My sweet 8 yr old daughter is about to get her first brace

[Resilience]

Mike and Gayle,

Thank you both for your voices of experience. Discussing the differences between tight, uncomfortable and pain with my daughter has been helpful.

I am compiling info to send to Shriners in Philadelphia for review. I'd like to read more about long term data on VBS. It certainly sounds appealing.

Right now I am drained with where my family and I are at in this process. My daughter is having her ups and downs. We've found that she has less redness on her anterior rib area if she sleeps on her back in the brace compared to trying to sleep on her tummy, which she would prefer. This has led to disrupted sleep for the whole family as we support her through this. Since the brace adjustment my daughter has been able to resume her love of monkey bars in brace so she is very happy about that and I am thrilled that she can participate in this activity with her friends again at recess.

My older daughter is having some hurt feelings as so much attention is given to her sister, so I am making special time for her.

I always felt that my life was busy enough as a working mom. Now I feel like I have another huge commitment to add to my list; it's taken top priority actually. Thanks for listening. I appreciate having found this forum and people going through this process with their children.

[Resilience]

update for the new year:

We have compiled my daughter's xrays and doctor's notes and have sent them to Shriners in Philadelphia for review re VBS. Waiting to hear back.

Day to day is ok with the brace, some skin irritation and some negotiating on my daughter's part to have time out of it. expected. We are using the special undershirts, Hydrocortisone Cream, Aveeno bath wash and baby powder. Any other advice? We have an appointment with the Orthotist this week to see if he can create some air holes.

She continues to do swim team and we've incorporated an exercise routine based upon core strengthening, torso rotation and stretching.

She asked me the other day about how long she will need to wear it, I cowered out of it by saying we don't know, will have to see what the doctor says at the next visit and go from there. I don't want to keep the full truth from her, yet so many unknowns, and she's so young, how can she wrap her head around "until she reaches skeletal maturity unless she requires surgery prior to that?" Or we elect to go the VBS route if she qualifies.

Looking for guidance in how you've dealt with your children through all of this, being so young, how much information should I share with my daughter?

Thanks NSF for having this forum. Very helpful.

[mamandcrm]

Hi Resilience,

Every kid is different and you know your child best. For us, we told our daughter the full truth from the get-go and she dealt with it fine. When we didn't know, we said we didn't know, what we did know, we told her, if she asked. The only tears she had was over the prospect of having VBS which we considered, and rejected for a couple different reasons. We felt what was best for her was to know she could trust us, no matter what--to tell her the truth, to always do our best for and protect her, to support her, and that it was going to be OK, whatever happened. She was 7. That was what she needed. Good luck with your VBS appointment. If rashing is a problem, we found in the beginning that spray-on hydrocortisone worked well (let it dry before putting the brace back on). Lotions can create additional moisture and irritation. Our orthotist advised us to use corn starch, no baby powder, though we've not needed it. With the RC brace, my daughter could have tons of ventilation holes in her brace with no adverse consequences. I don't know about the Boston brace.

[mariaf]

Hi Resilience,

I’m glad you’ve sent everything off to Shriners. I know that Janet was out on vacation last week, yesterday was her first day back, so you might want to follow up with an e-mail or phone call to make sure she received everything. I also know that she isn’t bothered by ‘reminders’ from parents.

I’m not sure about whether or not the air holes would compromise the integrity of the brace or not (sorry) – at least the weather is cooler now. I found that bracing and summers are not a very good fit. David was always so hot that we tried to keep him indoors in air conditioning as much as possible. Luckily, he was braced when he was younger so it was MUCH easier than it would be for him today being an active 12 year old who is constantly outside riding his bike, shooting hoops, playing baseball, etc. I know all too well, from my experience and that of others, that most kids will definitely try to negotiate for time out of their brace.

As for surgery, David was 5 when we looked into VBS and from what little he could understand, he was not at all fearful of having it - and looked forward to freedom from his brace. I tried to be honest, while keeping things on a level a 5 year old could understand. I told him to expect to feel crummy for a few days after surgery (like when he’s home with the flu, etc.) but that mommy would be with him the entire time and they’d take very good care of him. If you seem calm and confident about things, your daughter will follow your lead and be more relaxed. He did great with the surgery and recovery – and after a few weeks there was no keeping him down and he had put it all behind him pretty quickly. He does happen to be an easy-going, roll-with-the-punches kind of kid :-)

Best of luck and please keep us posted. If there is anything I can do, or if there are any more specific questions I can answer please feel free to ask – and feel free to email me any time as well.

