14month old with congentile scoliosis

[Alison]

Hi Sue

Even though my bracing was the whole other ballgame; being Infantile Idiopathic, I do have two suggestions of things that my Mum did which I thought I would pass on. She was lucky, with my first braces, my straps were at the back which meant I couldn't pull it off :-)

: See whether you are allowed to decorate the brace with stickers (most of the time you should be able to). It makes the brace seem more personal and not just a hunk of plastic, and may be of assistance in your daughter's compliance to the brace.

:We live in Australia and the climate is pretty hot and stinky during summer. I was wearing singlets/undershirts underneath the brace, and Mum found that it helped me stay happier and fresher if she checked the singlet at lunchtime to see if it was all sweaty or not and if it was really sweaty to change it. Wearing an all sweaty singlet feels disgusting and gets uncomfortable pretty quickly. On really hot days Mum was sometimes doing this two to three times a day.

Best Wishes

Alison

[smedina1]

Hi Alison,
Thank you so much for your reply to Hannah and her bracing.
Like I said she didn't get it yet but your suggestions are very helpful. I'm so happy that you are doing great. And your mom is right there is nothing wrong with you at all, if anything it makes you more special if that is at all possible. Hannah will have to have an operation, they just want the brace to slow down the progession until she is at least 2 years old. She is 18 months old now.
Thank you so much for replying, it sure does help knowing that there are more people going through what we are going through and we can learn from it.
Thank you so much again for caring enough to help us.
Thanks for the sticker idea too, I bet she'll love that.

[greggo72]

ariana's birthday is june 5 ,2003. what type of surgery do the doctors plan to do with the growth rods? is it anterior or posterior or both. where is hannah's abnormality? ariana's is between T12-L2 vertebrae. (in the middle of the back). If you don't mind me asking, you said your husband is away. is he in the military? i am a police officer with the NYPD and I work with guys who served in Iraq. if not never mind.

[smedina1]

Hi Greggo, They are really close in age. I'm not sue yet but I believe it will be posterior. But I'm not really sure. I'm going to ask her doctor on her next visit. I have to write the questions down because they are outta there in a heartbeat. The doctors I mean. The nurses are really nice. If I do have any questions they will get an answer for me. Her abnormalities are in the lumbar area. I don't know which ones they are. I need to find that out too. Sometimes I feel I'm not asking the right questions, all of you know which vertabraes they are and I do not. My husband works for Ford Motor Co. and he is setting up some plants in the Philipinnes, Vietnam and China, I believe he was going to go to Twain(not sure of spelling) but I don't think he will be going there.
He's suppose to be overseas for 6 months total. He came back for the holidays and he will come back in late February and then go back one more time. He should be back in April for good.
Thanks for getting back with me.
Take care

[greggo72]

well we went to the children's hospital of philadelphia and met with dr. John Flynn who has vast experience in ariana's type of case and surgery. he measured her curve to be about 27 degrees. he feels that we should keep the brace on her to contain the curve for as long as possible. he doesn't want to put her through another surgery so soon after her first one. the older she is, the better it will be and the better hardware that can be put into her back. the brace she has on now is getting small so we may have to get another one, although he said that a smaller brace is better for her curve. the brace will be cumbersome for our daughter and detrimental to her muscle growth and therapy, but the doctor says we should choose between the lesser of two evils. The summertime is the worst with the brace because ariana sweats profusely and we can't really take her outdoors too much on hot days. my wife is also worried about waiting too long to do the surgery. if she has it while she is in school, she may have to miss school and she beleieves kids can be cruel. if ariana is wearing a brace during school, my wife is worried about the social implications, scarring etc. I am more concerned with the overall long term health of my daughter and those other things are secondary. have u thought about these things and what do you think? we are going to minnesota at the end of january to visit dr. polly and see what he thinks. any updates with your daughter hannah?

[smedina1]

I would worry about those things too. But since Hannah is only 19 months old and will probably have her surgery this year sometime, she won't be in school. But I know how cruel kids can be, but I believe it's the ones who are much older. I think if you tell kids what she has and why I don't believe that they will be that cruel. It's usually one kid who does that. But believe me I do think of things like that too. Hannah gets her brace on the 25th and goes to her doctor the following week. He wants to see how her curve is with the brace on and I pray that it will slow down her progression. She also has an appt with a nuerologist, its suppose to be a routine, she has a fatty film at the bottom of her spinal column and they just want to make sure that the nuerologist is aware of it when she has her surgery.
She is doing great. If you were to see her you won't know anything is wrong. We are so blessed.
I attached a picture of my daughters Jenna 3 and Hannah 19 months. They are the light of my life.
Maybe you can send a picture of Ariana too.

