New to the group

August 23, 2008

Welcome, Kim! Congratulations on getting back on the right track -- on

many levels. You'll find many kindred spirits here.

>

> Just by happenstance I discovered the itunes podcasts, which led me

> to find 's podcasts. It is my understanding that I'm supposed to

> introduce myself. I apoligize in advance if I write to much!

[...]

February 4, 2009

Welcome Anne!

brings ease to the struggle. Congratulations on finding her.

Jean

<br><br><br><blockquote

style='border-left: 2px solid rgb(16, 16, 255); margin-left: 5px; padding-left:

5px;'>From: annebfriscia & lt;annebfriscia@... & gt;<br>Subject:

New to the group<br>To:

insideoutweightloss <br>Date: Wednesday, February 4, 2009, 12:24

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<p>Hello all<br>

I am here because I am tried of the same old diet and exercise routines <br>

not resulting in lasting change for me. I have a huge amount of weight <br>

to lose and have had a weight problem for almost 40 years now. I have <br>

adopted a lifestyle of regular exercise and fairly healthy eating but <br>

am subject to emotional eating and have used food as comfort since <br>

childhood. & #39;s approach offers something that could break the <br>

cycle and get to the fundamental problm with my relationship with food <br>

and I am ready for that. So thanks for all your support and advice out <br>

there and keep the good vibes flowing. <br>

<br>

Anne<br>

<br>

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February 4, 2009

Welcome welcome to Iowl this is unlike anything I have ever tried. I am at my

goal weight and it is easy to be here! 's method showed me how to end my

love affair with food.

She has three guided journeys for sale and they are worth every nickel.

They revolutionized my life!

Le

Sent from my Verizon Wireless BlackBerry

New to the group

Hello all

I am here because I am tried of the same old diet and exercise routines

not resulting in lasting change for me. I have a huge amount of weight

to lose and have had a weight problem for almost 40 years now. I have

adopted a lifestyle of regular exercise and fairly healthy eating but

am subject to emotional eating and have used food as comfort since

childhood. 's approach offers something that could break the

cycle and get to the fundamental problm with my relationship with food

and I am ready for that. So thanks for all your support and advice out

there and keep the good vibes flowing.

Anne

March 25, 2009

, we're glad you're here. Welcome.

Jenn

March 25, 2009

Hi ,

We are happy you're here. We have been reading more than contributing, and with

young twins and both of us working long hours, we consider ourselves lucky to

have found this wonderful forum. We find it makes life just a little easier to

have a plan all laid out for us to follow by the numbers.

Good luck on your journey,

Peggy and Jon

Sent from my Verizon Wireless BlackBerry

New to the group

Hi - My name is and I just found 's podcasts on itunes. I've

struggled with my weight all my life. I've had times of great success with

losing weight and times when I couldn't stay on track for more than a few hours!

I joined weight watchers in January at my highest weight ever and I've lost 16

pounds since then. I want to ensure continued success on my journey and I am SO

happy to have found these podcasts! My husband and I are hoping to get pregnant

this year and I want to be healthy for that.

Thank you for welcoming me into the group - I look forward to sharing with you!

Thanks!!

April 9, 2009

Hi, Lori...I'm so happy you are here...Kellie has a boy entering puberty, as well as other mom's have boys IN puberty...hope you fine what you need here...I think you will.

I'm wife, and mom to 2...Lily (6), (29 months ASD)

e

To: AutismBehaviorProblems Sent: Wednesday, April 8, 2009 5:11:21 PMSubject: New to the Group

Hello! My name is Lori. I am a divorced mom with 2 kids, a 15yr old daughter & a 13yr old son, with autism. I just came across this group & needed to join, as his I am struggling sometimes with his behavioral issues. y was having a lot of behavorial issues such as scratching his face, spitting, and hitting others. (Mainly my mom & myself, but then he went for my daughter) I put him on risperdal about 2 yrs ago. The medicine has helped curb his aggressive behaviors. I also ended up having to request different teachers at the time as he couldn't stand the ones he had for 4yrs in a row. He did well for 2 yrs & had a great teacher. Now, he's in middle school & we're seeing more of the behavioral issues resurface again at school. Mainly its scratching his face up, which results in marks left all over his face for about a week. The Dr. is at a loss for how to treat this other than keep his nails short & wash the scratches. I