[leahdragonfly]

Hi resilience,

Like Chris above told you, you know your child best and know how much to tell her. In my personal opinion, I always try to tell my kids the truth in a way that they can understand and is age-appropriate for them. Kids always know when their parents are trying to keep information from them, and really it scares them. They think, If this is so scary that Mom and Dad can't tell me about it, it must be terrible. I think this can allow sensitive children in particular to have their minds run away with them.

I was completely truthful with my daughter when she was diagnosed at 6. I tried to explain everything to her in a way she could understand, which is definitely tough at these young ages. I told her she had a choice of wearing her brace for 8-9 years, or that if she wanted there was a surgery (VBS) that might allow her to be out of the brace. I think it is a big mistake to use the possibility of surgery as a threat to force brace compliance, because if you make surgery out as a negative thing, what do you tell her later if it becomes necessary? This is especially true with JIS kids who have such a high likelihood of surgery. My daughter truly hated her brace from the beginning, and so for her she always knew she wanted VBS, which she had very successfully this past May. She did amazingly well with surgery and returned to school 10 days after her surgery, no problem. Peace has returned to our home because there is no more arguing or tears about the brace. It was a good choice for us.

Like Chris said, each child and family are different, and I am sure you will find a way to answer your daughter's questions. For my two cents worth, I would really try to find a way to give your daughter the information she wants and deserves to know. It will make things easier later.

Good luck, it sounds like you are doing a great job so far. I think it is extra hard on us mothers who also underwent scoliosis treatments, to now have to see our children enduring them. I know this has been the case for me, definitely.

Gayle

[mamandcrm]

I didn't mean to make VBS sound like a bad choice. I don't think it is. We actually had a VBS surgery date for a for a period of time. It just wasn't the right choice for G--her curve* was at the very outer edge, and we just didn't have the confidence that we would get the result that we were looking for. And she wanted to try full-time bracing first--the idea of surgery just really scared her (which I did not expect but she likely would have gotten over). We also were very encouraged after talking to other parents with children in the RC brace, and, in the end, felt very sure that was the best choice for her. I think doing your research and then following your gut instinct is the right thing do. That leads people in different directions. I don't rule out considering VBS again if things go south.

[jrnyc]

i think a key word is age appropriate, as Maria and Gayle said!
parents know their kids best, and know how much they can handle at one time...
overloading a child doesn't help...it usually instills fear...

keep it age appropriate, and add info as the child can handle it..or when they ask for more...

that is just my advice, from 25+ years with kids, including as a counselor...

but mama usually knows best!

jess

[mariaf]

Hi Jess,

While mama may sometimes know best, I'm sure I'm not the only one who appreciates the benefit of your experience with children :-)

Thanks for confirming my gut instincts about how to deal with talking to kids about this stuff!

[jillw]

Resiliance,

Like you, I didn't think my daughter could possibly grasp (at the onset) that she would wearing a brace for several more years than her entire life had lasted up to that point. I gave her the truthful, albeit limited information, that the doctor would tell us how long. If she had asked more questions at that time we would have gone into more detail, but she was satisfied with the answer so we left it at that. (kind of like when they start asking about the birds and the bees. When they first ask about where babies come from they might not be ready to hear about STDs and the kama sutra haha) When she started asking again some time had passed and she had adjusted to brace wearing a bit better. She seemed to want to know a little more so i gave another truthful, yet limited , answer that the doctor would tell us,but usually people have to wear braces until they stop growing which means it would be for many years. She was satisfied with the answer at the time. A year later she asked again and followed up with the question of how long people grow. That's when I went into more detailed information and while it was a lot for her to digest, she understood it better. Not to mention its less scary for a 9 year old to hear that they may have another 6-7 years in brace than it is for a 7 year old to hear it will be close to a decade. I don't know if my daughter will ever be a candidate for VBS (right now her curve is too small and since the window is somewhat narrow we face the possibility that if her curve progresses it might end up being too big for VBS); however, when we talked about time in brace, I did also talk about VBS so she realized there is a chance that if wearing a brace became too much there could possibly be options. She was totally ANTI surgery (just scared, which was fine because her curve was too small at the time), but recently she mentioned that she wouldn't mind getting VBS if she qualified. If brace wearing gets to be too difficult for her, I might allow her more out of brace time and see what happens with the hope that any progression would still be within VBS levels (and that by then the backlog at Shriners Philly would be gone ) . Good luck

[Resilience]

Thank you all for your support and wisdom!

I am truly moved by the kindness of strangers.

I am taking notes, literally.

