Muscular Dystrophy

My son has had very elevated liver enzymes and they could not find anything wrong with his liver so they looked into metabolic testing. On of the test came back super elevated. The Dr told me it should be in the 200s at max and my babies are in the 8,000s! She said that it is a big concern and a huge sign of muscular dystrophy. I know there are several types and some way worse then others. She is sending us to see a neurologist and already talked with a cardiologist... I am soo scared for my baby boy!! I have spent the whole day crying and trying to stay strong for him but I feel like my whole world is tumbling down and I cant do anything to stop it! Has anyone else had anything like this happen to them or have a child with muscular dystrophy?? If so how are they doing and how are you dealing with it?

I don't have a baby with it but we raise a lot of money for the MDA fund. There are much worse things. Hug your baby :-) nothing is 100% right now either.

I don't have any info for you, I just wanted to say I am so sorry you are having to go thru this. I can't even imagine how frightened you must be. I will keep your sweet little boy in my prayers.

My cousin has MD. She wasn't diagnosed til later on in life. They said she could die in her teenage years but she is 20 years old now. You can tell her muscles aren't working well when she walks because she worries her legs will give out and they do often and she falls a lot. She can't do a lot that requires her to use her muscles but she's still able to walk and talk like anyone else. I'll pray for you and your son  

Thank you ladies. We went to a neurologist and they told us our son is very advanced and strong for only being 6months but MD doesnt usually show until later so they sent us in for more cpk blood work and genetic testing. They called us Monday and told us his CPKs were back in and they were lower this time by 2,000 so that is a good sign but we still wont know anything until the genetic tests come back in 3 to 5 weeks.   Waiting is very hard but hes such a great baby he makes it easy. I just focus on him right now and every bad thing disappears.