8 year old son

[wendy]

We were told today that our son (who turned 8 in June) has scoliosis...15 degree curve and a Risser score of 0. 15 degrees does not sound horrible to me but the doctor expressed serious concern and said that he will definately be braced at some point and will quite possibly need surgery. He is in the process of referring us...he has recommended Dupont Children's Hospital over Hershey Medical Center. Any thoughts? Does anyone have specific experience with doctors in this area - Central PA, DE, MD, NJ?

Is it ever possible that a young child is diagnosed and the curve does not progress?

Thanks.

[Mary Lou]

Hi Wendy,

I live about 20 minutes away from Hershey and my 14 y.o. daughter had surgery there almost 8 months ago. Her doctor is Dr. Lee Segal and he is AWESOME!!!! When Jamie was originally diagnosed, our family doctor sent us to Hershey first since it was so close, but he strongly recommended DuPont Clinic in DE if we weren't happy with Hershey. He personally took his son to DuPont some 25 years ago and was very happy there.

I'm curious as to where you live. The reason I ask is that we have a Scoliosis support group right at the hospital in Hershey. Feel free to e-mail me at Spinesupport05@aol.com for more information on the support group, or Dr. Segal.

Mary Lou

[Kim T]

Hi Wendy! First of all--welcome. This is a wonderful support network for us moms of scoliosis children. As you may know form my thread, my son Alex who is 5 (almost 6) was just diagnosed with a 30 degree S curve (thoracic & lumbar spine) in July and I was very shocked as well at first. We found it during his pre-Kindergarten physical and a follow-up x-ray. Previously I never even knew much about scoliosis and I was overwhelmed at first too.

As you research further (as I did and still am!) you will notice that scoliosis in young children, especially boys, is more rare than in teenagers. Dr. Albanese in Syracuse, NY explained it this way: With young boys there is a negative aspect in that boys grow more rapidly and usually for a longer period of time than girls. Therefore, since a young boy has so much longer to grow the curve has a very high chance of progressing. But younger children usually respond to bracing, if that's an option for your son, more readily than a teenager would as their bodies are more flexible since they are still growing at a rapid rate.

You are not alone--I have been in your shoes and still am waiting for an MRI in about 3 weeks to view Alex's spinal chord before deciding if bracing is the right option. Just take it one step at a time. The first step is to get your son evaluated by a reputable Pediatric Orthopedist/Orthopedic Surgeon. If you reference my thread, Linda posted a link there that is helpful in finding a doctor in your area. Best wishes!

I'm sure Carmell will be posting some very informative information soon as well. She is a wellspring of knowledge about scoliosis, as everyone here has been.

[wendy]

Kim - Thanks for the info. I printed out the list of specialists from your link. I am also waiting to hear who my local orthopedist recommends and have a call in to my pediatrician...probably looking at Hershey, Dupont or maybe someone in Philly. I feel lucky to be in a part of the country where I have options. I was interested in your thread because you have a son with scoliosis. The thought of 10-12 years left of growth leaves me in a panic. And we have TALL men in my family...

Good luck to you! Sounds like you have really educated yourself in such a short period of time!

Wendy

[wendy]

I'm also wondering if anyone has heard of Dr Richard Bowen at A I Dupont. He is the Chairman of the Department of Orthopedics and did a fellowship in pediatric orthopedics. Other than that I can't find any info. Our first appt is with him. Any thoughts?

Wendy

[Carmell]

Hi Wendy - Welcome

The others have given you great information. Remember to take all this information one step at a time. Scoliosis is not common in young children. Our very young children need to be under the care of pediatric orthopedic surgeons who have extensive experience in dealing with scoliosis in young children. Dr. Segal is a good recommendation. Dr. Bowen is a very good hip and leg surgeon, and has some experience with scoliosis. Drs. Betz and D'Andrea at Shriners in Philly have extensive experience in dealing with scoliosis in young children. Dr. Betz is the sitting president of the Scoliosis Research Society, which means scoliosis is a major focus in his practice.

