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Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Diagnosed With TSC Less than a Month Ago

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Day 5 of Guest Blogging for TSC Awareness Month

By guest blogger Heather Lens (Stillwell, Oklahoma)

I’m not sure where to begin except right here…

Our world forever changed on April 13, 2013. It actually kind of started the Wednesday before, right before church. I was feeding Maddie and she kind of had a twitch, but it Heather's familyhonestly didn’t look like anything more than that. By Friday I started noticing a small trend. She was twitching when she was getting tired so I went straight to the pediatrician. They were going to refer us to a pediatric neurologist in Tulsa for an EEG to rule out seizures. It was going to take a week to get into them. At the time it seemed like a good thing…If they aren’t getting us in that day it must not be anything too bad. Once again, they weren’t crazy seizure like activities.

By Friday night, Chris and I had noticed these movements were looking worse and her face was making different movements that we did not like. Saturday morning we headed straight to St. Francis Pediatric Trauma Center. It’s the nearest children’s hospital to us. We figured that they would be the best place to go if something was wrong, since it was a children’s center. They quickly got us admitted after seeing a video of one of her episodes, and that’s where everything went a little blurry. The first round of testing began… They drew blood to check her blood levels. They were thinking her potassium, electrolytes or sodium may have been off which could cause seizures. They then did a 20-minute EEG. Maddie did great with the test. She laid there like a champ as they hooked her up to 30 or so electrodes. I think Chris and I were hurting worse at that point. Seeing your beautiful perfect daughter hooked up is an awful feeling. Later on that day the doctor came in and broke the first part of our not so great news. Her EEG was abnormal and they confirmed that she had a diagnosis of infantile spasms which are caused by hypsarrhythmia. It’s where the brain sends of chaotic brain signals. Even though we thought something may be wrong, the news hit us like a ton of bricks. They were going to need to put on a EEG for 24 hours and monitor her by video as well.

The placement of the 24-hour EEG was the worst thing I have ever been through. Maddie was screaming, and Chris and I could only sit there and look at her while she was in such distress. It was the most helpless feeling ever. She ended up being on the EEG for over 30 hours. On the third day of our hospital stay they were going to do an ultrasound on her kidneys and abdomen to look for tumors that could be caused by a disease called tuberous sclerosis. They said that some babies who have IS can also have tuberous sclerosis. They also wanted to do an MRI to take a look at her brain. After finally getting the 24-hour EEG off, they took her back for her MRI, which was under sedation. It was another experience that no one should have to go through. She screamed as they sedated her and was fighting sleep so bad. She finally gave in and they took her limp body back to the room. My husband and I both broke down. Watching our perfect little girl look so lifeless was absolutely heartbreaking. We later got the results back from the ultrasound that there were no tumors on her ultrasound and we were thrilled! We just knew her MRI would come back clean. Unfortunately, we were wrong. The MRI came back with tumors on it. This news was the most devastating news our ears could hear…We looked down at our baby girl with tear-filled eyes. We didn’t understand how this could be happening to her and our family? She has been healthy and had been hitting her milestones. How on earth could this be real? After emotions of hurt, sadness, guilt and many more, we felt the prayers and realized that these conditions just make our precious girl that much more precious. We let it all out and then turned our eyes to the only one who can comfort us, God. We knew that we had been put in a crazy spot for a reason. God had entrusted Chris and I to take care of this precious girl because He KNEW THAT WE COULD DO IT. What an honor to be her parents! We know we have a lot of work ahead of us.There will be a trial of medicines to try and stop these spasms, and unfortunately TSC will be a condition she lives with. That being said, we know some people live a normal life with this disease. We are hoping for that, but will not be discouraged if that isn’t her path. We will change our normal and make it a new normal. I dislike the word normal anyway…Who wants to be normal? Not Miss Maddie!

“Whenever God gives you a gift, he wraps it up in a problem. The bigger the gift you have coming, the bigger problem you will receive. But the wonderful thing is that if you look for the gift, you will always find it.”

Please check out Heather’s blog at www.chrisandheatherplusone.blogspot.com

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Parenting, Tuberous Sclerosis

How I Found Perspective

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My one-year-old son Connor and I were stalked the other day. It happened at Target as I pushed his umbrella stroller through the women’s clothing section. Our stalker darted from clothing rack to clothing rack, unaware that I was watching out of the corner of my eye. I’d estimate that she was about five, and I’m pretty sure the reason she was following us was because she wanted to know what the thing was on Connor’s head. I would have just told her, simply said, “Oh, it’s just a cranial remolding helmet for the plagiocephaly that has occurred in the posterior region of his skull. No biggie.” Okay, that’s not really the way I would say it to a five-year-old, but I felt like I would ruin her fun by acknowledging her presence.

