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Are you certain it is mold? Is it fuzzy? 

________________________________

From: <hoffman.aj@...>

kombucha tea

Sent: Thu, November 5, 2009 10:59:59 AM

Subject: Re: Update

 

Hi Leif,

More than likely, you're simply seeing a new kombucha SCOBY forming. Rather than

throwing the batch out immediately, leave it alone. If it really is mold, it

will be incredibly obvious in a few more days.

Try to wait a week before checking, looking at it daily is not a good idea.

- .

>

> Well ive attempted over 30 batches of komucha and so far all of them have

ended up with mold.

....

>Right now i have 10 batches going. I check them daily and as soon as i spot

mold in one i throw it out and start a new one.

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Hi Leif! Maybe I missed something, but if you have no starter tea and no SCOBY,

what you are making is moldy, spoiled tea! Kombucha Tea can't be made without

either a little starter tea (Kombucha) or a SCOBY, preferably both. Did I

misunderstand you?

Kate

>

> Its definitely mold. The liquid smells bad and tastes horribly when sampling.

>

> I have no starter available (kombucha or SCOBY) so im starting from scratch.

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Hi Leif,

I don't see any Kombucha in your mix. You must have Kombucha either in the form

of previously made Kombucha tea or a Kombucha Colony, SCOBY or better yet both,

in order to make Kombucha. You cannot make Kombucha from tea, sugar water and

vinegar.

Could the lack of Kombucha in any form be the problem?

Peace, Love and Harmony,

Bev

>

> Well ive attempted over 30 batches of komucha and so far all of them have

ended up with mold. After trying several Thai brand vinegars and having no luck

i gave in and went the only imported distilled vinegar, heinz vinegar. Using

this things looked brighter with a thin white layer growing on the top of new

batches. I have one batch thats 10 days old but it looks as though its about

ready to develop mold. Click on my profile to see the picture. Right now i have

10 batches going. I check them daily and as soon as i spot mold in one i throw

it out and start a new one. Im trying different combinations with different

proportions using these ingredients: black tea, green tea, white sugar, brown

sugar, and vinegars. Mold develops faster when using brown sugar so im ready to

stop using it. I heard if green tea is used then brown sugar must be used with

it or else it will take a long time to ferment, so im ready to give up on green

tea. Whenever i make a batch without vinegar using just tea and sugar it starts

bubbling like crazy after 2 days and on the 4th or 5th day mold appears. When i

use vinegar a thin white layer appears or the top about 5 days later and mold in

another 5-7 days. I think ive been using too much tea so im starting to use less

amounts when making new batches. I use 140 grams of sugar for 2 litter batches.

Any more is too sweet when taste testing. I notice there are 2 types of white

sugars on the market, regular and refined. The regular has a pleasant fragrance

suggesting that some of the nutrients are still intact. The refined has no

fragrance suggesting that all of the nutrients have been filtered out. I use

refined sugar for now because its cheaper. One idea is using fresh pressed sugar

cane juice which is available where i live.

>

> Leif

>

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You can't make kombucha from scratch, it's not like sourdough starter. You'll

need a kombucha SCOBY or some kombucha liquid, preferably both.

- .

>

> Its definitely mold. The liquid smells bad and tastes horribly when sampling.

>

> I have no starter available (kombucha or SCOBY) so im starting from scratch.

The humidity is fairly high here although it may go down now that the rainy

season is over. The temperature is always above 80 degrees my room where i make

kombucha.

>

> Leif

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>

> Well ive attempted over 30 batches of komucha and so far all of them have

ended up with mold. ... Click on my profile to see the picture. .

>

Leif, where is your profile with the picture? There was no link showing in my

email.

in Texas

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  • 2 weeks later...

Hi Terri,

That's very good news, and that's great advice they're giving you. I

think it's so easy to get into that mode where you keep trying to

improve performance, when you might already be at an optimum level.

I've read about that 80% rule, and that it's Japanese -- something

like " hara hachi bu " . I don't know how you write it. It works for me

if I'm reallly focused, but I think I'm too Western and can't always

achieve that level of mindfulness yet, so I personally need to take

that extra step and document the meal. I know a number of people who

eat that way, and they stay slim. I hope I can reach the point where I

can do it this way too.

Everybody should have their yummy treats!!! You don't have to give up

your beloved Oreos. My favorite treat is that Mexican chocolate that

you use to make hot chocolate. The brand is Ibarra. It comes in these

big, round tablets. You break them into pieces. I don't make the hot

chocolate, but I just eat it like candy. :) I know that one wedge of

that sugary goodness is 110 calories. I budget one in every day

because it makes me soooooo happyyyyyy!