Did they tell you if the scoliosis is idiopathic (meaning no structural problems with the vertebrae) or congenital (meaning there is at least one vertebrae that didn't form correctly? Where is the scoliosis located (cervical, thoracic or lumbar)? Does your son have any other medical condition that may complicate treatment for scoliosis?

Good luck with your appointments with the orthopedic docs. Make sure you have a list of questions, written in priority order. It's also a good idea to take another adult with you to HEAR all the information the doc has for you.

My best - Keep us posted.

[wendy]

Thanks Carmell. I appreciate the information. My thought is that Dr Bowen is a good first step...and possibly even a good doctor to help us through this monitoring phase. My son's scoliosis is only a 15 degree curve at this point so it will probably be a while before any action is taken. I wonder if Dr Betz and Dr D'Andrea would even see him at this point?? Regardless, if we get to a point when surgery is looking like a very strong possibility they would probably be one of the first opinions that I would seek. Hopefully that is a long way off...but maybe I am being too optimistic.

I don't really know anything about his curve so I will find out that info at our appt with Dr Bowen in September. I had scoliosis as an adolescent so I am assuming this is a genetic problem as opposed to a structural problem with the vertebrae. My scoliosis never progressed to the point of needing treatment although I do have quite the hump on my back.

Any thoughts on how height can impact scoliosis...my son has always been in the 99% for height. My husband is only 6' but my dad is 6'2" and I have maternal and paternal uncles who are 6"4 and 6"5. Does scoliosis get worse for tall people?

Thanks to all for your thoughts.
Wendy

[conni60640]

Hi Wendy. My son Billy has mild scoliosis (40°) from congenital birth defects (tilted pelvis, hemivertebrae, leg length discrepancy), and has seen Dr. Bowen since two months of age for that, his clubfoot and his leg length discrepancy. He is a great doctor, and a very personable one at that. The hospital itself is great also, valet parking, friendly staff, nice updated facilities.

We have also seen Dr. Betz and he is good also, as is the Shriner's hospital.

When is your appointment with Dr. Bowen? We have one set up for 9/29 for a six month follow-up...

[ormandy]

Wendy,

Our son just had surgery at DuPont with Dr. Bowen last week and we have nothing but good things to say about him and the hospital. He is well published and has extensive experience in the field, plus, he has a great rapport with the kids, he will put you at ease immediately. You and your son are in great hands.

[wendy]

Thank you! It is really good to hear some feedback.

Connie - our appt is on the 23rd so we will miss you by a few days.

[wendy]

We just had our first appt with the pediatric orthopedist. He confirmed that our son has a very mild curve - 15 degrees. He was very optimistic. Wants to see him back in 6 months and if the curve has progressed he will do an MRI and then brace him. If not, continue to monitor him. Said there was only a 20% chance that he will need to be braced. I am happy, yet cautious. This sounds so much more positive than I expected since he is only 8. While I know most people in this forum have only experience scoliosis that has progressed I am curious as to whether this is such a common occurence for an 8 year old...to be diagnosed but not progress. I am wondering if perhaps he meant a 20% chance in the next six months...but maybe higher percentage over the next 6-8 years. This appt was just so different that the appt with our local orthopedist who painted a MUCH less optimistic picture.

Thanks for any thoughts.

[ScolioGirl]

Wendy, unfortunately, doctors don't really know what curves will progress. They can give you the numbers, but that's it. It's anyone's guess, really. I was diagnosed when I was 9 with a 13* curve. It was watched pretty losely for three years and a year went by while the hospital backed up my check ups. That was when my curve suddenly went up to 43T/31L, against everything my doctor had predicted. So basically, spines will surprise you!

I was able to live a perfectly normal life until my curve progressed, which is great. I'm really thankful for that. And your son will be able to as well until treatment other than observation, if any, is needed.

