Seizure Friday

Oliver had a seizure this morning about 40 minutes after I dropped him off at daycare. But it was the first one in a week, so that's pretty good I guess?

Dropped our clonazepam night dose to 1 pill per day on Wednesday this week (1/2 a pill at night plus 1/2 a pill in the mornings)...perhaps it's starting to take a toll on him...

not much else to report.

Therapy

We started Oliver's Occupational Therapy last night. The therapist was really nice and Oliver seemed to like her. It's always hard to tell but she really had him smiling and trying to laugh a couple times. He was moving so much. She said it's a good sign that he's always on the move and trying to do stuff even if he can't yet. Hopefully once we get him off the Clonazepam we will see more progress. Tomorrow night we drop down to half a night pill. He'll only be on one pill a day for a week, then half a pill just at night for a week. Then...off. Hopefully.

We have a 2nd opinion consultation next Friday with the Epilepsy team at our hospital. I just think it's important to have someone else weigh in on his course of treatment to make sure we're on the right track. I am glad they could fit us in so quickly and hope the appointment is encouraging. After the appointment we will start our Lollapalooza weekend. Jason and I have 3 day passes and we'll be going down to Grant park each day to listen to some great bands. Oliver and Tobin will be hanging with Grandma Patti and Papa Frank. It will be nice to have a little break before our big Mayo trip. Hoping this week goes fast as the weekends are hectic and chaotic but I love spending time with my boys and can't get enough of Oliver's little kissable cheeks.

Hoping August is a big month for us....

dreading the phone calls

Everytime my phone rings now I start breathing heavy and get really sick feeling, as soon as I see on the caller ID that the call is coming from daycare I know...it's another seizure. The hardest part is answering the phone and being greeted by Oliver's screams. It breaks my heart every time. Not only is he having a seizure, but I can't be there to hold him while he goes through it. I just hung up with our daycare director. She hates making the calls, and I can hear it in her voice whenever I answer the phone. Now I sit here and wonder, when is the next seizure coming and will I be there to hold him next time?

The seizures are different now. The spasms are only on the right side of the body. This leads me to believe that they are originating or affecting the left side of his brain. This could mean that there is something there causing the seizures and maybe a surgery would be a possibility? or maybe not...I've left a message with the nurses at our dr's office to ask about this. If only I could actually speak TO the neurologist. It's hard when the nurses call back, give you a brief one sentence answer and then if you ask more questions they have to send it in a note to the dr. Maybe he could call me back just once?

We started weaning the Clonazepam yesterday since it doesn't seem to be stopping the seizures anymore and (in my opinion) it's really hurting Oliver's development as he has been extra floppy on it. But the worst part of all is that he is still having seizures despite being on TWO anti-seizure medications. It doesn't seem that we'll ever gain control of these seizures. Maybe if we increased the dose of both of his medications. but then what? he sleeps all the time? I know some kids have seizures daily and still go on to develop at their own pace and have great little lives. But Oliver isn't even developing at all. I would settle for slow development. But at this point, he's 9 months old and can't hold his head up yet. Other babies are crawling and standing and babbling. He is just our little lump. I wonder how much his development would be slowed by no medication? Between the seizures and the CDG he is really in bad shape, yet physically super healthy. Organ function is great, he is growing taller and getting heavier, and he looks like a normal baby when laying down next to any other baby. But something isn't right. We can't get control of these seizures. I just don't know if anything is going to work, or if there is anyone out there who cares enough AND has the medical knowledge to make a reasonable suggestion. Because everything we've tried so far has failed. It's hard to be patient all the time, waiting for the dr to call back, waiting for the dr to formulate the next step in Oliver's treatment, waiting to go see a new doctor at the mayo clinic. Waiting waiting waiting. I'm tired of it.

