Wednesday, January 7, 2009

Winter time!

Well, I'm a bad blogging mom. But it's time for a Lily Update as there are some big things going on!

First off, HI JEAN!

Ok, now that's out of the way...

Lily came off the Ketogenic Diet over Christmas. It wasn't planned, and I think our neurologist is not super thrilled, but it was the right thing for us to do. Lily had a little stomach flu and couldn't keep anything Keto Friendly in her body. So we initiated the B.R.A.T. diet: Bananas, Rice, Applesauce, Toast. We stuck with bananas and dry toast, which aren't exactly Keto foods. And she was SO SO SO happy. Seriously, we haven't seen her that happy since before starting the diet. We did 24 hours of BRAT, then tried some Keto Foods. And they just went right through her, so back to BRAT we went. And she was so happy, not exhibiting ANY side effects of "normal" food, that we slowly introduced other normal stuff: turkey, beef, milk, cheese, yogurt, etc. We didn't "carb load" her, we tried to stick to higher protein stuff for a few days.

All in all, it has made a WORLD of difference for her disposition. She is having fewer seizures than before her illness. We don't know if they will eventually creep back up, but it just became clear that the diet wasn't helping her enough to make the trouble and hassle worth it. And putting LIly back on a regular diet opens up all kinds of teaching/therapy possibilites because food is a major motivator for Lily. We can use it as a reward for performing certain tasks and activites.

We couldn't be happier with our decision, despite it being an unconventional move and not what we had originally talked about with our neurologist.

Lily is also going to be weaned off of Ganaxolone, the study drug she takes. Marinus, the drug company sponsoring the study, has found that Ganaxolone doesn't provide the kinds of seizure control results they wanted so they're pulling the study & will not be pursuing FDA approval (at least for use in Infantile could be approved for other siezure types). So, we start the wean next Monday and she'll be off by early February.

This leaves us in a bit of a pickle as we're waiting on some genetic testing results before we start the next medication that we want to try (Valproic Acid). We'll set up the plan next week, but we may add a different med to bridge the time before our genetic results are back.

Lily was officially diagnosed with autism this summer. Normally parents don't cheer this diagnosis, but we did! This opens up a benefit in our insurance that will cover the majority of ABA therapy for Lily. I'm working on getting that set up for her now. I'm so excited about this! I just know it's going to do wonders for Lily and that she'll really start to learn. Our friends Cody and Sophie have both exploded in development with the use of ABA.

Lily is 1/3 the way through her first year of school. We really like her teacher and her 1:1 aide, and are happy with how things are going. We're going to revise some of her IEP goals soon now that we can use food as a motivator/teaching tool. There's just so much more we can do with Lily without the burden of food restrictions!

Finally we are working on arranging a trip out to consult with Dr. Harry Chugani at Children's Hospital of Michigan. Dr. Chugani is considered "the" doctor to see among IS parents. He has pioneered the use of PET scans to treat Infantile Spasms and determine if kiddos are surgical candidates or not. It's a path we've considered for a long time, since Lily was 6 months old at least. We haven't been able to pursue it this past year since Lily's been on the diet, but now that she's off we are planning a trip. It won't be easy -- it involves a 24 hour EEG, a PET scan (with sedation) and theoretically, a second kind of PET scan that Dr. Chugani is studying. Then on the fourth day we actually get to meet with Dr. Chugani and discuss all the results.

We'd probably take the whole family to go. It's very important for Hank & Lily to be together as they really depend on each other. It's important for Hank to be a part of Lily's world as it is, and will be, his world for his whole life. He's such a natural caretaker of her -- he is always checking on her, loves to snuggle her, and nwo that she's off-diet, FEED HER! LOL! Anyhow, since we'd be taking all four of us, we'll probably drive down to Maumee, OH to visit Todd's grandma. Hopefully Todd's mom will come up to visit, along with his sister & her kids. The four cousins haven't been together since before Lily was diagnosed -- October, 2005! I can't wait for these kids to be together and play!!

Here are the twins on Christmas Eve:


Karen said...

So good to hear from you! I bet Lily was so glad to eat some of that yummy food, I know Cami was and she only did the diet for a month. So weird how any med or diet works on them, Cameran's seizures changed into a different form while on that diet. I hope you get lots of answers on your trip! Best wishes to your sweet girl!

Karen said...

As for what Camerans new ones that developed while on that diet they slowly morphed into Generalized Epilepsy and the Infantile Spasms slowly faded away all while on the diet. In one weeks time they went from the very fast head drops to very slow animated looking ones. Her head would slowly start moving down and to the left and her eyes would roll to the side and her arms would still come up but she would just sit there like that for up to 10-20 seconds. Her arms eventually go to wear they started to shake with them. The old seizures just disappeared the new ones took over all on the diet. SO they did an overnight EEG and the I.S. was gone and was now having a new kind. They took her off the diet and put her on Depakote while in the hospital and 3-4 days later all the seizures where gone and have remained so for almost 2 years now. So not sure if she would have had those new ones off the diet since we got off the diet all in the same time of starting that new med. Weird huh! Wonder if the diet had anything to do with that?

Jennybell said...

You may think about a trip to Deerborn MI to the Henry Ford museum while you're in Michigan if you get the chance. I happened to go to Cammeran's Infantile Spasms and got to your site that way. My daughter has a different seizure type and Depakote was a monster for us but seems to work for the IS. The diet is helping her. Treating seizures is more Art than Science. We live in Ohio and go to the Cleveland Clinic. I feel so thankful we have good Dr's close by. It amazes me that people have to travel across country to see Dr's. Even Children's of Michigan is only about 2 or 3 hours away. Plus we've got Children's of Columbus OH and Rainbow Babies at University Hosp. which I think is #1 in our state for epilepsy surgery. They say no matter where you live in Ohio you're with in 2 hours from a Children's hospital.