Hi there

I am new here and my son was daignosed with BMD a year ago. He is 3yrs old now. I have been waiting to ask this question somewhere for a year. What therapy/treatment are you doing with your children? We go to the CHOP clinic and I just feel like we are just sitting and waiting for the disease to progress- I feel like I need to be more proactive because the docs are surely not coming up with many suggestions. They basically said at this point his case is mild and there is not much noticeable weakness and there is no cure. My son can walk and sort of run, he is much slower than his peers and he cannot jump. We do ankle stretches and are trying to get additional PT approved (IU provide 30 mins a month- eww) Any suggestions?

Thanks
Evelyn

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Replies to This Discussion

Evelyn,
I think - you may definitely want to ask this outside the PA group as well for a wider variety of responses. We have found, and others may say the same thing, that CHoP is not as aggressive in their treatment process as other clinics (Cinci seeming to be the most aggressive). However, I *think* you may find that at 3 years old - they may all come with the similar approach of "he's too young right now to do too much". Particularly steroids which is the main treatment available today. Definitely nightly stretches is key. Also - he is not too young to have night time braces, and even if they don't provide any stretch - its worth getting him in the habit early. Also, nto a treatment - but to get ready for future treatment of steroids and such - start working on having a healthy low-salt diet - so when you do go on steroids in the future you don't have the trouble of breaking bad eating habits.
Our 2 1/2 year old currently only does stretches and the night braces. But we are also less agressive in our approach than other families - so i'm not sure when to introduce various supplements if that is a road you want to take.
With our then 4 1/2 year old, CHoP (we see Dr. Tennekoon) wanted to wait on starting the steroids, but we talked with them and said we wanted to start them and they were fine with that after we talked and they knew we had done our homework on the subject. So they will work with you (others may have other experiences) if you go to them with things you want to do.
I would also definitely push the IU for more services... we get OT & PT once a week for our 5 yr old, and PT for our 2 yr old once a week through the IU here in Chester County. But this also took effort on my wife's part to educate them about DMD and show them that the goals for our 5 & 2 year old are not as much about getting to peer standards, but instead about stability and maintaining their flexibility in the joints. She actually got them to rewrite a bunch of the goals to remove reaaching standards\milestones from the outline, and they had to be creative in what they wrote - so some goals for the 5 year old for example were to get him to where he could do different stretches on his own etc...
~P
Evelyn,
My son has dmd and we go to Dupont in Delaware. We have a great Dr. her name is Mena Scavina. They have a great team that we see. We live in NJ and it takes us about an 1and 30 minutes to get there. When we found out about our son. They gave my son different tests. Like a ekg and ultra sound for his heart ( every year) and a bone density test as well as the pulmonary specialist appt. We also got a prescription for aqua therapy. We also see an orthapedic dr. and he has my son wearing night splints. Hope this helps you out!
Dina
Evelyn - we started out at CHOP and moved to DuPont...we also love Dr. Scavina. We did therapy at Theraplay in West Chester (they do have other locations) and they are great there as well!

Pat
Dina said:
Evelyn,
My son has dmd and we go to Dupont in Delaware. We have a great Dr. her name is Mena Scavina. They have a great team that we see. We live in NJ and it takes us about an 1and 30 minutes to get there. When we found out about our son. They gave my son different tests. Like a ekg and ultra sound for his heart ( every year) and a bone density test as well as the pulmonary specialist appt. We also got a prescription for aqua therapy. We also see an orthapedic dr. and he has my son wearing night splints. Hope this helps you out!
Dina
Dina - where do you go for aqua therapy?

Pat
Hi my son, Noah is going to be 2 in dec. and has dmd. We are unsure of what to do/where to go. He was diagnosed last sept. and in oct. we went to Dr. Maguire in Danville, PA. And he did the testing for Noah and the carrier testing for me. He didn't really say how often we should see him and when we should be starting anything. Our pediatrician hooked us up right away with Early Intervention who has been doing PT with him since last oct......but it doesn't involve any stretching. I was wondering when do they usually start the night boots and where are other people going. Thanks for your advice.
Amy Sienkiewicz
HI amy
we were in a similar situation until recently. we used to go to children hospital of philadelphia and just got back from seeing dr wong in ohio. A PT can measure the tightness in ankles with this plastic device that measure ankles. the night boots will be needed if the ankle show decrease in ROM or are already too tight. My son is 3 1/2 and has BMD. His one pT was focusing on exercises that were in some ways more harmful then helpful. she seem great but does not know about MD. She is from a place that provieds pediatrics PT. His PT from IU (like EI, but for kids over 3) is wonderful and has a different approach. we do ankle stretches and hamstring stretches. let me know if you want more info.
Evelyn

Amy Sienkiewicz said:
Hi my son, Noah is going to be 2 in dec. and has dmd. We are unsure of what to do/where to go. He was diagnosed last sept. and in oct. we went to Dr. Maguire in Danville, PA. And he did the testing for Noah and the carrier testing for me. He didn't really say how often we should see him and when we should be starting anything. Our pediatrician hooked us up right away with Early Intervention who has been doing PT with him since last oct......but it doesn't involve any stretching. I was wondering when do they usually start the night boots and where are other people going. Thanks for your advice.
Amy Sienkiewicz

Dear Evelyn,

I live in Pottstown, PA and have two grandsons (ages 5 and 8) with Duchenne. I am reaching out to get more Pennsylvanian constituent activity when PPMD advocates in two weeks. If you know of any other families in PA with BMD or DMD could you please share?

I am sending out the following reminder to maximize constituent activity for PPMD's Advocacy effort coming up in two weeks. We will increase our chances to get government support for our boys by sharing how Duchenne has touched our lives. You won’t even have to leave your home.
Gail
If you can't attend PPMD’s 2012 Advocacy conference in Washington, DC, there other ways to to advocate and help get government support for DUCHENNE. To date, we only have 2 or Pennsylvania’s 19 Congressional districts backed up by actual Duchenne constituents.  Those of us that are there will pick up other PA districts that are not ours. We need to have input (personal stories) from 17 more Congressional Districts in Pennsylvania to help our boys as effectively as possible.

YOU WON'T EVEN HAVE TO LEAVE YOUR HOME!

The goal this year is called 50 STATE CHALLENGE . This means we hope for Duchenne advocacy input from constituents from all 50 states and, hopefully, all congressional district. Pennsylvania, so far, needs input from 17 of its 19 districts. Here's how to do this without traveling to Washington – or anywhere. WE STILL HAVE TIME TO DO THIS.

http://www.parentprojectmd.org/getactive    (Scroll down and read Options #2 and #3.)

QUICK WAY:
You can sign-up for the Packet Drop Off (link provided above and below) where you can also fill out a quick survey (include a photo if you wish) regarding your situation.  This information will be included in the packet delivered to your Congress rep.


 MORE-IN DEPTH:
You can also get free help to create a more in-depth one-page flyer about your situation that can be included in the Drop Off Packets and delivered to your representatives by those who do go to Washington. The flyer telling your story can be duplicated for additional copies, easily sent as an email attachment, and can be easily edited for other Duchenne-related awareness and fund-raising purposes.  Visit link below to see a sample flyer.

SHARING OUR PERSONAL STORIES raises awareness, raises concern and makes others want to join in the fight against Duchenne.

http://www.parentprojectmd.org/getactive    (Scroll down and read Options #2 and #3.)

Thanks for reading this.

Gail

 

Personal Stories so Congress will help boys with Duchenne

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