Monday, May 30, 2011

Our 2nd visit to Primary's

May 29, 2011

We went to SLC on Friday to see the rehab Dr. and the neurologist. It was very comforting meeting with Dr. Gooch. The Np and she was very hopeful that Bren should be able to get movement with therapy and they are going to follow his case. I am so excited for that. They come up to I.F. every other month so that means we don't even have to travel to SLC for her appointments which is a bonus.
We met with Dr. Barkan and I really am confused as what to do. She wasn't very organized and didn't listen to everything that has happened and would move from one thing to the next before we had a chance to inform her of what all has been going on with B. She looked at his MRI and read the report and said she would like to do another one with epileptic protocol. She is not convinced he had a stroke and thinks it could be siezures causing the problem. She wants to have him admitted for 5 days and do an eeg study and take him off his meds and monitor his brain waves.
I called my neurologist in I.F. to ask his opinion and now I don't know what to think. He has been so good to inform us of everything and can explain things in such a good way that we understand. He doesn't think it is necessary to do those tests because he doesn't think it is just seizures he is having. He was very good to answer every question I asked him and was really patient with me. I called him Friday night and he talked with me for at least 45 min. Then even called back to tell me lets do an eeg to see if his meds are working. So I really respect his opinion and know he is doing all he thinks is necessary. So what do you do??? That is the big question. I am open to your opinions so please let me know.
Back to Dr. Barkan, she was really good to tell us that there is nothing wrong with getting more than 1 opinion and to keep getting them until we are satisfied or get the answers. If any Dr. gets upset with this then find a new one because it is your child and you just want to find out whats wrong. She said she's not going to take over but do her part in trying to figure out what is going on and if she can't then she will refer us else where i.e. the mayo clinic or Cleveland, Seattle or any where else she thinks could help us. So that is nice to hear from her. But do I really want to put Bren and our family through all that with the risk of not having an answer? I do and I don't.
It would be nice to have someone tell you what your suppose to do and make these tough decisions. So any volunteers lol. So there you have it my crazy weekend. I am glad he is as healthy as he is things could always be worse.


  1. BTW he ended up having a very mild seizure today and so I think that was an answer to our prayers as what we should do. We are going to call and make the appointment to go to SLC for the 5 day eeg study.

  2. Bren had the bright light 2 x today