lots of questions for appointment tomorrow

[Guest guest]

Hi

A brief recap of our story so far:

My son, Johannes, was diagnosed at 8 months with scoliosis. He is now 19 months. MRI scan and x rays have shown it is idiopathic with no structural problems. His spine is an S shape (picture attached) with top curve about 30-32 degrees (though one consultant said 36 degrees) and the lower one about 26 degrees. There is about 10-12* RVAD and 10* rotation. I've read that the usual RVAD rule (most curves below 20* are the ones that resolve) doesn't apply to S shaped curves, so using the RVAD isn't necessarily helpful in determining whether it's progressive either.

He is being treated at Birmingham Royal Orthopaedic Hosptial (UK) and since June has had "soft" casts applied every 2 weeks (a bandage that hardens after about 2 minutes, so he's wrapped up and then the plasterer applies pressure on the curve until it hardens). His curve has not progressed since June, but it also has made *no* progress (one consultant dragged in from retirement to help the waiting list said it had, but the main consultant my son is under has now said that man was wrong). The current consultant would carry on with this treatment and periodic x rays to check for progression. If it progresses he would then use growth rods.

I have asked for a referral to the Nuffield Orthopaedic Hospital in Oxford for a second opinion with a consultant who does (so I have been told) Mehta casting - however his secretary had never even heard of Mehta casting when I rang to ask, so unless they just call it something different, I don't know whether it really is Mehta casting. Our appointment is tomorrow (Thursday 1 December).

I have so many questions - listed below. Some of these are generic ones about the treatment, some are for the consultant to give information about my son's treatment.

*****Please***** could you 1) let me know if I need to ask anything else or modify any of these and 2) answer any questions if you know the answer!

I would also appreciate some words of encouragement. This is a very lonely journey and others around me seem to think that Mehta casting is very dangerous and stressful. As we don't even know whether Johannes has progressive scoliosis, it feels like we may be barking up the wrong tree. But since the whole point of Early Treatment by EDF is to do this early on, we can't wait for much longer!

Many many thanks

Alison

1. We don't know whether J's scoliosis is progressive (it's currently static at approx 30-32 * - but we don't know whether that is because he's in soft casts). Is Mehta casting appropriate (what I've read is that it's for progressive scoliosis)? 2. Mehta casting involves risks. I am aware that general anaesthetic carries risks, but what exactly? How quantify? How do they weigh up against the benefits?3. The current consultant talked about the risks to the lungs of Mehta casting - on the ISOP message board people talk about leaving gaps at the side to allow lungs to expand - does he use any method for this?4. What exactly is the technique they use? How often is the cast applied? What kind of cast do they use? What is the recovery period? What discomfort would J be in? How does it impact on movement and function? Do we stay overnight? When can I go back to work? What happens in the future - bracing? 5. What are the expectations if we go through Mehta casting? (outlook- best case? probable? worst case? how long continue?)6. What would the aim be - full correction?7. Are there other risks?8. What is his view on life with a 30-32 degree curve if we don't do Mehta and just maintain the current curve?9. [this just came to mind - if it gets worse and we are using the soft casting not Mehta, then the current consultant will use growth rods. But I know nothing about them. Do the growth rods correct a curve or just stop it deteriorating? - more a question for the current hospital not for Oxford]10. What is the size of the casts? How far up? Down? Shape? What made of? Do people wear T-shirts underneath (I've read of this on websites)11. What kind of table and equipment does he have? (websites say this is ***very*** important)12. How much experience? How many children treated? What outcomes?13. How long need to wait before starting if we do say yes to this new type?

14. Are there other options we need to look at?

1 of 1 Photo(s)

[Guest guest]

Great post and excellent points Amber.

HRH

> ,

> I was in your shoes last September & I know how overwhelming it is! You

> are on the right track with your questions & keep them coming you are your

> child's best advocate! I want to ask you first how you felt about the

> quality of Johannes's X rays? It's not an exact science, but techs with

> lots of experience in this area get better pictures. I wasn't ever happy

> with my son's X ray process until we decided to travel to a Mehta casting

> expert. We started out at the local peds orth saying Levi had a 35* S

> shaped curve with a 25 RVAD. I thought really you got that from an X ray

> where my child was screaming & fighting? fast forward to X rays from the

> expert.... 31* C shaped curve with a 10 RVAD & 15-20* rotation. (No ? in

> my mind those X rays were fantastic) We decided to proceed with casting

> even with the reduced RVAD because the risks for waiting where so much

> greater to us then the risk of anesthesia. (Levi like Johannes has

> idiopathic scoli) My son has been living a wonderful life in his 1st cast

> since Oct. 20th. He will get his 2nd cast Dec. 22. Mehta cast life is

> really ok.... I promise! He does everything he did before & is as happy

> as can be. (just a few skin irritants but he can hang in there) Just find

> an EXPERT in Mehta casting. Our local Dr. was willing to cast but he had

> only casted 10 - 15 kids in his whole career, used an old model table, and

> only used fiber glass instead of POP. We decided that since we were able

> we would travel to an expert who does it by the book because we felt we

> only really had one chance at getting this right before the growth window

> closed. (Levi is currently 21 mos) You seem very informed & I'm sure you

> will make the right choice for your family....have you talked with

> about if your doctor is recognized with ISOP as a Mehta trained doctor?

