Problems with Dilantin / Epanutin / Phenytoin?

First of all, let it be known that I am not a physician. The advice I give is from experience and research. So, the following is a backdrop to some of the information I stumbled upon. I hope this helps prevent a reader or their loved one from the same experience.

In June of 2010, my husband experienced a deadly seizure due to the negligence and mishandling of his seizure medication from a reputable Atlanta, GA., Neurological Department. There was a terrible communication problem with the staff, and lack of closely monitoring his medication. He is currently on 4 anti-convulsants. At the time of the seizure in June, 2010, he was on 3. These are the medications and amounts he was given: Dilantin 500mg -daily, Depakote XR 2500mg -daily, Keppra 3000mg -daily. In June 2010 he began Lamictal and is currently taking 200mg daily. The seizures started in December 2008. From that point, they continued every 4-6 weeks like clockwork. So our goal was to stop the seizures with the right anti-convulsant. The problem with our goal was that his doctors believed the seizures were happening due to a diagnosis of cns vasculitis. They believed this diagnosis was progressing and causing more brain damage. Therefore, medications were increased. This medication was divided into doses given twice a day. In May, 2010, my husband began to lose his ability to walk with a walker, sit up in a chair, tell me when he had to go to the bathroom, hold down food or drink,and would get dizzy when sitting in his wheelchair. When I attempted to contacted the seizure specialist, days would pass before a return call from a nurse. In addition, a home health agency attempted to contact them to no avail. We were simply requesting blood work to be ordered. A month prior to this we were at the doctors office and blood work was drawn but the results not reported. A week after this office visit, my husband was in the emergency room with another seizure, that lasted three hours!. Come to find out, the seizure happened because his Dilantin level dropped to 4.0. We found out later the lab results from the office visit. His Dilantin level was 6.0. It is supposed to be between 10.0-20.0 to be therapeutic. If this would have been communicated to us in a timely manner, the Dilantin would have been adjusted. Also,during this same time period, we had an appointment with the Neuroloogist in the same office. His report to us was that because of the seizure activity, he believed my husband was in active cns vasculitis. Therefore he wanted to put him in the hospital and treat him with high doses of Cytoxin that would most likely kill him. As a family, we disagreed with him, and voted against it. Five test (MRI's and lumbar punctures) from August 2009-June 2010, tested negative for active vasculitis. When we finally received the order for blood work in early June, my husbands Dilantin level was 37! So we were instructed to withhold the medicine until we came into the office of the seizure specialist. When we arrived at the appointment, we saw the nurse practitioner and she instructed us to stop the Dilantin permanently. When I questioned that decision, she said once Dilantin goes haywire you can't get it back to normal. The Dilantin was stopped and the Lamictal was started. Lamictal is a good switch for Dilantin. Of course, my instinct was to gradually reduce the Dilantin while increasing the Lamictal. Nevertheless, a few days later he went into status seizure for 2 days. He was in ICU for about a week in a half and in the hospital for a total of two and a half weeks. He was placed on a feeding tube due to his inability to swallow. When he was discharged I was given discharge papers to give to a nursing home for his rehabilitation. But we decided against that and took another route for his recovery. When I read the discharge summary, I noticed the time gaps between the medication given to him. When I questioned that with the pharmacist I was told about the interactions of these medications. One would increase another, and one would decrease another. They had to be spread out to be regulated properly. Now his medicine is given an hour and a half to two hours apart instead of 9am and 9pm. His blood work is taken every two weeks and he has had good levels with even a decrease in Dilantin. A decrease from 500mg to 275mg a day! We found his ideal therapeutic level is between 15.0-20.0. He has been seizure free for almost 8 months. If he has any breakthrough seizures, he has been prescribed 1mg of Ativan. The Ativan supports the effects of the Dilantin in blocking the out of control electrical storms. In conclusion, this is what I would like to leave with you:

1. Pray for God's guidance in any medical decision.

2. Have some type of family or friend accompany you to appointments for support.

3. If you can't remember all that is discussed at your appointment, take a voice recorder.

4. Keep track of your medication blood levels on a regular basis.

5. Research and talk to your Pharmacist about a plan for your medication dispensing times. Especially if you take more than one anti-convulsant.

6. Remember that physicians are not the Great Physician and therefore can make mistakes. It is our responsibility to be in control of our medical care.