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Williams
13th March 2005, 01:13 AM
HI I am the father of Emmeline aged 6years and 11 months. She was diagnosed with infantile idiopatic scoliosis at 18 months of age. Emme's curve has now progressed to 50 degrees +. At first she had to wear a plaster cast and then a brace. However because the curve has gone past 50 deg' we have to make a desision bettween putting her back into plaster casts or alowing surgery to insert Growth Rods which will be adjusted every 3 months or so to compensate for growth. Has anyone been through this or is going through this as we would welcome any advise as we are seeing Emme's consultant on the 1st of April and we are finding it very difficult to find information on this type of treatment the consultant can'nt give us any comparisons as not enough of this proceedure has been caried out as yet. Please help Dave Williams.

jfkimberly
13th March 2005, 03:21 AM
Hi Dave,

Scoliosis in a growing child is so unpredictable. My opinion is that if you've seen progression with the brace, perhaps it's time for more agressive treatment... and I, personally, don't think a cast is more agressive than a brace. But at the same time, do anything to delay a fusion until her spine is a mature length. The growth rods sound like a great alternative-to-fusion option. Looking at my own case, if that had been an option for my parents, I would thank them today for taking it (no matter how difficult the treatment was for me then).

How tall is she? Has she had a pulmonary workup yet? Do they know her lung capacity? Does she have rotation with her curve?

(sorry for all the questions... I get a bit emotionally-involved when I hear about the younger kids)

Amazed Jean
13th March 2005, 04:37 AM
Dave, We may not have all the answers for you but I guarantee we can be here to listen and to cheer you on. We have people from way young represented by parents and we have relics like me (I'm 53). Lots of people with lots of backgrounds and lots of curves and lots of doctors and hospitals represented. Since you are a parent I just start out by welcoming you to SSO. We are an assortment! I also want to say right now that I feel like parents have to be brave and strong through this stuff you and your child are going through. My other pet thing to say is : Take Notes. Get a notebook and write down stuff when you think of it. Take to your doctor's appointments. Write down where you have xrays done and when and the findings in them. Doctors or nurses can usually be coerced into giving you copies of what the doctor puts in your official record. Keep copies of anything you can. I have 40 years of xrays finally! They weren't easy to get after the fact, but they tell a story.I see Kim has already responded - she's that adorable baby picture used as her avatar. She also has had scoliosis since infancy. She will be a great source but we have lots more. Hang in there, and we are here for you.

sins
13th March 2005, 09:57 AM
I would definitely opt for growing rods.When I was her age I was put in a milwaukee brace and it failed gloriously.Sealy and some of the american mothers are well clued into these newer treatments.
I've read some info about the rods and there have been some minor problems with them such as rods working loose but I believe that they're effective enough for many children.
Who's your consultant?
Some questions for the doctor?
How long will it delay fusion for?
After the maximum number of adjustments, can new rods be fited?
Can she be braced following the growth rod treatment?
It's a tough thing to deal with, especially as it's a surgical procedure, but if the brace isn't holding the curve, you really need to try something more aggressive.
http://www.spineuniverse.com/displayarticl...rticle2307.html (http://www.spineuniverse.com/displayarticle.php/article2307.html)


Sins

tonibunny
13th March 2005, 02:19 PM
Hi William,

I'm nearly 30, and was diagnosed with a double curve of about 62/40 degrees at six months old. I wore plaster casts and Milwaukee braces throughout my childhood until I was ten, when I had my first surgery to correct my upper curve. The casts and braces managed to hold the curves in pretty much the same position right up until then, with a deterioration of only about ten degrees over ten years.

Has Emmeline's curve deteriorated rapidly? If so, I would certainly consider the growth rods. Preventing the curve from getting worse is the key thing here - even if she had a 90 degree curve, if it was remaining stable, you'd be able to put off surgery to give her more time to grow. But as soon as a curve starts to rapidly progress, you're likely to be advised to have surgery.

The great thing about these growth rods is that obviously, the child isn't stuck with a permanently shortened torso - which was the main cause of restrictive lung problems for children operated upon at a very young age.