>

>

>> Hi

>> A brief recap of our story so far:

>>

>> My son, Johannes, was diagnosed at 8 months with scoliosis. He is now 19

>> months. MRI scan and x rays have shown it is idiopathic with no

>> structural

>> problems. His spine is an S shape (picture attached) with top curve

>> about

>> 30-32 degrees (though one consultant said 36 degrees) and the lower one

>> about 26 degrees. There is about 10-12* RVAD and 10* rotation. I've read

>> that the usual RVAD rule (most curves below 20* are the ones that

>> resolve)

>> doesn't apply to S shaped curves, so using the RVAD isn't necessarily

>> helpful in determining whether it's progressive either.

>>

>> He is being treated at Birmingham Royal Orthopaedic Hosptial (UK) and

>> since June has had " soft " casts applied every 2 weeks (a bandage that

>> hardens after about 2 minutes, so he's wrapped up and then the plasterer

>> applies pressure on the curve until it hardens). His curve has not

>> progressed since June, but it also has made *no* progress (one

>> consultant

>> dragged in from retirement to help the waiting list said it had, but the

>> main consultant my son is under has now said that man was wrong). The

>> current consultant would carry on with this treatment and periodic x

>> rays

>> to check for progression. If it progresses he would then use growth

>> rods.

>>

>> I have asked for a referral to the Nuffield Orthopaedic Hospital in

>> Oxford

>> for a second opinion with a consultant who does (so I have been told)

>> Mehta casting - however his secretary had never even heard of Mehta

>> casting when I rang to ask, so unless they just call it something

>> different, I don't know whether it really is Mehta casting. Our

>> appointment is tomorrow (Thursday 1 December).

>>

>> I have so many questions - listed below. Some of these are generic ones

>> about the treatment, some are for the consultant to give information

>> about

>> my son's treatment.

>>

>> *****Please***** could you 1) let me know if I need to ask anything else

>> or modify any of these and 2) answer any questions if you know the

>> answer!

>>

>> I would also appreciate some words of encouragement. This is a very

>> lonely

>> journey and others around me seem to think that Mehta casting is very

>> dangerous and stressful. As we don't even know whether Johannes has

>> progressive scoliosis, it feels like we may be barking up the wrong

>> tree.

>> But since the whole point of Early Treatment by EDF is to do this early

>> on, we can't wait for much longer!

>>

>> Many many thanks

>> Alison

>>

>>

>> 1. We don't know whether J's scoliosis is progressive (it's

>> currently

>> static at approx 30-32 * - but we don't know whether that is because

>> he's

>> in soft casts). Is Mehta casting appropriate (what I've read is that

>> it's

>> for progressive scoliosis)?

>>

>> 2. Mehta casting involves risks. I am aware that general anaesthetic

>> carries risks, but what exactly? How quantify? How do they weigh up

>> against the benefits?

>>

>> 3. The current consultant talked about the risks to the lungs of Mehta

>> casting - on the ISOP message board people talk about leaving gaps at

>> the

>> side to allow lungs to expand - does he use any method for this?

>>

>> 4. What exactly is the technique they use? How often is the cast

>> applied?

>> What kind of cast do they use? What is the recovery period? What

>> discomfort would J be in? How does it impact on movement and function?

>> Do

>> we stay overnight? When can I go back to work? What happens in the

>> future

>> - bracing?

>>

>> 5. What are the expectations if we go through Mehta casting? (outlook-

>> best case? probable? worst case? how long continue?)

>>

>> 6. What would the aim be - full correction?

>>

>> 7. Are there other risks?

>>

>> 8. What is his view on life with a 30-32 degree curve if we don't do

>> Mehta

>> and just maintain the current curve?

>>

>> 9. [this just came to mind - if it gets worse and we are using the soft

>> casting not Mehta, then the current consultant will use growth rods. But

>> I

>> know nothing about them. Do the growth rods correct a curve or just stop

>> it deteriorating? - more a question for the current hospital not for

>> Oxford]

>>

>> 10. What is the size of the casts? How far up? Down? Shape? What made

>> of?

>> Do people wear T-shirts underneath (I've read of this on websites)

>>

>> 11. What kind of table and equipment does he have? (websites say this is

>> ***very*** important)

>>

>> 12. How much experience? How many children treated? What outcomes?

>>

>> 13. How long need to wait before starting if we do say yes to this new

>> type?

>>

>> 14. Are there other options we need to look at?

>>

>

>

>

[Guest guest]

Hi ,

You must be truly exhausted...Although, it sounds like you're finally

getting more solid answers and Im glad to hear that Oxford is applying

EDF. My answers are in BOLD.

Is the silver nitrate impregnated undershirt

> necessary in colder climates too - or is it more for those of you who live

> in very hot places? WE'VE FOUND THE SPECIAL SHIRTS TO BE HELPFUL IN ALL

CLIMATES.

He mentioned 'neurotoxicity' with reference to more frequent doses of GA -

> apparently there is research that seems to show lots of GA for young

> children can impinge on brain development. However, they haven't

> substantiated the research yet. But he mentioned it as something to bear

> in mind rather than pushing for casting every 8 weeks.

I ALSO READ A STUDY ON THIS YEARS AGO AND IT CAUSED ME GREAT ANXIETY AS

oLIVIA HAS BEEN ANESTHETIZED APPROX. 25 TIMES. SO FAR, SHE IS DOING

GREAT. sHE IS AT THE TOP OF HER CLASS, HAS A LOT OF COMMON SENSE, AND HAS

A GREAT PERSONALITY. sHE IS SUPER CONFIDENT AND IM SURE HER IQ IS GREATER

THAN MINE! (NO REALLY!) LOL...

