Question

[Guest guest]

Hi ,

<<As you guys talk about the rods my Dr said if Adan

had to have surgery he would prefer the rods over the

VEPTR I asked him why and he said if the shape of the

chest wall of normal they prefer the rods over the

VEPTR

Does that sound like anything you have heard of??>>

It sounds like your doc doesn't understand the use of

the VEPTR device very well. There are MANY more

variables involved in deciding if a patient is a VEPTR

candidate or not, besides the shape of the chestwall.

Does Aden breathe with his chest? or is he an

abdominal breather? If he's not in a cast, you can do

this little exercise to find out. Have him stand in

front of you, facing away from you. Put your hands

around his chest from the back. Gently rest your

hands there for a few seconds. If he breathes with

his chest (as most healthy people do), your hands will

move in and out with each breath. If he's an

abdominal breather, your hands will not move much at

all. (But these kids end up having a great six-pack!

LOL) The ribs in the chest grow and become strong by

the motion of breathing. If the breathing is not

" normal " then the bone structure of the chest doesn't

develop normally, and most these kids have weak bone

structure. This is also a risk for kids who are in

braces for a long term (at an early age).

Any rod placement besides the VEPTR procedure is going

to involve fusion of some kind and much more

invasiveness into the spine itself (and disks, etc).

Adan isn't very old. You want to be able to give him

the strongest and tallest spine possible. Surgery of

any kind too soon is not a good idea. Waiting too

long for surgery (until the spine has curved so

severely that a good correction is not possible) is

not good. Having an ortho who understands all of the

variables is the best deal. Many traditional orthos

didn't look to the future for these kids. They knew

that lung function would be reduced if they did an

early fusion, but they weighed that against having a

severe curve that would be worse than a fused spine.

Now, there is another option (the VEPTR procedure).

Something else for the ortho world to use to help

these kids whenever possible.

I'm sending another post (sorry for the multiple

messages) about the congenital -vs- idiopathic cases

with the VEPTR procedure.

Carmellmom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01),

thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery

5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

[Guest guest]

Carmell - Thanks for clearing up that 'little' query!

So, ISOLA rods are permanenent, like Harringotn rods? - oops, sorry

that's another question - LOL

When Siobhan was first diagnosed with scoliosis, 'growing rods' were

offered as a 'down the road' option, but within a few months, our

Ortho was saying that he'd been to a recent conference, and that

growing rods were now not recommended, in his opinion. It was during

these early discussions about growing rods that I found

Hyatt, and began to look at Ms Mehta's POP casting as an option for

Siobhan.

As for the VEPTR, it's so great that its been approved, and offered

in so many hospitals now. If the little munchkin you are referring

to here in Vancouver is Malcolm, then I know them too! and I

connected last summer.

Thanks for sharing your wealth of knowledge with me et al on the

group.

Jacki

> Hi Jacki,

>

> <<So are the ISOLA rods, the 'growing rods' (or

> " growth rods " ) that are usually referred too?>>

>

> No, the ISOLA rods are a permanent fixation device

> that is placed posteriorly (in the back) of the spine

> to support fusion surgery. The growing rods are very

> different.

>

> <<Our ex Ortho here in Vancouver, that is now doing

> VEPTR (yahee!), was saying that they weren't being

> used as much these days - something to do with

> " complications " .>>

>

> This is my own opinion, based on hearing several

> orthopedists talk about the growing rod -vs- the VEPTR

> procedure. This is not documented fact...

>

> I've heard discussion that many Growing Rod patients

> have successful expansions for the first year or so

> after rod placement. Then, for some reason, their

> spines stop growing. The growth plates and things

> that give your spine the vertical growth doesn't like

> having the adjustments done, and therefore they have

> some patients who develop non-growth complications.

> This defeats the purpose of helping give the spine

> stability to grow. Another complication is that the

> top and bottom part of the rods (two, placed along the

> sides of the spine) are fused into place, and anchored

> with screws. Sometimes the fusion doesn't become

> solid and the end of the device comes loose, which

> potentially can poke through the bone structure of the

> spine. Not good. They can also poke through the skin

> (skin sloughing) which can be dangerous due to

> infection.

>

> The growth rod has its time and place, and for many

> years, it was a procedure that gave many young

> children a chance at having a taller spine and a

> healthier body. With the VEPTR procedure, the entire

> design of the device is so different from the

> traditional growth rods that they can't be compared

> side by side. This is the biggest reason the FDA

> waited so long to approve the VEPTR device - there was

> no other device available to do a controlled study

> with.