I think physical therapists are amazing. They really can help you

change your life.

On Wed, Nov 25, 2009 at 6:43 AM, Terri Ponce <terri.ponce@...> wrote:

> Touching base…

>

> I've been out of the loop for a while, mostly because I've been crazy at work

and life in general.  Fortunately, I think I can now see the light at the end of

the tunnel.  ;-)

>

> I started PT last week and have been on a stronger NSAID, which seems to be

helping heaps with my back/leg/nerve issue.  The physical therapist is a little

perplexed with me, though, and thinks my symptoms are stemming from my back, but

we're still not sure.  Still, she has me do an elliptical bike for 10 minutes,

then I do stretching (with a yoga strap of all things! - and yes, I've gone out

and bought one for $7 at Target), then I do some work on a stability ball and

then I do additional weight exercises also with the stability ball.  The goal,

as you've probably already guessed, is to strengthen my core.  The thing is, the

PT keeps having to make things more challenging for me, because my core is

already very strong and she says that my flexibility is above average.  But

beyond that, she told me last night that she's also helping me with posture

(which I didn't realize until she said it), which should also (hopefully) help

with the nerve issue.  So far I've been feeling much better, and I'm keeping my

fingers crossed that this was just a passing thing.

>

> But the good news is… I most likely won't have any exercise restrictions once

I'm done with PT!  This is according to both the spine doc and the PT.  Of

course, they both reminded me (and keep reminding me) that I don't have to keep

pushing myself so hard to get results.  They've mentioned often enough that I'm

already in very good shape and that my weight is ideal, so my goal should be to

stay in shape and not necessarily work toward becoming more ripped or just

*more* anything.  They just want me " to keep it up " .  They also keep mentioning

that form is absolutely key, and that I should focus on my back alignment and

posture with respect to the rest of my body as I move, which is one reason why

I'm diving right back into yoga once I'm done with all of this before I venture

out with other workouts.  It's a small thing that I never really paid attention

to, but now realize how critical it is.  And that goes for any exercise I pursue

from here on in.  Hunching, hyperextending, locking knees… whatever it is, it

can affect your spine.  And over the long-term, damage can occur.  Lesson

learned, definitely.

>

> As for all this talk about logging food… I used to do it and hated it.  But,

it taught me about portion control and, as a result, I've become more in tune

with how much I can eat and when.  And I also try to use the 80% rule (I can't

remember which culture uses it - an Asian one, maybe?).  You stop eating once

you feel 80% full.  The reason you do this is because by the time your brain

gets the message that you're full, it's already too late.  How interesting is

that?  I also learned a neat trick from my meditation practice.  A meditator I

was reading about mentioned that you should try carrying over your meditation

into your daily eating.  Slow down, savor the aromas and tastes and sights, and

make each bite a full-blown experience even as it passes down your throat and

into your stomach.  Just a little tidbit I thought I'd share, because I know at

times I have a tendency to rush, and that's all kinds of bad when trying to keep

an eye on eating habits.  Plus, I learned to enjoy my food all the more!

>

> But, and this is a BIG but… I'm never giving up Oreos (I allow myself 2-3 at

night, a few times a week).  And I'm never giving up red wine.  Nuh uh.  Never

gonna happen.  And no, I never have the two together.  I tried it once.  It

tasted really, really bad.

>

> Okay, so excuse the long-winded message and thanks for reading if you've

lasted this long.  I'm just trying play catch-up!

>

> (off to read more posts…)

>

> -Terri-

>

>

>

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

>

>

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  • 1 month later...

I don't know if it is strange or not; I have never been through a divorce, but it sounds very civil to me. Love and blessings, Pat K

update

Hello everyone. I just wanted to let you know what happened in court yesterday and then about today. Also, thanks everyone for your thoughts and prayers. It means a lot.

Yesterday in court, the temporary visitation order is that Jim gets the kids on Fri from 3-6 and Sat from 10-3. His attorney said that right now, he does not have a suitable place for him to keep them overnight. This is just temporary, until the divorce court date which is Jan 24th I believe. Also, before we talked about this, his attorney asked if I would be willing to negotiate? I said yes and she first talked about visitation and setting up a temporary visitation schedule. Then she said that he wants to be able to come to the house the two days a week I am not home from 10-12 to do things around here that need to be done? I said well, why? i have been taking care of these things now. She said because his name is still on the mortgage, and he still has an interest in the house and the upkeep. So, I said ok to Tues and Thurs when I am not here. She also asked if we could change the order from 2 years to 1, and that would likely at least get us through the divorce. I said ok. And the other change was the order being just for me and not the kids now. And she changed it with my permission that he is not to belittle, hurt, fight and say mean things to me, and if he does that will be going against it, and he would be in trouble for it. I said ok. We got all this taken care of, and she then scratched off the physical abuse part of it and said they would just put mental abuse etc on the new order. I asked her why? She said it is easier and I said well, he did abuse me though and she said yes, but i am his attorney and it is my job to defend him, and I did not get this. The Mutual ground advocate that was there with me said she would explain to me in a few minutes. When she did she said it would make it easier for him upstairs in the criminal court with that off of there. I still dont get this, and why should I have done this? UGH!!! I dont know if this was the right thing or wrong thing? If I said no, dont take that off of there, she could not of done it.

