sleeping in a brace. Help!

[Katya]

My soon-to-be seven-year-old has very hard time adjusting to sleeping in rigid brace. I can persuade her to go to sleep in it, but after 2-3 hours she half-wakes up crying, disoriented and hysterical. At this time it is absolutely useless to talk to her, she does not understand us. We usually end up taking the brace off (and she is so hysterical that sometimes even fights us at this moment).

It has been going on for six months. We are absolutely exhausted and frustrated, because the brace is not being worn, and all the efforts are in vain. Does anyone have any tips?

Today I learnt about spineCor brace. What is the experince of younger children who have to wear it at night? Can anyone share?

[lelc2002@yahoo]

I have adult scoliosis & wore the milwaukee brace as a teen. I was wondering why your doctor has your daughter wearing the brace to sleep in?? I can see all day but just was wondering???? Ly
http://lynnebackattack.blogspot.com

[gerbo]

after 6 months off fighting i think you have little chance of turning that situation around as she has found that "playing up" (however understandable) is resulting in the brace being removed. This will be very hard to turn around as the pattern is engrained.

If you still want to try; 1) ensure that the brace is as well fitted as possible 2) a soft mattrass topper can make it more comfortable at night 3) mild night sedation for 1-2 weeks might just about break the cycle 4) and with all this; whatever happens, and however heartbreaking; do not give in and refuse removing it.

alternatively, there is a very long spinecor thread on this forum, where you find lots of info. The youngest child I know about had just turned 5 when she got her spinecor

What is the curve of your daughter, what level and what angle??

best wishes

gerbo

[Celia]

Today I learnt about spineCor brace. What is the experince of younger children who have to wear it at night? Can anyone share?

Hi Katya,


My daughter had just turned 5 when she got the Spinecor brace and she has been wearing it full time for a little over a year and I can tell you that she absolutely has *no* problems sleeping with the brace. The Spinecor brace is unlike any conventional rigid brace and children can move freely in it with no restrictions whatsoever. It's virtually invisible underneath clothing. Her curve is holding at "1" degree so we are *very* pleased with the brace - I highly recommend it for young children with curves under 40 degrees. I think once the curve gets above 40 degrees, a corrective cast for a short period of time would be my choice.

[christine2]

Hi Katya

My daughter is 6 and has been wearing the spinecor brace for 3 months. She has not complained once infact it is like pulling teeth to get her to take it off. She started with a 33 degree curve and went down to a 7 and holding. We went to Montreal. From want I have read proper placement of the brace is very important that is why we decided to travel that far.

The docs said that she would probly be in spinecor for 18 months to 2 years then may need to go back in during puberty. The spinecor is designed to correct curves and train the muscles to hold the correction were as rigid braces just keep curves from increasing.

My daughter plays hockey, gymnastics and all her fun childhood stuff in brace with no problems. Please feel to private message me if you want to talk further.

Christine

[Katya]

thanks so much!

Thank you all so much for so many answers and reactions to my thread! I am new here and did not expect such an immediate and cordial reaction!

Masha's X-ray from June showed 30* upper curve and 18* lower (no rotation ). I am not quite sure what you mean by "level", I am not familiar with English terminology in this area yet. But as far as the curvature is concerned: by now it is more advanced, I can see it - I had scoliosis as a child and had a surgery, because bracing, mud wrapping, electro-stimulation, exercise therapy and massage taken in a special facility in the former USSR - where I am originally from - did not help. However, thanks to 8 years spent in a school for kids with soliosis I usually can "evaluate a back" pretty well just by looking at it .

Masha is growing very fast (by far the tallest kid in her class) and the scolio progresses as she grows. The problem with sleeping in the brace - even though I may be partial - is not just a discipline problem. I put the brace on her at 7 pm - no problem (but no enthusiams either), she goes to sleep in it and after 2-3 hours the problem starts. I tried sedation - it makes it worse, because she screams and rolls on the floor (once for almost three HOURS in a row) IN HER SLEEP! That's what makes it so hard! We could not wake her up to calm her down. She is not an angel, of course, but such scenes NEVER happen, when she is awake. First time it happened before the brace when she had to be sedated for an MRI of her back and then restrained by the nurses to finish up the rehab part. She screamed and rolled in her sleep for 2 hours...

This afternoon after having read more info on SpineCor on the Internet and from this Forum I actually have made and appointment for a consultation with a SpineCor specialist in Chicago for Jan 16. We said tentatively that it also might be a fitting session, but upon reading todays postings on the importance of proper fitting - which, I take it, can only be done in Canada? - I began to have doubts. Mayby we should go to Canada?

In general I feel lost. The majority of doctors here seem to see only two solutions to scoliosis : bracing and, if it does not help, surgery. Surgery saven my life and if push comes to shove, I know that this will be our discision. And yet, as any parent, I would like to aviod it. But hard bracing without complimentary and specialized system of exercises seems to be questionable. especially for someone, like Masha, who is facing another 6-7 years of bracing before puberty... What about muscule development? The weak muscules can sometimes annul almost all the correction achieved by wearing a hard brace! I know it from my own experience. That's why I just jumped on the info on SpineCor, which appears to be a system embracing both bracing AND physical therapy.

The question: is Canada preferable to other places because SpineCor originates there? Because they are the only ones "certified" or something?

