Tag Archives: tuberous sclerosis

Vigabatrin may be causing changes on the ERG.

I got a really aggravating phone call yesterday. It was the opthalmologist’s office after they reviewed Connor’s ERG from last Friday. Connor is supposed to undergo a sedated ERG every three months (description here) because he is on vigabatrin- a powerful seizure medication with the potential side effect of loss of peripheral vision. He was on it for nine months previously for infantile spasms. We weaned him off and began to see increasing seizure activity–complex partials, which vigabatrin is also used for. So we went back on it. Connor had two ERGs the first time around. Being that it is sedated and requires an IV, it is no simple procedure. It is handled by day surgery. So we didn’t adhere to the every three months suggestion. We chose not to have an exit ERG when we stopped because the first two ERGs showed no change or issues. We figured at that point, why put him through that, when it won’t change anything? Even if there had been some changes to his vision, he wasn’t having issues and it can’t be corrected. We had no reason to think there were any issues anyway. While there are definitely some stories of kids with some loss of peripheral vision, the stories of no issues seem to outnumber them. That is purely anecdotal by the way–not evidence based–just my experience online. So we don’t know if this occurred last time we were on it, or in the short amount of time this round.

I was so sure we would never have an issue. But the eye doctor reports “minor changes” likely related to the vigababtrin. The neurologist’s office referred to them as “early signs” that the vigabatrin is causing changes. That’s as much as I know. Connor’s primary neurologist is out of the office until Thursday, but we actually already had a followup scheduled Friday morning anyway, so at that point we will have to discuss our options.

Connor is not going blind, to be clear, but nobody wants to see any damage to their child’s vision. But I’m so frustrated. We’re seeing improved seizure control since restarting vigabatrin. Control we couldn’t get with Keppra or adding Onfi, and Trileptal was a total fail. Phenobarbital was used early on, but needed other meds added and is not the drug I want him on anyway. He was on Dilantin for a bit, but when his levels were checked they were nothing, like his body just ate it up (He’s currently on Keppra, Onfi and vigabatrin).

The issue was a no-brainer when we were dealing with infantile spasms. I wouldn’t have even considered taking him off, even with vision loss, because of how dangerous those are. But now that it’s complex-partials, I don’t know what to do. I mean if nothing else will control it, we need to stay on it and hope there are no further changes. He can’t have seizures all day long. But can there be something else that will work?

I just hope his neurologist has a strong idea of what direction to take, because to be honest, I don’t feel equipped to make the call.

It always has to be something. Suck it, TSC.

Fall explorations.
Fall explorations.

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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.

Remember when I gloated that we were done with vigabatrin? Oops.

Note: So I wrote this blog yesterday, but was unable to post it. “Why is that?” you probably didn’t ask…well, you know how Comcast never wants to come out the day you need them, or they give you a window of say, 4 to 8 p.m. and show up at 7:59? Well, try canceling your service. THAT they can do not just on time, but BEFORE you asked them to. Way to make a random burst of efficiency another aspect of your subpar business model. There is an update at the bottom from this morning. 

It was a grumpy weekend. We’ve been packing the house, getting ready to close on Friday, and I’ve not been able to summon any energy or interest in the process. Plus Connor’s seizures have been increasing. We were concerned a couple weeks ago when he had eight in a day. Then this past Thursday he had 13. Earlier this year we went a couple months with nothing! We had this beautiful period of time when we didn’t even touch our —Seizure Tracker App— What is going on? Then this happened:

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See that? Do you? 50 seizures in one day? What. The. Hell. Was. That.

A few possibilities. 1. We weaned him off Sabril (vigabatrin) a couple months ago and maybe that was a mistake? They’ve been increasing ever since. 2. Since Trileptal failed, we have been weaning him off and starting Onfi. Maybe he just hit an all time low of meds in his system as a period of time of low trileptal as we weaned and low Onfi as we started intersected.

Maybe there is still a chance Onfi will work? I hope so. We will obviously go back on vigabatrin if we have to, but I would really rather not with all the eye appts and ERGs that go along with it due to the risk to peripheral vision.

I called his neuro on Saturday when this was happening as someone is always on call. Everything always happens on weekends, doesn’t it? All those months I laid awake in fear of the onset of infantile spasms, I thought, I know they will start on a Friday night. They did. Thank God, that was how I discovered they have someone on call on the weekends. This weekend, however, it was someone covering for them, not his regular neuro or his partner that diagnosed him and also knows Connor well. He had me administer Klonipin 2x daily to get us through the weekend. I just got off the phone with Connor’s neuro and we discussed the concern of whether these could be spasm related, so I sent him the videos I was FINALLY able to get this weekend –these seizures come on so fast it has been a pain– and he went ahead and increased the Onfi.  Coincidentally we have an appointment with him tomorrow morning, so hopefully we can figure out a plan. My guess right now would be that we’ll probably give Onfi a little longer, since the seizures haven’t been AS crazy as Saturday and if we don’t see a change soon, back to vigabatrin. That’s my guess anyway. We’ll see in the morning.

