Wednesday, September 23, 2009

I'm having one of those roller coaster days

As I type this, my sister is in the hospital, in labor with her first baby. I am very excited, and also very anxious. I think she and her husband know I'm a little cuckoo with concern because he's been calling every few hours with updates. Like he needs to be worrying about me!

After what I went through with Max's birth, I know how horribly wrong things can go. I can't help but freak out a little. Meanwhile my mother told me that my dad, who has Parkinson's, has been muttering about how something's wrong with Judy. We think he may be confusing what happened to Max and her pregnancy, but it's still unnerving.

The other half of my anxiety: last Friday a nurse from Max's school called me at work to report a teacher had seen him staring into space for about ten seconds. The concern is absence seizures,, also known as petit mals. The teacher called his name but did not touch him, which would have been good to try to see if she could snap him out of it (if you can break the trance, it's not an absence seizure). The neurologist didn't think it was a seizure, but said to keep an eye on him, which is what I asked everyone at school to do.
Max staring into space is not a new thing; he does it, and I can always say his name and he'll snap out of it. His brain needs time to organize itself. He can also zone out when he's in noisy settings.

Yesterday, the nurse called to say she'd been observing him and he'd stared off into space for four seconds. She could not snap him out of it. I told her I wanted her to speak directly with the neurologist; often, he has a bunch of questions about what was noticed, and I thought the two of them should talk. They did today.

The neurologist and I spoke tonight and decided, once and for all, we needed to do an ambulatory EEG (they attach a monitor to Max, we go home and click a button anytime we notice any unusual behavior, go back to the hospital the next day and may have to do another day if nothing shows up). Absence seizures, he explained, most often crop up in kids between ages 4 and 8; it's related to the development stage their brains are going through then. Reassuringly, he said this type of seizure could NOT cause more brain damage. The biggest problem is that kids who suffer this lose clips of time here and there from tuning out. It's disorienting. It can interfere with learning. But, absence seizures could be quickly treatable by putting Max on a new medication (he currently gets one and a half teaspoons of Trileptal twice a day).

Words alone could not express the relief I felt when the doctor said there was no risk of brain damage. Still, the fear of seizures has me in its grips. If I had to play armchair shrink, I'd say the reason is this: I can usually act like everything's going well with Max because he basically looks OK and while he has his challenges, I can pretend they're not so bad.

With seizures, there is no denying that I have a child with brain damage.

So, I am excited for my sister's baby, I am anxious about my sister's baby. I am anxious about the seizure thing, reassured that it's not harmful, and dreading dealing with an EEG.

The roller coaster of emotions you can experience in a mere day when you have a kid with special needs is just unbelievable.


  1. Oh how I get it. Emma does have seizures, and I guess I have come to some sort of grips with it. Hers are triggered by startles. I have come to learn that most seizures don't cause additional damage. I know that is not always the case with some of the biggies, but I just want to make you feel better. I like to look at them at progress in some way, like the brain is not stuck, that it is moving forward through a stage. I have noticed too that Emma generally come with some small victory or milestone and soon subside once she gets a handle on the new skill.

    Obviously, I am no expert! Now, chocolate...that is something I excel in.

    I also understand the anxiety that you have for your sister. Lord knows I do. Emma was injured during her horrific birth, and I can nearly throw up just thinking about it. Aside from battling Emma's challenges, I never overcame the anxiety (nor did my husband)to the point that we never tried to have more children. Now that Emma is getting close to 6, I am regretting that I let my fears deprive us.

    I do undertand though. My sister is trying to have a baby, and I am sick with worry that something will go wrong.

    So, I get it.

    I don't really have any advice. I have yet to heal personally, but I did want you to know that you are not alone on that rollercoaster.


  2. I have no advice for you either, but you do have my empathy. I hope everything is well with Max and that your sister's new baby is hale and hearty.

    Hang in there, Ellen. Don't forget to breathe.

  3. You know, my husband's step brother had absence seizures as a kid and now he's a completely normal electrical engineer (if you call engineers normal). We also had a kid with mild CP at a school I worked with and he had absence seizures as well, but was fully integrated in regular classes and really just seemed like a kid with a funny walk.

    Pretty much any seizure that isn't IS doesn't cause brain damage. The fear is always the other things that happen while the kid is checked out.

    I think what Amy says about gaining ground after a seizure is fascinating--she's not the first parent I've heard say that.

    We're investigating some diet changes for Charlie as I'd really like to stop giving him his current seizure med--I'll keep you posted on how that goes!

    Congrats on your new neice--I'm sure she's just fine.

  4. Ellen,
    I agree that they are the worst. I can deal with everything else but how do you deal with feeling so helpless b/c you never know when one will strike! Faith has these types of seizures, we have always had them called focal seizures, but it is hard to tell when she is having one or just zoned out. I am always watching her like a hawk. I will say that they never seem to bother her.

  5. Congrats on become an Aunt!

    Reading through the seizure stuff...Kennedy always had and has those spacey looks...they are always so hard to know if its seizures of just them needing that time. My step daughter also has absence seizures. She has no other medical issues, so was diagnosed around 7yrs old when she acted like she wasnt paying attention. She had some close calls before the diagnosis...riding bike into road, walking into a parked boat at a gas station, walking into the road...then there is the possibility of not getting info in school and it affecting their academics. The ambulatory EEG definitly sounds like a great idea. Good luck!

  6. I'm sorry you're having to look at the possibility of seizures. We, too, have been so far fortunate in that we have seen none. I know it's always a risk. I hope the EEG will tell you what you need to know, and I truly hope its nothing. I know you'll keep us posted, and you'll all be in my thoughts and prayers!

  7. I haven't heard of an abulatory EEG's. Luke is scheduled to have a sleep-deprived EEG on Monday morning. If it doesn't indicate anything and we still notices things (mainly the teachers at school were), then I will have to talk with the ped about one.

  8. congrats on your new niece! I can just imagine the roller coaster of emotions! Hopefully you got some answers as to whether or not he was having the petit mals or not.

  9. With seizures, there is no denying that I have a child with brain damage. NOT necessarily, I once knew a girl who had seizures yet no brain damage. Well not that that I knew of anyway.


Thanks for sharing!

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