summer in a brace is hard!

[MJB]

Wow i didn't realize how hard this would be for Halle being in a brace through the summer. We love to go swimming and to waterparks, etc. and it's been pretty difficult with her only being able to have 2 hours out of the brace during the day.

She also goes to summer camp and when they go on the waterpark trips she will only have 2 hours to swim and have nothing to do the rest of the trip. I wish that the spinecor brace was like some of the other braces where it's considered "in brace" time when you are swimming.

[jillw]

MJB, I know what you mean! I was thinking that it was actually good that my daughter was diagnosed in the Fall so that she could get used to bracing and we could work out many of the kinks before we had to deal with these summer issues.

We see doctor Rivard also and Katie is allowed 4 hours out of brace a day...that is 2 periods per day of no more than 2 hours each. She can't do the 4 hours consecutively - there is supposed to be brace wearing time in between. Until the summer, we generally had her out of brace 2 hours or less because we didn't have to buckets of time to be out of brace since school is in session. I am finding we are using 2 out of brace periods per day much more frequently this summer...i.e. she may go swimming in the morning and then we put the brace back on until late afternoon or evening swimming or activities. My understanding was that 2 breaks of 2 hours each per day was the standard - so maybe Halle can do the same? (you could email Dr. Rivard to clarify).

We are going to the ocean in 1 1/2 weeks and that will be a huge challenge for us. Unlike swimming at a neighbors pool, its not like you swim for a couple hours and then go home . Snce we'd be there for HOURS at a time, we're going to have to figure something out. Instead of total freedom to go in and out of the ocean all day long , I'll probably have her put on a dry bathing suit on with brace on top and cover up on top of that after a couple hours and have that be the eat your lunch /play in the sand time for an hour or so and then let her take it off again (I realize that she won't be "in brace" between out of brace sessions as long as she should be, but at least there will be a couple hours in brace).

[MJB]

Thank you for your response, Halle also has the 2 hours in the day and 2 hours in the evening but we generally do our swimming in the day time. We went to the beach one day and a waterpark one day and I also had her dry off completely and put her brace over her bathing suit and i bought her a cover up to put over it while we went for lunch and took a break from swimming. Her in brace time wasn't all that long, only about an hour and a half and then she was out of it again for an hour, although i did not give her a break that night and the next day she only had 1 break.

[Qikdraw]

When I was younger I used to take my brace off a lot, so much so my doctor decided to teach me a lesson and put me in a cast, in summer, and I had camp to go to.

I wore my brace more faithfully after that.

Brad

[leahdragonfly]

Hi everyone,

This is just my two cents worth, and I am sure some will disagree with me, but I speak from the dual experience of being (successfully-but miserably) braced myself as an adolescent for 2 years, and now my young daughter is in a Boston brace part-time as we plan for VBS.

I think there are times when a few extra hours out of the brace, on a day here or there (not habitually), go a very long way in fostering a child's goodwill about wearing the brace. I think in the big picture a few extra hours out here and there, for a special occasion such as a fun beach day, will not harm the child's spine, but will definitely nurture the child's mind and heart, not to mention the happiness of the entire family. The child will remember these things! For our daughter at least, we find her attitude about the brace tremendously improved when she is allowed these little transgressions once in a while for a memorable activity.

That said, I know nothing about SpineCor and its protocols, so I am just sharing my feelings in regards to my child. I agree summer in a brace is hard!

Take care,

Gayle

[Pooka1]

We recently went on a 4-day mini-vacation. My daughter asked if she could try it without her night-time brace. I was surprised she asked because she is so adamant about wearing it when she should. At first I said I thought she should bring it only because she had a break-in period and I was worried she would repeat some of that if she stayed out of brace for a few days. We ended up not bringing it.

Do I think a few days out of brace could possibly affect the outcome? No.

Do I think starting the bracing a few days later than we did could possibly affect the outcome? No. The brace was a week late in coming anyway.