honestly feel this is due to his lack of love for his class. He's semi verbal. He's learned a lot of words from watching his movies. y is very sensitive to sound & for the most part, I got that issue as resolved as best as possible. I'm worried about how to deal with a lot of the "boy" puberty issues. It won't be long & he'll need to shave. I already have a struggle giving him a haircut & brushing his teeth as he is sensitve to the sensory stuff as well. I would ask his Dad but he's no longer involved in the kids live... he never coped well with the autism diagnosis & has another family. My Father has a difficult time coping with it as well. My fiance is in another state waiting for school to be over before we move there. Any suggestions for coping with shaving & other "boy" puberty issues?? Does anyone have ideas for his sleeping schedule? Usually he will sleep from 9pm until 6am for about 3 months. Then his sleeping schedule

changes from 11pm until about 2am. This will happen for about a month & then he'll go back to his other schedule. I tried Melatonin pills which my Dr suggested but after the first time, he refused to take any pills other than his Risperdal. (He still won't take ANY pills except his Risperdal & a Flintstone vitamin.) I see that there are quite a few Moms with teenage boys in the group. Hopefully we can all come up with ideas that work! Thanks for listening & I can't wait to help each other out!Lori

April 9, 2009

Hi Lori,

My son is just started the pre-puberty stuff and YES I find it very scary. We started him on the Risperdal and a low dose anti-anxiety med in the fall. He was having trouble with aggression and his OCD tendencies really turned into full blown OCD. We finally got the doses right and the right anti-anxiety med for him about 2 months ago and things have been going well. The other thing that really helped was a pair of ear muffs. They are wonderful. didn't seem to be sound sensitive until lately, he is semi verbal as well mostly wants and needs but lately his language is really growing. I think once he started to really listen more the sounds were too much for him. I found these ear muffs on-line at Amazon they come in colors and are made by Pelter. I paid about $15. a pair. wears them everyday and will even look for them when things

get noisy... so much better for him, he is talking more and really much happier. School also brings out high anxiety in sometimes. We have been working with them to give him more sensory breaks and trying to help learn that he can ask for them when he needs it. does take the melatonin and it helps his sleep. Could you try crushing it and dissolving it in a drink? We are lucky the Risperdal makes very sleepy so he only takes it at night and he falls asleep easily so we only use the melatonin if he seems extra wired. I hope things get better for you all soon, Kellie

To: AutismBehaviorProblems Sent: Wednesday, April 8, 2009 5:11:21 PMSubject: New to the Group

Hello! My name is Lori. I am a divorced mom with 2 kids, a 15yr old daughter & a 13yr old son, with autism. I just came across this group & needed to join, as his I am struggling sometimes with his behavioral issues. y was having a lot of behavorial issues such as scratching his face, spitting, and hitting others. (Mainly my mom & myself, but then he went for my daughter) I put him on risperdal about 2 yrs ago. The medicine has helped curb his aggressive behaviors. I also ended up having to request different teachers at the time as he couldn't stand the ones he had for 4yrs in a row. He did well for 2 yrs & had a great teacher. Now, he's in middle school & we're seeing more of the behavioral issues resurface again at school. Mainly its scratching his face up, which results in marks left all over his face for about a week. The Dr. is at a loss for how to treat this other than keep his nails short & wash the scratches. I

honestly feel this is due to his lack of love for his class. He's semi verbal. He's learned a lot of words from watching his movies. y is very sensitive to sound & for the most part, I got that issue as resolved as best as possible. I'm worried about how to deal with a lot of the "boy" puberty issues. It won't be long & he'll need to shave. I already have a struggle giving him a haircut & brushing his teeth as he is sensitve to the sensory stuff as well. I would ask his Dad but he's no longer involved in the kids live... he never coped well with the autism diagnosis & has another family. My Father has a difficult time coping with it as well. My fiance is in another state waiting for school to be over before we move there. Any suggestions for coping with shaving & other "boy" puberty issues?? Does anyone have ideas for his sleeping schedule? Usually he will sleep from 9pm until 6am for about 3 months. Then his sleeping schedule

changes from 11pm until about 2am. This will happen for about a month & then he'll go back to his other schedule. I tried Melatonin pills which my Dr suggested but after the first time, he refused to take any pills other than his Risperdal. (He still won't take ANY pills except his Risperdal & a Flintstone vitamin.) I see that there are quite a few Moms with teenage boys in the group. Hopefully we can all come up with ideas that work! Thanks for listening & I can't wait to help each other out!Lori

April 9, 2009

Hi Lori,

My grandson Tristan will be 13 this month and his self abuse and aggression toward others has increased. We don't want to put him on psychotropic meds because we tried one about 6 years ago and he regressed cognitively, academically and his behaviors worsened. Dr. Bernie Rimland gave his son B6 and magnesium, so I plan to give Tristan that and TMG.

