new to group

September 3, 2011

my son will start back to school on sept 6 which i am very nervous about because I jsut mention the bus and he starts whining. i have not started any prescription medications as of it. i was thinking of going back to get him reevaluated and then start on some kind of medication. Does anyone have any expoerience or advice on using meds. I know part of the problem is the lack of routine because he did run wild over the summer since we traveled so much but the main problem is the agression. he starts biting his hand and screaming. he is getting too heavy for me to carry him anymore and he knows this, What type of doctor should i go to for meds. I DONT KNOW where to go from here

September 3, 2011

Where do you live?

Neuro Psyche or child psyche.

We have had excellent results with Datyranna and Catapris.

How old is your son?

My guy is almost 9 and has loved teh bus for years. I think he feels like a " big kid " on the bus "

Kate

http://chicagoautismmom.blogspot.com/

On Fri, Sep 2, 2011 at 7:07 PM, Neena Raghavan <neenanil@...> wrote:

my son will start back to school on sept 6 which i am very nervous about because I jsut mention the bus and he starts whining. i have not started any prescription medications as of it. i was thinking of going back to get him reevaluated and then start on some kind of medication. Does anyone have any expoerience or advice on using meds. I know part of the problem is the lack of routine because he did run wild over the summer since we traveled so much but the main problem is the agression. he starts biting his hand and screaming. he is getting too heavy for me to carry him anymore and he knows this, What type of doctor should i go to for meds. I DONT KNOW where to go from here

-- Kate MyersTravel Desk773.904.8267 V773.698.8184 F

September 3, 2011

Where do you live?

Neuro Psyche or child psyche.

We have had excellent results with Datyranna and Catapris.

How old is your son?

My guy is almost 9 and has loved teh bus for years. I think he feels like a " big kid " on the bus "

Kate

http://chicagoautismmom.blogspot.com/

On Fri, Sep 2, 2011 at 7:07 PM, Neena Raghavan <neenanil@...> wrote:

my son will start back to school on sept 6 which i am very nervous about because I jsut mention the bus and he starts whining. i have not started any prescription medications as of it. i was thinking of going back to get him reevaluated and then start on some kind of medication. Does anyone have any expoerience or advice on using meds. I know part of the problem is the lack of routine because he did run wild over the summer since we traveled so much but the main problem is the agression. he starts biting his hand and screaming. he is getting too heavy for me to carry him anymore and he knows this, What type of doctor should i go to for meds. I DONT KNOW where to go from here

-- Kate MyersTravel Desk773.904.8267 V773.698.8184 F

September 3, 2011

You could try a DAN doctor who specializes in autism. Your pediatrician could try him on Risperidol which is supposed to be for behaviors. Hope this helps.

Lana

From: Neena Raghavan <neenanil@...>"autism " <autism >Sent: Friday, September 2, 2011 7:07 PMSubject: Re: new to group

my son will start back to school on sept 6 which i am very nervous about because I jsut mention the bus and he starts whining. i have not started any prescription medications as of it. i was thinking of going back to get him reevaluated and then start on some kind of medication. Does anyone have any expoerience or advice on using meds. I know part of the problem is the lack of routine because he did run wild over the summer since we traveled so much but the main problem is the agression. he starts biting his hand and screaming. he is getting too heavy for me to carry him anymore and he knows this, What type of doctor should i go to for meds. I DONT KNOW where to go from here

September 6, 2011

I have had very good success using a DAN Dr. Here is some info on what they say

about aggression.

http://www.generationrescue.org/dr-jerry-s-blog/biomedical-intervention/what-can\

-i-do-to-help-my-son-with-aggression-q-and-a-with-dr-jerry-kartzinel/

=)

Alice

>

> You could try a DAN doctor who specializes in autism. Your pediatrician could

try him on Risperidol which is supposed to be for behaviors. Hope this helps.

