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Thread: She cries every night!

  1. #1
    Join Date
    Aug 2004
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    South Dakota
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    Unhappy She cries every night!

    Funny, I thought we'd gotten through all the hurdles and I'd probably never need to cry for help again - but here I am. My daughter has been wearing a Boston brace for 5 months. She did a magnificant job of working her way up to 23 hrs/day, and has been sleeping through the night with it just fine. But over the last few weeks that all seems to be crumbling.
    She has some sensory issues anyway, and I've marveled that she's done so well - but actually I believe the pressure of the brace felt good to her. Lately tho she is complaining many times a day that she's itchy or hot. Mind you, we live in South Dakota and right now it's anywhere from 30 degrees to - 20 degrees! And our house is not exactly toasty - tho we try to keep it warm. Even when we go out in public, she often wears flip flops or ends up taking off her shoes and socks (like at church) because she's so hot.
    She's a person who pretty much can't focus on more than one thing at a time, so once she's got her mind on the discomfort I just can't seem to redirect it. She is "constantly" begging me to let her take off the brace. A couple of times in the middle of the night I've just let her take it off because she was so miserable and wasn't sleeping (so I wasn't either). Now I feel like that was a huge mistake because she wants to do that every night. I barely get her settled in bed and she starts telling me either she's itchy, or hot or it's pinching. I feel like I'm being manipulated!
    At the same time, I'm concerned and wondering if there's really something wrong. She's been "moaning" in her sleep every single night for the past couple of weeks. This is something she's done since she was little - but it's always meant she's cold. If I would go in and cover her, the moaning would stop. Now I wonder if it's because she's cold (she usually only has one light blanket on) or hot - or hurting!!! I keep hopping up and down in the night to cover, uncover, or if she's awake - she pleads with me to let her take it off! Neither of us is getting enough sleep - which makes us less able to deal with the issue.
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  2. #2
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    Aug 2004
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    South Dakota
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    I think I pressed the wrong key - and I wasn't finished with my message (blush).
    I have tried giving her little pep talks - telling her to think of the brace as her friend. That she needs to control it, not let it control her. That she needs to take responsibility for showering each day so she doesn't get itchy, blah blah blah (and I'm sure that's how I sound to her). She listens to it all and then just cries - and nothing changes.
    Is it possible that she's outgrown it and it just doesn't fit right anymore - in such a short period of time?
    Any thoughts or ideas would be appreciated. Thanks.
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  3. #3
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
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    Hi

    It's ok, there's no shame in crying out for help, everyone has bad patches once in awhile and needs to reach out to try and find answers, and there's definetly no shame in it. No sleep definetly not good for mum or daughter. You both need sleep to function, and it'd be frustrating to have hit a brick wall with wearing the brace after doing so well.

    I'm kind of a practical kind of person, here's things that come to mind. My mind works a bit fast, so it might not be quite in the right order that I was looking for.

    Maybe she's hit a psychological block with the brace, her minds telling her that she can't wear the brace, that its hot and itchy and gross (which it is there's no denying that, but usually you can overcome it)

    It could be possible that she's outgrown it so quickly. From memory your daughters about 11ish, and you do grow lots then, sometimes almost overnight. Regardless its probably worth making an appointment with the orthotist, to have a check of the brace. To make sure it is going ok, fits ok, if it needs any further adjustment etc.

    The next step after that I'd probably take, is to make an appointment with your G.P (the family Doc, the one you go to for normal stuff) and ask him to give your daughter a complete check-up such as a complete blood works (I can't remember what else they do at the moment). See if there's anything else that's wrong that could be exsaserbated by wearing a brace. Such as thryoid problems, overheating, underheating etc. It'd probably put your mind at ease at least (and your daughters too).

    Is her mattress ok??. Not to hard, too soft??. Enough pillows, positioned in bed ok.

    Have you tried reasoning/bargaining with her. Ie if she wears her brace ok, without asking to take it off. You make a record on a chart, then after so many, she gets a treat of some kind.