[greggo72]

thats great-i don't know how to open tyour file but here is a pic of our son gregory 3 and a half and ariana 19 months

[Alison]

Hi

I just wanted to share my 0.02 cents experience on braces, school, kids and whether they're cruel or not. I was wearing my brace when I started school: Kindergarten until Year 2 (4 years of age to 7 years of age, and then again in Year 6 until Year 8 (11 until 13 years of age). I found no problems when I was little; younger kids seem to be a lot more accepting of peers who are "different" in some way and accept them for whom they are and most don't even notice or forget its there, or think its pretty cool. My Mum went in when I was in Kindy and explained about my brace and why I wear it, and most kids were just like oh ok. And I wasn't self conscious a bit about it; I'd (someone in my Kindy class remembered me for this many years later) pull up my school dress quite regularly and show people my really "cool body" with stickers all over it. I felt as normal as any other kid and was barely actively aware of my brace most of the time.

It was when I was wearing the brace the second time that I found it a lot harder and the kids were a lot crueler, as you get older (end of primary school, begining of high school (Year 7/Year 8) kids are a lot more aware of people who are "different". Its then that I started to feel self conscious and I found kids would stare and make jokes once I entered high school (which is year 8 in Australia). You do become stronger as a person, and learn very quickly to make witty comebacks :-) Eventually it became "old news" and the kids stopped being cruel, but it took a long, long time and you still feel self conscious.


My very best wishes

Alison

[smedina1]

Hi Alison, Thanks so much for your advice. You sound like a remarkable person and I bet has become a very strong person too. How are you doing now? Do you still have to wear a brace?
I tried sending a picture of my 2 girls and I don't think it took. I'm going to try again. Jenna is 3 and Hannah(who has scoliosis and kyphosis) is 19 months.
Thanks again for replying

[smedina1]

Let's try this one more time.
I guess I don't know how to send a picture.
I'll try and figure it out later.

[Mary Lou]

Greggo and Smedina,

My 13 y.o. daughter has Kyphoscoliosis and had spinal fusion about six weeks ago. She tried two different braces before surgery and didn't do well with either. The sugery, however, she did great! There is a young lady in Jamie's class who has Scoliosis and has worn a brace since she was 2 y.o. and is now 14 y.o. and looking forward to getting out of her brace soon. Her mother and I have talked many times and it seems she has had less trouble with her daughter wearing the brace because it was part of her life since she could remember. Most kids in school don't even know this child wears a brace unless they are in her gym class and notice it while they are changing. If your daughters need surgery or need to wear a brace during school, talk to the school. Go into the classroom and do a "show and tell" to the kindergarten class. Kids at that age are very curious and will ask a lot of questions. Once they know the truth, there shouldn't be much of a problem.

Best of luck.

Mary Lou

[smedina1]

Thank you MaryLou, that was very helpful.
We can use as much information as possible.
I have a question when my daughter is in the brace(TSLO)
How does she sit and get in and out of a chair? This may sound pretty dumb but right now she sits in a bouncy chair, she just loves it. I think it will be hard for her to get in and out of. Any suggestions about a chair that may be better for her. This may seem not very important but she sits in her bouncy while she watches tv or gets tired.
Does she have to lay down more? I just want to make her as comfortable as possible.
Thank you

[Mary Lou]

Any issue you have is an important issue.

I think you will be very surprised in your daughter. Children, especially young children, are very adaptable. My daughter isn't allowed to bend, twist or turn her back and needs to bend at the knees to pick things up from the floor. She has learned to pick things up with her toes just so she doesn't have to bend down!

Your daughter may have trouble getting up from the floor and I would imagine there will be some frustrating moments for her, but stay positive and encourage her and remind her she can do it. Sometimes I think it is harder on the parents sometimes than on the kids.

Jamie didn't seem to need to lay down when she wore he brace. She spent more time watching TV because she didn't want to try to do anything in her brace. Remember, she was a 12 year old, who had a mind of her own and did not want to wear a brace of any kind.

