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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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Old 22nd November 2013, 01:26 PM
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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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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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  #6  
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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