> Â

> Lana

>

> From: Neena Raghavan <neenanil@...>

> " autism "

> Sent: Friday, September 2, 2011 7:07 PM

> Subject: Re: new to group

>

> Â

> my son will start back to school on sept 6 which i am very nervous about

because I jsut mention the bus and he starts whining. i have not started any

prescription medications as of it. i was thinking of going back to get him

reevaluated and then start on some kind of medication. Does anyone have any

expoerience or advice on using meds. I know part of the problem is the lack of

routine because he did run wild over the summer since we traveled so much but

the main problem is the agression. he starts biting his hand and screaming. he

is getting too heavy for me to carry him anymore and he knows this, What type of

doctor should i go to for meds. I DONT KNOW where to go from here

>

September 7, 2011

where do you live? How old is he? Summer is the toughest time if he has trouble with transiitions (which most do). The loss of structure is tough on these kids. Does your child receive behavioral therapy? One of the problems of meds...is once you go down that rabbit hole, it's difficult to climb back out. Sometimes it is the only answer. It sounds like he has anxiety issues. Do you chart his day? It does help if they know what is coming next.From: alicein_wanderland <alice@...>Subject: Re: new to groupautism Date: Tuesday, September 6, 2011, 9:37 AM

I have had very good success using a DAN Dr. Here is some info on what they say about aggression.

http://www.generationrescue.org/dr-jerry-s-blog/biomedical-intervention/what-can-i-do-to-help-my-son-with-aggression-q-and-a-with-dr-jerry-kartzinel/

=)

Alice

>

> You could try a DAN doctor who specializes in autism. Your pediatrician could try him on Risperidol which is supposed to be for behaviors. Hope this helps.

> Ã‚

> Lana

>

> From: Neena Raghavan <neenanil@...>

> "autism " <autism >

> Sent: Friday, September 2, 2011 7:07 PM

> Subject: Re: new to group

>

> Ã‚

> my son will start back to school on sept 6 which i am very nervous about because I jsut mention the bus and he starts whining. i have not started any prescription medications as of it. i was thinking of going back to get him reevaluated and then start on some kind of medication. Does anyone have any expoerience or advice on using meds. I know part of the problem is the lack of routine because he did run wild over the summer since we traveled so much but the main problem is the agression. he starts biting his hand and screaming. he is getting too heavy for me to carry him anymore and he knows this, What type of doctor should i go to for meds. I DONT KNOW where to go from here

>

September 8, 2011

my son is going to be 9 in november. we live in rochester hills,mi. wehave never did any of the prescription meds nor have we done behavioral therapy. we did do aba and some bimedical the aba helps alittle but we dont have the time to do the necessary amount of hours they recoomend. the biomed didnt do much for us. I would like to start one of the meds or behavioral but not sure how to go about it or who i should go to to start. any advice would be appreciated. he did start school with alittle fuss but not as much as we were expecting. things seem to be getting better so hopefully as he gets into a routine things will change

September 8, 2011

My son is 9 as well, been through the ABA and has been on many dif meds from risperadone-celexa and is currently only on focalin. He has the aggression issues, been to the hospital for 5 days because his aggression was just plain dangerous to himself and everyone around him including his older brother. Tantrums, hitting, kicking, biting and throwing anything he can pick up, knocked over dressers, destroys his glasses. Eitherway, hospital visit was pointless and I still get calls from his school 1-3 times a week because he's either cursing/mouthing off or escalating to a full blown tantrum. The school actually had to make a small room with padded walls for him and another child. I am a full time mother/housewife and I believe Ive tried everything to get this under control- restriction, going over what happened and having him explain what he should have done, popped his butt, ignored it, medication... over the past few years he's been to many doctors and been through many medications and he still is in the same situation. Wish I could offer advice, but I have learned a little. First, trust your instincts because you know your child more than anyone even the doctors and second, if you start meds be prepared for having to up the dose and up the dose and them want to add another medication. If my son doesnt take his Focalin he is so hyper that you cant even get him to sit down for more than 5 seconds. He gets very defiant with me and the teachers at school, its worse at school because they do not have the ability to watch his every move, gesture and conversation and he even has a shadow. One wrong word that he disagrees with or something that I or his teacher say that isnt right to him and he is going off.

I did have a question for anyone that has similar problems; Does anyone's child seem to be on a roller coaster? It seems my son goes through a couple months of really good behavior, sweet as he can be and then he just starts up again, almost like he challenges everyone for a few months and then perfect child again. Over the past 7 years when he's been behaving really well I just eat it up because it has never failed that the bad behavior will be coming too soon, up and down. You wanna keep everything as close to the same as possible to keep the good behavior but no matter what he still starts up again.