I asked if she wanted to call and talk to her dad last night. She said yes, so we called him and he talked to both and . After was finished he gave the phone to me and I talked to Jim just for a few minutes. He said that he would be here at 3 today. It was a little awkward since we had just been in court, didn't talk there and have not talked at all in 3 weeks.

Jim got here today at 3, and Lexie went upstairs right when she seen him pull in the driveway. She does not want to see him at all. He came to the door and I let him in. I had the kids all ready to go. I had s meds ready as well. All that happened was very strange. So, he said that he had to put some things in the garage and he would be back to get the kids in a few minutes. I was wondering what that was about? Then, came and told me dad was shoveling outside. He was by the garage. then, I seen him out the big front window, and he was shoveling the walkway. He was also knocking ice off the gutters with the end of the shovel. I am now wondering why is he doing this. So, in about 10 minutes, he came in and said he had to use the bathroom before they went. He then asked me if Lexie was going to go? I said no, and he said is she going tomorrow, and I said no and he said oh, isnt she here? I said ya, she is upstairs and you could tell this really bothered him. He asked why she was not going to go and I just said she just does not want to go. He said I hope you explained to her why her gifts from everyone were delayed? And I said yes, but you did have the wrong info on how this was suppose to be handled and that his family could talk to me and to her and that I asked the court, Mutual grounds a few times, and also the police oficer/PI and and they said that was not true. Only in the case of it being 3rd party. He said well that is what his attorney told him. I did not say anything else. So then, he said, I bought a new shovel for the house, and he gives me a 12 pack of Coke and says do you want this? Before he left, I gave him s meds and he said well if he gets this at 330 or 4, can you just give it to him now if you dont mind? It was 330. So, I did. What do you make of this? I dont get it!

So, the kids have been with him now 2 times. both times now, texts me and lets me know what is going on there. Of course I never told her to do this, but she just does it. She tells me everything. So, she texts me and tells me mom, dad just said the weirdest thing to grandma , Aunt Fran and Aunt Barb. She said that was messing with grandmas microwave and he kept starting it and then opening and shutting it. And Jim said, he does not understand that your microwave is not like "our" microwave and does not just stop when opened or something like that. This is exactly the way she typed that to me too.

I was having my friend Tucker, her hubby and their child Perrin over tonight for dinner at 630. Perrin is 5 and he has Autism too. When he brought the kids home, Lex was in the kitchen doing dishes and she stayed in there and you could tell Jim was looking around for her. He gave me mine and Lex cards from grandma and said he has her cards and money from his dad, grandma Kay and his moms gift and he will give that to her tomorrow. Then he asked if it would be ok if he picked up the kids tomorrow at 11 instead of 10? I said ok.

So, that is what has happened so far. Some of this stuff is very strange to me.

