First, the neurologist does not believe that she has cerebral palsy. He said that the type that she most closely resembles (athetoid), is caused by either severe jaundice, or a lack of oxygen to the brain at some point. Neither of which her medical history implies.
He believes that she definately has some type of movement disorder. One doctor described her movements as resembling Parkinson's disease. The doctor discussed with me the structure of the brain, and how movement is controlled by the central (deepest) part of the brain. He said that there is a balance of chemicals that control movement, and that some metobolic conditions can alter the balance of those chemicals, causing a disorder.
He seemed to be really stumped by Brianna's case. I got the impression that he had never seen anyone with Brianna's "symptoms". They are going to do another MRI to see if there are any issues with that part of the brain that controls movement - he said that they can sometimes tell if it's a metabolic problem vs a tumor or stroke based on how the MRI looks.
As for seeing if the chemical balance is correct, apparently only 2-3 labs in the country look at that, and the only way to see what the levels of those chemicals are is to do a spinal tap, and it must be done in a very specific way. So he has to get special instructions from the lab and they are going to do a spinal tap on my baby girl when she has her MRI. There are also a few more blood and urine tests that he is going to do to rule out some other metabolic disorders that involve a movement disfunction.
He is also going to look into special teams in hospitals around the country that specialize in pediatric movement disorders, and we're likely going to be referred to go see one of those teams.
Please keep Brianna in your prayers. Despite everything she is a beautiful and happy little girl. She is working so hard to progress, and it's amazing how well she's doing. Just yesterday she started trying to walk when I was holding her in standing. Hopefully she'll be able to start using a walker to learn soon!
She's now 18.5 pounds! In 2 1/2 months she's gained almost five pounds. It's incredible the change in her - her cheeks have filled out, and she just looks so good. By no means chunky, but healthy. =) And her hair is getting so long! You can see by this picture she needs a trim again.
Garin is about the best big brother I could have ever hoped for. He is so caring and loving towards his sister. He tries to take care of her, and loves to make "Ha" laugh. He brings her toys, and gives her lots of hugs and kisses. He rarely gets frustrated at her, usually only if she's grabbing him and he wants his "space." And even then he is not mean, just gently pushes her hand away. It's amazing to see what a compassionate brother he is.
No comments:
Post a Comment