Category Archives: Tuberous Sclerosis

Does insurance cover anger management?

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?

Well, I don’t like talking on the phone either, but IT’S YOUR JOB.

You might be wondering if we got Connor’s 3-day EEG scheduled. The answer would be no. Because, you see, anytime you schedule stuff hospital related, it doesn’t work like a doctor’s office where you get transferred to a person who schedules you on the spot. No. You leave voicemails for people who are supposed to call you back and don’t. They never do. And I’m getting really, really sick of it. The neurologist sent the order in yesterday morning, and the hospital is supposed to call me. By the end of business that day, I was quite antsy so I tracked down the department number on their website and got connected to the appropriate person. I got her voicemail (story of my life) which stated she was out of the office that day, but also explicitly stated that all messages left that day would be returned the next. Well, it’s 6 p.m. the “next” day and nothing. So I will be calling again first thing in the morning, at which time I expect to address a voicemail again, then spend the rest of the day seething. It’s no little thing trying to squeeze in three days in the hospital at the holidays! I’m stressing over two things. First, what if they don’t even have any openings for a ludicrous amount of time, like until next year? And then, what if the opening they do have screws up our plans this month? Not to mention it always takes forever to get the results, so the sooner the test is done, the sooner we can start the next phase of waiting. Waiting. Waiting. Waiting.

To top it off, I realized today that I have hung up on countless phone calls from the pharmacy that provides Connor’s Sabril. I’ve complained here before about my issues with them, so you might wonder why I would be hanging up on them repeatedly. Well, dear reader, this is why. When I call them I use an 800 number. When they call me it’s a 901 area code, Memphis number. But I only recently made this connection because every time I have answered the phone, nobody was there. It begins to ring on their end to connect me to someone, and then hold music begins to play. There is NO identifying information, even a recording, to inform you who is calling. Surprise! Like any normal person, I assumed this was some sort of telemarketing robo call. So I always hung up. Until I didn’t answer. Today I stayed on and was on hold for several minutes before someone came on identifying who it was. Great business model. Really.

I suppose I should bring something lighter in to close. I’ve figured out Connor’s favorite food finally. Of all things, it’s a combination of prunes and apples. PRUNES and apples. And you know what. It actually smells and tastes pretty good. Who knew? That might become his only solid if he keeps swinging his head back and forth to avoid the spoon like he does with some of the other pantry items.

With what these hospitals charge, there should be a swim up bar.

Arrrrgh! NONONONONONONO! So we requested an ambulatory (take home) 24-hour EEG from our neurologist so we could figure out what these eye rolling incidents are since they don’t seem to want to stop and they manage to dodge those office hours EEGs, but he feels given Connor’s age, that a 3-day video EEG would be better. So back to Scottish Rite we go. Ahhhhhh. Shoot me. Shoot me. Shoot me. An EEG at home by the light of the Christmas tree doesn’t seem so bad. Three days in a hospital? No. More. Hospital. I’m taking liquor and I dare the nurses to try and stop me. Please, please, don’t let them call and tell me they only have dates during the time we are supposed to be in Florida, or I’m going down there anyway and feeding myself to the 8-foot alligator that likes to sun itself outside my in-laws’ lanai.

In keeping with the theme of the day, my morning went like this. Pack up 800 pound 22 pound baby and head out for 8:30 doctor’s appointment. Mom and baby are right on time, ten minutes early actually, as we triumphantly stride up to the desk, only to be told I’m not on the schedule. Oh that’s right. The dermatologist is at 2:10. I should be checking in for my physical at my general practitioner right now. Somehow, depsite the fact that I’m starving due to “no food after midnight” I still managed to confuse the appointments. Fortunately, my doctors are only 5 minutes apart on the same road. Well, fortunate if you’re not me, frazzled and with directional dyslexia. Nonetheless, I made it but a few minutes late so I could have needles jabbed in my arm. Baby guilt once again made me get the flu shot, the second of my lifetime. I got one last year so I wouldn’t break the fetus. I got one this year so I wouldn’t break the baby. Hey, Hubby, she says you have to get one, too! Haha! I should start snotting and feeling like crap shortly. The best part is that I get to go back this afternoon to face the ladies that saw me make an ass of myself this morning.

My husband and I recently got hooked on Scrabble by my parents. We played at the previously blogged about cabin with no cable where family bonding and quality time was forced upon us. Chris purchased Scrabble at Target and we also downloaded a Scrabble app on the iPad that let’s you play an opponent or the computer. On Sunday, Chris traveled to Pittsburgh for business where he spent some time honing his skills against the computer because it’s not enough that I can’t do math. He must also destroy me in Scrabble when words are all I have. Would you believe the computer played the word “tuber”? No, really. Freakin’ “tuber”. What are the odds of that? Perhaps the same as having TSC?

Deep breath. Okay. Positive thinking. The hospital will call shortly. They will have lots of availability. They will get us in quickly. It will not interfere with our trip like the last EEG, when we had to reschedule our vacation. I believe in Santa. I should probably get to eating now…I just tried to bite the cat.

What are all these baby torture devices?

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!

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

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.

Just a few things to share…

Beautiful day today. Makes me feel guilty that I want to lie around and have a Dexter marathon.

Just so you know, November is Epilepsy Awareness Month. Rock some purple.

I have to share this super cute video of Connor. Almost makes me want to get a dog…until I think about the work involved. Our two cats are lucky to get fed at this point. Just kidding. We love them but they don’t offer Connor anywhere near as much enjoyment as his cousin’s dog, Cleo…

Click here to see the you tube video

This morning Connor discovered that toes are more than just toys. They are tasty treats! Good thing my foot phobia doesn’t extend to baby feet.

Munch munch yum.

And finally, on p. 52 of December’s Runner’s World, they feature  teen runner Casey Revman, who has TSC. Great article.

December’s Runners World p. 52

Boston or bust!

I just went to pick up Connor, and as I hoisted this 7.5 month old that wears 12-18 month clothing, it struck me. As his body weight succumbed to gravity and my hands pushed up into his armpits, I realized how much more tightly his arms were clamped down over my hands, that his shoulders and arms weren’t doing that slight slide upward that used to force me to clamp down a little tighter. His doctors and physical therapist have mentioned his improvement in tone, but today’s realization makes me realize how far he has come with surgery. His tone was not so low that he was diagnosed with floppy baby syndrome or anything, but neurological issues can cause somewhat low tone which means it takes him a little longer to master some physical activities. He has to build more strength first when doing something new. While his degree of low tone wasn’t expected to be  problematic long term, I love to see these little improvements.

He’s also loving his feet these days!

Naked baby loves his toes!

I also spoke with the people doing the study in Boston and it looks like we will be traveling in early January for our first visit. We ended up not qualifying for the initial study we thought we would take part in because his brain surgery disqualified him. Instead they referred us to another TSC study that didn’t have that as a disqualifier, but has similar goals. We have the option to extend our stay in Boston and have a  little mini-vacay as long as we pay for any additional hotel nights. But something tells me we may bypass that in the frigid month of January and wait until our next trip at 12 months old.

Connor will go to Boston at

9 months

12 months

18 months

24 months

36 months

I have a hard time not getting violent with TSA when I fly alone. This oughtta be good with a baby. If I end up in prison, tell Connor I love him.

Changing leaves and sharp teeth

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.

First Halloween: Check

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.

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

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.