Tag Archives: parenting

Parenting, Tuberous Sclerosis

What are all these baby torture devices?

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Connor has been on my case about not blogging for several days. He put me to work today.

I’ve never tried pilates, yet Connor possesses two pilates balls. In fact, if you inspect the portion of the house that contains his things (and by that, I mean every square inch of the house) you will see many strange looking items. This us because of his physical therapy that he receives via the state of Georgia’s Babies Can’t Wait program. Babies born with certain medical conditions that have the possibility of delaying their development automatically qualify for this program, regardless of the family income level. It means that a physical therapist comes to your home to make sure your child meets their development goals, and if they are behind, try to catch them up. Connor automatically qualified at birth due to having epilepsy caused by his TSC. Although he does have some slight motor delays from the pre-surgery seizures and five weeks in a NICU bed, she has no doubt he will do everything. Basically she comes in with new techniques to help him achieve each milestone more quickly than if left to his own devices, shows us what to do, and we continue the method on the days she doesn’t come. This has led to the proliferation of some weird things littering our living room, something my OCD husband has handled very well thus far. Some are on loan. Some we purchased. Others involved trips to Home Depot and some sweat equity.

An older shot of Connor and his therapist working on him keeping his head up for extended periods of time. This took him some time to master because of the seizures. Within a week of his surgery, he was killing this skill.

It’s a really good thing he mastered this head control thing because it meant tummy time went from this:

To this (with nose skin intact):

The therapist suggested having a mirror by him because it would motivate him and make him more aware. He absolutely lights up at the sight of himself. No self-esteem issues here.

Sherri, the therapist, has also helped us modify some of his toys so he could use them before he was quite ready. He couldn’t touch the floor in his jumperoo so we brought the floor to him, and because he was still building core strength, we rolled a blanket to place behind him to keep him steady.

We eventually had to create a more stable platform with phonebooks.

He no longer needs the modifications and now he looks like this, although he would like to point out that if I would remove his slippery socks he could do much better. Of course, it was pretty cute when he first started and looked like this.

We’re currently working on mastering sitting independently. He can for short periods of time, but needs to work on sitting a little more erectly. But he needs less and less support as time goes on.

First time in the Bumbo chair before surgery.

Sitting in his corner chair (on loan from therapist) because it requires him to do more work than the Bumbo.

The Boppy pillow also provides him support that will allow him to maintain a sitting position longer.

He finally started using a regular high chair on Thanksgiving.

This is one of our Home Depot projects. It’s a bolster we use to help him with crawling trechniques, and transitioning from crawling to sitting. Thanks to fancy, overpriced duct tape I was able to give it a race car theme.

And finally, here he is doing “pilates.” We’ve used two different sized balls to help him with head lifting, sitting, and leg reflexes. I also tried using it as a chair while watching Judge Judy. I have not pursued pilates beyond that.

There is still one corner in the house reserved for Mommy’s therapy:

We hope everyone had a fantastic Thanksgiving!

Ordinary Life, Parenting, Things to Do Around Atlanta, Travel, Tuberous Sclerosis

Magic Mike, wi fi, iPhones and other such things we can’t live without…

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People Magazine’s Sexiest Man Alive edition arrived the other day. Channing Tatum. Thoughts, ladies? I have to say I wasn’t really a fan until Magic Mike. That is embarrassing for me to admit because Magic Mike is one of the dumbest movies of 2012. Plus, and I hesitate to say this as a mom, but it wasn’t gratuitous enough. I mean it’s a movie about strippers clearly targeted at women wanting a girl’s night out, the majority of which, I assume, consumed alcohol beforehand. That’s what everyone did right? We did. And we went to a matinee. Yet, I think we can all agree that too many chances were lost with the other strippers. Joe Manganiello and the dude from White Collar were wasted opportunites. Just saying. I haven’t read the article yet. I don’t want him to ruin it by talking.

