Let me start by saying how wonderful it has been to find the ParentProjectMD. My family has been comforted so much by the words and videos.
The Question: Now we are not able to get a hold of the MDA Clinic to find out about or make the appointment. Is there anyone who has had similar experiences or knows how to navigate these trails to care. We feel like we have be handcuffed just feet away from help.
The Story: Our Caleb is 8 years old and we have been concerned about his mobility for a little over 5 years. Every doctor we spoke with and even his PT thought it had to do with delays.
This year he lost significant muscle mass and we took him to the doctor again. We received a call a week later that went like this . . . "I'm sorry to tell you but Caleb tested positive for MD, we'll need to do a DNA test and we'll let you know next week when we'll need you to come back in. Goodbye, and sorry."
We were crushed, but didn't even know why - then we started researching and understood more.
When the doctor did not call back we started to call them. They said they were working on it . .. then that they couldn't do it and referred us to a neurologist who said they couldn't talk to us and to call the MDA to make an appointment. There we were told the soonest they would be able to get us in would be in 8 months. We went back to our doctor and they said they referred us because they couldn't figure out the insurance coding. I got that for them in 20 minutes and we went back to have more blood drawn. We were told the results would be back in 2 weeks.
We called at 2 weeks + 1 day and were told it would take a minimum of 5 weeks. The next week we were called and told the DNA came back and they would get an appointment set up with the neurologist. If we did not hear back from them in a week to call.
So that is what we did (didn't hear back and called the doctor); we were told they were working on it and to call back if we didn't hear anything in a week. This sounded familiar so I called the Neurologist and then the MDA. The person there said they hadn't heard of us yet and that we needed to get registered before they could even make an appointment.
"What do we have to do to get registered?"
"Oh, it's just a 4 page form. I'll send it out today"
That was on Friday, we got it on Saturday and turned in the necessary forms on Tuesday to the MDA and the doctor (Monday was a holiday). At that point we were told they would get the neurologist's schedule for the next 6 months on Wednesday and we would be contacted on Thursday or Friday for the appointment.
No calls yesterday or today. So we called the clinic. There is only a general voice mail, where we have left a number of messages.......