Stac

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Thanks Pat! I am just not sure!StacieSent via BlackBerry by AT&TFrom: pkuenstler@...Date: Sat, 02 Jan 2010 08:29:24 -0500<autism >Subject: Re: update I don't know if it is strange or not; I have never been through a divorce, but it sounds very civil to me. Love and blessings, Pat K update Hello everyone. I just wanted to let you know what happened in court yesterday and then about today. Also, thanks everyone for your thoughts and prayers. It means a lot. Yesterday in court, the temporary visitation order is that Jim gets the kids on Fri from 3-6 and Sat from 10-3. His attorney said that right now, he does not have a suitable place for him to keep them overnight. This is just temporary, until the divorce court date which is Jan 24th I believe. Also, before we talked about this, his attorney asked if I would be willing to negotiate? I said yes and she first talked about visitation and setting up a temporary visitation schedule. Then she said that he wants to be able to come to the house the two days a week I am not home from 10-12 to do things around here that need to be done? I said well, why? i have been taking care of these things now. She said because his name is still on the mortgage, and he still has an interest in the house and the upkeep. So, I said ok to Tues and Thurs when I am not here. She also asked if we could change the order from 2 years to 1, and that would likely at least get us through the divorce. I said ok. And the other change was the order being just for me and not the kids now. And she changed it with my permission that he is not to belittle, hurt, fight and say mean things to me, and if he does that will be going against it, and he would be in trouble for it. I said ok. We got all this taken care of, and she then scratched off the physical abuse part of it and said they would just put mental abuse etc on the new order. I asked her why? She said it is easier and I said well, he did abuse me though and she said yes, but i am his attorney and it is my job to defend him, and I did not get this. The Mutual ground advocate that was there with me said she would explain to me in a few minutes. When she did she said it would make it easier for him upstairs in the criminal court with that off of there. I still dont get this, and why should I have done this? UGH!!! I dont know if this was the right thing or wrong thing? If I said no, dont take that off of there, she could not of done it. I asked if she wanted to call and talk to her dad last night. She said yes, so we called him and he talked to both and . After was finished he gave the phone to me and I talked to Jim just for a few minutes. He said that he would be here at 3 today. It was a little awkward since we had just been in court, didn't talk there and have not talked at all in 3 weeks. Jim got here today at 3, and Lexie went upstairs right when she seen him pull in the driveway. She does not want to see him at all. He came to the door and I let him in. I had the kids all ready to go. I had s meds ready as well. All that happened was very strange. So, he said that he had to put some things in the garage and he would be back to get the kids in a few minutes. I was wondering what that was about? Then, came and told me dad was shoveling outside. He was by the garage. then, I seen him out the big front window, and he was shoveling the walkway. He was also knocking ice off the gutters with the end of the shovel. I am now wondering why is he doing this. So, in about 10 minutes, he came in and said he had to use the bathroom before they went. He then asked me if Lexie was going to go? I said no, and he said is she going tomorrow, and I said no and he said oh, isnt she here? I said ya, she is upstairs and you could tell this really bothered him. He asked why she was not going to go and I just said she just does not want to go. He said I hope you explained to her why her gifts from everyone were delayed? And I said yes, but you did have the wrong info on how this was suppose to be handled and that his family could talk to me and to her and that I asked the court, Mutual grounds a few times, and also the police oficer/PI and and they said that was not true. Only in the case of it being 3rd party. He said well that is what his attorney told him. I did not say anything else. So then, he said, I bought a new shovel for the house, and he gives me a 12 pack of Coke and says do you want this? Before he left, I gave him s meds and he said well if he gets this at 330 or 4, can you just give it to him now if you dont mind? It was 330. So, I did. What do you make of this? I dont get it! So, the kids have been with him now 2 times. both times now, texts me and lets me know what is going on there. Of course I never told her to do this, but she just does it. She tells me everything. So, she texts me and tells me mom, dad just said the weirdest thing to grandma , Aunt Fran and Aunt Barb. She said that was messing with grandmas microwave and he kept starting it and then opening and shutting it. And Jim said, he does not understand that your microwave is not like "our" microwave and does not just stop when opened or something like that. This is exactly the way she typed that to me too. I was having my friend Tucker, her hubby and their child Perrin over tonight for dinner at 630. Perrin is 5 and he has Autism too. When he brought the kids home, Lex was in the kitchen doing dishes and she stayed in there and you could tell Jim was looking around for her. He gave me mine and Lex cards from grandma and said he has her cards and money from his dad, grandma Kay and his moms gift and he will give that to her tomorrow. Then he asked if it would be ok if he picked up the kids tomorrow at 11 instead of 10? I said ok. So, that is what has happened so far. Some of this stuff is very strange to me. Stac

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  • 7 months later...
Guest guest

Hi Leigh,

We were also at Boston Children's today for our one month checkup. had her first cast on July 2nd. She is doing well so far and the cast will come off Sept 1st for one week. We were excited because it is right before Labor Day weekend and maybe we can sneak in a beach day..=) Its also my birthday and I can't wait to snuggle her...The next cast will go on September 10th.. sees Dr. K and he has been really great. Today was a positive day!!!

mom to 17 months, 53 curve down to 20 with first cast

From: Leigh D <leigh_d1971@...>infantile scoliosis treatment Sent: Wed, August 4, 2010 8:01:12 PMSubject: Re: UPDATE - Boston Appt at Children's with possible new Mehta MD

So, we had our appointment at Boston Children's Hospital today and here's what I got out of that meeting:

The MD has been doing Mehta casting for just under a year there now and has had roughly 10 people fitted with the Mehta style. He studied out in Chicago under Dr. Sturm. He did not have any pictures, diagrams or examples available but he hand drew me what we would anticipate and also explained it as I've seen here - the cast would have a mushroom style cutout in front and then a cutout in rear. It probably would not go over the shoulder. He usually places a brace shirt underneath the cast and the cast closest to the body is made of plaster with an outer layer of fiberglass. He has been doing cast rotations of 2 months in, 1 week out, 2-3 months in, 1 week out, etc. and said to anticipate probably a year of this casting series. X-rays would be done in cast to measure for correction. He does not have a 3D frame but a risser frame that had been adjusted and modified to do the 3D type correction.