>

The growth rods would be lengthened by magnets (Oxford has a licence to

> start using them now). So it'd just be one big op, then going in to a

> clinic where they adjust the rods from outside the body. Still far from

> what we want, but better than repeatedly opening up J's back if we do need

> to go to that. GREAT TO HEAR THAT PED. ORTHOS FROM ALL OVER THE PLANET

ARE EMPLOYING THE MAGNETIC RODS AS THEY DO SEEM LIKE A BETTER OPTION.

aLTHOUGH, THEY ARE NEW AND ALSO COME WITH COMPLICATIONS, JUST LIKE THE

OTHERS...i KNOW A BOY (WITH A VERY RIGID CURVE) THAT HAS THIS TYPE OF

DISTRACTION HARDWARE AND THEY HAVE BROKEN 3 TIMES...iVE HEARD OF OTHERS

THAT HAVE DONE VERY WELL WITH THEM..

>Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the

> consultants always say " her results have never been copied by other

> people " . Yet you are all seeing other hospitals where they get such great

> results. There's such ignorance about what's going on in the States

> here...hER RESULTS ARE BEING COPIED EVERYDAY BY DOCS THAT HAVE BEEN

PROPERLY TRAINED BY HER (OR DOCS TRAINED BY HER). THESE DOCS HAVE

PUBLISHED THEIR OUTSTANDING RESULTS AND THEIR JOURNALS ARE AVAILABLE TO

ALL...PROPER TRAINING CONSISTS OF 1 TO 2 FULL DAYS IN THE O.R. CASTING

ALL DIFFERENT AGES/CURVE TYPES AND UNDERSTANDING THE NECESSARY

PRINCIPLES OF EARLY TREATMENT. I CANT WAIT FOR THE DAY WHEN DOCS

REALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLY

TREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER.

>The consultant yesterday saw the serial casting as a way to control the

> curve, definitely not as a way to correct it (he cited J's age as a factor

> - saying Mehta's patients were younger when they got good correction. That

> makes me mad. If only I'd known I needed to push so hard... I saw J's

> curve at 8 months. But it's taken forever to get through the system...)

> Thank you so much for all your replies. WE HAVE ALL SEEN OUTSTANDING

RESULTS ON OLDER CHILDREN BY DOCS WHO WERE TRAINED PROPERLY AND BELIEVED

IN IT. IVE SEEN CHILDREN OVER 2 YRS OLD WITH CURVES IN THE 80'S BENEFIT

GREATLY WITH MEHTAS EDF. WHILE THEY WERE NOT COMPLETELY CURED, THEIR

CURVES WERE CORRECTED SIGNIFICANTLY AND THEY ARE STILL SURGERY FREE

YEARS LATER..

i HOPE YOU ARE ABLE TO REST A BIT EASIER KNOWING THAT JOHANNES WILL BE EDF

CASTED SOON. FINGERS CROSSED FOR QUICK CASTING DATE! pLEASE KEEP US

POSTED WHEN POSSIBLE.

wARMLY,

hrh

>

> It's late at night, I didn't sleep well last night and I am just going to

> go to bed now rather than reply in detail.

>

> The consultant described a type of casting that is similar to Mehta (using

> the right table, using windows front and back). He casts every 12 weeks

> even at this age(if it gets tight they " bivalve " it at the side he said).

> They use stockinet not t-shirts or knit-rite with silver nitrate (he

> stared at me in astonishment when I mentioned that and then smiled and

> said " is that American? " ). We'll see how J's skin gets on. If necessary,

> I'll push for that too! Is the silver nitrate impregnated undershirt

> necessary in colder climates too - or is it more for those of you who live

> in very hot places?

>

> He mentioned 'neurotoxicity' with reference to more frequent doses of GA -

> apparently there is research that seems to show lots of GA for young

> children can impinge on brain development. However, they haven't

> substantiated the research yet. But he mentioned it as something to bear

> in mind rather than pushing for casting every 8 weeks.

>

> They only see 20 cases of infantile scoliosis per year as a hospital, so

> each of the 4 consultants only has 5 cases. Therefore, although they all

> do casting, they can't have huge experience. (He's been there 3 years and

> did casting at his previous hospital, but I don't know how long he was

> there either).

>

> The growth rods would be lengthened by magnets (Oxford has a licence to

> start using them now). So it'd just be one big op, then going in to a

> clinic where they adjust the rods from outside the body. Still far from

> what we want, but better than repeatedly opening up J's back if we do need

> to go to that.

>

> We are now on the waiting list for Oxford. It might be 2 months or more

> before the pre-op appt and then another month before starting casting. J

> will be 22 months by then. I can't dwell on that - it makes me too

> anxious. I feel I've been pushing for months and months... knowing we need

> to act more quickly, but not getting very far.

>

> One big positive is that J's back looks good in the sense of being

> balanced. Because he has an S shape, his head is above his pelvis and his

> shoulders are straight. That means he has no probs walking etc. However it

> also means my friends and people I talk to don't see J's condition as

> being serious - I think some think I'm exaggerating! - but the consultant

> yesterday said the upper curve was 36* and if it gets 5-10* more then he

> *would* say that growth rods would be the way to go to control it. (I'm

> hoping we can get going with the casting soon enough to avoid that).

>

> - thank you for looking in to alternative hospitals in the UK.