>

> Remember, this is just my observation and opinion

> about the subject. I am not a medical professional -

> only a parent.

>

> An aside - I know the Vancouver hospital's first

> patient. He had a longer-than-usual recovery, but

> he's doing FABULOUS now!

>

>

>

> Carmellmom to Kara 18, idiopathic scoliosis, Blake 13, GERD and

Braydon 9, VACTERL, GERD, DGE, Titanium Rib Project patient #137

(dbl implant 8/01), thoracic insufficiency, rib anomalies,

congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty

filum/TC (released 4/99), anal stenosis, chronic constipation,

horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97),

neurogenic bladder, bilateral hip dysplasia, right leg/foot

dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96,

3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-

adnoidectomy and ear tubes (3/98), etc. http://carmellb-

ivil.tripod.com/myfamily/

>

> __________________________________________________

>

[Guest guest]

Hi Jacki

<<So, ISOLA rods are permanenent, like Harringotn

rods?>>

Yep. Just a different design of a similar rod. And,

I'm noticing on other scoliosis boards, many people

are saying they had Harrington rod placement in the

1990s, and since. If that's the case, I sincerely

hope they RUN away from the surgeon who placed them.

Harrington rods were done away with in the 80s (or

before) because of the bad flatback syndrome issues

they were causing. I'm hoping that people are saying

" Harrington " rods, but the surgeon is not actually

using them. I don't think its right for surgeons to

refer to them as something they aren't, even tho

Harrington is the more common/familiar term.

K - see what happens when you ask another question? I

go on and on about nothing... sorry you asked, I'm

sure.

And, yes, it's Malcolm and that I know! I'm so

happy you were able to connect with her. I spoke to

her on the phone shortly after Malcolm's surgery. I'm

glad they are doing well now! Hopefully little

will be able to benefit from the newer

technology. She's got a full plate on her hands.

Take care and big hugs to you! Let me know when you

will be in SLC again - I would LOVE to meet you and

Siobhan.

Carmell

__________________________________________________

[Guest guest]

I too, have read alot about Harrington rods, and also I thought I'd

read that they weren't using them any more - So, maybe people are

doing what I did, and referring to Harrington rods as a " generic "

name for all permanent rods. And no, I'm not (nor ever) sorry for

asking! LOL

Now that Malcolm has led the way for VEPTR here, hopefully

will be a candidate without the long wait that Malcolm had. It was

fun to actually meet , and let the kids hang out.

The Early Treatment Trial Project (ETTP) that is being mentioned on

the group, is in SLC in May, and Siobhan and I are lucky enough to

be coming down for that. Also, we hope to take a 'road trip' with

Siobhan's next actual appointment at Shriner's which will be in the

early summer. We plan to drive down from Vancouver, and visit the

beautiful state of Utah, but haven't looked into it too much just

yet.....

I'm sure we'll meet up one day, hopefully sooner rather than later!

Take care, and enjoy the rest of your day

Jacki

> Hi Jacki

>

> <<So, ISOLA rods are permanenent, like Harringotn

> rods?>>

>

> Yep. Just a different design of a similar rod. And,

> I'm noticing on other scoliosis boards, many people

> are saying they had Harrington rod placement in the

> 1990s, and since. If that's the case, I sincerely

> hope they RUN away from the surgeon who placed them.

> Harrington rods were done away with in the 80s (or

> before) because of the bad flatback syndrome issues

> they were causing. I'm hoping that people are saying

> " Harrington " rods, but the surgeon is not actually

> using them. I don't think its right for surgeons to

> refer to them as something they aren't, even tho

> Harrington is the more common/familiar term.

>

> K - see what happens when you ask another question? I

> go on and on about nothing... sorry you asked, I'm

> sure.

>

> And, yes, it's Malcolm and that I know! I'm so

> happy you were able to connect with her. I spoke to

> her on the phone shortly after Malcolm's surgery. I'm

> glad they are doing well now! Hopefully little

> will be able to benefit from the newer

> technology. She's got a full plate on her hands.

>

> Take care and big hugs to you! Let me know when you

> will be in SLC again - I would LOVE to meet you and

> Siobhan.

