Matthew's p/t has mentioned this before but now she is getting more insistent. She is really thinking that night bracing is the way to go for Matthew. She feels that he is a bit stiff in the mornings and that night bracing will allow him to keep correction at night and start looser in the morning.
I do understand where she is coming from. In fact, I had told Dr. Dobbs when we were in St. Louis that I wanted a night time brace. He humored me for awhile and then said no, he didn't feel Matthew would need it.
Now, I feel like making the kid where a night time brace and brace him during the day seems like so much. But, then, with clubfoot, kids wear shoes and bar 23/7 for months and then at night for years. So not unheard of. And really, not horrid. It doesn't hurt to wear the brace at night...
And, on nice days (which have been few and far between this summer) he plays in the backyard in the sand without his brace. So maybe he should be wearing it at night.
So why am I balking at the thought?
I knew parenting was a tough job. I knew going into this I would have a lot of decisions to make, some tough, some easy, some even harder. I just didn't think that the decisions I had to make at this age could affect him so profoundly for the rest of his life. Can a wrong decision now mean lifelong pain when walking, running?
By the way, Matthew tried wearing the brace the other night. He fell asleep easily enough but woke after 1 1/2 hours wanting it off.
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I kind of assumed that he HAD been wearing a brace at night ... Well, I have to say -- if I were in your shoes, I would think I would go that route. I guess my line of thinking is that every little bit helps, you know?
But I need a little clarification -- when you say "night brace," what do you mean? The AFO? Or the FAB -- the shoes with the bar? I would think shoes with the bar at night, and the AFO during the day. From my understanding, an AFO at night is pointless. Rather, you need that bar to maintain the correction -- it's angled at 15 degrees, I believe, so all through the night it's working at that dorsiflexion. Hence, the tightness might go away if it's been getting a workout at night. Make sense?
Grace's situation is fairly similar -- the Mitchells at night, with the orthotic during the day in her shoe. Granted, it's not a clunky AFO, and now that's it's summer she very rarely wears it. Oops. :) Once school starts up, though, and she wears shoes every day that orthotic is going back in! Summer's are tough -- her favorite form of footwear is ... NOTHING!
So what did Matthew wear the other night? Maybe if he gets used to it (again) he won't ask to take it off. But I hear the other big part of what you're saying ... how many times do you have to make your child do something, or add one more thing to their list of things they just don't want to do anymore ... Oh, I hear you!!
Thank you Sue, I should clarify. Yes, it was the AFO. It is all we have at the moment. Dr. Dobbs did not want to give Matthew a night time brace of any description.
Seeing that he will be 7 in Nov, does that change the bar wearing? Dobbs said he would not go that route with Matthew at his age, but does that mean for sure? Who knows.
I know that the AFO will not hold his foot out like the bar, but it would hold the dorsiflexion.
Arrggghhh. Where is the easy button?
Huge hugs to you! What a tough spot to be in. Will having him sleep in his AFO hurt him in the long run? I'm in a much different place with Riley but I always think, well even though she doesn't have to be in it 23 hours a day anymore, it doesn't really hurt her to wear it but it could harm her to not, kwim? If he can get used to sleeping in it and it won't do harm, I say have him sleep in it. Better he goes through the annoyance now than when he is older. I totally feel for you!
Tough call, I'd email Dobbs again and let him know what your PT thinks. I'm guessing the reason he is saying no to the bar is because Matthew's already had the PTTT so he's got the active dorsiflexion and abduction of the foot. Plus, with his age, a 7 year old will just take it off. If Dobbs really wanted him in the bar at night I think he would have told you and I'm positive he would only recommend the Dobbs bar due to it's ability to allow kids more movement.
You can try the AFO @ night, but even my orthotist has me take off Levi's AFO for naps, skin needs to breathe, and the orthotist and the OT in me also think it's ok for Levi to be out of it in the daytime too for some sensory input.
By the way we we are in the AFO on the RCF on the Dobbs bar because the Mitchell shoe wasn't holding right for our type of CF! :) You can relate!
We asked Dobbs if Levi could be out of the bar, YES, I know that goes against protocal but my son's foot is not your normal protocal. We've had to have him out of it for up to 10 days due to a blister and it we did not notice a thing different in his flexability. Dobbs said that even though Levi only needed 1 cast, no tenotomy, that the point for him for the bar at night is more so to maintain flexabiiity so that when he does get the PTTT it will be a good take due to the tendons/ligaments/muscles being as flexible as possible. So, perhaps think of it from that point too...Matthew's already been there done that.
At times, we have slept only in AFO too, it does hold the dorsiflexion, not the abduction of the foot. So I get what you are saying. Your just so far ahead of us that I don't feel like I can be that helpful to you! :( Jamie
I know nothing about the topic, but just wanted to say good luck with your decision. It sounds like you know what to do, but it can't be an easy choice. From the photos I've seen of them, your kids both seem so happy and well-adjusted. You're making great decisions for them!!
Oh... I have asked myself variations of that same question so many times...
You are not alone in the re-visiting, second-guessing, worrying, doubting, stressing part of parenthood... I am right there with you.
I have n advice for you about the brace except to follow your instincts... YOU are Matthew's mom and YOU know in your heart what is right for him.
...and don't look back....
Tony got his new AFO...it's a tiny little thing. I guess that's a good sign. It bearly goes above his ankle.
Also...I changed sites, kinda. i'm at www.sympathypains.com now. new host and added the "s" at the end. Someone wouldn't reliquish the rights to my other domain.
That's so hard. It's awful to have to make decisions like that when you don't have a crystal ball.
I would talk to Dr. Dobbs about it again and then take all the info and opinions and make your Mommy's gut decision.
I do not think that you should let Matthew being uncomfortable at night be the determining factor. I know as a parent it's excruciating to have to say that. He will get used to sleeping in the AFO or a Dobbs brace if that's what is needed. It will be strange and uncomfortable at first, but he'll get used to it, I promise.
He may not need to have that night bracing, but if it's what you decide is best after talking to the PT and Dobbs and your gut, then I think that you can try to explain to him that the pt will work better and hurt less if he can keep from getting so tight and then just stick with it.
I wish I could tell you the right choice, but I have no idea in your case. Just gather the info and make a choice and stick with it if it's hard. ((((hugs))))
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