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!
To summarize the last post: Rayleigh started Trileptal on Thursday night, April 14. The next day was her first full day on the new medicine. She had a small seizure that Friday during naptime. It was under 30 seconds, not very intense and she breathed well throughout the entire time. She had a seizure-free weekend and then had a small seizure (like the previous Friday) on Monday morning. Then she went over a week without a seizure. Bug woke up with a small seizure on Wednesday night, April 27. The night before her appt. with Dr. Coleman, her pediatric neurologist.
Back to Friday, April 22, during her "seizure-free" week; we were doing some Earth Day fun with Bug's friend Maddie. Bug was sitting in her Bumbo chair enjoying the feel of paint between her toes when all of sudden she would burst out in shrieking tears for 2 seconds and then be fine again. She did this twice with me thinking it was her ongoing teething pains but then I started to think that this sounded much more intense so I started watching her face mostly when I noticed that right before the shrieking her arms would flail out, tense up and go straight out to the sides and then she would relax. She did this about 7-8 times over a 4 minute period.
They looked like a more severe form of the myoclonic jerks she used to experience after a tonic/partial-onset seizure. Bug has not had that jerking motion since that day. I talked to some fellow moms that have daughter's with epilepsy to get some idea of what the jerks might be from and did some research online. I found out a couple of things to talk to Dr. Coleman about at our next appt.
1.) Body & brain adjusting to new medicine
2.) Myoclonic Seizures
3.) Infantile Spasms
4.) New seizures developing
5.) Dravet Syndrome (tested negative for this in the past)
Naturally, this was the first topic we discussed at her appt. with Dr. Coleman. I demonstrated exactly how I saw the jerks and crying for Coleman since I didn't capture them on video.
Coleman said that I need to keep an even sharper eye out for these motions because if they happen again it could be Infantile Spasms which is another form of epilepsy and she would need stronger medication for such as steroids. But because they only happened the one day and it was 2 hours after her morning medicine dose he feels that it was most likely Bug's brain reacting to the new medicine. Coleman said that medicine's have an effect that can change the way a seizure starts or looks and that is another possibility of why she had the jerks. The number one thing that Michael and I were concerned with regarding the jerks was that she had them while she was wide awake. She's never had a seizure outside of sleep. Coleman said that there really isn't a direct answer for why, just possibilities.
We also discussed her upcoming appt. with Dr. Siatowski, a leading neuro opthomologist in Oklahoma. He kind of let us know what to expect and what he would be sending to Dr. Siatowski as far as notes, MRIs, EEGs, etc.
Dr. Coleman said that he feels good about this Trileptal because it's the first medicine to take control so quickly and that we need to call him if we see the jerks again or if the seizures become frequent again. Other than that, we don't see him for 2 months.
We haven't seen any jerks since that one time. She also hasn't had a seizure since Wednesday night. Please keep Buggie in your prayers as we give this medicine a fair trial.
Life has been pretty hectic in our household recently! A lot going on! A lot of fun, new things and a lot of usual things. Rayleigh has been fortunate enough to see her BFF, Maddie, a lot more recently. Maddie is almost 2 years old and is an amazingly smart, pretty little girl who can teach Rayleigh a lot! Our little Bug really seems to thrive when seeing her and really watches what Maddie does!
Bug is to the point where she can sit independently for a few seconds at a time and sits really well if we sit in front of her and hold her hands. She's been fighting tummy time a little more than usual but we're working on it. She has 4 big teeth and is working on more - which makes her irritable to say the least!
On to what you've been waiting for... Trileptol is already showing some promise. We started her on it on a Thursday. The next day, at naptime, she had a small seizure. When I say small I mean it was 40 seconds long, she breathed well the entire time and she was not tensed up throughout the entire thing. This is already such an improvement from what they had been so Michael and I said that even if that's all Trileptol can do for her that it is worth it!
Saturday & Sunday Bug was seizure free!!! Not a single one! She took long naps both days and was able to sleep peacefully without waking up 20 minutes into the nap to have a nasty seizure and fall back asleep for her body to recover. Not one!
Monday Bug woke up at 5 am and went back to sleep around 6:35 am. She woke up with a seizure close to 7 am. This was even smaller than Friday's. The whole thing only lasted 30 seconds and she breathed well throughout again!