> Stanmore would be quite a trek, and I don't know how long it would take to

> get on their waiting list (that's the problem with the NHS... although I'm

> so grateful we don't have to pay for any of this!). But I am definitely

> interested in hearing more about other hospitals - I feel I need to

> explore what's possible.

>

> Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the

> consultants always say " her results have never been copied by other

> people " . Yet you are all seeing other hospitals where they get such great

> results. There's such ignorance about what's going on in the States

> here...

>

> The consultant yesterday saw the serial casting as a way to control the

> curve, definitely not as a way to correct it (he cited J's age as a factor

> - saying Mehta's patients were younger when they got good correction. That

> makes me mad. If only I'd known I needed to push so hard... I saw J's

> curve at 8 months. But it's taken forever to get through the system...)

>

> Must stop there. I'm so tired.

> Will post again as soon as I can.

> Best wishes

> Alison

>

>

[Guest guest]

Hi Carol,If you are in SLC then your child is being treated with Mehtas EDF.   Here are some differences;EDF casting was developed by 2 French surgeons back in the early 60’s for older scoliosis patients needing pain relief by temporary correction..   EDF was never used as a preventive treatment to permanently resolve the rapidly progressing curves of infants/small children until Mehta decided to apply it Early to her young patients.  She saw firsthand that bracing wasn’t effective for PIS and neither was the “wait and watch†approach followed by invasive, repeated surgeries on underdeveloped spines.  Being the great thinker that she is, she realized that a rapidly growing infants body is quite different from one of an adolescent/adult and to make Early Treatment effective, she needed to specialize the edf technique for infants.  Baby bones are soft and not yet ossified so she developed the widely trimmed, mushroom shaped window (w/ rib flaps) in front and the hole on the concavity side in back to address the correction of rotation.  These edf modifications reduced the risk of chest wall deformities enormously, addressed rotation correction and made cast life comfortable & effective for infants and children with scoliosis. There are also necessary Early Treatment principles to follow in order to make ET effective.  For example, with the original edf/risser casting methods, the patients were older and didn’t have to wear a solid block or series of casts (for many months and even years like infants/small children)…They wore one or two followed by bracing/surgery/halo or whatever their doc prescribed (never cured).  Proper ET principles must be followed in order to make Mehtas Method effective.  There are quite a few ET principles that don’t fall into the category of old fashioned edf/risser principles.  The first being “Early Treatment†(under 2) and harnessing the childs rapid rate of growth to train the young spine to grow straight 3 dimensionally, 2nd a proper ped size EDF frame, 3rd properly trimmed windows, 4th solid block of Mehta casts until the young spine has corrected to its potential, 4th temporary brace, 5th proper xrays, proper cast type (over shoulder or under arm), etc…..Please read all articles on Early Treatment for more detailed info on necessary principles.  These differences make clear the importance of proper terminology.  Odds are that if a family requests a cast from their non Mehta trained ortho, they will most likely get a risser, edf or something else without proper and effective follow through.  If a family requests Early Treatment with Mehtas EDF then the dialogue can run its course and they can decide if the hosp/doc has been trained/experienced and if they feel it would be a good fit. Hope this helps in clarifying the major differences.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of M CarolSent: Sunday, December 04, 2011 5:27 PMinfantile scoliosis treatment Subject: Re: Re: lots of questions for appointment tomorrow Hi ,I am a bit confused by this: I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER I thought an EDF cast was a Mehta cast - how is a Mehta EDF different than a regular EDF? we are treated at SLC, so I assume we are getting a Mehta EDF, but they recently were calling it a derotational cast and now an EDF.Thanks,Carol From: " heather@... " <heather@...>infantile scoliosis treatment Sent: Sunday, December 4, 2011 5:13 AMSubject: Re: Re: lots of questions for appointment tomorrow Hi ,You must be truly exhausted...Although, it sounds like you're finallygetting more solid answers and Im glad to hear that Oxford is applyingEDF. My answers are in BOLD.Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places? WE'VE FOUND THE SPECIAL SHIRTS TO BE HELPFUL IN ALLCLIMATES.He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.I ALSO READ A STUDY ON THIS YEARS AGO AND IT CAUSED ME GREAT ANXIETY ASoLIVIA HAS BEEN ANESTHETIZED APPROX. 25 TIMES. SO FAR, SHE IS DOINGGREAT. sHE IS AT THE TOP OF HER CLASS, HAS A LOT OF COMMON SENSE, AND HASA GREAT PERSONALITY. sHE IS SUPER CONFIDENT AND IM SURE HER IQ IS GREATERTHAN MINE! (NO REALLY!) LOL...>The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that. GREAT TO HEAR THAT PED. ORTHOS FROM ALL OVER THE PLANETARE EMPLOYING THE MAGNETIC RODS AS THEY DO SEEM LIKE A BETTER OPTION. aLTHOUGH, THEY ARE NEW AND ALSO COME WITH COMPLICATIONS, JUST LIKE THEOTHERS...i KNOW A BOY (WITH A VERY RIGID CURVE) THAT HAS THIS TYPE OFDISTRACTION HARDWARE AND THEY HAVE BROKEN 3 TIMES...iVE HEARD OF OTHERSTHAT HAVE DONE VERY WELL WITH THEM..>Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say " her results have never been copied by other> people " . Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...hER RESULTS ARE BEING COPIED EVERYDAY BY DOCS THAT HAVE BEENPROPERLY TRAINED BY HER (OR DOCS TRAINED BY HER). THESE DOCS HAVEPUBLISHED THEIR OUTSTANDING RESULTS AND THEIR JOURNALS ARE AVAILABLE TOALL...PROPER TRAINING CONSISTS OF 1 TO 2 FULL DAYS IN THE O.R. CASTINGALL DIFFERENT AGES/CURVE TYPES AND UNDERSTANDING THE NECESSARYPRINCIPLES OF EARLY TREATMENT. I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER.>The consultant yesterday saw the serial casting as a way to control the> curve, definitely not as a way to correct it (he cited J's age as a factor> - saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)> Thank you so much for all your replies. WE HAVE ALL SEEN OUTSTANDINGRESULTS ON OLDER CHILDREN BY DOCS WHO WERE TRAINED PROPERLY AND BELIEVEDIN IT. IVE SEEN CHILDREN OVER 2 YRS OLD WITH CURVES IN THE 80'S BENEFITGREATLY WITH MEHTAS EDF. WHILE THEY WERE NOT COMPLETELY CURED, THEIRCURVES WERE CORRECTED SIGNIFICANTLY AND THEY ARE STILL SURGERY FREEYEARS LATER..i HOPE YOU ARE ABLE TO REST A BIT EASIER KNOWING THAT JOHANNES WILL BE EDFCASTED SOON. FINGERS CROSSED FOR QUICK CASTING DATE! pLEASE KEEP USPOSTED WHEN POSSIBLE.wARMLY,hrh>> It's late at night, I didn't sleep well last night and I am just going to> go to bed now rather than reply in detail.>> The consultant described a type of casting that is similar to Mehta (using> the right table, using windows front and back). He casts every 12 weeks> even at this age(if it gets tight they " bivalve " it at the side he said).> They use stockinet not t-shirts or knit-rite with silver nitrate (he> stared at me in astonishment when I mentioned that and then smiled and> said " is that American? " ). We'll see how J's skin gets on. If necessary,> I'll push for that too! Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places?>> He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.>> They only see 20 cases of infantile scoliosis per year as a hospital, so> each of the 4 consultants only has 5 cases. Therefore, although they all> do casting, they can't have huge experience. (He's been there 3 years and> did casting at his previous hospital, but I don't know how long he was> there either).>> The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that.>> We are now on the waiting list for Oxford. It might be 2 months or more> before the pre-op appt and then another month before starting casting. J> will be 22 months by then. I can't dwell on that - it makes me too> anxious. I feel I've been pushing for months and months... knowing we need> to act more quickly, but not getting very far.>> One big positive is that J's back looks good in the sense of being> balanced. Because he has an S shape, his head is above his pelvis and his> shoulders are straight. That means he has no probs walking etc. However it> also means my friends and people I talk to don't see J's condition as> being serious - I think some think I'm exaggerating! - but the consultant> yesterday said the upper curve was 36* and if it gets 5-10* more then he> *would* say that growth rods would be the way to go to control it. (I'm> hoping we can get going with the casting soon enough to avoid that).>> - thank you for looking in to alternative hospitals in the UK.> Stanmore would be quite a trek, and I don't know how long it would take to> get on their waiting list (that's the problem with the NHS... although I'm> so grateful we don't have to pay for any of this!). But I am definitely> interested in hearing more about other hospitals - I feel I need to> explore what's possible.>> Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say " her results have never been copied by other> people " . Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...>> The consultant yesterday saw the serial casting as a way to control the> curve, definitely not as a way to correct it (he cited J's age as a factor> - saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)>> Must stop there. I'm so tired.> Will post again as soon as I can.> Best wishes> Alison>>