[jillw]

MJB, sounds like you took a similar approach to what we plan to do which I think is very reasonable. Like the others say, it seems like a few extra out of brace hours here and there aren't going to have a detrimental effect. Where it would be more of an issue for certain children (because who knows which curves are particulary likely to progress or not) is in the cases where an afternoon here and there becomes the norm as opposed to an occasional thing.
Unfortunately the summer heat is here nearly every day so it has been harder than in the winter and spring and we can't take her out of the brace for half a day every summer day.....Oh well. Fortunately she seems to be adjusting to the heat a bit more as the summer goes on. Although we are experiencing our challenges, the summer hasn't been as bad as I dreaded. (but we live in upstate NY - if we were somewhere where 90+ and humidity happens nearly every day instead of a couple days a week, it would be alot harder)

[RugbyLaura]

Immy is at ballet school next week & will be out of brace from 9:30 'til 16:30 Monday - Friday

And this will not be the first time! In fact, at her 6 month review her consultant was 'pleasantly surprised' by how well her brace was working - this was just following period when she had been in 2 back to back shows with many 6 hour rehearsals, evening weekday performances & Saturday matinee & evenings.

Would the results have been better if we'd stuck to the 2 hours twice a day rule? I doubt it. Given the size of her curve at 9 years old (38 degrees) she'll probably end up with fusion anyway so I'm determined that she's going to enjoy her childhood as much as the next child!

Laura

[emarismom]

I am so glad I read this thread! I have been taking Emily out a little extra here and there recently. She was out for 8 hours one evening when she walked in her godmother's wedding. Then she has had two or three days where I took her out of it for long periods due to camp activities.

In early August we are going to the Bahamas for 5 days. I know she will be out for long periods during the days. Even though I have been MUCH more flexible recently, I was worried about 5 days straight

Now I know that I am not alone in making these types of concessions and it does feel better. Not to worry, once school starts, everything will be back to normal and we will have her in the brace about 21 hours a day.


Laura, It really is good to hear that through all of those "transgressions", Immy was able to stay stable in the brace.

[rachelroonie]

Yes! Wearing a brace in the summer is EXTREMELY difficult. I live in
Alabama, and it is over 90 degrees outside every day. I have been slacking off a bit about wearing my brace this summer, and I'm a little worried when it comes time for my next appointment. But most of the time that I had spent out of my brace, I spend at the pool. And, I wear a Boston brace and my Ortho. told me that time spent in the pool was not a load-bearing activity, so it counted as brace time.

[MJB]

Thank you for all of the responses! I am glad that I am not alone in thinking that once in a while it's ok to stretch the out of brace break... I just wish her father was the same way, he is so strict on the 2 hours and no longer.

[RugbyLaura]

Marlowe,

We were pretty strict about the 2 hours rule in the early days too. It may well be that your husband is right & what we're doing is going to have a detrimental effect. Who knows? I would stay stick to the protocol as much as you can & try to trust your medical advisers. A lack of trust leads to more & more worry & often to switching between various approaches before they have had any time to work.

Studies have shown that it is very hard to get meaningful data as brace compliance is such a huge problem. It is understood by many (in the UK) that bracing often fails due to non-compliance. Many consultants now opt not to brace at all here.

Sometimes I think I should be a little firmer about it too.

I'm going to pm you about the out of brace xray issue.

Laura x

[MJB]

Marlowe,

We were pretty strict about the 2 hours rule in the early days too. It may well be that your husband is right & what we're doing is going to have a detrimental effect. Who knows? I would stay stick to the protocol as much as you can & try to trust your medical advisers. A lack of trust leads to more & more worry & often to switching between various approaches before they have had any time to work.

Studies have shown that it is very hard to get meaningful data as brace compliance is such a huge problem. It is understood by many (in the UK) that bracing often fails due to non-compliance. Many consultants now opt not to brace at all here.

Sometimes I think I should be a little firmer about it too.

I'm going to pm you about the out of brace xray issue.

Laura x

Thanks, your right.... maybe after she's been in it for longer he will feel a little more comfortable with longer breaks.

[spine'[chicka]]

I agree with leahdragonfly. Sometimes, you just have to take a couple extra hours out. As long as it's not an everyday occurrance, I think she'll be okay. By the way, what camp does she go to? Just wondering.

[MeAndPib]

I wish that the spinecor brace was like some of the other braces where it's considered "in brace" time when you are swimming.

Mine is like that. I have a Boston, but I'm getting a spinecor soon. You honestly don't know how lucky she truly is to have that brace from the get-go! Is it working for her? I really hope so!

(Good luck Halle!)
-Lexi-