Childhood Epilepsy: At Home and School
There is much to know about epilepsy but luckily there are also many resources available.
Epilepsy is one of the most complex disorders that a child can have. It also is one of the most largely misunderstood disorders. Despite working for almost 10 years with families that have children with special needs, when my son started having seizures, I was floored by how much I didn’t know. Like most people, I thought that people have grand mal seizures, they take medication and the seizures go away. I’m oversimplifying but I think much of the public has that perception.
Epilepsy is so much more than that. It must be managed both at home and at school. Management of seizures doesn’t always mean no seizures either, just a great reduction in seizures.
Here are some tips to help you get some stability and security in your household if your child has been diagnosed with epilepsy.
Get a second and a third opinion, as well as at least one overnight EEG. Different neurologists favor different treatments, so you want to explore all your options. You’ll also need to read about medications and their side effects. There are dietary treatments as well. A good neurologist will tell you if that choice is appropriate for your child.
If your child doesn’t already have one, he or she will need a 504 or IEP at school. Both the 504 and IEP should feature a thorough seizure action plan. Templates for these are available online.
Get to know the school nurse. My son’s school nurse is one of my new best friends. Nurses know medications and they know what to watch for. I always recommend to parents that they administer all medications at home if it’s possible, but the school nurse will need to have and administer emergency medications.
Join email lists. There are several great epilepsy- and seizure-related charities in our area, and Philadelphia is home to some world-renowned pediatric neurologists. Take advantage of this and get their newsletters and consider attending support groups.
Read all you can about seizures. I was surprised to learn that there are dozens of different kinds of seizures — many more than just grand mal. And, no one uses the term grand mal anymore. They are now referred to as tonic-clonic.
Learn about surgical options. There are also VNS (Vagus Nerve Stimulation) devices, which are non-medication ways of treating seizures.
Keep a journal. Seizure medications are difficult because the child must build up to a therapeutic dose and then be watched to see if it works. If it doesn’t work, you can try a higher dosage (ask your neurologist!) but a child cannot just stop taking medications. He or she must be weaned off gradually. For this reason, you want to be counting seizures and types of seizures each day, in addition to moods, behaviors and sleep/eat patterns. A journal will be a huge help during this time as your parent brain is trying to process a lot.
Take time for you. Epilepsy is extremely stressful on the entire household. Take time for you to relax, or even consider therapy to talk things through. If you see siblings getting anxious, get help for them too. Your pediatrician will let you know if it is appropriate for them to be screened for epilepsy.
In the end, know that stability and calm can be achieved. There will be periods of stress and chaos, but there will be good, calm times too. Enjoy them!
Lisa Lightner is a freelance writer.