[mariaf]

Resiliance,

Like you, I didn't think my daughter could possibly grasp (at the onset) that she would wearing a brace for several more years than her entire life had lasted up to that point. I gave her the truthful, albeit limited information, that the doctor would tell us how long. If she had asked more questions at that time we would have gone into more detail, but she was satisfied with the answer so we left it at that. (kind of like when they start asking about the birds and the bees. When they first ask about where babies come from they might not be ready to hear about STDs and the kama sutra haha) When she started asking again some time had passed and she had adjusted to brace wearing a bit better. She seemed to want to know a little more so i gave another truthful, yet limited , answer that the doctor would tell us,but usually people have to wear braces until they stop growing which means it would be for many years. She was satisfied with the answer at the time. A year later she asked again and followed up with the question of how long people grow. That's when I went into more detailed information and while it was a lot for her to digest, she understood it better. Not to mention its less scary for a 9 year old to hear that they may have another 6-7 years in brace than it is for a 7 year old to hear it will be close to a decade. I don't know if my daughter will ever be a candidate for VBS (right now her curve is too small and since the window is somewhat narrow we face the possibility that if her curve progresses it might end up being too big for VBS); however, when we talked about time in brace, I did also talk about VBS so she realized there is a chance that if wearing a brace became too much there could possibly be options. She was totally ANTI surgery (just scared, which was fine because her curve was too small at the time), but recently she mentioned that she wouldn't mind getting VBS if she qualified. If brace wearing gets to be too difficult for her, I might allow her more out of brace time and see what happens with the hope that any progression would still be within VBS levels (and that by then the backlog at Shriners Philly would be gone ) . Good luck

Great post, Jill.

And I happen to think your approach was a very wise one. Kids, depending on their age, can't really gauge time anyway. And while you were never dishonest with your daughter, you gave her the information a bit at a time, based on what she needed to know at that moment. Even for adults, sometimes too much information about what MIGHT happen isn't good.

Again, the bottom line that I think we all agree on is that, as parents, one should go with their gut about their child because mom usually knows them better than anyone.

[Resilience]

Update on my amazing daughter:

Day to day life with the brace is going as well as can be expected. We have the clothes pretty much figured out. The air holes have helped the skin irrigations. She's sleeping well. The orthotist spilled the beans about length of time, years, and my daughter processes it in a very matter of fact way, considering what color her next one will be.

Meanwhile, I've been in contact with Janet at Shriners in PA and we have a consult scheduled there in April. From reviewing her records Janet feels she will be a candidate for VBS if we decide to go that route. I've discussed VBS with our specialist here and he does not perform this procedure, he's doing studies on tethering in animals and humans in other countries and feels that will be the next thing better than stapling but the time frame will not work out for us. He is friends with Dr Betz though, and would be happy to co-treat my daughter.

Thanks again for all of your support. I'll let you know how our trip to Philly goes!

[Bigbluefrog]

Update on my amazing daughter:

Meanwhile, I've been in contact with Janet at Shriners in PA and we have a consult scheduled there in April. From reviewing her records Janet feels she will be a candidate for VBS if we decide to go that route. I've discussed VBS with our specialist here and he does not perform this procedure, he's doing studies on tethering in animals and humans in other countries and feels that will be the next thing better than stapling but the time frame will not work out for us. He is friends with Dr Betz though, and would be happy to co-treat my daughter.

Thanks again for all of your support. I'll let you know how our trip to Philly goes!

Our children are amazing! The inner strength and acceptance of the hand dealt to them....is always amazing to me.

I have not heard of tethering...do you know more about it?

I wish you the best in your decision. I have read many good points on VBS, but we were beyond puberty point.

Wonder how the staples work with growth? Or any surgery for that matter. My dd grew quite a bit in the brace. We use a combination of therapies with success.
Yes, we have a team of specialists from orthitist, orthopedic surgeon, pediatrician, PT therapists, massage therapists, and a chiropractor.

As parents, we will do whatever it takes to help them be healthy.

If you do the VBS, I believe there is a forum website that has many who have participated with success.

[mariaf]

Hi Resilience,

Your daughter does indeed sound amazing!! I have often said that these kids could sometimes teach us adults a thing or two :-)

Glad to hear you have contacted Janet - and good luck at your appt. in April. I'm also happy to hear that your local doc and Dr. Betz already know each other. Dr. Betz does seem to have an excellent relationship with a lot of orthos, perhaps because he is so well respected.

Thanks for the update - please keep us posted.

[Resilience]

I have not heard of tethering...do you know more about it?


My understanding about tethering is that where the staple is hard on 3 sides the tether has 2 hard anchors and a softer material in between to allow more flexibility and space for the disc. Janet at Shriners said that they are starting to do tethering already. Sounds like Dr. Newton has patten for a specific tethering device which he wants to use in the near future. (To his credit he was fully open with me about this) and of course it's easy to find on line.

Thanks everyone for your support and best wishes to you and your families!