On Sep 1, 2011 11:15 AM, " NeenaR " <neenanil@...> wrote:

>

> Hi everyone

> i am new to the group and I am hoping that your experience can help me. I am a mother of an 8 1/2 year old son with autism. He was relatively easy going with no major issues but recently during the summer he has become more and more aggressive and stubborn. He is more willful. He understand what he is doing but it is almost like a control issue with him. He is also having more tantrums and screaming episodes. we have tried chelation,limited biomeds, hbot,aba etc with not much help. How do I deal with him. There are days that I am totally frustrated and really afraid for the future. I dont know what options I have. thanks in advance for your help

>

October 13, 2011

Your story is very common. You are not alone.My recommendation to everyone is to refuse payment to any physician that attempts to prescribe a statin.Be polite, but be firm. Once physicians begin to realize any attempt to prescribe a statin will nix the office visit fee and chase away clients, the statin scandal will begin to crumble under its own fraud.Bobby Alternate email: marooned@...Bobby- Your Caribbean Travel Plannerwww.pinkystravel.com International Destinations, Resorts, Vacation PackagesPhilippine Destination SpecialistFrom: contessastellanova <dmt@...>Lipitor Sent: Wednesday, October 12, 2011 7:03 PMSubject: New to group

I was diagnosed a month ago with statin-induced polymyositis- muscle weakness and muscle pain. My rheumatologist took me off Lipitor completely. He questioned why my regular Dr. had upped my Lipitor so much from 10 mg to 40 mg all at once with no blood work done at all. I was on this about 3 months when the fatigue, weakness and pain started. I had to beg almost every Doctor I see to finally feel that I was heard by my rheumatologist.

I take Co-Q-10 100 mg a day and pain medicine as needed. Now he wants me to start on an antidepressant ( can't remember the name right this minute but as my husband says oh that's on TV all the time!) to decrease some of the pain. I have not done it, wanted to see what the group thought.

My cholesterol on the Lipitor 40 mg was around 230 with ok HDL but high LDL and high triglycerides which I take Trilipix for.

He did check my muscle enzymes and they were normal. My regular Doctor said I had low B-12 so take a B-12 shot once a month.

I'd love to hear from others that have this condition.

Thank you!

October 13, 2011

Hi and welcome to the group. I have been a member here for a few years, but

have been more active in the last few weeks as I have suffered a relapse due to

my doctor pushing me to start statins again. Pravastatin 20mg, a generic for

Pravacohol was prescribed, a fairly low dose, I think.

If you go back and read my post from late September, post #9901, you can read

some of my story. My original problems started in 2000, when I was 45 years

old, I am now 57. The replies I've gotten from members might be of interest to

you.

I might be wrong, but I am assuming you are female by your signature, and there

is a very interesting article posted in a reply to me by in post #9947.

If you are not female, I apologize. Maybe then you could use some on the advice

posted by Jay, Lee, or .

Good luck. I think you are very lucky that your polymyositis was recognized as

statin-related. I read that PM is an auto-immune disease. Have you tested

positive for ANA (anti-nuclear anti-bodies)?

When I was going throught all the testing years ago, for stuff like RA, Lyme

disease, etc, I did test positive for elevated ANA. But further, specific

testing by a rheumatologist did not show anything definite. So back then, I had

no answers.

By the way, the antidepressant your doctor wants you to start is probably

Cymbalta. I was prescribed this years ago to help with my pain. I tried it and

it did slightly elevated the depressed mood I had that was brought on by my

degraded quaility of life, but it didn't help with the pain. It only caused me

insomnia, and restless legs (I took it at bedtime, because I was not instructed

how to take it), and constipation was another added gift of Cymbalta. I was

also prescribed Percocet for nighttime pain, and Darvocet for daytime pain

and many different anti-inflammatitories and Lidocaine patches, all with no

relief. My CPK enzyme level was normal also.

I also take CoQ 10, but as soon as I forget to take it for a few days, the pain

comes creeping back. I think my muscle damage is permenant. I got a new brand

called Qunol. It is supposed to have 300% better absorption. It says the daily

value is supposed to be 500% but I don't know if that value has been established

by the FDA or anyone else. I am going to take it twice a day until I start feel

better.

Connie

>

> I was diagnosed a month ago with statin-induced polymyositis- muscle weakness

and muscle pain. My rheumatologist took me off Lipitor completely. He questioned

why my regular Dr. had upped my Lipitor so much from 10 mg to 40 mg all at once

with no blood work done at all. I was on this about 3 months when the fatigue,

weakness and pain started. I had to beg almost every Doctor I see to finally

feel that I was heard by my rheumatologist.

