The Vicious Cycle of a Seizure

It's a vicious cycle having epilepsy and being a toddler. Here's the irony in it all-

FACT: The more seizures you have, the more you are going to have. This is why the doctors are loading him up on every anti-seizure drug they can think of. Except, in the Doodle's case, the medicine is NOT working. We only get to experience the awful side effects of these medications. Or is it working? Maybe he would be having more than he's having now. How would I ever know?

FACT: You will have more seizures in the heat or if you get overheated, yet I have to keep a hot, sweaty helmet on the Doodle most of the day. Since the heat from your body escapes from your head, I am trapping the heat in by keeping a helmet on him. If the Doodle gets too hot, he will not sleep or take a nap. Lack of sleep is a main cause of seizures.

FACT: Getting really upset can cause seizures, but not being able to do the things he loves the most like getting down and playing causes frequent melt-downs and fits. He can easily cry himself into a seizure.

FACT: Sometimes the side-effects of the drugs are worse than the actual seizures. Blurred vision, loss of balance, loss of speech, headaches, nausea, diarrhea, agitation, night terrors, other types of seizures, insomnia, etc.

FACT: Having seizures like this all day long prevents a child from cognitive learning. If their brains are constantly mis-firing it is almost impossible to get through to them in the way of teaching new things and having them understand.

FACT: Having seizures like this all day long, prevent the child from exercising, walking, running, and climbing. Their muscle tone, balance, coordination and motor skills suffer. Most toddlers with this type of epilepsy will regress terribly.

Seizures are cruel, debilitating and senseless and I am growing to hate them more and more with every breath I take. Please don't tell me that God has a plan or that there is reason for everything or that I am meant to learn something from this. There is nothing harder than watching this beautiful, innocent little boy suffer all day long and live inside this vicious, ironic cycle he can't get free from.

Doodle on the Run

Here's the Doodle in full action mode.

He's very fast. All I can think is DANGER! DANGER! DANGER! Keeping up with him is almost impossible and with the 30+ seizures a day I don't have one nerve to spare. I'm on high red alert all day long. But when he's playing and NOT having a seizure, he's having so much fun. At least with him not being so mobile and sitting in bed or in high chair most of the day, we can work on things like drinking out of a cup and him brushing his own teeth.

I called Home Depot and they sent some moron out here to measure because we have so much tile and I need to have it carpeted for when the Doodle has a seizure. I don't know what else to do. I can't keep him locked in my room all day long or upstairs (the only places we really have carpet). So I carefully and painstakingly explain our seizure situation with them on the phone and they send out this guy who was clueless and did not want to measure. He kept trying to leave and have them send someone else out. He told me I was going to have to rip out the tile, ok, not my first choice, I thought they could carpet over the tile but whatever. I need to do this. Because he thought the tile looked nice, I shouldn't do it. So I re-explain what is going on here and tell him why we are doing this. That yes, this is quite a bummer and not anywhere near ideal but we have to do something. He told me I should throw down some rubber mats or glue some carpet squares down. So I told him NO, here's where you need to measure, this is where I want the carpet. Again, he argued with me. Not thinking it was a good idea because it might not "look" that good. Meanwhile the Doodle had a head-drop seizure right in front of him, fell down and hurt himself, and was now crying the hysterical, inconsolable cry.

I said, "See, this is why I need carpet! I don't care what the &%#@ it looks like...Just shut up and MEASURE FOR THE CARPET!"

Then, he had the audacity to tell me, "No, he just tripped".

I almost lost it. I already have a short fuse with people. I had to go to my happy place and count to FIVE. I usually try to count to TEN but with this guy, I could only make it to FIVE. It might appear to someone who has never seen a head drop seizure that it was a trip and fall but this was not and now I had to try and explain to this guy what really happened. Short of my kicking his ASS and calling Home Depot and complaining, he finally shut up and measured. Normally, I'd go to the YELP.COM website and bitch about it there, now I have this terrific forum for complaining.

On another note, Jimmy is reading a book called, "Let's Talk About Disobeying". We make him read for at least 20 minutes a night and I get to chose the material. I'm not sure if it's the braces or what but he has become quite a mouthy little 9 year old lately. Maybe it's the hot weather but he thinks he's all that and a bag of chips. I'm fine with giving him time outs, canceling play dates and taking T.V. and his video games away. We have a few fun little trips planned this summer but we are "staycationing" and staying home most of the summer. With our work schedules and the Doodle's health issues, it's not even a possibility to take a family vacation right now.

Jim has been working out at the coast and says it's hard for him to pass all of these motor homes and campers, these light-hearted people with normal lives going camping with the family and doing the things we used to be able to do. It's a real reality check when you have a child with special needs and figure out that being carefree is a memory. We're going to Disneyland later this year and depending on how the Doodle is doing and if we can control the seizures will determine whether we bring him or not. It's a hard decision because I have to worry also about Jimmy and his childhood. I want him to have drama and chaos free memories and know that he is also very important to us. I have a lot of guilt that he is getting short changed here since all of the focus is on Dom.

A Little Man of Few Words

Maybe Dominic is not talking because he doesn't have anything important to say right now. Maybe he will be a man of few words. It's just sad that our cat in heat is putting out more sounds and language than Dominic as she chatters about the house wanting outside to get laid.
The Doodle understands so much and I watch him soak things in. I keep waiting for that huge language explosion from him. Any day now.

Today was a hard day for the Doodle. 8 head-drop seizures before 8:00 a.m., I could tell he wasn't feeling right. His balance is off and his eyes are more glazed than usual. He sees his little push cart, his eyes light up and he wants to get down and play so badly. Pointing to his head and grabbing my face so that he knows I am seeing and listening to his request, he doesn't understand my reluctance. So, against my better judgement, I let him down and then minutes later, BOOM! I hear the nauseating sound of his helmet slamming to the ground and then his wailing cry. Every time I hear that crash, my heart stops for a second and I wonder what injury he's going to have. I hold him in my arms and love him, telling him it's going to be OK. I kiss him and squeeze him until he stops crying and then he wants down to do it all over again.

Our Besty Angel came to work with him today but he could barely function and was unusually more upset, so she took him for a nice walk in his stroller. He likes to go outside no matter how crappy or out of it he feels. I am hoping the beautiful and smart doctors at Stanford will shed some much needed light tomorrow. I'll keep you posted.

I did my best on the bread tonight, but in my defense, I'm a little side-tracked. Jim came home from working in Elk for a home cooked meal and had to put the garlic bread out with a fire extinguisher. I've never seen garlic bread burn like that before. Jimmy was screaming, "Put it Out! Put it Out!" It was like a campfire in my oven. Will I ever get this smell out of our house?