Can you give me your perspective?

Our DD has not had seizure control since diagnosis 4.5 years ago. She's been through drug trials and surgery and at present she is down to one seizure every 7-10 days. There have been short periods of longer control but that was while on very high doses of multiple drugs. It felt like we needed to trade life in order to have seizure control. On high doses she vomits almost daily, rages, cries, lays in bed or stays awake for 20 hours at a time etc etc

I am not doing any wonder diet, I don't care to hear stories of it's miracles, you don't live in our house, you don't know our daughter. We don't have the support or the resources to do any of them.

My husband and I are at the point where 1 seizure a week doesn't seem so bad. She is happy and functioning better than any doctor has ever predicted her to function at.

Her neuros will want us to keep adjusting her drugs. I honestly feel that it's a exercise in futility and I just want her to feel happy and left alone to live her life.

I would like to hear from adults who do NOT have seizure control and how you feel about what you go through in the attempt to have it. Is it worth the drug effects? Is it worth the ups and downs? Are you able to work, live an "independant" life? Are you happy with your life?

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Permalink Reply by Lrjg on August 30, 2011 at 8:55pm

Marnie, You sound so positive on here!:) I understand how you feel about your daughter. It makes so much sense. Just curious, do they know what they missed when doing the surgery? Is there a possibility of having it done to eliminate it all together? I know from experience that the surgery is a hard/long recovery. At her age I was just curious if another one could take them away for good???? What do you think?

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Permalink Reply by Marnie on August 30, 2011 at 9:53pm

No they can't do any further surgery without seriously compromising her quality of life. Her entire left hemisphere is affected and VEEG's show seizures coming from different areas including one from the right hemisphere and one from her occipital lobe. It took us over a year of fighting just to get them to do the surgery they did. I can empathize with parents who do chose the more drastic surgeries but we just aren't in that group.

The temporal lobe resection they did cut her seizures from up to 30 a day down to what we have now and she's been able to go from toxic levels of topamax, keppra, tegretol and clobazam to her current normal levels of depokote and tegretol.

I admit I let myself hope for seizure control with surgery but now that we're well past it and things are the way they are I am more interested in just getting on with life.

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Permalink Reply by Betty Anne on August 31, 2011 at 10:00pm

A neurologist's goal is "no seizures, no side effects." first, what drugs are they on?

I'd love to have "no seizures, no side effects". I'd also love to win the lottery, but that's not going to happen either. I'm one of the lucky ones, though, because I just have about one complex partial seizure a month, where I go out of it and don't even remember I had it. That works for me.

My neuro tries, and I think he has done a good job. He wants me to be completely seizure free, but I don't want to add yet another drug. I said I was lucky because I live in NYC, so that the fact that I can't drive is irrelevant. Public transit is great here. I'm independent, and I live alone with my cat, but I'm never alone unless by choice. Work keeps me busy (I work for the State: Yay Govt. Benefits!) and I have a good support system.

Good for you for looking out for your daughter's total happiness and not just her health.

Betty Anne