So, we had a good visit in so far as the 2 curves have not gotten worse and we have what appears to be an option other than a risser. We are looking at an early September date for the procedure - under general anesthesia for approximately an hour and advised to just plan on the day at the hospital.

Hoping we're on the right track. It sounds promising so crossing fingers...

Thanks all.

Leigh

Mom to Noah, 3.5 years with 2 idiopathic scoliosis curves, 25 and 42 degrees. Fit for first brace at 1 but setbacks after it wasn't resized and changed early enough!

From: NIck Guthe <nickguthe (DOT) com>Subject: Re: [infantile_scoliosi s] Boston Appt at Children's with possible new Mehta MDinfantile scoliosis treatment @groups. comDate: Tuesday, August 3, 2010, 8:37 PM

I lifted this from a post that sent a while ago:

Risser casting and EDF (elongation, derotation, flexion) casting.Scoliosis is a 3-dimensional problem that should be corrected on all 3 planes. The EDF casting method has the ability to elongate the spine through traction, derotate the spine/pelvis, and to improve lordosis and over all body shape/alignment.EDF differs from Risser casting. EDF casts are over the shoulder, with a large mushroom opening on the front to allow for proper chest expansion. On the back, there is a small cutout on the concavity of the curve, not going past the midline. It was found that the spine became more aligned with this cutout than without and that it helped correct rotation. Early treatment w/ EDF is generally over a period of 9-12 months depending on age and child’s specific situation. When the child's Cobb angle is under 10 deg, they are removed from their series of EDF plaster

casts and placed into a removable brace. Early treatment EDF does not alternate with bracing as Risser plaster casting can. It is a solid block of casts to decrease the childs curvature(s) , gently, slowly & permanently. The biggest difference is the aim of treatment- which is cure, opposed to containment. Dr's Cotrel & Morel developed the EDF technique years ago in France and found that using one of these techniques in isolation has it's own drawbacks, yet using all three simultaneously potentializes the advantages of each.(Elongation, Derotation, Flexion).

Hope that helps.

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: leigh_d1971 <leigh_d1971>infantile scoliosis treatment @groups. comSent: Tue, August 3, 2010 3:36:46 PMSubject: [infantile_scoliosi s] Boston Appt at Children's with possible new Mehta MD

Hi everyone,I've posted here a few times about my son Noah who has idiopathic scoliosis. We were being treated a Boston hospital that only does Risser casting. Because they indicated he may need that soon, after making several phone calls we'd found a MD at Children's of Boston that reportedly only recently started doing Mehta. He is not officially on our list and I have some questions for him based upon suggestions and group discussions, i.e. who trained him, does he have pictures of his casts, is his frame the 3D, etc. Does anyone else have questions they think would be helpful for the group to confirm that he is officially doing Mehta and for me if we do in fact have to do our first cast?Thanks a bunch everyone!LeighMom to Noah, 3.5 years with 2 idiopathic scoliosis curves, 25 and 42 degrees. Fit for first brace at 1 but setbacks after it wasn't resized and changed early

enough!

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Hi Leigh,

We were also at Boston Children's today for our one month checkup. had her first cast on July 2nd. She is doing well so far and the cast will come off Sept 1st for one week. We were excited because it is right before Labor Day weekend and maybe we can sneak in a beach day..=) Its also my birthday and I can't wait to snuggle her...The next cast will go on September 10th.. sees Dr. K and he has been really great. Today was a positive day!!!

mom to 17 months, 53 curve down to 20 with first cast

From: Leigh D <leigh_d1971@...>infantile scoliosis treatment Sent: Wed, August 4, 2010 8:01:12 PMSubject: Re: UPDATE - Boston Appt at Children's with possible new Mehta MD

So, we had our appointment at Boston Children's Hospital today and here's what I got out of that meeting:

The MD has been doing Mehta casting for just under a year there now and has had roughly 10 people fitted with the Mehta style. He studied out in Chicago under Dr. Sturm. He did not have any pictures, diagrams or examples available but he hand drew me what we would anticipate and also explained it as I've seen here - the cast would have a mushroom style cutout in front and then a cutout in rear. It probably would not go over the shoulder. He usually places a brace shirt underneath the cast and the cast closest to the body is made of plaster with an outer layer of fiberglass. He has been doing cast rotations of 2 months in, 1 week out, 2-3 months in, 1 week out, etc. and said to anticipate probably a year of this casting series. X-rays would be done in cast to measure for correction. He does not have a 3D frame but a risser frame that had been adjusted and modified to do the 3D type correction.

