I'm an elementary teacher turned to a stay at home mom. I love my family more than anything.
About my family:
We have 3 kids and one on the way.
Here's our story:
We always knew something wasn't right with our little Scott because he would fall ALL the time and constantly hit his head. I voiced my concerns many many times to the pediatricians, but they said not to worry. Since we've lived in a 2 story home Scott has acquired large calves (which we didn't think anything about them.) We went to his 3 year we'll check in July, they said he was perfect. In October I decided to add Special Education to my teaching certificate. I came across a few sentences about muscular dystrophy... The young kids tend to fall frequently and they tend to have large calves. I immediately started crying because it described Scott. I drove myself crazy into research for weeks and I finally decided to take him to the Dr. for a developmental delay. I told her I thought it was Duchenne and she said, "No, I don't think it's that, but there's def. something not right." So we were referred to PT. PT wanted us to come once a week for 3 months. We wanted a diagnosis of something before we started all of that. So again, I dug into research and read every diagnosis story I could find. I finally came across 2 different articles that suggested I get a CK test done. So I called and had it done. We received a call from neurology wanting to make an appt. (this was before we knew the results of the CK test). After I made the appt., I called the pediatrician who called back 30 min later saying his results were 14,100. My heart sank immediately, because I had read enough stories to know what that meant. We went to the neurologist 2 1/2 weeks ago, there was confusion on his genetic test, so it will be another 3-4 weeks before we have the official diagnosis.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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