Yes, Connor has a fancy, new, almost $3,000 hat. And that’s minus any bling. You’d think three grand would get you some rhinestones or something. Thus far it has not impeded his favorite activities, which include throwing everything on the floor and turning his bottle upside down and squeezing the nipple to fill his belly button with milk. Or this:

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Connor’s physical therapist had brought up the possibility of a helmet many, many months ago when the flattening of his skull was much more extreme. We were able to do a great deal of correction simply by positioning his head, but he was still left with some residual flatness as he neared the age of one, so his neurologist suggested moving forward. I wasn’t thrilled with the idea of a helmet, but accepted it. I made the appointment and took Connor for the fitting. There were pictures and sample helmets around the office. I actually found myself getting a little excited. Having to get the helmet wasn’t ideal, but I couldn’t believe how adorable some of them were. There were tons of designs to choose from, and I narrowed my top two down to one with airplanes and one with soccer balls. Then the orthotist returned and obliterated my adorable vision of Connor with airplanes circling his head. He felt very strongly that the clear plastic helmets were a better choice than the more popular styrofoam lined version that come covered in adorableness. Plastic ones were less likely to chafe the skin, they don’t absorb sweat so they don’t stink, they are easier to clean and you can see any skin irritation that may be occurring. They can also be vented by drilling holes in them. I nodded along in agreement and said things like, “Can’t argue with that.” But in my head I was cursing the stupid practical helmet, that for the same price, comes minus flaming soccer balls. How do you say, “I want the cute one,” after that? But stinky styrofoam? I could wash dishes with the sweat that pours from Connor’s head, so clear plastic it was. That wasn’t the only moment my stomach would drop during the appointment. To be honest, I went in having done no research. I’ve spent the last year reading so much about his genetic condition of tuberous sclerosis complex that I just wasn’t that worried about a helmet. I’d find out the details when I needed to know them. So I was not expecting to hear that he had to wear it 23 hours a day. I also wasn’t excited to hear that while treatment is usually three to six months, since Connor didn’t get his until he was a year old, his treatment would likely be closer to six months than three.

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Those were my only negative moments though. Do I love the helmet? Not so much. I hate that it makes his head sweat so much that the effects of a bath are destroyed ten minutes after I put it back on his head. I hate that my adorable child has to wear it 23 hours a day. Oh, he’s still adorable in it mind you, but no parent wants anything to prevent onlookers from having the full experience of perfection that is their child.

I think if the last year had been “normal,” this helmet would really bother me. They’ve become much more common since the “Back to Sleep” campaign to combat SIDS, since putting babies on their backs has caused a huge increase in plagiocephaly (which is far preferable to SIDS, obviously). Nonetheless, I think I’d take it off him every time he left the house or someone came over. But the last year has not been normal. Connor was born with tuberous sclerosis complex, which causes benign tumors to grow in the organs. Currently, only his brain is affected, but we’ve dealt with five weeks in the NICU, seizures, brain surgery, daily administration of several medications, multiple EEGs, MRIs, infantile spasms, gross motor delay and speech delay. He has physical therapy, speech therapy and music therapy. I could care less about a stupid helmet.

I want a life where I care about the helmet. I also want a life where the opthamologist assures me that the occasional crossing of his one eye is not a big deal, but if it gets worse, it can be corrected with glasses, and then I freak out about how I don’t want him to have glasses. But I don’t care about the glasses either. I don’t want to be the mom that impresses the doctor by taking glasses (and helmets) in stride because after everything else, they just don’t matter.  “A lot of parents ask if their kids can just have eye surgery instead,” the assistant told me. “They’d rather their kid have surgery than have to wear glasses. I guess TSC really gives you perspective.”

Perspective. I’m drowning in it, whether I like it or not. And it only took me 31 years to find it.

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Boston TSC Study, Ordinary Life, Parenting, Travel, Tuberous Sclerosis

Do you like apples? Connor went to Boston! How do you like them apples!?

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Connor's first airplane ride.
Connor’s first airplane ride.

We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.

I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.

Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early.  Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.