C.

April 9, 2009

Hi Kellie,

We use headphone for y's sensitive ears. I get them in the hunting dept of

Walmart for about $8. Most people think he's listening to music but they really

help filter out the extra noise. He will take his Risperdal without a problem.

Any other medicine we've tried all of the tricks. Liquid medicine in his

drinks, smashing pills & putting in pudding or ice cream etc. He can taste it &

smell it. I can't even get him to take chewable kid's asprin. I will check out

the ear muffs on Amazon. Thanks!

Lori

>

> Hi Lori,

> My son is just started the pre-puberty stuff and YES I find it very

scary. We started him on the Risperdal and a low dose anti-anxiety med in the

fall. He was having trouble with aggression and his OCD tendencies really

turned into full blown OCD. We finally got the doses right and the right

anti-anxiety med for him about 2 months ago and things have been going well.

The other thing that really helped was a pair of ear muffs. They are

wonderful. didn't seem to be sound sensitive until lately, he is semi

verbal as well mostly wants and needs but lately his language is really

growing. I think once he started to really listen more the sounds were too much

for him. I found these ear muffs on-line at Amazon they come in colors and are

made by Pelter. I paid about $15. a pair. wears them everyday and will

even look for them when things get noisy... so much better for him, he is

talking more and really much

> happier. School also brings out high anxiety in sometimes. We have

been working with them to give him more sensory breaks and trying to help

learn that he can ask for them when he needs it. does take the melatonin

and it helps his sleep. Could you try crushing it and dissolving it in a

drink? We are lucky the Risperdal makes very sleepy so he only takes it at

night and he falls asleep easily so we only use the melatonin if he seems extra

wired. I hope things get better for you all soon, Kellie

>

> ________________________________

>

> To: AutismBehaviorProblems

> Sent: Wednesday, April 8, 2009 5:11:21 PM

> Subject: New to the Group

>

> Hello! My name is Lori. I am a divorced mom with 2 kids, a 15yr old daughter &

a 13yr old son, with autism. I just came across this group & needed to join, as

his I am struggling sometimes with his behavioral issues. y was having a

lot of behavorial issues such as scratching his face, spitting, and hitting

others. (Mainly my mom & myself, but then he went for my daughter) I put him on

risperdal about 2 yrs ago. The medicine has helped curb his aggressive

behaviors. I also ended up having to request different teachers at the time as

he couldn't stand the ones he had for 4yrs in a row. He did well for 2 yrs & had

a great teacher. Now, he's in middle school & we're seeing more of the

behavioral issues resurface again at school. Mainly its scratching his face up,

which results in marks left all over his face for about a week. The Dr. is at a

loss for how to treat this other than keep his nails short & wash the scratches.

I honestly feel this is due to

> his lack of love for his class. He's semi verbal. He's learned a lot of words

from watching his movies. y is very sensitive to sound & for the most part,

I got that issue as resolved as best as possible. I'm worried about how to deal

with a lot of the " boy " puberty issues. It won't be long & he'll need to shave.

I already have a struggle giving him a haircut & brushing his teeth as he is

sensitve to the sensory stuff as well. I would ask his Dad but he's no longer

involved in the kids live... he never coped well with the autism diagnosis & has

another family. My Father has a difficult time coping with it as well. My fiance

is in another state waiting for school to be over before we move there. Any

suggestions for coping with shaving & other " boy " puberty issues?? Does anyone

have ideas for his sleeping schedule? Usually he will sleep from 9pm until 6am

for about 3 months. Then his sleeping schedule changes from 11pm until about

2am. This will

> happen for about a month & then he'll go back to his other schedule. I tried

Melatonin pills which my Dr suggested but after the first time, he refused to

take any pills other than his Risperdal. (He still won't take ANY pills except

his Risperdal & a Flintstone vitamin.) I see that there are quite a few Moms

with teenage boys in the group. Hopefully we can all come up with ideas that

work! Thanks for listening & I can't wait to help each other out!