> I take Co-Q-10 100 mg a day and pain medicine as needed. Now he wants me to

start on an antidepressant ( can't remember the name right this minute but as my

husband says oh that's on TV all the time!) to decrease some of the pain. I

have not done it, wanted to see what the group thought.

> My cholesterol on the Lipitor 40 mg was around 230 with ok HDL but high LDL

and high triglycerides which I take Trilipix for.

> He did check my muscle enzymes and they were normal. My regular Doctor said I

had low B-12 so take a B-12 shot once a month.

> I'd love to hear from others that have this condition.

> Thank you!

>

October 13, 2011

I need to make a correction to my previous post #9955.

The statement I made about the new brand of CoQ 10 I am taking said that the coq

10 was 500% of daily value. This was incorrect. 500% refers to the amount of

Vitamin E that is also in the supplement.

Sorry for the error.

Connie

> >

> > I was diagnosed a month ago with statin-induced polymyositis- muscle

weakness and muscle pain. My rheumatologist took me off Lipitor completely. He

questioned why my regular Dr. had upped my Lipitor so much from 10 mg to 40 mg

all at once with no blood work done at all. I was on this about 3 months when

the fatigue, weakness and pain started. I had to beg almost every Doctor I see

to finally feel that I was heard by my rheumatologist.

> > I take Co-Q-10 100 mg a day and pain medicine as needed. Now he wants me to

start on an antidepressant ( can't remember the name right this minute but as my

husband says oh that's on TV all the time!) to decrease some of the pain. I

have not done it, wanted to see what the group thought.

> > My cholesterol on the Lipitor 40 mg was around 230 with ok HDL but high LDL

and high triglycerides which I take Trilipix for.

> > He did check my muscle enzymes and they were normal. My regular Doctor said

I had low B-12 so take a B-12 shot once a month.

> > I'd love to hear from others that have this condition.

> > Thank you!

> >

>

March 6, 2012

Hey Marina--Logan lives in overalls! I think we have a pair in every color! lol! From: jogen30 <jogen30@...> infantile scoliosis treatment Sent: Monday, March 5, 2012 8:57 PM Subject: New to group

Hello everyone! My name is Marina and I have a 3 year old son who just got casted on Feb 29th. So far he is handling it like a champ but mommy is not handling it too well!!!LOL I need some helpful hints on diapering and clothing. I have tried reg diapers and pull ups and it seems that both are still a challenge. My son leaks at night time often and have tried using maxi pads and poise pads any tips on this would be useful too. Also, have any of use used overalls or suspenders so that pants stay up?!

Thanks so much!

Marina from GA mom to

March 6, 2012

We have a great system for night diapers- I use a overnight diaper and line it with 2 Double Up pads- one down the middle and one across the back, just below where the diaper meets the back of the cast- sort of a T shape. (the pads are by Medline & are specifically for this and work great- I bought them on amazon.)Over the diaper & pads we put the outside shell of a cloth diaper- you don't need the insert, just the absorbent shell, or you can use the plastic training pants with absorbent lining. It's kind of a process getting ready for bed & our baby girl has quite the booty once it's all on! It's totally worth it though- no cast messes & she gets to sleep a full 11-12 hours with no diaper changes. Hopefully this makes sense- let me know if you have questions! Mommy to Olive, 17 months72 degrees out of cast, 27 degrees again in 2nd cast On Mar 5, 2012, at 7:57 PM, "jogen30" <jogen30@...> wrote:

Hello everyone! My name is Marina and I have a 3 year old son who just got casted on Feb 29th. So far he is handling it like a champ but mommy is not handling it too well!!!LOL I need some helpful hints on diapering and clothing. I have tried reg diapers and pull ups and it seems that both are still a challenge. My son leaks at night time often and have tried using maxi pads and poise pads any tips on this would be useful too. Also, have any of use used overalls or suspenders so that pants stay up?!

Thanks so much!

