Stages our Boys Go Thru when Learning of DMD??

My son is 7.5 and I was told possibly an outliner. He runs as fast as the others kids at school, plays coach pitch and does not toe walk at this time. You cannot tell by apperance that he has DMD He was diagnosed two years ago. We are trying to tell him age appropriate about his condition. I have not used the word DMD , MD or Disease..(I hate those words and I'm sure most of you do)
He knows that he has to stretch to keep strong, he knows he takes muscle pills. He uses a convaid stroller for long trips. The PT at Cinci recently told him he needs to listen to his parrents about stretching if he wants to continue to walk. She said it loud and clear. His smile turned upside down! (that was last month) In March we took him to his first MDA event with a bunch of Celebs in Pittsburgh as well as older children in chairs. I don't feel that I'm sheltering him from his condition...but my son has changed and it did start shortly after the event..now that I think of it we did a walk a thon and older DMD children were present in the spring. Can any of you tell me if your sons have gone thru a denial/anger stage. He is not the same boy I had..tell me this is just a stage. When I try to talk to him about it he stares and acts like he doesn't hear me or he tells me to shut up. Sometimes he just goes off and we never had behavior issues before. (I thought it was because the brand of calcort changed) but Dr Wong states no...let me know if this is just his way of dealing with his condition and how long I can expect it to last. Does he know to much or to little at this time? We tell him he can talk to us or ask us questions about anything and he never does.

Thanks
Darcy

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Comment by cheryl cliff on August 26, 2009 at 9:51am
Hi Darcy,

I can't say or not if these words are full of wisdom but with our son, (now 11-still walks & runs but uses scooter more than he used to) we let him have bits of information a little at a time. He is of a sensitive nature, very intelligent and we didn't want to spoil his innocent time remaining with the overload of bad news DMD brings. He does at times get upset about his disease. All we can do is the obvious- hug him until tears stop. I feel he has the right to mourn the loss of his physical capacity. This mourning will probably continue periodically until science gives us something better than steriods. When he has questions we answer with honesty but without too much detail so he knows he can ask anytime but also gets the message we want him to try not to dwell too much on it. We give DMD attention but try to keep it from controlling his happiness level because he deserves to feel happy. At the end of every conversation about DMD I say what the latest reasearchers are doing to his benefit then express gratitude for them as well as others like Pat, ppmd... Also, I never cry about it in front of him so he won't see me upset and therefore he becomes upset. We do not tell him he is going to die, he knows he is human and all exit the planet that way.

This method has worked out fine for us so far.
good luck
cheryl
Comment by irishgirl on August 26, 2009 at 8:10am
Darcy: I don;t know what to say at all - I do not understand the change. I know the child you know is still in there, but at age 7.5, he's a sponge for information and it possibly scared him. My son was diagnosed in in June 2008. He will be ten in November. As with your son, something special is going on with mine. Liam is totally 100% mobile - he runs, he jumps, rides horses and swims daily. Liam does have DMD and if you look at the symptoms, Liam should not be there, but he is none the less. DMD boys at age 9 while still mobile, don't run. We have told Liam that he's got DMD and that it means his muscles are not as strong as they should be. We tell him that everyone's got something and he's got DMD. I never tell him it's fatal, but my hubby and I do know the bus is coming speeding down the road and Liam is in the way and I may not be able to push him out of the way. Liam is missing exons 48, 49 and 50 which has us sitting very pretty for the exon 51 skipping. We really feel in our hearts that it will make it in time to extend Liam's life. BUT, I have not and will not take him to any MD event at this time. Let me interject that Liam freely tells people that he's got muscular dystrophy. It's just a part of him. We are asked to sent him to the MD summer camp and I say no way. Liam doesn't need to see children at a much later stage in the disease stage yet. I am extremely lucky in that Liam is exceptionally good natured and happy and I do worry that if I have him participate in and MD event, he may loose that spark he's got for life right now. If our children are not yet in scooters/wheelchairs, why show then that is is how they may end up? I am certainly not in denial, but I do fear what you are going through. No one knows how they will exit this earth and if our children had to get his horrid disease, it's at a great time as far as research and upcoming treatments.
If you don't mind my asking, how did you come to have your son diagnosed as he is doing so beautifully? WHen Liam was 7.5, we took him to a neurologist who completely dismissed MD. A year later we got the DMD news. Please let me know how your son is doing and how you are dealing with this situation. I'm sorry that I cannot add words of wisdom, but I am certainly thinking about you all. Noreen

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