My son Alex is 8 and has DMD. He has reduced bone density so his doctor has recommended he receive bisphosphenates by IV this fall. I've heard that some families are using vibration therapy to increase bone density. I'd be interested in hearing from anyone who has information about vibration therapy or is already trying it with their son. I meet with his doctor on Thursday to discuss treatment options and decide how to proceed.

Thanks all,
Debra

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Mathieu has a bone density apt. on Tuesday. I also would be interested to know.
What is the reason for doing IV treatment versus the monthly or weekly medication?

Janine
Hi all,
Thanks for your replies. I talked to a lot of people about bone health at the PPMD Conference this summer and then went back to Dr. Ward, our local paediatric bone health specialist and challenged her with a long list of questions about her recommended approach to treating Alex's bone density.

She impressed me with her background and knowledge in the field and her ability to answer all my questions. She indicated that she likes to take a proactive approach to bone health issues and she feels that the IV injection provides a good outcome for overall bone health. When I heard everything she had to say and weighed it with everything else I have learned over the past few months, I decided to proceed.

When I questioned why she wanted to do a bone density, she indicated that this is the gold standard for assessing bone health and if she would like to have this information to demonstrate quantitiatively the change in state of the health of Alex's bones. She also said that we could opt out of this part of the process if we wanted. We are going ahead...I like hard facts and numbers to back up what I do so it felt better to me to proceed this way.

As for the IV vs monthly or weekly, I found a range of opinions on the way to proceed. I am going ahead with the IV every 6 months as this doctor has a lot of experience with it, she recommended it, and I had concerns about the protocol for the weekly meds (must be taken weekly so we might forget since it is not every day, and you have to eat the right amount and at the right times around the dose). Our lives are busy enough that getting it over and done with once every 6 months seemed the best way for us to proceed. If you check around though, you will find proponents for doing it all three ways.

On the vibration therapy issue, Dr. Ward is familiar with it and will likely be doing a study on it next year. She has the equipment, just needs the funding to run the study. She sees it as an adjuct therapy to the bisphosphonates not as a replacement (at this time). Perhaps more study will help clarify when it could best be used. I was just happy she did not start laughing when I mentioned it and that it does appear to have some merit.

I'll let you know how Alex's procedures go. We are doing it all the first week of December.

Cheers,
Debra
I don't have anything to add here, only a couple of questions. Do boys have low bone density even without steroid treatment? What about shorter height? I remember reading something like this somewhere but cannot find it?

Thanks,
Ofelia
Hi,
According to Dr. Biggar and Dr. Ward, boys with DMD are more likely to have lower bone density even without steroid treatment. I don't know about the shorter height when not on steroids. I do know it is 10-12 inches of overall adult height loss when on steroids (again according to Dr. Biggar).

Hope this helps.
Debra
My son had low bone density prior to steriods. One of the best piece of advice I recieved from another parent was to have a bone density test prior to starting steriods this way I have a baseline. I would recommend if you have not done a bone density test to do it and get a baseline going for your child.

I have been told the fossamax treatment only builds bone mass and it it may be brittle bone mass. So, I would be curious as to what your doctor thinks of that Debra. I have heard about vibration helps because our bones need movement to build on the calcium for our bones. The study would be very good to help with things like standards of care for our children. If funding is a problem I wonder if any of the foundations would take this on to help our children?

Julie
Hi Julie,
I heard the same of fossamax. Alex will only be treated with 4 IV treatments of Zolendronate and Dr. Ward tells me that the greatest concern is with long-term use of bisphosphonates over 5 years so this is relatively "safe". That being said, there is really not enough research in this area (as with many other things with respect to DMD). Alex did have a bone density scan done each year for the past 5 years and the first two were baseline measurements prior to starting steroids. It was based on these scans and his spine x-rays that she recommended this treatment.

Alex will have a bone biopsy prior to the first IV treatment and again after 2 years so Dr. Ward will be able to determine if his bone density is improved enough or if there should be some "finishing" needed with weekly Fosamax for a period of time to bring his levels up to the range she would like to see.

There are questions about how vibration therapy might help ambulatory children. I can see the value for non-ambulatory children who are not weight bearing to strengthen their bones. I guess further study will indicate whether this is a good therapy for all including the ambulatory children. Dr. Ward evaluated many of the vibration therapy systems out there prior to choosing a system to use in her study and is going with the Galleleo system which is very expensive for the home system and would need to be set up and monitored by a physiotherapist. We are not ready to put $5,000 out of pocket when studies are hopefully on the horizon. I'm hoping Alex can be included in Dr. Ward's study when the time comes.

I have already spoken to PPMD about funding for a vibration therapy study. Apparently there are some plans afoot for a round table in the spring on endocrinology issues and from that will come the priorities for funding studies in a number of areas around endocrinology and bone health. There are a couple of doctors who have expressed interest in vibration therapy studies so hopefully that will be a priority.

Alex's bone biopsy and 1st IV treatment are the 1st week of December so I'll let everyone know how it goes.

Cheers,
Debra
Kelvin's bone density was lower than normal, but not low enough for treatment (well, except adding tons of Calcium). Also, he has continually been only in the 5-10% for height, although, this last appt. he actually reached 10% because he grew 2 inches the last year, even being on steroids for part of that time. So, prior to steroids, he had low bone density and was very short. Michelle

Ofelia Marin said:
I don't have anything to add here, only a couple of questions. Do boys have low bone density even without steroid treatment? What about shorter height? I remember reading something like this somewhere but cannot find it?

Thanks,
Ofelia
Was he on 5-10% even as a baby? My son, 13 month old, is on the 95%. We have yet to do his bone density scan.

Kelvinsmom - Michelle said:
Kelvin's bone density was lower than normal, but not low enough for treatment (well, except adding tons of Calcium). Also, he has continually been only in the 5-10% for height, although, this last appt. he actually reached 10% because he grew 2 inches the last year, even being on steroids for part of that time. So, prior to steroids, he had low bone density and was very short. Michelle

Ofelia Marin said:
I don't have anything to add here, only a couple of questions. Do boys have low bone density even without steroid treatment? What about shorter height? I remember reading something like this somewhere but cannot find it?

Thanks,
Ofelia
Alex has always been 25th for weight and around 40% for height but he was a twin so both my kids were a bit on the small side (his sister does not have DMD). Alex is now falling off the growth chart for height since he has been on steroids for 3 years.

Debra

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