Marina from GA mom to

=

March 6, 2012

One more note in addition to what I wrote below- we use Huggies overnight diapers & the whole thing (diaper, pads & outer diaper shell, goes under the edge of the cast, not up over the cast! I do pull her pj pants up over the bottom of the cast, but that's the only layer- and those do not stay up, as we all know! Also, I slather her bottom with Aquaphor- it is amazing stuff! We also use it on her hip bones just under the cast every night because they are usually red after a day of playing & rubbing against the cast. Ok, that's it from me! : ) On Mar 6, 2012, at 8:58 AM, Logan <mariaelogan@...> wrote:

We have a great system for night diapers- I use a overnight diaper and line it with 2 Double Up pads- one down the middle and one across the back, just below where the diaper meets the back of the cast- sort of a T shape. (the pads are by Medline & are specifically for this and work great- I bought them on amazon.)Over the diaper & pads we put the outside shell of a cloth diaper- you don't need the insert, just the absorbent shell, or you can use the plastic training pants with absorbent lining. It's kind of a process getting ready for bed & our baby girl has quite the booty once it's all on! It's totally worth it though- no cast messes & she gets to sleep a full 11-12 hours with no diaper changes. Hopefully this makes sense- let me know if you have questions! Mommy to Olive, 17 months72 degrees out of cast, 27 degrees again in 2nd cast On Mar 5, 2012, at 7:57 PM, "jogen30" <jogen30@...> wrote:

Hello everyone! My name is Marina and I have a 3 year old son who just got casted on Feb 29th. So far he is handling it like a champ but mommy is not handling it too well!!!LOL I need some helpful hints on diapering and clothing. I have tried reg diapers and pull ups and it seems that both are still a challenge. My son leaks at night time often and have tried using maxi pads and poise pads any tips on this would be useful too. Also, have any of use used overalls or suspenders so that pants stay up?!

Thanks so much!

Marina from GA mom to

=

March 6, 2012

Thanks sooooooo much for the info!

> >

> >>

> >> Hello everyone! My name is Marina and I have a 3 year old son who

just got casted on Feb 29th. So far he is handling it like a champ but mommy is

not handling it too well!!!LOL I need some helpful hints on diapering and

clothing. I have tried reg diapers and pull ups and it seems that both are still

a challenge. My son leaks at night time often and have tried using maxi pads and

poise pads any tips on this would be useful too. Also, have any of use used

overalls or suspenders so that pants stay up?!

> >>

> >> Thanks so much!

> >> Marina from GA mom to

> >>

> > =

> >

> > TODAY(Beta) â€¢ Powered by

> > Celebs who are expecting this year

> > Minnillo and hubby Nick Lachey await a little one, as does his ex,

Simpson.

> > Privacy Policy

>

March 7, 2012

Oh and suggestions on hair washing???Marina

April 10, 2012

Hi Meredith my son has a genetic disorder called Prader-Willi syndrome

he is 3. We just had his first cast put on in Feb. Welcome to the group! rom

what my doc told me he will keep casting until he gets the best correction

possible and then we will go to a brace. I know that there are others on you who

can chime in with much more knowledge than me! This group is great:)

Good luck with everything,

Marina

>

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8

and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat

and is in the severe/profound category. She is small and is basically the size

of a typical 4 year old. We are going to attempt to cast her for the next three

years and then do the fusion surgery. Are there any families out there that

have a child who is somewhat involved that have had the casting done? Also, how

long have many of you done the casting for? I do not mean to sound naive, but

do they correct it with a gradual straightening? Is that why the casts are

changed every five months? We will be going to Riley in Indianapolis.

> Meredith

>

April 10, 2012

Hi Marina, thank you for the reply. My daughters scoliosis was first noticed at age 13 months. She wore a TLSO brace but never all the time. We have seen an orthopaedic doctor every six months. We are worried that she will not tolerate it. She is nonverbal and developmentally about 9 months. We believe she is experiencing pain now. When they do the casting do they come home immediately? Her pulmonary doctor is concerned about how tightly they will wrap her and her breathing. When I see the numbers listed and knowing that we are starting at 86, I feel like we are starting way to late.MeredithSent from my iPhoneOn Apr 10, 2012, at 8:24 AM, "jogen30" <jogen30@...> wrote:

Hi Meredith my son has a genetic disorder called Prader-Willi syndrome he is 3. We just had his first cast put on in Feb. Welcome to the group! rom what my doc told me he will keep casting until he gets the best correction possible and then we will go to a brace. I know that there are others on you who can chime in with much more knowledge than me! This group is great:)

Good luck with everything,

Marina

>

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis.