I just don’t want anything setting him back. He’s doing great. He has gained so much in the last couple months. He only just started crawling and now he’s pulling to stand. Last Thursday in physical therapy we worked on showing him how to pull himself all the way up because he was only getting as far as his knees. The very next day he did it twice. And once again, we owe it to Emma Cat. His relentless pursuit of the most tolerant cat on Earth inspired him to try and get up the stairs. Getting mobile has really triggered his curiosity and he wants to get into everything. We don’t need a bunch of seizures slowing him down!

We also got his MRI results back from Boston. No growth! He has no SEGAS fortunately, and his SENs remain small. I’m waiting to receive more feedback on the tubers. Now that’s he older we should be able to get more details on the number of tubers and their precise locations. Hopefully this will help us target any potential issues he might have. For example, if he were to have one in his speech center, we would know that language development needs that much more attention.

The weekend wasn’t all bad though. My first planned event as the Chair of the TS Alliance of Atlanta/ North Georgia was Sunday. It was fun and I learned a lot about planning an event…haha. Some big lessons learned. But thanks to all who came out!

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The movers come tomorrow to get us out. We will be staying with my parents in the meantime. My plan is basically, walk in the door, hand Connor to them, go to bed, wake up when Chris has unpacked everything in the new house.

What could go wrong with that?

Update: The house is empty! I felt kind of sad to see it…our first family home 😦

We had our neurology appointment this morning. After seeing the video, he felt they were epileptic spasms, and they clearly started to surface after he was initially weaned off vigabatrin. So back to the vigabatrin we go. Oh well, anything to stop the seizures. As much as I don’t enjoy mixing the packets (why can’t this med be made stable enough to come pre-made in liquid form!) or the regular eye appointments, it’s the ERGs I really don’t want to deal with. Ugh. But you gotta do what you gotta do.

So the plan is to start that, stay on the Onfi, and once we see a difference we can start weaning him off Keppra, one of the meds he’s been on almost since birth.

Tomorrow morning I get the joy of taking Connor to a 7:40 am eye appointment. It was to be his final required eye appointment due to his vigabatrin prescription. Now I get to hand him the paperwork to start all over again.

As Adam Sandler would say, “Whoop dee doo!”

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The scores are in…

Just received the results from Boston on his Mullen scores from the TSC study (nope, still haven’t heard about his MRI). Definitely a lot happier with the scores this time than last time.

Age: 17 months

Mullen Scale

Descriptive Category

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Age Equivalent

Gross Motor

Very Low

9 months

Visual Reception

Below Average

page1image26912 14 months

Fine Motor

Very Low

14 months

Receptive Language

Very Low

page1image33904 10 months

Expressive Language

Very Low

9 months

Obviously I wish there were no delays, but I’m pretty excited to see 14 months in two categories. That’s not too shabby considering all he’s been through. And I can’t say the low ones are a big surprise. He just started to crawl and he doesn’t have any words yet. But he is continually progressing and I believe he will get there, especially in motor skills. He’s pulling himself up on furniture constantly, and while he can’t quite get to standing, he is trying.

I’ve sent the results off to his Early Intervention team to get their thoughts…

Now if I could just get the MRI results.

Which is the bigger scam? Appraisals or the TSA?

The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.

Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.

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Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.

In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants  the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.

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We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.

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Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.

We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.

We watched Harvard's sailing practice on the Charles River.
We watched Harvard’s sailing practice on the Charles River.

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We played with ducks in the Gardens.
We played with ducks in the Gardens.
We visited the only Curious George Store in the world at Harvard Square.
We visited the only Curious George Store in the world at Harvard Square.
Connor demonstrated that high chairs work best when you sit backward.
Connor demonstrated that high chairs work best when you sit backward.
He stole my bed.
He stole my bed.
Plane watching at Boston Logan.
Plane watching at Boston Logan.

I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.

Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.

 

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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?

There’s a Storm Coming…

Connor is going to be a nightmare when he gets fully mobile. Don’t get me wrong — I’m counting the days — but as I type he is trying to kick my laptop off my lap. No, wait, now he’s alternating kicking his legs and shaking his head back and forth as hard as he can and smacking into me with his remolding helmet. His left side is covered in fur he tore out of Emma Cat. Did I mention he’s lying in bed with me because he’s totally wired and not even close to sleeping? And he keeps trying to steal blankets and pillows from us.

The other night he was lying on the couch with me and he bit my boob. As in, made me bleed. He never breast fed because he didn’t latch in the NICU, and all I know is that he tries to remove any finger that goes near his mouth. Those extended breast feeders must be out of their minds.

He’s just a big ball of toddler energy trying to bust out of a delayed body…but it’s coming. The reckoning. He will soon destroy this house and everything in it.

I can’t wait.

Huggin' it out.
Huggin’ it out.
Training for WWE Safari edition.
Training for WWE Safari edition. Also, I should put all those toys on eBay since he’s perfectly content to play with a spoon.
Still working on that hide and seek concept.
Still working on that hide and seek concept.

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.