    Would it perhaps help if she talked (either emailing/forum posting/in person) to some kids of her own age, who are wearing braces too. Your spinal doc might be able to help you there, there may be support groups in your area. There is also a fantastic website called Spinekids. http://www.spinekids.com/boards. The forum is dedicated to teens (anywhere from about 10 years of age upwards) who have scoli. They "talk" about what its like to wear a brace, school stuff, what its like to have surgery. As well as non school stuff such as entertainment, hobbies, favourite activites. There's girls who are currently wearing braces, those who are waiting and watching, those about to have surgery, those who have had surgery. Also on there is a section for parents too.

    I hope I've helped a little, and given you some suggestions and ideas. My very best wishes, and I hope it all works out.

    Regards

    Alison
    Last edited by Alison; 01-22-2005 at 12:11 AM.

  4. #4
    Join Date
    Aug 2004
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    South Dakota
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    Oh Allison, you are so faithful! Bless you. It's nice to hear from you again. You have some very good thoughts and suggestions. I did promise her last night that I would call the orthotis Mon. a.m. and get her an appointment. It's an hour's drive to him, so we can just do it at the drop of a hat. Also, as I read thru the forum notes I noticed some folks had holes drilled in their braces to help with the heat. I'm going to ask for that. Today we got her hair cut to try and help with that issue as well.

    Last night I explained to her that when she's moaning in the night I cover her if she's not and uncover her if she is - I just never know which the need is. When she was small, it always meant she was cold. NowI think it just means she's uncomfortable. She often says her legs are cold, but the rest of her is hot. So I said, "Well how about if we only put a blanket on your lets, and just a sheet on top?" "But then my arms get cold" she said. Since she wears summer pjs I suggested she wear a long-sleeved t-shirt and then we do the bit of blanket over legs. She tried it - and she slept through the night!! (And of course, so did I)

    Your idea of overall physical exam makes good sense and I think she's due for one anyhow.

    The more I think about it, the more I wonder if she is outgrowing it. It seems to really pinch her buns when I cinch up the bottom strap - and I don't remember it doing that before. It's hard for me to tell if it's resting on her hips as it should or not. Again, the orthotist should know.

    The mattress idea is great, but that's another issue. She is a very fearful girl (this stems from some abuse and neglect issues when she was tiny) and tho she's slept in her own room since she was a baby (and part of that time, shared with her little brother) for some reason at this age she is just terribly afraid - and has been sleeping on a mat on the floor of our bedroom. I keep reminding her how comfortable her matress would be, but she insists she doesn't mind. I've just sort of given up that battle, and assume and some point she'll grow out of it!!

    No, I haven't tried the reward idea - maybe I need to do that. I think she may respond well to it. I have been reading her a book about a girl with scoli, so she can know she's not alone in the battle, but maybe we should try the website for scoli kids. She's learning to type, but can't do it at a very good pace yet, but she could dictate to me. She might enjoy that.

    Thanks again for your sensitivity to these things and for your quick response. You are an angel of mercy!

    Hope things are going well for you.
    Donna
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  5. #5
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
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    299
    The holes in the brace also make good tickle holes....so I've been told :-)

    I wish you could see the smile on my face right now, even though its all the way on the other side of the world with me. It's a smile that spreads from one ear to the other. And it came when I read that your daughter managed to sleep through the night last night, and it (the smile) still won't leave my face. Its a big step and hopefully there'll be many more sleepful nights :-)

    Things for me are going pretty well right now. I've just got into University (which I'm pretty excited about because I repeated Year 12) and have finally managed to get casual employment after lots of trying.

    Best wishes

    Alison

  6. #6
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    Aug 2004
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    South Dakota
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    You really are precious! Thanks for sharing our joy. We've now had 2 good nights! And she settled right in tonight. It does encourage her when I tell her things I've learned from this site. Maybe you were right on with the psychological aspect idea. I told her that a number of people said their brace actually felt the best when they were lying down. This afternoon she said "that's really ture, Mom." So maybe now she has something different to focus on.

