Re: Re: Cast will include one leg casted?

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Kim,

WOW! You and have been thru so much! My son also has a chiari malformation and had decompression surgery 5 mos ago and they removed scull and C1 so i totally understand the fear of screws in the scull. I am always fearful of the traction they use to cast him with since most of C1 was removed and the best answer i got about the risks involved were that "there was nothing in the literature about that." Not very reassuring but what choice do we really have?

We are all here for you. Please keep us updated on her MRI results and how the casting goes. We get our follow up post op MRI in March to see how successful our surgery was so i understand that part of your nervousness.

Subject: Re: Cast will include one leg casted?To: infantile_scoliosis Date: Wednesday, January 13, 2010, 11:17 PM

Thanks for the replies.The care coordinator called it a Risser cast which was why I was questioning him so specifically. The doc assured me that he was trained at Shriner's Salt Lake with the Mehta EDF system and now they have the same pediatric table in Portland as they do in Salt Lake etc, there is now someone in Portland that has come from Salt Lake as well and they cast kids together often. He isn't totally sure yet whether he'll have to include a leg or not in her cast. She is at 90 degrees with severe rotation & rib hump - I'll post pics...when we met him in September he originally wanted to do a halo traction first but has now had 2 neurosurgeries, got her head re-shaped, skull removed etc, so may not be a good idea for her to get 8 screws in her head....that surgery was only 1 year ago, and the Chiari Decompression was 2 months ago. gets a follow up MRI in February at BC Children's to ensure her Chiari

decompression was successful, so I asked for a casting date at beginning of March. Although the Shriners doc said she could have her MRI done while casted, she had a lot of difficulty coming out of sedation after her last surgery, was on breathing machine for 5 days in ICU etc so for her next sedation I need to make sure doc's can have all monitors on her and be able to do chest physio etc to help clear her lungs if needed. So I figure once we get through that we'll try casting in early March. The Shriners doc says without doing the halo first, we may only get some correction depending on the flexibility of her curve. Her scolio is congenital/neuromus cular and syndromatic not idiopathic so this will just be putting her off for awhile before getting the growth rods & fusion most likely...but you never know, he just doesn't want unrealistic expectations of course. doesn't walk or crawl yet, but stands holding on. She is 26 months, and I

worry about how I would carry her around if the cast went down her leg, couldn't bend or sit in stroller / carseat etc. But growth rods or VEPTR for a 2 year old isn't ideal either. Sometime this year she will likely have to have surgery re-done on her eye lid that didn't lift well the first time (to improve vision), ear tubes, as well as possibly a Cochlear Implant due to severe hearing loss. Not sure if it is ideal to be casted through these surgeries, and Portland is a 5-6 hour drive. So much to think about.Kim>> Proper EDF/Mehta casting does not entail casting limbs. I have seen> children casted with arms/legs who went from being ambulatory

to non> ambulatory (for months) and also ended up with serious skin> issues/breakdown, which prevented further casting... The cases that came> through this group eventually ended up travelling elsewhere for proper> casting. Unfortunately, these children missed their opportunity to grow> straight because precious time was wasted with ineffective/ maintenance> casts....Please enquire/confirm when/where the surgeon acquired hands on> training and confirm the docs reasoning in including a leg.He may have a> very valid reason(?). This post is NOT to alarm you. I just want to be> sure that gets to the right place.> > Call me if you want.> > > > Sincerely,> > HRH> > ()> > > > From: infantile_scoliosis @yahoogroups. com> [mailto:infantile_scoliosis @yahoogroups. com] On Behalf Of Kim> Sent: Wednesday, January 13, 2010 2:18 PM> To: infantile_scoliosis @yahoogroups. com> Subject: [infantile_scoliosi s] Cast will include one leg casted?> > > > > > I had a good conversation with a doctor at Shriner's Portland who answered> all my questions and agreed to treat , complications & all. By the way> Portland does

use EDF pediatric casting table and my doc who I listed in the> database is Mehta trained.> > Anyway, he said he may need to cast one of her legs with the cast as well,> down to the knee. Her curve is lower (around stomach area) as opposed to> near lungs/heart. I imagine there is a special way of diapering for this> etc., but has anyone else had a leg casted with the torso cast?> > Kim> Mom to (27 months) curve around 90 degrees>