Thursday, March 22, 2018

Ketosis!

Three weeks ago we made the decision to put Mary on the Ketogenic diet. It's a medical diet and needs to be monitored carefully.  To do the full Keto diet a child needs to be admitted to the hospital.
 
 
 
We knew this and did not try to start her on the diet but we did test foods with her over the past few weeks. We discovered that our little girl LOVES all the fats required. She is a lover of mayonnaise and sour cream and ranch dressing. She LOVES drinking the heavy cream!
 
So over the last few weeks we have been giving her the fats and cutting her carbs.
 
When we arrived at the hospital... within a day at the hospital little girl was in mild ketosis. By Wednesday she was in full ketosis.
 
WOO HOO!!
 
She gets the reward for getting into full ketosis the fastest!! 
 
They have never had a child who loves mayonnaise as much as she does.
 
Her blood levels have been excellent and she is tolerating the full diet well.

 
 
That means that we get to go home today!!!
 
WOO HOO!!!
 
It has not been a bad experience this time around. Little girl has been amazing and yesterday the little boys had off from school because of snow, so they spent the day hanging out at the hospital.
 
 
But sleeping at the hospital isn't the easiest (for me) and little girl and I really really want to go home!!
 


 
I won't lie. This diet is hard. Even though she loves the fats on the diet - she is not a fan of the limited choices she is being given. No matter how much you dress up what is on her plate - the reality for her is that she can't eat her favorite foods. And the harder reality is that she has to see us eating foods she cannot eat.
 
On Wednesdays, volunteers provide free lunch for the families on this floor. It is a HUGE blessing because buying food at the cafeteria is expensive and having both boys here yesterday was going to cost us a pretty penny.  So I took the boys down and filled up a tray full of sandwiches and chips and cookies. It broke my heart knowing I could not give the same food to my little one. While she dipped her chicken and beans in mayonnaise with little gusto (she loved the mayo but was not a fan of the chicken and beans), they chowed down on sandwiches and chips and cookies. She cried. Rob and I wanted to cry with her.
 
It's not realistic to shield her. They need to eat. They can't hide their food from her and we don't want to feed her separately from the family. We will absolutely do our best when we are at home to make her choices of food as enticing as we can. But she can't eat many of the same foods as the rest of the family. It's a cross she will have to bear. It hurts our hearts to deny her food.
 
But seizure free is our goal. And this plus the CBD oil is our best hope.
 
It isn't going to be easy but we are committed.
 

 
We are heading home and gearing up for the long haul.
 
We have been told that we may not see any results from the diet for at least 3 months and to expect to be on it for 2 years.
 
The long haul!!
 
Step one is over.
 
Ketosis.
 
Thank you, Jesus!
 

12 comments:

  1. I'm so glad to hear an update. I hope this is the answer for her. Thinking of you Julia, and your dedication to her health.

    Sue H.

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  2. This is amazing! Praising the Lord with you. Mary looks GREAT!!! xo kel

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  3. Glad to hear that the initial stage of ketosis went smoothly. And the best part is that you get to go home! I always love getting discharged from the hospital because it means sleeping in my own bed!
    I love seeing Mary with her big brothers and that last picture of Mary is absolutely beautiful. Her smile made my day!

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  4. Awesome progress!! Mary is looking so good in your photos ( as are your sons:)
    I understand about doing anything to stop seizures.
    Moving towards more of a Keto diet for myself.
    God Bless.
    Teresa from Canada

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  5. It will get easier! And again, there are SOOOOOOOOOO many options to make her things that resemble the foods she will see you eating, but are safe for her to eat on this plan. It will take some effort from you as her parents to find the recipes (just search instagram, google, and pinterest for #keto #ketodesserts #ketofoods and any other variations and you will find so many good recipes) and do the creative cooking, but it gets easier the more you do it, and even better, some of the stuff you can make for her, will be delicious for you all the eat sometimes as well.

    Cheesecake brownies that are keto safe?! yes! they exist. keto tacos? Just make a shell out of melted cheese! totally exists. Keto cinammon rolls? Indeed!! the dough is made from cheese and cream, crazy enough, but they really resemble cinnamon rolls and of course you get the full fat creamy goodness for a topping.

    It doesn't have to make her cry, it will just require effort, and again the whole family can enjoy some of the meals with her. Salads with ranch dressing and meat? Who doesn't love that (okay, maybe the boys will balk at salad)

    I'm just really happy that you seem so optimistic about this journey for little sister! I'm glad her hospital stay was easy this time. It's nice to think that aside from being off some of the meds that weren't screwing with her mood and emotions that she probably better understands that after the hospital she gets to go HOME. That probably helps a lot with how she feels when there.

    Still rooting for you all the way!!

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  6. What a blessing that Mary loves mayonnaise! (that sounds like a picture book title, doesn't it??) I know everyone is relieved to be home again, this time with such optimism and a clear plan for the future. Well done!

    Susan in Kentucky
    Cousin to 2 from U.

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  7. Congratulations! Her lovely smile says it all ~"I'm going home!" YAY!!!

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  8. SugarFreeMom.com has a ton of Keto recipes that little girl will love!

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  9. Julia and Rob,
    I am so sorry if this is a dumb question but how do you keep your little girl from losing weight on this diet? I have several friends who use it as a weight loss diet. What is the big difference? I would love to know when you can. Thank you & God bless your beautiful family~

    Anfisa C.

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    Replies
    1. To @Anfisa C.: Her macronutrients and calories are probably set to be enough so that it doesn't affect her weight in the way it does for someone who is using for weight loss. If they're giving her high calories, but still keeping her carbs low, and the protein and fat in the right percentages she probably wont lose a bunch of weight. It's a numbers game! (Julia and Rob, correct me if I am wrong here)

      I've been on Keto going on 2 weeks, and am in ketosis, and am doing it for weight loss, so I had my macros calculated to be effective for that and am losing weight but I know if I ate at a much higher calorie content even while being low card and high fat, I likely wouldn't.

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  10. So thrilled that it's working for you!

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