering had to be addressed first by the neurosurgeon. He briefly discussed

rods in the future.

>I'm hoping to find someone who might have a child with similar issues. I have

heard that the hospital that we go to in Boston is not doing EDF casting, but

then I read that recently it was done. Can someone e-mail me privately the

doctor that did it? I hope that is ok to ask? I really hate to think of more

major surgery at this point, but if it is necessary then we will have to. Sorry

for such a long post but with all that is involved, it is hard to sum it up in a

sentence or two!

>Glad to be a part of the group,

>Jo

>huiandling@...

>

October 28, 2010

Welcome to CAST Jo, like said, there are a lot of families on here with similiar issues, but we all have unique situations. There is always hope, just remember to ask a lot of questions and advocate for your child. You are the only voice she has. My son does NOT have congenital Scoli but does have a small syrnx, and a repaired tethered cord. He was casted but did not have any correction b/c he was diagnosed too late. He is in a brace right now and functions just fine. We are facing surgery in the future as well. Take it one day at a time. We are here to listen.

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: <missikay10@...>infantile scoliosis treatment Sent: Wed, October 27, 2010 8:39:37 PMSubject: Re: New to group

Welcome to the group! We have parents with congential scoli and teathered cord problems as well. You will find a lot of help, resources and support here.Just wanted to say welcome! We are a very friendly active group!Jo <huiandling@...> wrote:>Hi all,>I have been so relieved to find this group! We have a 3 year old daughter with congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from China and are absolutely in love!! She is a ball of laughs and endless energy and has amazed us with her grasp of skills in just 6 short months.She came to us with super low tone and only walking with support.She is now running even thought she is on

activity restriction!!I thought that possibly we might be able to have her casted, but the more I have been reading, it sounds like that might not be an option. Our ortho was quick on the first visit as far as treatment plans as the diastem. and tethering had to be addressed first by the neurosurgeon. He briefly discussed rods in the future.>I'm hoping to find someone who might have a child with similar issues. I have heard that the hospital that we go to in Boston is not doing EDF casting, but then I read that recently it was done. Can someone e-mail me privately the doctor that did it? I hope that is ok to ask? I really hate to think of more major surgery at this point, but if it is necessary then we will have to. Sorry for such a long post but with all that is involved, it is hard to sum it up in a sentence or two! >Glad to be a part of the group,>Jo>huiandling@...>>

October 28, 2010

Welcome to CAST, Jo!

I would contact more than a few ET docs to see if they would be willing to

apply EDf casting to your lil one. Reassure them that you realize a

plaster cast will never cure her structural anomolies, but a properly

applied EDF could help in maintaining body shape, rotation, progression,

alignment, etc.....Until a more concrete plan is developed for her very

complicated case..... A series of proper EDF can also buy invaluable

growth time.

I've noticed that most docs arent eager to apply casts (EDF or Risser) to

congenital cases because the cast is just buying time prior to the

inevitable surgery....But, I expect this to change. Properly applied EDF

can help maintain congenital cases until a plan is developed. Why wait

and watch congenital cases progress too? I realize that some cases are

soooo complicated and perhaps casting may not be of benefit.....But, there

ARE some children who can benefit. Grace is proof of that and her story

is so promising for congenital cases & EDF casting... I hope the docs are

opening up their minds to applying this gentle treatment modality for

their young congenital cases. Please keep us posted and good luck.

HRH

> Hi all,

> I have been so relieved to find this group! We have a 3 year old daughter

> with congenital scoliosis w/ a 40' curve, diastematomyelia (just had

> surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several

> abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from

> China and are absolutely in love!! She is a ball of laughs and endless

> energy and has amazed us with her grasp of skills in just 6 short

> months.She came to us with super low tone and only walking with

> support.She is now running even thought she is on activity restriction!!I

> thought that possibly we might be able to have her casted, but the more I

> have been reading, it sounds like that might not be an option. Our ortho

> was quick on the first visit as far as treatment plans as the diastem. and

> tethering had to be addressed first by the neurosurgeon. He briefly

> discussed rods in the future.

> I'm hoping to find someone who might have a child with similar issues. I

> have heard that the hospital that we go to in Boston is not doing EDF

> casting, but then I read that recently it was done. Can someone e-mail me

> privately the doctor that did it? I hope that is ok to ask? I really hate

> to think of more major surgery at this point, but if it is necessary then

> we will have to. Sorry for such a long post but with all that is involved,

> it is hard to sum it up in a sentence or two!