> Meredith

>

=

April 10, 2012

Meredith--I think there have been some moms that said their kiddos breathing got better once they were casted due to the pressure of the spine taken off the lungs/organs. They will probably chime in soon..... Logan's mama (45 down to 7, 13th cast, 2 1/2 years old) From: Meredith Serpas <meredithdoo@...> "infantile scoliosis treatment " <infantile scoliosis treatment > Sent: Tuesday, April 10, 2012 12:26 PM Subject: Re: Re: New To Group

Hi Marina, thank you for the reply. My daughters scoliosis was first noticed at age 13 months. She wore a TLSO brace but never all the time. We have seen an orthopaedic doctor every six months. We are worried that she will not tolerate it. She is nonverbal and developmentally about 9 months. We believe she is experiencing pain now. When they do the casting do they come home immediately? Her pulmonary doctor is concerned about how tightly they will wrap her and her breathing. When I see the numbers listed and knowing that we are starting at 86, I feel like we are starting way to late.MeredithSent from my

iPhoneOn Apr 10, 2012, at 8:24 AM, "jogen30" <jogen30@...> wrote:

Hi Meredith my son has a genetic disorder called Prader-Willi syndrome he is 3. We just had his first cast put on in Feb. Welcome to the group! rom what my doc told me he will keep casting until he gets the best correction possible and then we will go to a brace. I know that there are others on you who can chime in with much more knowledge than me! This group is great:)

Good luck with everything,

Marina

>

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis.

> Meredith

>

=

April 10, 2012

Good to know. Her immune system is not great.Sent from my iPhoneOn Apr 10, 2012, at 12:49 PM, Medlin <amanda.medlin@...> wrote:

Meredith--I think there have been some moms that said their kiddos breathing got better once they were casted due to the pressure of the spine taken off the lungs/organs. They will probably chime in soon..... Logan's mama (45 down to 7, 13th cast, 2 1/2 years old) From: Meredith Serpas <meredithdoo@...> "infantile scoliosis treatment " <infantile scoliosis treatment > Sent: Tuesday, April 10, 2012 12:26 PM Subject: Re: Re: New To Group

Hi Marina, thank you for the reply. My daughters scoliosis was first noticed at age 13 months. She wore a TLSO brace but never all the time. We have seen an orthopaedic doctor every six months. We are worried that she will not tolerate it. She is nonverbal and developmentally about 9 months. We believe she is experiencing pain now. When they do the casting do they come home immediately? Her pulmonary doctor is concerned about how tightly they will wrap her and her breathing. When I see the numbers listed and knowing that we are starting at 86, I feel like we are starting way to late.MeredithSent from my

iPhoneOn Apr 10, 2012, at 8:24 AM, "jogen30" <jogen30@...> wrote:

Hi Meredith my son has a genetic disorder called Prader-Willi syndrome he is 3. We just had his first cast put on in Feb. Welcome to the group! rom what my doc told me he will keep casting until he gets the best correction possible and then we will go to a brace. I know that there are others on you who can chime in with much more knowledge than me! This group is great:)

Good luck with everything,

Marina

>

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis.

> Meredith

>

=

April 10, 2012

Hi Meredith,

Welcome to CAST. Please read the " Growth as a corrective force " article

when you get the chance and also view A New Direction DVD. These two

items will help you to better understand the principles of this gentle

method.

Ive seen many older & syndromic children benefit from Mehta casting. Mine

was one of them...Mehtas specialized EDF will help to improve her spinal

alignment, can improve lung space, may improve cosmetic deformity, can

improve balance (and confidence) and most importantly can buy valuable

growth time for the thorax before any surgery. Please keep the questions

coming!

HRH

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is

> 8 and has a degree of 86. My daughter has a genetic disorder called Cri

> Du Chat and is in the severe/profound category. She is small and is

> basically the size of a typical 4 year old. We are going to attempt to

> cast her for the next three years and then do the fusion surgery. Are

> there any families out there that have a child who is somewhat involved

> that have had the casting done? Also, how long have many of you done the

> casting for? I do not mean to sound naive, but do they correct it with a

> gradual straightening? Is that why the casts are changed every five

> months? We will be going to Riley in Indianapolis.

> Meredith

April 10, 2012

Hi Meredith, She should tolerate it well if its applied properly. Do you

know where she will be treated yet?

Let us know if you have any questions...We are here to help.

HRH

> Hi Marina, thank you for the reply. My daughters scoliosis was first

> noticed at age 13 months. She wore a TLSO brace but never all the time. We

> have seen an orthopaedic doctor every six months. We are worried that she

> will not tolerate it. She is nonverbal and developmentally about 9 months.

> We believe she is experiencing pain now. When they do the casting do they

> come home immediately? Her pulmonary doctor is concerned about how tightly

> they will wrap her and her breathing. When I see the numbers listed and

> knowing that we are starting at 86, I feel like we are starting way to

> late.