It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.

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We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.

We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.

What are these tiny pillows on a king bed?!!
What are these tiny pillows on a king bed?!!

Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.

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Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.

All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.

This is a Harvard snowman. I rest my case.
This is a Harvard snowman. I rest my case.

We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.

His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…

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Ordinary Life, Parenting, Travel, Tuberous Sclerosis

You want answers? I WANT THE TRUTH! Well, good luck with that.

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December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.

It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.

Pics from Florida:

A snowman

A pool

A pier

A kiss

A flamingo Santa

A elf

A duck

A crane

A chris and me

So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”

Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.

So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.

But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?

Headed home after his two-day EEG. Too bad he can't open his eyes to see his awesome hair.
Headed home after his two-day EEG. Too bad he can’t open his eyes to see his awesome hair.

I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.

There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook  about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.

As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.

Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:

B outside

B Santa

B soldiers

B train B tree

B room

And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!

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Shots of Connor’s first Christmas in the next blog entry!

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Parenting, Tuberous Sclerosis

And the results of Connor’s EEG are….Mom is clinically insane!

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What a lovely evening. I am lying. There is a possibility we will be discharged tomorrow instead of Friday. If there is a God, he will get me out of this place. Oh, Connor’s fine. But I’m going mental. I can actually handle staying here, no problem. It’s the not having control thing that is making me completely insane. Tonight the meds came an hour and 15 minutes past his med time. By then I’d had to give in and feed him although feeding him is essential to getting the meds into him, and we’d missed the window to put him to sleep. So my baby that goes down no problem 98 percent of the time, screamed for an hour, and now continues to stir every so often and wake up to cry enough so that I have to pat him back to sleep. Just when I thought we established a firm schedule of the meds being 40 minutes late. Look, if you won’t allow me to do it, then you gotta bring them on time. And if you’re understaffed and it can’t be done, well, then you’re gonna have to let me freakin’ do it. I’ll sign a damn waiver.

So, the big news! What do we know so far? Our neurologist stopped by to talk about what he’s seen so far on the EEG. Connor has had a few episodes now which could clearly be seen on the video and the neurologist has gone over the activity that coincides with those events…and the conclusion is: Drum roll please!!!! (you better be pounding your desk at home)

Nothing. We still don’t know. Nothing is there. No seizure activity is appearing on the EEG. Everything looks good in the abnormal way the EEGs of people with TSC can look good (meaning it is normal for people with TSC to have an abnormal EEG due to the tubers, even if they are having no seizures).

WTF, baby. WTF.

Since all the activity is with the eyes he added two more electrodes right next to them to see if that changes anything. So we shall see. I suspect we will check out knowing no more than when we came in. However, we may be increasing the keppra as his episodes got shorter last time we did. And possibly going down on the klonopin (clonazepam) as that never seemed to do much.

So, I’m glad the EEG looks good, but ummm, apparently we need to work on Connor’s attitude because he rolls his eyes at me at least 50 times a day. Just kidding. I don’t know what to think.

I just scanned over what I’ve written so far and it reminds me of why I hate baby discussion forums. Everyone talks in acronyms and I got sick of having to google everything they said.

The day was otherwise exciting as the kids got a visit from the seizure dog today. Connor loves dogs. I’m bummed I wasn’t able to snap a pic of the big smiles he had when the dog came in. It makes me really want to get him one, but Chris and I both agreed they were too much work. So we had a baby instead.

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seizure dog

Connor also managed to massacre the electrodes on his head today. Two factors contributed to this. One, he inherited this crazy gene from his father that makes him sweat even when it’s 20 degrees out. Two, he likes to yank on things, especially wires and hair. Once he had created a sweat lodge inside his gauze turban, it was all over. It started to unravel around 4. Previously someone had come in right away if something came loose, but this time no. I casually mentioned it to a nurse, but I guess I didn’t properly express the imminent danger of these tiny little hands. Later, Aunt Donna came to watch while we went to dinner. It was straight raggedy by then. And when we returned, I guess one of the techs had shut it off from their remote monitoring station (perhaps located in the Lost hatch?).

Just then the nurse arrived, so I addressed the elephant in the room.

“So we’re here for an EEG, and jeepers this is awkward, but there is no EEG. Does this mean I can go home and hit the Jack Daniels?”

I will say, someone was there shortly after to redo it. Shift change had just occurred. When I replied 4 o’clock to her inquiry about when this started coming off, her expression was, well, I will call it “interesting.”