Chris, Connor and I spent the weekend with my parents at a cabin in Fort Mountain State Park in North Georgia. My parents do the whole cabin thing a little differently than Chris and I do when we go to the mountains with friends. Our cabins typically come equipped with pool tables or air hockey, a jacuzzi, satellite TV and more bear themed paraphernalia than you can stuff in an 18-wheeler. You know, just enough away from civilization without being too Deliverance about it. My parents like to roll rustic. No air hockey, a few basic channels and GASP no wifi or even much of a cell network period. I suppose I can’t deny it anymore. I’m a hardcore addict to my phone. I’m not like those freaks on MTV that sleep with their phone or anything (that’s ridiculous, clearly the bedside table is close enough) but take away my wi fi and 3G (yup I said 3G, lame Verizon) and you’ll find me desperately pressed against a cold window trying to simultaneously update my Facebook and Instagram feeds. We went into the town of Blue Ridge for the afternoon and I was like a crack fiend in a police evidence storage unit except instead of drugs I was getting high off access to technology. I’ve always been a fan of instant gratification, but the smart phone has ruined me. If I take a picture that I want to post, it’s not sufficient to post it tomorrow….I have to post it NOW! Some of you might be thinking, “Well that’s strange. She NEVER answers her phone when I CALL.” Yes, that’s right. I’m part of the new school of anti-talking phone addicts. I don’t want to TALK to you. But if you wanna text or Facebook me, I’m down. I’ve never been a phone person, even as a teenager. I remember how badly I wanted my own phone as a kid. I loved that phone, too. I was 11, and it was one of those phones with the giant buttons. I used it to call the theater for movie times. I wasn’t planning to go to the movies, I just wanted to dial the big buttons without actually talking to anyone. I’m pretty sure once people read this they won’t be trying to call me anymore anyway.

Maverick in Blue Ridge. Goose already bailed.

Something else I noticed at the cabin was that even though Connor is about to be 8 months old, I still can’t get used to my parents being Grandma and Grandpa. I still catch myself referring to them as Mom and Dad on Connor’s behalf, as if he’s my brother and not my son. “Oh, look what Da- I mean, Grandpa is doing!” I figure I’ll be able to comprehend that my parents are  grandparents just as soon as I start comprehending that I’m responsible for the well-being of a small human.

Connor’s eye rolling incidents continue. We’re pretty sick of them at this point, especially since we don’t have confirmation of what they are. I’m thinking about calling the neurologist this week and requesting a take home 24 hour EEG, something that the EEG tech mentioned was a possibility last time since Connor declines to have these episodes when electrodes are on his head. Even though he is doing well in spite of them, I’m tired of wondering and obsessing. I look at the clock every so often and think things like, “It’s 2:16. Can we make it to the end of the day without any?” Then I get over eager to get him to sleep at bedtime so I can officially end the count of episodes for the day. Since these started he was having 0-2 a day. Very rarely did he have 0, sometimes 2, and usually 1. Just the last couple weeks we started seeing more 0 days, which is good, but the 2 days increased and suddenly he had three random days with three. WTF? Yet, many of the events are shorter, so I guess it’s sort of a tradeoff? It’s so irritating.

Anyway, I want to share some links to some other TSC blogs I follow. I encourage you to check them out as long as reading mine remains your priority. 🙂 haha. Every individual’s experience with TSC is different, so you can read and share your experiences with others in the TSC community and have stories that are nothing alike. I interact with adults who have it and are doing very well, living normal lives (not to diminish the medical issues they do have to contend with. It’s a disease you must always remain watchful of), but there are those that need a lot of care because they are so severely afflicted. And it’s always in the back of my mind that though we assume Connor is a spontaneous mutation, as are 2/3 of TSC cases, without genetic testing, I cannot say with certainty that I don’t have it myself.

My friend Wendi just started her blog. She was the first person in the TSC community we met and talked to. When we found out about Connor’s TSC and that he was facing brain surgery, we came across her son Hudson’s experience on a couple websites and immediately contacted her with questions. Check it out here.