[Guest guest]

thanks for the explaination!

From: Hyatt <heather@...>infantile scoliosis treatment Sent: Monday, December 5, 2011 10:16 AMSubject: RE: Re: lots of questions for appointment tomorrow

Hi Carol,

If you are in SLC then your child is being treated with Mehtas EDF. Here are some differences;

EDF casting was developed by 2 French surgeons back in the early 60’s for older scoliosis patients needing pain relief by temporary correction.. EDF was never used as a preventive treatment to permanently resolve the rapidly progressing curves of infants/small children until Mehta decided to apply it Early to her young patients. She saw firsthand that bracing wasn’t effective for PIS and neither was the “wait and watch†approach followed by invasive, repeated surgeries on underdeveloped spines. Being the great thinker that she is, she realized that a rapidly growing infants body is quite different from one of an adolescent/adult and to make Early Treatment effective, she needed to specialize the edf technique for infants. Baby bones are soft and not yet ossified so she developed the widely trimmed, mushroom shaped window (w/ rib flaps) in

front and the hole on the concavity side in back to address the correction of rotation. These edf modifications reduced the risk of chest wall deformities enormously, addressed rotation correction and made cast life comfortable & effective for infants and children with scoliosis. There are also necessary Early Treatment principles to follow in order to make ET effective. For example, with the original edf/risser casting methods, the patients were older and didn’t have to wear a solid block or series of casts (for many months and even years like infants/small children)…They wore one or two followed by bracing/surgery/halo or whatever their doc prescribed (never cured). Proper ET principles must be followed in order to make Mehtas Method effective. There are quite a few ET principles that don’t fall into the category of old fashioned edf/risser principles. The first being “Early Treatment†(under 2) and

harnessing the childs rapid rate of growth to train the young spine to grow straight 3 dimensionally, 2nd a proper ped size EDF frame, 3rd properly trimmed windows, 4th solid block of Mehta casts until the young spine has corrected to its potential, 4th temporary brace, 5th proper xrays, proper cast type (over shoulder or under arm), etc…..Please read all articles on Early Treatment for more detailed info on necessary principles.

