Need Information, Please Help!!!
I am a college student in Houston, TX. I am writing a research paper on DMD and part of our assignment is to get information from either a patient with the disorder or a family member. I hope to be attending graduate school for Physical Therapy soon, and possibly in the end become a pediatric therapist. This is why i chose this topic for my paper. Personally i dont know of anyone with this type of disorder, so when i saw this website, i was hoping someone here would be willing to help me out! How does DMD affect the children that have it and your family? What would be a typical daily routine a child goes through with DMD?
Replies to This Discussion
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Permalink Reply by Windy Jackerson on
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What would you like to know?
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Permalink Reply by Kassidy on
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I would like to know how old your child is that has DMD and how advanced the symptoms are. If it affects there daily lives, and if so in what way. What would be a typical day for you and/or your child?
Windy Jackerson said:What would you like to know?
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Permalink Reply by Jeni Ward on
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Kassidy,
I don't know how much I can add to your research.
My son is 4 years old, and was diagnosed this past August. I do not feel he is in a very advanced stage, as we are still seeing improvements in his motor skills. He has always been behind in his gross and fine motor skills. He crawled after one year of age and walked at about one and a half. He has always had trouble running, riding a bike, and going up the stairs one leg at a time. His PT through the school district figured out it was probably DMD- so the PT is very important! At this point, it affects us very little. He sometimes feels sad because he can not keep up with other kids at school and home. We do heel chord and hamstring stretches twice a day, he takes some supplements at breakfast and dinner, and he has night splints that he sleeps with to keep his heel chord stretched. He will start on the steroid deflazacort soon. He does not really know that he has DMD, just that the doctors are trying to help his muscles work better. It affects us, his parents, mostly emotionally at this point, knowing what is to come. But we try to take life day by day, and not dwell on the future too much. Since we are new to this, I don't think we go through the regimens lots of familes go through every day. So hopefully you will get some other replies for your studies. Good luck, I think Colin's PT is absolutely vital to him and us dealing with this condition. I would be happy to answer any other questions you have.
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Thank you Jeni, any information is helpful. Learning of how it affects someone is not only when they get older but also how they start out. Good Luck!
Jeni Ward said:Kassidy,
I don't know how much I can add to your research.
My son is 4 years old, and was diagnosed this past August. I do not feel he is in a very advanced stage, as we are still seeing improvements in his motor skills. He has always been behind in his gross and fine motor skills. He crawled after one year of age and walked at about one and a half. He has always had trouble running, riding a bike, and going up the stairs one leg at a time. His PT through the school district figured out it was probably DMD- so the PT is very important! At this point, it affects us very little. He sometimes feels sad because he can not keep up with other kids at school and home. We do heel chord and hamstring stretches twice a day, he takes some supplements at breakfast and dinner, and he has night splints that he sleeps with to keep his heel chord stretched. He will start on the steroid deflazacort soon. He does not really know that he has DMD, just that the doctors are trying to help his muscles work better. It affects us, his parents, mostly emotionally at this point, knowing what is to come. But we try to take life day by day, and not dwell on the future too much. Since we are new to this, I don't think we go through the regimens lots of familes go through every day. So hopefully you will get some other replies for your studies. Good luck, I think Colin's PT is absolutely vital to him and us dealing with this condition. I would be happy to answer any other questions you have.
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Permalink Reply by Erin on
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Hi Kassidy We live in Houston My son is 6 years old and was diagnosed at 3 1/2 by his physical therapist who noticed the red flags. physical terapists play an important role in getting DMD diagnosed. Feel free to call me at 281-213-3199. Erin
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Permalink Reply by Joel Rhodes on
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Our son was always a little low with his weigh, so the dr. started doing test. We found that he had elevate liver enzymes, and he went through a liver biopsy. It was at this point someone notice the gowers move.
We had him tested and found deletions I believe between 22 - 29.
He started pulling himself up to his feet almost at his first birthday (his older brother didn't really start walking to after he was one, and he does not have DMD), so we didn't think about it as weird that he wasn't walking yet. Then he started to walk only if he could hold on to our fingers or had something to hold on to help with balance. It wasn't till he was about 18 months that he was took his first steps.
Since then we have gotten the boots at night to help him stretch his legs, we try to do the stretching at night, and just started him at age 4 on steriods.