Another one is my friend Tina. I’ve actually never met Tina. She lives in California and we met online through our wordpress blogs, then FB. Check her out here.

One last blog for now. I do not know this family, but they appear in some of the TSC literature, so Facebook stalker that I am, I located Laurisa’s blog. Find it here.

And if you’re not sick of clicking links yet, please check out this video that discusses some of the reasons that TSC research can benefit everyone, not just those with TSC. Click here.

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Ordinary Life, Parenting, Things to Do Around Atlanta, Tuberous Sclerosis

Changing leaves and sharp teeth

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The second tooth is getting ready to make its appearance with a much bigger production than the first. So far I don’t care for this second tooth. It has an attitude problem so far as I can tell. The first one really just reduced his appetite (which wasn’t actually a bad thing), but this one is causing some very uncharacteristic fussing. All this, and I know they won’t even bother to stick around. These teeth come along, make us crazy, and just disappear in a few years as part of some sort of pyramid scheme with the Tooth Fairy.

We took advantage of the awesome fall weekend and my parental units as babysitters on Saturday and went to the Cabbagetown Chomp & Stomp. Some might question if it’s worth fighting the crowd to get tiny little cups of chili. The answer is yes. The joy I get from stuffing myself at chili cookoffs is somewhat sick. Perhaps because I think the small portions don’t count, even 987 small portions.

I’ve become really entranced with photographing graffiti. Graffiti near Cabbagetown.
That festival is around here somewhere. Just keep walking.
At the Chomp & Stomp.

Last night was the first night alone without Chris since Connor was born. He had to fly up to Albany to do a presentation-on his birthday, much to his delight. I let Connor sleep in the bed with me for a night that saw his best night of sleep possibly ever. He sleeps pretty well anyway, but I don’t think he made a sound or move until 7 am. Every time I woke up I had to make sure he was breathing it was so unnerving. He usually spends some portion of the night talking to himself or kicking his mattress like he’s Jason Statham.

Jason Statham

I guess he was worn out from our long day out Sunday walking the Atlanta Beltline and stopping to grab some food and drinks on the way with friends. But how to spend the evening without Daddy? Chinese delivered to the door and Walking Dead in the dark. Okay that was for me. He was sleeping. I suspect Walking Dead isn’t good for a baby’s development anyway.

Yup, more Atlanta graffiti. Near Old 4th Ward.
From a friend’s place on the beltline.
Arianna entertains Connor after the walk.
Connor seems to have outgrown his older woman, Isabella.

I mentioned a few entries ago that we had gone two days without seeing any eyerolling. We actually went three, almost four, but about an hour before bedtime on the fourth day we fell back into the 1-2 a day routine. So that was a bummer, but hopefully means we’ll see less frequency soon.

It looks like Connor will also have the opportunity to participate in a TSC study in Boston. We got connected through a friend who has a son enrolled and I e-mailed with the genetic counselor over the weekend. We are supposed to talk via phone tomorrow to iron out the details. On one hand I’m excited to have experts that will be keeping an eye on him at another major TSC clinic, and giving us an opportunity to get up to Boston for a change of scenery. Any issues that (hopefully don’t) arise, I will have more brains to pick and connections if other opportunities come about. On the other hand, the purpose of the study is to look at the issues that come about as a result of TSC, particularly autism. They are trying to figure out markers of which kids go on to develop it and which ones don’t. The fact that my child qualifies for this study because he has higher odds of developing autism than the general population terrifies me. Autism terrified me before I even got pregnant, even though I have worked with some kids I really loved that had it. One of my favorite students of all time was diagnosed with Asperger’s, but I still can’t imagine it in my life at home. The things that hang over you because of this disease just absolutely suck. I try to focus on the many amazing people who are living with TSC successfully and taking incredible steps to further research and awareness. Apparently the December issue of Runner’s World is going to feature a teenage runner with TSC. And whatever comes, we’ll deal with it.