>

> Carmell

>

> __________________________________________________

>

[Guest guest]

Hello,

Just wanted to say how much I am looking forward to meeting everyone

at the ETTP. Jacki, hope you don't mind if I ask you some questions

about the VEPTR when we get a chance to talk personally. What a week

that will be! I too have also read of Harrington rods,and thought

they were no longer used. I bet you are right and its just stuck in

peoples minds and is now what they refer to for a number of

different ones. The first specialist we say in St. Louis mentioned

grow rods, but did not give a specific kind. In hindsight I see he

was evasive with most of my questions. It will be interesting to see

what is contained in her medical record copies we are currently

getting for the SLC trip. Till then, take care and thanks for all

the info. already!

Bless your day,

, mom of Eliana

> I too, have read alot about Harrington rods, and also I thought

I'd

> read that they weren't using them any more - So, maybe people are

> doing what I did, and referring to Harrington rods as a " generic "

> name for all permanent rods. And no, I'm not (nor ever) sorry for

> asking! LOL

>

> Now that Malcolm has led the way for VEPTR here, hopefully

> will be a candidate without the long wait that Malcolm had. It was

> fun to actually meet , and let the kids hang out.

>

> The Early Treatment Trial Project (ETTP) that is being mentioned

on

> the group, is in SLC in May, and Siobhan and I are lucky enough to

> be coming down for that. Also, we hope to take a 'road trip' with

> Siobhan's next actual appointment at Shriner's which will be in

the

> early summer. We plan to drive down from Vancouver, and visit the

> beautiful state of Utah, but haven't looked into it too much just

> yet.....

> I'm sure we'll meet up one day, hopefully sooner rather than later!

>

> Take care, and enjoy the rest of your day

>

> Jacki

>

>

> > Hi Jacki

> >

> > <<So, ISOLA rods are permanenent, like Harringotn

> > rods?>>

> >

> > Yep. Just a different design of a similar rod. And,

> > I'm noticing on other scoliosis boards, many people

> > are saying they had Harrington rod placement in the

> > 1990s, and since. If that's the case, I sincerely

> > hope they RUN away from the surgeon who placed them.

> > Harrington rods were done away with in the 80s (or

> > before) because of the bad flatback syndrome issues

> > they were causing. I'm hoping that people are saying

> > " Harrington " rods, but the surgeon is not actually

> > using them. I don't think its right for surgeons to

> > refer to them as something they aren't, even tho

> > Harrington is the more common/familiar term.

> >

> > K - see what happens when you ask another question? I

> > go on and on about nothing... sorry you asked, I'm

> > sure.

> >

> > And, yes, it's Malcolm and that I know! I'm so

> > happy you were able to connect with her. I spoke to

> > her on the phone shortly after Malcolm's surgery. I'm

> > glad they are doing well now! Hopefully little

> > will be able to benefit from the newer

> > technology. She's got a full plate on her hands.

> >

> > Take care and big hugs to you! Let me know when you

> > will be in SLC again - I would LOVE to meet you and

> > Siobhan.

> >

> > Carmell

> >

> > __________________________________________________

> >

[Guest guest]

Hey

I'm really excited to be meeting you, and everyone of our " friends " ,

but I'm really not that knowledgeable about the VEPTR! Everything

I've read indicates that it is great - giving kids a better quality

of life, but I'm honestly no expert!

Carmell is " our resident expert " in TRP, and all things

congenital... And I know of a group like this where all the parents

and kids are VEPTR (or waiting to be). That could be a good place

to 'put out some feelers'.

http://www.veptr.com and a link to join a very active and very

supportive group, for if/when your little Eliana is needing the TRP.

See you soon!

Jacki

> > > Hi Jacki

> > >

> > > <<So, ISOLA rods are permanenent, like Harringotn

> > > rods?>>

> > >

> > > Yep. Just a different design of a similar rod. And,

> > > I'm noticing on other scoliosis boards, many people

> > > are saying they had Harrington rod placement in the

> > > 1990s, and since. If that's the case, I sincerely

> > > hope they RUN away from the surgeon who placed them.

> > > Harrington rods were done away with in the 80s (or

> > > before) because of the bad flatback syndrome issues

> > > they were causing. I'm hoping that people are saying

> > > " Harrington " rods, but the surgeon is not actually

> > > using them. I don't think its right for surgeons to

> > > refer to them as something they aren't, even tho

> > > Harrington is the more common/familiar term.

> > >

> > > K - see what happens when you ask another question? I

> > > go on and on about nothing... sorry you asked, I'm

> > > sure.

> > >

> > > And, yes, it's Malcolm and that I know! I'm so

> > > happy you were able to connect with her. I spoke to

> > > her on the phone shortly after Malcolm's surgery. I'm

> > > glad they are doing well now! Hopefully little

> > > will be able to benefit from the newer

> > > technology. She's got a full plate on her hands.

