Page 1 of 2 12 LastLast
Results 1 to 15 of 16

Thread: Recently discovered Scoliosis in 5 year old Daughter (6 years in March)

  1. #1
    Join Date
    Dec 2009
    Posts
    3

    Recently discovered Scoliosis in 5 year old Daughter (6 years in March)

    Nine months ago, we discovered our daughter Brianna had scoliosis with a 21 degree curve. An xray 3 months later showed the curve was essentially unchanged, so our Orthopedic Surgeon recommended the wait and see approach. However, 6 months later, the curve has now progressed to 30 degrees.

    Our situation is a little unique in that Brianna has Spina Bifida at L4, and had a pre-natal closure of the opening (this was done under an NIH study at UCSF). Our daughter's development has been tremendous, and we are truly thankful for this... she has not required a shunt, has excellent if not perfect bowel and bladder control and has full use of her legs, feet and toes, so we were not quite prepared for scoliosis. Of all of the things we worried about, this did not even make the list. However, it looks like it may be the major issue we have to deal with.

    Our neurosurgeon says that the MRI's show that she has only a mild Chiari II, no syringomylia or syrinx, however, like all children with Spina Bifida, she does have tethered cord, which could be a factor. However, both our neurosurgeons (one from Kaiser one from UCSF study) are unsure that the tethered cord is the culprit of the scoliosis, and they are reluctant to separate the tethered cord because of the small risk that she may lose sensitivity in some lower body functions. They recommend trying bracing first and seeing if the curve advances in 6 months while braced.

    The orthopedist is more inclined to believe the surgery will help, and was surprised that we were referred back to him for bracing before surgery. At any rate, Brianna will soon be scheduled for a brace fitting... I know little of the types of scoliosis yet, but this brace looks as if it would only go up to her armpit and down to her waist.

    Of course, we are discouraged and uncertain how these events will affect our daughter's future. We also want to do everything to make sure that our daughter is getting the best treatment, by pursuing every possible avenue. We are with Kaiser in Southern California, and we do not always feel that they put our daughter's interest first. For instance, when I mentioned the Spinecor straps to our Orthopedic Surgeon, he quickly dismissed them as expensive and ineffective. Argue "ineffective" but don't give me "expensive." When my wife mentioned some sort of therapy in coordination with the traditional bracing, he quickly dismissed her idea by saying, "It won't do any good. There is nothing else you can do." When I asked if the curve could ever improve, he said, "Permanently? I've never seen it." Maybe he is right... but my research and my gut tells me that he is just being hard-headed, and I don't know if I want my daughter being treated by someone with this outlook.

    At any rate, we will soon be seeking 2nd opinions from at least one other orthopedic surgeon, and possibly 1 more neurosurgeon (all non-Kaiser). We are in Santa Clarita, but would travel just about anywhere in Southern California, and we would appreciate any advice on finding the best Orthopedic Surgeon to discuss our daughter's situation. This is all new to us, so any advice in general would really, really, really be appreciated. Thank you!

  2. #2
    Join Date
    Aug 2009
    Posts
    1,164
    I'm hoping people are furiously PM'ing you, because I know next to nothing about this area (I have a 21 year old son with a 50 something thoracic curve which we noticed when he was 17.) First, sorry that you have to go through this.

    The little I *think* I know is:

    * The best place to find an experienced scoliosis dr. is at the scoliosis research society site. You don't want just an orthopedic surgeon - you need someone who really knows scoliosis in detail.

    * I believe we've seen some members on this site who've had success with the spinecore brace in juvenile scoliosis. I'm hoping one of them will pipe up.

    * If you're in watch and wait mode, you might look at some of the "glimmers" down in the research and non-surgical areas. In addition to spinecore, there is some thought that exercise might help, and there's some thought about biological models which I really don't know enough about to summarize.

    * You might also look at the scoliosis support forum - http://www.scoliosis-support.org/index.php - which has several adult participants with spind bifida and scoliosis.

  3. #3
    Join Date
    Oct 2008
    Posts
    299
    Hi,

    I sent you a PM (actually 2--they are the same; I goofed)
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    I'm sending you a PM as well.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  5. #5
    Join Date
    Dec 2009
    Posts
    3
    Thank you for the notes of encouragement and most of all for the information about Shriners and the doctors there. For the past few days, I have felt really helpless, not knowing exactly what to do or where to get advice from. This was exactly what we were looking for.... a direction, I guess.