Connor would rather go get a frappucino.
Connor would rather go get a frappucino.
Yup, data is looking a little questionable.
Yup, data is looking a little questionable.
I look away for 2 minutes and he's draped himself in wires and other medical material.
I look away for 2 minutes and he’s draped himself in wires and other medical material.
EEG part deux
EEG part deux
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Parenting, Tuberous Sclerosis

It’s a good thing I’ve learned in the last few years to be a more positive thinker…

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…because people are driving me insane. In order to maintain my positive thinking, I must vent somewhere, so even though I’m about to do some more complaining, I’m just emptying the irritation can so I don’t kill anyone who looks at me funny tomorrow.

So first, the good thing. Since I’m reporting to you live at Connor’s hospital bedside, I can tell you he’s had two episodes while hooked up to the EEG. Finally. They weren’t able to thwart us this time. He’s having more clusters a day, though the clusters tend to be shorter than before. Today I saw five for the first time since this eye rolling started, although the last one, may have only been a couple quick rolls.

All hooked up with nowhere to go.
All hooked up with nowhere to go.

Now here’s the part where I unload. What can I say? I’m tired. This EEG business has been going on since 6 am (and I don’t count the ordeal of getting this appointment-see previous posts). I had to wake up to call the transfer center to see if there was a room for him. There wasn’t. But that was okay because I knew it was a possibility we would be on standby at first waiting for one. At least they let us wait at home. So I have to call back at 8. Then I have to call back at 10. Then they say call back at 12. Okay. Deep breath. Sick kids get precedent and apparently there’s a massive influx of RSV cases. I’m not a monster. I do understand that. Another deep breath. Then YAY! They call ME back at 10:30 and say to be here by 12 because they will get him hooked up in the lab and hopefully a room will be ready by then. So we come to the hospital. Where we wait. And wait. And wait until two hours later he gets his electrodes. But there’s still no room, so the test isn’t going yet. So we wait. And nap. And wait. And we finally get a room at almost 5 pm.  They almost broke me waiting for the electrodes. Oh yes, it was close. But I maintained.

Killing time, waiting for the room.
Killing time, waiting for the room.
Shut up, Mommy!
Shut up, Mommy!
That hurts for realsies.
That hurts for realsies.

That was nothing. Here was what really got my heart thumping. We went over all his meds earlier in the day and they had been submitted to the pharmacy. It was made very clear that all meds during his stay would come from the hospital pharmacy and must be administered by the nurse even though we do it at home every day. I will cut them a break on that given the litigious nature of this society. But, one of Connor’s meds is not easy to obtain. I was highly doubtful they’d even have it in stock considering I heard they recently ran out of a major antibiotic. But hey, they have all their information hours before his med time, right?

His med time in the evenings is at 8. At 8:25 I was about to call and see what was up because he was getting sleepy and cranky, when the nurse comes in. We administer Klonipin. Then Keppra. Then…taking vitals? “Are you giving him his vigabatrin?” I ask. “Oh the pharmacy wanted me to ask you about that. They wondered if you had it here because they don’t have any.”

For a moment I flashed back to the night a few years ago that I was at my favorite bar, Fado (before it moved and stopped being awesome), having too much to drink and breaking up with a guy via text (don’t judge me for the text. I don’t usually condone that. There’s more to the story). I was, shall I say, not in a good mood, and fueled by alcohol. Fado had recently hired a new valet, and he, how do I say this politely, sucked a fat one. Drunk girl was ready to leave, he had my keys, and was nowhere in sight. (Disclaimer: I am not the one who drove my car home). Thirty minutes later, after inquiring to his whereabouts with several bartenders, he wanders out of the kitchen where he was hanging out. I said, “There you are! I need my keys!” And he said…are you ready for this? He said, “Relax.”

I. Lost. My. Sh#%. Lost it big time. It is the only time in my life I have ever gone off on someone in the service industry. And as I did it, I could see my friends Lili and Angel desperately looking for an exit so they could disassociate from me. I went batsh#% crazy. But I don’t feel bad because I would be vindicated another evening when he blocked a bunch of cars in and failed to take the keys from the owners blocking them.

