Wednesday, March 14, 2018

Choices and Changes

Two months ago we were in a very dark place with little girl. Seizure medication had taken her captive. She couldn't focus. She was violent. She was miserable.
 
Her seizures were well over a hundred a day.
 
We were despairing on so many levels.
 
Seizure medicine isn't something you can just start and stop willy nilly. It's a slow process to start the drugs and an even slower process to wean off the drugs.
 
We gave little girl her last dose two weeks ago.
 
We despaired two months ago. We wondered if the sweet child we brought out of the orphanage would ever come back. It was a dark dark time.
 
She's back.
 
 
She's back to her ornery, little, cute, happy, get into trouble, seven year old, toddler-self.
 
She wakes up smiling and loves life.
 
She's not perfect. She wasn't perfect before. But her brain is no longer being fried by drugs that did nothing except mess her completely up.
 
Thank you, Jesus!
 

 
 
When your child has as many seizures a day as little girl and everything being tried is not working, you come to a point where you have to think outside the box.
 
Trying another round of drugs just made us want to vomit.
 
We came to the hard conclusion that conventional medicines are not going to help little girl's seizures.
 
Almost three weeks ago we started her on CBD oil.
 
Then, with our first doctor's blessing, we transferred to a new doctor who will be overseeing Mary on the Ketogenic diet.
 
Big choices and changes.
 
The CBD is easy. We give her two doses a day and just have to time the doses so that she isn't getting them within two hours of her other meds. She is still on one seizure medicine and we have to be careful that the CBD oil isn't interacting with that medicine.
 
The diet... not so easy.
 
It's a huge deal.
 
I fly to Texas tomorrow for the Great Homeschool Convention in Fort Worth. I come home on Sunday afternoon and on Monday Mary will be admitted to the hospital and will start the diet. She will be in the hospital for 4-5 days.
 
We are doing the Classic Ketogenic diet. Severe epilepsy means no shortcuts for little girl. There are modified diets out there that would be easier to do but after much discussion we made the choice to go all in.
 
We have spent the last few weeks getting ready for this big change.
 
Little girl has been slowly switching from a mostly carb diet to a mostly fat diet. I call it the mayonnaise diet. It's a very strict diet that involves weighing foods and counting carbs, proteins and fats. She will be on a 4:1 ratio. For every one gram of carb (protein and carb combined) she has to eat 4 grams of fat. Most fruits, potatoes, rice, pasta, sugars and more are all too high in carbs to be allowed.
 
For the most part she hasn't minded it. We are working hard at putting food on her plate that she enjoys. And we are easing her into it slowly.
 
It's harder on us. It hurts our hearts to have to deny her foods that she absolutely loves. It hurts to know that in a few short days - the foods that her brothers get to eat will be off limits to her. We aren't putting our entire family on the diet. It's not realistic. We will be removing some foods and making changes in how we eat as a family. We will be rearranging our kitchen and pantry to get foods out of reach. We will be working hard to find alternative foods for her to eat. We've bought recipe books and are experimenting with this and that.
 
It would be a bit easier if she could communicate and we could explain to her why we are doing all of this. Right now she is too new to the English language, has lost too much of her native language and honestly is too emotionally little to explain it even if we didn't have the language barrier.  She will just have to trust us. And we will have to work hard to find ways to make this diet as appealing as we can.
 
CBD and diet are not quick fixes.
 
We've heard the miracle stories where someone starts CBD and in a matter of days they are seizure-free. We've heard the same stories for the diet. Those are miracle stories. Almost three weeks on CBD and two weeks on a modified Ketogenic diet and little girl's seizure level is still ridiculously high.
 
We've been told to expect to be on the diet for three months before seeing any results.
 
We've been told it takes weeks and months for CBD to build up in the system.
 
We are in for the long haul.
 
But it's okay.
 
 
 
Our funny, naughty, into everything, singing, laughing little girl is worth the long haul.
 
 
 

10 comments:

  1. Grateful she is doing better. Friends of ours at church use cbd oil and their son hasn't a seizure in over a year. Praying the diet and oil help her greatly.

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  2. I really commend you for doing this. Also in a time where she is trying to bond and understand and compare to the boys. I am familiar with both of these new things and I will be praying that you see a difference. Your family is in our prayers. I believe God will bless this and your future will be different. You guys are really awesome! We love you! Melody W.

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  3. I will join in praying for these new steps to be effective for Mary. Stay strong, you are following the way the Lord has given you. He will walk in it with you. xo, kelly

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  4. Christine LeveretteMarch 14, 2018 at 11:13 AM

    Thanks for sharing. We will be praying for supernatural grace, patience, and healing will be upon you and your daughter. We hope to have a chance to meet her this summer. Lots of love to you. - C &C

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  5. Praying for Mary Sasha, and for you and for the rest of the Nalle family as you implement these difficult decisions. I hope success will come soon and unmistakably.

    Mary Sasha looks absolutely radiant in these latest pictures - red is surely her color! She is a beautiful little girl.

    love from
    Susan in Kentucky


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  6. There is a marked difference in this little child that is glaringly obvious just from pictures. Everything about her is softer. From her eyes to her face to her body language. She seemed stiff in pictures with haunted eyes. I am not saying this to make you falsely encouraged, but please know that even if you do not have results that can be measured, changes in your child, good changes are visible to people who have never seen her in real life.
    Whatever you are doing is working. Your love, your devotion, your prayers are all working friends. Take heart. Some day soon you will see measurable results.

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  7. These pictures are wonderful to see. I am happy to read she is making some progress against the seizures. I am sending love and comfort for the whole family as you make these changes.

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  8. I'm sure you've already got resources, but just incase you'd like more, my friend is a dietician who does Keto consulting. https://www.facebook.com/ketoconsulting/
    Praying for good results.

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  9. Praying for your family. She looks wonderful though I know things are still very hard.

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  10. Praying this goes fantastically well.

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