    For the person that PM'd that we sounded like people that would travel anywhere... you hit it on the head. For Brianna's in utero Spina Bifida surgery, my wife and I moved to San Francisco for 3 1/2 month to be under the care of the doctors there. It wasn't easy, but we would do it again in a heartbeat.

  6. #6
    Join Date
    Dec 2009
    Posts
    3
    At the suggestion of members of this forum, in mid-January we traveled from LA to Philadelphia to see Dr. Betz (and Dr. Samdani the neurosurgeon). This was a good experience, and we learned a lot from the visit. He studied her xrays in great detail. He believes she has exellent flexibility and should respond well to bracing and suggested a Boston when we return home. Dr. Betz believes the best strategy is to aggresively brace Brianna until she is a little older, and then possibly have us return to perform the stapling in coordination with the hybrid rods when she is a little older.

    On our return, we already had a Cheneau brace prescription for Brianna through Kaiser Permananente, so we thought we would give that a shot. She started wearing that exactly 4 weeks ago. We had a few tightening and adjustment appointment 2 weeks ago and yesterday, we had our first in-brace xray. The results were not impressive. The top curve went from 28 to 24.... the bottom stayed the same at 24. Dr. Betz's office said they would expect her to be 10 degrees in a properly fitted brace.

    The orthotist seems convinced that Brianna's curves are so close together and that her body frame is so small, that she cannot get a good correction from a single brace and that she needs 2 braces, worn half and half through the day... one for the lumbar, and one for the thoracic. He will take this brace and pad it up for her thoracic, and create a new lower brace for the lumbar. He said that he's had good initial results with this new approach. He placed a small pad in this brace yeasterday, but I don't have a lot of confidence it is correcting the top curve to 10 degrees. I just don't see it, but I am not an expert.

    These results have left us a little discouraged.. so we are definitely taking another look at the Boston. I've seen such great results for some with the Cheneau, but in Brianna's case so far, it does not appear to be effective.

    Has anyone ever heard of using 2 braces to treat a double curve? Also, has anyone found that it takes longer than 4 weeks to get a good result from in-brace xrays?

  7. #7
    Join Date
    Oct 2008
    Posts
    299

    Hi Brian

    I sent you a PM
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi there,

    I have personally never heard of a recommendation for a child to need two separate braces for two different curves. The problem I wonder about is that it cuts the in-brace time in half for each brace, so even if she is braced 22-23 hours per day, she's only getting 11 hours for each curve. I really can't believe they can't make one effective brace for a small child with a double curve. Many kids with infantile scoliosis are braced as young as 18 months old, they must be smaller than your daughter. If this was my daughter, I would not be happy with having her wear a brace that gives such poor in-brace correction. I would be very inclined to pursue getting a Boston. And Kaiser should give it to you since the Cheneau they made you is ineffective.

    You are in wonderful hands with Dr Betz and Shriners Philadelphia. They have followed my young daughter for the last two years. I would be very inclined to call or e-mail Janet Cerrone and ask her opinion about what the orthotist is telling you. It just does not sound right to me.

    Good luck,
    Last edited by leahdragonfly; 02-27-2010 at 03:52 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Brian,

    I agree 100% with Gayle. My son wore a brace before he was 2 years old and there is no reason, no matter how young the child is, that they can't properly fit a brace (one brace) to address the child's curves.

    It makes absolutely no sense to me to wear two different braces - in fact, it goes against everything I understand about bracing. As Gayle pointed out, with two different braces, each brace would then be "working" 11 hours per day and that's not going to be effective. I would even be concerned that it might do more harm than good.

    Something definitely does not sound right here.

    My son has been under the care of Dr. Betz and his team at Shriners Philadelphia since 2003 and they are head and shoulders above any other doctors we saw in NY. Definitely call Janet. There is also a great orthotist at Shriners (Harry Z.) who can hopefully make ONE brace that will be effective.

    And yes, a brace should bring at least a 50% correction of the curve or it's really not going to do anything.

    Best of luck to you and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •