I feel like a mean Mother!

[vsm4121]

Hi! I need some help. My daughter who is 10 has been put into the Boston Brace about a month ago. When she saw the X-rays of her back before and the ones with her brace on, she was amazed and so were her Dad and I. But she got sick and we allowed her to take it off for a couple of days because she was vomiting, etc.

Now she's trying to come up with a lot of excuses not to wear the brace. I feel awful because I feel like I'm being such a mean Mother for insisting she wear it.

She's not having problems at school with kids teasing her or anything. All our family members are supportive so I know this isn't the issue. It's just that she doesn't want to wear it! The thought of bribing her passed through my mind, but that's not something I want to do especially since she's supposed to be in the brace for 23 hours a day....that could get expensive.

I'm just at a loss of what to do about this. Do you discipline your child for something that they and yourself already feel is an undeserved punishment??

[sue821]

vsm...

That is certainly a tough situation and I don't envy you. Many, many years ago I was the child that had to wear the brace. With my parents there was no middle ground - I couldn't take it off for any special school activities or any other special occassions. I have no idea why I didn't rebel, but I didn't...they pretty much had me scared into thinking that without the brace I would end up a mess. Discipline I don't believe is the answer, but if somehow trying to understand what she is going through and to acknowledge the pain that she is going through right now. It really doesn't matter that the kids aren't making fun of her...she feels different and believes that everyone sees her differently. She somehow needs to understand the importance of wearing the brace - whether that is you or another visit to the doctor. Then...I would suggest telling her that she will be able to remove the brace for very special things that come up for a few hours and that is the only concession. She needs to know that she has to wear it, you don't need to bribe her but you can cut her some slack when she needs it. A few hours out of the brace is nothing compared to not being understood at all.

Sue

[sins]

As a mother now, I can understand how you don't want to do anything to cause distress to your daughter.I started with a 45 degree curve.My mother gave in to my constant complaints about my brace and between that and other circumstances, my curve ended up at 110 degrees thoracic/60 degrees lumbar and I now have 49% lung capacity.
Scoliotic curves can travel fast in a young girl.Tough love is the order of the day.I suggest you sit down with her and gently but firmly explain to her the possible repercussions of not wearing her brace.She may object strongly and make you feel guilty now, but she'll thank you in later years for having the strength to make her wear it now.
When she reaches adulthood,you will be able to sit down and say to yourself(and to her)that you did everything you possibly could to have her scoliosis corrected.
Don't be so hard on yourself though,there is no way to isolate yourself from your emotions.Just keep doing your best.
Sins

[sue821]

"Sins" is a perfect example of exactly what can happen with not wearing the brace and she is absolutely right in being firm. After talking with your daughter let her read these posts from those of us who have been down the same road. That was 35 years ago for me. I hated every minute of it, but it became part of me. After a while my back actually felt better with it on. The time goes fast and before she knows it she will be able to go to school without it. When that happens, it is no big deal. For me the brace did its job and maintained the curve...it does work when it's worn. Let us know how it goes - my heart goes out for both you and your daughter as I understand both sides!

[KRIS ATKINSON]

Just a thought from a mom of a daughter who wore a brace faithfully 23+ hours a day for nearly 2 years and recently had surgery. In our case, the brace was our choice but she was already borderline for surgery, around 40+ degrees. Her doctor gave about a 50/50 chance of her still needing surgery after trying the brace, at the time we decided to get the brace. I was fortunate that my daughter was determined to avoid surgery, so she faithfully wore the brace, although she was extremely embarrassed to admit she wore it. If your doctor has given a good prognosis for wearing the brace, do as the others recommend on this forum and find a way to convince her to wear it. If, however, the doctor doesn't see much chance of improvement, you may want to talk to the doctor about her attitude some more. I hope she has a really good chance of improvement and can avoid surgery!!! Good luck! I have to admit, my daughter did get special permission for certain things to be done, such as having her brothers climb into the back of the van so she didn't have to bend so much, pick up stuff for her like balls. I also helped break the news to the neighbor kids who would come play basketball and wonder why she had so much trouble bending over to get the ball. She was very embarrassed, but wore it anyway, with her usual t-shirts and pants. What are your daughter's curves? Kris

[vsm4121]

Thanks for all the feedback. I sat down with her the night before last and was honestly brutal with her. She's very stubborn and sometimes that's the only way to make her understand.

So what I did was, I took one of her bendable pencils and formed it to shape her spine, which by the way is an unusual curve. Her spine looks like a paranthesis ). Then I bent it a little more because I told her that her curve is getting worse so let's see where you'd probably be in a year or so. Then I took a regular straight pencil and proceeded to pull and tie the bendable pencil to the hard one. She did not like seeing that one bit! So I told her that if she didn't like seeing that, that she better begin wearing her brace as the doctor's has instructed her to do or that was going to be her reality. And that if she thought that not being able to bend or put on her own shoes/socks or polish toe nails, etc was a pain with the brace, imagine what the rest of her life would be with the rod put in.

Well it must have worked because she's been wearing it with no problem. As a matter of fact, she woke up about 10 minutes before the time I usually get her up and went to the restroom. She then came to ask me if it was ok if she left it off for a few minutes until she got dressed for school. (she wears her uniform pants under her brace).

I know there may be some parents who will feel I was a bit harsh, but I felt I had no other choice. My ex-husband and I have dealt with major health issues with both of our daughters from birth. Our oldest was born with heart disease and underwent surgery in 2000. My little one who wears the brace went through seizures as a baby and toddler and had other issues later as a result of that. Also, Scoliosis isn't the only disease she's battling, she's also been diagnosed with Osteoporosis and because her bones are weak, the scoliosis had increased from 15 degrees to 40 in two months. But even going through those things, seeing your child so confined is heartbreaking, and I am only looking out for what's best for her.

[LindaRacine]

Hi...

In "The Scoliosis Sourcebook," Dr. Michael Neuwirth writes:

Clearly, the orthopedist, the child, and the parents must consider the psychological and emotional impairment that braces can cause among teenagers. For instance, if I have recommended a brace for a 13 year old with a 30 degree curve and the child repeatedly insists that the brace would make him so miserable and unhappy that he'd refuse to wear it, I probably won't prescribe one. If the child will not waver from this refusal, I eventually tell parents that no matter how tough they are, they can't make the child wear the brace. I do not believe the physician should serve as the patient's police officer. Compliance with the bracing schedule ought to be a shared responsibility among the physician, family, and patient. I try hard to get patients to wear their braces through education rather than intimidation. But if a patient shows no sign of compliance, it becomes necessary to forgo the brace and go back to observing the natural history of the curve, that is, what happens to the untreated curve. If the curve gets worse, then it gets worse. And ultimately, the curve may reach a magnitude that necessitates surgery.

I personally think that there are some kids who will not wear the brace, no matter what they're told or how they're disciplined. I've heard dozens of stories of kids who removed their braces as soon as they left the house. If you've got one of the those kids, I think it's probably futile to continually make it an issue. You have to ask yourself if it's worth the stress it will put on your relationship. If it were my child, I would want to ensure that the child truly understands what surgery involves, and that surgery is likely if they don't wear the brace. However, I'd be careful about trying to scare the child too much, as I'd then have to deal with that if/when the time comes to actually have surgery.

Best of luck with all of this.

Regards,
Linda

[vsm4121]

I've also read about kids taking their braces off during school. One good thing on my side is that she goes to a private school, probably 250 students from K-8th grade. Her teachers, the Principal, Aides, lunch helpers, etc are all aware that she needs to wear it and they will not hesitate to contact me if they have questions or concerns.

Thanks for your advice.

[Celia]

It is a very difficult time for both of you ! I was thinking that after a period of time, if you see that the curve is stable perhaps your daughter can move into night time bracing with a bending brace such as the Charleston bending or the Providence brace. Here is a VERY interesting SRS discussion on nighttime vs full time TSLO brace wear. It's the discussion at 9:33 a.m. I think the type of curve your daughter has would play a very important role in whether she can go into night time bracing:

NIGHT-TIME BENDING BRACE v. A TLSO IN THE TREATMENT OF ADOLESCENT IDIOPATHIC SCOLIOSIS: AN IRB PROSPECTIVE RANDOMIZED TRIAL



http://www.istreamplanet.com/srs/def...a&conf=1&edi=4

[Cakedec]

Are they treating her for osteoporosis?

[ Scoliosis isn't the only disease she's battling, she's also been diagnosed with Osteoporosis and because her bones are weak, the scoliosis had increased from 15 degrees to 40 in two months.r.[/QUOTE]


Are they treating your daughter for the osteoporosis? I have read that osteopenia and osteoporosis are very common in people with scoliosis, and may even be a large cause of it. I hope that the doctors are addressing this in her with supplements or bone building meds; otherwise it seems that bracing could be detrimental or at least not much use if the spinal bones are too weak to bear the pressure or not growing correctly.