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Ordinary Life, Parenting, Tuberous Sclerosis

First Halloween: Check

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I did a bad, bad thing. I went to Target today to see if the leftover Halloween decorations were on sale. Actually, disaster was averted because it had been picked pretty clean. I, the woman who wore the same costume for like six years only to pull out a costume from my middle school days this year, had to fight the temptation to buy three costumes because they were 50 percent off. Fortunately, I needed a bathroom and had Connor with me, as well as a full cart, so I had to rush out. I came away with just this:

Who can resist 50% off?

I also may or may not have been unable to resist the impulse to buy him Santa pajamas. You can prove nothing. Target is evil.

Connor really enjoyed his first actual Halloween. We didn’t do the Trick-or-Treat with baby thing since he weighs 976 pounds. Or 22. Can’t keep that straight. But he took a nice long nap, right through the ringing of the doorbell, shrieks of young children, and me laughing hysterically as two small boys in awesome, if not particularly flexible Lego people costumes hobbled across the yard. I’m worried he’s going to pick up my poor moral character in that I find it hysterical when a kid faceplants in my yard and flails about immobile until Dad comes to the rescue. Connor woke up in time to enjoy his first viewing of It’s the Great Pumpkin, Charlie Brown. Mommy enjoyed her own treat in the form of a Jack and Coke.

I also dressed up for the first time to pass out candy:

The leftover M&Ms have me in a good mood which is good for the pharmacy that provides Connor’s Sabril. Sabril is not available through regular pharmacies. It has to be fedexed to the house. Every time I have had to refill it’s been an ordeal because the prescription kept changing as we sought the ideal dose. Finally, this time was just a simple refill. No changes. Not to be. Not even sure how long I was on hold as I had them seek out the reason our prescription was flagged because supposedly the “directions were not written correctly.” Really? Because they were last month. Turns out some rep was confused because in one place the doctor wrote “at bedtime” and elsewhere “evening.” Ummm….what? I find it irritiating that it would be flagged due to someone’s apparent hangover, but even more annoying that some rep decides to flag it but takes no steps to look into it and clarify. Basically, he  or she left it to be my problem when it came time to refill. Had I not insisted it be looked into while I was on the phone, his refill would still be in limbo.

Obviously all my hopes lie in that Connor’s TSC will be a mild case, but regardless of its course, he will require more medical attention than other children, even if only for the annual monitoring. I’ve come to realize that a significant percentage of my life is going to be dedicated to repeated phone calls, sitting on hold, and writing nasty letters to billing departments because people are idiots.

Parenting, Tuberous Sclerosis

This living one day at a time stuff is for the birds.

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It has been a nice little reprieve the last couple days not seeing any of the eye rolling incidents he’s been experiencing. But I’m not tempting you, Fate. No need to show me who is boss. I know not to celebrate good things. He could have one tomorrow or in 5 minutes, so don’t think I’m getting all cocky and thankful. I know that’s not allowed. Until the neurologist’s office called this morning to verify the  results of the EEG–no hips arrythmia and the only odd activity present is irritation from the surgery (what we already knew)–Chris and I hadn’t even acknowledged out loud the fact that we hadn’t seen any for two days. They remain a mystery until we can catch them on EEG. But the reality is that the EEG also shows a tendency to epilepsy because of the other tubers present. No seizures, just little outputs of activity as if to say, “Screw you. Did you think you’d wake up and TSC would just go away?” That’s TSC. It’s always there. You just don’t know what it will do. I totally understand those parents that enact vigilante justice when someone hurts their kid. If TSC could take human form, I’d stab it to death. Slowly. Only time will tell if epilepsy will be an ongoing battle for him.

