Annual Eye Exam

Today Bug had her annual eye exam with her neuro-opthomologist. Well, I guess I shouldn't say "annual" because she sees him 2-3 times a year but only once a year does he dilate her eyes and do the full prescription check and that was today's visit.

I'll keep this pretty short - mostly because it's late and I'm exhausted, but also because I didn't take notebook like I usually do so I have already forgotten alot of the big words he used!

We decided that we do not need to do another ERG on her eyes. Bug had an ERG last March while she was still taking Sabril/Vigabatrin. The ERG is where they put her under anethesia and then put wierd contacts with little probs on them onto her eyes and do a series of tests to see how her eyes respond and how all the little things in the eyes are working. Her last ERG showed that there was a depletion of the rods in her eyes but that the cones were fine.

We chose not to do another ERG because either way, improvement or worsening, there's nothing we can do. If we were still on Sabril and the next ERG showed worsening then all we would do is get off the Sabril, but she's already off it. The neuro-opt also explained that a lot of children with CVI and neuro issues will have some sort of depletion in rods and/or cones that will improve on it's own as they age. He said that if we really want the peace of mind the ERG will tell us what's going on whether it's better or worse but it's not necessary for her treatment.

He said pros are that we'll know either way, and cons are that we have the risk that goes along with putting her under anethesia and how that always brings on more seizures throughout the day after the test, too. And I guess another con is that it won't change treatment. Then he gave us a moment to discuss it and said that he fully supported either decision we make. Then when he came back we told him we'd like to not do the ERG and we like the option that if we change our mind down the road then we just have to call the office and he'll get it scheduled.

Wow, this is longer than I thought it would be, I guess I'm remembering more than I thought.

Anyway, her prescription is the same as last time but her astigmatism has improved very slightly so the axis is a little different so she received a new prescription afterall. I'm excited to get her some cute new glasses :)

After checking her eyes he said that he agrees with our decision on the ERG because her eyes are not any worse than last time and her tracking, etc. is much better than it used to be :)

This picture is from a year ago when she first started wearing glasses

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Bug's current medications & control:

• Ketogenic Diet 3.5:1 ratio
• Onfi/Clobazam, 10mg: 1 pill 3 times a day
• Vimpat
• Lamictal, 25mg: 2 pills twice a day - weaning up

Unfortunately, Bug's seizures have picked up since my last post to 2-5 seizures a day, they are happening at night after she falls asleep. She will occasionally have one during the day while she's awake. She has not been napping as a side effect of going up on Lamictal. We hope to get naps back after she has stabilized on the full dose next month.

Neuro Check Up

Still no results, the neuro said it could be more like 4-8 weeks :(
Yesterday Bug had a regular check up with her pediatric neurologist, Dr. Coleman. We basically just discussed the short term plan of action which is this:

• Continue weaning up on Lamictal as previously discussed with Dr. Ng until we get to the full dose. She'll be on the full dose in a month, we are to increase the dose each week on Tuesday.
• Hold off on the Vimpat weaning until next Tuesday when she gets to 1 Lamictal pill in the morning and 2 Lamictal pills at night. So on that day we'll go down on Vimpat to 1/2 pill twice a day.
• Lower Ketogenic Diet ratio from 4:1 to 3.5:1 to help GI/reflux issues.

The other main topic of the visit was her EEG from last week. He said that her sleeping background is normal other than a few hitches that could lead to seizures but don't. There was no hypsarrhythmia!! The hypsarrhythmia is the infantile/epileptic spasms reading. Almost a year ago is when her epileptic spasms began (a month after starting the Keto Diet) and the spasms were somewhat controlled when we started Sabril (Vigabatrin) and have been improving since and now they're gone!

Her current seizure type is still the Tonic Seizure that starts on the left side but it is now generalizing to the entire brain during the full arrest. Her body tenses up, she rolls her eyes to the left and her body curls in. She sometimes holds her breath for 3-10 seconds at the beginning of the seizure and then has labored breathing until it's over. She is usually calm afterward and if it happens in the middle of the night she just goes right back to sleep the majority of the time. She is such a strong girl, my Bug.

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Bug's current medications & control:

• Ketogenic Diet 4:1 ratio - soon to be lowered
• Onfi/Clobazam, 10mg: 1 pill 3 times a day
• Vimpat, 50mg: 1/2 pill morning, full pill at night
• Lamictal, 25mg: 1 pill twice a day

Buggie is currently down to 1-2 seizures a day, they are happening at night after she falls asleep. Within the last week she has had one seizure during the day and it was when she snoozed for about 20 minutes. She has not been napping as a side effect of going up on Lamictal. We hope to get naps back after she has stabilized on the full dose next month.

Whirlwind of 2 Weeks

Nope. No diagnosis results yet. Just filling my time until it arrives in the mail. I've literally been checking the mailbox several times a day. I even check it again once after I've collected the delivered mail just in case I missed it earlier or maybe a different mailman brought it later. Logically I know it's not the case but I can't help it, I want the results yesterday!

Anyway, last week was pretty bad and kept me on my toes. Rayleigh Bug had gastritis again. She was throwing up at least once a day and her burps smelled like acid. We saw her pediatrician and she told us to give Bug 2 Prevacid a day instead of just one for the rest of week to control the acids. This helped almost instantly but then over the weekend we tried to go back to just 1 Prevacid like she said and the acid burps came back and then last night a little spit up so we're doing 2 Prevacid today. I'm waiting to hear back from her dietitian to see if we can go down on her Ketogenic Diet ratio to 3.75:1 or 3.5:1. She is currently on the highest ratio of 4:1. For those of you not familiar with the diet, the ratio means 4 times the amount of fat over the amount of carbs+protein combined.

This is her second time having gastritis since being on the 4:1 ratio. Plus we didn't see a noteworthy improvement of seizure control when we raised the ratio from 3.5:1 to 4:1.

This this Monday little Miss Bug had an EEG. Which means we had to sleep deprive her the night before. They say for 2 year olds that she can only have 3 hours of sleep the night before and only in the middle of the night. The EEG was at 12:30 with check in at noon. It took 2 hours just to get her fully awake - it came to the point where we had to just strap her into her bath seat and shower her :( but it worked with very little traumatization. And we were able to keep her awake fairly easy and right around 11:30 she started acting very sleepy and then at noon while we were checking in she was falling asleep so we hurried upstairs and they showed us the room and she fell asleep within 2 minutes of laying down! The EEG techs were impressed!

They don't require you to sleep deprive the children for the sole purpose that they will sleep during the EEG. While they do require most of the test to be done during sleeping, sleep deprivation makes the neuro issues more apparent and more likely to occur during the EEG. When she's napping she doesn't normally have a seizure but because of the sleep deprivation she did have one for the EEG so they were able to capture that activity. We see her neuro Monday to get results and talk about the meds.

                                                          
Current medications she's on: Ketogenic Diet 4:1, Vimpat, 50mg 1 pill twice a day, Clobozam/Onfi 10mg, 1 pill 3 times a day, Lamictal, 25mg, 1/2 pill twice a day.

Seizure control: Bug is having 2-5 seizures a day, mostly over night during her sleep. Partial seizures, wakes up, tenses, labored breathing, sometimes twitches, then she goes back to sleep.