These differences make clear the importance of proper terminology. Odds are that if a family requests a cast from their non Mehta trained ortho, they will most likely get a risser, edf or something else without proper and effective follow through. If a family requests Early Treatment with Mehtas EDF then the dialogue can run its course and they can decide if the hosp/doc has been trained/experienced and if they feel it would be a good fit.

Hope this helps in clarifying the major differences.

HRH

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of M CarolSent: Sunday, December 04, 2011 5:27 PMinfantile scoliosis treatment Subject: Re: Re: lots of questions for appointment tomorrow

Hi ,

I am a bit confused by this: I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER

I thought an EDF cast was a Mehta cast - how is a Mehta EDF different than a regular EDF?

we are treated at SLC, so I assume we are getting a Mehta EDF, but they recently were calling it a derotational cast and now an EDF.

Thanks,

Carol

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Sunday, December 4, 2011 5:13 AMSubject: Re: Re: lots of questions for appointment tomorrow

Hi ,You must be truly exhausted...Although, it sounds like you're finallygetting more solid answers and Im glad to hear that Oxford is applyingEDF. My answers are in BOLD.Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places? WE'VE FOUND THE SPECIAL SHIRTS TO BE HELPFUL IN ALLCLIMATES.He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.I ALSO READ A STUDY ON THIS YEARS AGO AND IT CAUSED ME GREAT ANXIETY ASoLIVIA

HAS BEEN ANESTHETIZED APPROX. 25 TIMES. SO FAR, SHE IS DOINGGREAT. sHE IS AT THE TOP OF HER CLASS, HAS A LOT OF COMMON SENSE, AND HASA GREAT PERSONALITY. sHE IS SUPER CONFIDENT AND IM SURE HER IQ IS GREATERTHAN MINE! (NO REALLY!) LOL...>The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that. GREAT TO HEAR THAT PED. ORTHOS FROM ALL OVER THE PLANETARE EMPLOYING THE MAGNETIC RODS AS THEY DO SEEM LIKE A BETTER OPTION. aLTHOUGH, THEY ARE NEW AND ALSO COME WITH COMPLICATIONS, JUST LIKE THEOTHERS...i KNOW A BOY (WITH A VERY RIGID CURVE) THAT HAS THIS TYPE OFDISTRACTION HARDWARE AND THEY HAVE BROKEN 3 TIMES...iVE HEARD OF OTHERSTHAT HAVE DONE

VERY WELL WITH THEM..>Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say "her results have never been copied by other> people". Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...hER RESULTS ARE BEING COPIED EVERYDAY BY DOCS THAT HAVE BEENPROPERLY TRAINED BY HER (OR DOCS TRAINED BY HER). THESE DOCS HAVEPUBLISHED THEIR OUTSTANDING RESULTS AND THEIR JOURNALS ARE AVAILABLE TOALL...PROPER TRAINING CONSISTS OF 1 TO 2 FULL DAYS IN THE O.R. CASTINGALL DIFFERENT AGES/CURVE TYPES AND UNDERSTANDING THE NECESSARYPRINCIPLES OF EARLY TREATMENT. I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER.>The consultant yesterday saw the serial casting as a way to

control the> curve, definitely not as a way to correct it (he cited J's age as a factor> - saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)> Thank you so much for all your replies. WE HAVE ALL SEEN OUTSTANDINGRESULTS ON OLDER CHILDREN BY DOCS WHO WERE TRAINED PROPERLY AND BELIEVEDIN IT. IVE SEEN CHILDREN OVER 2 YRS OLD WITH CURVES IN THE 80'S BENEFITGREATLY WITH MEHTAS EDF. WHILE THEY WERE NOT COMPLETELY CURED, THEIRCURVES WERE CORRECTED SIGNIFICANTLY AND THEY ARE STILL SURGERY FREEYEARS LATER..i HOPE YOU ARE ABLE TO REST A BIT EASIER KNOWING THAT JOHANNES WILL BE EDFCASTED SOON. FINGERS CROSSED FOR QUICK CASTING DATE! pLEASE KEEP USPOSTED WHEN POSSIBLE.wARMLY,hrh>> It's late at night, I

didn't sleep well last night and I am just going to> go to bed now rather than reply in detail.>> The consultant described a type of casting that is similar to Mehta (using> the right table, using windows front and back). He casts every 12 weeks> even at this age(if it gets tight they "bivalve" it at the side he said).> They use stockinet not t-shirts or knit-rite with silver nitrate (he> stared at me in astonishment when I mentioned that and then smiled and> said "is that American?"). We'll see how J's skin gets on. If necessary,> I'll push for that too! Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places?>> He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children

can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.>> They only see 20 cases of infantile scoliosis per year as a hospital, so> each of the 4 consultants only has 5 cases. Therefore, although they all> do casting, they can't have huge experience. (He's been there 3 years and> did casting at his previous hospital, but I don't know how long he was> there either).>> The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that.>> We are now on the waiting list for Oxford. It

