New--scared/lost helping my daughter

[crazychick10793]

Sorry I'm so slow responding, I've been reading Rebecca's story, which prompted me to order the Jim Robbins book, which I've just finished. I live in a very rural area, and would love to give the neurofeedback a try, so far the closest practitioner I can find is 2+ hours away.
Thank you, Vicky, I will def give her the info, that is very sweet. I'm getting a little better at giving her space, and it seems about the time I let down my guard she has another one
She has had another one since the 6/28, on August 1. This time she was at a friend's house that was not prepared for it. She was going to church with some friends that had been briefed on what to do, then they stopped at another girl's house to change clothes where it happened. She dropped from a standing position this time, which really scares me, but thankfully only busted her lip. She had stayed up kinda late the night before but is still taking the Trileptal. Doc doesn't want to change meds just yet since it could have been a fluke from not enough sleep or her forgetting her pill and not admitting it (she was not at home at the time).
The range so far is three to six weeks. Not regular enough to tie them to her menstrual cycle just yet. Looking over my notes, I discovered that the last three times, she had an unusual (for her) emotional angry outburst exactly six days following the seizures. She becomes irrationally angry, usually with her dad, and is unprovoked. Not sure what to make of this yet. Later, she apologizes and mellows out. Her doctor has diagnosed her as moderately depressed too, not sure what started first or if one's causing the other.
We met with the school staff member who does 504s the other day, she seemed understanding and patient. I mentioned the problems with staff last spring but am trying to start new and give this year's teachers the benefit of the doubt; we'll see.

the emotional outburst could be linked to the seizures, i often have emotional outburst after a bad seizure too, however i am also diagnosed as Bipolar and a few other things so it's hard to say where my outburst are coming from

[RobinN]

The range so far is three to six weeks. Not regular enough to tie them to her menstrual cycle just yet. Looking over my notes, I discovered that the last three times, she had an unusual (for her) emotional angry outburst exactly six days following the seizures. She becomes irrationally angry, usually with her dad, and is unprovoked. Not sure what to make of this yet. Later, she apologizes and mellows out. Her doctor has diagnosed her as moderately depressed too, not sure what started first or if one's causing the other.

This still can be hormonal. I would say, get a calendar. Mark all pertinent information on it. It has helped me to color code it. You are beginning to see relationships and reoccurring situations. This will be helpful information.
Remember the cycle isn't always regular either, depending on exercise, diet, stress, sleep cycles, etc.

[karenb68]

Thanks ladies. We actually followed recommendation from her hematologist and my gyno to put her on loestrin birth control pills with iron. She has a bleeding disorder as well (this poor kid) and was menstruating anywhere from 10-18 days a month almost from the beginning. Her regular doc just kept saying it would either level off in time, or it was just her luck of the draw but we had her tested and she has something similar to hemophilia. The pills have managed after only two months to get her regular, thank goodness. It'll be interesting to see now if everything starts following a regular pattern.

[karenb68]

When the family she was with called the ambulance last week for a seizure, we let them go ahead and take her to the ER and one test indicated her trileptal level was still pretty low. so we meet with the neurologist today and she wants to double my daughter's trileptal dosage from 600 to 1200mg daily. I always cringe at the idea of dumping more drugs into the system, even if they're helping, ya know?

I also asked about testing either me or my daughter for metals since I started having severe headaches with nausea around the same time that her seizures started, when our house was being added on to. The doctor thinks this is "probably not neccessary unless our home is old". I asked about neurofeedback (I actually have an insurance that allows it if prescribed!)--she thinks there's not enough legitimate research to convince her it's not a waste of money. And then I totally forgot to ask about the ketogenic diet and/or a referral to a nutritionist. It seems I've found yet another doctor that feels like I'm stepping on her toes because I want to be involved and informed or try something that's not neccessarily the "easiest" solution. Grrrr.

[Nakamova]

How frustrating, I agree with everything you're saying! If you do up your daughter's Trileptal, ask about going very slowly -- just in case there's a chance it might work at a lower dose.

Your neurologist works for you. She can push her point of view and reject your suggestions, but ultimately she should be sensitive to your concerns. You might want to mention to her that neurofeedback has ZERO side effects...

[karenb68]

Thanks, I actually got so turned around in there I also forgot to ask whether her most recent (3rd) EEG showed anything. I guess she would have mentioned it if it did. If I can find a nearby practioner of NFB I may ask them what ped neurologists they've had referrals from, if they'll tell me. I'm lucky enough to have an insurance that will allow NFB but it has to be prescribed as part of treatment. I actually had maybe twenty 300mg tabs left so I'm taking it from the original 600 per day to 900 until I run out of those, then up to the 1200 total.

I met with her teachers today for 504 plan. Mixed bag. Since our school has such high turnover, we end up with a lot of young teachers, which can actually be good when it comes to open-mindedness. The special ed director (I think that's the title) wanted to insist she hadn't turned in makeup work in May and that was why she failed, but I had personally turned most of it in--just gave up trying to discuss that. she had a couple of teachers at the end of the last school year that were being a little pigheaded abuot her diagnosis. I'm trying to be optimistic this year.