I've been meaning to keep updating, but so much has been going on lately in terms of Brendan's development and his epilepsy. I wont get to touch on it all in this brief post, but a few highlights:
1. In mid-July we visited a Integrative (read: open to natural/alternative approaches) Pediatric Neurologist in NYC that my mom had found. The three hour drive (and three hours home) were long and the price was steep, but it was definitely refreshing to talk to someone who was actually interested in finding the root of the problem, who was considering Brendan's overall health as a whole person, and to whom I didn't feel the need to defend my naturopathic tendencies to every five minutes. She ordered a series of blood tests, a stool sample, and a urine sample, and was most interested in Brendan's "gut" and metabolism based on a some elevated levels in his previous blood tests. She suggested that we went ahead and took the final step towards the modified Atkins to see what happens.
2. Only one week later we finally got in to see the "traditional" Pediatric Neurologist at the local children's hospital. We had seen another local ped. neurologist a few months before and liked him okay, but his office was horrible. I never spoke to a live person everytime I called and it literally took them three weeks to finally call in a prescription that we desperately needed (despite me calling and leaving messages at least 3X a week). I found that inexcusable, so I was excited to have the option of the children's hospital which is also where Brendan's dietician is based, and which has a very good reputation in family-friendly care. We liked the new doctor, although she's a commanding presence. She too seemed to be immediately interested in getting to the root of the problem, although she took a different approach from the dr. in NYC. She ordered an MRI and blood tests of her own. She said to go ahead with the MAD and gave us the prescriptions that we had been waiting for (ketostix and powdered multivitamin) but was worried about Brendan's elevated cholesterol levels. She was the most hands-on of all the drs. we have seen yet and performed a number of neurological tests on Brendan herself as well as using her hands to check his liver size and consistency. I was also excited that she was anxious to wean Brendan off Keppra as soon as his diet is stable (although she's not writing off other drugs).
3. We have since moved ahead with the MAD, really we have been inching that way all along. The last thing to kick was the juice, which had become very watered down at this point. Luckily I figured out how to sweeten a lemon herbal tea with stevia in a way that Brendan is usually happy with. (I've been experimenting with a lot of recipes, but more about that at another time). So, I still don't think that we're at the 10 daily carbs recommended on the MAD, (more like 15-25) but I guess it doesn't matter because Brendan is in ketosis! He loves peeing on the ketostix by the way, thinks it's great fun. AND.....it seems to be working!!! Yay!!! He's had a number of seizure free days in the past week, and those that haven't been seizure-free, he's had just one and that was just before falling asleep (one of his most susceptible times).
The past few days he's been sleepy and grumpy, and I wasn't sure if it was from just starting at daycare, the diet, or if he was starting to get sick. I read on a lot of the forums that the first week is the roughest in terms of feeling lethargic and grumpy because your brain hasn't quite figured out how to get sufficient energy from the fats and not sugars. But, today he seemed much better. Full of energy and spunk.
I'm afraid of jinxing anything, but I think we're really on the path to recovery here. I can't wait to kick the keppra. Of course, we'll still have to see what all the tests say, I'm particularly apprehensive about his cholesterol level because I'd really fight to keep him on this diet if it's working, but I know that the docs might have major problems if the cholesterol continues to rise.
The next 2 weeks will be critical. We've got to survive his birthday and a week of vacation and stick to the diet, then get the MRI and bloodwork done and wait for results from all the tests! It seems like so much at once after a year of trying to get someone to do something besides up his dosage on the same med!!! But I am so so so thankful and so positive. It's amazing how quickly it's already become "normal" for him to be seizure-free, and that is how it should be!!!
No comments:
Post a Comment