Tag Archives: Epilepsy

It would be easier to come up with titles if I could stay on topic…

I love a good sunburn with such ridiculous lines, that most of my wardrobe will fail to hide my stupidity. But rather than take responsibility for my failure to apply sunscreen anywhere but my face, I will instead blame the organizers of the annual Miller Lite Chili Cookoff for moving it from the tree-filled shady location at Stone Mountain Park to the the black asphalt parking lots of Georgia International Horse Park in Conyers. No trees. Just asphalt. I will give them credit for a larger space that made it easier to walk around, but I’ll push people out of the way if it means the return to the sheltered haven by the park.

We like to go every year, but we missed last year–the final year at Stone Mountain–for a most hilarious reason. My mom went to the ER. Yes, I just referred to my mom going to the ER as hilarious. You read that right. Ok, it wasn’t hilarious at the time–at least not for a few hours–but it’s an interesting story. It had been a stressful few months with Connor’s time in the NICU and diagnosis, and that morning, another stressful issue (nothing to do with Connor or us) came to light. I called and talked to my mom about it that morning. About an hour and a half later, we arrived at my parent’s house to drop Connor off. This was the first time we had ever come over that my mom didn’t come out to meet us at the car (something I often like to point out she never did when it was just me coming over). When she finally came downstairs, she looked surprised to see us. “What are you doing here?” I thought she was joking. I reminded her they were babysitting while we went to the cook off. “Did I know about this?” she asked, confused.

Forgetting Connor was coming over? Yeah right. Something is weird. She usually only blocks out memories that involve me as a teenager. She looks at Connor and says, “Oh, aren’t you cute,” in a way that indicates this is some random baby mysteriously propped in a chair in her sunroom. My dad and I look at each other. Then she asks why we’re there again. And when we answer her, she clearly doesn’t remember that we just told her. She also can’t remember what she had for breakfast, where they went for breakfast or what neighbors they ran into while they were there. She’s asking the same questions over and over, and clearly isn’t forming any new memories. And me? Great. I realize when I called her that morning I gave my mom a freakin’ stroke.

So rather than downing 900 samples of chili, we head to the ER. My mom keeps asking us the same questions over and over. She’s on a repetitive loop. Then she declares, “I’ve had a stroke! Self-diagnosis for you!” She repeated that roughly 647 times by the time we reached the hospital, and thought she was figuring it out for the first time every time. Once we reached the hospital, since she wasn’t able to retain new memories, she kept thinking she just woke up there and continued asking the same questions. It was the weirdest thing because she was looping like a tape recorder. Same comments and questions, same intonations, same jokes. Blood pressure was off the charts. Scans, an MRI, and a few hours of me battling the urge to video this insanity with my phone, and they come back with an answer. No stroke. In fact, everything looks great. Diagnosis: transient global amnesia. Lasts roughly 24-hours and can be caused by a stressful event. She will completely recover, and it is unlikely to reoccur. It is also extremely rare. Yay us and our predilection for weird rare medical crap. It’s particularly weird because though you forget a big chunk of time and events, you don’t forget the basics, who you are and the basics of your life. So sadly, I was unsuccessful in convincing her she had promised to gift us $25,000 and turn over the keys to her ’66 Mustang.

So then the rest of the day could be spent repeating what was wrong with her when she would ask every three minutes. “Well that will teach you to call and give me bad news again!” I heard that 87 times before we left the hospital. At this point I was embracing the hilarity of the situation since I knew I hadn’t caused irreversible damage to my mother’s head. Regrettably, I did not record her at all. Though you can find YouTube videos of other people with this, and they pretty much sound the same. Hilarious that is. Especially hilarious, since she was going home with my dad who would have to field the questions for the next several hours. I did write a bunch of stuff down in a notebook though so my dad could tell her to read it when she looped.

Some people will do anything to get out of babysitting.

