Reaching out for some suggestions and guidance

[mommy227]

Hello, our daughter Rebecca is 6 years old was diagnosed with juvenile idiopathic scoliosis almost one year ago. She has a 38 degree curve and has a Wilmington jacket from Dupont for about 9 months. She wears her brace all night from 730 p.m. until 7:00 a.m. and then typically 4 days a week to school for 7 hours. Her orthopedist is happy with her progress and her wearing the brace and is concerned about her adolescent years as she will need to wear it more frequently due to a more rapid rate of growth during those years. I feel as though she is only 6 and I need to be thankful that she is so compliant for such a young girl. Our struggle is the summer time as she would rather wear the brace to school and bed not at home to play with her brother or out to play at the park or even out to stores. Does anyone have cleaver ideas on how to encourage and foster a postive way for us to have Rebecca wear her brace in the summer? Short of bridery, I am half joking and half serious. Additionally, does anyone have experience with ramping their child)ren) up to more hours a day as they grow older or do I start now? I know each child is different so different senerios work well for different children however your insight and input is graetly appreciated. Also, if anyone has insight into positive outcomes with bracing, my sister-in-law has scared me as she said that in the future her breathing could be labored, organs shifted and altered and may not walk like you or I. I am scared now more then ever as I thought we were on the right track with early detection, tratement and bracing. Your insight and input is greatly appreciated. Thank you for taking the time to respond to this thread and please know that I am here as well to discuss our children's scoliosis, bracing, etc.
Michelle

[leahdragonfly]

Hi from another JIS mom

Hi Michelle,

Welcome to the forum and I am sorry you have to deal with your daughter's scoliosis. I can definitely relate since my daughter was diagnosed at age 6 also (4 years ago), and my 7 y/o son was just diagnosed in April with a mild curve also.

I sounds like she is doing pretty well with the brace so far. Bracing is different for every child and family, some kids take to it and are much more accepting, and others (like my daughter) are resistant to bracing and upset by it from the beginning. I think in general as kids get older it is going to be extremely difficult to increase their brace time. This feeling was shared by my daughter's doctors and orthotist, too, but may not be true for every child, who knows.

My daughter got her first brace at age 6 (for a 26 degree curve) and she hated it. There were many tears and fights at our house, and it was very unpleasant for everyone. I was also braced very unhappily for scoliosis in jr. high, so it was an extremely heart-wrenching experience for me. I did my best to present bracing in a positive light and be matter-of-fact about it, but it is never an easy treatment. For us, the idea of 9-10 years of bracing was unthinkable. Added to this, our pediatric orthopedist gave Leah a 100% chance of needing a fusion in her teenage years (if not before, he said), so we did not feel this was a workable plan for our family.

I scoured the internet and through this site learned about VBS, vertebral stapling, which is an alternative to bracing for growing children. Although my husband and I were scared to death of the idea of surgery on our little girl, we travelled cross-country to Shriner's Philadelphia to see Dr Betz, who pioneered this surgery over 10 years ago. It was determined that Leah would be a perfect candidate for VBS, but they wanted her to be at least 7 or preferably 8 first, so Leah was prescribed the brace. We had to bribe her heavily to wear it. I paid her $1/day to wear it without (too much) complaining, and her grandmother matched that, so she made some good money for a 6 year-old for awhile! I think the bribery sweetened the deal a little, but bracing was still a struggle. After 5 months her curve had reduced into the teens, so we elected to take her out of the brace. Her curve stayed stable about 20 degrees for almost a year, then when she was 8 it bounced back up to 30, at which point we chose VBS surgery. I will point out that this is a newer treatment that is not routinely done at all hospitals, but it is done by a handful of centers including several Shriner's hospitals. There is also a newer procedure for larger curves, called tethering, that is also fusion-less.

Leah had the VBS surgery two years ago, and is doing great now. Her curve is now 19 degrees, and she is thrilled to be brace-free. My son's curve is 18 degrees, and although he is currently just being observed, we will opt for VBS for him rather than bracing if he is a candidate.

