Oh where to start? It was back in May when I met a lovely lady and her granddaughter at the post office. She was gushing over Chloe in her wheelchair and said her granddaughter had once been in a wheelchair just like Chloe's! The little girl with her was walking so I asked about the granddaughter in the wheelchair and she explained that it was the girl with her and she no longer needed a wheelchair! Of course I wanted more details and she happily explained. Her granddaughter had a seizure disorder and was non-verbal, non-mobile, and blind at the age of 6 despite many treatments including multiple surgeries, meds, and even experimental treatment outside of the country. Her mom decided to try the ketogenic diet as a last resort. Within months, she was sitting up and starting to talk. At the time we met, she was walking with braces (so well that I didn't even notice), was able to see with just glasses, and was speaking as though she had never had any problems with speech whatsoever. I was floored! Of course the grandma thought I should look into the diet for Chloe. I honestly didn't think it would be something Dr. Lloyd would go for, but decided to ask him about it. I guess part of me was afraid to get my hopes up. Well we saw Dr. Lloyd not long afterwards and he said that, yes, since Chloe is g-tube fed now, it would be worth trying! He was teary eyed and seemed so hopeful for us! The next step was meeting with a nutritionist and reading a book. The nutritionist was also super excited to try this for Chloe. I was still tentative, but hopeful. Then I read the recommended book and hope overfilled my heart! One of the chapters was about what makes a patient an ideal candidate and potential "super responder" to the diet. There were 5 bullet points and Chloe met 3 of them!!! I finally decided to be optimistic about the possibility that this could actually help Chloe! Even if it just helped her hold her head up without a neck brace or use her hands better...what an impact that could make in our lives!
They put her inpatient for the implementation phase the first week of October. They said she would be inpatient for 2 days, maybe 4 at the most. She was perfectly content as long as Barney was on the ipad.
We went on walks around the hospital every day. Chloe liked the music room the very best. I would play the piano for her and we were usually the only ones in there. I loved this shine on wall and wish I'd had my better camera and that she had been in a cuter outfit and smiled. Oh to live in a perfect world!
So things went well the first couple of days. She went into ketosis more quickly than kids usually do. We thought that was a good thing. But then she ended up being too ketotic and was very sick and her labs were crazy, especially her carbon dioxide levels. She kept throwing up and was so so sick! I've never felt more awful because I felt like she was perfectly fine and I put her in this position for selfish motives. That's crazy, I know, but that's how I felt. It was just awful seeing her that way. And it didn't help that my pregnancy nausea was particularly awful while we were there. Also event though Oby had kidney stone surgery just a week before, it hadn't helped and he was sick. Also, while we were in the hospital, we found out he needed another surgery on the other side. Sigh. When it rains....
We ultimately decided to take her off the diet completely. We had tried tweaking the percentage for a few days, but she just was so sick and couldn't pull out of it. The process of getting back on a normal diet was a bit of a roller coaster ride.. She'd be perfectly happy one minute and completely miserable the next. And emotionally, I was very disappointed about giving up the idea that the diet would help.
Ultimately, getting IV fluids helped bring her body out of the funk she was in. And the doctors said they thought the way her body responded indicated that she had been in a state of chronic dehydration. Thru suggested that we start giving her liquids throughout the night and once she started to tolerate a lot more liquids each day, we could (and they stressed, should) try the diet again. So we didn't take it off the table, but we pushed it to the edge of the table for now.
She was happy as ever by the time we left. I had never loved her more.
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