The physical therapist came yesterday. Once again, she said he was looking really good. Very interactive, engaged, energetic and much more tolerant of being on his tummy. He’s adding more noises to his repetoire and playing with toys, all in the appropriate window of time…although he likes to push those windows to make Mommy nervous. She is thrilled, as am I, that we are weaning him off the phenobarbital. It’s pretty much the go-to seizure med for babies, but it’s a major suppressant of all activity, and longterm, is connected to cognitive issues. Connor often refuses to look his therapist in the face, even though he will make eye contact and giggle with us, because she is the mean lady that makes him work out for an hour straight. Mommy can be broken in less than hour easy. It’s kind of humorous to watch him swing his head back and forth as she tries to get him to engage with her. He’s not having it. She goes to the right, he goes to the left and vice versa. But she says this is good because he is distinguishing between people he likes and people he doesn’t. We’re really pushing him more to roll over. He can. He has. But he’d rather do this:

Where he started…
A few minutes go by…
Making a break for it!

A breakdown of his meds history:

When he came home we had to give meds 5x a day. It was hell. He was on:

Phenobarbital 2x per day 8am, 8 pm

keppra 2x per day — 8 am, 8 pm

dilantin 3x per day– 6am, 2 pm, 10 pm

I want you to seriously think about that schedule. Seriously imagine having to stop at all those times of day no matter where you are or if he’s sleepy to force him to take some crappy tasting medicine.

Then we weaned him off the dilantin.

He was only on phenobarb and keppra 2x per day for some time, but after surgery we never upped the dose again because we weren’t seeing anything.

Then the infantile spasms started, so we added Sabril (vigabatrin) and clonazepam. And now we are in the process of weaning off the phenobarb. So once we finish weaning, he will be on:

Keppra

clonazepam

Sabril

All two times a day thank God because I don’t think I can mentally handle more than that.

Parenting, Tuberous Sclerosis

We didn’t crush this fundraiser walk so you could be a vegan!

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We’ve recently graduated from simple fruits and vegetables to meats like ham and turkey. Today we tried mac & cheese with veggies. Connor’s enthusiasm has been less than expected for all of these considering how much Korean BBQ and macaroni he consumed as a fetus. Bad grades, rebellious clothing, refusal to do chores, heck, even automobile theft may be par for the parenting course, but if he thinks he’s gonna be some sort of vegan/vegetarian…Not on my watch, sir. Mommy and Daddy love meat far too much.

And now to go back in time to something that really touched me. Connor was born at the end of March, which was the beginning of our journey to figure out this tuberous sclerosis mystery. Imagine going from never having heard of something to learning that a fundraising walk is held annually at a park barely a couple miles from the house you grew up in. We didn’t even have two months from the time he was born until the Atlanta area walk to organize and raise money, but my friend Kate set up the team registration for me since it didn’t take much to trigger my anxiety at that point. The mere logo for the TS Alliance could trigger a tightening in  my chest and lightheaded feeling that would force me off my feet. We have an adorable little TSC bear clad in a TS Alliance shirt. Connor loves it, but I had to turn the shirt inside out at the time. I didn’t think we had much time to raise any money, so we set the team goal at $1,000. Chris’s sister Donna and brother Carey got in touch with friends who owned a t-shirt company and designed a team shirt. As you’ll see below, they chose a color that guaranteed we wouldn’t be missed. Carey provided them for everyone who walked. I was amazed when we had about 30 friends and family walk for him and the team raised over $6,000. Some of my co-workers that walked even wore their team shirts to school to help raise awareness.

Here are some pics from the walk (and if you’re wondering why you don’t see me much, two words. Baby weight.):

Ordinary Life, Parenting, Tuberous Sclerosis

Is Michael Myers in my house?

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We have an eruption. The tooth has made a slight appearance. It’s difficult to catch a glimpse of it though since Connor pretty much always either has his fingers in his mouth or his tongue sticking out. That part of the teething process is charming. Slightly less charming is the “I’m being chased in a darkened parking garage by an axe murderer” shriek he’s adopted over the last few days.  Up until then his new sounds had been grunting and growling, which the pediatrician said is typical of boys. The girls, she said, like to shriek. I’m all for equal opportunity and eliminating gender based stereotypes (except in cases of guys I’ve dated), but at 5 am I don’t want to hear the Halloween soundtrack coming out of his room. His appetite has also decreased significantly, but I’m pretty sure my 7-month-old who is wearing 12-18 month clothing is gonna be alright. Losing a little weight will probably help him with his motor skills anyway, since the physical therapist thinks his rapid weight gain is a factor in his slight motor delays.

