Thursday, January 20, 2011

Doctor News

I have been trying to reach Cameron's neurologist for weeks without luck. Yesterday I called to leave another voice mail and shockingly he answered the phone! That never happens! 

Cameron's latest blood work that we were having analyzed by geneticist came back negative for whatever metabolic disease Dr. Foster was testing for. AGAIN. It is a weird feeling. You are happy when test after test come back negative which means your child doesn't have THAT particular diesase, but then you are back at square one wondering when will we ever know? Dr. Foster is ordering several more tests. Another MRI, MRS, more bloodwork, a DTI, and a P1FlARE. The last two tests he said are brand new and might really help with Cameron's diagnoses. He also mentioned that we may need to do a muscle biopsy.

Since Cameron was born he has had a sort of pattern to his development and growth. He will plateau for several months and then have a short period of time where he learns new things and appears to be getting better and we seem to go back and forth with it. Dr. Foster said that this can be symptomatic of a Mitochondrial Disease

Cameron has been doing great, but we have also had some problems surface. For instance, in the last two months he has learned to get from laying to sitting, he began crawling and just last week he started pulling up on certain things. Those are HUGE milestones, but there have been other things starting that aren't good. Throughout the day Cameron's mouth droops down on the left side and his physical therapist and I have been noticing how much weaker his right leg is than his left. Dr. Foster said that when there is such substantial brain damage that the childs body and mind  become comprimised and I guess basically he can't control everything as he should and his body can become weak.

For the past few months it has been so easy to be positive and just pretend like this was in our past because Cameron is doing so great, but seeing these physical issues and talking to the doctor brings back the anxiety and fear.

Here is some information if you would like to learn more about the mitochondrial diseases:

We are so thankful that Cameron is thriving and that he is such a sweet, happy boy and we will continue to pray that things stay that way. Please continue to pray for Cameron and for his doctors.

1 comment:

  1. Hi! ALL of the tests came back negative/normal for our baby until we did the muscle biopsy.

    Hoping you get answers soon.