We certainly expected it to take some time to adjust, considering the brace is made of hard, inflexible material. But, so many posts from other users indicated that they got used to it fairly quickly (within days and weeks) so we thought it would go that way for us as well.It didn't.
Dancer Girl is prone to restless sleep anyway. Wearing the brace didn't help. Edges dug into her no matter which way she lay down.
Once she got to the point of needing to wear it at night to get in her 18 hours things didn't go well. She couldn't fall asleep, or, if she did manage to fall asleep she didn't stay that way. After several hours of trying, the brace would come off in the middle of the night but the damage had been done. Dancer Girl was tired. All the time.She had lots of pillows all over her bed, tried different positions, even stuffed small fuzzy socks under her brace... nothing was working.
At her check up we talked to the orthotist who added some extra foam in certain areas (along the back edge for example) and shaved down others a bit. This worked somewhat, but not entirely.
The thing that seemed to finally work in the end was something we found on a forum post - after many, many searches.
THE TRICK: She started wearing it a bit loosely at night. This allowed for some movement to find a more comfortable position. She has gradually been tightening it and is now up to her full level and on most nights she sleeps through.
So, in the end, a bit of extra foam (at the bottom, back edge in particular), and the shaving down of some edges, combined with wearing it loosely at first is what has done the trick. She also still uses pillows to provide some support.
But it has taken three full months.It seems that for most girls, getting used to wearing it at night isn't all that difficult. Hopefully you are one of those cases!
But if not, try wearing it a bit loosely at first, gradually working your way up to making it at full tightness.
Also, be sure to talk to the orthotist. They may be able to adjust the brace just a bit in order to make a difference for you at night.
Be assured that sleep will come.
I had trouble sleeping because the brace made me really hot so my parents got me an air conditioner and fan for my bedroom which really helps. Also, we got a mattress covering from Bed Bath and Beyond. It feels like a plush pillow underneath your whole body! Hope this helps.
ReplyDeleteWe have a/c in the house but a fan is a great idea since the temp for the house may not be cool enough for someone in a brace. I love the mattress cover idea too - thanks for sharing what works for you!
ReplyDeleteThank you for this post. My daughter wore hers to bed for the first time last night. I was sad to see her in the morning with puffy eyes and grumpy for a poor night's sleep. I appreciate the input immensely.
ReplyDeleteI'm so sorry to hear it was a rough night. It will get better with time, although I'm not sure it was ever comfortable for Dancer Girl. They just get used to it I guess. Hopefully she will learn how to get some rest & adjust quickly.
ReplyDeleteI feel better hear for orher moms about dayghters with the brace. Mine had hers last week and believe me break my heart when she start crying after 30 minutes wearing that and i start craying with her. Srill not wearing the full 18 hours
ReplyDeleteI am so sorry to hear about the tears - we had them too. Both of us. It is hard what they are doing, living & sleeping in this brace. It will take time but your daughter will get used to it enough to get some sleep and hopefully get to her 18 hours. It's OK to cry together in the process. Hang in there!
ReplyDeleteCrying battles to wear it enough hours. Got hers 1 1/2 mo ago and turning 13. When she wears it, it's worn tightly but she is upset it loosens a lot in her sleep. We want to get the most out of this. Any ideas?
ReplyDeleteOh, I'm so sorry it has been so rough! This is not an easy thing she is trying to do. How many hours does she need to wear it? Can you compromise and take some nights off and still get close to the full hours? Maybe the velcro isn't working right - it shouldn't loosen on it's own. It might be worth checking with the orthotist for suggestions if you haven't already. Ours shaved done some edges a bit for us and added some foam which helped a bit.
DeleteAlso, Dancer Girl suggested using lots of pillows to prop herself in a position that seems the most likely to be "comfortable" so she doesn't move into one that is less comfy. And, perhaps wearing an extra tank top underneath the brace at night for a little extra padding. Good luck!!
DeleteI have a 10 year old daughter that got her brace October 4th. She has to wear it at night. She isn't a good sleeper to begin with and now it's even worse. I'm lucky to get her settled in by 11 pm. She is great about putting it on but will take it off before she goes to sleep or in the middle of night. I feel so bad for her. If I could wear it for her I would! I couldn't imagine sleeping in it for 4 years. She cries, I cry- nights are so bad. I know it could be worse in that it could be during the day as well but nights at my house are so hard.
ReplyDeleteOh I am so sorry to hear about your daughter's difficulties with her brace at night. That was definitely a rough part of wearing it but it did get better. It took longer than we'd hoped but Dancer Girl was able to sleep in it eventually. There have been some good suggestions here in the comments - extra pillows, a mattress topper for extra padding, etc. It might also be good to double check the fit. We had to have Dancer Girl's shaved down & adjusted a bit because there were rough or uneven edges originally which felt worse at night. Can you see if she can wear it in the mornings & evenings instead of at night? Or alternate - one night on, one night off? Is there any flexibility in the schedule? I do hope & pray it gets better soon... for both of you...
DeleteSo I took your advice and brought her back in and got her brace adjusted. She said it helped so much and that she would wear it all night now. Well unfortunately that wasn't the case. So I tried to figure out the extra pillows. What I decided to do was put the soft fuzzy papason cushion from her papasom chair on her bed. Worked like a charm! She is now keeping the brace on all night long! ....But now we have a new problem :( She has a heat rash under the brace. Any suggestions at what has worked for you if you've experienced this?
DeleteWe never had issues with a heat rash. that is really unfortunate after figuring out how to make it through the night... how is it going now? I wonder if talcum powder or something similar would help to absorb moisture? Or just fewer layers for blankets? Maybe an under layer that is more of a tech fabric... Any success yet?
DeleteWow. Glad we are not alone. My little girl (13) just got her brace. It makes her so upset. We are trying to gradually wear it more each day. Past two days she has worn it an hour each day. How did y’all do this? Did you gradually add an hour each day?
ReplyDeleteWe started longer than an hour each day but certainly didn't do the full 18 hours right away. It took us a few weeks I think to get up to the full number of hours and even after we settled into a routine sometimes we didn't always make it the full time. What is the goal for number of hours?
DeleteMy situation is a little rare. My 15 year old SON just got his brace and is supposed to wear it at night. Quite a challenge to say the least. A "high schooler" who has decided that he would rather "just have surgery later than wear this thing" is requiring a big reality check as well as lots of support and encouragement. Going to try these helpful tips...thanks so much for sharing!!
ReplyDeleteI'm so sorry - it is hard for teens sometimes to see the long term impact of their current decisions. How are things going now?
DeleteIt has always been difficult to wear braces. I used to wear dental braces in colorado springs and I know how difficult it was to wear that, but no gain without pain. I really appreciate your efforts to motivate others and provide useful information about scoliosis braces. Keep it up Good luck
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Thanks - I'm glad you like the blog!
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I'm glad you find it helpful!
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