Tag Archives: subclinical

A night in the hospital.

There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last Georgia legislative session. A couple months after HB 885 failed to pass — thanks to political gameplay, not lack of support — Sheryl took Trinity to Colorado to treat her. They were one of the families I shared about in this post. But sadly, Trinity passed away September 5. She was only 11. I was honored that Sheryl asked me to write the story to go in the children’s book she wanted to pass out at the celebration.

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Connor’s seizure activity has been up and down. We really don’t see much activity in his waking hours, with the exception of little myoclonic jerks of his arms or sometimes his head. But all his complex-partial and tonic-clonic seizures are sleep related, so those happen during naps or at night. He’s also had a couple strange incidents in which he was not having obvious seizure activity, but he was weak and lethargic as though he had. Sometimes that has lasted several hours which concerned us. On Friday he was like that all day. Sometimes he’d start to perk up, only to decline again. He couldn’t sit on his own or even support his head. I slept with him on Friday to keep an eye on him. By midnight he was raring to go and things looked promising. Saturday morning he wasn’t quite as perky, but he did eat breakfast well (the day before he had no interest in drinking and eating) and was laughing so we thought it would turn out to be a normal day. Chris’ parents were in town and we all  had plans to go to the North Georgia State Fair. This is how the day started:

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As you can see, Connor looks less than enthralled. The one ride I took him on I had to hold his head to keep him from slumping over. We had never had two days of this before and all I could think was that there was some subclinical seizure activity going on (for those who don’t live in the world of epilepsy, that means seizures that appear on EEG but don’t cause visible activity). We called his neurologist’s office and his actual neuro also happened to be the one on call–which makes life soooooo much easier–right, TSC families?! When I told him he wasn’t really eating or drinking, he advised us to go to the ER. We were hesitant. believe it or not. That probably sounds crazy to those outside this life, but as most of us who have been dealing with this stuff for a while know, you start to realize how little can really be done at the ER. You’ll find many special needs families that have the attitude of “what can you do at the hospital that I can’t do at home?” (Besides infect me with MRSA).  I mean if he was in a status seizure, or had something life threatening going on, that’s obviously ER territory, but this? We weren’t real confident. But it had been going on so long, we followed the advice. This is how the weekend ended up:

Getting fluids in the ER.
Getting fluids in the ER.
This bandaid is AMAZING!
This bandaid is AMAZING!
Typical man.
Typical man.
Perking up!
Perking up!
Doc says it's time to roll out! (to tune of Ludacris)
Doc says it’s time to roll out! (to tune of Ludacris)

They ran all the standard blood and urine tests (Connor chose not to pee for hours so when he did fill the bag there was no way to get it off without spreading the golden warmth everywhere). He was also hooked up to a keto-friendly (he’s on MAD) saline drip. Tests all came back normal. But when he didn’t really perk up after the saline, our neuro told the ER doctor not to send us home. This is where things got hairy. The ER doctor told us we were being admitted because of possible subclinical activity. So guess what we thought? How does one find out about subclinical activity? WITH AN EEG!!! I went home to pack a bag while Chris stayed with Connor. I was on my way back when I got the text. We were admitted , but they don’t do EEGs on the weekends. The rest of my texts to Chris were 90 percent F-bombs. The. Monopoly. Children’s. Healthcare. System. In. Georgia. Doesn’t. Do. Emergency. EEGs. On. Weekends. I was well aware that they didn’t schedule routine EEGS on the weekend, but…but…but… (And I later found out this happened to another TSC family who went in with INFANTILE SPASMS on a weekend).  This is inexcusable. Utterly inexcusable. But I’ve never been quiet about how I feel about Children’s Healthcare of Atlanta at Scottish Rite (or CHOA in general). So we spent the night with Connor hooked to an IV to keep him hydrated. He did start to perk up late that evening and was much better the next day so we were discharged. I was happy to have him get the IV until he would eat and drink again and I totally understand why he was admitted. When we talked to Connor’s neuro, he said that was the reason he asked for us to be admitted, and that’s fine. The ER doc was either confused or we misunderstood the implication about the EEG, I guess.