Sealy
13th March 2005, 05:03 PM
Dave,

It's easy to get lulled into a false sense of security with surgery. I've been on both sides of the fence with my daughter. She originally had a sixty eight degree curve at 18 months and now at four years and five months her curve is 10 degrees, thanks in large measure to growth and serial casting. I consider myself pretty lucky, not everyone has had such great results. It's easy to sit here and preach the virtues of bracing and casting when it's working. When my daughter's curve was severe, surgery was a very real possibility. We were very lucky to have an orthopedic doctor who was INTENT on delaying surgery for as long as possible. At the time, I didn't realize the implications of surgery on such a young child. I believed that surgery was a cure - I was wrong.

There are a few things in your favour - your daughter's age and the fact that your doctor has mentioned casting as a method to delay surgery. At six, your daughter should not be growing that much ( famous last words !!! ) I would do everything within my power to delay surgery for as long as possible PROVIDED that the curve can be maintained at a reasonable level. Have you looked into the titanium rib ? Its very similar to growth rods, however, the device is anchored to the ribs rather than the vertebrae. I've come across a few articles on growth rods and juvenile scoliosis which I thought I'd share with you. I hope these articles will help you in making the best decision for your daughter.

Severe Infantile Scoliosis Treated with Repetitive Distractions
Followed by Definitive Arthrodesis
Carlos Alberto Tello, M.D.
Associate Professor of Pediatric Orthopedics
University of Buenos Aires

Ernesto Bersusky, M.D.
Hospital de Pediatría Garrahan
Buenos Aires, Argentina

Alejandra Francheri, M.D.
Hospital de Pediatría Garrahan
Buenos Aires, Argentina

et al


The purpose was to evaluate patients with severe infantile scoliosis
treated in their childhood with repetitive distractions and followed
at a later age by definitive spinal fusion.

Fifty-six patients with severe scoliosis were treated with repetitive
distractions and 38 of them had reached the age for performing
definitive correction and fusion.

Twenty males and 18 females presented different etiologies: 12
congenital, 8 neuromuscular, 3 neurofibromatosis, 2 idiopathic and 13
miscellaneous.

The average age when starting the program of consecutive distractions
was 7+6 and at the time of performing the posterior fusion was 13+4.
All these patients were treated with Harrington rods for the
repetitive distraction program. There were a mean of 3,7 distractions
for patient with a mean break of 1+1 between them. During definitive
correction in 13 of them anterior fusion was performed as well. In
all of them posterior instrumented fusion with different implants
along the time were performed. The follow-up of the definitive
correction was 2+6. In scoliosis the mean angular value (MAV) preop
was 78º, previous to the final arthrodesis was 75º and after final
correction was 54º. In thoracic kyphosis the MAV was 51º, 43º and 45º
respectively while considering lumbar lordosis the MAV was 32º, 23º
and 30º also respectively.

Complications in the period of distractions were: 21 infections, 13
broken rods, 19 dislodgement of the hooks and 8 cases of supra-
arthrodesis kyphosis. Complications regarding the final correction
and fusion were: 4 infections, 2 kyphosis above and 1 below the fused
area, 1 seudoarthrosis and 1 incomplete paraplegia that resolved when
the implants were removed. We observed only one case of crankshaft
phenomenon.

The treatment of severe infantile scoliosis has several problems.
Early spine fusion promotes a short trunk and a poor correction.
Repetitive distractions with minimal fusion around the hooks has a
great morbidity, but we achieved a reasonable delay in the
progression of the curves. Most of the curves have improved
initially, afterwards maintained their angular values and the final
correction showed stiffness of the curves. This program is a
reasonable treatment for dealing with very severe infantile scoliosis




J Bone Joint Surg Am. 1996 Aug;78(8):1140-8. Related Articles, Links


Juvenile idiopathic scoliosis. Curve patterns and prognosis in one
hundred and nine patients.

Robinson CM, McMaster MJ.

Edinburgh Spine Deformity Unit, Princess Margaret Rose Orthopaedic
Hospital, Fairmilehead, Scotland.

