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.

Good doctors for special-needs kids vs. bad ones

You know those Wordless Wednesday posts other blogs do? Well, here at To The Max it's Word-Filled Wednesday, cause I've got a lot to say. Thanks again to everyone for the reassuring messages about Tuesday's seizure scare. I was sorry to hear that some of your kids have been having them.

On the train to work, I called the nurse at Max's school and asked her to describe what she was seeing that had concerned her. Turns out it was this weird movement Max occasionally does in which he grimaces, stiffens and raises his arms, all at once. The whole thing happens in maybe two seconds, then he relaxes and he's back to usual Max.

I told the nurse that he has been doing this for years, and that I had pointed it out to the neurologist when I first saw it. And then I explained why sending home forms titled "ASSESSMENT OF SEIZURE ACTIVITY" can be very unnerving to a parent and that going forward, I would like a call. Later on, I spoke with our neuro, whom I absolutely adore. Dr. C is smart, nice, sane, funny, down-to-earth. Every mom of a child with challenges needs a Dr. C in her life. I told him what had happened and he basically said that at worst, what I was seeing is a tic but because Max is wired differently than other kids, what might just be a shoulder shrug for a typical child would involve Max's shoulders along with his arms and mouth. (Interestingly, studies show that one out of every six boys in elementary school has tics.) There is no kind of seizure that fits the description of what Max has been doing.

Dr. C is amazing. In contrast, I think back to this one doctor I visited when Max was three months old. He was a neonatologist, someone who specializes in the care of newborns. In the course of examining Max, this doctor told me that the only other moms he'd seen whose babies had suffered strokes were crack moms (yes, he said that). And then, when he finished looking Max over, he told me that Max's limbs were very stiff. He told me that a bilateral stroke was a serious thing (no shit, Sherlock). And then he said "His future looks ominous." That's when I started crying. He said, "Hasn't anyone told you that yet?" I couldn't even respond, I was so despondent.

I ended up seeing the social worker in his office afterward. And as I sat there blubbering my heart out, I got good and mad. I told her that he had no right to use a word like "ominous," that no doctor should ever use that word, that babies' brains are plastic, that Max had potential. And if I didn't have HOPE, what did I have? I walked out of there and never came back.

I do have fantasies about marching back into his office with my walking, communicative, bright, personable Max and saying "SEE?!" But a doctor like that, well, he'd just look at Max and say: "He's not talking, and his limbs are still tight." Who needs that?

I'm curious, tell me about a doctor you've taken your child to who you adore—and a doctor who you wish you'd never met.

Scared of seizures

Ah, how much can change in a day. Yesterday, it was 65 degrees and Max seemed fine. Today, it is a snowy winter wonderland and I am a little panicky about the possibility that Max is having seizures. I fear them. No, make that, I am terrified of them. Max had seizures at birth and a grand mal at one and a half, and the experience was just as traumatic as those two weeks at the NICU after he was born.

When I was at Max's school last Friday for his birthday, a couple of aides mentioned that they noticed he sometimes stared off into space. I've seen Max do this, but I can snap him out of it by saying "Max!" The underlying fear here is absence seizures.


Here's a video of a girl having absence seizures. They're subtle, but watch how she spaces out and her repetitive jaw movements. I first saw this video over at Fighting Monsters With Rubber Swords; watching it was worse than seeing a horror movie.

The second I left the school, I called the neurologist. Who got back to me and confirmed that they weren't absence seizures if we were able to break him out of the trance by calling his name, by touching him, by giving him a new visual target.

So, I shot off an e-mail to Max's teachers, therapists and the school nurse mentioning the above and saying they should try to break his stare if they see him doing it. Tonight, I came home from a work holiday party to find a form in Max's school book from the nurse. The top of the form says, in all caps, "ASSESSMENT OF SEIZURE ACTIVITY." My heart skipped a few beats. I read down the checklist. She noted he was staring, his arms and hands would stiffen, and that in the "post-seizure state" he would spastically move his arms. And that "this is worth reporting to the neurologist." Nowhere did it mention whether she'd tried to break his stare. Which is why I am sitting here at 12:10 a.m. and worrying.

I know this nurse means well. Yet I am agitated that this Form Whose Name Shall Not Be Spoken was sent home to me, no phone call. Even if she is just making observations and not saying it definitely is seizure activity (and she just chose to make her notes on an unfortunately named form), I tend to be very, very literal about this sort of thing. I also know that I am agitated because I am scared that what she is saying is true. It seems incomprehensible that my sunny little boy could be having seizures in front of my eyes.

I am going to sleep now, it's what I need to do.