I am still so thankful that Jared is still so ambulatory. We are truly blessed by this fact and so I really cannot complain. I have been so torn about what we were recently told in Cincinnati and need some real advice from you parents that have already been through this. When Jared was first diagnosed, the Dr's at UCLA told us that Jared should walk and run as much as possible and do whatever he wants. Of course, I have noticed more leg pain and more tiredness, but we just try to get him to listen to his body, something of which he still needs to learn to conserve his energy. They felt that keeping him doing while he still can was the best thing. When we went to see Dr. Wong, the PT told us that Jared should never run in PE, except maybe one lap if he had too, and to do as little walking and running to conserve his energy and his muscles, since they will not rebuild and that we should consider a scooter for getting around and keeping up with his friends. So, we have two extreme opinions and it makes it hard, because how do you tell a child he can't run. Again, listen to me, as I feel bad for even bringing this up because we are greatful that he still is ambulatory. But, honestly, I don't know what is best for him now. Should we let him walk and run without a care in the world and then let the bomb drop when he can't anymore? How do we know since maybe he has some dystrophin in there to help since he has BMD? The other hard part of all this is people honestly don't believe us since he looks like a normal kid. They don't see when he is in pain and needs his legs rubbed. They don't see when we need to put him in a wheelchair because his legs have given out-thankfully that is rare. Thank you for listening and any suggestions would be appreciated.

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Hi Kari,

There have been so many posts about Dr W et al, that if I were in your shoes (and that is somewhat true) I would listen to the PT's advice. I remember Jared as sweet and energetic so it would be difficult to put the brakes on that, and I understand your position. Alexander still walks, runs (a DMD run), can jump slightly...and we have a scooter available for long distance use or simply showing off driving skills for his friends. Having the scooter was great while traveling, even inside airports. It can be a hassle sometimes but in the long run (perhaps way longer for Jared) getting used to having the thing around is easing him into it, which seems to work well so far. He does get shy about using it because he gets too many eyes staring but that will go away in time. Last school year we stopped his PE participation. He was sad and glad about it at the same time but is now used to being the coaches helper instead of wearing himself out. Preserving Alexander's muscles will hopefully help him stay ambulatory longer. There are times when we "let" him run around, but those are times when we know we can stop him if he gets carried away. Or they are times we know will be short.

Preventing our sons from doing the things they see other kids doing isn't fair. Putting on the brakes isn't easy. But the experts say it is best in the long run and watching Alexander's physical abilities deteriorate right before my eyes keeps me following their advice.

You are a great mom and will make the right choice at the right time for Jared.
cheryl
Kari,
As difficult as it is I have to agree with Dr. Wong and the PT's in Cinc. They are the experts. I don't know much about UCLA but a lot of people (doctors & therapists alike) are under the mistaken belief that the more our son's do the stronger it will make them and the longer it will keep them ambulatory. Just the opposite is true as their muscles can't rebuild. The more active they are the more they stretch and tear those muscles and the faster they break down. Gentle stretching is the key as I'm sure they explained to you in Cinc as they did to me. It is really hard to put the brakes on Daniel as well. He is so active still but he pays the price when he does too much - muscle cramping. I have to remind him of this when he is over doing it and he slows down immediatly. He loves to use his scooter and welcomed it when we got it for him this year.
Hi Kari,

From what I have read Dr. Wong is very well respected. We don't limit our son's activities and he is walking well at age 9. I understand why activity should be limited, but it is a catch 22 because, as they say: use it or lose it. As far as I know this applies to everyone's muscles. It is never easy because it is impossible to say if what you are doing is actually making a difference in the progression because you don't know what would have happened had you not done it or done something differently. I always think of this when it comes to supplements. Best of luck with your decision.
We had a similar experience at UCLA vs Dr. Wong. My husband is a research scientist and has his own ideas. He told me yesterday that he feels that our son has a certain number of "step credits". It would be like a game token for every step that he will be able to take. Once those tokens are used up, he will not be able to walk again. We did get our son a scooter (he's 8 and still can get around pretty well when he's not tired). He uses the scooter around school, shopping, etc to save those step credits for things that he enjoys. We feel that he now will be able to play with his cousins, mini golf, lazer tag for more years. We do not stop him from doing things that he enjoys and I don't freak out about it as much b/c I know that we are not wasting step credits and the day-to-day boring stuff.
Also, after our experience at UCLA, we do not plan to return there unless drastic changes are made.
It really is a catch-22. Justin stopped walking at 9.7yrs old. We didnt stop him from running and playing. he played t-ball, and he played soccer. We balanced that out with being caarried or riding in a manual chair alot of other times. Justin still remembers those days of playing those sports, so i wouldnt do it any different. We did stop his participation in anything exercise related in pe from 1st grade on. He was stretched during those times and participated if they were doing fun stuff. Did not stopping Justin from running and all cause him to stop walking earlier? I dont know, but its honestly NOT something I really ever think about. he had a blast doing the things he wanted to do with no restricitions and that was worth it to us.

