Sunday, April 3, 2011

It's that time of year

Springtime is hard for Drew.  He started having seizures the year he was six.  It began in May and raged on all summer long.  We went through several doctor's appointments, a CT scan (nightmare!) different anti-seizure medicines, and so forth.  The anti-seizure meds made him lose control of his bladder.  He was already toilet-trained at the time, so it was highly anxiety producing for him.   We ended up taking him off the meds and just dealing with the seizures.  It got better over the fall and winter, and he only had one or two seizures, and that was when he was sick. 

The following spring, around April or May, they started up again.  He has allergies, so we made the possible connection between the time of year when his allergies are at their worst and the increased seizure activity.  We talked to Dr. Berry-Kravis, his pediatric neurologist/Fragile X specialist and she said she's heard of all kinds of bizarre triggers for seizures.  She said she couldn't rule that out as a possibility.  We started giving him  Claritin every night, and it seemed to help with the seizures.  The thing we noticed is that they were shorter than the year before and we could sometimes stop them from going into full-blown seizures.

I think the whole thing is unsettling to him and it causes his anxiety to spike.  Last week on Tuesday at school, he was on the computer and started screaming and crying that the computer was broken.  He was slapping himself and was very upset. He cried for 45 minutes or so and started gagging and acting like he was going to throw up.  When it was over, he told his teacher, "I'm better now!"  which for us, is a tell-tale sign that he had a seizure. 

Drew has partial-complex seizures.  From 
Some partial-complex seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach. Then the person loses awareness and stares blankly. Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums). Less often, people may repeat words or phrases, laugh, scream, or cry. Some people do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.

This is how his seizures usually happen:  If we are in the room with him, we may notice him rubbing one side of his face or picking at it (aura?).  A minute later he lets out some blood-curdling screams.  He will start to drool and hold his mouth in an unnatural position.  He cries and says something like, "Mommy!" or "Watch a movie,"  repeatedly. His speech is slurred.  Sometimes he'll ask for a tissue.  Only when you get him one, he will scream and push it away.  If it is a bad seizure, he will gag or even throw up.  Sometimes they cause him to have a loose bowel movement.  He almost always slaps himself and picks at his chest when it happens.  And when it is over, he will almost always say, "I'm better now!" like he can't believe it. 
I hate it for him.  Heck, I hate it for all of us.  Yesterday he did this, and Blake sat in the other room and cried.  Eric had to go comfort him while I dealt with Drew.  It is stressful for all of us.  Drew's anxiety is really bad during this time of year.  He doesn't want me to leave, even for a few minutes.  This week, I had to go to work at 7:30 every morning to cover for a coworker who was having surgery.  Eric had to get the boys off to school.  Of course he is capable of doing this, but Drew was upset by the change in routine.  And add in the recent return of the seizures, he's in a constant state of fear.
He is very clingy and easily upset and probably will be until June.  Blech.  Pray for our sanity!  :)


Punkin's Oma said...

I'm so sorry this is happening. It is soooo hard for our kids to understand minor things and when something major like seizures happen, it is a nightmare. I will pray for your family and hope that the seizures don't last long.

Lisa said...

Poor, poor Drew. I imagine that the seizures are almost more scary for Blake since he realizes what is happening and is watching his brother suffer from it. I'll keep your family in my thoughts and prayers...

Bonnie@TheFragileXFiles said...

Um, wow. I'm watching my boys for signs of seizures, so this was very educational for me. I hadn't realized they could be so - functional. I thought it was just like you see in the movies - you know, laying on the floor and thrashing around. Wow.

Kristiem10 said...

Well, there are different types of seizures. We've been told in the past that they are partial-complex seizures. I have been in communication with Dr. Berry-Kravis and she is trying to figure out if it is something other than seizures. They are not supposed to last as long as these episodes are.

holly.lynn said...

SO sorry you have to deal with this. Hug from afar! Will be thinking of you and your dear boys.