[eileen elmendor]

hi,
my son is also 8 years old and was diagnosed with a 25 degree curve in april. at his 6 week check wearing the wilmington brace he was at a 30 degree. last week he was at a 27 degree which is really the same with the margin for error. he had an mri and does have chiari but no syrinx. we have had different opinions whether to do the decompression surgery. most say definately if there is a syrinx but i don't know if i want to wait until it does slip further. does anyone have any ideas what we should do?
we decided to go with the wilminton brace because of the lightness compared to the boston brace which our daughter wore for a year and was much heavier. everyone is wonderful at dupont and i feel is a great place to go. i am sure that if your child goes any further degree wise they will do an mri to rule out chiari. they say to take care of chiari before the age of ten if possible because of greater success rates with stopping the progression of the curve. you might want to explore this with the doctor's if the time comes and they want to brace. good luck and feel free to ask anything or your child can ask my son any questions.

[JeanZ]

My son was 8 years old when he was diagnosed last Dec 2005. He has an S-shaped curve, with the 27 deg the largest curve. Because of his young age, his pediatrician recommended a pediatric orthopedic surgeon, Dr. Cheng, at Stanford. The MRI showed no known cause for his scoliosis. He has been in a Boston brace 23/7 since he got it at the beginning of February.

His followup appointment in the brace showed that the brace was working, and he has another appointment in August 2006. He doesn't complain much about wearing the brace, so I guess for now, we will stay with it. We did not get a second opinion yet. But, I know with this, things can change with time and growth. We do have a Sacramento, CA Shriner's hospital about 3 hours away, if we choose to go there.

This doctor does not generally brace if the curvature is less than 25 deg, but other doctors are different. Good luck with your son. Feel free to ask any questions.

[mariaf]

Hi Wendy,

Welcome! I'm glad to hear that for now they will just be watching your son's curve (15 degrees is not even to the point where most doctors would brace a child).

I just want to add to what Carmell said. My son is a patient at Shriners Philadelphia. We've seen both Dr. Betz and Dr. D'Andrea. What is different about their practice, I think, is that they not only see the "typical" scoliosis patient (teenagers and adolescents, mostly girls) but many, many different types of cases - including much younger kids - on a daily basis.

You'll see my son had vertebral stapling performed by Dr. D'Andrea over two years ago. We chose this option because he was only 5 at the time and facing many years of bracing. Just another option to keep in mind IF the time should ever come where you need to take action. Hopefully, it won't come to that - but for other parents reading this as well who may be facing difficult decisions about treatment options or choosing the right doctor, I can't say enough about my faith and confidence in both Dr. Betz and Dr. D'Andrea.

Good luck to you :)

[Celia Vogel]

Wendy,

I don't have any personal experience with juvenile scoliosis, my daughter has infantile idiopathic scoliosis - she is now 5 years old. One thing I do know is that spinal growth for the juvenile period is slow and stable, so your doctor's recommendation to wait a few months is not unreasonable - however 6 months is a bit of a stretch ! Looking at the Cobb angle in isolation is not very prudent - for instance there's a family history on your side of scoliosis and even though you were never treated, your curve sounds moderate/significant :confused: Has your doctor told you what the RVAD number is ? Studies have shown that an RVAD of greater than 10 generally progresses. I would find out if the RVAD is increasing or decreasing over time. Juvenile scoliosis has the potential to progress to severe rigid deformities if left untreated - it can impact on cardio pulmonary function. If your son's curve progresses to 20 degrees, I would brace immediately ! If you wait until the curve is 30 degrees, the chances of surgery is almost 100 % with conventional rigid braces and there will be little hope for him during the adolescent growth spurt. I know this post sounds gloomy and dire, but it's best to know these things in advance so that you can take appropriate action. :) :) :)

[mariaf]

Hi Celia,

I'm just curious where the 100% failure rate comes from in curves of 30 degrees. I am not a big fan of the success of rigid braces myself - but I did not think the numbers were quite that bad. There are certainly some kids who are braced for moderate curves and are able to avoid fusion - even if a higher number do end up needing surgery. I know you read a lot and keep up on studies and things, so I was hoping to find out where you saw this.

Like you said, the more we know the better off we all are!!

