I may go crazy. My Internet is extremely slow. Kendall is sleeping a lot. So is Justin. I can't stop eating. And we may have just found out my mom have more health problems. (as if she doesn't already have enough!)
You see, while we're here trying to get Kendall started out on the Ketogenic diet, we thought it would be a good idea to practice checking glucose on each other. Harmless enough, right?
Um yeah, so mine was 93 (great), Justin 96 (great), Roxie: 151 (not so great) The thing is the woman already has to get her 5th hip replacement in November and she's starting Interfuron (or however you spell it)soon after that. Type II Diabetes...not a great addition. Seriously!?!
At any rate, its been a pretty rough morning. Kendall hasn't had anything to eat since last night at 6:00. Our Dr. doesn't make her fast for 24 hours like some. We will be able to start the KetoCal as soon as the poor baby goes enough in her diaper so we can check her Ketones. we did meet with the Dietician and shared some of our concerns. One being, I do still want to be able to feed her solid pureed foods. Eating from a spoon has been a skill we have worked very hard on. I do not want to lose that skill.
Seizures have been really bad. After she woke up from a nap, she had a cluster of 37 spasms in an hour. I had no idea she was having them every 2 minutes. We had trouble giving her Keppra in water this morning, but she did take her Vigabatrin and Topamax with sugar free jello. That will be the end of the Topamax. She can't have it while on the Ketogenic Diet.
I was surprised to hear we also have to be mindful of lotions, sunscreens, perfumes, etc...that are scented. Apparently the carbs in them can be absorbed through the skin?! (maybe that's why I cant shed these last 15 pounds of baby weight even though I run my butt off...)
I'll update again soon. Maybe today, maybe tomorrow. Blogging this week will give me a break and help me summarize my thoughts. Any and all comments are welcome. I always learn so much from my blogging friends who have traveled this road already.
Til the next time...
Hudson Rests in His Hands 5/14/2007-1/2/2022
3 months ago
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8 comments:
If you go to the Charlie Foundation website they have a list of all the lotions, toothpaste, etc that are carb/sugar free. you also have to be really careful on liquid meds, example tylenols, antibiotic, etc. I am a little suprised that you have to give up your Topomax. we were able to stay on it (one cause my son does really well with it) he did have a little kidney issues with the both but we are able manage it. good luck keep the faith, it will be worth it! Jill @ jilldes@hotmail.com
I love reading your Journey! My heart is full! As I said before my family will continue to lift yours up!
CRAZY!!!! I never knew you can absorb carbs, although I have always sworn I can just walk by cake and get fat. Anyway, good luck on everything. I find all this diet talk fascinating. I also found someone today who's daughter has schiz, and she had stem cell therapy that helped!!!!!!
Do they not use Keto - Diasticks it will check for sugars as well as test for ketones. THats what we use for Finny. Its only if his Ketones are to huge and I want to check where his sugar is we use the meter. My hubby is a type II diabetic he has been for 13 years. He was 27 when he got diagnosed it is very managable.
They usually start them on the liquid diet and then slowely give food. Finnian doesn't eat enough food so thats why he is on the liquid.
Good luck
You guys are all on my mind! Sending pryers and hugs your way!!
Hey Chica~ Don't go crazy the 'big people' hospital is just next door...they might keep ya! Maybe that's a good thing though :-)
I know it's hard getting all settled in, but by the end of the week you will be in a routine and ready to break free.
I have a really awesome blender you can borrow if you want to puree any approved Keto food for Kendall so that she keeps up that great eating!
Prayers that everything goes well and for those seizures to take a break for good.....
Thanks for posting all the updates. We're thinking about you guys and wish your whole family well.
I'm still dealing with that whole "absorbing carbs" thing. Bizarre.
Take care,
Trey Dzialo
The Ketogenic diet is a treatment for epilepsy that relies on inducing a state of ketosis. The diet prescribes foods high in fat, and heavily restricts carbohydrate intake. As fats become the body's primary source of metabolic energy, ketones accumulate in the brain, which can alleviate epileptic symptoms. The diet is more effective in children than adults, particularly when anticonvulsant drug therapy is ineffective (20%-30% of patients) or contraindicated.
The diet provides 3-4 grams of fat for every 1 gram of carbohydrate, calling for such foods as high-triglyceride dairy products (butter, cream, mayonnaise) and peanut butter. Carbohydrates, found in breads and starches, are eliminated from the diet, and liquid intake is often restricted as well in order to aid ketone accumulation.
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