We’re pretty settled in the new house at this point. The dining room is still a mess, but pretty much everything else is in place. Chris has informed me he will not be meeting my two-month deadline to paint the entire house. He seems to think a year is more appropriate estimate for completing all the rooms. “But Becky,” as my friend Cat said, shaking her head “you stay home. Can’t you paint?” HAHAHAHAHAHAHAHAHAHA! Have you met my husband? I paint like I vacuum, it would seem. Willy nilly without leaving straight lines. I am but a hander-upper of necessary supplies.

Connor now has his very own playroom downstairs. It is chock full of fun and goodies for him, and secured so I can get stuff done. So what does he do?

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How am I supposed to get stuff done when he looks at me like that?!

Then his favorite toy, his jumperoo, finally gave out after extended use past the weight limit. It was a sad day. This is how he uses it now:

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I also decided the room I initially chose to be his was too small, so Chris got the honor of disassembling the crib again to move it. I’m delightful to live with.

Connor recently had a 30-minute EEG at his neurologist’s office, just to check in on the general state of things. Lo and behold, he actually had a seizure on it. Seizures are famous for not cooperating with EEGs, so getting one on a 30-minute test! Whoa. His neuro now believes what we have been seeing are complex-partials, pretty much what we’ve always battled, aside from infantile spasms. They are decreasing since putting him back on vigabatrin and hopefully we’ll get the just-right doses of vigabatrin and Onfi soon. He had his first ERG in quite some time on Friday. I’m not sure if he’s planning to be Miley Cyrus for Halloween or if he’s expressing his distaste for the boring peach-colored gown (where are my rockets?!).

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I’m still on my fruitless quest to get a detailed report from Boston on his MRI back in August. We have the basic results of no growth, but we’re also supposed to find out how many tubers, SENs and specific locations. So I will continue on my 9,000 phone calls quest that every person who deals with a medical issue knows so well. Why does everything have to be so hard with hospitals, pharmacies, insurance, doctors… The only doctor’s office that I feel comfortable with response time is his neurologist. But I have to play games with:

the hospital in Atlanta

now apparently the hospital in Boston (which saddens me cuz I gave them props earlier this year)

insurance

the ophthalmologist

the pediatrician

the mail order pharmacy

I hate when I like a doctor, but staff makes life hard.

My parents just adopted two kittens, and they seem even more fascinated by Connor than he is with them. And he loves kitties.

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Sunday was my birthday. A lot has happened in my 23 years. (Shut. It.) Pretty mellow affair that started with brunch with Chris and my sister-in-law Donna and dinner at my parents. It ended festively while I was in the shower that night and heard Chris yelling “Becky!” Oh my god. This is it. We’re going to the ER. Connor must be having a status seizure–something we’ve never had to deal with. I run down in my towel…nope. He vomited. Everywhere. On himself. On Chris. On the floor. On the new couch. So emergency bath time and snuggling. He was fine. Fortunately it was only once and he was perfectly fine before and after. Which makes me wonder if this is the stomach of a toddler issue or a vomit seizure. Either way, he’s great now and expending his energy on keeping me from doing vomit laundry.

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At least he’s helping spread Halloween spirit.

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If you need me, I’ll be following doctor’s order somewhere:

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My sister-in-law knows how seriously I take my health so she gave me this bracelet for my birthday:

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Happy anniversary to my parents!

Reminder:

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Informational meeting on financial planning for your special needs child this week! Wills, estate planning, a chance to ask questions, etc.

Thursday, October 10 at 7:00pm
Mount Vernon Baptist Church 850 Mt. Vernon Hwy NW Sandy Springs, GA 30327
Please RSVP to me at pin.the.map@gmail.com.

Slow Motion Changes

It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?

The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to  actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.

He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.

And the remolding helmet only needs to be worn at night now now!

Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.

Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Whoever that kids is, he is awesome!
Whoever that kids is, he is awesome!
Now that the carpet is sufficiently full of milk, I'd like to replace it.
Now that the carpet is sufficiently full of milk, I’d like to replace it.
How long do I have until mommy starts making rules about TV?
How long do I have until mommy starts making rules about TV?

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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