[Sheena]

i had a plastic jacket....

i know how your daughter feels a bit. i wore a plastic jacket, and at first i came up with excuses not to wear it, and then i got used to wearing it. when i was told i didnt need to wear it anymore i didnt think i could cope, i needed to wear it. now im fine! its strange, but dont worry about being firm. im sure she knows deep down that your right!
keep smiling!
sheena xx

[Celia]

[QUOTE=Cakedec ....otherwise it seems that bracing could be detrimental or at least not much use if the spinal bones are too weak to bear the pressure or not growing correctly.[/QUOTE]


That's interesting ! I know nothing about osteoporosis and bracing but are you saying that if she wears the brace it could make her bones weaker ? I think there was a study done by Dr. Emans which dispels that myth.



J Pediatr Orthop. 2005 Jul-Aug;25(4):423-8. Related Articles, Links


Bone density accumulation is not affected by brace treatment of
idiopathic scoliosis in adolescent girls.

Snyder BD, Katz DA, Myers ER, Breitenbach MA, Emans JB.

Children's Hospital, Boston, Massachusetts, USA.

Bracing for adolescent scoliosis has been postulated to cause
permanent loss of bone mass and to predispose to adult osteoporosis.
To determine whether brace use affects the rate of bone accretion
with growth, the authors conducted a prospective study of 52 girls
with adolescent idiopathic scoliosis. Dual-energy x-ray
absorptiometry (DEXA) showed a significant increase in spinal bone
mineral density (BMD) over a 1-year period of brace wear. BMD
correlated with measures of growth and pubertal status, but not
average daily brace wear or severity of scoliosis. The annual rate of
bone density accumulation was similar to reported normal values. The
annual rate of change of volumetric bone density increased only
slightly during the study period, suggesting that most of the change
in BMD with time reflects growth in the dimensions of the spine.
Brace treatment does not appear to inhibit bone density accumulation
in girls with adolescent idiopathic scoliosis.

PMID: 15958888 [PubMed - in process]

[vsm4121]

She does see a Specialist for the Osteoporisis along with her Ortho. Both doctor's are at Loma Linda and review each others charts, etc prior to her appointments so they are fully updated on her conditions. She also has her doctor at Shriners too.

As for the Osteoporosis, she is being treated with Fosamax. She takes this every morning like clockwork. And periodic bone density tests are done. But all of this came about so suddently. Last Sept.2004 she had her annual physical and as always they check for Scoliosis and there was no sign of it. In November she began complaining of back pain and I gave it a week or so thinking it was growing pain. After that I scheduled an appointment to see what was going on. Her doctor discovered the scoliosis, but it was very very mild at the time and sent her for x-rays. There was nothing in the x-ray to validate her pain, but she was constantly having it. This went on for a couple of months and I think her pediatrician was getting frustrated because each time the pain was in a different place of her back. She was on Tylenol and Motrin and this wasn't helping much anymore. They even had her go through a couple of months of Physcal Therapy because they thought she was having pain due to stiffness.....FINALLY, they decided to send her for an MRI and send her to an Ortho. With this they found what they thought were three tumors called (Hemangioma) at T8, 10 and 12. So we researched all we could on that and the treatment. He decided to have the MRI read by a Radiologist who specialized in these tumors and he said it wasn't, it looked like Osteo. They were shocked because Osteo rarely affects children and she by no means fit the criteria of the few they had seen with it prior to her. So they did a CAT Scan and a bone density test and it was confirmed. She began the Fosamax in July.....yup, it took months for them to figure what was going on!! We thought the Osteo was our biggest worry until she went back for a follow up appointment and the Ortho discovered how much the Scoliosis had progressed. And that's where we're at now..............it's been a journey and not an easy one, but we do count our blessings that the first diagnosis of the tumors was wrong.

She's always been an active child. She's danced and performed since she was 4 and swims like a fish.

[Cakedec]

J Pediatr Orthop. 2005 Jul-Aug;25(4):423-8. Related Articles, Links


Bracing for adolescent scoliosis has been postulated to cause
permanent loss of bone mass and to predispose to adult osteoporosis.
.................................................. .....................................
Brace treatment does not appear to inhibit bone density accumulation
in girls with adolescent idiopathic scoliosis.

PMID: 15958888 [PubMed - in process][/QUOTE]


Thanks Celia Vogel for sharing this article.
As a mother, I would have wanted assurance that the brace would not cause further damage to a daughter with osteoporosis' spine. Evidently other people and/or doctors also postulated this same idea and so a study was done to give reassurance that the bracing is safe.

[vsm4121]

opps, I forgot to address that issue.

Both of her doctors feel that by her being in a brace is probably the best thing for the Osteoporosis. I didn't mention that what they felt were tumors were actually fractures in her spine. So with her being braced, it will give those fractures a chance to heal properly. And when she is wearing it, she is not in as much pain as she was without it. But she's only been in treatment for a few months with the Osteo and a little over a month with the TLSO brace, so I'll update when she had return visits with all her doctors in March.