> Lori

>

July 25, 2009

Hi Francie

Wow, it sounds like you have a pretty decent program going. A pound a week loss is a safe loss too. It seems like you have found something that is working for you maybe just not as fast as you would like. I haven't done all the dvd's you have but have done some of them. I love the #3 workout of Jillian 's Shred. THAT is a decent workout. Quick but very effective. Also interval training is excellent for burning more calories. There are some good interval dvd's out there - or maybe you could incorporate a sprint in your walks and then alternate. Working out more with weights will help speed up your metabolism too and keep it there burning more calories:-) Personally I see results MUCH quicker with weights as far as getting toned and really looking like I workout.

Even though you don't like to write food down you might want to just try it for a little bit. It becomes second nature after a while. It has really helped me to see what I am doing, craving, etc.

A bad credit score is 600 below. Checking won't affect your score. See now!

July 25, 2009

Hi Francie!

Welcome!! I'm and I'm a WW leader in Michigan. WW says the top of your range for a healthy weight is 160 so your goal can be anywhere between 128 and 160 or you can get a note from a doctor saying that your goal should be something higher or lower than our ranges. Did you become a lifetime member? If so, weigh-ins and meetings are FREE if you're within 2 pounds of your goal weight. If your goal was 160 and you're at 163, lose one more pound on your own and then go back to meetings for free (and lose as much more as you want to for free, as long as you stay within the healthy weight range, I'm about 15 pounds under my goal weight). If you're not a lifetime member then you could actually bring in a note from your doctor that says your weight should be whatever it is now and then you'd just pay for 6 weeks of maintenance (during which time you could be losing too) or get back to 160 on your own and then come in for the 6 weeks of maintenance. After 6 weeks of maintenance you'd then be a lifetime member and you'd be able to attend meetings anywhere in the world for free for the rest of your life as long as you weigh in at least once per month and don't go higher than 2 pounds over your goal weight. If you miss a month or go more than 2 pounds over goal then you only pay the discounted rate for lifetime members until you are again within 2 pounds of goal (no registration fee either). I always gained as soon as I stopped attending meetings so this last time I came back (I quit attending meetings after making goal and then came back 3 times over my goal) I decided to see what would happen if I kept attending the meetings and now, 3 years and 25 pounds later, I'm still where I want to be. Just my story & info about WW you can take or leave! :-)

1 pound per week loss is fantastic!! Healthy weight loss is 1/2 pound to 2 pounds per week so you are doing GREAT!! You've already dropped 12 pounds from your high, that is great too! You don't say how old you are, but do you think it is reasonable for you to be at 145? Can you keep your weight there without being hyper aware of how much and what you're eating and exercising more than you really want to in order to keep it there? If so, then go for it, but if not, then consider a different goal. It is fantastic too that you notice yourself tightening up!! Often, it is the non-scale victories (how we look, how our clothes fit, etc.) that are most important!

As far as your weight loss efforts go, you say you're following the Core Plan (for anyone who joined WW this year, we don't have a separate "core" plan anymore, except the Simply Filling Technique, Core was blended with Flex and both are now the Momentum plan). Make sure you really are eating primarily core foods and try counting points for just the non-core foods you eat. Those "extras" can really add up without our knowing it! You might want to write down all your foods for one week (with or without counting points) just to see what you really are eating! Also, make sure you are being very faithful to the Good Health Guidelines (they would be in your week 1 booklet if you still have that), following core usually makes it easier to do that too. Get your water in, that will help a lot. Make sure too that you are eating enough. You say you've decreased your calories, but do you know how much you are really taking in (calories or points)? You might want to track for a week to be sure. Once again though, if you are losing 1 pound per week then you are doing everything RIGHT and you are doing GREAT!!! You don't want to lose weight faster than 2 pounds per week because then you risk losing muscle too. I know sometimes 1 pound per week doesn't feel like "enough" but a slower weight loss journey is a healthier one and while you want to look good for those pictures, you might want to focus especially on feeling great and being healthy for life!! :-)

Sounds like you've got some great workouts! I don't know Mission Specialist though, what is that (who is that)? Is it part of Barry's Bootcamp? Can you do your walking and DVD workouts when you back to school? If not, what do you do during the school year for exercise? I look forward to hearing more about your workouts and your weight loss journey too!