might be 2 months or more> before the pre-op appt and then another month before starting casting. J> will be 22 months by then. I can't dwell on that - it makes me too> anxious. I feel I've been pushing for months and months... knowing we need> to act more quickly, but not getting very far.>> One big positive is that J's back looks good in the sense of being> balanced. Because he has an S shape, his head is above his pelvis and his> shoulders are straight. That means he has no probs walking etc. However it> also means my friends and people I talk to don't see J's condition as> being serious - I think some think I'm exaggerating! - but the consultant> yesterday said the upper curve was 36* and if it gets 5-10* more then he> *would* say that growth rods would be the way to go to control it. (I'm> hoping we can get going with the casting soon enough to avoid

that).>> - thank you for looking in to alternative hospitals in the UK.> Stanmore would be quite a trek, and I don't know how long it would take to> get on their waiting list (that's the problem with the NHS... although I'm> so grateful we don't have to pay for any of this!). But I am definitely> interested in hearing more about other hospitals - I feel I need to> explore what's possible.>> Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say "her results have never been copied by other> people". Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...>> The consultant yesterday saw the serial casting as a way to control the> curve, definitely not as a way to correct it (he cited J's age as a factor> -

saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)>> Must stop there. I'm so tired.> Will post again as soon as I can.> Best wishes> Alison>>

[Guest guest]