> Glad to be a part of the group,

> Jo

> huiandling@...

>

October 29, 2010

Hi Jo, welcome to CAST!I think Boston is doing Mehta/EDF casting, is it Boston Children's, guys? Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Jo <huiandling@...>infantile scoliosis treatment Sent: Wed, October 27, 2010

6:14:08 PMSubject: New to group

Hi all,

I have been so relieved to find this group! We have a 3 year old daughter with congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from China and are absolutely in love!! She is a ball of laughs and endless energy and has amazed us with her grasp of skills in just 6 short months.She came to us with super low tone and only walking with support.She is now running even thought she is on activity restriction!!I thought that possibly we might be able to have her casted, but the more I have been reading, it sounds like that might not be an option. Our ortho was quick on the first visit as far as treatment plans as the diastem. and tethering had to be addressed first by the neurosurgeon. He briefly discussed rods in the future.

I'm hoping to find someone who might have a child with similar issues. I have heard that the hospital that we go to in Boston is not doing EDF casting, but then I read that recently it was done. Can someone e-mail me privately the doctor that did it? I hope that is ok to ask? I really hate to think of more major surgery at this point, but if it is necessary then we will have to. Sorry for such a long post but with all that is involved, it is hard to sum it up in a sentence or two!

Glad to be a part of the group,

Jo

huiandling@...

October 29, 2010

Hi Jo, welcome to CAST!I think Boston is doing Mehta/EDF casting, is it Boston Children's, guys? Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Jo <huiandling@...>infantile scoliosis treatment Sent: Wed, October 27, 2010

6:14:08 PMSubject: New to group

Hi all,

I have been so relieved to find this group! We have a 3 year old daughter with congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from China and are absolutely in love!! She is a ball of laughs and endless energy and has amazed us with her grasp of skills in just 6 short months.She came to us with super low tone and only walking with support.She is now running even thought she is on activity restriction!!I thought that possibly we might be able to have her casted, but the more I have been reading, it sounds like that might not be an option. Our ortho was quick on the first visit as far as treatment plans as the diastem. and tethering had to be addressed first by the neurosurgeon. He briefly discussed rods in the future.

I'm hoping to find someone who might have a child with similar issues. I have heard that the hospital that we go to in Boston is not doing EDF casting, but then I read that recently it was done. Can someone e-mail me privately the doctor that did it? I hope that is ok to ask? I really hate to think of more major surgery at this point, but if it is necessary then we will have to. Sorry for such a long post but with all that is involved, it is hard to sum it up in a sentence or two!

Glad to be a part of the group,

Jo

huiandling@...

October 29, 2010

Hi Jo, Welcome ot the group. Yes - Boston Children's does Mehta. I put Dr. K's contact info up on the website. Him and the whole team are great.... We had or first cast on for PIS back in September...If you hadn't seen it yet email me and let me know - I can give you info and share our experience with you..ThanksLeighmom to Noah - almost 4 - 1st cast in Boston on 09/13/10 from 40s/50s to teens...From: NIck Guthe <nickguthe@...>Subject: Re: New to groupinfantile scoliosis treatment Date:

Thursday, October 28, 2010, 6:55 PM

Hi Jo, welcome to CAST!I think Boston is doing Mehta/EDF casting, is it Boston Children's, guys? Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Jo <huiandling@...>infantile scoliosis treatment Sent: Wed, October 27, 2010

6:14:08 PMSubject: New to group

Hi all,

I have been so relieved to find this group! We have a 3 year old daughter with congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from China and are absolutely in love!! She is a ball of laughs and endless energy and has amazed us with her grasp of skills in just 6 short months.She came to us with super low tone and only walking with support.She is now running even thought she is on activity restriction!!I thought that possibly we might be able to have her casted, but the more I have been reading, it sounds like that might not be an option. Our ortho was quick on the first visit as far as treatment plans as the diastem. and tethering had to be addressed first by the neurosurgeon. He briefly discussed rods in the future.

