Excellent

No hypsarrythmia! We didn’t catch the head drops we were concerned about, but his EEG is so clear that our neurologist suggests we head out later this afternoon. His opinion was that even if he was having some sort of seizures, without hypsarrythmia, we shouldn’t be concerned about their affecting his development.

He said we should keep at the new dosage because it seems to be working but we now have a huge weight off our shoulders in regards to anything too damaging to his little brain. We didn’t catch the shaking/jerking episode he had in his sleep from the night before, but we haven’t seen it since. Either the Sabril is taking effect or he’s having sleep hypnic jerks, which are benign.

Also for any future head drops, we should bring him in for another EEG. But in the meantime, we are doing well, on the right track, and will continue to focus on his development. This is great news! Thanks for everyone’s support and prayers!

Best birthday present I can imagine.

(For more info about EEGs, see our EEGs & IS page.)

Arrived/admitted at UCSF for long term EEG

Everything went well on arrival and admission. UCSF did not have Sabril on hand (a little bit surprising there, but not too much). We were instructed to bring ours anyways and they are using it.

Some entertainment:

Mommy brought Kaleb’s taurine supplement. But the bottle is big, so she just brought ‘some’. They don’t have any on hand in their pharmacy, so the doctor on duty asked to see ours. We came prepared. Really prepared. So mommy pulls out a plastic baggie with a fine white powder and a half-teaspoon. Doctor raises her eyebrows.

More Seizures

Just had a cluster of seizures for several minutes while asleep. He was visibly upset and whimpering in between each seizure throughout the whole thing and it was difficult to wake him or get his attention. It doesn’t look exactly like IS anymore but kind of similar at the same time. Maybe other seizure types? The EEG tomorrow will hopefully tell us more.

Maybe not so surprising

In the last four weeks, Kaleb’s weight has increased by 15% (he’s always been a big baby).   By increasing the dosage as we have, the Sabril/Vigabatrin concentration in his body will be back to where it was when he last stabilized.  (So if he stabilizes now, that means he’s been stable at a consistent ‘milligrams of Sabril per Kaleb-pound’ since his previous increase a bit over three weeks ago.)

And they’re back…

The head drops. I think we saw them yesterday too but we weren’t too sure. Maybe part of it was wishful thinking. We also think he’s adapted to them in a way…trying to keep his head down to avoid the discomfort and also not crying immediately afterwards anymore. But today, the dead giveaway was that he wanted to sleep immediately afterwards (he always does after a seizure) and he had been awake for only 1.5hrs from a long morning nap until noon already.

I think we know some of his signs when/before seizure activity starts. Aside from the suspicious activities, they are: waking up and crying a lot through the night (we had thought teething at first) or being very fussy (he’s generally very happy all the time), sleeping a lot during the day (seizure activity is draining), his shallow cough and grunting/this weird “aahhhhhhh” sound he makes, etc. This also explains the regression we’ve been seeing (we knew there must be a reason…that’s why we asked for the EEG). But it may not be necessary to check the brain waves for seizure activity if we’re seeing the seizures already in person, so the EEG would just most likely just be delayed for another 2 weeks.

Poor little guy. I don’t know what he’s feeling but I can tell that it’s probably not pleasant, especially given that he’s been crying/fussing more recently, especially odd after sleeping so much already. We’re increasing his dosage again. We’re hoping to talk to the neurologist about adding something else to the mix. Maybe Vitamin B6, maybe prednisone (but more steroids mean more compromised immune system), maybe ketogenic diet if he’s having other seizure types too…we’ll have to see.

Worried

Kaleb seems to have experienced some regression for the past 3 days and is having difficulty rolling over and keeping his head up again. He’s 8 months old now and we haven’t seen him have this much difficulty rolling over since his first seizure 2.5 months ago. And it just suddenly happened overnight. For the first day or two, we were hoping it was just because he was tired, but at this point, we’re very worried, especially since he’s had very suspicious activity recently, but nothing that looks like the infantile spasms that he used to have–perhaps he has other types of seizures? Or maybe the hypsarrhythmia came back? Or is it just neurological issues due to his PVL brain injury? We brought it to the neurologist’s attention after the first day and we are now scheduled for our first 24hr EEG (which requires overnight hospital stay for up to 3 days) next Tuesday. We are hoping for some answers soon.

Early Start Update

Kaleb’s report from the state’s early intervention evaluation came back. He was determined to be at a 4-5 month level, which is about 25-45% below his peers, in all areas except in social skills, which was at a 6 month level and is one of his greatest strengths (YAY!).

He started bananas two days ago. Solids are going well, but we’re still trying to get him to open his mouth for the spoon. That is something that is in Kaleb’s development plan with the Early Start program, but in the meantime we are trying to motivate him by doing the following: eating every meal with us at the same time, having B show him how it’s done (since he’s not imitating us when we open our mouths), brushing the spoon against his lower lip and pushing it down on his tongue, cheering for him when he does open his mouth.

We will have the state’s early intervention specialist come to our house every week who will work with us in all the developmental areas. We should be starting sometime within the next couple of weeks. We can’t wait and are looking forward to helping Kaleb progress. We’re still praying that the seizures will continue to stay away or it will reverse all the hard work we have been doing in a matter of minutes. We also continue to pray for all the little ones out there suffering from seizures, as well as their families. And we continue to hope for a cure.