Re: New member with questions and now photos

[Guest guest]

Hi All,

It has taken me a bit to get my photos taken and organized, but I am sending them as an attachment to this e-mail. I hope there are not too many, but maybe the different positions will allow you to give me your thoughts.

Our visit with the doctor at Sac Shriners was not great. When the doctor was checking 's feet for contractures, something went wrong, causing to scream for >20 minutes. never cries like that. I think it was a soft tissue injury because with rest, and very mild gradual stretching he is getting better. We did not have the chance to discuss 's back much, but the idea of the titanium rib was mentioned. Any comments about this would be great. We may get a referral to a doctor within the group that does the surgery, and at that time would have radiographs taken.

is now sleeping on a 3" memory foam mattress on top of his crib mattress. Unfortunately for me, he still wakes up every hour, but the pressure should be less, so maybe he is more comfortable. has no strength, and little to no movement of his hands and arms, so he won't get himself in any trouble with the mattress.

Thanks again for being so welcoming. I will do anything I can to help my son.

Warm Regards,Meri

P.S. If we are ever allowed to post a link to a CaringBridge website, I can send 's so you can learn more about him and SMA, if anyone is interested.

To: infantile_scoliosis Sent: Thu, February 11, 2010 8:52:21 AMSubject: Re: New Member with Questions

I'm so sorry that you and your son have have to endure so much as well, Meri. I'm not very familiar with the Sacramento Shriners from this group- maybe another family can chime in, does anyone know if they do Mehta casting there? You would think you would get an X-ray from an orthopedic surgeon, to at least identify what is going on with your child's spine so they know how to best proceed on that level. Do any kids with this condition totally beat those odds? I pray so.I don't think there's anything wrong with memory foam...hmmm. ..unless they tear off a piece and try to eat it. I do know that for babies who don't roll over and lift their heads well, SIDS is reduced by placing them to sleep on their backs, using less fluffy bedding/pillows and a firmer mattress without a lot of padding and a well fitted sheet. The drop side type cribs are sometimes also recalled if

the pieces are faulty, one recall is in the Yahoo news today. I mention that in case it helps anyone else reading here...We put our son on his back, but he can roll to the side in his cast. In the beginning, that was a "no go" for a few weeks, maybe 2-3, he had to re-learn how to turn over in the first cast. Please do post pictures on the group and let us know when they are up.Best,

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, February 11, 2010 6:51:40 AMSubject: Re: [infantile_scoliosi s] New Member with Questions

Meri

I am sorry that your son has to endure so much. He sounds really strong, and I bet he surprises you everyday. As far as sleeping positions for Scoli kids....we asked our Ortho the same question and he said it really didn't matter their position, if scoli is progressive then nothing you can do (as far as sleeping positions) is going to make a difference. He just said let him sleep and lay where he is most comfortable. Since my son can turn himself I really can't answer your question about turning him in the night. Maybe someone else on here can chime in about that. Thank you for being so open about your son. Please absorb all the information from this group and go to your next appt armed with knowledge on Mehta casting. Good luck to you. Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

From: Meri Stratton Phelps <allcreaturesvncs@ sbcglobal. net>To: infantile_scoliosis @yahoogroups. comSent: Thu, February 11, 2010 12:11:00 AMSubject: Re: [infantile_scoliosi s] New Member with Questions

Thanks for the warm welcome, as well as the information.

has been seen at Shriners in Sacramento, by a Physical Med and Rehab doctor. We have a brace for him that does not cover his chest, but nobody has ever evaluated him specifically for scoliosis, nor have they taken any measurements of his spine. We have films from when he was evaluated for possible aspiration pneumonia (lateral and VD views). I can post a photo of 's chest and back if that would help (sorry - I don't even know if I can do this on this chat group). We have our next appointment at Shriners on Friday.

With type 1 SMA, 90% of children die before 2. Those that do live have such limited movement that scoliosis is usually not a problem, although thorax deformities (pigeon chest) is present. The type 2 kids who are stronger, and may have the ability to walk when they are very young typically have rod lengthening surgeries, sometimes starting as young as 4. has been in an assisted position enough that he has developed scoliosis, which I don't want to see worsen. I think the SMA world is behind in the best therapy for scoliosis. It could be though, that kids with SMA have such serious respiratory compromise that casting is not an option.

We have been out to SLC once to see an SMA specialist at Primary Children's. was very young at that time, and scoliosis was not a problem.

I wanted to go to our next Shriner's appointment with as much information as possible so I can intervene as early as possible.

On a side note, how do you position your children when they sleep? I turn every 1-2 hours from side to back to side again. I just don't know the best way to manage him when he is putting pressure on his deformed side.

What type of mattress do you all use? Pressure sores will likely be an issue for us in the future, and I was considering using a memory foam top on the crib mattress. Is this a no-no for managing scoliosis?

Thank you again! I am hopeful that I can identify something I can do to help .

Warm Regards,

Meri

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wed, February 10, 2010 7:04:17 PMSubject: Re: [infantile_scoliosi s] New Member with Questions

Hi, Meri, welcome! I also do not know about SMA, but have you consulted with a Shriners Hospital already? I ask because the one we go to in Salt Lake City, Utah, is wonderful, and we are getting this superior medical care that was not available in a major city, even with great health insurance. Where are you located? Another parent near you may have a good suggestion.

May I ask what your 's COBB angle or degree on the most current X-ray was?

Again, welcome, ask any and all questions of this great group!

Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

From: Meri Stratton Phelps <allcreaturesvncs@ sbcglobal. net>To: infantile_scoliosis @yahoogroups. comSent: Wed, February 10, 2010 2:56:25 PMSubject: [infantile_scoliosi s] New Member with Questions

Hi -

My name is Meri. I found the Infant Scoliosis website last night as I was searching for some help for my son. just celebrated his 2nd birthday. He has type 1 Spinal Muscular Atrophy. Over the past 9 months, he has developed scoliosis, as well as what I consider to be severe thoracic deformation on his right side. I don't know what to do for him, and whether or not casting will work for him. has almost no movement, spends most of his time lying down, or some sort of supported sitting (which is not helping his spine), and breathes with his abdomen, so anything constrictive may not be an option.

I have yet to read about all of the great references on the Infantile Scoliosis website, but wanted to see if anyone here has a child with SMA that has been helped. I have NO feedback from his doctors, except for them to say it is expected. has already outlived the predictions of his doctors, and I don't think they expect him to get old enough to have problems with scoliosis.

Many thanks for your comments, and for providing such a great resource!

Meri

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