I’d post a picture of the tooth, but at this point I’m afraid he’ll chew up my phone.

We have a feeling he might just bypass crawling since that doesn’t come easy to chunky babies and he is pretty strong when you put him in a standing position. Plus, his answer to tummy time is to conk out after a couple minutes because he doesn’t like to work. He’s like his mommy. You want me to do what? Yard work?…mommy crawls behind sweaters hanging in closet and passes out. He might actually just resort to doing the backstroke on land. Lately he’s been scootching himself  several inches up when lying on the changing table and in the crib. So frankly, he probably considers it silly to go to all the effort of turning himself over.

I spent about 3 hours sleeping on the floor with him this morning when his shrieking started up. I’ve done that quite a bit when he gets loud enough. He’s not crying, but proximity to one of us usually quietens him down. So it’s either one of us on the floor, or Chris on the couch and him in the bed with me. Bet the baby book writers would love that. Way to teach him how to get what he wants instead of just putting himself back to sleep. But since he sleeps pretty well most of the time, we don’t care, and they aren’t here to assist me when I stumble into a wall because I can barely open my eyes. I barely consult baby books anymore because the normal every day stuff doesn’t phase me now. So he may not have the perfect nap schedule or all those other details that fill 500 page books. He’s a happy baby.

Besides, he’s gonna provide the sound effects for the trick or treaters.

Ordinary Life, Parenting

Just because I wear the same costume over and over doesn’t mean I don’t like Halloween…

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Don’t think I don’t know what you’re thinking. Horrible mother! Horrible! Why is she doing that to him? Please. This kid was ticked that his pumpkin costume didn’t come with a machete. His only response to Creepy McPumpkinhead was to try and shove him in his mouth, presumably to keep company with the two teeth that are about to burst out of his gums Alien-style.

Connor also attended his first Halloween party yesterday, which was also the day of his 7-month birthday. It was thrown by my friend Claudia. Claudia is the reason Connor will eventually grow to resent me and think I’m totally lame because she loves to throw theme parties and has the inflatables rental place on speed dial. I’m gonna have to rent Cirque du Soleil for his birthday to compete. And the entire staff at Nickelodeon. Either that or we’ll just pretend he has the same birthday as her daughter Isabella and tell him the party is for him. Since it was a kids’ party, I was unable to wear the French maid costume I bought in, I don’t know, 2004? Fortunately, my mother keeps everything, so I wore my witch outfit from middle school instead. Look, I just prefer decorating my child and house to decorating myself.

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With Isabella at the party

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With Daddy at the party .                          My cats don’t cooperate, so I live through others…

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With “Uncle” Damien (costume got a little hot…)      With Ugly Betty

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Mommy found a cool wig for $5.99 the day AFTER the party….

Connor had physical therapy this morning and she continues to be very happy with him. We’ve been focusing on strengthening his core, but now we’re shifting to mobility by working with him in positions that will make sure he gets comfortable transitioning into crawling and standing positions. His independent sitting has improved since she saw him just last week.

And as I type this, I look down to see…

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I give up. I can’t keep anything on his feet.

Parenting, Tuberous Sclerosis

Infantile spasms–my unanswered prayer

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You never know when or if something might spring up with TSC. We came so close after surgery to having some normalcy, but it wasn’t to be just yet. About a month after surgery, on Wednesday August 22, Connor had a follow up EEG. We hadn’t seen any seizures since surgery, and now we would see how he was doing as far as the subclinical seizures that can’t be seen to the naked eye. The neurologist would read the EEG and call us with the results within a week. But on Friday morning, August 24, the moment that had lost me countless hours of sleep and stress happened. We saw his first infantile spasms. I don’t even know how much desperate begging and praying I had done that he wouldn’t develop this complication. Infantile spasms are extremely rare in the general population, but kids with TSC are at a higher risk of developing them. I had watched countless YouTube videos other parents had loaded to help others with identification, so that I would be sure if the moment came. But why so much more concern over this seizure type than what he had before? IS can cause brain damage, prevent children from reaching milestones, and even cause regression. Some people had reported their babies had regressed to a newborn state after developing these, losing any milestones they had achieved.