Thanks,

[Celia Vogel]

Hi Maria,

It was the following presentations at 10:15 to 10:24 a.m. on PHV in the 40th annual SRS meeting. The numbers were more like 90% failure rate for curves over 30 degrees *despite* rigid bracing during the adolescent growth spurt.

http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12

[mariaf]

Hi Celia,

Thanks - I will check it out. I guess what you said suprised me because usually the first thing most doctors will do for a moderate (30ish) curve is prescribe full time bracing. Just doesn't seem to make much sense to me ???? Maybe I am missing something...

[Celia Vogel]

Maria,

I think it's the peak height velocity period that's worrisome and that's when all the trouble happens. With the exception of Deirdre's two amazing orthos, I find most orthopaedic surgeons an enigma :D

[cherylplinder]

The data on bracing is not very encouraging for larger curves.

I just don't get what the "controversy" is for Spinecor. I have no idea if this brace will work for Rachel, but the data appears to be as good or better than the data on traditional bracing.

I understand that Spinecor does not work for all curves, but please tell me- what brace does?

Why are smaller curves not addressed with Spinecor before they have a chance to progress to the category of "high risk of progression to surgery"?

That would appear to be a logical standard of treatment to me.

Maybe I am missing something.

[Celia Vogel]

Cheryl,

I totally agree with you !! When there is evidence of documented progression or clinical examination/history points to risk of progression then why not the Spinecor brace :confused: What is in the patient's best interest ????? Is it to have a fused back/pain/deformity for the rest of their natural lives ? I've heard/read of far too many orthos waiting to take action once the curve progresses beyond 30 degrees ! What is the point ?? Let's face it regardless of the surgeon's skill or expertise, spinal fusion/surgery is far from ideal. Given a choice between timely effective treatment or surgery -ALL patients would choose timely effective treatment ! I know Deirdre would have been in the very best surgical hands with Dr. Hedden and we were literally at surgery's door.... I'm so thankful we were given an alternative. If feels surreal looking back at this point in our lives because the outcome is so drastically different from the norm.

[gerbo]

I am wondering if perhaps he meant a 20% chance in the next six months.

no, i am quite sure he meaned 20 % chance that it will significantly progress at any time

with that percentage in mind, and considering he won't be growing rapidly at this stage (which is the risky time) i think you should relax for now and only if it starts moving rapidly towards 20-25 degree i would seriously consider your bracing options.

In the mean time, i'd make sure I'd keep his backmuscles active and strong, not much beats swimming in that respect, which is fun anyway.

gerbo

[cherylplinder]

Note the words "toward." When Rachel's curve started to progress, it was 15 degrees in 6 months for a total of 20 in 12 months.

[wendy]

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 % which is really nothing. We looked at the x-rays and it was remarkable. 6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant. Is this common? The doctor will see him one more time in eight months to make sure nothing has happened...will only xray if the visual looks worse. Unbelievable!

[The Professor]

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 % which is really nothing. We looked at the x-rays and it was remarkable. 6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant. Is this common? The doctor will see him one more time in eight months to make sure nothing has happened...will only xray if the visual looks worse. Unbelievable!

There are documented cases of this occurring. It's still not known why some curves resolve, some remain stable, and yet others progress.

[gerbo]

6 months ago there was a definite curve now there is just a little nudge to his spine. The visual curve to his spine is insignificant.

that is fantastic, you must feel so relieved!! Congratulations! :D :D :D

[cherylplinder]

I am so happy for you!
Hugs!

[Jacque's Mom]

Wendy, Great news about your son! I kept notes of Jacqueline's checkups, so I thought I'd post them. She is 19 and doing very well. She keeps herself extremely fit (was on a dance team all through high school and now in college). I believe (although exercise isn't a cure), that this certainly helps. Continued good luck! LYNN

DATE UPPER LOWER
1/28/98 17 13
5/12/98 20 15
9/14/98 14 13
1/15/99 20 20
5/25/99 18 15
11/29/99 15 straight
June, 00 18 14
12/11/00 27
4/9/01 21
3/25/02 20 20
6/03 return in one year - excellent progress!
6/04 18 12
8/05 no x-rays taken – no further checkups

[thesenator]

Hi Wendy and all!