> > >

> > > Take care and big hugs to you! Let me know when you

> > > will be in SLC again - I would LOVE to meet you and

> > > Siobhan.

> > >

> > > Carmell

> > >

> > > __________________________________________________

> > >

[Guest guest]

Hello Carmell,

Thought I’d give you my two cents on

the ISOLA rod. I am not sure what a

“growing rod” is, but I suspect it is the same thing as an ISOLA

rod, which is not permanent. Zoë’s

ISOLA rods are to remain until she is about 90% of her spine growth at which

time permanent rods and fusion would be the current recommendation. I am also unsure if the ISOLA is a

modified Harrington or not, but have been led to believe by our surgeon that,

in fact, it is a completely different system.

As for the “complications”, you

bet, they happened. Two

dislodgements within months of each other, due to a failed fusion site. We haven’t seen a growth plate

problem yet, but Zoë’s just had her first anniversary with her rods,

so time will tell.

Regards,

Esther Foss

Re:

Re: question

Hi Jacki

<<So, ISOLA rods are permanenent, like

Harringotn

rods?>>

Yep. Just a different design of a similar

rod. And,

I'm noticing on other scoliosis boards, many

people

are saying they had Harrington rod placement in

the

1990s, and since. If that's the case, I

sincerely

hope they RUN away from the surgeon who placed

them.

Harrington rods were done away with in the 80s (or

before) because of the bad flatback syndrome

issues

they were causing. I'm hoping that people

are saying

" Harrington " rods, but the surgeon is

not actually

using them. I don't think its right for

surgeons to

refer to them as something they aren't, even tho

Harrington is the more common/familiar term.

K - see what happens when you ask another

question? I

go on and on about nothing... sorry you asked, I'm

sure.

And, yes, it's Malcolm and that I

know! I'm so

happy you were able to connect with her. I

spoke to

her on the phone shortly after Malcolm's

surgery. I'm

glad they are doing well now! Hopefully little

will be able to benefit from the newer

technology. She's got a full plate on her

hands.

Take care and big hugs to you! Let me know

when you

will be in SLC again - I would LOVE to meet you

and

Siobhan.

Carmell

__________________________________________________

[Guest guest]

<<<Prior to surgery, Zoë had about an 85 degree thoracic curve and about a 55 degree lumbar curve – very ugly. The thoracic curve increased about 20 degrees in six months. Prior to that we had her in a soft TLSO. The rapid curve increase in such a short time was

Hi Esther. Thank you so much for sharing your experiences, you and Zoë have been through so much. In reading this, I realized Sydney's curve is pretty severe as well (70 degree lumbar - I don't know what on thoracic). She is 7, I don't know how old Zoë is, and have not been keeping up here well. The doctor also wants to perform surgery now, (one for the lower back) and then wants to try to wait until Syd is 10 to fuse the top. We would like to see another option of course (which is why we are looking into the Feldenkrais). The cast would be good if she could wear it 24/7, but I am not sure if she can. I have not yet heard of the ISOLA rod, but like I said, our doc didn't give us any other options.

Your daughter sounds beautiful! Sydney also is, you wouldn't even know a thing was wrong with her (well, until you try to talk to her, she does not walk/talk or anything else really). She has very sensitive skin.

Just a little background on Syd, who is now 7, (cerebral palsey, cortical vision impairment, seizure disorder and now scoliosis, which started approximately a year and a half ago) we believe she was birth injured, however, the doctors won't agree with that, so we put her through a battery of tests (for mitochondrial diseases, etc.), she had biopsies, both eye and muscle and many other blood tests, a spinal, and whatever else, but (not to our surprise), all produced negative results. Sydney also has symptoms of many different mitochondrial/genetic diseases, however, we still stick to and believe that she was birth injured, (due to the vacuum, the forceps and the internal monitor and the condition of her head after birth). Apparently scoliosis is just another new condition she has acquired because of this. I hope we haven't waited too long (course we didn't know about it sooner) for the Feldenkrais! I am determined to try it anyway, just to stop the curve from getting much worse.

We live in Southern California (in Hemet). My sister and mom used to live in Coos Bay, Oregon, but it's been years since we've been through that area. Thank you again, and I look forward to talking with you.

Barbara

[Guest guest]

Hello Jacki

Thanks for the link! Although Eliana is not congenital, I will have

to pick Carmell's brain if she's willing. Cant wait to meet you!