So, we had a good visit in so far as the 2 curves have not gotten worse and we have what appears to be an option other than a risser. We are looking at an early September date for the procedure - under general anesthesia for approximately an hour and advised to just plan on the day at the hospital.

Hoping we're on the right track. It sounds promising so crossing fingers...

Thanks all.

Leigh

Mom to Noah, 3.5 years with 2 idiopathic scoliosis curves, 25 and 42 degrees. Fit for first brace at 1 but setbacks after it wasn't resized and changed early enough!

From: NIck Guthe <nickguthe (DOT) com>Subject: Re: [infantile_scoliosi s] Boston Appt at Children's with possible new Mehta MDinfantile scoliosis treatment @groups. comDate: Tuesday, August 3, 2010, 8:37 PM

I lifted this from a post that sent a while ago:

Risser casting and EDF (elongation, derotation, flexion) casting.Scoliosis is a 3-dimensional problem that should be corrected on all 3 planes. The EDF casting method has the ability to elongate the spine through traction, derotate the spine/pelvis, and to improve lordosis and over all body shape/alignment.EDF differs from Risser casting. EDF casts are over the shoulder, with a large mushroom opening on the front to allow for proper chest expansion. On the back, there is a small cutout on the concavity of the curve, not going past the midline. It was found that the spine became more aligned with this cutout than without and that it helped correct rotation. Early treatment w/ EDF is generally over a period of 9-12 months depending on age and child’s specific situation. When the child's Cobb angle is under 10 deg, they are removed from their series of EDF plaster

casts and placed into a removable brace. Early treatment EDF does not alternate with bracing as Risser plaster casting can. It is a solid block of casts to decrease the childs curvature(s) , gently, slowly & permanently. The biggest difference is the aim of treatment- which is cure, opposed to containment. Dr's Cotrel & Morel developed the EDF technique years ago in France and found that using one of these techniques in isolation has it's own drawbacks, yet using all three simultaneously potentializes the advantages of each.(Elongation, Derotation, Flexion).

Hope that helps.

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: leigh_d1971 <leigh_d1971>infantile scoliosis treatment @groups. comSent: Tue, August 3, 2010 3:36:46 PMSubject: [infantile_scoliosi s] Boston Appt at Children's with possible new Mehta MD

Hi everyone,I've posted here a few times about my son Noah who has idiopathic scoliosis. We were being treated a Boston hospital that only does Risser casting. Because they indicated he may need that soon, after making several phone calls we'd found a MD at Children's of Boston that reportedly only recently started doing Mehta. He is not officially on our list and I have some questions for him based upon suggestions and group discussions, i.e. who trained him, does he have pictures of his casts, is his frame the 3D, etc. Does anyone else have questions they think would be helpful for the group to confirm that he is officially doing Mehta and for me if we do in fact have to do our first cast?Thanks a bunch everyone!LeighMom to Noah, 3.5 years with 2 idiopathic scoliosis curves, 25 and 42 degrees. Fit for first brace at 1 but setbacks after it wasn't resized and changed early

enough!

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  • 4 weeks later...

Connie,

I'm so sorry. I know you have been dreading this for a long time. Please know

you are all in my prayers. I know how scared you must be feeling right now.

This is a good time to lean on and Shellie who have been thru this with

Liv and Mo. Please keep us posted and you are always welcome to the pity party!

Keep your chin up!

tovi39@... wrote:

>

>So the dreaded 6 month ortho appt happened last week and we have finally come

to the part of the scoli journey that I have been trying to avoid for years.

will have Fusion surgery in October. It is a decision that we have not

taken lightly and it makes me so sad that it has to be done so soon.

will be 12 in December. We have seen 0 growth in a whole year and I finally

realize that yes, the fusion will stop his growth but so does a curve of 110

degrees. We are hoping to start with halo traction but not sure how helpful it

will be at this point.

>I have been avoiding this surgery for a year now. His doc wanted to do it last

year. I am afraid if we wait any longer then it will cause lung problems and

there is no getting better from that. Getting through a major surgery as fusion

would be much more difficult with added lung problems. I am so so sad about this

but I feel it is what needs to be done at this time.

>

>I am officially joining in that pitty party!!

>

>Connie

>

>

>

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Connie,

I am so sorry......I can only imagine how you are feeling right now for your sweet boy. You are such an awesome Mom and have done everything you can to help . Wish I had answers, but wanted you to know I am thinking about you this afternoon. Please keep us updated. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: "tovi39@..." <tovi39@...>infantile scoliosis treatment Sent: Wed, September 1, 2010 4:05:44 PMSubject: update

So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point.

