Does anyone know anything about Muscular Dystrophy?

One of my students was diagnosed with Muscular Dystrophy over the spring vacation. He is 6 years old and I've been trying to get the mom to take him to the doctor to bring up his muscle weakness since November because he was having an increasingly hard time walking up the school stairs, getting up off of the floor, and has been falling a lot.

She finally took him and they did a series of tests as well as some blood work and he does show the chromisomes (sp?) for M-D, as well as the signs, so he was officially diagnosed.

I looked it up online but mostly found very basic information. I guess I am just looking for people's experiences, if they've found any. I feel really bad for the little guy because he's been having such a hard time and it sounds like it's mostly degenerative, and that there isn't much that can be done to reverse the muscle loss/strength loss that he's already experienced.

If anyone has any experience with this, and you don't mind sharing, I would be very interested in hearing it, even if it's in an FM.

THanks.
Melissa

Re: Does anyone know anything about Muscular Dystrophy?

A very close family friend was diagnosed about two years ago and he was the same age. His parents were also encouraged by his teacher to have him checked out for his "clumsiness" and its right around that age that most boys are diagnosed.

He has a Caring Bridge site and his parents have completely immersed themselves into finding a cure and raising funds to support research.

Its hard to give specific info because everyone can have a different degree of MD, but I know Duchenne MD is the most debilitating and fatal. There are additional tests to find out if its DMD.

I know that he gets physical therapy and must do special excercises every day. They have changed his diet to 100% organic and they watch what he eats as the medication he takes (steroids?) have made him gain a lot of weight. With all of this they have seen (in his case) that the muscle loss has slowed a little bit, he still plays T ball and sports, but he struggles.

Here is one of the organizations that they are involved with -
Parent Project MD it will give you some information that you are looking for, but could also be a great resource for the parents of your student.

Another one is Foundation to Eradicate Duchenne and of course Muscular Dystrophy Assoc

and major
to you for being so attentive to your students, without you he might still be losing precious time to help strengthen his muscles!

Message edited 4/12/2007 10:52:26 PM.

Re: Does anyone know anything about Muscular Dystrophy?

You are a great teacher.