Your SIL may have been referring to what would happen if your daughter's curve was untreated, but this need not happen to her because there are plenty of good treatments available to prevent severe deformity. I am sorry you were frightened by her worries.

A question, did you daughter have an MRI to rule out any underlying causes of the curve? Scoliosis in young children is not common, and a full-spine MRI is usually recommended. That would be something to ask about. Also, you might consider getting a second opinion from Shriner's Philadelphia since you are relatively close, and they see probably more cases of juvenile scoliosis than any other spine center. They will formulate an individualized treatment plan for each child based on this experience, and explain all of your options fully. They do not pressure for surgery at all.

Here is a link for UCSF explaining VBS in case you are curious. http://www.ucsfbenioffchildrens.org/...ing/index.html

Best of luck, and please feel free to ask any question you may have.

[mommy227]

Thank you...

Leah,
Thank you so very much for your insight and information. You have made me feel 110% more comfortable about our diagnosis and treamtment plans in the future. I am so delighted to read that your daughter had a successful surgery and has a mild curve, did they say if she will need additional surgeries in the future? I will keep you and your family in our prayers.

Rebecca did have an MRI and they did rule out any other diagnosis at that time. I know that bracing and surgery are both scary options and I am so glad that there are new procdures out there to help children, such as ours, to have alternative options.

It is challenging as a partent and a child to have to experience these struggles.

I will review the website that you have provided as well, thank you.

I like the idea of the 1.00 per day and then her grandparents matching, that is great insentive to have Rebecca wear her brace in the summer time. We are going to try lots of swimming this summer as well.

How is your son doing with his diagnosis. i will keep an extra watchful eye on our son who is only 4 years old.

Michelle

[mommy227]

Do you mind...

How do you cope with the stresses and challenges of your daughter as she was in her brace? How did you explain the importance of the brace? Thank you again.

[leahdragonfly]

Hi Michelle,

Our son so far has only had the recent x-ray and a visit to the pediatric orthopedist, so for him his life is unchanged. I try not to mention scoliosis to either of them much, but I always make sure they know I will answer any question they have. I think at this age it is so important to try and explain things in a way they can understand, without scaring them about years and years of brace wear or possible future surgeries. I try to explain things to them as they come up. Unfortunately my son already told me he will not wear a brace, no way no how. He remembers our struggles with our daughter. He knows that surgery may be in his future, and since he saw how well Leah got through it, he is not overly fearful of it.

As far as my daughter, I tried to be as matter of fact as possible. I let her see her x-rays, and pointed out that the curve was "just a little curvy" because she confided in me originally that she was afraid her back was shaped like a pretzel inside. She was really relieved to see and hear how the curve actually was, vs what she feared it was. That was an eye-opener for me. I explained to her that the doctor wanted her to wear the brace so that the curve would not get more curvy as she grew. I always told her that the brace would not make her back straight. I never threatened surgery as a negative consequence of failure to comply with brace wear. I have heard of too many parents who threatened their children that they would need surgery if they did not wear their brace enough, then the parents had created an unnecessary fear of surgery in the child that became a problem if the child actually needed surgery later. I always let Leah know that surgery was a possibility, that she would have some say in the decision, and that we would stay with her and take care of her if she needed surgery. When she asked how long she needed the brace, I would tell her that I didn't know the answer to that (truth), but that her doctor had asked her to wear it at least until the next x-ray. Of course as she got older she wanted to know more details and I tried to give them as I thought was appropriate.

We are hopeful that VBS is the only surgery Leah will need, and her doctor shares that hope and expectation. The odds we were given were 80% chance of not needing any further surgery. To us that sounded so much better than brace for 9 years then fusion for sure!