Till then, take care

> Hey

>

> I'm really excited to be meeting you, and everyone of

our " friends " ,

> but I'm really not that knowledgeable about the VEPTR! Everything

> I've read indicates that it is great - giving kids a better

quality

> of life, but I'm honestly no expert!

>

> Carmell is " our resident expert " in TRP, and all things

> congenital... And I know of a group like this where all the

parents

> and kids are VEPTR (or waiting to be). That could be a good place

> to 'put out some feelers'.

> http://www.veptr.com and a link to join a very active and very

> supportive group, for if/when your little Eliana is needing the

TRP.

>

> See you soon!

>

> Jacki

>

>

>

> > > > Hi Jacki

> > > >

> > > > <<So, ISOLA rods are permanenent, like Harringotn

> > > > rods?>>

> > > >

> > > > Yep. Just a different design of a similar rod. And,

> > > > I'm noticing on other scoliosis boards, many people

> > > > are saying they had Harrington rod placement in the

> > > > 1990s, and since. If that's the case, I sincerely

> > > > hope they RUN away from the surgeon who placed them.

> > > > Harrington rods were done away with in the 80s (or

> > > > before) because of the bad flatback syndrome issues

> > > > they were causing. I'm hoping that people are saying

> > > > " Harrington " rods, but the surgeon is not actually

> > > > using them. I don't think its right for surgeons to

> > > > refer to them as something they aren't, even tho

> > > > Harrington is the more common/familiar term.

> > > >

> > > > K - see what happens when you ask another question? I

> > > > go on and on about nothing... sorry you asked, I'm

> > > > sure.

> > > >

> > > > And, yes, it's Malcolm and that I know! I'm so

> > > > happy you were able to connect with her. I spoke to

> > > > her on the phone shortly after Malcolm's surgery. I'm

> > > > glad they are doing well now! Hopefully little

> > > > will be able to benefit from the newer

> > > > technology. She's got a full plate on her hands.

> > > >

> > > > Take care and big hugs to you! Let me know when you

> > > > will be in SLC again - I would LOVE to meet you and

> > > > Siobhan.

> > > >

> > > > Carmell

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

<<<I hope you pursue the Feldenkrais Method. The basic purpose of the method is to “rewire†or reorganize the nervous system. It can be immensely helpful for anyone with movement difficulties.

Hi Esther. I have been so busy it's been so hard for me to keep up here, (which I still want to apologize for). Thank you for responding. I am definately going to try for the Feldenkrais. Syd is such a different case, mainly because of her other medical issues, she is very "involved" (meaning she is completely dependent upon me).

Thank you for sharing Zoë's history with me. I know what you mean - about the MD's (sigh). Well, I have only had one that actually listens to me, unfortunately he's not much help with most of her issues (he's her ped). But I think you could be on to something there. Too bad they won't agree. But you know, the ones I have come across go strictly by the book and don't really go out of the realm of "proven" medicines and treatments. And to me, that could close doors for answers we desperately need.

Sydney just now started going to San Diego Children's for her spine, and will probably see a neuro there as well. I'm trying to keep everything at one facility. We started off at Loma , but that was disasterous for us, then we went to UCLA, then EBMP (Epilepsy Brain Mapping), then UCI, but we have left 2 of those places because of her insurance (or lack of it).

Anywho, thanks again for prodding me, I am going to call tomorrow as I have to work (and work seems to be the only place I get any peace - lol.

Barbara

[Guest guest]

Hi Barbara,

I hope you pursue the Feldenkrais

Method.  The basic purpose of the method

is to “rewire” or reorganize the nervous system.  It can be immensely helpful for anyone with

movement difficulties.   

We are fairly certain that Zoë did not

have birth trauma, however, my whole pregnancy was very uncomfortable and Zoë

hardly moved at all in utero.  It was

clear when she was born that something wasn’t right.  The neonatologist thought that she had been

constricted in utero because she had some very weird positioning at birth which

have since self corrected (breech legs, torticollis, hands bent onto forearms,

but not contracted, handlebar clavicles).  She had a muscle biopsy when she was about 2 ½

because an EMG indicated muscle function problems (but not her nerves).  Her biopsy did indicate a non-specific muscle

problem (varying muscle fiber sizes); non-specific because it doesn’t fall

into any known category of muscle disorder. 

The connective tissue hypothesis is very convincing, but there are not

genetic tests for all types. 

