I saw all the talk on here about night splints, so I asked the mda doctor about them and he seemed very indiferent about them. He wrote me a script for them, but i am trying to figure out why he has never suggested them to us. Do they work? Have you noticed a difference? Anyone that has an opinion about not using them?

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Christina,
I guess have to start by saying that I ahve a bias...I believe that most (not all) MDA docs are reactive rather than proactive in treating our boys. HAving said that, yes, I believe that night splints are VERY beneficiAL. My son, age 7.5 has been wearing them since barely 4. He is still not toe walking, has a range of motion in his heel cord of about +10 to +15. Is this all due to night splints? I doubt it, but a long easy stretch all night long certainly can't be bad and in fact makes sense to be very beneficial. Also, the early you start them, the easier for our guys to get used to them.
I firmly believe in being pro active in treatment of DMD not reactive. If we wait until problems arise, they are much harder to reverse, if we can.
So, there are my thoughts! I am sure you will get many opinions! Good Luck!
Lori
Cannot agree more with Lori. My 4 year old has been wearing them for 6 months for proactive measures, not a requirement. We have not yet had our next appointment to see if there is an empirical measurement to show the improvement that I visually see when we do our stretches at night.
do the splints if your son will tolerate them. we tried for years, and austin(now 10) couldn't stand them due to sensory issues. he is quite contracted in his heel chords now, even after several times serial casting to try to get him off his toes.his walking ability is now quite diminished because he is so far on his toes.
Christina,

I whole heartedly agree with Lori's comments. My son has been wearing night splints and AFO's since he was 5. My son is now 15 will be 16 in October, he still wears them. He says his ankles are not as stiff as they are when he does not where them. He feels better with them on. We have also been very proactive with our son's care.
Christine P. said:
Christina,

I whole heartedly agree with Lori's comments. My son has been wearing night splints and AFO's since he was 5. My son is now 15 will be 16 in October, he still wears them. He says his ankles are not as stiff as they are when he does not where them. He feels better with them on. My son is walking. We have also been very proactive with our son's care.
Hi Christina,

We use the splints, almost every night if possible. We don't take them on vacations or make our son use them during sleep overs but otherwise as much as possible. I think there is pleanty of evidence they do some good. They won't prevent the natural course of DMD but do keep heel cords stretched, which helps boys walk longer. Walking longer is key since other health problems occur after they stop walking.

Without trying to raise eyebrows - don't you wonder what else that MDA doc is missing?
Its a buyer-beware world out there with DMD and docs.
cheryl
I just want to be another voice to agree with all the above. Our local dr. (through California Childrens Services) told me that studies have been done to show that the leg braces and stretching has definitely helped our boys walk longer. Alex had trouble wearing both of them through the night, so we alternate legs...he wears one a night. He has been wearing them since he was 5-1/2 and he is almost 10 and walking and running great. I am sure the braces are part of that.

As far as the dr....I also agree, don't let them be the expert on your son's treatment, you will become the expert if you aren't already. I go to the drs. and tell them what we will do...not the other way around. We don't even see the MDA drs. in Northern CA, we go to Dr. Wong. I know she recommends the braces.

Good luck....
I agree with others, be as proactive as you can. You'll never get 100% proof of whether it is supplements, steroids, the massaging, or leg braces that are helping, but, I know that the man that made Kelvin's braces has been doing it around the country for 30 years and said he has seen huge benefits and that he is upset that very few doctors recommend them up front and wait, until there are already problems, in which, it is too late to try them. Kelvin does fine with them, gets upset if he doesn't have them, he knows what we are trying to do. We try nearly every night, but on occasion mom and dad are just too tired. We also don't do them on overnight trips, but do on vacations. Michelle
Cristina,
Our MDA doctor started off telling us on our first appt. to wear them during the day. When I say first appt., I mean the appt. we heard the diagnosis. While we were expecting to hear DMD, we were still pretty ignorant. So, we ordered day AFO's, only to find Parent Project, and find that they should be worn at night and not during the day. We were pretty frustrated, especially since the day AFO's needed special shoes that we had ordered and couldn't return. The next appt with the MDA doctor we brought it up, and he was pretty indifferent to the difference. Well, let me tell you, there is a huge difference in wearing splints while you're sleeping and wearing braces while you're trying to play. Our son has done really well with them. We make Sunday night his night off. Last night I was going to skip them. Our sons made a fort out of blankets and wanted to sleep in it. Matthew said, "Mom, I need to wear my braces." So, I put them on.
My son has had his since he was 3 and will be 6 in a couple of days. My MDA doctor didn't tell us and when I asked he did the same thing but still wrote the script. I think they work wonders. My son was giving me a hard time of wearing his so we stop for a couple weeks and when we went to the Shriner they said his heel cords were tight. So he was going to need surgery. But I talked him into wearing them going because he didn't want the doctor to cut his leg. And after a month his heel cords are fine and don't need the surgery.
I do believe they are beneficial as well. Our son, Kyle, however right now has been in this phase of kicking them off pretty early on during the night. He is on his toes more during the summer which I have heard is pretty common because the boys aren't in shoes as much. I've been trying to tell him he needs to let them on all night long but I really don't think he "means" to kick them off, I think he just stretches so hard in his sleep that he gets out of them a bit and then just kicks them off. I also do think that it might be time to upgrade his and hopefully find something that he can stay in easier at night. His currently are hinged around the ankle, have velcro straps around the calf, on top of the foot and then velcro on either side so that we can adjust the angle.
I believe they are highly important and offer stretching which is key to warding off contractures. You can never stretch your MD patient enough. I once had a woman tell me that she stopped stretching her DMD son for about a year. She said it was the worst thing she'd ever done because you do not get the mobility back once it's gone.
We make sure to keep our son as stretched as possible with weekly horse riding lessons, daily swimming and above all, daily stretching and nightly wearing of the AFOs. I did notice a statement by Lori - who believes most MD docs are more reactive. I agree with that statement, but you must push your doctor. Keep in mind that MD docs are not really treating patients, but attempting to slow progression of the disease in patients. There is no treatment as of yet. After a year of watching out son in a VERY reactive manner, our doctor, Robert Leshner at CNMC in DC finally made the statement, "Liam is a special case in DMD." Within every disease spectrum, there are exceptions and A-typical patients. Our son will be 10 in two months. He runs, gets up off the floor in less than three seconds, climbs stairs without a problem, rides horses, swims, walks everywhere. At this age DMD boys rarely run. I kept reading the DMD symptoms over and over again. Generally, symptoms begin very early with walking late and having trouble ascending stairs. My son showed no signs until nearly 8 years of age. At age 7.5, we took him to a neurologist who completely dismissed MD. He was diagnosed June 2008. After a full year of watching our son, Dr. Leshner said something special was going on here. He is now a much more proactive doctor to our son and pushed daily and even trice daily stretching in addition to wearing the AFOs at night. We also do not take them on vacations and we do give him breaks like a night a week off from wearing them. But he tolerates them very well and has no problems while asleep. I guess it;s a good thing that he's a heavy sleeper.
I fully feel that we must be as diligent as possible in dealing with tis horrid disease. We need to know as much as our doctors do - even more in some cases. With new highly promising treatments on the horizon, it pays to do all we can.

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