Rayleigh's 4th of July Tradition

Just about every 4th of July Michael and I (and now Bug, too!) go to a local festival during the day for some shopping and fair food and then come home and relax until fireworks time with family! We go to a nearby place that does a huge fireworks show and sit on some fold out chairs and enjoy the show Oklahoma style! We're usually right under the display and it is very loud and bright and beautiful!

Bug was only 3 months old for her first Independence Day fireworks show and was still in that asleep more than awake phase so it wasn't really a surprise that she slept through the display of loud and bright fireworks in 2010.

This year, though, it seemed like she timed it perfect. She stayed awake right up until the first firework went off and then snuggled up to her Lovie and fell right asleep and stayed asleep for the whole show!

Developmental Therapy

Rayleigh Bug is now receiving physical and occupational therapy from 2 different sources. One is a free, local early-intervention program called SoonerStart offered in the state of Oklahoma. The other is Jim Thorpe Rehabilitation Hospital that is located as part of the Baptist medical center where her neurologist and pediatrician are both at.

Bug has been with SoonerStart since she was 7 months old. They are an in-home service that arrive weekly to work with your child on their need (physical, occupational and/or speech) for an hour. You see the same OT/PT/ST each week at the same time so your child is familiar with the person and the routine. Our OT is Stephanie and she is great. Because SoonerStart is offered free and is financed through the state they don't have as many therapists as they need so usually your OT or PT will work as both parts as your child needs. So, as Bug's OT, Stephanie's job is mainly to focus on getting Bug to activate a toy, attend to toys and people, reach for things and things of that nature. But, working both sides of things she also works on getting Bug to sit, crawl and prop. 

We had our first evaluation with Jim Thrope last week and we were pleasantly surprised! We had no idea how well Rayleigh would respond to "working" outside of the home. You see, with Jim Thrope therapy you go to their facility and it all happens in one room on playmats, swings, big toys and more. 

We met Bug's PT, Rachel, the first day and Rayleigh seriously adores her! So this past Thursday was Bug's first day of work :) She did AMAZING for Rachel. They did sitting activities, crawling position, activating and holding toys and rolling activities. 

Jim Thorpe would like to see Rayleigh Bug twice a week and we would love for her to go twice a week. Unfortunately, that is not in the cards for us right now. Jim Thorpe costs us $25 out of pocket each visit (that is after what insurance covers) AND insurance will only cover 20 visits a year. That's not even every other week :( We're feeling a little discouraged that we found this amazing place but aren't able to utilize the full potential of it. Hopefully we'll hear about TEFRA/Medicaid soon and we'll be able to go to Jim Thorpe for Bug as often as they want us and not have to worry about the money part of things!

Oh, and Rayleigh is now saying her MMMMmmmm's which includes her saying "mamama" a few times :) 

1 Week; 2 Appointments

Rayleigh Bug had a fairly busy week this week. Looking back at the calendar there is not one day unmarked... except tomorrow! Maybe a good ol' fashioned morning of relaxing in bed and drinking some coffee? (Bug will of course have milk!)

Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!

When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!

Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.

He also prescribed Ammoxocillian that we picked up that evening.

She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.

Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.

Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.

Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.

Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.

Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.

So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.

Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...

When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.

Another Waiting Game

When we left off, Rayleigh's pediatric neurologist told us to wean off Topomax and she would stay on the Trileptal and Clobazam alone until we started the Ketogenic Diet in August. After a couple days of only taking Topomax at night Rayleigh began to have seizures twice a day rather than just once. The seizures remain only happening while she's asleep, so she went from having one during her nap to having one during her nap and then a second about an hour after falling asleep for the night.

These types of changes are not uncommon when weaning off of an anti-convulsant medication but when it continued for a week we called her neuros office and spoke with the doctor on call. It was not her usual ped neuro but we had spoken with this one before. She told us that based on Rayleigh's weight we can go ahead and increase her Clobazam from 25 mg daily (1 pill in morning, 1.5 pill at night) to 30 mg daily (1 pill, 3 times a day). We hadn't tried splitting her Clobazam into 3 times a day like she's been doing with her Trileptal. 

So we gave her 1 pill with her 2ml Trileptal right after I got off the phone with the doctor. That night she did not have a seizure.

In fact, she has been back down to 1 seizure a day, at naptime, since we increased the dose of Clobazam. Its weird though, because Clobazam does not usually take effect so quickly. We'll see...