But that doesn’t change my thoughts on the matter. There is no excuse that someone can’t get an EEG on the weekend for an emergency situation. I understand that hospitals aren’t as heavily staffed at that time, but this is not okay. So if a child has a seizure for the first time ever on a Friday night, you are crap out of luck until Monday? If a child presents with infantile spasms on a Saturday morning, too bad? We can’t confirm until Monday even though IS requires immediate treatment? I’m just at a loss.

I do want to say that other than that, the stay itself was probably the best one we’ve had. Attentive and proactive nurses and the attending doctor on the floor was fantastic, a far cry from the time he got EEG glue in his eye and I had to demand something be done for 17 hours before anyone would look at him. By then his eye was swollen shut and he was in terrific pain and requiring antibiotics. It also made me feel better about the fact that it took 16 hours to get paper towels brought to the room and that the urine sample that was spilled never got mopped or sanitized (there went our four paper towels that were left in the room). Requests were definitely made by our nurse and techs for those things to happen, but whoever was on the other end of the line has a sweet job because they never bothered to do it.

On an amusing note, the pharmacy didn’t have his meds on hand (a specialty one they never have, and the other they didn’t have in the right form) so we were asked to turn over our meds to be dispensed by the pharmacy. (Wonder what that will look like on the bill?) They have to keep his Onfi under lock and key because it’s a controlled substance. His Klonopin is too, but I didn’t turn that over since it’s just for clusters. It’s funny to think he’s prescribed two meds with more street value than the medical marijuana the law prohibits me from having.

Rosie the dog and Connor had an exciting couple of weeks. My parents went to Italy so we had their batsh** crazy full-grown kittens for two weeks. Rosie is in love with Thatcher the black cat. Followed her adoringly and stalkerish the whole time. She also enjoyed chasing Theo, who spent a good portion of the past two weeks hissing at everyone. One of them broke a wine glass. They were allowed to live only because my wine wasn’t in it.

I awoke one morning with four cats in my room looking at me. It was an eerie glimpse into the life of a cat lady, a possible calling I chose to ignore. I emailed my mom to tell her of the terrifying experience and she responded by offering to bring these back from Italy for me:

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Random note: Connor and I made the local news. Check it out here.

I leave you with photos of our zoo. Our two cats are not present in the photos as they opted not to set foot outside our bedroom for the duration of this social experiment.

My mom bought them a cat tent for the stay should they become too unruly during the stay...Connor took a liking to it--more than the tent we actually bought him to play with.
My mom bought them a cat tent for the stay should they become too unruly…Connor took a liking to it–more than the tent we actually bought him to play with.
I'm like a cat. I wanna sit in laps.
Me, me! I’m like a cat! I wanna sit in laps!
Might as well taste the goods.
Might as well taste the goods.
Rapunzel....Rapunzel...
Rapunzel….Rapunzel…
Neighborhood Watch
Neighborhood Watch
Wanna play?
Wanna play?
Where are you going?!
Where are you going?!
Naptime.
Naptime.
I don't know what they were doing, but somehow they collapsed the tent down on themselves.
I don’t know what they were doing, but somehow they collapsed the tent down on themselves.
What goes around, comes around.
What goes around, comes around.








 

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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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The NICU

Right after birth.

It turns out that if you spend 9 months growing a baby with Oreos (along with the requisite veggies, fruits and grains of course!), even if you significantly reduce your Oreo intake for the following 6 months, you will not be able to then jump on an elliptical and resume your previous 45 minute routine. In fact, after 4 minutes, you will probably have a near death experience. Just a random observation for today.

