Tag Archives: Epilepsy

Self Prescribing Some Wine for my Whine

My frustration and irritation level is way up this week. We’ve been looking at the possibility of reducing the price on our home since we’re getting so many looks, including three second looks, but no offers. Then we got the heads up that another jerk in the neighborhood is going on the market this weekend priced almost $10,000 less and with a bonus room we don’t have. So we preemptively dropped the price and are hoping for a miracle before they hit the market. And unlike the other house that went on the market in our neighborhood that is under contract despite rotten wood and a lousy yard, this one actually has great curb appeal. Oh, please let it be a brass-infested wonderland inside. And if they go under contract first and accept an offer below a certain price point, we’re screwed and stuck where we are.

We had some people view the house yesterday that reportedly loved it. Except they have a second child on the way and they want more room. I’m not real clear on why they looked at all. Stop getting my hopes up, people!

Then, to top every thing off, Connor’s neurologist called yesterday with the results of his EEG. The stupid tuber in his left occipital lobe is acting up again. It has put out spikes before, but apparently Connor is having subclinical seizures again. Those are seizures that have no outward appearance, but show up on EEG. The tuber he had removed when he was four months old was causing him to have a couple subclinicals an hour, plus a handful of clinical (ones we could see) a day. We haven’t seen any on EEG since then. Yay. Here we go again. He assured me that this was nothing like when Connor was born but he did see more than one in the eight hours. Mother F. When we started him on Trileptal, we upped the dose once per directions, but never upped the second time — per directions — since we weren’t really seeing anything anymore. So now we are upping and will have another EEG once Connor is totally off the vigabatrin.

I’m just really baffled by the whole concept of a subclinical seizure. I know what the technical definition is; I just don’t get how it affects him. Yes, I understand it’s not good to have funky brain activity, but if he shows no outward signs, how is it affecting him? Like, if I had one right now, what would it do? Does he feel something we can’t see? Connor is happy and progressing, but would he be progressing faster without them? Maybe. Or would it even matter because so many factors go into delaying a TSC kid? If by some crazy chance, someone with epilepsy reads this and has subclinicals on their EEG, if you could enlighten me to your experience…

UnknownSpeaking of progression, here is an area where he is fighting us tooth and nail. The bottle. I cannot get that kid off the nipple. He doesn’t care what style or shape the cup is  — he’d probably even drink out of Flavor Flav’s chalice — it just better have a nipple on top. The hard plastic sippy cups inspire instant anger and hurling of the container, so we tried the sippy cups that are interchangeable with his bottle. We can either have the sippy cup mouthpiece or the regular nipple. He hates this sippy cup mouthpiece a little less because it’s pliable like a nipple, but other than sticking it in his mouth a few times, he just plays with his bottle. His speech therapist gave us some things to try, but thus far, no luck. Maybe his college roommate will shame him away from it.

I mean, how much difference can there be?!
I mean, how much difference can there be?!

I leave you with a montage of Connor’s funky sleeping positions. Apparently some people have to plan their whole day around their kid’s naps. Not me!

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When you put electrodes on my head, can you see how annoying I think you are?

“Oh good. I get a day off from having crap on my head so that I can have crap on my head.”

Connor doesn’t talk, but I imagine that’s what he would have said yesterday if he could. A whole day without his cranial remolding helmet, but he ends up with electrodes and gauze everywhere. And you might think, oh, poor Mixed Up Mommy. Having to spend eight straight hours in a doctor’s office while Connor has an EEG. Actually, I’m pretty sure nobody is thinking that, but that’s okay. As long as it doesn’t involve a check-in at Scottish Rite, I’m fine.

What? No helmet today? Sweet!
What? No helmet today? Sweet!
Oh. You weren't real clear, Mommy. Thanks for nothing.
Oh. You weren’t real clear, Mommy. Thanks for nothing.

This EEG was a little more challenging now that he is mobile. There was a lot of rolling, tangling and attempts to play with cords. But considering only one electrode ever fully came off his head, and I was able to reattach it, I consider it a victory. We read some books, played, I worked on an article and we took a long nap together on his jungle mat.

The EEG was just a check-in to see how things are going since we are starting to wean him off the vigabatrin. His spasms have been controlled since last September, so we’re hoping there’s no more need. We introduced Trileptal a couple weeks ago to see if that, along with the Keppra, will knock out the complex-partials he’s been having. It seems to be helping as they have become fewer and farther between. He had none yesterday, naturally. Overall, he’s doing well in the seizure department. Even though he’s not totally free, the few he does have are 10-20 seconds of pursed lips and staring and he snaps right out of them. I think the EEG will look as normal as it can — meaning his EEG will probably never truly come back normal due to the tubers, but that’s okay as long as nothing is going on that negatively affects him.

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Aren't you going to share your Dunkin' Donuts, Mommy?
Aren’t you going to share your Dunkin’ Donuts, Mommy?

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So sweet to share your chicken noodle with the EEG machine.
So sweet to share your chicken noodle with the EEG machine.

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That's cute that you big people think you can keep my head wrapped in gauze for an entire day.
That’s cute that you big people think you can keep my head wrapped in gauze for an entire day.