But Connor cannot duck away from me. My actions can affect him and his future treatment, whereas I knew our favorite bartender Kevin would never fail Angel and Lili, so I calmly replied, “Yes. I did wonder if you would have that drug.” What I did not scream was, “ARE YOU EFFING KIDDING ME? THE PHARMACY JUST FIGURED THIS OUT? WHAT IF I DIDN’T HAVE IT? IT’S ONLY HIS MOST IMPORTANT MEDICATION!”

I’m growing.

And when I was asked to turn it over to have the pharmacy verify it, I stashed a bunch out of sight. Navigating the medical world.

I’m learning.

eeg playing

Video EEG screen
Video EEG screen
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Parenting, Tuberous Sclerosis

I do it when I feel like it, lady!

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Okay…yesterday’s post was a bit of a downer, so I thought I’d share some good stuff. First of all, thank you to everyone who reached out with stories to make me feel better about Connor. He decided to cheer us up the next day by being much more engaged with playing while sitting. I think a few things just came together in the last week that caused us to bum that night. One was that his physical therapist expressed concern that he’s not as engaged with his toys in a sitting position. Honestly, I’m not sure what to think about that. If he’s lying down or in his bouncy chair he’ll bang the suspended toys around for hours, so it’s not like he doesn’t play. Once a toy is in his hand while sitting he can develop a death grip that likely matches Charlton Heston’s around his gun collection. But he tends to need a little prodding to reach out and grab his toys when sitting up in a chair. That day we were upset, he was particularly disinterested in doing so. The next day he was far more cooperative.

Another piece to the puzzle was that Connor went in for a followup hearing test. His hearing is perfectly fine, but when they did the part that tests his cognitive response to sound, meaning checking to see if he would turn and seek the sources, he didn’t do so hot. He didn’t seem particularly interested in seeking out where the noises were originating from. The thing is, Connor never does as well with this stuff with people he doesn’t know well. I’m not saying he isn’t somewhat behind, but I think he does far better with us than in a testing situation with total strangers. I couldn’t help but notice that afternoon, when he tagged along with me to the salon, that his head was turning all the time. He was between two stations, and the blowdryer would come on to the right–TURN. My stylist starts to talk to his left–TURN.

Then this morning was very exciting. Connor has never showed a whole heck of a lot of interest in rolling over. This was of slightly less concern to me because I’ve had many people with chunky babies tell me their kids didn’t care to do so either. He has previously rolled over from front to back before, but him doing so required that his arms happen to be in an awkward position that lent to him doing it. He wasn’t repositioning his arms to make it happen. If they weren’t already where they need to be, he didn’t bother. This morning, when Chris went to get him out of the crib, he decided to put Connor on his stomach. Connor reached out with an arm bent at a 90 degree angle and pushed himself back over. Then he did it three more times! This is so exciting! He was truly making the effort to find a position to turn himself without waiting for us to position his arms for him.

So moods are elevated in the house again.

But this wouldn’t be my blog if I didn’t complain about something, so…that EEG paperwork? Still don’t have it. Today is day #4.

I’m very excited about a trip I’ll be making in February to Washington D.C. I’ll be tagging along with Wendi Scheck and some other ladies of the North Georgia TS Alliance for the annual March on Capitol Hill. We will be joining the headquarters of the TS Alliance, as well as people from all over the country to meet with senators and representatives and advocate for federal funding for TSC research. And mark your calendars, Atlanta peepz. The 2013 Step Forward for the Cure is taking place on Saturday May 18. We had a huge team last year, and everyone is welcome back again, as well as anyone new who would like to join us. There is no minimum to raise and I will post when the online sign up is ready. We raised over $6,000 last year!

For my readers who aren’t local, but are interested in taking part in a walk, here are the other walks (and other events) that have been scheduled thus far:

Jan. 26- Singing for a Cure at Paddy Whacks Pub, Philadelphia, PA

April 7-Comedy for a Cure at Lure, Hollywood, CA

April 27- Mountain Brook, AL Walk

April 27-Scottsdale, AZ Walk

May 4-Houston, TX Walk

May 18-Chicago, IL Walk

May 18-Atlanta, Ga Walk

May 18-Long Beach, CA Walk

June 1-Noblesville, IN Walk

June 22-Washington DC Walk

Oct. 5-Des Moines, IA Walk

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Orphan Drug Act

http://www.fda.gov/RegulatoryInformation/Legislation/FederalFoodDrugandCosmeticActFDCAct/SignificantAmendmentstotheFDCAct/OrphanDrugAct/default.htm

Anxiety/Depression, Parenting, Tuberous Sclerosis

An early morning with my little rooster.

