Friday, May 1, 2009

The Month of May Can Suck It

As I sat down to write this tonight, I realized, it is my 50th post. Cool milestone eh? Wish it were under better circumstances.

Let me get right down to it. It's the end of April tonight as I write this, but I'll be posting it tomorrow, which will be the first day of May. And allow me to be as blunt as I can...I expect May to suck giant ass.

Did you know that the month of May might have been named for the Greek goddess Maia, who was identified with the Roman era goddess of fertility, Bona Dea, whose festival was held in May?

Did you know that May is National Salad Month, National Egg Month, National Barbecue Month, National Hamburger Month, and Fungal Infection Awareness Month in the U.S.? Did you know that Harry Truman was the first president to have been born in May?

Of course Mother's Day is always in May, but did you know that in the United States, Military Spouse Day is observed on the Friday preceding Mother's Day?

My own mother was born in THAT I know you didn't know.

Gotta admit, it has always bugged me that my Mom's birthday is in May and so is Mother's Day, because it means that she gets two gifts from me in one month rather than having that spread out over two different times. Would be cooler for her I think if she got something in May, then got something again another month other than Christmas, know what I mean?

So as we enter the glorious month of May, Bennett is still seizing away. Despite the fact that we are on a HEAVY dose of Topamax and getting to a heavy does of Keppra. Why is he even ON this shit if it isn't working? Why can't anybody tell me when it is supposed to work if it is actually GOING to work? Why is it so freaking hard to get in touch with anybody from the Hospital he is receiving his treatment from?

And the seizures have been changing. He used to always, without fail, have them like this...Get sleepy, lay down for a nap/night-sleep, then fall asleep, then wake up 5-10 minutes in, have a cluster of seizures, anywhere between 12-100, then fall back to sleep and have his nap or sleep through the night.

Now, as of this past week, the seizure activity can start without him even being asleep or nodding off. One night this week he had them in the bathtub during a bath while he was giggling and playing and did not appear tired at all. Another evening he was playing, standing at his little musical center, I noticed him jerk for a second, then yup, sure enough, had a cluster of seizures. (EDIT: As of this morning, first time ever, had them when he woke up in the morning, a small set in bed with Jen...never happened before.)

For a while he had stopped doing the 'I'm irritated as shit' sounds he used to make during the seizures. Those have come back some of the time, while others he can still possibly giggle during his space between each seizure. And while the anti-convulsants seem to have affected his arms going outward as much, holy SHIT sometimes his head jerks downward so suddenly and so severely that one time I picked him up to move him and felt the force of it on my was intense. Gotta be doing a number on his neck muscles and joints.

I used to have the seizure style classified by type in my recording of the data. Nutshelling it...'Type A' was the full jerking head arms flying out, 'Type B' was a sort of milder head nod and 'Type C' was a type where he just would not be there, a staring episode with stare/look around then stare/look around. I haven't seen a C in a long while, and now I would say that almost every set of clusters is an A/B's pretty consistent that way now.

So why is May going to suck?

We made an appointment with a Dr. Chugani in Detroit for the 3rd, 4th and 5th of June. That was the soonest we could get in to do a bunch of tests and get a second opinion about Bennett by someone who is considered world renowned as far as knowledge of the condition. But since that time, it seems like the team here has sort of stopped being involved in continuing to treat Bennett.

That may not be true, just might be my 'parental perception', but it just seems that way. Especially since not a single thing that was supposed to happen in May with the local group (an ophthalmology appointment, an EEG, a meeting with a new Epileptologist, any follow up appointments or even checking in) appears to still be happening. That, coupled with some work-related nightmares, my own anxiety issues, and an increase in allergy-related crap that this time of year always brings I get the impression that May is going to be a very, very difficult month.

So bring it on bitch. Not like I haven't been waiting for you. Knew you were coming. Can't say I'm thrilled about it, but you might as well start kicking me in the ass and slapping me in the face and kneeing me in the balls and get it over with. I'll survive you, I'm certain of it, and you'll smack me around pretty good I'm sure but I'll get some shots of my own in on your sorry ass so we might as well just get this whole thing started as soon as I wake up in the morning.

I'll be waiting for you.


  1. You said it for me! I've been dreading May for months's our 1 yr diagnosis mark. A time that I never thought we would approach still having seizures.

    About the head nods...Austin's slammed me in the face, busted his lip and bit his cheek on my shoulder from picking him up before. I've had to adapt to a new way of picking him up and positions I hold him. It sucks because I'd love to have that face to face interaction's just another thing this disorder has robbed from us.

  2. My Mom was born in May too. And so was my sister, brother-in-law, my brother, my neice, and 50% of the girls I've been in serious relationships with. May is also known as "I'm broke" month.

  3. This all just stinks/sucks/blows/bites a big one I tell ya! We go to see our 5th neuro. this coming Monday. We have gotten to the point that we automatically assume they won't be able to tell us anything so if they actually pull something out of their behinds, then we are pleasantly surprised. Awesome that you have an appointment with Chugani! He may be our next stop, although everybody keeps swearing up & down that Connor isn't surgical. As far as your local group, it may be time to start ruffling some feathers & raising some cane. Unfortunately I have found the only way to get any respnse back from these "so called professionals" is to show my a##. Let them know you are not one to mess with. We too really have to be careful with Connor's seizures. he has head butted me numerous times. So, if someone is holding him and he starts to stare we tell them to turn him the opposite direction. Because it defintely hurts!

  4. Hey,

    I saw your blog through Danielle's and I've been following for a few weeks now. My son has IS also, but we are further down the road. He is 2, will be 3 in October. He's doing good developmentally, although we haven't gotten complete seizure control. We did go to see Chugani, and I gotta tell you, the man is a fucking genius. Regardless of what he tells you, you can be confident that he is giving you solid information. Good luck getting through May, who knows, maybe it won't be as bad as you thought it would be.


    BTW-My Mom writes a caringbridge page for KC, if you want to check it out.

    The blog that I signed your page under hasn't been updated in a while, but it has some good info about vaccine safety if you are interested.

  5. Hey Ken, I haven't been posting much on the board, because it seems I'm spending more time at the hospital than I am at home.

    But I wanted to let you know that I'm still reading your blog.

    They say misery loves company, and you have it, but I bet with both like not to have any misery company at the moment. For me too May is going to be a suck ass month, but in my case I'm the one getting all the tests.

    If your local doctors aren't doing much, let's hope the specialist nails it on the first try and is able to find the best course of treatment for Bennett, be it medication, of surgery. No one likes surgery, but sometimes it's the best option. In my case, to be honest, I wish they find something to cut out already and end the crap I'm living through.

    Best wishes, keep up the Nespresso, but use decaf.

    Also your mother was a knockout on that photo.

  6. p.s. I'll hold May while you punch him.

  7. The darkest hour is just before the dawn.


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