Soooo picking up from yesterday, the seizures began around 5 or 6. We hadn’t seen him for several hours because of both the regular newborn checkup and the cardiac one. It was actually reaching a point of, “Where is my baby?” frustration. And let me say, care at Northside Hospital is excellent. Communication between floors and departments…not so much. When we started trying to locate him, nobody could find him. We were told to call this nursery, then that and he’d always already been moved. I was told to ask my nurse.  She didn’t know either. This went on for a bit, and then I heard it. Chris was downstairs trying unsuccessfully to locate him as the alarm went off alerting the floor that a baby had been taken past the boundaries. Chris couldn’t get the elevator because they were on lockdown, and then he heard a security guard mumbling into a walkie talkie, saying something that certainly alluded to a baby being missing. This was the last straw that lead to Chris’s very loud and public demand to know where Connor was. And this is when they located him and informed us of the seizures. (The alarm was a staff member accidentally passing the boundary and would happen a couple more times while we were there. No missing babies!)

I wish I had written about this at the time because the emotions are hard to recapture 6 months later. But I could barely talk out loud about it for a couple months. But as scary as it was, we were still in the mindset of, okay, they’ll get these meds going and he’ll be home in a few more days. Well, a few more days stretched into 5 long weeks as the seizures were incredibly resistant to the medication, a hallmark of TSC. He started on phenabarbitol, then Keppra was added, and by the time he left he was on Dilantin as well. But he was still having an extraordinary number of seizures a day. At least 80 a day, maybe more. Many of them were subclinical which means only an EEG can detect it. They don’t cause the outward jerking. At this point it looked like we were gonna have to go on the surgery, so he was transferred across the street to Scottish Rite. I could have carried him over, yet it involved a $1500 ambulance transfer. Thank God for insurance.

I can’t believe there was a time when it was taxing to feed him 2 ounces (due to medication induced sleepiness) considering he’s now 6 months old and wearing 12-18 month clothing.

We met with his potential surgeon Dr. Chern at Scottish Rite. At this point we were finally miraculously seeing some improvement with the meds. He was still having a number of seizures, mostly subclinical, but it was decided that the benefits of waiting to do the surgery when he was bigger outweighed the cons. It would be safer in a few months. So after 5 weeks of driving to the hospital every day, he was finally released on April 23, 2012. And I have to say my husband got me through this. He was a rock. He had his moments, but I would have lost my mind without him. Just the simple fact of having a sick child is scary enough, but on top of that it shattered that “it can’t happen to me” belief that gets many of us through life. I’m a worrier by nature. Takeoff makes me nervous and the word cancer makes my stomach turn. And yet I still fly and could improve some health habits. Now for the first time, I truly realized that anything can happen to anyone at anytime. My plane could crash. I could actually get cancer. Fortunately we had so many other family and friends there to support us through all this. So thank you to all of you.

He never exactly had issues eating, but he would be so sleepy from meds and seizures that a feeding tube was used from time to time.

Connor’s official diagnosis wouldn’t come for several weeks. That’s the genetic test confirming his TSC, but from the rhabdomyoma in the heart, and the seizures, tuberous sclerosis was the immediate thought. He subsequently had an MRI for his brain, a kidney ultrasound, and an eye exam as those are areas most commonly affected. Thank God his kidneys and eyes were clear. But clearly the brain wouldn’t be. The tubers, including the one that would be surgically removed were evident. For my next entry I will get into the specifics of what TSC is.

Breastfeeding never worked out with all that was going on, so I pumped for the next 3 months until I couldn’t take being attached to the machine anymore. But it may have been for the best considering I had to carefully time my glasses of wine around pumping. Otherwise I probably would have knocked out a bottle on a nightly basis. When I tried going online for advice, I was shocked by how harsh and nasty a lot of the hardcore breastfeeding community is. It left me with a lot of guilt when I finally quit, but I had to for my mental state. It also left me disappointed that there was yet one more way in which women can be extremely unsupportive of other women. It’s easy to judge when everything goes hunky dory according to plan, isn’t it? I still have hostility about it. But women need to know that it’s extremely common to have problems with latching, pain, lactation failure, and many other things. So NYC’s Mayor Bloomberg can stick it where the sun don’t shine.

I can’t remember if this particular EEG was 24 or 48 hours.