New Diagnosis...How Do You Deal?

200,000 people will be diagnosed with epilepsy during 2010.  Isn't that astounding?  200,000 people that either have been experiencing seizures for a long time and they've just come to this diagnosis, or people that will experience a seizure for the first time. 

The first time my daughter experienced a seizure, she was 16 months old.  She had a little cold, and I had just taken her temperature and given her tylenol.  We were sitting in the rocking chair in her bedroom playing a game where she would lean back and when she came back up, I would tickle her belly and she'd giggle.  She'd done this several times, and we were having a fun little time.  Then she leaned back, and didn't come back.  I said her name.  Nothing.  I looked at her eyes.  They were rolled up in her head.  For some reason, I knew immediately what was going on, though I'd never had experience with someone that had epilepsy.  I picked her up and ran down the hallway to our living room, and placed her on the floor on her side.  I called 911, and then experienced seven of the most terrifying minutes of my life.  That was over six years ago.

At first I was told that the seizure she experienced was because of her fever, but I knew that there was something else going on with her.  It took two months and about ten seizures before a doctor would say it was epilepsy.  Then it took nearly six months before we had a decent neurologist that could treat her condition. 

Dealing with my daughter's diagnosis is one of the hardest things that I've been through.  Most people don't understand why a diagnosis of epilepsy is so devastating, and admittedly, I didn't fully grasp what we were entering in to until my daughter had been hospitalized the second time.  I got it then, and I realized that things were going to get bad before they got better, and every facet of our lives was going to be affected.  You really do go through the Five Stages of Grief (Info Here).  I spent a good many years denying that our lives were being affected or that my daughter had lost some of her ability to function as a normal toddler.  When I wasn't in denial, I was angry.  I would cry tears of rage at the drop of the hat.  I wanted to fight someone or something, but how do you fight a seizure?  How do you beat it up?  I didn't spend a lot of time bargaining, hoping that if I just did this then she would get better.  I knew then that it wouldn't work.  I did become very depressed, and it took over a year for me to work through it.  I ended up going to a doctor, and going on antidepressants because of it.  Then I finally accepted what is going on, but that didn't happen until I made the decision to become active in epilepsy advocacy and get word out.

Suggestions for dealing with a new diagnosis:

1. Information is your friend and your weapon.  When my daughter was first diagnosed, I felt like I had been thrown in an ocean and expected to know how to swim.  I had no idea what her official diagnosis of "Complex Partials with Secondary Generalization" meant.  I had no one to ask about it either.  Because of this, I hopped online, and went to the Epilepsy Foundations's website, and read as much as I could.  I also read the book Seizures and Epilepsy in Childhood: A Guide (Johns Hopkins Press Health Book).  That book made me feel like I'd finally been given the rules to a game I didn't know I had been playing.  Gain as much information as you can.  It will not only help you understand what is happening during a seizure, but it will also help you see future symptoms and know when they are something worth mentioning.
2. Begin keeping a seizure log. Time the seizures, and write down what's happening before, during, and after.  It helps with doctors' appointments, and it also helps make any triggers or patterns obvious.  Plus, it gives you a certain amount of control over the situation, and in my opinion, the worst part of epilepsy is the lack of control over what is happening to you or your child's body. 
3. Know about treatments and their side effects.  Know the drug names and what they can do to the body.  Side effects can range from dizziness to swollen gums to liver failure to low blood count.  Keeping a check on the side effects is important because they can be more dangerous than the seizures.
4. Keep and open dialogue with your doctor, and ask lots of questions. This one is still in the vein of gaining information.  Pretty soon you're going to realize that your biggest ally in this should be your doctor.  I think of my daughter's neurologist as the unofficial fourth member of our family.  He always returns my calls, and he always has time for my questions.  The icing on the cake is the fact that when I share my thoughts on what is going on, and make suggestions for how to proceed, he listens and often times, he agrees with me.
5. Find others in your shoes, and talk to them.  The Epilepsy Foundation has a wonderful forum that allows people to talk to others like them.  The Parents Helping Parents Forum is especially helpful, and wonderfully supportive.
6. Find your own personal support network.  Whether it be friends or family, every person that's dealing with a new diagnosis needs someone to talk and vent to.  I'm lucky in that I've got a wonderful group of friends, and an amazing family that has been there with me every step of the way.  However, I've known parents that their families have told them that epilepsy isn't a real diagnosis, and they're over medicating their children because they don't want to deal with them. 

Dealing with a new diagnosis isn't easy, but if you can maintain a feeling of control over the situation, it helps.  It won't make everything all better, but it definitely will help.