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  #1  
Old 20th August 2013, 03:46 PM
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tonibunny tonibunny is offline
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Default Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

**This post is for information only and is a work in progress**

Has your infant recently been diagnosed with scoliosis? If so, take a deep breath - we are here to help and guide you to the very best treatment for your child.

Firstly, the most important thing to find out is the type of scoliosis that your baby has. The main types of scoliosis are as follows:

- Congenital Scoliosis (which is caused by malformed vertebrae that happened whilst the baby was developing in utero; malformed verts include hemivertebrae, butterfly shaped vertebrae, and conjoined or fused vertebrae - these are usually visible on x-rays and scans)

- Neuromuscular Scoliosis (which has developed secondary to another condition, such as Cerebral Palsy)

-Idiopathic Scoliosis (which is where there is no known cause for the curve that has developed).

In all cases, your child must be under the care of a spinal specialist surgeon who will oversee their treatment as they grow. Time is of the essence! The sooner your child is assessed and starts treatment, the better. Don't be fobbed off with a long wait for your child to be assessed - their curve could progress rapidly in that time. If you are given an initial appointment in the far future, let us know and we'll help you sort things so your child is seen sooner.

If your infant has Idiopathic Scoliosis, it is of utmost importance that they are seen by a spinal specialist who understands Idiopathic Scoliosis in very young children. We can help you find a suitable consultant for your child. In most cases of scoliosis in infants, the curve is mild and will resolve on its own. However, a very small subset will progress - and for these children, the curve can progress rapidly and cause a great deal of deformity in a short space of time. This can be dangerous and can have long-lasting effects; for instance, large thoracic curves can restrict the growth of the lungs.

Thankfully, there is a method which gives a good indicator of whether an infant is likely to have the resolving, benign type of scoliosis or whether they are at risk of having the progressive type. This method is done by measuring the angle of the ribs to the vertebrae, and is called the RVAD (Rib-Vertebra Angle Difference) and any good scoliosis surgeon who understands scoliosis in infants should be well aware of how to measure it.

If your child's RVAD measures as less than 20 degrees, it is usually safe to employ a policy of "watchful waiting" - ie just keeping a close eye on them. Otherwise, it is IMPERATIVE that your child is given treatment as soon as possible. Do NOT be fobbed off with a "wait and see" approach if you do not know for definite that your child has a low RVAD. The larger the curve when proper treatment starts, the harder it is to manage. EARLY TREATMENT IS VITAL - the earlier the better.

Many surgeons today will place infants into braces, and some will put them into plaster bodycasts. However, there is one method that can actually CURE an infant with progressive-type Infant Idiopathic Scoliosis if it is caught early enough. This method uses a series of casts that are applied using techniques and refinements specifically devised by Dr Min Mehta at the Royal National Orthopaedic Hospital in Stanmore, England, in the late 1970s-1980s. Sadly, there are few surgeons who properly understand the Mehta Casting technique - especially as her research papers are now seen as dated - but work is being done to promote it, there are recent studies that prove its efficacy that have been done in the USA, and we hope that it will become the norm in future.

Standard Casting (known as EDF Casting) alone can help to manage scoliosis in infants, but the Mehta Technique, which improved upon this technique, has been proven to be more effective, and since it was introduced to the USA in the past ten years there are now many children who once faced numerous surgeries who are growing up with normal straight spines. They are "cured"! The lady who helped introduce Mehta's Technique in the USA, Heather Hyatt Montoya, now runs the Infantile Scoliosis Outreach Program, and their website is an excellent source of information regarding this. The website can be found at:

http://www.infantilescoliosis.org

The ISOP website has plenty of info and also success stories which will hopefully be encouraging to many. As well as being an Admin here at SSO, I am now Heather's righthand here in the UK and will do my best to help with any questions that UK based parents have.

Please note that sadly, Mehta Casting is only very effective for Infantile Idiopathic Scoliosis. It not so effective for other types of Infantile Scoliosis, though in some cases it may help to control the curves. However, ALL infants with scoliosis MUST be placed under the care of an experienced scoliosis surgeon as soon as possible, and as mentioned above, here at SSO we will do our bet to help you to find someone suitable if needed. There are all sorts of methods for controlling curves so please don't feel disheartened if your child has a different type of scoliosis.

I grew up with Infantile Idiopathic Scoliosis myself so this cause is dear to my heart. Please feel free to PM me for support at any time,

Toni x
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #2  
Old 22nd November 2013, 01:26 PM
jnt jnt is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Thanks Tonibunny for the information. My son was diagnosed at 15 months with idiopathic scoliosis at 18 deg which grew to 45 deg 3 months later while we were waiting to get into a cast. The cast has kept the curve at 45 deg now 3 years on. I would love to straighten my son without surgery and have desperately sought a way to do this. we do physio 4-5 times a week, schroth method, which I helped to set up in Ireland and hopefully Jake can be put into a brace soon so that we can really work with him, its difficult at the moment when wearing a cast. Its probably impossible to enter the Mehta technique when living in Ireland. Would you have any thoughts on the subject?
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  #3  
Old 22nd November 2013, 06:43 PM
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tonibunny tonibunny is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Hi Jnt,

At ISOP we strongly feel that parent-power can be very very powerful. If you have been having your child cast, take printouts of Min's study "Growth as a corrective force in the Early Treatment of progressive infantile scoliosis," (JBJS 2005, available at the ISOP website) to show their consultant and request that the casts are applied using her recommendations - basically an EDF cast with a mushroom-shaped hole in front and a hole at the back to allow the ribcage to grow and expand evenly. The holes are very important and there aren't many cast technicians who cut them correctly!

