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lsittll (@lsittll)

Changing Doctors

Epilepsy & Seizures | Last Active: Aug 15, 2022 | Replies (29)

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@terik

Hello,
I am new to this blog; however I have a 26 yr old daughter with complex seizure issues among other dx's. After reading the other messages regarding changing doctors has scared me to death. First, I have to say everything said, I definitely relate to...and I find that extremely concerning. She has been with her current Dr. for several years, but something has changed and my gut is telling me to change Dr.'s. That said, sometimes I feel the loyalty keeps pulling me back somehow. I have been trying real hard not to take things personal but that's not working. I'm stating to get super pissed off and I don't want to go there. Mayo Clinic Rochester Neurology department and comprehensive epilepsy unit is supposed to be ranked #1. I feel medically abandoned, dismissed and clearly there is a serious communication disconnect across the board. I'm not sure whats going on but I absolutely will not tolerate dealing with a toxic environment. My goal is to change Dr.s peacefully and move on, however I am not getting any return phone calls or return portal messages. So if anyone has any suggestions I would greatly appreciate some guidance. My daughter deserves better standard of care then she is receiving. Thanks and I look forward to some positive feedback

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Replies to "Hello, I am new to this blog; however I have a 26 yr old daughter with..."

@terik Frankly, you have been abandoned. Doctors as well as teachers and bus drivers have a tendency to move on or be detached. Happens to all of us. First, accept that fact. Second, keep reading the internet, especially these pages. Third, ask at places like church, or school, or Masonic, etc.
I am having the same thing. I have many AI diseases, and I am learning to put together a team of several specialists. It's about the only thing left. oldkarl

Hi @terik
It took me a while to find my epileptologist, but it was worthwhile the battle. I also have complex partial seizures (Temporal Lobe Epilepsy).
I was referred to my current epileptologist by a neurosurgeon who was referred to me by a mother with a son with epilepsy. Referrals work very well here in Brazil (I live in São Paulo city)! Unfortunately, I can not help you with referrals to a good epileptologist in the States. Perhaps your family doctor could be helpful? Have you tried to contact the Epilepsy Foundation in the States? This is a great foundation that could help you. Perhaps there are other people here in our group living in the same region that could refer you to a good doctor. In what region/city do you live?
All the best!
Santosha