--Samantha
I am a Dr. Wong believer. She see's more boys in the US (and possibly the world) than any other doctor, so she really is the expert! having said that, we let Seph play T-ball, but limit how much he plays..only 1 practice and 1 game a week (unless it is the final tournament of the season) and up until lately have used the stroller for misc. walking (mall, airports, zoo, etc). I have gotten a handicap tag for the van so that we can park closely and on Monday we are picking up his scooter. This is for 2 reasons really..1. it is on MY terms...not when we need it, but when I WANT it to save steps when lots of walking is required and 2. He gets really tired some times and this way, he can keep going when needed. At this time, we won't use it much, but it will be great at other times.
We also got Seph a kid sized 4 wheeler to ride around our home. We live on 8 acres with my parents in our front yard about 1/2 acre away. This will give Seph a fun way to roam without having to walk/run or go up and down hills.
I can't imagine how hard it would be to limit your son when he is not used to that.. Good luck with this decision and whatever action you move forward with!
Lori
Lori,
A couple years ago we also got Daniel a kid size 4 wheel quad. We live on 20 acres. It is by far the one thing that he has used the most to get around and he loves it! Our property is very hilly and this allows him to keep up with his siblings and get around the property without exhausting himself. Our sandbox is down a hill about 30ft from our house. He drives down to it, plays, and then rides back up the hill when he is done playing. No way the scooter would allow him to traverse our property and the hills. It was the best thing we ever bought him!
Karen
what kind of 4 whhel quad works well for Daniel. I think our sons are about the same age (dylan is 7). We would like to get one for DYLAN but dont know much wout them. Any advice is welcome how fast can it go and how does the braking work, thanks.
carrrie
Karen Barnett said:
Lori,
A couple years ago we also got Daniel a kid size 4 wheel quad. We live on 20 acres. It is by far the one thing that he has used the most to get around and he loves it! Our property is very hilly and this allows him to keep up with his siblings and get around the property without exhausting himself. Our sandbox is down a hill about 30ft from our house. He drives down to it, plays, and then rides back up the hill when he is done playing. No way the scooter would allow him to traverse our property and the hills. It was the best thing we ever bought him!
Hi Carrie,
We bought Daniel one of those cheap Chinese brand 4 wheelers. I believe it is called a Kamatzu or something like that. I'll have to check on that and the size. I believe it is a 50cc. It's been in the barn for the last few months during winter here so I haven't seen it in a while. It cost $800. He doesn't get crazy on it and is actually very careful with his speed. We also set the governor so he can't go really fast. Always cautiuos on it it has held up well. The braking is done by hand and also foot. His thumb sometimes gets tired from using the hand controls to make it go. He gets tremendous pleasure from riding it in the summer and it really saves his legs. I'll look at it tomorrow and let you know on the exact name of it. I have pictures of him riding it on my page. The American brands like Sazuki and Yamaha are definately more quality built but considerable more money.
Karen
hello ,my son he is seven he walk he don't complain he is tired ,lot people they don't blieve us he has dmd they say he looks normal when he walk, just you see him he has difficulter when he stand up, before he fall a lot but know not anymore ,he can not run fast ,my son he go every day to swimming he play a lot he has every day after school programme from 2 pm to 5 pm he run play basked ball for three hour just play, after that he go to swim,for one hour ,it not normal he play all day ,it notgood for him ?
Carrie, the 4 wheeler we got Seph is the 'cheap chinese' kind as well. We just got it for him for christmas and after 2 days, he is loving it! I got it from www.budgetatvs.com it was about $450 or $500 I think..free shipping too! It is gas with real wheels, so it does not bog down in the leaves like the battery operated types of ride ons. It sounds just like the one Karen is describing. You can see it at that web site.

Djamel,
My son swims in the summer alot and i can tell a significant difference in strentght when swimming. I am sure that is why your son CAN play basketball for 3 hours!!! Keep up the good work!
Lori
Lori,
That looks very similiar to the one we got Daniel and what a great price!! Daniel has a Kazuma. Carrie, I believe it will go up to 20mph max but Daniel always goes pretty slow on it. He's always been really cautious about his safety. You won't regret getting it. If you live out in the country, have some sizable property and hilly terrain like we do it, it's been a godsend for him and a lot of fun!
Karen

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