When Doctors Prescribe Too Much - My Experience with Phenytoin

The last few weeks have been interesting at work. Most of the time, I've been working with a client who was born with Hydrocephalus and is also epileptic. He has tonic clonic seizures about every week or so, of which I've witnessed a few. He also has trouble with his bowels and so has been on Imodium and Phenytoin (for the seizures) since I started working with him in the Summer.

However, a few weeks ago, his dosage of Phenytoin was increased. While on shift, I noticed he'd become extremely unstable on his feet. He would fall back down after standing up and fall over occasionally - a sign that normally meant he was about to have a seizure. Looking through his communication book, it appeared everyone had noticed the same thing because each day the words "Michael has been very wobbly today" were written.  Each time I came on shift and saw him wobbly, I thought he might have a seizure yet he never did. It had also been noticed that Michael hadn't been eating very well.

However, the definitive moment (and one that I'll never forget!) came one night when I was working with him. We were walking down the stairs and Michael dropped something. He attempted to pick it up but, due to his unsteadiness, rolled down the stairs. This deeply embarrassed Michael and so he started showing challenging behaviour (hitting etc). After he'd calmed down however, I checked him for any signs of injury and other than a few scratches he appeared alright. I wrote about the accident several times (in the many different books) and informed night staff and on call, who were to keep an eye on him just to make sure there were no serious injuries.

Over the next few days, similar things happened to Michael, albeit not on the stairs, and he seemed to be losing his appetite. He was taken for a blood test at the hospital and when the results came back the next morning, the levels of Phenytoin were found to be too high and so his dosage was dropped again. Since then, Michael has had further blood tests to ensure the dosage now is now the correct one and hasn't been showing any of the symptoms of the dosage being too high.

Phenytoin is an anti-convulsant, used to treat tonic clonic seizures in epileptic patients by slowing down the impulses in the brain. It can come in tablet, both chewable and non-chewable form and also in suspension (as a liquid). There are many side effects to Phenytoin - some more serious than others. Depression and thoughts of suicide can occur as well as the loss of balance, co-ordination and appetite that Michael displayed, especially when the dosage is too high.


This whole case really brought it home to me the importance of pooling knowledge. Friends and family, or in this case support workers and Michael's key worker, need to monitor medication carefully and let doctors know of anything that seems out of the ordinary.