    Congratulations on getting started at the U -- and getting a job! That's awesome! Somehow I know you're going to do very well.

    It is amazing, isn't it - that we can share so nicely all the way around the world! I'll let you know how we come out....
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  7. #7
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    Nov 2004
    Location
    South Florida
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    Hi Dizzydonna,
    Wow, you've gone through some trials. My daughter has been wearing her TLSO brace for about 3 months now and doing well. I'm praying she doesn't have a setback like your daughter just did. You seem to have found some good methods to help your daughter overcome.

    My daughter had (has) some sensory issues too , especially with clothes. I used a reward system that helped a lot. I got a pretty clear glass vase and a big bag of glass marbles and stones. Everytime she got dressed without a fuss, or tried a new food, or whatever, we dropped a marble into the jar. She could then trade them in for a reward that was figured in advance. 10 marbles was a video rental, 20 marbles was good for a movie with a friend. The marbles made such a nice "clink" when we put them in the vase. They also looked pretty. It didn't solve all the problems, but it helped.


    Good luck to you both.
    Tikkas Mom

  8. #8
    Join Date
    Jan 2005
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    13
    HI Donna... wow, my daughter just in her brace for over a month has been amazing me with how well she is dealing with it... and I have totally wondered d- if something like what you meantion could happen... How old is your daughter? Mine is 10 - maybe they could email each other for support?

  9. #9
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    Aug 2004
    Location
    South Dakota
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    Hello! I still feel new at this forum business, and pretty ignorant about all this scoli stuff. Tikka's Mom, what is aTLSO brace like? And how old is your daughter? Brandi's in a Boston Brace. Thanks for your idea. I like it. It never hurts to try something new. We saw her Occupational Therapist today and she agreed with me that sensory-wise, it seems the brace has been good for her. She has made some definite improvements in some balance areas, etc. since she started wearing it. Somehow her body needs pressure to more correctly send messages to her brain! So it's kind of like a blessing in disguise. I homeschool her, and I've also seen some exciting improvements in her cognitive abilities. So, besides the fact that it's helping her back, it's worth the hassles we're going through - and I know we will get through them. It sure helps to have other folks out there who care and give input and share their own struggles and successes. (Alison, bless YOU again!)

    And Swilkers, Brandi is 11 - tho she is somewhat delayed. So can we give out e_mail addresses here? I'm not sure about how everything works. I read all the stuff initially, but have forgotten some and haven't really searched out every aspect of the forum. But I think she might enjoy having a "pen pal."

    It really did help her these past few days to just let her know how hard I was trying to help her -- looking up stuff here and telling her any new idea I'd learned I thought might help her out, making her an appointment, reading to her more out of the scoli book... Tho she was moaning a lot again last night. (It's possible that is from something completely unrelated!?)

    We saw the orthotist today. He's a real gem of a guy and was very caring and compassionate. He didn't think she was outgrowing the brace. Offered to trim a bit off the bottom of the brace (said he usually leaves them a bit longer on the younger girls to allow for growth). He agreed to drill holes in it (even tho it's apparently quite a tedious task), and said he'll check her last x-ray again to see if he can figure where she might need some extra padding or anything. He kept it there and will mail it to us - so Brandi gets a 3 or 4 day vacation! Hope it's just a good break and not too difficult to get back into it when it comes back. He also suggested we look for seamless t-shirts (I don't think I've ever seen any) to wear under the brace - thinking they may be less itchy than the body socks we got from him.

    I wish you two well with your daughters' journeys. How nice they've had a positive start.
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  10. #10
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
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    Hi Donna

    "So can we give out e_mail addresses here? I'm not sure about how everything works. I read all the stuff initially, but have forgotten some and haven't really searched out every aspect of the forum. But I think she might enjoy having a "pen pal.""

