We had our appointment with the dietitian yesterday. I wasn't sure what to expect going in, because we've seen such good improvement with what we've been doing we didn't know what else she would help us with. He is still having some lingering seizures, most of which come from deciphering which sugars are okay, or him eating something with dairy. Because of these, she wanted to just keep going down the road we're on instead of starting a whole new diet. I appreciated that because it seems silly to do something totally different when what we're doing is working! We still have our appointment next week at Bastyr as well, so hopefully between the two we'll come up with a good plan. For now, she wants me to cut ALL kinds of sugars out, not just refined, reduce his carbs and up his fat and fiber intake. I'm still trying to decide if I want to do this yet. Things seem to go really well as long as we're careful about what he eats and we keep him regular. He already has so many restrictions as it is, if we don't have to restrict more it would be really nice. On the other hand, if the seizures pick back up again, we'll gladly make changes and see if it helps.
The dietitian was nice, well organized and knew her stuff. I still couldn't get her to recognize the significance of the changes we've made and the results we're seeing. That was frustrating. But, hopefully next weeks appointment will be more helpful.
Hewitt is continually improving cognitively. His memory is functioning much better and he just LOOKS brighter and healthier. It's an amazing blessing and I'm so thankful for God's timing with all of this. I can't imagine trying to home school the boys and keep Hewitt safe from all of his falls!
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2 comments:
Colleen!!! You are amazing! I love what you do for your family and what a beautiful, funny, smart, nice, coffee-drinkin'girl you are. I am so excited that the diet stuff is making a difference. Praise God! Maybe I should try no sugar in honor of Hewitt? I bet I would lose the 15 lbs I've gained since school started!!!! (no joke! how is that even possible?!?)
Hi Colleen... I am a friend of Jess's. I met you once at the park up here in Bham. Jess told me about what was going on with your son. I am so sorry to hear about this. We will be praying for all of you...
Just curious... I had a 4 yo patient last year with this seizure disorder. His mom had a nutritionist prescribe a very specific ketogenic diet for him, and he is doing VERY well on it. He went from multiple seizures a day to none in a year. Ketogenic diets are NOT commonly prescribed, but can be done with the help of a knowledgeable nutritionist. Just thought I would let you know...
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