Mary Lou

[Alison]

Hi

Nup no more brace, the brace was cast away a week before my fusion surgery and it never saw the light of day again, and I did not wear a brace post surgery. Well......it sits pride of place on top of my cupboard but the only person who wears it now is my Teddy Bear.

I think my bracing would have been "a lot easier" if I had worn the brace the whole way through-15 months to 13 years of age instead of the 3.5-4 years in between where I was brace free. I had to get used to the brace all over again, finish primary school and start high school, and knew that this was an absolute "last ditch effort" that probably wasn't going to work, and had been after 6 months of not being allowed to get the brace due to hospital adminsitrator politics. The brace free years were absolutely wonderful and were given for a number of reasons; one was to give my muscles a chance to work again, and my curves were sitting relatively stable at that point. And it also gave me years of normalcy.....not that wearing a brace wasn't normal (well I thought it was the most normal thing in the world), and I then knew what it was like to not wear a brace which made it all the more harder.....but I think you'll understand what I mean........ Not that I didn't wear the brace the second time around, I wore it faithfully 23/24 hours a day for the two years and did anything that any ordinary person my age would, but life was just a lot more difficult to do then the curious kindergarten days :-)


Smedina,

You'll probably find the first few days when your daughter gets the brace to be as difficult as anything, even though its only for a shortish amount of time, it is difficult to put someone into one. She may cry; and you'll probably feel like crying too, but the most important thing for you is to not get upset in front of your daughter.

My Mum told me that when I first got the brace, I would use it to try and get out of things (make people pick up my toys for example), but as long as they stood their ground, stayed positive and told me "you can do it", I would always work out a way to do it. (At one stage I was thumping down on my knees to sit down on the ground, but I soon worked out that hurt, and worked out a better way). I second Mary Lou, children are very adaptable, and are especially adaptable at working out (on their own mostly, even though it may take awhile) how to do something that they wish to do.

One thing that you'll have to make sure is checked when your daughter gets the brace, is that it doesn't cut into the top of her leg when she sits down on a chair (perhaps even take in one of her chairs to the fitting to see how it is), and give her a go at sitting on the floor (even sitting cross legged on the examination table) to see how the brace sits in relation to the top of her legs. I can't remember having trouble getting up and down off the floor when I was little (probably worked out a way to get down there not really sure), I think I used the couch to get down :-). Perhaps a pillow under her bottom when she's sitting on the floor might help with being comfy (takes your legs up off the floor a bit and releives pressure slightly) but it would be a case of trial and error to see what works best.

I'm not sure what a bouncy chair is (we probably call it something else in Australia :-) but I'd say give it a go, she seems to love it so I'd say try it out. She might need a hand getting in and out of it at first, but will probably very quickly work out a way to do it on her own. It (the bouncy chair) might need a pillow in it to make it a bit easier/comfortable, but it's once again a case of trial and error :-). I wouldn't think she'd have to lay down (I certainly never did :-) more than the usual nap times during the day; she may be a bit reluctant to do stuff at first (new position, bit more stiff and less bendable etc) but with gentle encouragement will do just fine :-)

I am doing really well now, unless you knew or saw the scar you would not have a clue that I've had a spinal fusion. I'm 18, just about to start university and try and fit too much stuff into the day, I play sport, musical instruments and have a part time job. There is very little that I wouldn't/don't do, even if I'm not supposed to do something, (my surgeon put long term things that he strongly recommends that I don't do), such as abseiling/repel I give it a go at least once (and usually more), because I don't want to be 80 and have regrets at the things I didn't do in my life. There's some things I won't do, such as Bungee Jumping or Sky Diving but that's because I do want my back for the next 80 years :-) to stay in one piece. Every so often I do feel "older and wiser" then people my age, but that doesn't bother me too much, it's just what makes me, me.

Best wishes

Alison

[smedina1]

Thank you Alison it means alot when someone takes the time to give other people insight into what they have gone through.
A bouncy is a chair that a baby lies in. It's just that Hannah likes to lay in it. And thanks about making sure that the bottom of her brace doesn't cut into her legs, all that will help me. I need all the information I can get so I'm prepared.
You have been very helpful and if you can think of anything else that would be great, you have helped me already.
Thank you so much