Which acronyms have you confused? It would be easier to answer your questions than provide you with a list since many of the ones used here are used across the internet (and in texting) so since I don't know how familiar you are with email and texting it would take longer to write you a list than to just answer your questions! We do call a lot of instructors by their first names, if you need to know last names just ask. We're a super friendly group and are always glad to have another vidiot (person who loves exercising with videos, it is not an insult) join us!

New to the group

Hi, I am 5' 7", and WW says 160 lbs is goal. I reached goal about a year ago, but my weight soared to 175 lbs. I currently am at 163, but I am one of those ladies that used to be naturally thin, until my 40's. So, in my mind, I would like to be back to 145. My wedding weight was 135.I walk about three miles daily, and am a teacher, so I have the summer off. Every day I have been working out with DVD's. I especially like Barry's Boot camp, and am currently adding the Mission Specialist workouts after the first workout.I also like Jillian s' Shred, and her other DVD, No More Trouble Zones. I don't like that she makes you do them twice. With Barry, it is one minute, and then we are on to something else.I just bought Chalean Extreme for $30 on Ebay. I hope this will be good for me. I have a tummy, but I am toned, and eager to get more muscle and less fat.I would love to get a list of what all your abbreviations mean. Maybe someone can add that to the files, so other newbies like me know what you are talking about.Any recommendations for my quest? I have decreased my calories this summer, but am not a fan of writing food down. I eat mostly WW Core food, but am not paying any money to WW. I am on my own. I have been losing about one pound per week. Seems low for all the work I have been doing, but I think I am building muscle at the same time. I look tighter.We are having a huge family party in late November, and I want to be down in weight for all the photos. I hate that my face is fatter than I want it to be in the photos.Francie

August 28, 2009

Hi Amy and Welcome to CAST! SO happy you found us. I would suggest going to the FILES section here on the group and read the first article you find there. ***Growth as a corrective force in the early treatment of Progressive Infantile Scoliosis***This article is written by Dr. Mehta, an exactly and must read article!AS far as questions on ISOP's website under the Resources tab you will find "Orthopedic Surgeon Questions"Where will Makenna go for casting?Also here on the group is a list of Mehta trained doctors if you should need any info. You will find those in the DATABASE section also here on the group. Let us know if you need any help finding all this and of course if you should have any question.You have found her curve early, but still with plenty of time to help her. 20 degrees is right

on the line of whether to treat or not. Did you get a RVAD measurement? This measurement is a good indication of whether it may progress or not. Keep us posted.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: New to the groupTo: infantile_scoliosis Date: Thursday, August 27, 2009, 10:00 PM

Hello,

My daughter Makenna has just been diagnosed with progressive scoliosis. She is 2 and 1/2 and we caught it early. She is only at a 20 degree curve. So I am hopeful that it was soon enough. We are in the process of trying to get her in for casting. I just wanted to introduce myself and say what a wonderful support group you all seem to be for one another.

Hopefully we will have a consultation appointment soon. I am gathering information from all of your experiences and trying to put together a list of fairly intelligent questions to ask... any suggestions?

This is all happening really fast, so I feel like I can hardly keep up with the information coming in - let alone keep it in an organized fashion in my brain! The x-ray to confirm the scoliosis was taken on August 12.

Amy

August 28, 2009

Hi Amy, welcome to CAST!

I just wanted to add that before casting is done, most doctors need an MRI to determine if the scoliosis is congenital, which may require surgery due to bone deformities, or idiopathic, meaning no known cause. Progressive scoliosis can progress very rapidly, depending on the case, so I would do what you're doing and waste no time in getting your appointments scheduled, just in case.

We had to get 2 MRIs, the first was of only the spine, then they did both the brain and spine. Myself and other parents here suggest having it all done at once if possible, to avoid 2. The MRI is to rule out other conditions and see if they can find a cause for the scoli.

Our son was progressing fast, in 6 weeks he went from 34 to 61 degrees. That is why I say not to wait, based on my experience, but every child is unique, so please don't let that scare you. If your child does need casting and you decide to do it, I can not recommend EDF casting done by a Mehta trained doctor highly enough.

So glad you found us, I know it's a lot of info to take in all at once. Ask any and all questions of this great group!

