Doctors

I am having a hard time with my daugther's neurologist and he is the 3rd one we have seen since March 2007. I hate to keep switching because I am worried that something is going to get lost in the switches or over looked but this latest guy really has me doubting him now. Maybe someone can give me some advice on what to do... here's the history. Kaitlyn had been seeing a neuro in Omaha, NE which is about 45 minutes away before she had her first noticeable seizure. When she had her first and second one they didn't listen to me. It wasn't until the third one where she had about a 2 hour time frame before she would speak and we took her to the ER did they listen to me. So we met with the neuro and had a 30 minute EEG done, he said it appeared that she had a seizure or two and that he thought she should be on Topomax. We declined the Topomax until further testing and more information and when we didn't get the information from that we hoped for, we switched to another neuro in St Louis, MO which is 8 1/2 hrs away. She was great, she is an Epilepsy Specialist and seemed to know what was what. She told me alot of information in the few months of dealing with but it was just to far away to have her as our only neuro, we searched for a neuro closer and found another one in Omaha. We met with him and he was weird but seemed really good and came with recommendation from another neuro that I used to work with. So we have been with him for a few months now and I am not nearly as happy as I was when I met with him the first 2 times. The first time he said that we could wait to medicate because the seizures weren't interferring with her everyday life and he was really nice and caring. He doesn't have any nurses and only receptionists. He is the only doctor in the practice. So we did the 24hr VEEG and it took him almost a month to get me the results of it and the blood work. We met with him and he ended up not having the report with him but said that she needed to be medicated. I called him back the next day after he said he would call me first thing in the morning and didn't and he confirmed that she did have pretty much constant activity and was having alot of seizures that we weren't catching. So we started her on Trileptal. The day we started the Trileptal Kaitlyn started acting weird, wouldn't sleep and started having alot of muscle spasms and a different kind of seizure as well as an increase in her seizures that could be detected as well. I tried to call him everyday for 2 weeks and he didn't call me back until it hit 2 weeks. He finally calls me back and acts like I had been keeping her reaction to myself and said to stop the medicine right away. He told me that it couldn't be the Trileptal. So as I was looking through my journal of Kaitlyn's seizure log and doctors I came across a note that I wrote from talking to the neuro in St Louis about Trileptal. I had asked her about starting it because a good mom friend of mine had good luck with it for her daugther and they seemed to have similar seizure types and sensitivities to meds. Well I was looking and it said that Kaitlyn wouldn't tolerate the Trileptal because it would increase the jerks and also 2 of the 3 types of seizures she has because it only works in controlling one type. Well why on earth did this doctor put her on it?! Because that's exactly what it did to her. I should have listened to the one in St Louis. Christopher got his EEG done at the same hospital as Kaitlyn, it was only a hour long and it's going on 2 weeks and we still don't have the results from it. When I told our ped who we were seeing she said that he was very hard to get ahold of and doesn't recommend him to people because of it, that is smart but weird and elusive. So I am trying to find another neuro but they can't get Kaitlyn in until November 7th and I don't know about Christopher, however the one we are waiting on is located at the same hospital where they have an actual Epilepsy Center and there is an E Specialist (he is for adults only). So if there is a specialist there, wouldn't they maybe work together?? And wouldn't this neuro maybe know better? Not only that, I think he would probably be easier to get ahold of because they are nurses, another doctor in the practice and it's a research/university hospital that is world recognized. They have the Autism Spectrum Disorder clinic where we are trying to get into for Christopher along with the Feeding Disorder Clinic and it's the only hospital where they can do to the VNS or any epilepsy related surgeries... so I have pretty much convinced myself typing this but I have people who are telling me that it's bad to switch doctors so many times and that I should just stay with this guy but now I am really wondering if he is as good as I thought. Any advice or insight? Thanks!!