I had obsessed and obsessed over how things would go when these started. How long would it take to get treatment rolling? How many would he have before treatment started to work? What damage would be done between the moment we first saw them and the moment treatment became effective? One thing I didn’t worry about was whether the drug I knew he would get if this happened, Sabril (vigabatrin). would work. I’d heard amazing things about its effectiveness. I’d even obsessed over whether they would start on a Friday after the neurologist’s office closed further complicating getting treatment started. If these had come out of nowhere, meaning we knew nothing of his TSC, these would warrant going to the ER to get treatment started. But since we already had a plan in place and a neurology team, we were told just to call the office and we’d get the ball rolling. So naturally, they started on a Friday. And the office closes early on Fridays. Did I  mention I had a full blown anxiety attack on top of everything else? Because people were right. They said you’d know the spasms when you saw them. And I did.

Click to see spasms before starting Sabril:

http://youtu.be/VPpuAvNJQ30

It actually worked out well that the office was closed. Instead of going through medical assistants, I was able to directly page the doctor on call. I described what I saw and I could tell my description concerned him. They hadn’t yet reviewed his EEG, so he said he would look at that and call us back shortly. Confirmed. His EEG showed hipsarrhythmia, the scrambled pattern of brainwaves that often (but not always) accompany IS. They called in a prescription for Klonipin (clonazepam) for the weekend to help calm them, and we had the first appointment Monday morning to get him on Sabril. On the bright side, the surgery had been a success. No complex partial seizure activity. We should have been able to celebrate, but I try not to be bitter. Try.

It was a long weekend in which we saw 3-4 clusters a day (his worst day having 8). A cluster is a series of spasms. Monday morning we signed our life away on paperwork due to the fact that a possible side effect of Sabril is damage to or loss of peripheral vision. But as Wendi (the fellow TSC mom who has been there to help us and answer our questions through all this) said, “What good is 20/20 vision if their brain is mush?” I haven’t come across any stories yet about children experiencing this so hopefully he won’t either. Because of the risk, he has to undergo eye exams every three months as a precaution, including an ERG (electroretinography) at Scottish Rite. He has to be sedated and electrodes are used to check his vision. Can nothing be simple? You can’t even get Sabril at a regular pharmacy. It has to be Fedexed to your house.

After about a week and a half we seemed to be in the clear. We went three days with no spasms. Then the eye rolling started. It is now mid October and we are still trying to get a handle on the eye rolling. Presumably, they are milder spasms that are breaking through on the Sabril, but he’s doing well and continues to progress. While the full spasms were going on, he was quieter and it was harder to get a laugh, but he’s back to his giggly self. He underwent an 8-hour EEG to try and determine what was going on. Naturally, he didn’t have a single incident for the entirety of the test. Nope, not until we were in the car on the way home. I was so frustrated I might have driven my car into a tree had Connor not been in the car. But the EEG came back otherwise greatly improved, the hipsarrythmia having cleared up. So this Wednesday it’s back to the neurologist for an hour EEG (yeah right, like we’ll get lucky enough for something to happen in that small window) and an appointment to discuss his progress. I’ve been a little bit crushed that Sabril wasn’t the 100 percent miracle cure it has been for many others. I truly thought it would knock them out completely within a few days, so that we’re still seeing anything has been a bit crushing. That being said, it has immensely improved the situation and allowed him to continue on his developmental path.

What we’re currently seeing:

http://www.youtube.com/watch?v=qttWpEA3UYg&feature=youtu.be