How to Live Well with Epilepsy - Part IV - One for the Kids

So I've talked about Epilepsy in teens. I've talked about Epilepsy in young adults. I've talked about Epilepsy in adults and elderly as well. One thing I have skipped is the kids. God's little angels who often, unfortunately, happen to suffer much worse when it comes to seizures. So here is an article with tips on how to help your child live well with Epilepsy.



1. Be your own detective and keep a seizure diary for your child. Here is a link for a free seizure diary, but you can also use any old notebook or diary from WalMart, Target, etc. Make sure to note the following:

- What was he/she doing right before the seizure took place?
- Were there any triggers that you currently know of that caused the seizure?
- What time did your child take their medicine? Were they late today?
- What did your child eat today?
- Have you noticed any odd changes in your child's behavior? Ex: Not eating, Nauseated, Sleeping in late, Waking up early, etc.

All of the things above (and others) can help you notice not only the signs of seizures (auras) but also triggers. Maybe a certain food triggers your child's seizure such as soy. Maybe not eating is a sign that your child isn't feeling well and that a seizure is coming on. Being your own detective is very important to help you reduce seizures, and notice seizures that you may not have noticed before.

2. Alert the school, daycare, or any other care providers that your child has seizures/Epilepsy. If your child has seizures while you are away, others need to know. Using tip #1, you should be able to tell them the signs of when a seizure might be coming on. You can say something like "If you notice he's staring blankly a lot, or talking very slowly, he might be ready to have a seizure." or "If she isn't eating at snack time, and complains of feeling like she's going to throw up, that's probably the onset of a seizure. Make sure she's in good hands and call me immediately, please."

Doing this can make all the difference in the world. Leaving someone in the dark about a child who has seizures is dangerous. They may not know how to care for a child who has seizures, or they may not even know what seizures/Epilepsy is. So please make sure this is your top priority. Also, follow the next few tips that will really help when it comes to leaving your child with caretakers.

3. Print out a few of these handy charts to leave with daycares, school nurses, friends, family, babysitters, etc. Anyone who is watching your children can really benefit from having one of these in their home. Click here to print out seizure care charts.

A little sticky tape, a tack, or a magnet is all it takes to pin one of these to the wall of your child's daycare center, nurse's office, or wherever else they are staying while you are away. It can also save your child's life. You never know when a seizure will strike.

4. Get your child a medical ID bracelet, necklace, or keychain. In case a seizure happens while you are away, you need to make sure your child is covered as far as medical information, insurance information, etc. Many medical ID bracelets come with compartments where you can store paper information, emergency medications, or even USB devices where you can type up and save all your child's medical information in one place.

Here are some links to where you can get your child some great affordable medical ID gear:

Medical ID USB Dog Tag - $19.95

Build your own bracelet - Just For Kids

Engraveable Stainless Steel Dog Tag Necklace w/ USB

Full list of Affordable Children's Medical ID Gear

Alert teachers, babysitters, nurses, etc. that your child has a Medical ID bracelet/necklace, etc. on at all times, and show them where they can find it in case of emergency. Inform them to make sure that the bracelet/necklace/etc. is given to the police/firemen/EMS when they get to the building.

You can store insurance information such as your insurance ID number, company, etc. Seizure information such as symptoms, types of seizures your child usually has, and how you usually care for him/her. You should also be sure to store information such as medications (including mg of medication your child takes so the hospital knows how much medication to give your child), other conditions your child has, and whatever else you feel is important.

4. Keep emergency medication (Ex: Lorazepam, Klonopin, etc.) with your child. Whether it be in their backback, within their Medical ID gear, at your mom's house - make sure you do this. This can avoid a trip to the ER, and save your child's life.

5. Make medication as fun as possible, that way your child doesn't try to skip out or forget to take their meds. You can buy a pill box to remind you if your child has taken their medication or not. There are several to choose from and can be found at any local drug store such as Walgreens, CVS, or even just your grocery store. Here are some examples:

You can also make a dry erase calendar, or buy one from your local craft store, and use it to track medication. Let you child be interactive by rewarding them at the end of each week, or the end of each month, if they remember to take their medication every single day. You can keep an eraser and a marker nearby underneath the calendar, and your child can put an "X" for each day they remember to take their meds.

As a reward, you can get your child that toy he/she has been raving about all month, or maybe take him or her out for ice cream or to a movie with their friends or family. You and your child can decide on a reward that is right for them.

DIY - How to Make a Dry Erase Calendar

6. Make sure your child knows they are normal, and have faith in them. One of the biggest issues being a child, or even a teenager with Epilepsy is feeling like you are not normal because of the things you go through in your daily life. You see other kids running and playing at the park, or joining clubs and doing activities you want to do - but often parents hold you back because you are "too sick" or "something might happen" to you.

I know this from experience, and truth is, it never did me any good. Let your child join boy scouts, let your child join the little league baseball team. Let them do what they want to do, and have faith that your child will make it through even when things get tough. If things don't work out, they don't work out, but whatever you do, DON'T GIVE UP.

God bless,
Mandy Krzywonski
EpilepsyBlogger