Mira is rebounding from a rough few weeks and we have made some changes, starting yesterday. We noticed that she started becoming increasingly irritable soon after starting Ketocal, about two weeks ago. I really hate to sound so jaded, but I attribute her problems directly with Ketocal and what it has in it. It contains aspartame, which is an artificial sweetener. While there is some truly frightening literature out there (read this story or this one and why not another or get the book from Amazon.com, read them and form your own opinions) I can't help but believe that aspartame is a seizure trigger for her or at a minimum, causes some issues with her.
In addition to causing irritability issues, the Ketocal was also causing a lot of constipation, which stresses her out. We stopped the Ketocal yesterday and gave her several doses of Miralax over the past day and a half and she has been doing remarkably better than she was yesterday. She still had 2 seizures, but she is in a much better mood and stopped twitching. And yes, she pooped A TON today. If you want details, Sarah and I can provide.
Regardless of whether aspartame is a trigger or not, we are going to stay clear of it (along with other artificial sweeteners) all together and talk to neurology and her dietitian about alternative methods of boosting her ketones.
2 comments:
Your daughter is just the cutest thing. I found your blog through Daniel Spranger's (Mel is in a preemie yahoo group to which I also belong). Just thought I would drop a note to say hi because we are in the KC metro area, too. My son has not been diagnosed with seizures, but he possibly has CVI and is being seen by Kim at CCVI, so maybe we will run into one another some time.
Take care,
Erin
p.s. I love the photo with the polka dot background dated March 2006... did you get that professionally done by someone in town?
Mira is gorgeous.
I came across your site while researching for a new site that has been set up for children with CDKL5 disorders.
http://www.cdkl5.com
I don't know whether you have heard of CDKL5 because it is so new. Children with IS are being tested for it and the number diagnosed is growing rapidly.
Hugs,
Mum to 3 children with CDKL5
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