Good luck with moving Jake into a brace, and with Schroth

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 24th November 2013, 12:18 PM
jnt jnt is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

I will mention it to my surgeon ,we are back for a cast change on Tuesday. I don't think he will be too pleased with me asking though. he seems to think what he is doing at the moment is the right way and I don't think he would be open to changing especially for a method that he is not familiar with. its a pity that I don't still live in the usa, I lived there for 12 years and the Mehta technique makes sense.
thanks again for the info, I will print out the procedure and bring with me on tuesday
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Old 24th November 2013, 01:37 PM
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tonibunny tonibunny is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

The Mehta Technique was devised by UK surgeon Min Mehta and really, it is proven to permanently correct IIS if you get the child young enough. Please please do all you can to get your child's consultant to take this on board. Regular casts don't do enough! There is very little "change" in the cast application method that is required, but these small refinements make all the difference.
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 24th November 2013, 06:07 PM
jnt jnt is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

again thank, but from experience they hate when they are questioned but I will try. does any surgeon in England practice this technique?
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  #7  
Old 24th November 2013, 10:12 PM
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tonibunny tonibunny is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Consultants can be so arrogant the frustrating thing is that most surgeons think a cast is a cast is a cast, so they just stick the kids into a basic cast and then decide that casting can be ineffective because they're not getting good results.

I am unsure which doctors now take the time to adhere to Min's technique. It is so, so frustrating. There are kids in America growing up with completely straight spines due to proper application of Mehta style EDF casts. In England, I believe your best bet is to see Mr Stewart Tucker as he's not arrogant and will listen if you have something to say. I am working with ISOP to try to get the word out there but due to medical issues of my own - I'm fighting cancer - I'm not able to focus on this at the moment.

Even more frustratingly, the Scoliosis Association UK (SAUK) refuses to help promote Mehta Casting even though they used to do so and despite Min being one of their trustees. They're happy to use her name to promote themselves, but when approached about helping to promote the technique with a campaign, they said to us "oh no, hardly any surgeons do that now, it's seen as old hat". Min is very old and frail now and doesn't have anything to do with SAUK anymore. I met her in the summer and she is distraught and frustrated that so many children are missing the opportunity of having their spines straightened due to the arrogance of ignorant consultants today.

It doesn't help that casts in the UK are applied by cast technicians and not by the surgeons themselves. Min and the US surgeons who she trained would physically derotate the child's spine by hand before applying the cast, rather than using cast frame derotational straps. Most cast techs do not learn about Mehta casting or maybe they would apply the refinements themselves when they are given an IIS infant to cast. The most frustrating thing for me is that I was retraining as an orthoapedic technician myself with hopes to train other cast techs and spread word of the method, but just as I was beginning to be offered work I was diagnosed with cancer. I'm still getting phonecalls offering me work and hope I can get back to it!
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 25th November 2013, 10:11 AM
jnt jnt is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

I am very sorry to hear of your illness. Sometimes life hits so few the hardest. Keep fighting.
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  #9  
Old 26th November 2013, 02:37 AM
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tonibunny tonibunny is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Thanks Jnt. I try not to mention it too much here as it's unrelated to my scoliosis and I prefer to keep supporting others as much as possible.
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #10  
Old 25th March 2014, 01:54 PM
mooneym mooneym is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Hello everyone,

I am based in the Southeast of Ireland and my son ( 7 months old) have been diagnosised with scoliosis curve with COBB score of 26 degree left thoracic lumber. Apparently the RVAD is only 8 degrees. My question is as follows: We saw a General Consultant orthopaedics surgeon yesterday and he told us the above. He thinks it is idiopathic infantile scoliosis. He said he will monitor same and that it appears to be a mild curve.

I have also made an appointment to see an Dr Jacques Noelle ( Crumlin Hospital) privately for a second opinion. He is a consultant Orthopaediac surgeon. I am not sure if he is the expert in Ireland. Has anyones child had treatment under the Consultant? Does anyone know who is the expert consultant in this area. The General Consultant yesterday asked for an xray with my son suspended from the armpits. Is this the best angle to get the xray or does this enlongate the body and possibly put the RVAD out? he also had a xray lying on his back. I would be grateful for any information anyone can give me.

Thanks
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Old 25th March 2014, 02:09 PM
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

Hi there,

As I'm in England I'm afraid I'm not sure about how things are in Ireland. The X-ray taken with your son suspended by his armpits will be used to see how "structural" your son's curve is - it may be very flexible and drop out somewhat under the natural traction of his body when suspended, which will be good news as a child with IIS I used to be suspended by my neck during check-ups, to check on how much my curve seemed to lessen under this natural traction.

It is very difficult to x-ray infants before they are standing, so the combination of lying x-rays and suspended x-rays sounds very sensible.

Toni
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 25th March 2014, 05:34 PM
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Juverna Juverna is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

opps
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Dublin based mam of three. 15 year old daughter had spinal fusion for adolescent idiopathic scoliosis, s shaped (75 degrees) March 2013. 11 year old daughter with mild scoliosis who has recovered from cancer.

Last edited by Juverna; 25th March 2014 at 05:40 PM. Reason: posted wrong place
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Old 25th March 2014, 07:15 PM
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GillyG GillyG is offline
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Default Re: Has your infant child been recently diagnosed with scoliosis? READ THIS FIRST.

We have a list of scoliosis specialist for the UK and Ireland which you can find by following this link:

http://www.scoliosis-support.org/showthread.php?t=7250

There is a Mr J Noel on there who works at Crumlin, the spelling if different but I think it's the same person so he should be in good hands
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