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Dominic’s epilepsy is severe, so Julie has become a genuine expert at caregiving.

Julie and Dominic live with husband and father David and-twelve year-old brother Harry near London.

How has your family’s life changed since Dominic’s diagnosis?

Julie: We’ve all had to adjust, because of the care he needs. My first thought on waking each morning is: Can I hear Dominic?

YES, good, he is making noises
or
YES, good, he is shaking his bells.

Or, NO, there is no noise — has Dominic had a seizure? Is that why he is still asleep, even though he is normally up at 4am?

It’s also my last thought on going to bed: what will tomorrow hold for Dominic? Will he be okay and go to school or will he spend the day in bed as the seizures roll in?

When he had his first seizures seven years ago, we had no idea how profoundly and permanently our lives would be changed.

How have epilepsy specialists and other medical professionals helped?

Julie: Dominic’s epilepsy specialist is one of the best in the country. She also has a fantastic bedside manner and works with us to try to find a therapy that will improve Dominic’s condition. She helps us keep alive our hopes that the medical profession will find a way to prevent Dominic’s seizures. It’s so important to find a doctor with whom you can build a relationship of mutual trust and respect. In addition we have a specialist epilepsy nurse who is a vital point of contact. She has time to listen and can offer valuable advice.

You’ve got to keep trying any new developments that come along. During the seven years, we’ve tried about ten different drugs and combinations of drugs to control seizures. We’ve also tried the ketogenic diet and a course of steroids. None of these has made much difference. Sometimes a drug will work for a little while. But after a few months, Dominic seems to develop a tolerance to it and the seizures recur.

We keep a very detailed seizure diary in which we record up to 80 to 90 tonic-clonic seizures per month. This past May he had surgery to implant a VNS [vagal nerve stimulator]. Every month we go to the hospital to get it turned up. It’s not yet at the level where it works, but hopefully it will kick in within a few months.

What sort of community network can you depend upon?

Julie: It has taken time and been a battle but now we’re lucky to have excellent social services support. A carer comes in four nights a week, at ten o’clock. The carer stays awake with Dominic all night while we sleep, because some nights he might not sleep between seizures. He might pace or cry instead. He spends one night a week at the respite center. My husband stays up with him on Fridays and I do Saturdays. Then we sleep during the day if we need to.

Dominic is meant to go to a special school, but he’s not always well enough to go. He has a one-to-one learning support assistant. If he’s not well enough to go to school, and they have enough staff, they will send her to our home for a couple of hours.

Having the learning support assistant here briefly can give me a chance to get out of the house, get some shopping done, or get some chores such as washing and ironing done. When he’s having a bad day, you can’t leave him for even five minutes, because he might have a seizure. I never go farther than 10 or 15 minutes away when Dom’s home from school.

We’ve got excellent family support from our sisters and my mum. Harry, David and I recently got away to Portugal for four nights. Dominic had the night-time carer, and my sister-in-law and 18-year-old niece cared for him during the day. It was lovely — really relaxing, but it’s always difficult to be away from Dominic. His needs are so complex that I can’t help worrying. It can be difficult to keep him safe, because he’s mobile, yet does not understand his environment.

What advice can you share with other parents of children with epilepsy?

Julie: I’ll repeat the advice a friend once gave me. She said, "Do you know how sometimes people tell you to just take one day at a time? In your situation, sometimes you have to break your day down into more than that. You simply have to get through the morning, then get through the afternoon." She’s right. There are times when I need to just get through the next hour, and not look any further ahead.

During a bad seizure cluster, Dominic is too groggy to eat or drink at all. So on the really bad days I have to concentrate on keeping him alive. That means keeping him hydrated, getting 40 to 60 milligrams of fruit juice or a nutrition drink into him every hour with a syringe. It’s so important to keep him out of the hospital and off a drip.

My keys to survival include:

• Appreciate the good times—a smile, a hug, a giggle make it all worthwhile.
• Grab the time you do get. Going for a walk and meeting a friend for coffee can feel luxurious. Try to be flexible when plans fall through, but take advantage of those times when you can carry them out.
• Consider fitting in physical activity. For me, exercise is critical. I find that getting away to the gym is the best way to improve my mental health, as well as my physical health.
• If you can, get involved in a local support group for parents of special needs children. We have a local group, CommonSense, that’s a lifeline. We share issues that are difficult for others to completely understand.
• Build yourself a personal support network. I’m really lucky. I have four good mates I can lean on. I need people around me who know the score. And I have a professional therapist for those times when I feel I’m about to explode.
• Never settle until you’re satisfied with your medical care.
• Keep hoping that one day doctors will find a way to make the lives of everyone living with epilepsy much easier.

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