night splints, necessary?
I've noticed lots of you have your youngins in night splints. Our Dr recommended we start with stretching and PT and see how he's doing with that. His flexability has increase greatly in the last two months and Doc says he doesn't need them. So, are you using them because stretching isn't working or as a preventative measure?
Replies to This Discussion
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Permalink Reply by cheryl cliff on
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Hi Jason,
Night splints or AFO's are used with stretching as an everyday (or night) routine. The splints keep the foot stretched during sleep at 45 degrees (or better if possible) to keep the heel cord stretched. Heel cords eventually become stiff or tight which makes walking more difficult. So I guess the answer to your question is; AFO's prevent heel cords from becoming too tight. You might not need them yet for your son, or you might want to consider obtaining a second opinion just to make sure the advice you are getting is sound. I recommend checking the experience level of the ortho, pt or doc you are seeing just to reinforce things. Shameful as it is too many medical professionals, at every level, don't really know what they are doing with regard to Duchenne.
hope this helps
cheryl
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Permalink Reply by Jason G on
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I have great confidence in our doctor (Dr Tarnopolsky at McMaster). My son's heel cords were very tight. Since starting stretching he now has flexability beyond 90 degrees.
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Permalink Reply by Jennifer Shumsky on
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We were recommended to start night splints when Xavier was 4 by his Physical Therapist, not because she felt that he needed it for the stretching, but because it can start to become a good habit at that age. Our physical therapist herself has a special needs child and his AFO's were introduced at an older age, and he hated them and he would take them off at night and as a result no matter how much she would strech him he developed foot drop. So if it can happen to the PT's kid, it can happen to anyone. She is a firm believer if you make it part of the routine while they are young, it is just part of their life and they don't know any different as they get older. At this point Xavier is almost 8 and honestly, he still doesn't "technically" need the strech from the AFO's as he is still doing really well with his flexability, but he willingly wears the AFO's at night, and I think they have added to his flexability. He questions many things he has to do in his life some days, as all kids his age do, but wearing his AFO's to bed is not one of them.
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Thanks all. We've tried to get Josh to be an active participant in his treatment and so far its going well. I want him to take ownership of his PT and not feel like its being done TO him. Given that, I can't see making him wear them when he doesn't need to yet.
Btw, he really enjoys the stretches that he does himself like incline board, wall push, toe touches. :)
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Permalink Reply by marcie macek on
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my son is 14 and he quit wearing his splint at about 12. Maybe even 11. Autism really has effected all his treatment thus far but now that he is further in the disease. i think it is a blessing. I can't imagine how all you feel with the emotional damage of your ill children. It is a great world if we don't weaken.
Patty Sherman said:I would start using them as soon as possible to get your son used to the idea of wearing them. I think the longer you wait, the more resistance you may get from your son...possibly when he needs to wear them the most. It seems like my son was about 4 when he started wearing them. Now that he's not walking, we're not as faithful about putting them on every night, but he will still ask to put them on occasionally.
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Permalink Reply by Julie Gilmore on
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As a mum of a little boy who was diagnosed late (5 1/2 and already had contractures; stopped walking at 7) I firmly believe in the benefits of getting the boys into AFO's early.
Jennifer and Patty were spot on when they advocated familiarisation with them prior to the need arising - even if they are only worn for a couple of hours each day / week.
Over the years we have noticed that by the time the contractures develop the boys are really starting to slow down, and as such they are having to deal with the emotional effects of DMD and their inability to keep up with their peers. To then throw AFO's into the equation can overwhelm them - especially if they are experiencing sensory issues, or have other neurological "challenges"
Their gait also changes as the contractures begin and their heels lift off the floor, so to introduce AFO's at this point (they are quite hard to walk in) complicates the issue further. For our son he felt so unsteady on his feet (and more so when wearing AFO's) he would not move once they were strapped on, and would ask for them to be taken off if he needed to get up and go to the toilet.
I often watched the other boys "charging" around in their AFO's on camp as if they weren't there, and found myself wishing we could have had the opportunity to introduce them earlier when he still had the strength and flexibility in his ankles to learn to ambulate in them without fear of falling.......