We reviewed the medical records and radiographs of 109 consecutive
patients who had juvenile idiopathic scoliosis. The sixty-seven girls
and forty-two boys were a mean of six years and ten months old
(range, three years and four months to nine years and eleven months
old) when the curve was recognized. One hundred and four patients had
a progressive curve: twenty-eight had a single mid-thoracic curve
with the apex usually at the eighth thoracic vertebra (Group 1A),
twenty-nine had a major mid-thoracic curve with the apex usually at
the eighth thoracic vertebra and a secondary minor lumbar curve
(Group 1B), twenty-seven had a single thoracic curve with the apex
usually at the ninth or tenth thoracic level (Group 2), eight had a
single thoracolumbar curve with the apex at the twelfth thoracic
level (Group 3), and twelve had a major lumbar curve with the apex at
the second or third lumbar level and a secondary minor thoracic curve
(Group 4). Five patients (5 per cent) had a resolving curve. Eighty-
nine of the patients who had a progressive curve were followed to
skeletal maturity. Eighty-eight patients were managed with a brace.
The curve progressed at a rate of 1 to 3 degrees per year before the
age of ten years and 4.5 to 11 degrees per year after the age of ten
years. In sixty-seven of the eighty-four patients in Groups 1 and 2,
a spinal arthrodesis was performed before the age of fifteen years
(mean age, eleven years and ten months; range, nine years and three
months to fourteen years and eight months), at which time the mean
curve was 47 degrees (range, 24 to 90 degrees). Eight patients were
not seen by us until they were fifteen years old or more, at which
time the thoracic curve was 74 to 120 degrees; a spinal arthrodesis
was done in seven. The curves in Groups 3 and 4 had a more benign
prognosis, and only three patients in these two groups had an
arthrodesis. The pattern of the final curve was not always apparent
at an early stage, and there was extension of the primary curve or
development of secondary structural curves with progression. The
chief prognostic feature at an early stage was the level of the most
rotated vertebra at the apex of the primary curve, and the final
pattern of deformity was defined by the level of the caudad neutral
vertebra in the primary thoracic curve.

Sealy
13th March 2005, 05:07 PM
I have no idea how that happy face with the sunglasses got in there :-o You know what's really weird ??? I went to edit it out and I couldn't find it - yet it shows up on the post. :rofl: As you can see I'm having one of those days...




Sealy

andrea
13th March 2005, 05:45 PM
Hi Dave

My daughter was also diagnosed with infantile ideopathic scoliosis at about the same age as Emmeline (well, 20 months) and has been in serial plaster casts ever since (she is now 2 and a half). She was 62* at diagnosis and is currently around 34* in the cast. While we haven't had the hard decision that you are facing now, it's a big possibility that we will also face it at a later date. At the moment we are "happy" with casting and I want to keep her in a cast as long as her doctor is willing to put one on her.

As the others have said, your decision probably depends on whether a cast will stabilise her curve and prevent it from progressing or not. If there is a chance that it will hold the curve at 50*, then I personally would opt for this, given that it will delay surgery as long as possible. Where are you based? The kind of casting that you have had so far may depend on where you are. Serial casting is the normal treatment for infantile scoli in the UK, but not in America or Australia, for example. If you are in the US, you may want to take a look at www.infantilescoliosis.org for more information on casting techniques and treatments now more readily available than they were a few years ago.

If you decide to opt for surgery, from what I've seen of growth rods, they offer a good alternative to fusion and allow your child to continue to grow. The downside is the ongoing surgery every few months to extend the rods, which you know. I'm sure that you will continue to research your options so that you can make the best choice for your child, but please feel free to ask questions or vent your frustration and anger on the site. We all do it and it's much needed!

Andrea

newgirl
15th March 2005, 01:07 PM
Hi William,
I am afraid I am not familiar with the surgery options, my 18 month daughter has just being put in her first cast, however I know how stressful it is to make decisions for your children. As Andrea said feel free to ask questions here, here everyone is so helpful. The very best of luck with your decision
N

andrea
15th March 2005, 01:49 PM
Hey N, how did the flight go? Is Niamh adjusting to the cast ok?
Let us know how she's doing.
Take care
Andrea

sins
21st March 2005, 12:07 PM
Hi Dave and Bev,
Just copied this post from the common room about a TV programme which may be of some use to you.
http://www.scoliosis-support.org/modules/i...t=0&#entry31103 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=1312&st=0&#entry31103)
Sins