As I wrote in an earlier post, my son's story so far is on a web site, www.breezymama.com with some photos. It's under older entries, just click a few pages back to find it, titled Crooked Love.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: amscales11 <amscales11yahoo (DOT) com>Subject: [infantile_scoliosi s] New to the groupTo: infantile_scoliosis @yahoogroups. comDate: Thursday, August 27, 2009, 10:00 PM

Hello,My daughter Makenna has just been diagnosed with progressive scoliosis. She is 2 and 1/2 and we caught it early. She is only at a 20 degree curve. So I am hopeful that it was soon enough. We are in the process of trying to get her in for casting. I just wanted to introduce myself and say what a wonderful support group you all seem to be for one another. Hopefully we will have a consultation appointment soon. I am gathering information from all of your experiences and trying to put together a list of fairly intelligent questions to ask... any suggestions?This is all happening really fast, so I feel like I can hardly keep up with the information coming in - let alone keep it in an organized fashion in my brain! The x-ray to confirm the scoliosis was taken on August 12.Amy

August 28, 2009

Thanks Tasha and Heidi,

That's a good start for me. I feel like I have done a lot of research on the

Early Treatment with EDF using the Mehta Method and am confident that's the

direction we need to go. For me, I think I can only process this whole thing one

step at a time.

I am not sure how to classify Makenna's scoliosis... she has an underlying

genetic condition - Horizonatal Gaze Palsy with Progressive Scoliosis (HGPPS).

This diagnosis is made through MRI confirmation; there is a cleft on her brain

stem. So, we know the scoliosis will be progressive, but I am not sure if hers

would be classified as idopathic or congenital. So there is question number 1, I

guess!

We just did the spine MRI today. And her most recent brain MRI was done in July

of this year. And the x-rays were done August 12. So, we have all current

films!!! Sounds like that should speed things up.

We have already been to a pediatric orthopod. He wanted to put her in a brace

for four months and see if the curve progressed. At that point he was going to

recommend casting. I had done my own digging and research on HGPPS and been in

contact with researchers in both LA and Boston. The woman in Boston connected me

with a doctor in Turkey who has actually treated patients with the condition. It

was his feeling that the scoliosis was fairly resistant and progressive, and if

the curve was stable now, we should go for casting. I presented this information

to our doctor and he agreed. So we are in the process of getting a consultation

appointment at Shriners.

>

> From: amscales11 <amscales11yahoo (DOT) com>

> Subject: [infantile_scoliosi s] New to the group

> To: infantile_scoliosis @yahoogroups. com

> Date: Thursday, August 27, 2009, 10:00 PM

>

> Hello,

> My daughter Makenna has just been diagnosed with progressive scoliosis. She is

2 and 1/2 and we caught it early. She is only at a 20 degree curve. So I am

hopeful that it was soon enough. We are in the process of trying to get her in

for casting. I just wanted to introduce myself and say what a wonderful support

group you all seem to be for one another.

> Hopefully we will have a consultation appointment soon. I am gathering

information from all of your experiences and trying to put together a list of

fairly intelligent questions to ask... any suggestions?

> This is all happening really fast, so I feel like I can hardly keep up with

the information coming in - let alone keep it in an organized fashion in my

brain! The x-ray to confirm the scoliosis was taken on August 12.

>

> Amy

>

August 28, 2009

Hi Amy!

Someone else mentioned the horizontal gaze palsy. I saw it while reading through the stories on the ISOP website. Finn I think?? Might want to check the stories. I'm sure his Mom will respond soon!

shellie

Subject: RE: New to the GroupTo: infantile_scoliosis Date: Friday, August 28, 2009, 3:57 PM

Thanks Tasha and Heidi,That's a good start for me. I feel like I have done a lot of research on the Early Treatment with EDF using the Mehta Method and am confident that's the direction we need to go. For me, I think I can only process this whole thing one step at a time. I am not sure how to classify Makenna's scoliosis... she has an underlying genetic condition - Horizonatal Gaze Palsy with Progressive Scoliosis (HGPPS). This diagnosis is made through MRI confirmation; there is a cleft on her brain stem. So, we know the scoliosis will be progressive, but I am not sure if hers would be classified as idopathic or congenital. So there is question number 1, I guess!We just did the spine MRI today. And her most recent brain MRI was done in July of this year. And the x-rays were done August 12. So, we have all current films!!! Sounds like that should speed things up.We have already been to a pediatric orthopod. He wanted