She hasn't had one yet (fingers crossed) since Monday mornings. We've been watching her like a hawk when she's asleep in case she has one and doesn't make any noise before or during the seizure. All we can hope is that Trileptol is really working - and that this isn't just another honeymoon phase because I don't know if we can handle that let down again.
We are so happy for Bug to be having so many less seizures right now, it really makes a difference in her behavior. We'll see if it starts to make a difference in her development, too.
Praying that this is the key we've been looking for!
Rayleigh had her well-baby 1-year old checkup with her regular pediatrician last week. First off, let me say that Dr. Albiek is so amazing with Rayleigh!
Our little Bug now weighs about 19.5 lbs! She is in the 25% of height & 10-25% of weight. She has remained on the same growing curve the whole time! Dr. Albiek said that her muscle tone is pretty weak for her age and he believes it could be neurological - something that goes along with her epilepsy maybe? That explains why she still, to this day, hates tummy time... it bothers her because she's not quite strong enough. She's getting better every day, we just have to do it consistently so her muscles develop more! We are so not worried about her leg muscles though, just her upper body. Lots of forced tummy time coming up!
She also was checked for anemia and received one shot. It was a pretty basic visit all things considered.
On to other news, Bug is sadly up to at least 1 seizure a day. There have been 2 days in the last month that she has had 2 seizures in 1 day. The seizure itself has been anywhere from 35 seconds to 1 min 20 seconds. She doesn't take a breath in until about 20 seconds into it, which is the scariest thing we've been dealing with! Bug has also had myoclonic jerks after each seizure that are about 2 seconds apart and last for 1-2 minutes.
We have been keeping her pediatric neurologist posted as they increase in either time, severity or frequency. We were weaning her Phenobarbital by 1ml a week. He now wants us to wean 1ml every 5 days to speed it up slightly. We are down to 4ml Phenobarb right now. She is also still taking her Clobazam twice a day.
We start Trileptol TODAY! Her ped. neurologist wants to wean her slowly so we will begin giving it to her 3 times a day so that it does not make her drowsy. Once she's off of the Phenobarb we will probably reduce to twice a day.
We are so hopeful that this Trileptol is the answer. Mostly because it is our last resort before the Ketogenic Diet. Trileptol will be different from the other medicines because it protects from a different part of the brain - kind of like attacking at a different angle. It's obvious that the brain has formed an immunity to whatever side of the brain Phenobarb, Keppra, Topomax and the other meds we've tried are coming from. Also, Trileptol specializes in Partial Onset seizures which is what hers start as.
Wish Buggie luck on this new medicine! We all need it.
This post is loooonng overdue! But I wanted to quickly cover Rayleigh's Bug's first birthday! We got lucky this year, her birthday was on a Saturday so we were able to celebrate with a big party on her actual birthday!
We had friends and family and lots of kids over for a small bash at our home. The theme for her party was zebra & hot pink. Something sassy and cute just like our Bug is! I made the banners for the mantel and her highchair and I used iron-ons for her onesie. Bug's BFF, Maddie, loaned her her tutu which was hot pink with zebra trim to wear for the party!
Most everyone arrived right around the same time and we started with lots of mingling and chit-chatting and introducing! Rayleigh was starting to get overwhelmed (and overtired!) with everyone there so we went ahead and went to the living room to open presents! Rayleigh got so many wonderful things from everyone who loves her! But as much as she loved getting the gifts, she couldn't fight sleep off any longer and fell asleep halfway through unwrapping!
She woke up shortly after gifts were over and was ready for a great time of watching and playing with the other kids there! It was so awesome to have all of our friends and their kids over at the same time! The kids all played really well together!
Rayleigh's first cake was... quite an experience. First, her daddy puts her hands straight into the icing! Then we sing the birthday song (sooo sweet) and cut her a big 'ol piece for her to share with her mommy and daddy! We put a little ice cream on top of her piece to get a little soggy for her to eat better and she went to town taking bites from anyone who put her spoon in her mouth!
It was such a wonderful time and a big milestone for our little one :) We're so proud of all the things she has learned up to this point and are thrilled that the learning continues every day.
