Monday, February 18, 2013

My Newest Medical Specialty

So, I've spent the past week reading obsessively about epilepsy and seizures, because I am pretty sure at this point that's going to be the newest diagnosis for my poor boy. The tests of the coming two weeks should tell for sure.

At this point I have so many medical specialties under my belt they should just admit me straight into the residency of my choice, without bothering with actual med school coursework. Who needs that?

Doctors LOVE me. I speak their language, man.

Do I want to be a psychiatrist? Neurologist? (I know just how to do those goofy neuro exams, having had them myself and watched my two kids have them innumerable times.) Developmental pediatrician? Rheumatologist? Dermatology, orthopaedics and urology, although I have logged some hours there as well, I'm a little less informed about so we'll count them out.

But hey, who has time for work when you spend most of your waking hours in all of the above specialists' offices, or talking to them on the phone, or researching the symptoms they treat, or triaging your kids? Or in the damn ER?

So close to being riiiich, and yet so far. (Apologies to my doctor friends, who know I am stereotyping just a bit, right here.)

Anyway, we've seen the petit mal seizures, and so have others. The cognitive losses, the confusion and disorientation. The incontinence. I read that some children can have 100 of these "absence" seizures a day. Can you imagine that? Losing consciousness 100 times during the school day, and your teacher thinks you are not paying attention? Ah ha! Maybe That's why Benjy has not learned much in school since -- forever. And why school is a HUGE source of anxiety -- even the "Joy School" he now attends. Makes sense to me -- although on the other hand, I really think this is a relatively new development.

Last night while he slept I was fretting about him, so I decided to sneak into his room and watch him sleep. What I saw made me very sad.

His sleep is incredibly disturbed. Lots of movement. Head raised, eyes opened, head lowered, again and again. Efforts to breathe through his chronically congested nose (he refuses any kind of nose spray so he's out of luck on that one). I went and sat down on the edge of his bed. He half-woke.

"Mom? Dad?"

"It's me, honey.Can't you sleep?"


"Then come into my bed."

I have not done this in a long time. But I needed to be near him while he slept, to see what happens all night. Even if it meant I would be up\ all night. I needed the data, for his doctor and for my own information.

I told Lars he would be spending the night in Benjy's bed. He looked mournful but agreed. Good idea.

For the first hour, I kept my hand lightly on Ben's back. Again and again I felt his body twitch. Saw him raise his head and open his eyes a couple of times. After a while his body quieted and so did mine; I fell asleep. What woke me early this morning was his leg, or legs, twitching and kicking.

My poor child is not even granted the reprieve of a peaceful sleep. He is not granted a reprieve ever.

And I had the audacity to complain  a few days ago about wanting my two-months respite.

I got up pretty early this morning (I always do these days, because I am too anxious to go back to sleep after I get up at six to pee) and after trolling Facebook for a while I started Googling.

I've got my usual reputable sources. WebMD. The Mayo Clinic. Children's Hospital Boston. There are a lot of good resources out there if you know how to parse them. As an honorary medical resident, I mostly do.

And I have concluded that Benjy was seizing last night. They say the person wakes with a headache and dizziness. I will have to ask about that. He's never complained about those symptoms before, but sometimes I have to ask. And sometimes he is not a reliable reporter anyway.

I wish the next two weeks were over. Not only do I want a firm Dx so we can move forward with treatment, I want to know WHY this is happening. Idiopathic seizures have no known cause, except that they are usually hereditary. I do not know of anyone in our joint families who has epilepsy...but then again, Lars's family doesn't really talk about stuff like that (or communicate with each other well at all). So maybe they do carry that genetic predisposition.

If they don't, then what is it? A tumor? A hemorrhage? Aneurysm? Degenerative disease? Inflammatory process?

I know what you are thinking: Whoa, Anna! You are jumping the gun. And you are absolutely right. Chances are the MRI on Wednesday will reveal no structural issues. And then we will have to begin the laborious (I assume) process of figuring things out.

That's OK. I just want my dream to come true. My dream that the Benjy we used to know will come back to us. Maybe even healthier than ever. That I'll resume my education in things arcane and wonderful, courtesy of my young scholar.

That he will once again ask me to explain Marxism to him, and then ask me if we can have more talks about politics. That he will recover his strongly-held opinions about the price of gasoline. That he will know every species of bird and the names and the creatures of every pre-historic period, and which military helicopters were used in Vietnam and which in WWII, and whether the Panzer or the Sherman was a better tank and why.

Maybe he still knows some of that stuff but he has no desire to talk about it.

Boy oh boy, does that hurt..


  1. I can't remember -- is he scheduled for a sleep study soon? It seems like they should be all over that. And if he's not getting any decent sleep, no wonder his mental state has been poor. It must be awful to have watched him like that. :(

    1. He did have a sleep study in January, and then the outfit promptly went bankrupt. So when we desperately need those records they could not be obtained. Argh! That's why it took so long to get the damned MRI. But anesthesia went very smoothly yesterday. And something certainly is going on with his sleep. I assume we will get to the bottom of it,and I'll be sure to post when we find out. :)

  2. As always, thinking of Benjy. Just remember these words (of wisdom?) many friends and professionals have told me: "Nothing good ever comes of Googling symptoms/treatments". Only more worry and anxiety. Hugs to you all.

    1. Very sage wisdom. Thanks for being here for us, L. And are YOU ok?? Hoping beyond hope. xx

  3. My son is about your child’s age, and what you just described is a normal night’s sleep for him. Children tend to thrash in their sleep; they do not lie still in some vampiric death trance. My son grunts, squeaks, snorts, mutters, laughs, twitches, and squirms, and even sometimes creepily lies there with his eyes half-open while completely unconscious. By the time he was five years old, he kicked hard enough in his sleep to launch his 6’2”, 200 lb. father out of bed and onto the floor. I’ve shared a bed with my son, and I’d be safer napping in the middle of a back room cage fight. He is a perfectly happy, healthy child and his sleep state can resemble a crack-addled chicken flailing desperately to get out of its shell before it misses the Studio 54 memorial disco party.
    Kids only grow while they are sleeping and growing pains could also go a long way towards explaining these nocturnal behaviors. Your son’s congestion, which can be remedied, could be more of an issue than anything else, if he is actually not getting a good night’s sleep. I worry that you’re squinting and seeing zebras when what is in front of you is just a horse. It’s not good for either of you for you to see your son as sicker than he actually is.

    1. Thanks, anothermother! As always, a good dose of perspective is appreciated. What you say makes a lot of sense -- and totally cracked me up, so thanks for that, too! I could always use a good laugh.;) The only difference between your son and Benjy may be Benjy's other alarming (and far from normal) symptoms. That's what's got me so spooked (and maybe my natural tendency to worry too much, as well). I hear you about the zebras and the horse, though. I hopehopehope you are right -- that would be awesome! (and as you say, better for us all, both in the long run and the short term.) Thanks so much for dropping by, and I hope you come back soon!