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BRE diag w/out text book eeg
Tue, 12/05/2006 - 11:17Topic: Parents & Caregivers
Hi, I wondered if anyone knows or has been diagnosed with Benign Rolandic when the eeg does not have typical pattern? I have talked to one mom who told me her daughters eeg also did not fit the pattern but she did out grow her seizures. What else do they look for. I am not sure it is that cut and dry, but would love any imput you have. Mar
Comments
Re: Re: Re: Re: Re: BRE diag w/out text book eeg
Submitted by ekoorb on Sat, 2006-12-09 - 09:58
I am confused- are you saying the doc says it is BRE or is he saying it is not? In other words is your doc saying its epilepsy but he is not willing to call it a certain kind? I had a discussion with our specialist last week and I had mentioned it seemed some of the doctors don't seem to be familiar with Benign Occipital Childhood E and he explained that not all doctors will refer to a specific syndrome. The french neurologists (our doc follows this pattern of thought) diagnose their patients in syndromes- in patterns so they can categorize and study and figure out patterns. Not all American docs follow this method. I may not be explaining this clearly.
To get to our specialist, we just had to make an appointment- no referral. It takes time to get in to the specialists but it is definitely worth it.
As to the seizures, our daugther has had 4 nocturnal complex partials over the last year. We only witnessed one (very scary staring off for about 7 minutes) and the other three we identified because while she slept through them, she wet her bed. Our doc put her on medicine but it is a very small "homeopathic" (as he refers it) dose. He did say that had he diagnosed it as BRE and she only had nocturnals, he would not have medicated her unless she had too many in a certain period of time.
BRE and BOCE are similiar seizures (vomiting, staring off etc.), both with good prognosis of out growing it by their teens or sooner. BOCE typically develops between 4 and 6 and BRE I think typically develops between 7 and 9 years old. A child who has BOCE can develop BRE after a few years.
Re: Re: Re: Re: Re: Re: BRE diag w/out text book eeg
Submitted by mar on Mon, 2006-12-11 - 02:51
I think he may fall into the(cat)of being one that does not refer to a specific syndrome. The reason I brought up the BRE is because he wrote on the eeg report that the pattern was not consistance for it, but when I shared with him what I had been told and asked him specifically was it an impossibility to have BRE with an eeg like hers and she replied "no". Which was good news, but then nothing further, like this is how we can be sure or lets do other tests to try to narrow this. I hope I cleared that up.
Thankyou for sharing your experience.
After that scary first one which did involve vomiting and wetting herself I recall along with other scary things we put a baby monitor in her room, and there is just no mistaking the szr sound. In her case we wait out the recovery phase & make sure she is awake and herself before we let her go back to sleep, it involves her speech and motor skills she has no memory of it, but just as soon as she can formulate a sentence she will ask if she has had one. (Not that the looks on our faces would tip her off at all!!)
I think for us as well the specialist would be the way to go.
Re: Re: Re: Re: BRE diag w/out text book eeg
Submitted by mar on Fri, 2006-12-08 - 22:03
Well this is where we are. We have had an MRI a Cat 1 EEG with some sleep deprevation. All the major tests came back neg, the blood work came back fine. The EEG was showing some Multi Focal Spikes on the Left side. We went to see the neuro that read her EEG He was of a similar mind set to see what happens not to just get her on meds. This has been a year and she has only had 8 nocturnal seizures, complex partials. I say only because what I have read on this site it seems light. The reason I wondered about the diag /specialist is because when I called him to see how we may better pinpoint what it is, he said we know what it is read back the EEG findings and said she has an epilepsy. That was just not enough for me. I asked him if it is out of the question based on the EEG that she may have BRE and he said no, I told him that I had talked to one- now two Moms where the dipole patterns were not consistant. What did you find your experience was with the epi specialist. Did you need a referral or could you just phone one. We choose PPO Ins. coverage. Mar