    Probably not the best idea if you post email addresses in the actual forums; 'cause there's all kinds of people on the internet and you might end up with strange emails or viruses. Well that's what I think at least.

    You could either send them to each other through the private messaging system. To receive/send private messages you might have to change the option in your User cp (you might have blocked the option when you signed op, but its easily unblocked. Go into Edit Options (I think :-) that's the right one to go into.

    Or you can send an email through the forum to each other. You might have to unblock the no email through the forum option if you didn't want emails sent to you when you signed up.

    I think for you two to email each other would be a good thing. From the Mum's point of view as well as your daughters........

    Hope my explanations make sense

    Cheers

    Alison

  11. #11
    Join Date
    Nov 2004
    Location
    South Florida
    Posts
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    Hi Donna,

    A "Boston" brace is a TLSO brace and all are pretty similar. The configuration depends upon the curve/s and where they are.

    My daughter is 12. I'm sure she'd be happy to email your daughter. Have you tried out www.spinekids.com ? It's a kid oriented site for scoliosis and the girls (and occasional boys) have a great time with their posts.

    We tried the "Boston" undershirt - it looks like a tank top but has a flap under one arm for the part of the brace that rises underneath the armpit. It was comfortable, but way too thick and hot for us here in South Florida. We discovered a shirt made by Under Armour. It's a regular "t" shirt but the material is a moisture wicking stretchy kid of stuff. It fits flat under the brace so no wrinkles, the bottom is long enough, and my girl loves them. We got them at Sports Authority. They cost about $20 each but they're worth it. My kid wears a size "youth large". But they come in adult sizes also. I attached a picture file of the shirt , I hope you can see it. They come in several colors.

    All the best,
    Tikka's Mom

  12. #12
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    Aug 2004
    Location
    South Dakota
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    Thanks for the "lesson" Alison. Just gotta keep pokin' around and learn more. Wish I had more time for it! I found the place to do private messages and e-mails on the forum. Good council.

    Also, Tikka's Mom - I'm excited to check out the shirts - but I don't see where your attachment is or how to open it. Duh! Can you coach me? Otherwise, maybe you could send it to my e-mail, via forum. Thanks

    I did briefly check out the spinekids forum the other day when Alison suggested that - just haven't had a chance to sit down with Brandi and look it over. I think it would be good to do.

    She slept wonderfully last night - without her brace. And no moaning at all! Oh my....

    Well, we'll see what happens after the adjustments. Thanks again for tips about shirts. If nothing else, I'll just do a search for them on the net.

    Warmly,
    Donna
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

  13. #13
    Mary Lou Guest
    We are allowed, as far as I know, to post e-mail addresses here. However, I personally don't like to do that, especially if it is a child's address, but what you can do, is one of you should send the other a private message and give your address there. I always feel that is safer and not everyone gets your address.

    Good luck.

    Mary Lou

  14. #14
    Join Date
    Nov 2004
    Location
    South Florida
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    Hi Donna,
    I tried to attach the picture as a file but it didn't come out. I went to the sports authority web site and went to the "kids" area and then typed in under armour in their search bar. You can also google it. Just type in Under armour clothing and you'll come up with lots of sites. If you have a sports store near you, I'll bet they carry the line. I'm sure there are other manufacturer's that have similar stuff but this was the best one for us.

    Regards,
    Tikka's Mom

  15. #15
    Join Date
    Aug 2004
    Location
    South Dakota
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    Thanks for the thoughts about being careful with e-mail addresses. I agree.

    Tikka's Mom - I looked up the shirts on the web and found them. Do you use the real snug fitting ones? And they're not hot? We tried just a regular t-shirt (without side seams) the other day, but it was just too bunchy under the brace.

    Thanks,
    Donna
    Donna
    Mom to 2 biological kids, grown & Married and 2 adopted kids, 6 & 11

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