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Yay! It's Christmastime!
Yay! It’s Christmastime!

Last night was a little bit of a bummer for Chris and me. I think it just suddenly hit us with great frustration, the ways that Connor is behind physically. We’re really focused on getting him sitting independently, but he’s definitely not where an 8.5 month old should be. It’s not that we didn’t already know he was behind, but as he gets older and babies can be more active, it’s so much more obvious. I find myself obessing over other babies I see doing more that appear to be smaller in size. Granted, the fact that he’s a chunk doesn’t help, but it used to be if the baby turned out to be older, it didn’t bother me so much. Even if the baby was just a little older, I’d feel okay. But a few days ago we were having breakfast at J. Christopher’s and there was a small, but very active baby girl in a high chair. Even though she was much smaller than Connor, I guessed her to be 9 months. Plus she had older siblings. And she’s a girl! Girls develop faster, right?! I’ve seen kids running, literally, that were smaller than Connor and when I ask, they turn out to be in the 18 month range. When mom replied, “Seven and a half months.” I clenched my teeth and faked a smile. She was supposed to be older than Connor, even if only by a couple weeks.

Whatever these eye rolls are, presumably seizure activity of some sort, I think they are slowing him down. I’m anxious to get our EEG done so we can hopefully adjust meds. Better yet, would be to find out that it’s some sort of harmless electrical activity, but considering they mimic seizures by occurring when he’s very sleepy or right when he wakes up, I don’t know if that will happen. He sped up so much after surgery when the complex partials stopped, but we’ve been on the edge of sitting independently since September. Yes, he’s better, but I thought it would have been mastered long ago.

Why do seizures have to be so annoyingly complicated and present in so many ways? Before all this, when I heard the word seizure I envisioned the classic grand mal (now called tonic clonic) as presented on TV shows and movies. Even if you read descriptions of the different seizure types it can be very confusing because the written description may not match what you’re seeing. I was baffled forever because we were told that his original seizures were complex partials, yet when reading about them online, the physical description was nothing alike. His body would jerk, in a manner more resembling a tonic clonic. But it has more to do with how it works in the brain. A tonic clonic is way more intense, even if it does have similar jerking movements. Some seizures are just staring. Some people have what seem like anxiety attacks, but in fact could possibly be a tyoe of seizure. Take his eye rolling for example. We see the TSC neurologist, and yet he’s never even seen this before.

Argh! I try not to let it get to me. It doesn’t mean he’s not going to do these things. I know he will. Developmental delays are extremely common in TSC, and it doesn’t mean he can’t be a normal kid (albeit perhaps dealing with some TSC issues), but it’s still nerve wracking. I get comfort from interacting on the TS Alliance website with adults who have TSC, and have lived pretty normal lives. That’s not to say they don’t have issues to contend with, but they went to college, have kids, have jobs, etc. Some of them, being born at a time when jack was known about this disease, say their parents were told they would be dead by the time they were 3, 5, or 8. Some parents were told they would be vegetables unable to function at all. And here they are, talking to me on FB. Medicine has come a long way. I don’t think most parents upon diagnosis today get these doomsday diagnoses, because they simply aren’t true. Yes, there are severe cases to be sure, but such predictions can’t be made about a baby. I am thankful that we live in a big city, though, because from time to time I come across people in small towns whose doctors have been practicing since those olden days or can’t work the Internet because they still throw that stuff at them. Oh, your kid will never walk, talk or read. Wrong. There is no shortage of parents who were told that and it wasn’t true. Their kids did all those things.

I’m just really ready to do this video EEG and see what’s going on finally. If the neurologist’s office hadn’t stepped in to help us, I’m certain we wouldn’t have heard by now. I hear it’s quite common for it to take some time. While I understand there’s some coordination that has to take place, and perhaps expecting a same day answer is unreasonable, the fact that I was supposed to receive the accompanying paperwork via e-mail two days ago leads me to believe that patients are waiting longer than they should have to. I was told it would come the night we made the appointment. It didn’t. Out of concern that it didn’t go through I contacted the hospital again to make sure that wasn’t the case. It hadn’t been sent yet, but would be sent that day. Still didn’t come. Day number 3, we shall see… People don’t have EEGs for fun. They are indicative of a problem. They should be scheduled as quickly as humanly possibly. But, hey, what do I know.