You’re welcome.  Keep the questions coming!HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of M CarolSent: Monday, December 05, 2011 12:43 PMinfantile scoliosis treatment Subject: Re: Re: lots of questions for appointment tomorrow thanks for the explaination! From: Hyatt <heather@...>infantile scoliosis treatment Sent: Monday, December 5, 2011 10:16 AMSubject: RE: Re: lots of questions for appointment tomorrow Hi Carol,If you are in SLC then your child is being treated with Mehtas EDF. Here are some differences;EDF casting was developed by 2 French surgeons back in the early 60’s for older scoliosis patients needing pain relief by temporary correction.. EDF was never used as a preventive treatment to permanently resolve the rapidly progressing curves of infants/small children until Mehta decided to apply it Early to her young patients. She saw firsthand that bracing wasn’t effective for PIS and neither was the “wait and watch†approach followed by invasive, repeated surgeries on underdeveloped spines. Being the great thinker that she is, she realized that a rapidly growing infants body is quite different from one of an adolescent/adult and to make Early Treatment effective, she needed to specialize the edf technique for infants. Baby bones are soft and not yet ossified so she developed the widely trimmed, mushroom shaped window (w/ rib flaps) in front and the hole on the concavity side in back to address the correction of rotation. These edf modifications reduced the risk of chest wall deformities enormously, addressed rotation correction and made cast life comfortable & effective for infants and children with scoliosis. There are also necessary Early Treatment principles to follow in order to make ET effective. For example, with the original edf/risser casting methods, the patients were older and didn’t have to wear a solid block or series of casts (for many months and even years like infants/small children)…They wore one or two followed by bracing/surgery/halo or whatever their doc prescribed (never cured). Proper ET principles must be followed in order to make Mehtas Method effective. There are quite a few ET principles that don’t fall into the category of old fashioned edf/risser principles. The first being “Early Treatment†(under 2) and harnessing the childs rapid rate of growth to train the young spine to grow straight 3 dimensionally, 2nd a proper ped size EDF frame, 3rd properly trimmed windows, 4th solid block of Mehta casts until the young spine has corrected to its potential, 4th temporary brace, 5th proper xrays, proper cast type (over shoulder or under arm), etc…..Please read all articles on Early Treatment for more detailed info on necessary principles. These differences make clear the importance of proper terminology. Odds are that if a family requests a cast from their non Mehta trained ortho, they will most likely get a risser, edf or something else without proper and effective follow through. If a family requests Early Treatment with Mehtas EDF then the dialogue can run its course and they can decide if the hosp/doc has been trained/experienced and if they feel it would be a good fit. Hope this helps in clarifying the major differences.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of M CarolSent: Sunday, December 04, 2011 5:27 PMinfantile scoliosis treatment Subject: Re: Re: lots of questions for appointment tomorrow Hi ,I am a bit confused by this: I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER I thought an EDF cast was a Mehta cast - how is a Mehta EDF different than a regular EDF? we are treated at SLC, so I assume we are getting a Mehta EDF, but they recently were calling it a derotational cast and now an EDF.Thanks,Carol From: " heather@... " <heather@...>infantile scoliosis treatment Sent: Sunday, December 4, 2011 5:13 AMSubject: Re: Re: lots of questions for appointment tomorrow Hi ,You must be truly exhausted...Although, it sounds like you're finallygetting more solid answers and Im glad to hear that Oxford is applyingEDF. My answers are in BOLD.Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places? WE'VE FOUND THE SPECIAL SHIRTS TO BE HELPFUL IN ALLCLIMATES.He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.I ALSO READ A STUDY ON THIS YEARS AGO AND IT CAUSED ME GREAT ANXIETY ASoLIVIA HAS BEEN ANESTHETIZED APPROX. 25 TIMES. SO FAR, SHE IS DOINGGREAT. sHE IS AT THE TOP OF HER CLASS, HAS A LOT OF COMMON SENSE, AND HASA GREAT PERSONALITY. sHE IS SUPER CONFIDENT AND IM SURE HER IQ IS GREATERTHAN MINE! (NO REALLY!) LOL...>The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that. GREAT TO HEAR THAT PED. ORTHOS FROM ALL OVER THE PLANETARE EMPLOYING THE MAGNETIC RODS AS THEY DO SEEM LIKE A BETTER OPTION. aLTHOUGH, THEY ARE NEW AND ALSO COME WITH COMPLICATIONS, JUST LIKE THEOTHERS...i KNOW A BOY (WITH A VERY RIGID CURVE) THAT HAS THIS TYPE OFDISTRACTION HARDWARE AND THEY HAVE BROKEN 3 TIMES...iVE HEARD OF OTHERSTHAT HAVE DONE VERY WELL WITH THEM..>Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say " her results have never been copied by other> people " . Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...hER RESULTS ARE BEING COPIED EVERYDAY BY DOCS THAT HAVE BEENPROPERLY TRAINED BY HER (OR DOCS TRAINED BY HER). THESE DOCS HAVEPUBLISHED THEIR OUTSTANDING RESULTS AND THEIR JOURNALS ARE AVAILABLE TOALL...PROPER TRAINING CONSISTS OF 1 TO 2 FULL DAYS IN THE O.R. CASTINGALL DIFFERENT AGES/CURVE TYPES AND UNDERSTANDING THE NECESSARYPRINCIPLES OF EARLY TREATMENT. I CANT WAIT FOR THE DAY WHEN DOCSREALIZE THAT THIS IS NOT REGULAR EDF OR RISSER CASTING. iTS EARLYTREATMENT W/ EDF FOLLOWING MEHTAS TECHNIQUES TO THE LETTER.>The consultant yesterday saw the serial casting as a way to control the> curve, definitely not as a way to correct it (he cited J's age as a factor> - saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)> Thank you so much for all your replies. WE HAVE ALL SEEN OUTSTANDINGRESULTS ON OLDER CHILDREN BY DOCS WHO WERE TRAINED PROPERLY AND BELIEVEDIN IT. IVE SEEN CHILDREN OVER 2 YRS OLD WITH CURVES IN THE 80'S BENEFITGREATLY WITH MEHTAS EDF. WHILE THEY WERE NOT COMPLETELY CURED, THEIRCURVES WERE CORRECTED SIGNIFICANTLY AND THEY ARE STILL SURGERY FREEYEARS LATER..i HOPE YOU ARE ABLE TO REST A BIT EASIER KNOWING THAT JOHANNES WILL BE EDFCASTED SOON. FINGERS CROSSED FOR QUICK CASTING DATE! pLEASE KEEP USPOSTED WHEN POSSIBLE.wARMLY,hrh>> It's late at night, I didn't sleep well last night and I am just going to> go to bed now rather than reply in detail.>> The consultant described a type of casting that is similar to Mehta (using> the right table, using windows front and back). He casts every 12 weeks> even at this age(if it gets tight they " bivalve " it at the side he said).> They use stockinet not t-shirts or knit-rite with silver nitrate (he> stared at me in astonishment when I mentioned that and then smiled and> said " is that American? " ). We'll see how J's skin gets on. If necessary,> I'll push for that too! Is the silver nitrate impregnated undershirt> necessary in colder climates too - or is it more for those of you who live> in very hot places?>> He mentioned 'neurotoxicity' with reference to more frequent doses of GA -> apparently there is research that seems to show lots of GA for young> children can impinge on brain development. However, they haven't> substantiated the research yet. But he mentioned it as something to bear> in mind rather than pushing for casting every 8 weeks.>> They only see 20 cases of infantile scoliosis per year as a hospital, so> each of the 4 consultants only has 5 cases. Therefore, although they all> do casting, they can't have huge experience. (He's been there 3 years and> did casting at his previous hospital, but I don't know how long he was> there either).>> The growth rods would be lengthened by magnets (Oxford has a licence to> start using them now). So it'd just be one big op, then going in to a> clinic where they adjust the rods from outside the body. Still far from> what we want, but better than repeatedly opening up J's back if we do need> to go to that.>> We are now on the waiting list for Oxford. It might be 2 months or more> before the pre-op appt and then another month before starting casting. J> will be 22 months by then. I can't dwell on that - it makes me too> anxious. I feel I've been pushing for months and months... knowing we need> to act more quickly, but not getting very far.>> One big positive is that J's back looks good in the sense of being> balanced. Because he has an S shape, his head is above his pelvis and his> shoulders are straight. That means he has no probs walking etc. However it> also means my friends and people I talk to don't see J's condition as> being serious - I think some think I'm exaggerating! - but the consultant> yesterday said the upper curve was 36* and if it gets 5-10* more then he> *would* say that growth rods would be the way to go to control it. (I'm> hoping we can get going with the casting soon enough to avoid that).>> - thank you for looking in to alternative hospitals in the UK.> Stanmore would be quite a trek, and I don't know how long it would take to> get on their waiting list (that's the problem with the NHS... although I'm> so grateful we don't have to pay for any of this!). But I am definitely> interested in hearing more about other hospitals - I feel I need to> explore what's possible.>> Whenever I mention Miss Mehta, both in Birmingham and in Oxford, the> consultants always say " her results have never been copied by other> people " . Yet you are all seeing other hospitals where they get such great> results. There's such ignorance about what's going on in the States> here...>> The consultant yesterday saw the serial casting as a way to control the> curve, definitely not as a way to correct it (he cited J's age as a factor> - saying Mehta's patients were younger when they got good correction. That> makes me mad. If only I'd known I needed to push so hard... I saw J's> curve at 8 months. But it's taken forever to get through the system...)>> Must stop there. I'm so tired.> Will post again as soon as I can.> Best wishes> Alison>>