It's indeed a great feeling for a parent to hear such great news about a child's recovery. You're blessed, Wendy, and your son as well!

I wonder how your son behaved and did his usual daily routine during the past 6 months. Did he take any swimming or any other type of physical activity that may strengthen/support the back muscles? Or did you both do anything together different from before he was diagnosed with the disorder?

I myself confirmed my fear in last Friday's xray of my 8yr old sweet Angelica. She has levoscoliosis with a Cobb angle of 15 degrees together with considerable back pains specially when she wakes up each morning for school.

Wasn't satisfied with our first visit with an orthopedic as he suggested that we simply come back after 6 months and check on any progression. No braces nor surgery as of now he says.

Asked if there's any management or preventive measure (from progression) I can take for my child. He replied in the negative. Such an uneventful visit. She was simply prescribed an analgesic which she may take frequently as the pain comes each morning. I fear addiction on medications. Got to look for other measures, I guess.

I'd rather do something for her during the next 6 months on any possible measures to prevent further progression as compared to simply sit down and wait; and administer her analgesics when I see her grimace (not a pretty site for me).

Am seeking a second opinion this week with a pediatric orthopedic. I love my little girl so much I'm gonna go anywhere to get the solution.

It's great to see such a very supportive group here.

Best wishes to all!

Alrey
[single-dad to sweet Angelica]
Manila, Philippines

So we just went back for our 6 month follow up. My son's scoliosis had DECREASED to 5 %...Unbelievable!

[Carmell]

Hi Alrey,

Welcome. Scoliosis in young children is not common. When you mentioned your little one has back pain in the morning, and only a 15 degree curve of the spine, that is a big red flag to me that there is something else causing the back pain, and possibly causing the scoliosis. She needs to have a full-spine MRI to see if there are spinal cord problems. A tethered spinal cord could be causing her discomfort and contributing to the scoliosis. Many things can. The orthos who have brushed you (and her) off aren't seeing the whole picture. Please consider more opinions to help determine the cause of the back pain and scoliosis. Maybe she needs a consultation with a pediatric neurosurgeon.

Good luck and keep us posted.

[LATigner]

I agree with the previous post that you might consider getting another opinion. If your daughter is only 8, she has a lot of growing to do. A 15 degree curve could easily become larger and harder to treat. At her age and curvature, if there is nothing else physically wrong, they are getting excellent results with the SpineCor brace. My daughter's doctor has braced a couple of young children with curves under 20 degrees and gotten them down to 0 or 1 degree in the brace. You might want to check out the SpineCor website, I think it's spinecorporation.com or look at the SpineCor thread under the bracing section of this forum. So many parents regret the "wait & see" course of action because usually the curve gets bigger. I only wish we had know about our daughter's curve when it was 15 degrees instead of finding it at 40 degrees.

[kbw]

Our daughter is almost 8 years old, will be having the vertebral stapling procedure the end of sept. '06 by Dr. Betz at Shriners Hospital. I would like to connect her with some other children who have underwent this same procedure (for supportand even if it is just via email communications). Shes being doing great, but I know this is very hard for her.

My husband and I are also interested to know what the post hospitalizations days were like? Our understanding is that the recovery is quite straight forward, minimal pain, only restriction will be to take it easy, no sports for 1 month. Hospital stay about 3-4 days. Just looking for feedback on initial post-surgery days and what we might expect? Per M.D. and his staff, the kids do great in general with this procedure.

:)

[mariaf]

Hi kbw,

You are in great hands with Dr. Betz. My son, David, who will be 8 in November had the same stapling procedure performed by Dr. Betz's colleague, Dr. D'Andrea, in March of 2004.

I would be happy to share any info, experience, etc. with you - on this forum, or by e-mail. My address is mariaf305@yahoo.com.

It sounds to me as though what Dr. Betz told you is pretty accurate regarding hospital stay, recovery, restrictions, etc.

take care,