>

> Meredith

>

> Sent from my iPhone

>

> On Apr 10, 2012, at 8:24 AM, " jogen30 " <jogen30@...> wrote:

>

>> Hi Meredith my son has a genetic disorder called Prader-Willi

>> syndrome he is 3. We just had his first cast put on in Feb. Welcome to

>> the group! rom what my doc told me he will keep casting until he gets

>> the best correction possible and then we will go to a brace. I know that

>> there are others on you who can chime in with much more knowledge than

>> me! This group is great:)

>>

>> Good luck with everything,

>> Marina

>>

>> >

>> > Hi, my name is Meredith and I am new to this site. My daughter Olivia

>> is 8 and has a degree of 86. My daughter has a genetic disorder

>> called Cri Du Chat and is in the severe/profound category. She is

>> small and is basically the size of a typical 4 year old. We are going

>> to attempt to cast her for the next three years and then do the fusion

>> surgery. Are there any families out there that have a child who is

>> somewhat involved that have had the casting done? Also, how long have

>> many of you done the casting for? I do not mean to sound naive, but

>> do they correct it with a gradual straightening? Is that why the

>> casts are changed every five months? We will be going to Riley in

>> Indianapolis.

>> > Meredith

>> >

>>

April 10, 2012

Absolutely ! A proper Mehta cast will have a widely trimmed

mushroom shaped window (chest expansion window) with rib flaps in front

and a hole on the concavity side in back. That window in front will allow

the child to take big, full & proper breaths...Thanks for bringing that

up!

HRH

> Meredith--

> I think there have been some moms that said their kiddos breathing got

> better once they were casted due to the pressure of the spine taken off

> the lungs/organs.

> They will probably chime in soon.....

> Â

>

> Logan's mama (45 down to 7, 13th cast, 2 1/2 years old)

>

> ________________________________

> From: Meredith Serpas <meredithdoo@...>

> " infantile scoliosis treatment "

> <infantile scoliosis treatment >

> Sent: Tuesday, April 10, 2012 12:26 PM

> Subject: Re: Re: New To Group

>

> Â

>

> Hi Marina, thank you for the reply. My daughters scoliosis was first

> noticed at age 13 months. She wore a TLSO brace but never all the time. We

> have seen an orthopaedic doctor every six months. Â We are worried that

> she will not tolerate it. She is nonverbal and developmentally about 9

> months. We believe she is experiencing pain now. Â When they do the

> casting do they come home immediately? Her pulmonary doctor is concerned

> about how tightly they will wrap her and her breathing. Â When I see the

> numbers listed and knowing that we are starting at 86, I feel like we are

> starting way to late.

>

> Meredith

>

> Sent from my iPhone

>

> On Apr 10, 2012, at 8:24 AM, " jogen30 " <jogen30@...> wrote:

>

> Â

>>Hi Meredith my son has a genetic disorder called Prader-Willi

>> syndrome he is 3. We just had his first cast put on in Feb. Welcome to

>> the group! rom what my doc told me he will keep casting until he gets the

>> best correction possible and then we will go to a brace. I know that

>> there are others on you who can chime in with much more knowledge than

>> me! This group is great:)

>>

>>Good luck with everything,

>>Marina

>>

>>>

>>> Hi, Â my name is Meredith and I am new to this site. My daughter Olivia

>>> is 8 and has a degree of 86. Â My daughter has a genetic disorder

>>> called Cri Du Chat and is in the severe/profound category. Â She is

>>> small and is basically the size of a typical 4 year old. Â We are going

>>> to attempt to cast her for the next three years and then do the fusion

>>> surgery. Â Are there any families out there that have a child who is

>>> somewhat involved that have had the casting done? Â Also, how long have

>>> many of you done the casting for? Â I do not mean to sound naive, but

>>> do they correct it with a gradual straightening? Â Is that why the

>>> casts are changed every five months? Â We will be going to Riley in

>>> Indianapolis.

>>> Meredith

>>>

>>

>> =

>

April 10, 2012

It will be done at Riley Hospital in Indianapolis. Do they keep the children over night? Sorry for the questions but we just met with the Ortho Doc last Thursday and he was explaining what her options were at this time and for us to go home and get on this website and check out a couple more. I was picturing a cast like on a broken arm or leg and when we saw the U Tube video of changing a shirt it was open. Which will be great because she has a feeding tube.