I'm hoping to find someone who might have a child with similar issues. I have heard that the hospital that we go to in Boston is not doing EDF casting, but then I read that recently it was done. Can someone e-mail me privately the doctor that did it? I hope that is ok to ask? I really hate to think of more major surgery at this point, but if it is necessary then we will have to. Sorry for such a long post but with all that is involved, it is hard to sum it up in a sentence or two!

Glad to be a part of the group,

Jo

huiandling@...

March 23, 2011

Hi ,

My name is Jasmine, my son too is autistic. Just diagnosed when he was 2. He is now 3 and attends public school and receives services through the school. He too holds his hands over his ears, when it is loud or if he doesn't want to hear what you are saying....he can be so stubborn, but he is extremely smart. He just has problems with speech, he still babbles as if he were a little baby and his behavior can get bad too if he doesn't get his way. All in all, he is absolutely wonderful and I believe I was hand picked to be his mom!

Thanks

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of OuhidaSent: Wednesday, March 23, 2011 12:40 AMAutism and Aspergers Treatment Subject: New to group

Hi everyone, I am a sahm to 3 kids. 1 daughter 15yo, 2 sons 7 and 3. My older son has been diagnosed as childhood apraxia of speech and received therapy and services through the school district. I cant tell you how well he is doing and I truly appreciate those that has helped him. He was 2 years old and not talking. My younger son Adam had a grand mal seizure last year and was hospitalized and every test was done. EEG CT normal, He was put on antiseizure meds until he turns 6 yo. We had him tested last week becuase although he was saying words and sentences unlike my older son he displayed behavior patterns that might be autistic. Well he has been diagnosed as mild autism specturm disorder with sensory problems as he holds his hands over his ears over loud sounds. I am looking for information and to meet other parents who have had experience in this area as this is totally different than what we went through with Noah. Just to introduce myself. My name is .

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May 8, 2011

Welcome! I'm glad you found out about the Symposium AND the group!

We're glad to accompany you on your journey.

Kathy

May 8, 2011

Welcome! Have you heard of the traditional food potlucks/shop n swaps? The next

one is on May 21 from 2-6pm at the Lauderdale City Hall. Watch this list for

other details. The goals of these events are to connect people with each other,

with food, and with knowledge.

If you aren't yet comfortable sharing a dish, let me know. I can bring a lIttle

extra.

Looking forward to meeting in person!

.

May 15, 2011

Thanks for the invite - sorry that we won't be able to make this, but we have

some things we've committed to. Maybe the next one!

>

> Welcome! Have you heard of the traditional food potlucks/shop n swaps? The

next one is on May 21 from 2-6pm at the Lauderdale City Hall. Watch this list

for other details. The goals of these events are to connect people with each

other, with food, and with knowledge.

>

> If you aren't yet comfortable sharing a dish, let me know. I can bring a

lIttle extra.

>

> Looking forward to meeting in person!

>

> .

>

May 17, 2011

Chis is this you? If not, sorry.... My son has sotos too....

Sent from my iPhone

On May 17, 2011, at 7:40 AM, " abacusbeads " <abacusbeads@...> wrote:

Hello,

We are new to the infantile scoliosis group. A little about us...

My husband and I have been blessed with an amazing daughter. She is currently 15

months old and is lots of fun. She loves books and music and is a thoughtful,

caring child.

Unfortunately our daughter has some health concerns. She has Sotos syndrome, a

rare genetic overgrowth condition, which was diagnosed at 12 months of age.

Individuals with Sotos syndrome often have gross motor delays and this is true

of our daughter. Prenatally she was diagnosed with hydronephrosis which is

resolving on its own. At birth she was diagnosed with hip dysplasia and has had

successful treatment with spica casting and bracing (she continues to wear a

Rhino Cruiser brace at night). Around five months of age she was diagnosed with

infantile scoliosis. Her scoliosis is thought to be progressive and the degree

of her curve has increased over time. Currently her curvature is 44 degrees (I

believe it was initially around 30 degrees) and she will have a Mehta cast paced

next month.

What can I say; we just love this kid to pieces! Sometimes I get frustrated

talking all this medical talk all the time because this child is so much more

than a group of diagnoses. She is a wonderful person with many strengths and

talents. I talk the medical talk though because I want to find the best ways to

help our daughter so she fully use all her wonderful strengths and be the person

she wants to be. We also hope that by sharing our story we can help others.

Thanks for reading. We look forward to learning and sharing with the group.

Peace.

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

May 17, 2011