forward2007
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A friend of mine said UCLA is one of the best places to go to treat Epilepsy.
Has anyone here ever gone to UCLA to treat their Epilepsy?
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Level 3 / 4 Epilepsy Center Map
Here is the Map for all Level 3 / 4 Epilepsy Centers
available in United States. Click on the State
or the one nearest to you.
Level 3 /4 Epilepsy Centers Map
Here is the Map for all Level 3 / 4 Epilepsy Centers
available in United States. Click on the State
or the one nearest to you.
Level 3 /4 Epilepsy Centers Map
forward2007
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Thanks for the info!
forward2007
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If I may ask Robin, what was it that you didn't like about the care there?
RobinN
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Our initial evaluation of Rebecca was done during a time that she had amnesia. We were still unsure why she had had seizures, vision loss, and now amnesia. From a 20 min evaluation, they decided that her situation was PNES. I am not sure if they even looked at her MRI and MRA. They certainly did not ask to see her first EEG which was abnormal. Even I could see that, but they did not suggest that I have a copy sent to them. I was unclear that I was the one that had to request this. They certainly could have suggested it.
The Neuro was very pregnant and (I am saying this having been in this situation three separate times), she seemed to be shaking, stressed out, looking at her pager every three minutes. The evaluation had been done by a resident and he passed his judgement on to her. They made up their mind right then and there, making up their mind while discussing Rebecca's situation in the hallway. He had asked Rebecca questions that obviously she would have had difficulty with, not remembering her past, so she looked to me for many of the answers. They finally did agree to a 24 hr VEEG which we had about a month later. The evaluation paperwork that I read after the fact were misstated, and had about 4-5 incorrect answers.
I was told that a 24 hr VEEG was like 7-11 putting on the security camera from 8-9 and the burglery happens at 10pm. One hour in a course of a month isn't likely that you will have any episodes. They did not even listen to me when I said many of the episodes happened at a certain time of the month. You would think that they would schedule it at a time when it would be likely to occur.
We arrived at the hospital on time, yet had to wait about 3-4 hrs for the room to be ready. This was scheduled way ahead of time. We were very patient. There were feces on the waiting room bathroom floor. Overall the nursing staff was wonderful.
The team of doctors that we had at the hospital, talked down to me. Took me as a out of control mother ( I certainly was distraught, due to the fact that my daughter couldn't remember 14 yrs of her life). In the evaluation, Rebecca being homeschooled for 2.5 yrs, and being a competitive skater were red flags to them. The Psych resident was the worst. She talked down to me and said rude things about my doctor (OB/Gyn) that gave me appts and did testing when others didn't have the time.
The pharmacist, didn't know what Taurine was. Told my husband and myself that she had never heard of it (perhaps she was a resident also). The Neuro and the Psych said that a girl this age should not be on any progesterone, even though it had been known to be helpful with catamenial seizures. They just wrote me off. Said she wasn't have seizures. The area on her MRI was not something that would concern them to think she had Epilepsy. Said all she needed was some psychological care. I already had this in place. In fact was talking with that doctor daily. She was flabbergasted as to their diagnosis. Even had a conversation with them when the seizures continued. They were adament that it was PNES.
When I asked about the left hand shaking and the head turning to the left... when I asked about the seizure that I witnessed while she slept... they said that anyone can have a seizure. I was open to the idea that the amnesia was possibly a psychological episode, but now that I know how her seizures have changed, and the medicine has effected her, I think differently. Even the neuro we went to after thought it was something related to her seizure activity.
Perhaps it was a complicated case, but the treatment was unacceptable in my book.
Sorry for the book version.
The Neuro was very pregnant and (I am saying this having been in this situation three separate times), she seemed to be shaking, stressed out, looking at her pager every three minutes. The evaluation had been done by a resident and he passed his judgement on to her. They made up their mind right then and there, making up their mind while discussing Rebecca's situation in the hallway. He had asked Rebecca questions that obviously she would have had difficulty with, not remembering her past, so she looked to me for many of the answers. They finally did agree to a 24 hr VEEG which we had about a month later. The evaluation paperwork that I read after the fact were misstated, and had about 4-5 incorrect answers.
I was told that a 24 hr VEEG was like 7-11 putting on the security camera from 8-9 and the burglery happens at 10pm. One hour in a course of a month isn't likely that you will have any episodes. They did not even listen to me when I said many of the episodes happened at a certain time of the month. You would think that they would schedule it at a time when it would be likely to occur.
We arrived at the hospital on time, yet had to wait about 3-4 hrs for the room to be ready. This was scheduled way ahead of time. We were very patient. There were feces on the waiting room bathroom floor. Overall the nursing staff was wonderful.
The team of doctors that we had at the hospital, talked down to me. Took me as a out of control mother ( I certainly was distraught, due to the fact that my daughter couldn't remember 14 yrs of her life). In the evaluation, Rebecca being homeschooled for 2.5 yrs, and being a competitive skater were red flags to them. The Psych resident was the worst. She talked down to me and said rude things about my doctor (OB/Gyn) that gave me appts and did testing when others didn't have the time.
The pharmacist, didn't know what Taurine was. Told my husband and myself that she had never heard of it (perhaps she was a resident also). The Neuro and the Psych said that a girl this age should not be on any progesterone, even though it had been known to be helpful with catamenial seizures. They just wrote me off. Said she wasn't have seizures. The area on her MRI was not something that would concern them to think she had Epilepsy. Said all she needed was some psychological care. I already had this in place. In fact was talking with that doctor daily. She was flabbergasted as to their diagnosis. Even had a conversation with them when the seizures continued. They were adament that it was PNES.
When I asked about the left hand shaking and the head turning to the left... when I asked about the seizure that I witnessed while she slept... they said that anyone can have a seizure. I was open to the idea that the amnesia was possibly a psychological episode, but now that I know how her seizures have changed, and the medicine has effected her, I think differently. Even the neuro we went to after thought it was something related to her seizure activity.
Perhaps it was a complicated case, but the treatment was unacceptable in my book.
Sorry for the book version.
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