Ketogenic wean and sharing life



Larkin officially came completely off her Ketogenic treatment diet as of July 1.  We weaned her down over a 2-month period and she has done beautifully!  No signs of the dreaded “s’s” and she is her usual sweet, laughing, pulling my hair too hard, self.


Continuous watch for regression is necessary, medications to support her bone growth until at least September and then we will do a blood draw to ensure all is well.


Here is the awesome part that if I tell you the story in person – it makes me cry.


I was sitting in bed with her relaxing just before bedtime.  She had just come from her bath, smelling sweet and wearing just a diaper to cool off before jammie time.  I was eating a late snack (remember I am pregnant so don’t judge) of summer sausage, Ritz crackers, and cheddar cheese.  Larkin was watching me eat as my hand went from the plate to my mouth.  Breaking a Ritz in half – I offered it to her and she took the cracker and snacked away.  I offered her the other half and she reached out, took it from me, and repeated this until I decided to throw the cheese into the mix.


I put a piece of cheese on my palm, she took it with her little fingers, and down the hatch, it went.  This continued for a bit and of course being a parent of a child with special needs, you are always looking for ways to make fun times into a learning experience.  I offered her a piece of cheese and a cracker on my palm.  Larkin looked at both and I was thinking she would grab the cracker but nope – she grabbed the cheese first, ate it, and then came back for the cracker.


Now we are not only sharing a snack but MAKING CHOICES!!


At this point I am laughing, crying, and totally overwhelmed by the sheer joy of sharing a snack with my little girl.  I called Andy into the room and showed him our new adventure.  Of course, he was taken aback as our old habits are dying hard.  He was worried that she shouldn’t have the food, worried that she would suddenly begin to seize again.  We have been so diligent with EVERYTHING, weighing food, reading nutrition labels, and protecting her at all costs to keep her in ketosis.  Now — we can relax??  Who knew???? Who knew it could be so much fun!!??


We have been enjoying all sorts of “new” stuff in our house and at Grammies.  She has had grilled cheese, crackers, lots of bananas and other fruits that were limited before, and today it was peanut butter and jelly (sugar free albeit) and Grammy said she couldn’t get that into her mouth fast enough!


Food is our common denominator and we have not really been able to share a meal with Larkin for over 2 years.  While she is not cognitively aware of McDonalds, treats, and pizza, we have missed one of the simplest moments of life that most of us treasure, time at the table and sharing good eats.


No snickers or ice cream and such that are simple sugars just yet.  My heart and stomach can’t take that stress.  In due time.  For now, picture a little girl and her mom sharing treats such as apple slices, crackers, and giggles. 


On those days and during those times when it feels like we won’t ever make progress, when we don’t fit in with any particular disability group and watching those make leaps and bounds we may never see …. she and I have snack time. 





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11 Responses to Ketogenic wean and sharing life

  1. Jen says:

    That’s wonderful Amy. I’m so happy for you all. Thank you so much for sharing this.

  2. Marie Smith says:

    That’s awesome! Snack time! I love it!

  3. Stephanie says:

    I am sooo glad for you and proud of Miss Larkin! That kind of thing usually gets me at Christopher’s birthday – knowing he has never tasted his own b-day cake. Snack away sweetheart – snack away.

    Hope the rest of you are all doing well. Will you be able to get to the Buddy Walk? It is probably close to your due date. Hope to see you there with the new additions!



  4. That is soooo awesome! So happy for all of you. I hope that one day I can have a similar experience with Sam… amazing amazing amazing. It always blows my mind that it is the small stuff, that most others would take completely for granted, that can completely overwhelm us and fill our hearts with so much joy and possibility and hope. Doing the happy dance for you all!

  5. Melanie says:

    What a lovely reward came from snack time! Beautifully written…I pictured that moment just as you wrote it. You know what they say about food that is shared…SOUL FOOD! Congratulations on that beautiful accomplishment. Hugs to you all!

  6. cathy says:

    How precious! I’m so thankful that the weaning is going so well for you and your little miss. I’ve said it before, people need to celebrate their successes-whatever they may be…because the smallest thing to one, can be the biggest accomplishment to another. I’m not into comparing my child (or anyone else’s) to another-it’s their accomplishment and shouldn’t be dimmed by comparison. All accomplishments are cause for celebration. It’s a milestone that was shared by you with friends, family and fellow travelers. Can’t wait to hear about Larkin’s next accomplishment and share in the joy that it brings us all.

  7. Zoey's mom says:

    I look to Larkin and some of our other little buddies, for the inspiration and guidance as we continue to journey our very complicated road with Zoey.Moments like these, with your sweet little girl, lend hope and promise for a future filled with possibility for me and my very own love .Magical Amy.Simply magical.

  8. Ecki says:

    That is just beautiful. Yes, food certainly has such social and emotional power.

  9. RK says:

    What a great new experience to share…a snack! I’m so excited for you…and HER!! I know I’ve thought millions of times about how it will be someday to sit down with Braska and actually see her pick up food and put it in her mouth…and chew. I dream of chewing. Our girls are just plain perfect, in my opinion, but we’ll be happy to celebrate their accomplishments, small or big, as they continue redefine perfection every day.

  10. Amy says:

    woohoo. i am crying with you .. so proud of larkin!!! oh amy..

  11. Renee Garcia says:

    What a great post Amy! One day I can’t wait to be able to come visit and we can ALL go out for ice cream together!!! 🙂

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