Eating for Kendall has always been a strong point. Er, up until the whole not eating thing, and g-button insertion.
Anyway, we continue to offer her foods. This isn't always easy. I have spent a small fortune on organic products, and hard to find items (coconut flour and coconut oil...to name a few of the most recent scavenger hunts I've been on!)
Some days she'll eat. Some days she fights. But I can usually get at least one 100 calorie meal down her. She's really open to all textures and tastes. Before the Ketogenic Diet we would season her foods with salsa and lemon juice! The girl loves flavor. Since starting the diet 7 months ago (yes, 7 months have passed!) she has decreased in the amount of food she'll eat and what. We used to think it was because we were hiding meds in the "egg nog" and scared her away. Now I just think she's sick of the same greasy meals. She used to eat broccoli and beef and mayo like a champ, and chicken ranch and green beans were also a favorite. Now she won't touch either one...
So I have made a few new recipes with the new ratio. She loves egg and cheese omlets (pictured above) and has a new found love of kiwi (also pictured above) AND...I just introduced her to chocolate in the form of fudge (pictured above) The eggs and kiwi are one example of a 100 calorie meal. Hidden in the eggs and cheese are cream and olive oil. The wine, of course, is for me. It is a necessary ingredient for me to keep my sanity as I spend a ridiculous amount of time measuring out a 3.5:1 fat to protein and carb ratio.
Some days I resent this stupid diet for taking so much time and being soley responsible for her losing interest in eating (and drinking completely!) Then I remind myself we are only on one daily seizure med. Her alertness and development are soaring, and she only has about one seizure cluster every 2 weeks instead of hundreds a day. So I can live with searching out approved chap stick, lotions, shampoos, and fever reducers. It does work. And it is totally worth the time and effort. And had this diet not worked, we would have tried ACTH next. It would have killed her for sure considering her last reaction to a tiny steroid with Diabetes. So this diet has saved her in more ways than one.
She had seizures late this afternoon...but they are gone now. (she's pretty predictable. the last ones were 2 weeks ago to the day.) They never get easier to watch. ugh.
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5 comments:
We just got done weaning Cody of Keto. Didn't work for his complex partial seizures. He was put on it at 3.5 months old...will be two tomorrow! We are having exactly the opposite problem. He's never known anything but greasy nastiness. They wanted him to drink Pediasure but he gags on it and refuses. Way too sweet. Now were trying Peptamin Jr. He doesn't have great oral motor skills so and is still eating purees but now gags without the oil. Ugghh.. His feedings have always been rough but weaning the diet has really been making me think more and more about a G-tube. I completely understand what your saying about the prep time but hang in there. I found that it is a lot easier to make a few days worth of food at once. It is so, so worth it if its working. Sorry to be windy. You just struck a topic that hits home right now. Take care.
Laura G
https://www.carepages.com/carepages/codygarrett/updates
Naomi's been on the diet almost 16 months and still seizures every day but they're less than before and not clustered.
She ate anything and everything before the diet. Prunes, scrambled eggs, cheese, any vegetable, beans. Basically anything you put in front of her. Now we're down to the same 4 meals every day! Which is easy on me, but I just keep wondering how long she'll keep eating these things. I tried the peperoni pizzas and she spit it out instantly! It was GOOD!
I'm glad you're finding things that work for her!
Chloe loves blended fresh fruit, and I put nutella, peanut butter or avocado in to amp up the fat intake. I'm not sure how that would work with your 3:5:1 ratio, but thought I'd share anyway.
Sorry she had a seizure, but I'm glad they're much better controlled with this diet. If I had to start the ketogenic diet on Chloe, I'd probably have to give up my religion and start drinking too! You're amazing :)
I loved this post & can so relate to the hunt for things that your little girl will eat. I go through a similar situation with my son. If it helps, most walmarts will have the coconut oil (LouAnna if it helps) and Central Market is the only place I have found that carries coconut milk yogurt(in choclate too!)if she is ok to eat that:)
Hi Jocalyn! I have tons of recipes if you need ideas!
My daughter is at 5:1 (yes, you read that right), plus she has a bunch of food allergies that makes her diet dairy, egg, and beef free. So I've had to be really creative! I literally have hundreds of recipes, and since you have dairy and egg at your disposal, you'll have even more choices. :)
I make a lot of Jade's foods with "sauces" like peanut/chili sauce on chicken or lemon/dill sauce with salmon. (You can still use lemon juice in recipes if Kendall still likes it!)
You can mix quite a lot of canola into applesauce.
Just a few ideas that might help.
We've had our share of feeding problems, too. Most recently, when we went to 5:1 (mid-October) Jade would either vomit or gag at almost every single meal. It settled down after a month only to crop up again a week later.
It turned out that her liver was starting to fail. We went back to 4:1 for about a month and after her liver stabilized, we started switching a few meals at a time back to 5:1. Today was our first day back fully at 5:1 and she's eating like a champ. Whew! Food battles are the worst. No seizures are even worse, but man, food battles suck. I am right there with you.
E-mail me if you want to chat about recipe ideas. My e-mail is listed on the About page of my blog. (I don't like leaving my address in comments because it's just inviting spam...!)
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