Fighting for My Child

Day 14 of Guest Blogging for TSC Awareness Month 

By guest blogger Jessica Sharon  (Virginia Beach, Virginia)

I will never forget that day in November three years ago when my son Joey was diagnosed with tuberous sclerosis at the age of 7. At times it seems like it was only yesterday, and at other times it seems like it was forever go.

I went to wake him up for school like any ordinary day only to find he wasn’t responding to my voice, which was often typical being that he was NOT a morning person; only to roll him over and discover his eyes were rolled back in his head and he began convulsing. My initial thought at first was that he was playing a joke on me as children often do and being silly, but I very quickly realized that was not the case. It was the longest 30 seconds of my life and it seemed to go on forever. When he tried to get out of bed and walk, he immediately fell to the floor and had no feeling in his arms or legs. He began to cry in fear that he couldn’t walk and had to crawl to get around. I called 911 because I had no idea what to do or what was wrong with him. After all, he was a normal healthy child and had never had any health concerns before.

After admission to CHKD (Children’s Hospital of the Kings Daughters) in Norfolk, Virginia and numerous neurological tests, it was determined that he had TSC with lesions on his brain and heart. Thankfully, over time, the spots on his heart just went away, but spots had formed on his kidneys. I had never heard of this disorder before and had so many questions and concerns.

Fast forward three years to May of 2013. He is still averaging 3-4 absence seizures a week while on five epilepsy medications. We have tried just about every epilepsy medication out there to no avail. I always thought the seizures would be the worst of it all, but honestly, it’s the learning disabilities, mood changes, and just the overall change in his personality that has affected him and our family the most. He doesn’t want to be involved in any sports or activities that put him in a position to be surrounded by people with the possibility of a seizure occurring. It was such a struggle and an upward battle to get him an IEP within his school. As parents you truly must fight for them and be their biggest advocate because no one else will. He needed one desperately because his confidence was very low. He never felt smart, and he just struggled every day within the classroom; he is so bright and intelligent, but all the medications just seem to suppress much of that. He will be undergoing resection surgery in June at VCU medical center in Richmond to remove the cyst they confidently believe is causing the seizure activity. There is no guarantee that this will be the end of seizures for him, but as his mother, all I can do is give him the best chance at normalcy and a life free of seizures. After all, isn’t that what all of us want for our children, for them to be happy and healthy?

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Purple and red go together like Bert and Ernie.

“Bert + Ernie for Marriage Equality” / Toy Sto...
“Bert + Ernie for Marriage Equality” / Toy Story / SML.20130327.IdealHusbands.Remix (Photo credit: See-ming Lee 李思明 SML)

IMG_3121Connor does not own a stitch of purple and Chris wasn’t on board with me dying his hair purple to match mine, so I recruited friends and family to wear purple on his behalf yesterday  for Purple Day and epilepsy awareness. Connor has epilepsy due to his brain tubers from TSC. That being said, we have not seen any seizure activity since Feb. 10.We didn’t do too shabby considering we were in stiff competition with the sea of red washing over Facebook due to the Supreme Court hearings on gay marriage. It was bad timing for me as red is definitely my color and I have a ton of it. But since that is a two-day affair, today I got to discover that my still purple hair goes great with a red top. Politics, schmolitics. I’m in it for the fashion. And who knows. Maybe someday, people will figure out that you can’t claim to have Jesus in your heart, and in the same breath, call someone a fag and condemn them to hell.

My mom rocking the layered purple look.
My mom rocking the layered purple look.
Arianna strikes a pose in a very fashionable ensemble.
Arianna strikes a pose in a very fashionable ensemble.
Giovana took her purple to the court house (where she's an interpreter, not a criminal).
Giovana took her purple to the court house (where she’s an interpreter, not a criminal).
Mieka represented in Canada.
Mieka represented in Canada.
Sara claimed she was having a bad face day, but she's never needed an excuse to send me a picture of her chest.
Sara claimed she was having a bad face day, but she’s never before needed an excuse to send me a picture of her chest.
Asma doesn't believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Asma doesn’t believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Sondra and Jareyl rocked some mother/son purple.
Sondra and Jareyl rocked some mother/son purple.
Rachel doesn't do purple clothes, but she does purple flowers.
Rachel doesn’t do purple clothes, but she does purple flowers.
Claudia, Isabella and Arianna made it a family affair.
Claudia, Isabella and Arianna made it a family affair.
Juliette was stopping traffic in her purple...oh my god, my captions are so stupid and yearbooky.
Juliette was stopping traffic in her purple…oh my god, my captions are so stupid and yearbooky.
Yuri only allowed her art students to use purple crayons all day. Right?
Yuri only allowed her art students to use purple crayons all day. Right?
Thomas knows the importance of accessorizing.
Thomas knows the importance of accessorizing.
Sleepy is modeling his human sister's former onesie.
Sleepy is modeling his human sister’s former onesie.
Lili represented in Barcelona, Spain.
Lili represented in Barcelona, Spain.
Danita took her purple to the bank. No really. That's where she works.
Danita took her purple to the bank. No really. That’s where she works.
Ann went to sleep dreaming of purple sheep.
Ann went to sleep dreaming of purple sheep.

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