Wednesday, July 23, 2008

So Far, So Good

I can feel my optimism returning and I find myself guarding it carefully. We had our appointment with the epileptologist today and my first knee-jerk reaction is to say it went wonderfully. She listened, took notes, affirmed us, and suggested the things we hoped she would. It was everything we had hoped for. But, as I learn, (ever so slowly) that I don't like to eat my words. I am going to tell you instead that things went nicely and "so far, so good."

She suggested a 24-hour EEG, so we are scheduling one so she can get a good read of what's going on. She questioned the doose/MAE diagnosis, but I don't want to react until she gets a better read. The other diagnosis she was leaning towards has a much worse prognosis. But then again, it's just a label for what we've already been dealing with. It won't change that. She also suggested that we try the ketogenic diet! We were very excited about this, as we would rather try it then go through the long list of meds that are out there. And, from what I've read, a good epileptologist would see this as a very worthwhile effort to reduce seizures. The only problem is that there is a 6-month waiting period for the diet, as it has to be initiated in the hospital. An alternative would be starting on the Modified Atkins Diet until we can get in. We are excited about this oppurtunity. From what I've read it does similar things that the ketogenic but is not as rigorous and will be easier on our family and especially Hewitt. Some people have had complete seizure freedom on this diet. We are hoping and praying for that!

So, that's about it for now. We aren't going to add any meds, which we are quite pleased with. Hopefully we will be seeing a dietician soon. If we don't, I'd like to start him on the MAD diet on my own. It seems very manageable. I am thankful for all of the people that have been encouraging me to follow my instincts as his mother. Hayden and I have made some hard decisions the last couple weeks regarding meds. But, each time we've made a change we've had a complete peace about it. Even now, I feel hopeful again. He is still having seizures, but I feel like we have some alternatives other than doping him up on drugs. Not that the diets are without possible side effects, but he should maintain his cognitive development on them.

We went to the park for the first time without Hayden today. We had a friend and her 2 boys with us, so that definitely helped. It was hard. He was having a hard time walking for some reason and was spacing out a lot. He also had his hockey helmet on which makes him stand out ever so slightly ;-). But, he didn't get hurt, and they all had fun. Mission accomplished. We are going to try to do everything we can to maintain a "normal" childhood for him. Sometimes I think the obstacles lie with my own issues than they do with his. Letting go is hard. I am thankful for today. I notice I am smiling easier. I think the break we got this weekend was just the rejuvenation I needed to face this with a little more fight than I have been.

1 comment:

Sarah said...

OMG Colleen!!! Tears come to my eyes as I read this and am so so very excited and relieved for you! Finally a doctor that will be your allie and not seem against you. I was going to ask you about the keto diet. I read on one of your links about it and all of the testimonials and was wondering why you guys hadn't started that with Hew. I didn't realize there was a waiting list and you had to see a dietian!
Well, I am so excited for you and also being able to get a weekend to catch up.

Love and prayers!
Sarah Dub