Jenelle is doing much better than she was on Monday with her allergic reaction. I still see some rash on her body, but very minor and she does not seem as agitated which is good. We met with Dr. Ben-Ezer yesterday as our follow up and I mentioned the second UTI. Dr. Ben-Ezer agreed it was a good idea to follow through with the Kidney Reflux testing (ultra sound and something called a VCVG.) I have now been "educated" about Kidney Reflux since my last update, and basically it is where urine from the bladder backs up into the kidneys. It can happen for various reasons, and at its worst, can damage kidneys. It will be good to test for this. Dr. Ben-Ezer is also increasing Jenelle's Bi-Carb supplement to 16mls three times a day. I was not happy to hear that as this stuff tastes like Baking Soda (imagine trying to force that down your child three times a day) but agree it seems to be helping her acidosis. Her last level was a 19, which is still low (minimum normal level is 24), but for a child on the Ketogenic Diet it is good!
Prior to meeting with Dr. Ben-Ezer, we met with Jenelle's teachers at the Blind Children's Learning Center to discuss Jenelle's progress (our usual 6 month meeting to discuss goals and such.) Usually these meetings are so grim when you see on paper that your child is still at the development level of a 3 month old, but Jenelle's teachers actually had a lot of good news about her progress to report and they were very excited about Jenelle's overall accomplishments and recent changes due to the diet. Still, on paper, she hasn't improved much, but she is on her way! The other difficult part of evaluating a child like Jenelle is that her vision problems make her score lower on the standardized tests. Compared to a sighted child, she is very behind, but when you take into account that she is blind, you realize she has made great strides. When Jenelle turns 3 in October, she will be turned over from Regional Center to our local school district as far as management of her therapies and social services are concerned. We discussed this in detail and started to think about goals for her upcoming transition. Hopefully our school district will continue to keep her at Blind Children's where she is getting the best therapy based on her limited vision - however, that may not be possible. A lot of things need to happen in the coming months, and hopefully with the seizure control we are now seeing from the diet, Jenelle's progress will continue to improve!
As far as the diet is concerned - so far, so good! I continue to see fewer seizures and when she does have them, they are very, very short. She still does not like her food, but I spoke with the Dietician at UCLA on Tuesday, and we are changing her meals a little to see if that will help along with adding carbohydrates to lower her ketones (which are still elevated to the max.) Worst case scenario is that we could put Jenelle on straight Keto formula, but then she wouldn't get to eat food and may lose the few chewing skills she has mastered. Please send some extra "eat the yucky food" vibes for Jenelle as that may help too!
That is all for now - I'll keep you posted! Thank you for the continued prayers.