So in short, Trileptal is no longer working to the potential we expected. Rayleigh is on 2ml Trileptal 3x a day and 1 pill of Clobazam in the morning and 1.5 pill of Clobazam at night. She continues to experience 1-2 seizures a day.
We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.
Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.
There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.
We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.
Today Rayleigh saw a pediatric neuro opthomologist. In short, his job is to link any eye problems to neurological issues. There are only a couple in our state so we have had this in our calendar for a while now. Previously, we had been excited and ready for the day to arrive, but all this week I just got more and more nervous! You just never want anything to be wrong with your child, and on the flip side, you also want to be able to fix whatever is wrong!
So we get there and the technician takes us back to the exam room and asks a few questions (was she full term?, what concerns do you have?, etc) and she starts some small tests on Bug. For instance, she has a rectangular board that is half painted solid gray and the other half has black and white contrast stripes. Rayleigh Bug had just woken up from a nap and wasn't participating in this at all. Then the technician pulls out this large spinning wheel and the entire thing is black and white stripes. Bug would look at it and look away. I started getting nervous again for my baby girl :(
Then Dr. Mike comes in and does the same tests and uses a light also. Then he and a nurse get some drops in Bug's eyes to dilate them. After about 20 minutes her eyes are dilated and we go back to the exam room to see Dr. Mike. He looks in her eyes with a light and he held little glasses lenses up to her eyes.
Dr. Mike finishes with Bug and we soothe her and Dr. Mike lets us know that she has a slight astigmatism that he prescribed glasses for her to wear only a couple of hours a day to help correct that over time.
Then he lets us know that Rayleigh's vision issues derive from her seizure activity. They are starting in the focal region of her brain causing delays in vision. He is confident that she will improve a lot if/when we can get her seizures under control.
She has Cortical Vision Impairment (CVI).
Her eyes are just fine, it's just the part of the brain that reads what she sees that is having the issue. This is good and bad news. Good, because there's nothing REALLY WRONG with her but bad because this isn't just something we can fix.
We'll have to work even more with Rayleigh when it comes to looking at us and things around her. A lot of high contrast is great for her. I should try and get her to notice me and track toys without making noise to follow or let her know where I am.
We go back for a check-up with Dr. Mike in 6 months. He said he will be very surprised if her vision hasn't improved by then!