If I can impart anything to you, it is this was/is still the one of the hardest things I think I will ever hear about my child. Take time with the parents if you ever have to share with a parent that their child has a issue like this. I am very appreciative of the person who told us, as she and her assistant took time to talk to us, told us the hard things to hear, but told us there is pontiential hope. As a parent hope is all I have at this time. I have to believe science is going to find a cure, but have to be realistic about what will happen without that cure in time for my son.
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Permalink Reply by Laurie Paschal on
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Kassidy,
We also live in the Houston area (Montgomery). My son, Sam, is 7 and was diagnosed just before his 3rd birthday. A typical day starts with lots of medications and supplements. He rides the bus to school and has a few accommodations. First, he has a rolling backpack. The bus driver and I take care of getting it on and off the bus. I usually have to give him a boost up the first step. He sits at the front so there is less to trip over. He's met at school by a teacher or aide to help him off the bus. At school he has a special flat chair with arms that is fitted just for him. He also has a foot stool. As of right now, there aren't a lot of accommodations needed at school. He's not made to run in PE and also does not do any eccentric exercises. Once at home he's pretty much just like his non-DMD twin brother. He's currently taking golf lessons and is about to start his 2nd season of basketball. He doesn't get as much bball play time as the other kids, but that's at our request. At night we do his stretches. He also uses a nada chair for long leg stretches several times a week.
If you'd like to talk further, please feel free to call me at 936.582.1537.
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Permalink Reply by Darcy Tumminello on
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Hello,
My son is adopted. He was diagnosed at age 5. He walked by age 1 and had no problem riding a bike. He did seem
to fall often and wanted held all the time by mom and dad. We just thought he was spoiled...we don't have other children to compare so thought all was normal. Talked to Doctor at 5 yr visit and she did some simple balancing tests and running and decided to send him for a cpk which was very high. He is going to be 8 in Feb. He takes vitamins, supps and steroids. He rides the bus, climbs trees, and rides a bike. He loves swimming and hippo therapy which are both great for his condition.
He does take adaptive gym and rides the elevator at school. Seems to love it when he can take his frineds in the elevator.
Typical day now that its routine is be happy and enjoy every moment no matter what the limits are. very few at this time.
I would say the extra running to Neuro quarterly, pulmonologist, cardiologist, PT's, and school meetings seem to be a real adjustment..I would rather be relaxing on my days off but would not trade him for the world..love him much and adjusting slowly. By the way, the relationship between mom and dad can be a little up and down at times dealing with DMD.
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Permalink Reply by Jerry Dallapè on
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You certainly came to the right place, Kassidy. We love to talk about our boys. :-)
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Permalink Reply by Danelle Dickerson on
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Kassidy,
My son Matthew is almost 7. We have 3 others who are 8, 4, and 2. I'm not sure where to start. Our son seems to be a little further progressed with this disease than others for his age. I help him get dressed in the morning. He takes his pills in yogurt. We need to carry him down the 3 steps it takes to get outside and pick him up to get him in and out of the van. At school, he uses a scooter in the hallways and walks in his class. We just had a Thanksgiving program at school, and my husband had to go up for our son's class to pick him up and put him on the stage. One of us goes on his field trips to push him in the stroller. He rides home in a carpool with a friend. He loves to play outside when the weather is nice. Inside, he loves to play with his siblings, legos, and does tons of "art" projects. Before bed, we put him on the toilet so he can do a bowel movement, and then, we do stretches and put his braces on. Overall, he's very happy. DMD affects the entire family. We work hard to make DMD not the only thing we're about. We rarely discuss it with the kids. I don't want them all to grow up with a dark cloud hanging over them. It takes alot of planning to think through upcoming events and how we're going to make things happen. Sometimes, it means choosing that my other 3 can't do things because Matthew can't (there's a certain park we avoid, for example). It also sometimes means that my husband and I have to divide and conquer - he takes those who are going and I stay home with those we aren't (for example, he may go to a local football game with the 8 year old and 4 year old - Matt likes to stay home from big events with me). There are alot of doctor's appt. - for us that's 2 and a half hours away. I now look at those doctor's appts. as a date with my husband (with a tag-along). It can be isolating, as others have no idea the stress and strain. The social/emotional aspects are complex to say the least. Our sense of family is much stronger and I cherish that. We have a deep faith in God, and we have seen Him take care of us through everything. I'd be happy to discuss further. Call me anytime. 989-633-3347.
Danelle Dickerson
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Permalink Reply by Sam Ibrahim on
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Kassidy,
My nephew is 10 years old, and currently is in Houston. You can contact me, and I will arrange for you to see him if you wish.
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