to put her in a brace for four months and see if the curve progressed. At that point he was going to recommend casting. I had done my own digging and research on HGPPS and been in contact with researchers in both LA and Boston. The woman in Boston connected me with a doctor in Turkey who has actually treated patients with the condition. It was his feeling that the scoliosis was fairly resistant and progressive, and if the curve was stable now, we should go for casting. I presented this information to our doctor and he agreed. So we are in the process of getting a consultation appointment at Shriners.> > > From: amscales11 <amscales11@ yahoo. com>> Subject: [infantile_scoliosi s] New to the group> To:

infantile_scoliosis @yahoogroups. com> Date: Thursday, August 27, 2009, 10:00 PM> > > > > Hello,> My daughter Makenna has just been diagnosed with progressive scoliosis. She is 2 and 1/2 and we caught it early. She is only at a 20 degree curve. So I am hopeful that it was soon enough. We are in the process of trying to get her in for casting. I just wanted to introduce myself and say what a wonderful support group you all seem to be for one another. > Hopefully we will have a consultation appointment soon. I am gathering information from all of your experiences and trying to put together a list of fairly intelligent questions to ask... any suggestions?> This is all happening really fast, so I feel like I can hardly keep up with the information coming in - let alone keep it in an organized fashion in my brain! The x-ray to confirm the scoliosis was taken on August 12.> >

Amy>

August 29, 2009

Hi Amy,

That's great that you'll have all the films needed! The best way to go at most Shriners Hospitals appears to be to contact the Care Coordinator, it is Angie Livingston at SLC. You can call or email. Which Shriners that does Mehta casting is closest to you? It's great if you can fed-ex copies of your latest X-ray and MRIs on CD, along with a short version of your child's story so far- in the form of a letter to the casting doc (s) there. Also send a photo of your child's face, as it's nice to put a cute face to a name, and a photo or 2 of their back without a shirt on. This helped speed things up for us.

We also asked to be put in at their earliest cancellation and got moved up. Address the package to the Care Coordinator and the casting doc. You can get names from the group here. In the meantime, you can apply to Shriners online or by phone or fax, I believe. That's what we did first, then after speaking with Montoya by phone- which I suggest doing if you can- we sent the package overnight mail. is awesome and it helps a lot of new people to have a conversation with her.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: RE: New to the GroupTo: infantile_scoliosis Date: Friday, August 28, 2009, 1:57 PM

Thanks Tasha and Heidi,That's a good start for me. I feel like I have done a lot of research on the Early Treatment with EDF using the Mehta Method and am confident that's the direction we need to go. For me, I think I can only process this whole thing one step at a time. I am not sure how to classify Makenna's scoliosis... she has an underlying genetic condition - Horizonatal Gaze Palsy with Progressive Scoliosis (HGPPS). This diagnosis is made through MRI confirmation; there is a cleft on her brain stem. So, we know the scoliosis will be progressive, but I am not sure if hers would be classified as idopathic or congenital. So there is question number 1, I guess!We just did the spine MRI today. And her most recent brain MRI was done in July of this year. And the x-rays were done August 12. So, we have all current films!!! Sounds like that should speed things up.We have already been to a pediatric orthopod. He wanted

to put her in a brace for four months and see if the curve progressed. At that point he was going to recommend casting. I had done my own digging and research on HGPPS and been in contact with researchers in both LA and Boston. The woman in Boston connected me with a doctor in Turkey who has actually treated patients with the condition. It was his feeling that the scoliosis was fairly resistant and progressive, and if the curve was stable now, we should go for casting. I presented this information to our doctor and he agreed. So we are in the process of getting a consultation appointment at Shriners.> > > From: amscales11 <amscales11@ yahoo. com>> Subject: [infantile_scoliosi s] New to the group> To:

infantile_scoliosis @yahoogroups. com> Date: Thursday, August 27, 2009, 10:00 PM> > > > > Hello,> My daughter Makenna has just been diagnosed with progressive scoliosis. She is 2 and 1/2 and we caught it early. She is only at a 20 degree curve. So I am hopeful that it was soon enough. We are in the process of trying to get her in for casting. I just wanted to introduce myself and say what a wonderful support group you all seem to be for one another. > Hopefully we will have a consultation appointment soon. I am gathering information from all of your experiences and trying to put together a list of fairly intelligent questions to ask... any suggestions?> This is all happening really fast, so I feel like I can hardly keep up with the information coming in - let alone keep it in an organized fashion in my brain! The x-ray to confirm the scoliosis was taken on August 12.> >

Amy>

November 1, 2009

Welcome to CAST!

