Cautiously Hopeful

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!

A 1-year Well Baby Visit

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.

A Bug Birthday

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.

Stopping One to Start Another

Yesterday afternoon we saw Bug's pediatric neurologist, Dr. Coleman, for a regular follow-up visit. We're all trying to figure out why Rayleigh Bug continues to have 3-5 seizures a week.


We still have about 3 weeks before we will see the full results from the increase of Clobazam that Dr. Hernandez has prescribed.
Dr. Coleman agrees with my husband and I that the Phenobarbital really contributing anymore to her seizure control so we're starting to wean her completely off of it. She is on 9ml each night right now and we will take it down 1ml a week until its gone. Dr. Coleman advised that her seizures could get slightly longer as we get her off the Phenobarb so let him know if they do and we might start weaning more quickly so she can start Trileptol.

That's the other big thing we discussed this meeting. Trileptol is used to control Partial Onset Seizures which is when the seizure activity begins or happens in one part of the brain. When Rayleigh had her 3-day EEG down at Cook Children's Hospital they concluded that Rayleigh's seizures begin in one lobe of her brain and spread after a few seconds to the whole brain. We haven't tried Trileptol earlier because the side effects are higher in infancy. So it's nice to know that there is still a medication out there that we haven't tried that might control the seizures fully. She continues to have 3-5 a week about 20 minutes into her nap.

If the Trileptol doesn't work after we get her on an appropriate dose we will begin the Ketogenic Diet at Cook Children's Hospital.

We see Dr. Coleman late in April so we will know by then if Clobazam is going to get them under control again by then. She will also be just about done with Phenobarb, I think we did the math and she will still have 2ml a night then. Coleman will go ahead and write the Trileptol prescription at the appt if the ClobazamPhenobarb down.

PS: Rayleigh Bug will be 1 year old 2 weeks from today!!!

Rayleigh's Birthday is Getting Close

For those of you who have been asking for gift ideas for Rayleigh's 1st Birthday, I have created an Amazon Wish List. Amazon lets you add items from any online store (Target, Baby Gap, Amazon, etc) so it makes it easy to add all the different things that Rayleigh likes!

You can view the Wish List at http://amzn.com/w/2RBBAJ8JNFPWU

If the link doesn't pull it up you can locate the wish list by going to WWW.AMAZON.COM and clicking the Wish List button and search for "Rayleigh". Her picture and wish list will appear to select.

Happy Shopping!!

Can't wait for her party, it will be a great celebration and huge milestone in all of our lives!

Clobazam Dose Change

Rayleigh is continuing to have 3-5 seizures a week. Each is still under a minute long. We see Dr. Coleman, her pediatric neurologist, on Friday to ask a few questions, get her weighed and have her physical.

We talked to Dr. Hernandez, her pediatric epileptologist from Cook Children's Hospital, about checking her Clobazam levels. He said that based on her current weight of 19 lbs we can go ahead and raise her dose to 1 full pill twice a day. Dose changes take a long time to take effect on her body so we need to allow 4 weeks. If she is still having seizures in 4 weeks we call back and he will have a blood test ordered through the local DLO lab to check her Clobazam levels to see if we have room to up the dose.

If there is not room to increase we may need to wean her off the Clobazam or try it in combination with a different medicine.

We will ask Dr. Coleman about Topomax (an anti-convulsant medication) and explore more about the Ketogenic Diet. Hopefully we find a medicine/dose that will get the seizures under control fully so we can avoid the Ketogenic Diet altogether. But if that diet works, we can't say no!

End of Month Update

I hadn't realized that it has been so long since my last post.

Rayleigh is now taking 1/2 pill of Clobazam in the morning and 10ml of Phenobarbital at nighttime + 1 full pill of Clobazam.

She has been on this Clobazam dose for about 3 weeks. We are seeing a decrease in seizure activity but not as much of control as we would have expected by this time. Bug is having 1 seizure every 2-3 days now. The past couple weeks she went 3 days with a seizure each day, 3 days with no seizure, 2 days with a seizure each day, 2 days without, and then she had a seizure today at naptime. There seems to be no pattern and no explanation.

We have called Dr. Coleman's office and left a message to see if there is any blood test that he can order (or have Dr. Hernandez from Cook Children's Hospital order) to check her Clobazam levels. Rayleigh is growing like a weed so we need to find a way to keep on top of her Clobazam dose increase.

If we can get them better controlled soon we will be looking into the Ketogenic Diet.

On the plus side, Bug is making excellent progress in her development. She is using her eyes much more and getting really good and watching what we put in her hands and tracking us. She is still not sitting independently yet but she is getting closer. She is, however, standing at a table or the couch all by herself!