Scoliosis in 6 year old with CP

[Trishmomof4]

Shelby has scoliosis and at her last ortho visit they x-rayed her and found out that she has gone from a 30 degree curve to a 52 degree curve. Her ortho wants us to go see the top guy that deals woth scoliosis in the aera and we go on the 20th. Our ortho said he might want to either put her in a brace or do surgery. The reason for the brace would just be to maybe put the surgery off until she is older like 10 yo.

My question is has anyone ever used a brace with sucess because I've been told that bracing someone with CP and such low tone usually doesn't do any good.

If youve had experiance with the surgery did that help? How bad was recovery?

Really any info that anyone has is greatly appreciated. TIA

[WorkinMom]

No insight to offer here but know and understand your worry/fears. Just want to offer some {{cyber hugs}} Weekends are slow so hang in there. Someone will be along soon with some advise.

Best Wishes
Jennifer

[Trishmomof4]

Thank you Jennifer I need all the good thoughts and encouragement possible.

[mama z]

I don't have any info b/c we're not there yet, and hopefully won't be.

But one of the big questions I would ask is how will the surgery affect her growth? At age 6 she still has a lot of growing to do.

I believe that Tracey's Megan has had this surgery as well. Hopefully she will be along before too long.

Take care,
Laura

[Mangosmom]

We had it done in April of 05. Wore the TLSO for about 4 years before surgery. Now we dont have issues with low tone. Ours is right the opposite. Major spasticity. They usually wait to do the surgery until the child has reached puberty or finished with growth spurts. Amanda had hers done at 9 years 10 months of age due to the curve getting worse. Amandas curve was about 78 degrees by the time we had surgery. As for the TLSO, it wont stop the curve from getting worse, but it will slow it down. Surgery really doesn't become and issue until the child is having problems with breathing, or the organs are being compromised. The TLSO, in our opinion is a pain the butt. But you do what you gotta do. It fits like a big corset around the trunk of the body. From under the arms to the bend in the waist. I have posted pictures before of Amandas before and after pictures but it was before our crash here so I will put some more up.

http://im1.shutterfly.com/procserv/47b5da06b3127cce910dff11291000000016108AbtGjNy2bNJ
Amanda before surgery

http://im1.shutterfly.com/procserv/47b5da06b3127cce910df13a293c00000016108AbtGjNy2bNJ

Amanda after surgery.


I searched for a picture of Amanda in her TLSO but everything was before I got my digital camera. I will sit down and go through my regular photos and see if I have something I can scan in later.

I know Tracy will be helpful when she comes through. I just wanted to put our 2 cents in too. If you have any questions feel free to ask. I will do my best to help.

Carrie.

[Trishmomof4]

Thank you so much Carrie you have been helpful and thanks so much for the pics. I have her x-ray on my blog but I'll post it here too

http://i8.photobucket.com/albums/a11/Trishmomof4/x-ray.jpg
I think I am just really worried that if we put her in a brace her muscles will atrophy and then she will loose what little muscle control she has but by the same token I don't want to put her through surgery until it is completely necessary.

[Mangosmom]

Surgery recovery is a booger. And there have been new issues since we got the surgery done. Amanda was in the hospital for about 5 days total. But we recoved at home for 6 weeks post op and then back to visit doc. Takes another 6 months or so to get to the point of really feeling like surgery is healed. And Amanda still almost 2 years later has issues if I pick her up wrong, or if I move her hips the wrong way. She will cry. Like I have hurt her. Along with Amandas curve, she also had a major twist and since the surgery we have not been able to keep her leg straight. Its an issue with the way her twist was now being straightened out, the hip is tighter.

Also, Tracy and I were just talking this week about constipation issues since surgery. It may be a spastic trait, but we both have seen a decrease in poop. Its almost like the brain, or muscles or something, wont push. I dont know. But those are a couple of other down sides to the surgery we have seen here. Now the poop issue may just be something that got worse because our girls were having problems before surgery too. If you dont have that problem, I dont know how much of a problem it would be after.

On the upside...

Amandas head control is much better since surgery. She sits MUCH better in her chair. Even going to order her next chair without side lats. woohoo! The rods hold her nice and straight and she isn't falling over non stop. And we were able to throw those darn TLSOs away!!!!!

Good luck.

[Cricket_Lighter_2]

I had to chime in as Bekah has very low tone and wears a soft TLSO. She loves it as she is able to be upright with little effort and then can do more of what everyone else is doing. Bekah has an S cruve with a 28* upper and a 53* lower. We are on the line as far as surgery but as long as she holds stable then we get to put off the surgery.

The Dr. has noticed an increase of back muscle tone. Bekah didn't learn to sit with out support until she was 6yrs. Bekah loves movies and video games on the tv. We use this to keep her busy when trying to sit, and slowly lean her to left a little and back to straight. Then we would do the same thing with the right side. It took 2 years but she is now able get into a sit, dance to her fav. music, and lay back down when tired. This is all with out her tlso on but by allowing her to use her muscles with out it a little she was able to grow and develope them.

Cricket and Bekah

[Tracy Sheppard]

Hello Trish.....My Megs had her spinal fusion surgery in July 2005. Megan wore a TLSO brace from the age of 4 til her surgery at almost 11 yrs old. Our surgeon, who was just wonderful, said that he would do the brace to hopefully bide some time, to get her more to the age of 10 or 11 due to the growth. The brace is a pain, I'm not gonna lie to you. If it is the hard TLSO like we had. But.....It was a life saver for us, it allowed Megan to hold off on this surgery until we absolutely had to. Like Carrie said, it is a major surgery and Megan was in the hospital for 6 days and the recoop time was lenghty. Megan's curve at the time of surgery was 75 degrees, her curve was literally crushing her lung and had pushed her digestive system under her ribs. Megan has always been lower tone, and the brace did make her a little weaker during that time. But our doc said to make sure that we did excercises on the ball etc, without it on to help offset that. Megan had to wear her brace 23hrs a day. You have to wear a t-shirt under the brace all the time. In the summer that stinks! But the brace also allowed Megan to be able to sit better and do things that she couldn't do with the brace. As far as the surgery and all it entails i would be happy to talk in length about that also, . Just let me know I'd be happy to talk anytime and answer any questions you have. Just send me a PM. As you can see in the photos below the x-ray before surgery and after. You can see how her lung was being compromised. Like Carrie said with her daughter, I agree Megan can dooo SO much more now that her spine is straight. She can sit by herself, she is just so much stronger and able to do more things. I will try and find a picture of Megs brace also.
Hugs to you deary
Tracy

http://i68.photobucket.com/albums/i15/megansmom67/meganbeforesurgery.jpg

http://i68.photobucket.com/albums/i15/megansmom67/megantopafter.jpg

[Trishmomof4]

Thank you all so much for sharing your stories with me. As far as questions I'm still not quite sure what to ask yet. Like I've said before we go see the expert on the 20th and I am still not quite sure what all to ask him. I have been doing some reading about scoliosis since our visit to our regular Ortho and am finding myself a little overwhelmed so that is when I figured it might be better to ask some parents that have been there. I am touched that all of you have been so willing to share your story with me and I know I'll have plenty more for you. Thank you.