Beth's Mom

KoKo,
Beth was put on Depakote in 1979 when she was barely a year old...in those days they called it Valproic Acid, which was not too comforting...said a doctor in England had developed it for his daughter who had seizures and it was relatively new to this country.

In 1994 at the age of 16, Beth was changed to Felbatol as she had gained weight up to 250 lb. and the grand mal seizures were not being contained. We were told that Felbatol would be the wonder drug to solve all our problems...we think that the drug rep must have really sold our neurologist on the med. (we have had the same neurologist for Beth since she was
1 1/2 yr. old and feel we trust him). We were thrilled when the weight just started to roll off of Beth, so we left for the summer cottage in a remote area thinking that we were going to have a great summer.

Three months into Felbatol we began a roller-coaster ride of sorts. Beth was acting defiant, vomitting, twitching,and making weird hissing sounds like a crazed animal. I was afraid to go to sleep at night for fear she would be dead by the morning as she was barely keeping liquids down and did not want any food. I tried to call our neurologist but he was on vacation. I contacted a wellknown hospital in the area to get her in to see a neurologist, but was told I could only get in with our neurologist's referral. Finally I spoke with a woman who put me in touch with the head of the unit at the hospital and he agreed to see us. When we described all the weird things Beth was doing he calmly said they were typical side effects she should eventually get beyond...he was reassuring, but did nothing else to help...we figure he must have known what was coming down the road.
Just a week later our son at the dinner table noticed they were talking about Felbatol on the evening news saying that doctors were being told to take their patients off of Felbatol unless it was the only medication working for seizure control, as people had died using it. I cried and panicked...we packed our bags and headed home. Beth vomitted almost the whole way back...a nine hour trip.

We got in to see the neurologist and I told him he had not been there for us when we needed him. He agreed and said that he had not known how severe a drug it was, but that Beth would have to stay on it as withdrawing her would be far more dangerous at that point. He lined us up with a nutritionist and I found a caregiver at $250 a week to watch Beth so we could return to our teaching jobs. I cried on the way to work and on the way home each day, not sure if Beth would make it those first few months back. There was a rumor going through our town that we had taken our daughter in for some mysterious cosmetic surgery to lose her weight which I found really disturbing...I calmly called the woman at the heart of it to tell her I would appreciate her correcting the story as she did not have any idea the pain she was causing us to pass untrue rumors when we were so stressed...I doubt she ever forgot the phone call as I was more assertive than I have ever been in my life! Then came the night I hit rock bottom. My husband had listened and pitched in all he could to share the load, and I had not been to church enough to call our minister. So I got down on my knees and prayed to God that his will would be done with Beth...I realized that I was telling God to even take her if that was his plan. I had never given up anything totally to God's will before. The next day my husband said the caregiver called and asked what we had done different with Beth as she was so much better. He told her nothing, but I told him there had been something. From that day I have looked to the Lord for his will. And from that day on Beth continued to improve. I came to this message board and am reading as much as I can of the previous board to see if I can find answers as I honestly feel I am being led by the Lord to do so.
Beth is still on Felbatol, her weight has levelled out at 140. She is a picky eater, but fairly healthy and beautiful. We have added Neurontin to help her be able to have an appetite and also a sleeping pill week nights to help her get a full 8 hrs. on school nights.
I dread if we ever have to take her off the Felbatol. I will admit that Beth looks prettier and feel changing could influence that, but worse than that it was so hard getting her onto Felbatol that we are worried what could happen to her if we take her off. Our neurologist says there have been new meds that have come out that are promising, but we are at present trying to make the most of what we have her on. We are reluctant to try any more than two meds together at a time for seizure control and would prefer just one if possible.
Sorry, I know that this is a long answer to your question...to talk of it brings up even more tangents than I have mentioned...our lives have felt like a mini-series movie for some time now.
Thanks for caring to ask.
Beth's Mom