I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time.

I am officially joining in that pitty party!!

Connie

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Connie

I was just thinking about the other day wondering how he was doing. I am sorry that you have to cross this bridge. I can only say that he is a strong, young man with great parents and you are at a wonderful hospital. I am thinking of you and hope that he has much success from the fusion. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: "tovi39@..." <tovi39@...>infantile scoliosis treatment Sent: Wed, September 1, 2010 4:05:44 PMSubject: update

So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point.

I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time.

I am officially joining in that pitty party!!

Connie

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Connie,

You deserve a party! I am so sorry to hear your news and know how difficult this decision must have been for you. You know what's best for and you need to do what your gut is telling you to do. You have already given him another year without surgery and you are basing your decisions on the facts that pertain to your son. I will be praying for both of you.... Stay strong!- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: tovi39@... <tovi39@...>Subject: updateinfantile scoliosis treatment Date: Wednesday, September 1, 2010, 9:05 PM

So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point.

I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time.

I am officially joining in that pitty party!!

Connie

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Connie,This is what we fear for Bex's future, too, but if we have to do it, we will do it, and WILL get through it and come out of the other side and thrive. We will all be here for you every step of the way, is an amazing, incredible boy and you are a wonderful Mother- and a beautiful person. 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: "tovi39@..." <tovi39@...>infantile scoliosis treatment Sent: Wed, September 1, 2010 2:05:44 PMSubject: update

So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point.

I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time.

I am officially joining in that pitty party!!

Connie

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Connie,I am so sorry to hear that has to have surgery! You have to do what is best for your son and I hope that when he has the surgery that it is a speedy recovery. I'll be looking for posts from you on your experience as we will most likely be doing this some time down the road as well. Good luck and keep us posted. You are in my prayers! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "tovi39@..." <tovi39@...>infantile scoliosis treatment Sent: Wed, September 1, 2010 5:05:44 PMSubject: update

So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point.

I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time.

I am officially joining in that pitty party!!

Connie

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Connie,

Many of our kids are facing surgery in the future, so please keep us informed

about your journey. I hope everything turns out alright for your son.

mom to Audrey, 3rd cast, SLC

>

>

> So the dreaded 6 month ortho appt happened last week and we have finally come

to the part of the scoli journey that I have been trying to avoid for years.

will have Fusion surgery in October. It is a decision that we have not

taken lightly and it makes me so sad that it has to be done so soon.

will be 12 in December. We have seen 0 growth in a whole year and I finally

realize that yes, the fusion will stop his growth but so does a curve of 110

degrees. We are hoping to start with halo traction but not sure how helpful it

will be at this point.

> I have been avoiding this surgery for a year now. His doc wanted to do it last

year. I am afraid if we wait any longer then it will cause lung problems and

there is no getting better from that. Getting through a major surgery as fusion

would be much more difficult with added lung problems. I am so so sad about this

but I feel it is what needs to be done at this time.

>

> I am officially joining in that pitty party!!

>

> Connie

>

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Prayers for . Hope that all goes well. Keeley mom to Sent from my BlackBerry® wireless handheldFrom: D <dew.writes@...>Sender: infantile scoliosis treatment Date: Sat, 04 Sep 2010 22:31:52 -0400<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Re: update Praying for .Peace, , mommy to Todd On Sep 2, 2010 6:59 PM, " audreymdawson " <audreymdawson@...> wrote:> Connie,> Many of our kids are facing surgery in the future, so please keep us informed about your journey. I hope everything turns out alright for your son.> > mom to Audrey, 3rd cast, SLC> > >>>> >> So the dreaded 6 month ortho appt happened last week and we have finally come to the part of the scoli journey that I have been trying to avoid for years. will have Fusion surgery in October. It is a decision that we have not taken lightly and it makes me so sad that it has to be done so soon. will be 12 in December. We have seen 0 growth in a whole year and I finally realize that yes, the fusion will stop his growth but so does a curve of 110 degrees. We are hoping to start with halo traction but not sure how helpful it will be at this point. >> I have been avoiding this surgery for a year now. His doc wanted to do it last year. I am afraid if we wait any longer then it will cause lung problems and there is no getting better from that. Getting through a major surgery as fusion would be much more difficult with added lung problems. I am so so sad about this but I feel it is what needs to be done at this time. >> >> I am officially joining in that pitty party!! >> >> Connie>>> >

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I am SOOOO glad!!! UCLA I am sure can do it long distance for you. Just need to

get a good local PCP>

BARBIE

________________________________

From: " cerdaclan@... " <tcerda@...>

Sent: Fri, September 10, 2010 9:02:21 AM

Subject: Update

Just want to update everyone quickly. We were able to resolve the medical mess

this morning in one fail swoop and all is good now. We are returning the

children's care back to the team that has cared for them for the past 6 plus

years and they have openly accepted them back. There has been a great amount of

miscommunication and misrepresentation and we are SO RELIEVED that we have put

all the puzzle pieces together and can now move forward to take the very best

care of our precious daughters.

