Around what age do boys with DMD usually need a wheelchair for occasional use?   My son is six years old and is doing pretty well walking most times, but has trouble with long distances and tires easily.  By the end of the day at Kindergarten he usually wants to be carried out to the van and if we go for walks he always rides in a stroller or wagon.  We were just at a Neuromuscular clinic where the OT and PT suggested that he may need a wheelchair for occasional use (that he was too old/heavy to be carried or too old to be in a stroller).  Then when we went to see the Neurologist, we were told that he shouldn't even need to be carried, that at his age he should be able to keep up with his peers.  The Neurologist even said that perhaps he was lazy, and that if his wife would carry him around all day he wouldn't walk either.

I am wondering if anyone has any advice for us?

 

Jennifer

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I think that whether your son needs help at teh end of the day depends on your son.  Mine doesn't, but I know some that do.  We do have a mobitlity scooter for my son for long distances, but he doesn't use it much, mainly at airports or zoos.  He would use it at the mall, but since he hates shopping he doesn't go there much! 

 

Your neurologist sounds like an ass.
I was going to say that Andrea, but I am so prejuidiced about good doc's (or the lack of them) that it is like a broken record coming from me.

It sounds like you need a new dr.

 

 

Jennifer, I very much agree with Andrea.  My son is almost 6 and just finished Kindergarten.  He needs help for those long distances at school.  There are options other than wheelchair.  We use a Convaid adaptive stroller (not great on non-smooth surfaces), then there are adaptive jogging strollers. These are not cheap, not generally covered by insurances but may still be cheaper than your co-pay on a wheelchair.  Besides if the Neuro is not willing to write a script and if the PT's script is not good enough for the insurance, you'll pay out of pocket anyway.  Frustrating. 

 

Anyway, I say get something for him that will likely help him for a few years and save your back. He's only going to get bigger and heavier for you to carry over time and you are going to need that back in good condition too!

 

Liisa

Hayden is about 5.5 now and we've ordered him one.  Our PT and OT both offered it quite some time ago, and the Neurologist had no objections to it.  When we go for walks, he splits his time between the wagon and walking.  We're taking a bit of a summer vacation this year that may involve lots of walking, so we though its time.

 

With my limited understanding of DMD, while you want to keep them moving and active as much as possible, you don't want to overwork the muscles either.  So walking is good, but walking to the point where muscles are sore isn't.

Thanks for all your replies.  I find it really hard to know if we are striking the correct balance of keeping him active and making sure he is not overworking his muscles.  Our impression from the clinic was that it is unusual for a child Lucas' age to have trouble walking long distances.  However, it seems like other 6 year olds are indeed having trouble walking distances.  

We have always tried to get him to listen to his body and to give himself breaks when needed, so encouraging him to keep walking more when he says that he needs a break is only going to confuse him.  I think that we will wait until school starts again in September before we make any decisions, as he has a wagon that he can use through the summer.

My son will be nine in Sept.   We have a chair for him but we only use it for outings where there is a lot of walking.    A year or so ago he was a little lazy.   We were trying to find the balance (and still are) between helping him and letting him do things himself, and we found he that would look for help even when he didn't really need it just because it was easier and available.   We've tried to encourage him to be as independent as he can be and now even though his physical abilities are less, he tends have a little more spunk and not always look to us for help.   It could be that he's getting older too.   We also try to teach him to ask for help when he really does need it.  :)
There will alwys be insensitive doctors--sounds like you found one that has no business working with our dmd guys. We didn't even know our son had dmd until he was 7, although we thought he did have a problem, but we could not get any doctor to recognize it. We were told about the dmd by a very insensitive man disguising himself as a MD doc. My son was small and easy to carry, but got his first part-time/long distance wc when he was 8, so we had very little time between diagnosis and permanent wc at age 9. Everyone of our guys is different in their needs, and their parents are usually the people who know them best and when to do what. Don't take the doctor's opinion over your own intuition.

I would get a new neurologist.

You know your son best, if it looks like he is too tired then yes get him a wheelchair for occasional use. The dr seems very insensitive, maybe find a new one.

Jennifer,
Have you ever thought of looking into getting him a motorized scooter?  I have a little boy who is now 10 but a few years ago we had gotten him the scooter to help with the longer distances due to him tiring so easily.  At his school, his classroom is on the other side of the school and walking that far made him very tired.  He is able to ride his scooter to his classroom and it's availiable to him whenever he feel the need for it.  We still encourage him to walk the shorter distanceas, if he is not too tired

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