A New Neurologist

Friday, March 28, 2014

The great thing about living in Ohio is that we have access to the best TS doctors in the country. People from all over the country (and world) travel to Cincinnati just so their child with TS can be seen by one of the doctor's at the clinic. Cincinnati is 3 1/2 hours south of us so we decided when we first moved to Ohio that we would use that as a back-up plan if things with our Cleveland neurologist didn't work out. 

Our Cleveland neurologist has been very nice, but we just haven't felt like we were getting the care we needed. For instance, around the holidays we started to see what we thought were break through seizures (Joel would make a face like he had a nasty taste in his mouth, put his hand to his mouth and rub it, and then whine and want to lay down.) and I called several times but I would always get the same response from a nurse--that the doctor just wanted me to keep a seizure diary and he would see us in X amount of months. I also called several times regarding Joel's lack of appetite but again, I would only get calls back from a nurse and she would tell me to just keep monitoring Joel. {One time she actually asked me if I have tried giving Joel finger foods. I flat out asked her, "do you think I would be calling you if I haven't tried to feed him everything under the friggen sun?"} That wasn't ok to me. I felt like he was going to wait for my child to be skin and bones and/or have a seizure that sends us to the ER before he did something about it. So one night I told Jeremy I was done with Cleveland and I was calling the next morning to schedule an appointment with Cincinnati. That was most definitely the best decision I have ever made. 

We met with a TS neurologist in Cincinnati on Wednesday. He listened to every concern and answered every single question we had. We left the appointment thinking I wish we would've come here to begin with!

So for now on we will be contacting Cinci for all things TS. We will keep our Cleveland neurologist for emergencies only. 

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