I hate seizures.
Like, I absolutely hate them.
My firstborn son Noah started having seizures when he was just two years old. That's how old Ivy is. That might be how old your child is. Think about it.
I thought he was being electrocuted. The first time. I just didn't know. I immediately called upstairs for my husband to call 911! My body thought maybe he was choking, or had gotten shocked by an electrical outlet, and in a few moments it would set in that I think he was having a seizure?
I had never seen one before. I would see many many many many way too many in the months to come.
Not only is it ugly, and scary, but it also tortures your mind. You are now not only mother and protector, but you become detective! What is causing this to happen to my child?
They will run tests. CT scans, EEGs, MRIs, blood draws, blah blah blah. They will probably not be able to find these tests helpful. So many come back "all clear!" or "normal!" the first time. Not all do, but ours did.
You will learn to be comfortable sharing a tiny hospital bed with your child, wrapped and weaving through the tubes and wires. You will do whatever you need to get to him. You give your sleep, your sanity, your life.
And yet, you can do nothing about the seizures that take over his body at any given moment, even when he was sleeping. I don't curse, you know, but when I would be holding him on my chest while he slept, and could feel his body jerk and collapse in my arms. Thems cussing times in my heart.
Days have new meaning. There is no Monday or Tuesday there is : 3 days since the last seizure.
He will walk around and "look" normal and people will comment "Look how good he's doing!" and you want to claw their face because they didn't see him that morning during a 5-minute-long grand mal.
They could never find a cause. Sometimes there will be reasons, like head trauma, vaccine reaction, illness, birth defects, fever, what have you. Other times it will be unexplained- or explained-away that almost every child has a seizure once or twice in their life. What about two hundred times A DAY?
Yes, that was our reality during Christmas of 2003. He had to wear a helmet, specially fitted in the occupational therapy room of a children's hospital. He all of a sudden was disappearing right before our eyes. His body was there, but not his mind. And this body was broken any way. Where was my baby? What happened? What did we do?
After a few seizures they will want them to take medication. Anti-convulsant medication has crazy awful side effects. So, on top of them NOT WORKING and only making him have more seizures (one of their "possible side effects") he suffered from all other sorts of crappy ailments due to medication. And he was only two years old. Once a perfectly normal child going about his normal little life to now wearing 24/7 a blue helmet with rainbow strap, on pharmaceuticals, and (what it looked like to us) dying.
Doctors remain stumped. It's criminal the lack of funding and research for a disease that affects more people than so many other in-the-spotlight diseases combined. Epilepsy is easy to ignore, I guess. Unless you're the mom.
It's criminal that meds are the first suggestion- I speak from our experience that meds should be the last resort. There should be more research to find ways to pinpoint the cause and then fix it! Not put a band-aid that won't stick on it!
I write with passion, and conviction. I still have hurt feelings. If I could do it all over again?
I would have never vaccinated our child. I would have never filled that first prescription. I would have gone immediately to a chiropractor and looked into diet changes. Meds only made my child worse. The Ketogenic Diet made him better. That's our story.
He's 9 years old, seizure-free SIX YEARS now. No thanks to meds, no thanks to doctors in our hometown, all thanks to banged-up on my knees flat on my face faith, knowledgeable pediatric epileptologists in Chicago, and the Ketogenic Diet, which, even though it made my son better is still considered a controversial treatment. It is almost always the last resort when it should be considered as a first line of treatment, and always under a licensed Ketogenic Dietitian's care.
Now, I of course can't claim it would work for everyone but GOSH DARN IT everyone should at least be given the option.
You can read the much more structured/less rambling outline of Noah's story here. He weaned off the diet in 2006 and has remained seizure-free since October 30, 2004. He has gained back almost everything he lost- still playing a bit of catch up on some skills but above all, he is Noah. We have him back, and I'm never letting go.
Noah is not the norm- many children and adults suffer from seizures all their life. I am trusting he will never have one again, but even after SIX YEARS the waiting and watching never ends.
Please find more info on what to do when someone has a seizure, know the different types of seizures, and more factual information that explains it way better than I do here. You can also check out the American Epilepsy Outreach Foundation.
November is 2010's National Epilepsy Awareness Month. I hope you will remember to share our story if ever someone you know has a baby or child suffering from seizures. We are a success story. And we are speaking up.
As always, I am glad to answer any questions you might have for me- feel free to email me : stephanie.precourt @ gmail.com.