ERG

We had our ERG this morning. As scary as it looks, we were reassured it's actually painless for the boy, and believe it or not, he's sound asleep in this picture. So we met with the nurse, got some drops and waited 45 minutes while his eyes dilated. We went down to the coffee shop and Oliver had a bottle. We saw one of the hematologists we work with and then , on our way back up to the opthamology floor for our ERG we bumped into our pediatrician, who was doing his rounds at the hospital. Sad when a large hospital becomes such a small world that you see many familiar faces in one visit. We met with our opthamologist and then went in for the ERG. The procedure was very easy, Oliver was asleep the whole time. He complained just a bit when she put the numbing drops in his eyes (they sting a bit) but then went back to sleep and cooperated for the whole test. The results were good. So far...retinal function appears to be normal. They
noticed a bit of low numbers during the "lights on" portion but think that was because he was asleep and his eyes were sort of rolled upward at the time. His numbers during the "lights out" portion were perfectly normal so the dr thinks it was just a fluke and not an indicator of any issue. So that will serve as our baseline ERG and we will do another one in 6 months. The purpose of this test is to measure his retinal function and keep an eye on it (pun intended) while he is on Vigabatrin, since Vigab can have the tendency to reduce retinal function and cause tunnelvision when taken for a long time at a high dose.

After the ERG I had to get to the office for a meeting so Jason is spending the rest of the day with the tater tot. Oliver has his 9 month checkup at 2pm which should be fairly uneventful. So we should be done with appointments until our Mayo trip in August!

We are still waiting to hear from neurology about Oliver's most recent seizures to see what our med plans are and if we are going to continue with the plan to decrease clonazepam or if we are going to switch to a "plan b". Hopefully whatever we do gives the boy a little relief from the seizures!

He had his best night's sleep last night, in , well....ever! He was asleep by 9pm and we heard him once at 4:45am but didn't go get him. He was just kind of talking to himself and then put himself back to sleep. At 7am we woke him to give him his meds...I wonder how much longer he would have kept sleeping?!?!?! Hopefully that's a new pattern that will stick around for awhile :)

Grandma Eunice and Papa Bill fly in tonight at 8pm and we're very excited to spend some time with them, and to have the chance to spend some alone time with Tobin while Oliver hangs inside hiding from the heat. Both of his seizures this week happened after he had been out in the heat for a bit so I am hoping if we keep him in the a/c consistently ...maybe he won't have anymore? That would be good and bad. Bad because it would mean that we can't all go do outside stuff as a family until the heat settles down some, but good if it keeps him from having seizures.

Not much else new around here, a nice break from dr visits for Oliver, Tobin is having a great summer playing with friends and going to various pools and parks, and Jason and I are just slowly trying to manage everything that comes along with caring for a very special little baby while balancing everything else in our lives.

so confused

So Oliver has seemed to be feeling better after his sore throat and low fever and he went a few days without seizures...from June 29 to July 4. He had a seizure about an hour after we got back from fireworks and we thought it was maybe because we were sitting outside for so long and it was warm or something. I was hoping it was just a fluke, but he had another seizure today at daycare, so about 2 - 3 days apart. It could be that he still has a stuffy nose, or is in a state of constant teething at 9 months old. Or maybe the medication is the problem. We haven't even started our wean because our neuro said to wait a week and we keep calling back reporting seizures and being told to wait one more week. At this point I don't know if a wean is a good idea...or maybe he is already kind of weaning since he has gained weight and been on the med for awhile and his body could be getting used to it. It really seems like his body gets used to a medication and finds a way around it to have seizures. which is scary, because eventually we'll run out of medication. Maybe it's time to try the keto diet?

I would love to know what his EEG said last time. The dr said it showed improvement but I assume he still has the hyps...and what happens when that is gone and he's still having seizures? This is all such a mystery and it just plain sucks!

In the meantime he's been doing well otherwise. He has more awake/alert moments and seems to be laughing/smiling big time when Jason bounces him up and down. Who knew he liked to bounce? I wonder if taking him off the clonazepam would allow him to reach a milestone? My goals is for him to hold his head up by his first birthday but it doesn't seem likely with the clonazepam. At the same time, I'm tempted to increase the dose to get the seizures to stop but then he'll be even more addicted!

We have speech therapy starting next monday, and OT starting at the end of the month so at least we're moving along with Early Intervention. Hopefully they can find a good PT solution for us soon.