Zoë’s geneticist has asked at length

about our family history.  No one that I

know of has all the manifestations that Zoë has, although many family members

have one or two matching symptoms.  For

example, I was a late walker at 2 years of age.  One of my sisters has a failed ankle (foot

collapses onto the inside of the ankle), but not both like Zoë.  Another family member had severe muscle

weakness, but in her mid 60’s.  And

another has hyper-extensive joints and her brother looks to me like he has

depressed muscle tone.   Most MD’s think this is all coincidental.  But I say, if I told them I have three family

members with breast cancer or heart disease or diabetes, they’d

immediately lump our family into a high risk group for those conditions.  Anyway, I’ve got a lot a family genealogy

to investigate this summer because science hasn’t provided an answer yet.

Zoë’s cognitive function has not

been impaired, at least, I don’t think so.  Her verbal skills are unusually good, she

thinks quickly on her feet, and is unusually skilled in understanding cause and

effect and lengthily processes.  Her

comprehension of physical orientation, say guessing distances or remembering

how to get from one place to another, is also very good.  That’s a weird one since she has missed

out on a lot of physical exploration. 

Zoë just turned 5 last month.  She has had her ISOLA rods for one year.

Could you please remind me where you take Sydney for her medical care? 

It’s a difficult task trying to care

of a child AND trying to determine the root cause of their difficulty AND

trying to find the right treatment AND trying to have a sane life.  Just keep plugging away.  I continuously remind myself that Zoë isn’t

her scoliosis or her low muscle tone or any other of her problems, she’

just Zoë.  That helps me a lot.

Regards,

Esther

Re:

question

<<<Prior to surgery, Zoë had about an 85 degree thoracic curve

and about a 55 degree lumbar curve – very ugly.  The thoracic curve increased about 20 degrees

in six months.  Prior to that we had her

in a soft TLSO.  The rapid curve increase

in such a short time was

Hi Esther. Thank

you so much for sharing your experiences, you and Zoë have

been through so much. In reading this, I realized Sydney's curve is

pretty severe as well (70 degree lumbar - I don't know what on thoracic).

She is 7, I don't know how old Zoë is, and have not been keeping up here

well. The doctor also wants to perform surgery now, (one for the lower

back) and then wants to try to wait until Syd is 10 to fuse the top. We

would like to see another option of course (which is why we are looking into

the Feldenkrais). The cast would be good if she could wear it 24/7, but I

am not sure if she can. I have not yet heard of the ISOLA rod, but like I

said, our doc didn't give us any other options.

Your daughter sounds

beautiful! Sydney also is, you wouldn't even know a thing was wrong with

her (well, until you try to talk to her, she does not walk/talk or anything

else really). She has very sensitive skin.

Just a little background

on Syd, who is now 7, (cerebral palsey, cortical vision impairment, seizure

disorder and now scoliosis, which started approximately a year and a half ago)

we believe she was birth injured, however, the doctors won't agree with that,

so we put her through a battery of tests (for mitochondrial diseases, etc.),

she had biopsies, both eye and muscle and many other blood tests, a spinal, and

whatever else, but (not to our surprise), all produced negative results.

Sydney also has symptoms of many different mitochondrial/genetic

diseases, however, we still stick to and believe that she was birth injured,

(due to the vacuum, the forceps and the internal monitor and the condition of

her head after birth). Apparently scoliosis is just another new condition

she has acquired because of this. I hope we haven't waited too long

(course we didn't know about it sooner) for the Feldenkrais! I am

determined to try it anyway, just to stop the curve from getting much worse.

We live in Southern

California (in Hemet). My sister and mom used to live in Coos Bay,

Oregon, but it's been years since we've been through that area. Thank you

again, and I look forward to talking with you.

Barbara

[Guest guest]

<< Let’s keep in touch. I’ll be off line for 2 weeks while I’m out of

town

so I’ll try to catch up with you after the 17th. I will see

Beringer, the Feldenkrais practitioner I mentioned before, while I’m out of

town,

so I’ll see if she has any local recommendations for you besides herself. >>

Thank you Esther, that would be great. I did call and left a

message (at her SD number). I think I will just wait for her to return the call

as

she is at Berkley right now but will be back in a few days.

Barbara

[Guest guest]

Let’s keep in touch.  I’ll be off line for 2 weeks while I’m out of

town so I’ll try to catch up with you after the 17th.  I will see Beringer,

the Feldenkrais practitioner I mentioned before,

while I’m out of town, so I’ll see if she has any local recommendations for you

besides herself.

Take care,

Esther

Re:

question

<<<I hope you pursue the Feldenkrais Method.  The basic purpose of the method is to

“rewire” or reorganize the nervous system. 