Or Should I have asked this question in spincor thread?

[Katya]

I have adult scoliosis & wore the milwaukee brace as a teen. I was wondering why your doctor has your daughter wearing the brace to sleep in?? I can see all day but just was wondering???? Ly
http://lynnebackattack.blogspot.com

Our doctor said that Masha is very young to be in the brace the whole day, because it might prevent her body from proper deveoplment.

[LindaRacine]

Hi Katya...

I've heard Dr. Robert Winter, who is widely considered to be one of the foremost experts on scoliosis braces, say that you just cannot successfully brace some kids because they will simply not comply. I believe that he feels that making compliance an issue between a parent and a child is not a worthwhile exercise. That's precisely why I think that the Spinecor brace can be a real blessing for a child such as your daughter.

Since no one has yet been able to reproduce the results seen by Drs. Coillard, et al in Montreal, I'd personally go to Montreal if I were in your shoes. (Note: I believe they're seeing similar results with the Triac brace in The Netherlands.) You have a very short amount of time in which you can make a difference, so I think you have to give it your best shot.

Regards,
Linda

[Celia]

... I tried sedation - it makes it worse, because she screams and rolls on the floor (once for almost three HOURS in a row) IN HER SLEEP! That's what makes it so hard! We could not wake her up to calm her down. She is not an angel, of course, but such scenes NEVER happen, when she is awake. First time it happened before the brace when she had to be sedated for an MRI of her back and then restrained by the nurses to finish up the rehab part. She screamed and rolled in her sleep for 2 hours...

Hi Katya,

I wouldn't be sedating your daughter at home - it's very dangerous! I've read of children being given oral sedation on their way to dental appointments and dying in the car en route. This is something you *definitely* want to avoid. What you describe could have been a reaction to the sedation.

[gerbo]

re "level"; what I meaned is where is the "Apex" or the place where the curve is at its maximum. This is expressed as for example Th11, meaning that the apex is at the level of the 11th thoracal vertebra.

although nightsedation prescribed by a competent doctor is perfectly safe, and can be helpful to break established patterns, your own experience to date is evidence enough it is not going to work for your daughter. Most benefit we had when our daughter was still wearing a hard brace was using a very soft double folded "duvet" or "quilt" (not sure what you call them in the USA/Canada) to sleep on.

However, there is no doubt in my mind that you should try a spinecor, as with the hardbrace you seem to be well on your way to surgery.

I agree with Linda (and others) re going to montreal, just to be sure you get the best posible advice and treatment and indeed it is so comfortable to wear (mostly) and has made such a difference to the quality of life of our daughter.

Linda, re Triac; although theoretically an attractive brace, it isn't really taking of at all. Hospitals in the netherlands which started trying it have reverted back to hardbracing as the were not happy with the results and on dutch forums there doesn't seem to be much enthousiasm from patients
(hope you had a very happy birthday!)

gerbo

[Celia]

....although nightsedation prescribed by a competent doctor is perfectly safe, and can be helpful to break established patterns, your own experience to date is evidence enough it is not going to work for your daughter.

There is evidence that mind altering sedation in young children can lead to brain damage and even death - I know I'm sounding like an alarmist here When my daughter was having problems with anesthesia/casting leading to laryngospasms, I did a LOT of reading on this. Any kind of sedation in young children should be done with an anesthesiologist on hand and not by dentists, G.P's or parents.

[gerbo]

There is evidence that mind altering sedation in young children can lead to brain damage and even death - I know I'm sounding like an alarmist here

yes, you are a bit, I think you might be thinking about a different kind of sedation, i.e the kind given as part of an anaesthetic, and ofcourse that should only happen in very controlled circumstances.

i am talking more about the kind of sedation which makes a child a bit more sleepy and which is used in the UK, by family physicians, as a kind of last resort in difficult sleep problems in children

see this UK based medical site http://www.gpnotebook.co.uk/simplepa...31024&cook=yes

[coloradogirl]

Hello,
I was in a bracing program for two and a half years and I had a hard time adjusting to wearing the brace, too. I was hysterical but, after a while, I got used to it. I really don't think your daughter wants to wear the brace. She feels confined, like she's in a cage. That was exactly how I felt. I HATED to wear the brace, but I had to. I had no choice. Try and see if there is some other kind of program out there that you and your daughter can participate in, like a yoga program. That's what I have to do. I can tell you now that I am a much happier person doing yoga to help my scoliosis than being in a bracing program. I will NEVER go through that again. I hope you and your daughter find the right program that suits her needs and will help fix her back. I know I did.

[LindaRacine]

Linda, re Triac; although theoretically an attractive brace, it isn't really taking of at all. Hospitals in the netherlands which started trying it have reverted back to hardbracing as the were not happy with the results and on dutch forums there doesn't seem to be much enthousiasm from patients
(hope you had a very happy birthday!)

gerbo

Thanks for the info. I hadn't heard.

--Linda

[Celia]

Gerbo,

According to your link, the drug administered for sleep disturbance is Trimeprazine tartrate. Please refer to case 1 on the second page of the following British article: Adverse Cardiovascular Response to Oral Trimeprazine in Children.

http://www.pubmedcentral.nih.gov/pic...1&blobtype=pdf