What a nutty day. Our babysitter stayed home sick, so I scrambled to drive Sabrina to preschool and head into work and Dave took Max to get hooked up for the ambulatory EEG (they're checking for absence seizures). Max screamed bloody murder the entire time they glued the wires to his head. I don't blame him. And that cap! Can you say fashion faux pas? Good thing Max isn't dating yet. And too bad I read Cindi's suggestion yesterday to have him wear underwear over his head only after Max was en route, that would have been ever so much more fab. Next time! Tonight he fell asleep (in my bed, where else?) comfortably enough on his side, the backpack holding the monitor propping him up.
I decided to broach the topic with Sabrina.
Me: Why do you think Max is wearing that special hat?
Sabrina: "Because he's sick."
What's wrong with him?
Sabrina: "He, uh, he, uh, I don't know. Just talk about me now."
What would you like to talk about?
Sabrina: "I'm going to talk about, I'm sick and I have a runny nose. And I'm sneezing a lot."
Do you need to go to the doctor?
Sabrina: "And my nose is stuffy all the time."
Do you need to go to the doctor?
Sabrina: "No. It's almost better."
Do you want to talk more about Max?
Sabrina: "Max likes trucks and he likes to play with them and likes to line up them. I don't like Max when he hits me, only when he plays with me. Now you'll talk about something?"
OK! Let's about Max. Max needed to get a special test to make sure his brain is OK.
Sabrina: "I'm going to spell something on the computer."
safdaccvafap[popopablclws;dkdldllddwdyiiitt w we1te1tqhhekj4e
And that was that. The EEG stays on till Friday morning, then we have our appointment with the neurologist the following Friday.
Tests like this mildly unnerve me because I don't want to hear crappy news about Max's brain. When Max was a baby, our neurologist told us to look at what he was doing and not get disheartened by the brain damage in the MRI photos taken the week he was born. MRI film may look grim but it doesn't tell what a child's capabilities are—and how he can overcome the damage. Dave and I have stuck with that advice since. Dave actually found an amazing story yesterday on CNN about a woman named Michelle Mack in Falls Church, Virginia, who was born with half a brain. She has some challenges but basically talks normally, graduated high school and lives a full life. Get this: The right side of her brain rewired itself to take over functions controlled by the left, damaged side. Wow. Just, wow.
And so, the scary MRI film sits way in the back of a closet, a monster in the closet that we never let out. Of course, if Max is having any sort of seizures, we do need to know. They'll be controllable by switching medication, if worst comes to worst; the one he's on now doesn't help with absence seizures.
Now, more rock-the-vote requests: Mutual of Omaha did a tour this summer and recorded people's "aha" moments. They got 1000 stories, narrowed them down to 75 and they're picking a Top 10 based on votes. Included in those videos is Barry, who talks movingly about having a son with Down Syndrome. Voting's open till tonight to 12 a.m. Pacific Time, so jump in!
Poor Max! Actually, though you say "Good thing he isn't dating yet" he'd probably be VERY popular with the "No glove, No love" ladies--he looks like a walking ad for protection of an intimate sort! I knew someone who wore a similar costume at a Halloween party a few years back and didn't leave alone! No matter--even with the goofy hat and the understandably bad attitude, the kid is still a charmer!
ReplyDeleteAs for the brain, isn't it an amazingly plastic thing! I saw that CNN piece too at work--astounding! That ability of the brain to rewire itself is the reason why doctors who give out the "worst case scenarios" are so often completely wrong. In fact, there are children (and the odd adult) with terribly profound seizures that cannot be controlled with medications who undergo hemispherectomy (the surgeon will basically chop out half the brain to stop the seisures) and the little darlings, quite amazingly, rewire themselves. When I first heard about this operation in my forays around the net a few years back I was absolutely astounded by the concept, and couldn't fathom the absolute fortitude of parents having to make a call to put their kid under the knife for an operation of this gravity (if I can avoid "the knife," I do--I'd be a total wreck having to make that sort of choice). It certainly has to be a very tough decision for people in that situation. The operation has, near as I can tell, a fairly good success rate--but still! You've probably heard of this already, but here's a blurb on it:
http://www.webmd.com/epilepsy/functional-hemispherectomy
It's not used for treatment of absence seizures, of course, but it does demonstrate how those old ideas about the brain (that it was a static entity that could never ameliorate damage) are just so doggone wrong!
Anyway, I hope Max's EEG comes out lovely and clear, and he won't need any additional medications. I also hope poor little Princess Sabrina gets over her sniffles in plenty of time for Halloween.
Well, let me run over to your links and do a bit more voting, and then get my fat butt to bed! Hoping for the very best news for you!
I despise those caps and all those leads! We've never had the ambulatory test (though we probably should have), but a couple off EEGs and a sleep study. Not pretty. Hope it turns out ok...but either way keep your thoughts pointed toward the miracle of the brain. Max has already shown you!
ReplyDeleteI know what you mean about MRIs. I really freaked out when Jake's came back showing PVL. To me it was like a firm diagnosis of constant problems.
ReplyDeleteWe met with the pediatric developmental delay doctor after and she blew it off in a nice way. I LOVE this lady.
Her comment over and over was "don't let the MRI diagnosis him. Many kids have terrible MRIs and go on to do great things. Never underestimate the will of the child."
Each day I see how she was right. "A test is just a way to know how to treat a proble. Not a beat all end all."She is so right.
I'm sorry but that picture is just precious. I know it's very stressful for you, but he's just so cute!
ReplyDeleteCharlie's prognosis, brain damage was so completely grim that I can recall looking at it like it was yesterday. My exact thought was, "I have no idea how a person could recover from that." My philosphy has had to become "look at the child" because man oh man looking at the film is scary. Maybe you should bring that film to the pediatrician and let her keep it in his file--get that monster out of your closet.
The picture cracks me up!
ReplyDeleteGraham's last EEG was so long ago, he didn't cooperate so the results weren't valid. I didn't give a crap and never went back. He only seized for a day because he was actively bleeding in his brain, we weaned off his phenobarb and he never had an issue.
I hated hearing about his bleeds when he was on ECMO, nobody could tell us what the effect would be, all we were told was 'wait and see', and that the brain is very plastic.
I hope you get good news about this latest test!
And I hope you show his girlfriend that picture someday.
Hi Ellen. I just came across your blog. I read Max's story and am just thrilled that he's doing so well. He's adorable!
ReplyDeleteyou are such a nice mom :)
ReplyDeleteDear Ellen,
ReplyDeleteMy daughter also is about to turn 6 was born with CP as a spastic quad. The neurologists were all very upset with the MRI. Said she only had half a brain. Said she'd never walk talk, sit, stand, see or hear. Well, she can see, hear, is doing a little talking, has about 100 words, has no contractures and they don't think she ever will (thanks to 250 HBOT treatments begun at 2 months old). They said she was seizing constantly as of 2 months ago and now she's on kepra which has helped. She still cannot sit, or hold up her head, or trunk, or swallow. We have to suction her saliva out of her mouth every 5 to 15 minutes 24/7. But she's learning to read and also loves to count and add. Your news about the half brain rewired certainly gives me hope. Thanks for sharing. We don't have a blog yet becasue we've been in a complete state of crisis ever since she was born and I have so little time to write. But we do have an outdated website www.friendsofsara.com I love your blog and thanks for passing on so many helpful things. I saved my daughter's baby teeth last week and the stem cells are viable. I sent two e-mails to Duke U but got no responses. Do you know if they are still taking CP kids? I think Max is doing fantastic and you all are wonderful parents. Hope those stem cells are spinning around in him doing wonderful things.
Melissa Perry