Question for those with older children...

What was the rate of progression in your son?  Was the loss of mobility and onset of cardiac and pulmonary issues evenly paced - or - did things happen in spurts, where he was fairly stable for a period and quickly lost function?  

I'm mostly interested in the progress after you've been on steroids for a while.  After the initial stabilization, or improvement in function that some see with starting steroids - how did it progress after that?

Thanks for anything you can share.


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Hi
Erik seldom fell between ages 4-15 maybe 3-4 times a year. Unfortunately as he got bigger and bone density decreased he broke bones on 2 of the falls. The second one ending his abulation. He had good balance and was stable for short distances (bedroom to bathroom, bedroom to kitchen). At age 15 he could still balance on one foot for a couple of minutes. When the docs say 5 more years of stability probably means walking short distances, but probably not around the mall in crowds. Stablity I would guess to mean few falls.
Positive thoughts are with you.
Kelvinsmom - Michelle said:
I know it varies a lot between boys, but when are folks seeing kids fall down or at least starting to fall. Kelvin fell from age 1 to age 3 and then hasn't really since. He didn't start steroids until 5 1/2, so, the age 3 to age 5 could be the Cinderella factor (since he quit falling). Kelvin will turn 8 in Sept. (90 days) and still doesn't fall. Is that what others experience too? His doctors are predicting 5 years or more of stability. What does that mean? 2 sets of doctors have told us this. Kelvin currently shows no weakness, doctors tell us he is very strong on his tests. We are hopeful, of course, like everyone, that skipping hurries! Thanks,
I think as a parent we continually look for changes in our sons. We probably notice that they can't do something before they do. Many times they will compensate and do something a different way than they did before. My son Tyler just turned 14. He started using a wheelchair when he was 10.5. He was still able to walk (a little bit) but we noticed he was always exhausted, getting upset a lot more, falling more and it took every bit of energy to do the smallest thing. once he started using his chair he seemed relieved. He could now do whatever he wanted and not have to worry about falling. I think by transitioning this way we made it seem as if it was his choice. He realized it was time and in the long run was able to do more things than he could before. He was also very involved in designing the chair he got, down to the color and options. I think in the end he was excited to start using the chair.
Jacob turned 11 yesterday. Since my post a few weeks ago, we have seen continued increased weakness. Still no falling but he is not able to climb stairs without pulling himself up with the rail. We keep telling him not to climb stairs but he still does it and won't ask for help. He takes the help if we are there, but won't let us know that he wants to go up stairs if we are not right there. He has to climb stairs to get to the pool. The chair glide will be installed soon. I've emailed his doctor to see if his deflazacort should be increased but haven't heard back. We have never changed his dose as he was always doing well and we didn't want to mess with anything that was working.
Been reading everyone's responses.. this has been helpful for me even though I know each boy progresses at different rates.


My son Christian is 12 ( will be 13 this Dec) and is only taking Prednisone on the weekends ( 60mg). Also, he started the prednisone at age 8 when diagnosed. We started using a wheelchair only for long distances ( Walmart, zoo, etc) around 10. Halfway through his 4th grade year we took it to school and only use it as a " walker" to help keep him stable in the hallways. But this year ( 5th grade) he rode in it some, to gym and lunchroom) but mostly pushed it. He would stack his books on the seat and would push it from class to class. I did get him a walker towards the end of the school year and started using this more. Just this last month he has REALLY slowed down. After camp, he has been using his wheelchair in the house. I still make him get up and push it or the walker to the bathroom. I want him moving if he can, not sitting all day. He gets in the pool everyday for about 30-45 min and we have an excercise ball that we use for some activities. Just last week we ordered a powerchair as I understand it takes around 6 to 7 months to get. Although I remain positive to him and everyone else, I fully see the progression and have been going through grief silently. It pains me to look at pictures of him last year compared to this year.. but.. it is what it is and I should be thankful for his sweet spirt, and the fact that he is still in general good health and with us. I fully expect him to not be walking ANY more by the end of this year..( secretly my goal for him is to at least be able to take 5 steps by his birthday ( Dec 11).
My son was diagnosed in Dec 2006, a week before he turned 4. We started prednisone in March 2007, and he significantly improved strengthwise. He started to ride a tricycle, and could do stairs, no longer fell asleep in the car at 0930 on the way to the store. We moved to Belgium in March 2010, and switched to deflozacort, since we can get it easier here, and no worry with customs. He still is strong, but we very much limit his walking up and down stairs. We carry him up and down stairs when possible, and carry a stroller with us where ever we go. We want him to conserve strength so he can use it for playing on the playground and things like that. He is doing fine so far, very rarely falls. He is 7 1/2 now, and we pray a cure or therapy will be found before he stops walking
Hello! My son, Nathan will be 14 in October. He has a frame shift insertion on exon 55. Nathan has never used steroids. He started using a wheelchair about a year ago. At that time his arms became weaker also. Before that the chair was used for long distances because his legs would get tight or he would fall. He still can walk from his bedroom to bath holding onto a gait belt around his waist. We also encourage him to walk 3-4 times around the kitchen island-doctors said great go ahead. . His gait doesn't look like the typical Duchenne's boy with shoulders back and up on the toes. He tends to be weaker on his right side.His pulmonary function is normal. He recently started on a low dose ace inhibitor because his echo showed a borderline normal decrease in the shortening fraction.

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