But things always seem brighter in the morning, even at 5 am surprisingly. Connor decided to wake up nice and early. Since Chris had to go into work today, I brought Connor into bed with me where his hijinks continued. He was enjoying some early morning shrieks (for fun, not upset) and kicking the mattress. I was half asleep “talking” to him, repeating his sounds back. And if I dared nod off, he’d manage to seize my blanket and yank it off me (Baby danger! Baby danger! Can’t let him suffocate under my blanket! Man, he knows how to play me). At one point I awoke to him yanking my hair. So much for the 10 inches I cut off. We’ve been reading books all morning, aside from the nap that was required for both of us. He’s also getting pretty good at feeding himself his bottle, although he needs help with the second half because the concept of tipping the bottle hasn’t quite taken hold. We started sippy cup training, which is going great (insert sarcasm). He hates the sippy cup so far. We started with a regular one with a hard plastic mouth piece. That was a resounding “oh hell, nah.” Then we got one that’s flexible like a nipple but shaped like a sippy mouth  piece. He did take a few sips before the resounding, “oh hell, nah.”

Progress is progress, right? Perhaps the fact that it’s 4 p.m. and we’re both still in pajamas means I’m not setting the best example for motivation…

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Travel, Tuberous Sclerosis

Connor’s featured on Toemail!

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I’ve been following a blog called Toemail, which will surprise many of my friends because I used to have a hideous aversion to feet. Baby feet are another story though. Those are awesome. And my fear of feet in general is fading with time… just don’t get them too close to me. I really enjoy this blog though because people submit pictures from all around the world. Check out Connor’s post here. And then check out the rest of their site. It’s pretty cool!

On another good note, with some help of our medical assistant from the neurologist’s office, we finally got Connor’s EEG scheduled for December 18. Mommy’s blood pressure can go back to normal now.

Parenting, Tuberous Sclerosis, Uncategorized

Does insurance cover anger management?

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Mixed Up Mommy is just really in a pissed off mood today. All these years I’ve taken crap for being part of the teaching community, and everyone likes to crap on the teachers all the time. (“I pay your salary!” Oh yeah, well I pay taxes too, so I guess that makes me self-employed.)  How about we turn that energy and focus it on the medical community…I’ll exclude nurses there since much of the time they seem to be the only ones doing anything, with the exception of Connor’s time recovering from seizure surgery on the seizure floor. They didn’t impress me much, but otherwise, they seem to be the only ones who get anything done. First of all, I’m sick to death of the administrative people. I hate them the most. They don’t give a damn. I’m sick of waiting for phone calls to be returned. This past summer, just to make an appointment with our surgeon, the scheduler took a week to call me back. Scheduling surgery? Another week. I received a bill that made no sense for $200 from the Emory-Children’s Clinic. I spent a month trying to get the billing department to call me back and explain it. I didn’t get a response until I mailed them a letter and sent a copy to every single member of the board, including the CEO. And it was a mistake. We didn’t owe anything. I’m sick of having to call doctors over and over and over. I’m sick of inordinate amounts of time in waiting rooms. I’m annoyed that we spent so long waiting for our eye appointment this morning that the doctor couldn’t even do the full exam because by then Connor was in one of those deep unarousable baby sleeps, and we had to go off the intial exam done by the tech for part of it.

I’m also pissed that I found out that the results of the ERG that was done on Connor’s eyes at Scottish Rite September 7 were never shared with anyone. His eyes have to be monitored because of a risky medication he’s on. This was just the baseline test to see where his vision started out before starting meds, so I wasn’t concerned, but I did notice they never contacted me with results. It was stupid of me not to follow up, but up until now, the one thing that does seem to go well in baby medical care is the sharing of the information. All Connor’s doctors and specialist do a good job of contacting one another about everything and always have on file what has gone on elsewhere. So I stupidly thought that a test that required sedation and admission through day surgery at Scottish Rite would warrant sharing with SOMEONE. But apparently we went through all that so the results could sit somewhere in lala land not be used for anything. Now I get to track them down and get them sent to the other doctors.

But, hmmm, how does one get another department to return your call when one can’t get a return call from the one she’s been trying to get in touch with since Wednesday? Thank you to the EEG department for closing for the weekend without returning any of my calls. Cuz God knows it ain’t no thing to squeeze in a 3-day EEG during the holidays. So I guess it’s the battle of the EEGs and ERGs.

But hey, it’s not your kid. What the hell do you care?