It can be immensely helpful for anyone with movement difficulties.  

Hi Esther.   I have been so busy it's been so hard for me

to keep up here, (which I still want to apologize for).  Thank you for responding.  I am definately going to try for the

Feldenkrais.  Syd is such a different

case, mainly because of her other medical issues, she is very

" involved " (meaning she is completely dependent upon me).

Thank you for sharing

Zoë's history with me.  I know what you

mean - about the MD's (sigh).  Well, I

have only had one that actually listens to me, unfortunately he's not much help

with most of her issues (he's her ped). 

But I think you could be on to something there.   Too bad they won't agree.  But you know, the ones I have come across go

strictly by the book and don't really go out of the realm of " proven "

medicines and treatments.  And to me,

that could close doors for answers we desperately need.  

Sydney just now started

going to San Diego Children's for her spine, and will probably see a neuro

there as well.  I'm trying to keep

everything at one facility.  We started

off at Loma , but that was disasterous for us, then we went to UCLA, then

EBMP (Epilepsy Brain Mapping), then UCI, but we have left 2 of those places

because of her insurance (or lack of it).

Anywho, thanks again for

prodding me, I am going to call tomorrow as I have to work (and work seems to

be the only place I get any peace - lol.

Barbara

[Guest guest]

I have look hi and low also and could not find it. Bob williams was the one that

i was looking for but i think that he is now with kombucha. com

pjoly@... wrote:what happened to the old kt website? Been all over trying

to find it.

Looking for info Guenther etc

[Guest guest]

Dear Lavelle ,

On 11 May 05 at 20:04 o'clock redgoose16@... (Lavelle ) wrote

> Looking for info Guenther etc

My Website is http://www.kombu.de/

Best wishes and kindest regards from Germany

Günther W. FRank

--

* Guenther W. * frank@...

* http://www.kombu.de/ (Kombucha Journal)

[Guest guest]

Bob passed away last year. Bev Ferguson, our moderator, maintains

his site at: http://w3.trib.com/~kombu/index.shtml

Re: question

>I have look hi and low also and could not find it. Bob williams was the one

>that i was looking for but i think that he is now with kombucha. com

>

> pjoly@... wrote:what happened to the old kt website? Been all over

> trying to find it.

> Looking for info Guenther etc

>

>

>

[Guest guest]

Thank you for the information. I am sorry to hear about bob williams. I have not

been activy since 2002. Thank you

CM Ross <cmross@...> wrote:Bob passed away last year. Bev

Ferguson, our moderator, maintains

his site at: http://w3.trib.com/~kombu/index.shtml

Re: question

>I have look hi and low also and could not find it. Bob williams was the one

>that i was looking for but i think that he is now with kombucha. com

>

> pjoly@... wrote:what happened to the old kt website? Been all over

> trying to find it.

> Looking for info Guenther etc

>

>

>

[Guest guest]

you know, I've been thinking that maybe an important factor is the cover

you use also. I've been using a paper towel, but I think I'm going to

search for a more breathable material (cheesecloth?).

If mold is everywhere in the air then I guess it doesn't matter how good

your covering is at stopping the mold because you probably have mold

spores in the brew before applying the cover.

And mold always likes damp environments, so if the mold spores are

sitting in the brew and the cover restricts airflow too much then I'm

thinking that this would trap more mositure inside the airpocket area,

making ideal conditions for mold to grow.

What do you guys think? I'm thinking that it is probably best just to

get a covering that is as porous as possible, provided that it keeps the

flies out.

What would be the best for this? Cheesecloth?

It's starting to get warmer here, so I suspect that my mould problems

will even get worse (since I live in an old, mouldy apartment). So I

want to ensure I'm doing everything I can to prevent mould. Mould has

even struck some of my kombucha that used liberal amounts of acidic starter.

michael.

CM Ross wrote:

>Hello,

>

>There is a serious mold problem in my apt. Do I need to add more white vinegar,

or do you think the brew is okay as it is going now?

>

>A few weeks ago, I received a very small start, just a half-cup. Then I made a

third of a gallon of kombucha by adding a little over a quart of water, 1/4 cup

of distilled white vinegar, 1/3 cup of sugar, 3 teabags, and the start.

>

>The brew formed nicely, bubbles well and tastes good. This morning I made more

tea by using 2 Bigelow Earl Grey Decaffeinated teabags (which makes the

equivalent of 4 cups of tea), 2/3 cup of white sugar, and 2 quarts of water, let

cool, and added to the brew.