From a parents perspective (and sometimes we forget that we are affected by each new therapy or decision) I would have loved the time to source socks/stockings, gripper soles and adhesives without the pressure of needing them NOW. To have the time to try things out, and if they didn't work not feel stressed (because the AFO's were not being worn that night) would have made the whole process a lot easier for the entire family.
Obviously it is a personal choice, and it seems you are quite happy with your Dr and their decision, and your son has taken to PT like a duck to water. However you asked for the parents feedback and we are providing it, so please don't think that we are all saying you MUST use AFO's - we are just giving you feedback from our experiences. :)
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Thanks Julie. I appreciate yours and everyone else's input. My son was diagnosed even later than yours; almost 7. He has developed some contractures and was toe walking a bit but stretching has made a big difference. He's still running but stairs have become a problem. We started Deflazacort today.
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Permalink Reply by Jim & Melissa Smith on
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Brandon's neurologist recommended night splints very soon after diagnosis at age 8. His orthodist was impressed by the early recommendation because it was strictly preventative. Her prospective was that if you wait until contractures have started, the splints are uncomfortable and sometimes painful, thus making it harder to get the boys to wear. By the way Brandon says he sleeps better in his "boots'.
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I agree with everything you say... My son quit walking at 8. Splints were only put on at night because of the autism. I felt so guilty so many days and nights because he would wake up and not wear them the entire night. When he no longer wore them i wondered how much of a difference it made since the disease progressed but autism made my life a complete different plan of care in many cases. I still go through them as we speak. I think the autism is a blessing at this point.. not knowing he won't drive, etc like most teens .
mm
Julie Gilmore said:As a mum of a little boy who was diagnosed late (5 1/2 and already had contractures; stopped walking at 7) I firmly believe in the benefits of getting the boys into AFO's early.
Jennifer and Patty were spot on when they advocated familiarisation with them prior to the need arising - even if they are only worn for a couple of hours each day / week.
Over the years we have noticed that by the time the contractures develop the boys are really starting to slow down, and as such they are having to deal with the emotional effects of DMD and their inability to keep up with their peers. To then throw AFO's into the equation can overwhelm them - especially if they are experiencing sensory issues, or have other neurological "challenges"
Their gait also changes as the contractures begin and their heels lift off the floor, so to introduce AFO's at this point (they are quite hard to walk in) complicates the issue further. For our son he felt so unsteady on his feet (and more so when wearing AFO's) he would not move once they were strapped on, and would ask for them to be taken off if he needed to get up and go to the toilet.
I often watched the other boys "charging" around in their AFO's on camp as if they weren't there, and found myself wishing we could have had the opportunity to introduce them earlier when he still had the strength and flexibility in his ankles to learn to ambulate in them without fear of falling.......
From a parents perspective (and sometimes we forget that we are affected by each new therapy or decision) I would have loved the time to source socks/stockings, gripper soles and adhesives without the pressure of needing them NOW. To have the time to try things out, and if they didn't work not feel stressed (because the AFO's were not being worn that night) would have made the whole process a lot easier for the entire family.
Obviously it is a personal choice, and it seems you are quite happy with your Dr and their decision, and your son has taken to PT like a duck to water. However you asked for the parents feedback and we are providing it, so please don't think that we are all saying you MUST use AFO's - we are just giving you feedback from our experiences. :)
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Just an update. Our PT recommended the night splints. Josh has fallen arches and his ankle alignment is a little wonky so his heel stretch looks a little better than it actually is. So, we'll be getting Dafo 9 Softys at a cost of $600 but our insurance plan should cover it.
Josh is actually looking forward to it. He keeps asking when does he get his stretch boots.
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i am glad for him. life is so sad.... no child should have to look forward to such a thing. People with healthy children have no idea how lucky they are. My son is special and sweet and i would not give him up for nothing just as all of you.. But it is such a sad life for all of us and especially our children. I am sorry if this is not a chin lifter. What you wrote took me back in time and where i am today.
Good Luck,
Jason Gautier said:Just an update. Our PT recommended the night splints. Josh has fallen arches and his ankle alignment is a little wonky so his heel stretch looks a little better than it actually is. So, we'll be getting Dafo 9 Softys at a cost of $600 but our insurance plan should cover it.
Josh is actually looking forward to it. He keeps asking when does he get his stretch boots.
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