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Thread: New to NSF . . . why hasn't anything new been posted to Juvenile in months?

  1. #1
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    New to NSF . . . why hasn't anything new been posted to Juvenile in months?

    My daughter was born with a cleft palette, a recessed lower jaw, and a minor hearing loss. Then at her 9 month check up with her pediatrician she bent over and I asked if her back should be hunched like that, of course it ended up being scoliosis. That was 8 years ago, since then we've been taking her to Intermountain Shriner's in Salt Lake City UT. Dr. D'Astous and Dr. Pond have been amazing. She has had 3 riscor casts, but has mostly been braced in a Boston brace. I am extatic to have now just found this site and am wondering why I didn't look before. I started reading and realised just how little I know about my daughters condition and what can be done for her. To get to the point before I ramble on for too long, I'm wondering if someone can give me a few quick answers. I'm wondering what vertabral stapling is, and what sort of conditions it's done under. I'd also like to know if there are restrictions on the degress a Spincor brace will help. Thanks to anyone, who can help!

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Esa,

    You will see from my signature that my son had vertebral body stapling AND that he is also a Shriners Kid. I am equally thrilled with the treatment he has received in Philly and have heard great things about the hospital you go to as well.

    There is a support group for parents interested in VBS (and soon may be a website dedicated to informing folks about the procedure - we are working on it). Here's the link:

    http://health.groups.yahoo.com/group/staplingsupport/

    There are a bunch of parents whose kids have had the surgery who will share their experiences with you. The procedure has been a Godsend for many and very successful so far.

    Also, feel free to e-mail me and I will gladly answer any specific questions.

    In the meantime, and for anyone else who reads this, the two GENERAL criteria to be a candidate for VBS are:

    1) A moderate curve (upper limit it about 45 degrees); and
    2) The child must have significant growth left to do (Risser 0 or 1 for girls)

    Of course, there are many variables that come into play, and the only way to find out for sure if one is a candidate is to be evaluated. This can sometimes be done long-distance by sending films, medical history, etc. to the attention of Janet Cerrone (she's Dr. Betz's PA and she wonderful - she's been involved closely with VBS since inception). Her contact info is:

    jcerrone@shrinenet.org or call 1-800-281-4050.

    Best of luck to you!!
    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/

  3. #3
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Esa,

    My name is Amanda and my daughter Lorena has also undergone Vertebral Stapling and is also a Shriners Patient. We see Dr. Betz in Philly and could not be happier with our results so far.

    I see Maria has already given you some of the general info regarding VBS as well as Janet's contact info.

    Since your daughter is already a Shriners patient it may be as easy has having films sent to Philly for review. Have you discussed VBS with Dr. D'Astous? Most of the Shriners docs are more than willing share treatment responsibilities with other docs.

    Sorry but I don't know much about spinecore but I'm sure other parents will chime in with info for you.

    Please take a look at our VBS support group website ~ you will find a wealth of VBS information there with plenty of first hand real experiences.

    Also feel free to email me domingo_amandapompa@msn.com, I would be more than happy to share our experience in more detail.

    Good Luck and hope to talk to you soon.

    Hugs ~ Amanda
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  4. #4
    Join Date
    Oct 2007
    Posts
    99
    Hi Esa,

    sounds like you and your daughter have been through a lot already!! This website does contain a lot of information you will find helpful. You also get many responses from moms and dads who have tried different treatments. The best place to get information about the spinecor brace is in the bracing section, there is a spinecor thread. Go through that, or just post your questions. (going through that thread may take days!) I strongly considered spinecor for my daughter, and I think it is a solid option for treatment. We ended up having the VBS surgery. In fact, my daughter just got back to school today. I am happy about my decision and Michela's back looks fantastic.

    The best thing to do is contact Janet Cerrone at Shriners in Philadelphia. I see Maria has already given you the contact info in the post above. Janet can give you the info you are seeking. She is the physician assistant who works very closely with the surgeons who perform the surgery. It may take a day or two to hear back from her but she will contact you. It is best to get your questions answered from the experts!! However, you will be able to get many questions answered here too. Moms have great insight and a lot of truly valuable info.

    What degree curve does your daughter have now??

    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  5. #5
    Join Date
    Oct 2007
    Posts
    99
    Esa,

    to answer your question, vertebral stapling is the placement of titanium staples into the convex side of the affected spinal region. The staples go from one vertebra to the next. After surgery, you generally do see immediate results(which for my daughter was amazing.) But the theory is that as the child grows, the growth plates on the convex side are slightly inhibited. This allows the spine to grow straighter. The great thing about stapling is the child maintains complete flexibility of the spine. After the recovery time, about 6 weeks, the child has no activity restrictions and does not have to wear a brace. My daughter had VBS on 12/19/07. She is back to school as of today. Michela looks and feels great. If I let her, she would go back to her karate class today.

