Day 26!

Today marks 26 days since Eddy last had a seizure. To say that we are feeling relieved would be an enormous understatement. To say that we are feeling anxious would also be an understatement. Every day that goes by without a seizure is such a blessing, yet every day part of me is terrified that "Today's the day he's going to have another one." 

Ed and I keep asking each other, "What do you think it is that is helping Eddy?" Most likely, it's the phenobarbital, which he started, coincidentally, 26 days ago. I also think, though, that the increase in Vitamin B6 is at least in part helping him. We doubled his B6, from 70 mg a day to 140 mg a day, the same week he started taking the phenobarb. Pyridoxine Dependency is a very rare disorder where kids need massive amounts of pyridoxine, or vitamin B6, to help control their seizures. I don't think Eddy has Pyridoxine Dependency, but if there's a tiny chance that he does, it's worth it to continue giving him the B6. If you're interested, here's a link to another blog I've read about three little boys who have Pyridoxine Dependency: http://www.angelfire.com/amiga2/jenniz/

So Eddy is on 140 mg a day of B6 (and Dr. Gupta in Cleveland said we could increase it to 200 mg a day if we wanted to.) Just to give you a little perspective, normal toddlers need about 1 mg of B6 in a day. And Eddy is taking 140x that amount. The good thing about B6 is that it's a vitamin, and there aren't any crazy side effects (unless he takes it for a very long time; then we were told it can start causing nerve damage.)

Almost two weeks ago, we ended up back in the hospital with Eddy (exactly a week after we got home from Cleveland!). Ironically, it had nothing to do with Eddy's seizures. I brought him to the pediatrician for a fever (102 degrees) and lots of strange bruises all over his body (but he didn't fall...he woke up with them). Turns out, Eddy had influenza type B and extremely low platelets. (Normal platelet levels are between 150 and 400; Eddy's was 7.) He was immediately taken by ambulance, directly from the pediatrician's office, to Buffalo Children's, where he was started on an IV antibiotic and an immunoglobulin treatment to increase his platelets. His little body did not respond well to the treatment, and they had to stop it, but they started him on prednisolone (ironically, the same steroid he was going to be started on for infantile spasms.) Luckily he was only on the steroid for 5 days (I say luckily because it gave him horrible insomnia and irritability), and his platelets went from 7 to 15 to 35 to 108 (last Friday), to, yesterday's level of 389! (Now he's on the high-end of normal and I can feel much better about him falling and not having internal bleeding! He does still wear the helmet that they gave us at the hospital whenever he's crawling around, just to make mommy feel better. Pretty sure he's the cutest helmet-wearing kid ever!)

Last weekend, Ed and I were discussing and researching diet, development, and seizures. We read a lot of blogs, research articles, and general internet pages about how organic/gluten-free diets can help improve development in kids who have autism-like symptoms, and also can decrease the frequency of seizures. Although this is rare, we thought, "If we can change Eddy's diet and help his development improve and his seizures to stay away, then it is definitely worth a try." And if it doesn't stop the seizures, at least an organic, mostly gluten-free diet is going to be healthier for him. So, last Sunday, I did a three-hour, two-store grocery shopping trip (Ed's parents watched the baby during this massive shopping expedition - thank you!), and I came away with lots of organic, gluten-free, meals and snacks for Eddy. This week I have done way more preparation for Eddy's breakfasts, lunches, dinners, and snacks than I ever have before, but I can already see a positive change. He's much more alert, responsive, attentive, and his little personality is shining through more than ever before. It has definitely encouraged me to continue this time-consuming, (and expensive, holy cow) diet for Eddy. Here's what Eddy had to eat this week: organic bananas, lentils, acorn squash, carrots, peas, green beans, sweet potatoes, raspberries, gluten-free oatmeal with fruit, gluten-free dairy-free mac n cheese, gluten-free chicken tenders, buckwheat waffles, animal crackers, oat cereal, organic yogurt, and organic quinoa and brown rice. Much healthier than the Gerber toddler meals that I threw in the microwave for thirty seconds for lunch and dinner. (I always thought they were healthy because they have a meat and a vegetable, but after reading the long list of ingredients and seeing all the preservatives, I realized they weren't as healthy as I thought they were.) This has already, in the past week, opened up my eyes to the importance of healthy, wholesome foods. I've always "known" all of this intellectually, but only now is it making sense practically. It wasn't until we had a child and thought about how the food going into his body is fuel for his energy, brain development, and physical development that it actually started to make sense. I am optimistic about this organic gluten-free diet and I hope that it continues to make Eddy healthier.

Here is a picture of Eddy after feeding himself some lentils yesterday. :)

I know that I say this often, but I truly mean it. Thank you SO much for all of your good thoughts and special prayers for Eddy and for us. I feel like things have turned a corner, and I know that God has heard, and is continuing to hear, all of our prayers. For the first time in a long time, I feel hopeful, and not too terrified, about the future. The last month (ok, three months) was very difficult, but we are optimistic that things will continue to get better. Thank you, thank you, thank you for your prayers. <3