I am looking for someone who is interested in sharing their personal story. This would be used for my research in education. Soon I willl be a Physical Educaton teacher with Adaptive PE licensure and I am working on a short paper to share with other future educators. No real names will be used.
Some suggestions to include would be:
When he was diagnosed
Characteristics and his personality
suggestions for future educators

Please put you own personal touch on it. This will truely help future educators understand muscular dystrophy better and be better teachers.

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Many others have reported a lot of problems they have with this topic. It is all throughout the forum so it is also hard to follow. Joshua was diagnosed when he was only 6 weeks old. In Manitoba, all boys are checked for Duchenne / Becker at birth even though it may not be anywhere in the family.

Joshua's personality was pretty stable until he started on the steroids at age 3. Once the steroids started, he began getting moody; having tantrums; hard to teach self-dicipline; and would sometimes revert back to toddler talk. We were able to get most under control using coffee / espresso beans because his doctor mentioned they were all symptoms of ADD / ADHD. Ritalin and alike are very hard on the heart and lungs. Before Ritalin came along though, everything was based on caffeine. He also started taking ADHD supplements from our local naturopath store.

Joshua is turning 6 soon and is only in kindergarten. We haven't had to deal with too many issues as of yet. Many parents have seen help by letting their kids leave the class early when they have to change classes and to go out for recess so they don't get lost in the commotion. For Josh, in phys-ed, he does what the rest of the class does, but if he starts to get tired, he is allowed to take a break. He is treated like any other student, but is not pushed past his means. The best thing a parent can do is have a one-on-one meeting with the teacher to explain his weaknesses and have very open communication on a regular basis.

If there is anything I missed and you have any questions at all, please let me know.

Naomi
Thank you for your reply. I had no idea about coffee/espresso beans. That is a very interesting concept. Do you still use coffee or espresso beans? Do you just give him the beans or make the coffee?
Courtney,

The U.S. does not test for MD at birth. We adopted our son (only child) and found out at the age
of 5 that he had DMD/BMD. He did fall, complain of leg pain and had sensory issues with his ears. We did question these characteristics but the Doc said growing pains, what child does not fall and of course a young child would think noises are loud....boiling water on the stove was very loud for him. (MD did not run in birth family) My son is in first grade and doing well. No behavior issues and is currently getting A's and B's. He is very caring,loving and funny. Gym is self limit. We keep my son active by swimming and horse back (hippo therapy)..he loves both. My son does take Steroids and gained 8lbs the first year...We are on second year of meds and have only gained one pound. Diet is low sodium and fat. PT and OT daily at home or with therapist.

Darcy
Thanks Darcy! Thats helps a lot. Do you think it is a good idea for the US to test for it at birth like Canada?
We give Joshua chocolate covered espresso beans. He just chews them and loves them. He know why he needs them and sometimes asks for them himself. We usually give them to him as soon as he starts losing his temper, becoming moody or whiny, can't sit still, or becomes hyper out of the blue. He got to this state in front of his doctor who suggested the beans and within 5 minutes, he was back to himself. Even the doctor was surprised. He said he may not suggest Ritalin etc. ever again after seeing that. Joshua's teacher keeps a container of them at school in the classroom. They aren't a medication so they are allowed to stay in the room. I told her that if she's having a bad day, she could have some too! :)

Naomi
I believe they should ..Especially children up for adoption...don't get me wrong, I wouldn't
trade him in for the world and love him dearly..but this is life changing as you can imagine.




Courtney said:
Thanks Darcy! Thats helps a lot. Do you think it is a good idea for the US to test for it at birth like Canada?
What a great natural remedy instead of medication.

I think that I may try some of those coffee beans on a stressful teaching day! :)
Courtney,
I forgot,
The most important reason they should be tested at birth is because of their weak muscles, they need special meds when they go under for surgery and Docs need to be aware of MD. My son
had two surgeries prior to us finding out about his condition. If something would have happened to him while in surgery, we probably would have never known the cause.

Darcy
Courtney.My son was diagnosed when almost 6 years. When he was few months , one of the doctors from the group sugested some evaluation because my son didn't do some movement with legs as he should in that age. I lost referal. Then when we had another apointment , I asked doctor about referal for evaluation ( this time was different doctor) She said that she doesn't see any problem with my son's developing. I didn't push it and that was probably the best decision I ever made in My life , in my Son's life and my Husband's and even our Grandma's. We all get 5 MORE happy years of normal family.( both Grandmas litle shorter then 5) Now we are DMD happy.DMD happy means that you have to live and do things like everybody else on the world, only when you wike up in the morning the first thing on your mind is that your son will more likely daing , when his friends in same time most likely would open college aceptance letters.

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