    VBS is major surgery and requires much consideration. But it is a wonderful option. If you hunt around this site you will find some other threads that have discussions on vbs.(I think they have a VBS title) They provide good information and many opinions.

    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  6. #6
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    Wink This site is amazing!

    Thank you all who have given me so much more information then I had ever hoped for. We have an appointment with Dr. D'Astous on 1-30-08, and I will be asking him many questions regarding all of this. I really hope to help my little munchkin (she's in 3rd grade and about the size of a 1st grader) more then I have been able to in the past. Last appointment Jasmine's curve was at a 38 upper and 26 lower in brace. After her last casting Dr. D'Astous had said an off hand comment about considering surgery after her next cast (possibly going to be scheduled for at her next appointment) and I know having all of you to talk to is going to help us in so many different ways.

    My next question is kind of a unique situation. Jasmine's biological father and I are no longer together, we are both remarried and have other children. Jasmine's step mom seems to be very against casting her again, and although I have full legal custody and the right to make the final decision, I believe they will voice their opinions to Jasmine against the casting and make it much harder for Jasmine to deal with. Anyone have a suggestion as how to handle this? Her dad, step-mom and I do not get along very well unfortunately, so it's kind of rough in the first place, but adding in all of the medical decisions, and their ability to influence Jasmine makes it even more difficult. Luckily in the past it hasn't come to too much of a head since they only got married a few years ago, but I'm afraid as we get closer to more surgeries it's only going to get worse. I know legally I can just make the decision and not have to worry about what they say, my concern is how it will affect Jasmine. If we're all on the same page and support her it would be so much easier for her. Anyone had to deal with this sort of thing before?

    Thank you all!
    Melisa

  7. #7
    Join Date
    Sep 2005
    Posts
    877
    Hi Melisa,

    Your name is similar to mine. I have no experience with divorce whatsoever, but just a suggestion. Would it be possible for all of the grownups to be present at an important meeting with the surgeon so that they can see that what you are doing is important. If they don't come, you can tell your daughter that they don't know all the facts and don't really understand. If they do come, then they will know that this is necessary.

    Melissa
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  8. #8
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    wish it was that simple . . .

    Melissa,

    Is your name pronounced like the normal mahlissa? My parents decided to make life a little difficult and pronounce it mahleesa, but I love it since it's just a little different!

    Her dad attends almost every doctors appointment, which is good that he's there to support and hear what the doctor's have to say, unfortunately he doesn't always see just how important it is, and comes to different conclusions of what is going to be the best course of action. His wife is a CNA in a different hospial in a different department, and so thinks she knows what's best (sorry to be synical) just because she works in a hospital.

    I appreciate the suggestion though! I wish it was as simple as that . . .

    Melisa

  9. #9
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Melisa,

    My Braydon is now 12yrs old and has congenital scoliosis. His orthopedic surgeon is Dr. John Smith at PCMC. I know of Dr. D - he does amazing work for infantile scoliosis! Since Jasmine is "older" I would be asking Dr. D about VEPTR in addition to VBS. There are several new options available and you want to make sure you find the RIGHT solution for her. I'm not sure Shriners in SLC is doing new VEPTR implants (they did a few, but are now just doing expansions on existing patients) so hopefully Dr. D will be honest and helpful in finding the right recommendation for her. If not, consider getting an opinion from Dr. Smith at PCMC. With any opinion you get for her, the docs will need to know her medical background so they can help find the right plan. Good luck and let me know if I can help.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  10. #10
    Join Date
    Nov 2007
    Posts
    28

    Melisa

    Melisa,
    I'm fairly new to this forum as well, but wanted to share our experience with you. I found out my daughter had scoliosis when she was 9, she is 13 now. She is premenarchal and has a Riser sign of 0, so she still has alot of growing to do. She has gradually progressed every year so her doctor predicts surgery in the near future, but until then I'm doing everything I can to hopefully prevent that. Right now she is 42 thoracic and 28 lumbar...at 9yrs old she was 18T and 16L. Throughout the years we have been through 3 braces and the CLEAR Institute program with no success. From this site I found the Scoliosis Rehab in Stevens Point, Wisconsin that we will go to this summer. If you like to look into it, it is scoliosisrehab.com. Also we are going to Fairfax, VA to get a brace that she's never worn before called the Cheneau brace by Luke Stikleather. His site is orthoticsolutions.com. I've contacted people from a reference listed provided by Scoliosis Rehab and have heard nothing but positive about the rehab and brace. I don't know much about VS, but I wanted to let you know what I have found in case your interested in it. I feel like its been a huge blessing to have come across this site and found Dr. Luke and the Rehab! You hate for your kids to have surgery unless they absolutely have to. Best wishes to you and your daughter. I hope that the ex will be more open minded about your decisions, I know that it doesn't make it any easier on you.
    Blessings,
    Tina

  11. #11
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    Carmell,

    Jasmine goes to PCMC for her cleft palette and hearing issues, which will make it so much easier if there is a need to go there since Jasmine is so familiar with the hospital. I wasn't aware that PCMC did much with scoliosis, we've always just gone to Shriners and been so grateful to have a great team there that I haven't looked into other options. It's such a relief to find out just how many other options there are and that we do have other choices!