>

>

>Thanks,

>

>

>

[Guest guest]

For what its worth, I use a cloth baby diaper to cover mine with and haven't

had any problems.

Chris

Re: Question

you know, I've been thinking that maybe an important factor is the cover

you use also. I've been using a paper towel, but I think I'm going to

search for a more breathable material (cheesecloth?).

If mold is everywhere in the air then I guess it doesn't matter how good

your covering is at stopping the mold because you probably have mold

spores in the brew before applying the cover.

And mold always likes damp environments, so if the mold spores are

sitting in the brew and the cover restricts airflow too much then I'm

thinking that this would trap more mositure inside the airpocket area,

making ideal conditions for mold to grow.

What do you guys think? I'm thinking that it is probably best just to

get a covering that is as porous as possible, provided that it keeps the

flies out.

What would be the best for this? Cheesecloth?

It's starting to get warmer here, so I suspect that my mould problems

will even get worse (since I live in an old, mouldy apartment). So I

want to ensure I'm doing everything I can to prevent mould. Mould has

even struck some of my kombucha that used liberal amounts of acidic

starter.

michael.

CM Ross wrote:

>Hello,

>

>There is a serious mold problem in my apt. Do I need to add more white

vinegar, or do you think the brew is okay as it is going now?

>

>A few weeks ago, I received a very small start, just a half-cup. Then I

made a third of a gallon of kombucha by adding a little over a quart of

water, 1/4 cup of distilled white vinegar, 1/3 cup of sugar, 3 teabags, and

the start.

>

>The brew formed nicely, bubbles well and tastes good. This morning I made

more tea by using 2 Bigelow Earl Grey Decaffeinated teabags (which makes the

equivalent of 4 cups of tea), 2/3 cup of white sugar, and 2 quarts of water,

let cool, and added to the brew.

>

>

>Thanks,

>

>

>

[Guest guest]

I have been using floursack dish towels. They are a wonderful

thickness of cotton without the holes of cheesecloth. You can even cut

them down and use a rubber band, making several covers from one towel.

mare

[Guest guest]

In message <d68bhd+6je8eGroups> you wrote:

>

> I have been using floursack dish towels. They are a wonderful

> thickness of cotton without the holes of cheesecloth. You can even cut

> them down and use a rubber band, making several covers from one towel.

Yes, that sounds an excellent idea, together with also using towelly cloth

like a nappy/diaper ;-) I use cotton towelling which is probably similar

to floursack dish towels?

Having some quite big brewing buckets even the largest rubbers were

getting quite to pinging stage so.... I started using strong elastic cut

to the right length, and I also use the cut off bits of the cuffs of old

rubbergloves that have developed holes in fingers. These are very

strong indeed, stretch very well but are very firm and my favourites.

--

+---------------------------------------------------------------+

Minstrel@...

www.therpc.f9.co.uk

+---------------------------------------------------------------+

JOY comes by putting Jesus first, Others second, and Yourself last.

[Guest guest]

In a message dated 5/15/2005 11:16:31 AM Pacific Standard Time,

ycomp@... writes:

you know, I've been thinking that maybe an important factor is the cover

you use also. I've been using a paper towel, but I think I'm going to

search for a more breathable material (cheesecloth?).

Cheesecloth is excellent but a new men's white handkerchief is fabulous and

cheep too!

May The Great and Wise Wolf Guide your Path, And May He protect You

Always....Myrna

[Guest guest]

can I buy this kind of stuff at walmart? Or where should I look?

bezbonoui wrote:

>I have been using floursack dish towels. They are a wonderful

>thickness of cotton without the holes of cheesecloth. You can even cut

>them down and use a rubber band, making several covers from one towel.

>

>

>mare

>

>

>

>

>

>

[Guest guest]

Hello

How wonderfully creative you are! Good show as they say...

May The Great and Wise Wolf Guide your Path, And May He protect You

Always....Myrna

[Guest guest]

>

> >I have been using floursack dish towels. They are a wonderful

> >thickness of cotton without the holes of cheesecloth. You can even

cut

> >them down and use a rubber band, making several covers from one

towel.

> >

> >

> >mare

Yes indeedy, you can go to Walmart if you want, and go to the dish

towel section, they should be right there in a pkg. In fact, they are

the most inexpensive type of dish towel around, my grandma used them

and they are nice, absorbent cotton. Get the biggest ones you can and

cut them up. Also many grocery stores carry them.

mare