Toddler MD Symptoms *Please Help* - Muscular Dystrophy Message Board

espen19 · 09-10-2008, 07:23 AM

If anyone can help me, I would greatly appreciate it. My son is 6 years old, almost 7. He has never been a really strong kid, but just this summer, he recently started complaining about not being able to do things that require a little strength. When he runs, he bends forward like he is leaning down to pick something up and he complains about not being able to get up sometimes from sitting on the ground. He does say that there is no pain involved. Last year, we had to tone down his writing because he would press so hard that it would break the pencil lead and his teacher just told us last night about his writing being extremely light now. I appreciate anything that you can tell me at this time. My wife and I are thinking the worst of course, so we would appreciate any info

michigani · 09-11-2008, 07:58 AM

espen19, Hi,

I don't want to try to diagnose over the internet nor scare you unnecessarily. It could be many things. I myself have Muscular Dystrophy so let me tell you what I know about that.

Duchenne's Muscular Dystrophy is a muscle disease that affects little kids, almost always boys age 1-6. It is a recessive illness meaning both parents pass on one copy of the bad gene giving the child two bad copies. In most cases there is no family history because everyone carrying the one bad gene is totally unaware. The bad gene is carried in the X chromosome.

The symptoms are severe weakness, not being able to get up off the floor or keep up with other children.

I would suggest contacting your local MDA clinc. These are the clinics funded and run by the Jerry Lewis telethon. They are great there, compassionate and informative. There are many in Michigan.

I don't mean to sound callus, I am just trying to be straight forward and candid. I truly hope that it is not MD and that this proves to be something less serious. Very best of luck to you and your son.

Mark

CJs Mom · 09-11-2008, 11:53 AM

Hey espen19,
Not trying to scare you either, but, I agree with Mark. You should get your son into a MDA clinic for testing, as soon as possible, because usually it takes weeks to get in. You could also have your regular doctor test his CK (muscle enzyme) level by doing a blood test. NO, blood tests are not fun for little children, but they can possibly give you answers. My son is almost 6 and we were diagnosed with a type of limb girdle md 3 years ago, so none of the testing is fun, but it is something that has to be done. Since I have "been in your shoes" in the past, I'm sure you want to know as soon as possible what is going on with your son, and once you know what it is, you can start treating it. Hope this helps in some way, we all know what you're going through right now, and I will keep you in my thoughts and prayers.
Lori

espen19 · 09-18-2008, 05:56 PM

Since this post we have been to the emergency room and then to a specialist at the University of Michigan. The emergency room took blood tests and urinalysis and everything came back normal, but they did not test for anything specific. We then went to the specialist at U of M and he checked my son out pointing out that he showed as if he has some form of MD especially limb girdle. He sent us for blood tests to check CK levels and they came back completely normal. The specialist at this moment is a little stumped because my son shows signs of MD, but the curved in fingers are not a symptom. I appreciate all of the responses. Thank you

michigani · 09-19-2008, 08:24 AM

Hi espen19,

If your son's blood CK level was normal then that is a positive sign (at least as far as muscular dystrophy goes). Almost all MD victims have an elevated CK level. I think 80-120 is normal. CK leaks into the blood when a muscle cell ruptures or dies. Mine is typically 350-500. I have a slow progression MD. Duchenne's victims can have CK levels in the thousands; 5000-20,000. I would try to follow through with the current investigation. Hopefully you can at least rule out muscular dystrophy. Best of luck!