    Tina,

    I will definately be visiting the sites you've suggested. Jasmine has already had 6 surgeries (all related to her cleft palette and hearing loss) in her short life and I would hate to subject her to more. It's such a balancing act of trying to keep your child from having more surgeries, but at the same time always doing whats going to be in their best interest. I sometimes have wondered if I need to go to medical school just so I feel like I have all the information I need to make the right decisions for her.

    To all,

    I have to say it again, this site is such a blessing. In the 9 years since I had Jas, I've never had other moms that are going through similar situations to discuss this with. It's such a relief to know we're not alone, even though I know realistically we're not, but to have someone to talk to makes such a huge difference for me. Thank you to everyone who gives advice, makes suggestions, or just shares their story. It all means so much to me.

    Melisa

  12. #12
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Melisa,

    Each scoliosis patient is different. Many factors need to be taken into consideration - age, other medical conditions, type of scoliosis, etc. Shriners in SLC is one of only a handful of hospitals successfully treating infants/toddlers/young children with idiopathic scoliosis. PCMC is one of only a handful of hospitals treating young children with congenital scoliosis and kids with multiple medical issues, including chest wall deformities. They treat complicated kids from out of state frequently. Dr. Smith had one patient who came from back east (a patient of Drs. Betz and Flynn in Philly) who they wanted him to see so they could all be on the same page about her treatments. You will be in great hands there if Dr. D doesn't have any further recommendations for her besides fusion (please don't fuse yet).

    I've only found one department at PCMC that is on the weak side... the rest have been fabulous in Braydon's care (ortho, urology, cardiology, ped. surgery, plastic surgery, neurosurgery, neurology, etc.). 24 of Braydon's 26 surgeries have been at PCMC so its his home away from home
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  13. #13
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Esa,

    I'm so sorry to hear of the your "added stress".

    It's difficult and very sad that their opinions do ultimately influence Jasmine's attitude toward future treatments.

    I too have had the pleasure of dealing with bio-mom/step-dad. My step son lives with dad and I and I've known him since he was 3 yrs old and we have not always agreed 100% on everything. We do try our best and keep a very open relationship. (with Erik being 18 now it's not as neccessary as when he was younger) but we've always asked 1 important question ~ what is in Erik's best interests? Sometimes if there's ill will with bio-mom/bio-dad it's best to let the step-mom/step-dad step in because they may have a clearer view of what really is best and not using the situation just to push each other. My hubby and ex used to do that every chance they got.

    I would suggest that you take the time to sit down and since your ex-hubby already attends the doctors visits he knows what it is being said. If they are so against casting maybe you should allow them the opportunity to find an alternative treatment that would render similar results. I realize I may be playing devil's advocate here but it never hurts to have multiple sets of eyes looking and searching for the best where your daughter is concerned. What they may find is that there are no other alternatives and they would have to conceded that casting is your best option. I would also explain to them that even though they may not agree with your treatment of choice you must all present a united front for Jasmine's sake ~ If mom/dad/step-mom/step-dad are all telling her it's for the best and all will be okay she'll be much more willing to accept whatever it is she has to do. I realize it's hard especially when relationships are strained but it's important to try to mend that relationship, move forward and concentrate on what is really important ~ Jasmine's well being and quality of life.

    I know as a mom we all want what is best for our children ~ good luck @ your next appt and keep us posted.

    You've got my email ~ feel free to use it.

    Hugs to you ~ A
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  14. #14
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    Carmell,

    Hello to you again! Wow, it sounds like you've had quite the adventures at PCMC. I have to agree with you as far as PCMC goes. We've only had to deal with ENT, Craniofacial, urology, dental surgeons and ped surgery, but every experience we've had there has been positive. Jasmine's ENT Dr. Muntz, is excellent. She absolutely loves him, he puts her at ease just by coming into the room.

    Amanda,

    I love your idea about asking them to find an alternative if they don't want to go with casting. Please play devils advocate, it gives me a different point of view. I hope I don't sound too spiteful when it comes to dealing with step-mom & bio-dad (I like that phrase) It's been a rough 6 years since I left her dad, and although on this site I might voice my scorn for certain things they've done, Jasmine hears none of it. So please continue to tell me your opinions, stories, and in general how your family has handled and delt with these difficult situations. Having a different point of view from the other side of our situation is exactly what I need.

  15. #15
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    One more thing . . .

    I'm realising more and more as I move around on this site and do more reading how common it is for siblings to have scoliosis. We have a 3 year old daughter too, anyone know how at risk she is? She was born perfectly healthy (as far as we can see) how soon and how often should we have her looked at?

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