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L's Mother
01-19-2007, 01:14 PM
Hello everyone! My name is Laimi. My son is 22 months old and we are considering growth rods. We saw a doctor already who advised us the child does not qualify for VEPTR. The two choices my son has right now are:
1) the fusion of 8 vertebrae in his torso which will make his torso remarkably shorter or 2) growth rods in order to gain time for growing.
The problem with growth rods is that two vertebrae at the top and boton of the rods will need to be fused in order to attach the rods. In addition, rods brake, screws come out, the rubbing of the metal against the vertebrae can cause undesirable fusion, etc. If things go wrong with the rods, the child would then need to have the eight vertebrae fused anyway plus the 4 that were already fused to attach the rods. (12 vertebrae total). I need to know about your experiences with rods, especially in young kids. I will greatly appreciate your opinions. Thanks.
Laimi

Celia
01-19-2007, 04:32 PM
Hi Laimi,

So sorry to hear about your little boy's situation! What degree curvature does he have ? Is your doctor planning dual growth rods or single ? If you don't mind my asking, who is your doctor?



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L's Mother
01-23-2007, 02:14 AM
Hi Celia,
The last meassure was 78 degrees for the kyphosis. They did not pay attention to the scoliosis because it is not as bad.
We do not have one doctor. Instead we have seen 1000! Well, not so many, but we saw six here in South Florida. Four think we should wait, two think he needs surgery now. These two only want to fuse. We also went to Cincinnati and Boston. The doctors we saw there talked about dual growth rods and agreed that waiting would be worse. Cincinnati is using titanium growth rods, (NO VEPTR). We don't know if Boston is already using titanium too or steel rods. I guess we will ask soon.
Anyway, at this point we are waiting for an evaluation from San Antonio to see if the child could benefit from the VEPTR. If they say no, then we will have to go with the rods. This is why I want to know about others' experiences with growth rods. We were told in Boston that growth rods will sooner or later cause problems (????) and it would only give us some extra time before fusing. I know the rods can get loose, brake, etc. but I wonder is there is really no solution when this happens.
Laimi

Celia
01-23-2007, 02:39 PM
Poor you! It sounds like you've heard everything already! Don't they normally use Milwaukee braces for kyphosis ? Have you tried the Milwaukee brace and if so what kind of correction were you getting with it?

I can only give you a parent's perspective. You are aware given your son's age that whatever surgical treatment you decide to go with will be a long term commitment and most likely will be accompanied with complications - however I'm sure these complications can surgically managed by an experienced doctor - however it will take an enormous emotional toll on you and your family. I don't know if kyphosis is a contraindication for dual growth rods? The surgeon's experience dealing with such cases would be key... I've heard Dr. Skagg's name mentioned a few times regarding growth rods and kyphosis and he would be the one to contact but he's out in the west coast. I also remember reading about children with kyphosis who underwent halo gravity traction for a period of time and it corrected their kyphosis to a certain degree followed by surgery. The Veptr is mainly used for thoracic insufficiency syndrome however some doctors are using it for idiopathic early onset scoliosis and the advantage to it is it doesn't involve the spine at all and it seems like an attractive alternative to growth rods which have screws that attach directly to the spine... rod breakage, auto fusion and infections are some of the complications associated with growth rods. If you decide on growth rods, I would choose dual growth rods because the doctors using it are getting better curve correction versus single growth rods. Fusion of 8 vertebrae should be *definitely* out of the question! Not only will you have a shortened torso but diminished pulmonary function which will lead to serious repercussions later in life. Look at

www.srs.org under webcasts - there are some excellent presentations on growth rod surgeries.

Here's doctor Skaggs contact info:

David L. Skaggs, MD
Children's Hospital Los Angeles
(323) 669-4658
4650 W Sunset Boulevard
Orthopaedics #69
Los Angeles CA 90027
http://www.chla.usc.edu
Adolescent, Juvenile/Infantile





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L's Mother
01-23-2007, 05:42 PM
Celia,
they would definitely use two rods. I kept the info about this doctor in LA. I guess we will contact him soon. Thank you for everything .
P.S. We thought about halo traction, but unfortunately, we found out in Boston that the second cervical vertebra has missing pedicles too. If they pull up, the child can be paralyzed. Imagine how we felt when we found out that we had one less choice.
Laimi

Celia
01-25-2007, 07:40 AM
Hi Laimi,

I read somewhere that Dr. Skaggs is using growth rods which are similar to the veptr. If you go the www.vetpr.com and post some questions, I'm sure the parents who are being treated by Dr. Skaggs will respond soon enough.



Good Luck!

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mariaf
01-25-2007, 08:31 AM
Celia,

A growth rod that is similar to the VEPTR sounds very promising! Let's hope Dr. Skaggs is on to something :)

Thank God that doctors seem to be trying every day to come up with new techniques to offer these kids (particularly the ones diagnosed at an early age) better alternatives.

mom2cole
01-25-2007, 10:54 PM
Hi
My son goes to Dr Skaggs and has the rods that are similar to Veptr. He has had them for almost 6 yrs now. I highly recommend Dr Skaggs and CHLA. Let me know if you have any specific questions regarding the rods, Skaggs or Hospital.
Stacey
Mom to Cole
12 yrs old

L's Mother
02-26-2007, 06:55 PM
Stacey, Celia, and everyone else,
thank you so much!
Stacy,
please, send me all the information you can (pictures, x-rays, etc.) I will greatly appreciate it.

mom2cole
02-27-2007, 09:12 PM
I just sent you a PM to answer your questions on the PM you sent me.
Stacey