November 9, 2010

>> Tuesday, November 9, 2010

I pulled out the infamous yellow form from Bug's backpack this morning. And it appears it wasn't an Absence seizure but an actual Tonic. It read that it was less than 30 seconds and he was rigid. Sounds like a Tonic Seizure to me.

And now I am worried that he is back in Status.

Other Mom's worry about their kids being sick, having a cough, a runny nose. These things are minor to me. Do they have the potential to be serious? Yes, will they usually be serious? No. The ick will run it's course and the child will be skipping and watching TV soon enough, maybe eating books again in a few days. But with Bug, he seizes during the day and I worry that he is in Status again. That his brain is misfiring A LOT, and that can be severely damaging.

What I need is an at home EEG monitor. And medication. For him AND me.


November 8, 2010

>> Monday, November 8, 2010

One T/C last night and one Absence today while I was visiting the school. He is getting sick or is sick and fighting it off, so he is VERY tired. The Absence doesn't surprise me because he can barely keep his eyes open when things are calm. The little man impresses much as he frustrates me. Love him to pieces.


Sunday, November 7, 2010

>> Sunday, November 7, 2010

Been a good couple of days for the little monkey boy. He DID have an Absence Seizure while at the Artilpesy Opening Friday night but he was tired and a little passed his medication schedule (I gave it to him an hour before). But other than that he has been sleeping and playing peacefully.

We SHOULD be getting an appointment with the Head of Pediatric Neurology at Primary Children's Hospital. Glenn and I listened to his presentation at the EAU Conference and were very impressed. I don't say that lightly, but we were. I turned to Glenn mid-presentation and told him: I'll get an appointment Monday. Turns out, after talking with the Doc that we were supposed to meet with him Friday but no one called to confirm so we didn't know. He said he would get someone to get us in ASAP. I was stunned. He was a VERY nice man. Still...a Doctor so I have my suspicions. I can say that...people hate Tech Support people even though they are calling THEM for help. Same thing, different letter's after the name.


day just got worse

>> Tuesday, November 2, 2010

It happens. People with Epilepsy suddenly just die. No known reason. Something just shuts off and does not come back on. It's tough to hear. It's even worse to live with. And I DO live with it. We DO face the fact that every night he might not wake up. Every damn day. Every day I listen to him breathe and wait for him to hold his breath. Several times a night I wake up and feel his chest. Glenn does it too. It's our routine.

Today it's not a routine. Today is a very hard day for me. I have read about two people today that died suddenly. They had seizures. Today I am paralyzed with sorrow and fear. I do not get this way often. But I see all these people talking about what they are doing for The Holidays and 'Be sure to vote, it's important!" and I just want to scream: My boy could be dying! I don't give a shit where you spend the holidays, I don't care if you spend it with my boy if you don't. And I don't care that you voted against your party. I just don't.

I want to take my boy to Disney World and I want to spin him on rides until he can't spin anymore. I want to let him jump on a trampoline and ride a bike. And I want to see him grow into a man. And there are no Christmas Trees or any Politician that will change that for me, for us. I want him to be happy, which he is, and I want him to be happy for decades to come, which he probably will be, and I want him to find a girlfriend and fall in love. That's a crap shoot. And why is it? I don't know. It just is. How about living with THAT?

I am sorry if you don't want to think about it. I am sorry if you don't want to see Bug, for what could be the last time, and I am sorry that I am a downer but I deserve it. I really do. There is a quiet stress that I live with and sometimes I am not quiet about it, but, by god, I do a fine job of not dragging everyone I know into my misery when I am miserable. But am miserable and leave me alone. VERY alone. I need to cry until I am done crying and not a moment before. Not that it matters. I don't think I have ever had ANYONE to cry with. Life is ugly and most people don't have the guts to let the ugly be what it is. They ignore it. Well, I am ugly today because life has a way of making even the most positive person, lose it every so often. Yep, I am ugly with grief that, hopefully, will never be realized in this house. Not if I can help it. But first, I will be done with my cry.



He might have had two last night. MIGHT have. He moaned for a few seconds the first time but by the time I crawled over there he was back asleep. The second one was definitely a seizure.

I swear that it wasn't a coincidence that he went so long with no seizures...I KNOW that his Doctors are missing something. Missing because they are treating the SYMPTOMS, which are the seizures and NOT looking for a CAUSE.

I have learned that when your computer screen goes completely black, it might NOT be a bad screen. It could be a bad power connector, it could be a bad driver, it could be a conflict with another device, but you should at least try to figure out if the whole screen is broken or not before you stop searching for the cause and throw it out. It's a simple analogy but it works.

If Doctors looked at the person really and truly as a whole and didn't get bogged down by one or two of the self reported symptoms then they would be better troubleshooters. And that actually is all they are, but most of them suck at it if it's not cut and dry.

With Bug, his Doc hasn't even tried really. *I* have. *I* gave him the list of meds I wanted to try, *I* got him into Genetics before the 12 month wait, *I* got him hearing, actually hearing well again by NOT listening to his Neuro and calling an ENT. All those things, his Doctor was NOT going to do. When Bug's first set of Genetics came back with normal anomalies, his Doctor REFUSED to do anymore. So, no Dravet, no West's, no Angelman's(which would be a shock since he has almost no symptoms of that one) no Rhett. NOTHING else. Lazy, arrogant, bastard.

Where's my coke?


Spoke too soon

>> Monday, November 1, 2010

Bug came home from school exhausted, so he took a nap. About 20 minutes in, he had a seizure. Damn, damn, damn. Still not a bad run and a far cry better than 6 or 20 a day.


Must have been..

A good sleepy period. In 9 days he has only had ONE...1...that's ONE seizure. PLEASE let this be a sign of things to come.

Dare I hope?

Yes. I do.


What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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