We took Brigham to the Children's Hospital in Boston over Spring Break. I have had a lot of people ask me questions about how it went and what we found out. I can't remember who we told what so I decided to write a post for the blog to let people know what is going on.
We took Brigham to see Dr. Elizabeth Barkoudah. First, let me say that we absolutely loved her. She not only knew a great deal about her field, but she was very personable. She looked at the years of testing we have already had and suggested a few more test. She also told us that she felt his disorder should be classified as Athetoid Cerebral Palsy. She explained that this doesn't really tell us what is going on in the brain, it just classifies the symptoms we are seeing. It will probably take more testing and time to find out what is actually causing the cerebral palsy. Athetoid cerebral palsy is a pretty rare form of cerebral palsy and so a lot of neurologist don't see it very often, if at all, in their practice. Because of her specialty Dr. Barkoudah has patients from all over the country with this disorder that come to see her on a regular basis. Brigham does have some symptoms that are not typical of athetoid cp, but Dr. Barkoudah feels that it is likely these symptoms with respond to treatment as well as the more typical symptoms.
So what does this all mean. Brigham will start on a new medication called Trihexyphenidyl which is a generic for Artane. This is a drug most often used for people with Parkinson's disease. We will have to introduce the drug slowly over time and it may take weeks before we know if this drug is helping. We will also, over time, hopefully be able to ween him off the drug he is now on to help him sleep. We haven't started the medication yet because none of the pharmacies in this area carry this medication, and it took a few days to find a supplier that had some in stock. It is a pretty uncommon medication especially in a concentration used for children. Hopefully this medication will help the movements decrease and allow him to sleep at night without the interruption of uncontrolled movements. Only time will tell.
So what does the future hold? There will be more testing now, and some testing they would like to wait to do when he gets older. We will stay in contact with our neurologist in Boston through email and telephone and see her in her office at least once a year. She feels she can work with our neurologist here in Arizona and only have to see us on a yearly basis which we are very happy about. Answers should keep coming with time.
So what are we going to do? We will continue to watch our happy little boy grow and do all in our power to make him feel loved and accepted. We will pray for more answers, but find joy in his sweet spirit even if those answers never come. We will hope he learns to walk, but help him learn to stand tall even if his legs can never hold him up. We will love him, and when he gets older we will tell him about the very special people, some who knew him and some who didn't, that saw how special he was and wanted to show him how much he was loved. Thank you all!
written by Carol Hawkins (mom)