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:
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!
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!”
- Medicine medley (trickycustomer.com)
- Why our American Medical System is broken. (phoebeholmes.com)
- The Cure (tsmum.wordpress.com)
7 thoughts on “Remember when I gloated that we were done with vigabatrin? Oops.”
Oh. I’m sorry. I know how disappointed you must feel. I was hoping the Onfi would be the magic pill for the little cutie pie. =(
It’s definitely a bummer, but after all these seizures, if we can get them stopped again, I will have a renewed appreciation for vigabatrin 🙂 Bethany is on Onfi isn’t she?
I didn’t realize Connor was on Keppra too? Did that come about from his first surgery?
Vigabatrin has a unique mechanism of action, and its not a bad drug. With its miracle potential comes the risk you describe. But you have been through the first year or so (through the first 3kg cumalitive dose), with no indications of vision problems right?
Don’t forget, his little brain is growing and changing, so there is no such thing as ‘steady state’ for the next couple of years. Some changes in seizure characteristics might have nothing to do with the meds.
You are doing a great job managing all of this.
Extra prayers for your family and Connor coming your way.
Hi Ken! Sorry I’m always so bad about replying! I appreciated your e-mail, I’ve just been crazy busy. Nope, no vision problems to date–so I’m happy to use whatever works. REally my biggest complaint is that it is such a hassle of a drug. The constant additional eye appts and everything, but whatever it takes right?!
Oh…Keppra. Yep that was the second drug added after his seizures started at birth and the phenabarb failed to stop them alone. By the time he went home, he was on phenabarb, keppra, and dilantin. Keppra has always been there, so hard to say what or if it’s doing anything these days.
Crushing Vigabatrin and mixing it with applesauce worked for us:)
Hi Liz, That’s a good idea. Connor actually currently on the packets that mix with water and thank god we are actually able to give them with little problem, but it will be interesting when he gets to the age where he transitions to pills 🙂