I don't even no where to start.....
My 4 year old son Tanner recently had a blood draw to check his CPK levels...his came back at 8000.
He has always struggled with low muscle tone and was a very late walker. He is also behind in his speech...though in the past 9 months it has really exploded. He has never been able to run or climb stairs and does the Gowers movement to get up from the floor. He also shows some autistic like behaviors that his Dad and I have noticed.
The Dr. that we were referred to commented on his larger then normal calves for a 4 year old. (Though we had never noticed it...we just figured it was how he was built.) He also of course asked about any family history...we have no history of MD. He also asked about Tanners older sisters. Our oldest had low muscle tone issues as a toddler and still has some mild issues, and our middle child has weak muscles in her fingers and hands that she recieves OT for in school.
His Dr. requested another blood draw, and we go back to see him on the 12th of May. I am fairly certain that Tanner has some form of MD because when I called the Dr. office to verify his appointment I was told that that is the day the Dr. sees all of his MD patients. The Dr. also told us that he wants to do a muscle biopsy and a DNA study.
I have been doing tons of reading on the internet in the last week since his latest appt. and am just as confused as ever. I hate the not knowing!
Is it common to have such a high reading for Beckers...or do you think it points to Duchenne? Or even somthing else? I understand that you guys may not know for sure either, but you at least know so much more about this disease than I do.
I also read that if the child was very upset during the blood draw that it can skew the results.?.? They had a very difficult time drawing blood from him the first time and he was quite upset and was really crying hard. They even had to stop and let him calm down and then finally were able to get the blood drawn.
I am sorry this is so long and disjointed. I haven't been getting much sleep and the little I have gotten was pretty restless. Thanks for any elightment you can share...or any advice!

Kim

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Hi Kim

Best wishes to you and your family. I would ask your doctor how many boys with dmd he is seeing at this time. I would ask him about his therapy model. Presently, I think the most progressive clinics have a team model where at boy will see docs from rehab, cardio, pulmonary, a dietician, possibly an endocrinologist, orthopedist etc. Others monitor the disease and bring in specialists when they deem necessary. I'm not sure how much choice you will have in the Boise area. You could go to a neurologist, but if they aren't tuned into the developing "standards of care" for dmd you may not have the best care for Tanner. It was important to me that I be a part of the medical team. That means that I can bring suggestions to the table for my son's care. I regularly attended PPMD conferences and would bring care ideas back to our clinic. If the doc had had a big ego and said "no way" with little consideration, I would have looked further. Our doc was sort of resistent, but came around when I pushed several issues with documentation. There were other families who paved the way for open communication before we got there. So now it's, let's try that. He trusts my thinking and I like to pass ideas by him. Some families take their boys out of state for care because they don't feel confident in their local clinics. I think you and your husband need to think about what is important to you. If Tanner does have dmd, your family will be part of the medical system. Presently there are no "standards of care" for dmd, so that leaves a lot to the art of medicine. It also requires parents to be on top of their son's disease. However, don't let it be the dominant focus of your life, there is too much joy to be had. (My soap box)
Karen (Erik dmd 16)
Kim Hopkinson said:
Wow! Thanks for all the info everyone! You all are so great and I can tell that there are many many caring people here on this website.
The physician Tanner is currently seeing is a Dr. Robert Fieldman from Boise. We have only seen him once, but from googling him it looks like he is the Medical Director for the MDA Clinic and Pain Program.
Will we be referred to a neuro. once the diagnosis is made? Or, do we need to seek one out now? There seems like so much we need to look into and so much to do. It's kinda overwhelming. But, I guess we will just take it one day at a time.
Thanks again everyone for all the great info!
I guess my husband and I need to talk to Dr. Fieldman and do some research on the muscle biopsy to make a more informed decision. I never realized that there were differing opinions on whether or not it was needed.
Also, what sorts of question should I be ask Dr. Friedman regarding his experience or course of actions he likes to take. Is there anything I need to be aware of?? I am assuming he must have some experience because of his position with the MDA clinic.?.?
Kim
I agree that you need to be part of his medical team and you definitely need a doctor that is willing to listen to you and your ideas. My son is now 10 he was diagnosed at the age of 3. Also don't let the fact that this doctor is head of the MDA clinic fool you into thinkning he is ontop of the game for The paticular disorder you may be looking at.
Karen said:
Hi Kim

Best wishes to you and your family. I would ask your doctor how many boys with dmd he is seeing at this time. I would ask him about his therapy model. Presently, I think the most progressive clinics have a team model where at boy will see docs from rehab, cardio, pulmonary, a dietician, possibly an endocrinologist, orthopedist etc. Others monitor the disease and bring in specialists when they deem necessary. I'm not sure how much choice you will have in the Boise area. You could go to a neurologist, but if they aren't tuned into the developing "standards of care" for dmd you may not have the best care for Tanner. It was important to me that I be a part of the medical team. That means that I can bring suggestions to the table for my son's care. I regularly attended PPMD conferences and would bring care ideas back to our clinic. If the doc had had a big ego and said "no way" with little consideration, I would have looked further. Our doc was sort of resistent, but came around when I pushed several issues with documentation. There were other families who paved the way for open communication before we got there. So now it's, let's try that. He trusts my thinking and I like to pass ideas by him. Some families take their boys out of state for care because they don't feel confident in their local clinics. I think you and your husband need to think about what is important to you. If Tanner does have dmd, your family will be part of the medical system. Presently there are no "standards of care" for dmd, so that leaves a lot to the art of medicine. It also requires parents to be on top of their son's disease. However, don't let it be the dominant focus of your life, there is too much joy to be had. (My soap box)
Karen (Erik dmd 16)
Kim Hopkinson said:
Wow! Thanks for all the info everyone! You all are so great and I can tell that there are many many caring people here on this website.
The physician Tanner is currently seeing is a Dr. Robert Fieldman from Boise. We have only seen him once, but from googling him it looks like he is the Medical Director for the MDA Clinic and Pain Program.
Will we be referred to a neuro. once the diagnosis is made? Or, do we need to seek one out now? There seems like so much we need to look into and so much to do. It's kinda overwhelming. But, I guess we will just take it one day at a time.
Thanks again everyone for all the great info!
I guess my husband and I need to talk to Dr. Fieldman and do some research on the muscle biopsy to make a more informed decision. I never realized that there were differing opinions on whether or not it was needed.
Also, what sorts of question should I be ask Dr. Friedman regarding his experience or course of actions he likes to take. Is there anything I need to be aware of?? I am assuming he must have some experience because of his position with the MDA clinic.?.?
Kim

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