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?
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.