I cope with the stress and uncertainty of scoliosis by learning everything I can about scoliosis and treatment options. For me knowledge is power. Over time you will fall into more of a routine that includes the brace, and it gets easier to cope with the stress of having a child with a long-term orthopedic condition. I don't want to wish for my kids to be grown up too soon, so I try really hard to not focus on the scoliosis and just enjoy their childhoods as much as possible. I still get nervous before their x-rays and dr appts, but I think I have come to a place of acceptance that we also have this condition to deal with. I gain a lot of support from this forum and another, located at www.vertebralstapling.com. The latter is run by several moms who have kids who have been braced and had stapling. There are quite a few families there who have JIS kids, more than here, and we spend plenty of time discussing bracing and how to cope, and not just surgery. Feel free to check it out and join us if you wish.

I hope the $ incentives will help over the summer with your daughter. Swimming is also a great thing for them, and some doctors let it count as in-brace time. Glad to hear her MRI was fine.

Let me know if you have any more questions.

[mariaf]

Hi Michelle,

Welcome!

I co-moderate the VBS site Gayle referred to, and my son was diagnosed at a very young age as well (before the age of 2). He was braced for a few years and then before his 6th birthday, he had VBS (they do prefer to wait now until 7 or 8 years of age before performing the procedure). David is 13 now and doing very well (see my signature for more info).

We, too, found the prospect of a decade of bracing, with no guarantees, very unappealing. To answer your question, VBS is a one-time surgery. If successful, the plan is that no further surgeries would be needed.

I don’t want to write too much and overwhelm you. What I would strongly suggest though is a consult at Shriners Hospital in Philly. That does not mean you have to go ahead with VBS/surgery, but they are THE experts when it comes to JIS. We live in New York City, close to many ‘so-called’ top doctors but have been making the trip to Philly for over 8 years because when it comes to this sort of thing, they are THAT good.

I would not wait for fear that if your daughter’s curve were to increase, then your options would become more limited – I’m not saying that she will progress, buy why not try to keep all of your options open?

The person to talk to at Shriners is Janet Cerrone at janetcerrone@comcast.net or 1-800-281-4050. Janet is the Physician’s Assistant to the entire spine team in Philly and has been involved with VBS since its inception over a decade ago. In addition to being very knowledgeable, she is extremely nice and helpful. Feel free to tell her Maria and Gayle referred you (she knows us both).

Please feel free to ask me anything or even email me if you like (see my signature for address).

Best of luck to you and please keep us posted!

[Resilience]

Summer Bracing

Hello and Welcome.

My daughter wore a Boston Brace for a year and a half. Last summer was a challenge for us all: the lack of typical routine of the school year, more activities and the hot weather. I just wanted to share what we did, and of course would not recommend or advise anything for your daughter. With the OK from our specialist we let her be as active as possible without her brace: Days at the beach and the pool, amusement parks, sports camp... The week we were in Hawaii she really just slept in it. Pros and Cons of this for my daughter who was 9 last summer: Pros: Her curve did not increase despite limited wear, she had an active summer, it felt like the right thing to all of us... Cons: it was a bit more difficult getting her to wear the brace when she did wear it: for down time days for example.

I'd also like to mention to frequently change your daughter's undershirt when it's damp so she doesn't develop a rash and my daughter liked pulling the straps of her undershirt up and over the top of the brace so her shoulders could be free.

My daughter recently had VBS so I agree with all that Gayle and Maria had to say above. Just wanted to share our experience of Summer in the Brace...

All the best to you and your daughter.

[Lorraine 1966]

I was wanted to say how very very pleased that the VBS is working for your children, that is so wonderful. All I want to do is encourage you all and to say hi to Mariaf, its been a while my friend.


Lorraine.

[mariaf]

Hi, Lorraine!!!

How have you been??? Hope all is well on your end.

In case you missed it, there's also another fusionless technique that is being used now (often referred to as 'tethering'). It is similar to VBS in many ways, but can be used on curves over 35 degrees (VBS is generally most effective for curves under 35 degrees). Although it has only been around for a few years, thus far, the results with tethering have been very promising.

Great to hear from you.