Jenn

Mommy to Cole, 21 months, 3rd cast from Rochester, 18 degrees out of cast down

from 47, chiari malformation

>

> Hello,

>

> My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed

with Scoliosis when he was in the NICU. He was born 2 months early. i just

wanted to say hi and i look forward to talking to everyone.

>

November 1, 2009

HI ,welcome to CAST. How old is your son now? Have they casted him yet, and what hospital are you going to? Sorry about all the questions. Glad you joined the group, you will gain much knowledge from the parents on here and feel free to ask any question at all, someone usually has the answer or probably the same problem you are facing. Good luck. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sun, November 1, 2009 12:16:34 AMSubject: New To the Group

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

November 1, 2009

HI ,welcome to CAST. How old is your son now? Have they casted him yet, and what hospital are you going to? Sorry about all the questions. Glad you joined the group, you will gain much knowledge from the parents on here and feel free to ask any question at all, someone usually has the answer or probably the same problem you are facing. Good luck. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sun, November 1, 2009 12:16:34 AMSubject: New To the Group

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

November 1, 2009

Hi !

Welcome to the group! I just want to tell you that you've come to the right place! I can't tell you how helpful and supportive EVERYONE has been since I joined about a month ago. My son is scheduled for his first consult in Chicago this Wednesday, but we would not have known the direction to take and the questions to ask had it not been for the wonderful guidance of the people I consider my earth angels from this group. You're in good hands with prayers and hugs all around.

Take care,

Chrissy

Subject: New To the GroupTo: infantile_scoliosis Date: Sunday, November 1, 2009, 12:16 AM

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

November 1, 2009

Hi !

Welcome to the group! I just want to tell you that you've come to the right place! I can't tell you how helpful and supportive EVERYONE has been since I joined about a month ago. My son is scheduled for his first consult in Chicago this Wednesday, but we would not have known the direction to take and the questions to ask had it not been for the wonderful guidance of the people I consider my earth angels from this group. You're in good hands with prayers and hugs all around.

Take care,

Chrissy

Subject: New To the GroupTo: infantile_scoliosis Date: Sunday, November 1, 2009, 12:16 AM

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

November 2, 2009

Hi , welcome! So glad you found us. Ask any and all questions you have! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, October 31, 2009 10:16:34 PMSubject: New To the Group

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

November 2, 2009

Hi , welcome! So glad you found us. Ask any and all questions you have! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, October 31, 2009 10:16:34 PMSubject: New To the Group

Hello, My Name Is . i have a 9 month old Son named Thaddeus Who was diagnosed with Scoliosis when he was in the NICU. He was born 2 months early. i just wanted to say hi and i look forward to talking to everyone.

February 7, 2010

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group! Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Sat, February 6, 2010 7:11:54 PMSubject: New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

February 7, 2010

Welcome, !!! I actually have mild pectus excavatum myself. My niece Isadora has hip dysplasia also- she's 3 and may be having a second surgery and full body spica cast soon. It's interesting how these things can sometimes be connected to scoliosis.May I ask why they have to fix the pectus first? My guess is it must be severe. I have seen online it can be surgically corrected. Please ask any and all questions of this great group! Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)To: infantile_scoliosis Sent: Sat, February 6, 2010 7:11:54 PMSubject: New To The Group

Hello to Everyone! My name is , and I am mother of a 2 1/2 year old little girl named Nadya.

My daughter Nadya was born with many health issues, they include hydrocephalus, hyptonia, pectus excavatum,

hip dysplasia, scoliosis, which are just the major issues. Nadya's scoliosis has progressed to 88 degrees and

we are going to try casting as soon as possible. Due to Nadya's pectus excavatum she can't be casted until

she has her pectus corrected, which we are trying to have done in the next couple of weeks. About two

weeks after her pectus is fixed she should be healed enough to have her first cast. We will be seeing

Dr. in Rochester, NY for her casting.

I have read a lot of your emails and I think you all are amazing, and I am glad to know that there are other

parents to talk to who understand. I look forward to speaking to everyone soon.

Sincerely,

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