Terri

mom and both daughters CID

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  • 1 month later...

,

My son has a chiari malformation and had decompression surgery last yr so if you

end up needing chiari help/advice etc. Please ask! My son also has extra fluid

around his brain, not enough to be hydrocephalus or anything but its there.

There is at least one mom if not more on this site who's children have had

tethered cords released. I know about not being patient...I'm the queen! Lol!

Good luck and keep us posted!

jamieboros <jayann_24@...> wrote:

>We saw the neurosurgeon last week regarding 's syrinx. I went in

expecting to hear that it was small and we would just watch it. The MRI report

noted it as " small " , so I felt I had every reason to be optimistic. I left that

appointment feeling a little bit ran over by a bus.

>

>The MRI report said no evidence of cord tether or chiari. The neurosurgeon

disagrees regarding the tether, saying it is borderline and with 's

significant scoli and syrinx, he said a " borderline " tether should not be

ignored. He ordered a brain MRI to look for any underlying issues that could be

causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet

to research that one)We have that MRI this Thursday. The neuro is out of town

next week, so our follow up appt. to see him is 10/27. We will set a surgery

date for the tethered cord then and make a determination on the syrinx based on

the information from the brain MRI.

>

>It took me a few days to adjust to the idea that casting has yet another delay

now that these issues have been brought to light. It's so difficult for me that

it seems like it's taking forever to start treating his scoli. I'm an impatient

person by nature, so to feel helpless in getting him what he needs right this

minute is just plain difficult for me.

>

>I'm feeling a little better this week...well, still concerned but functioning

better. I'm very eager to know the results of the brain MRI....

>

>Some good news to report is 's reflux is showing major signs of

improvement and he is finally gaining some weight! Yay! In addition to that, I'm

seeing little notes of fine motor development, which I love. :)

>

>

>Mama to

>10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

schedule and syrinx plan post MRI - (prior to casting.)

>

>

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Take a BIG breath it will be okay. Just take one step at a time. Docs are

trained to " rule " out other issues. The good news is once they are ruled out you

are done with that and on to step number 512,361 1/2. needs to be in a

safe zone before they can cast him I'm sure. We've had several instances where

the person doing the report sees something completely different than the doc.

Once we actually had to admit Ben for a week because his neurosurgeon was out of

town and the report indicated he had a lesion on his brain. Nothing was wrong.

The hospital was sorta like a mini resort with food 3 times a day and a

playroom and sorta a big pile of B.S. Do u trust your doctor? If you do, try and

be patient. I know it's hard.

Tame

Sent from my iPhone

On Oct 11, 2010, at 9:16 PM, " jamieboros " <jayann_24@...> wrote:

We saw the neurosurgeon last week regarding 's syrinx. I went in expecting

to hear that it was small and we would just watch it. The MRI report noted it as

" small " , so I felt I had every reason to be optimistic. I left that appointment

feeling a little bit ran over by a bus.

The MRI report said no evidence of cord tether or chiari. The neurosurgeon

disagrees regarding the tether, saying it is borderline and with 's

significant scoli and syrinx, he said a " borderline " tether should not be

ignored. He ordered a brain MRI to look for any underlying issues that could be

causing the syrinx, such as fluid around the brain or a chiari zero. (I have yet

to research that one)We have that MRI this Thursday. The neuro is out of town

next week, so our follow up appt. to see him is 10/27. We will set a surgery

date for the tethered cord then and make a determination on the syrinx based on

the information from the brain MRI.

It took me a few days to adjust to the idea that casting has yet another delay

now that these issues have been brought to light. It's so difficult for me that

it seems like it's taking forever to start treating his scoli. I'm an impatient

person by nature, so to feel helpless in getting him what he needs right this

minute is just plain difficult for me.

I'm feeling a little better this week...well, still concerned but functioning

better. I'm very eager to know the results of the brain MRI....

Some good news to report is 's reflux is showing major signs of

improvement and he is finally gaining some weight! Yay! In addition to that, I'm

seeing little notes of fine motor development, which I love. :)

Mama to

10 months - 54* - Pending brain MRI 10/14, pending tethered cord surgery

schedule and syrinx plan post MRI - (prior to casting.)

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

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