Prep-ing 4yo for Keto

[rackelsmom]

That sounds good! I forgot to mention to you that we don't do the cream straight, it's just too thick so we do it thinned with a bit of stevia and bickford. Sorry...

We've been praying for you all and last night Rachel reminded me to pray for her food friends, so sweet.

You might want to check and see if she might enjoy some yogurt. Our dietician gave us a recipe for that and the nice thing about it is it's got ratio in every bite, so if she doesn't feel up to eating all it's okay, she still got her ratio.

Ours is a 585 calorie 4:1 ratio

26g fruit
92g sour cream
110g 36% cream whipped
sweeten with Stevia.

Always our go to if she is picky...

[katie's mom]

Thanks, for the encouragement, Dutch mom!! I appreciate the perspective & stat's!!

[katie's mom]

Seems like I'm always running 1+ person behind with my replies!! Ann - how sweet of Rachel to pray for her food friends!! Thanks, for the yogurt recipe, too! Sounds like something Katie might like!

[zuegenc]

just wanted to check in on katie and see how the progress of the diet is going? its so hard in the beginning especially if you dont see the miracle results right away but i have been thinking of her and you and hoping all is well ...

[katie's mom]

Thanks so much for your interest & support! It means so much to me!!

Brief update: Katie's stomach has settled down pretty well. Her only vomiting episode since Monday has been this morning and we think it was the way she was served oil rather than excessive ketosis. She has been perking up cognitively for various windows of time throughout the day, but her seizures are still pretty frequent for the rest of the day. We definitely believe that we are on a slow but steady path to improvement and I will try to keep updating you as I can!!

[rackelsmom]

I'm so glad to hear that it's going better. The windows of cognitive clarity will increase. Just wait and see! We will continue to pray for her and you as you continue on your adventure. Blessings to you all!


Ann

[katie's mom]

Here's another update about Katie:

NAUSEA: Hasn't thrown up since Friday night. I hope the worst of this is behind her.

OTHER PROBLEMS: Katie's engergy, alertness and seizure activity is still fluctuating a lot (although the seizures are greatly reduced - down to 10 to 40 a day vs. 100's a day). The biggest issue has been periodic lethargy. We don't know if it is due to low ketones - they have been dipping down to 1+ (20), especially in the mornings, which may be influenced by the fact that we reduced the cream to stop the vomiting. Also, she has been having trouble with constipation. She's on Miralax daily but it took her over 5 days to have a movement Saturday after which she perked up a lot. But she hasn't had one since and has slowed back down a lot. We are communicating with our dietician about how to make adjustments.

KLONOPIN QUESTION: Dutch mom, you have been a great source of information for the Benzos. As her seizures have improved & the threat of non-convulsive status has waned, we have been holding off on the Klonopin. It was originally prescribed as an emergency adjunct but on the weeks before the diet she needed at least twice a day. Now we are down to once a day or none a day. Do you think the GABA threshold interaction may be causing some of the inconsistencies we've seen with Katie? Especially since she's been on Klonopin since late March?

Overall, though, we have been VERY ENCOURAGED by and GRATEFUL for the diet!!

Here are some of the major victories we achieved after our 1st Keto week:

BEFORE THE DIET: Katie had 100's of seizures every day (stares, head drops, etc) & was usually unaware of what was going on around her; we had to repeat everything we told her 3 to 10 times to get a response (often didn't know we were talking to her due to seizure activity); had slow/slurred mono-syllabic speech; had lost most of her personality/rarely smiled/eyes stayed "glazed over;" had incontinence episodes several times a week, sometimes didn't even have enough energy to stand or sit, was losing motor skills - couldn't write or even turn pages in a book like most 4 year-olds can

AFTER 1 WEEK: Down to 10's of seizures every day (mostly stares, not many head drops), usually aware of her surroundings, responds immediately to someone speaking to her, improved speed/annunciation/complexity of speech, her old happy personality & the spark in her eyes is returning more & more every day, no accidents at all, more energy, better motor skills.

[zuegenc]

katies mom that is good news! that you are seeing any signs of progress is a good first step and hopefully with tweaking the diet you will reach greater success...its alot of tweaking the 1st few weeks.. for us i found oils to be better for dylans ketones then the cream we use lots of canola oil and 3 doses of MCT oil everyday..you should ask the dietician about mct oil it has helped us so much in keeping ketones high and dylan will take it right out of a syringe... good luck !!!

[rackelsmom]

I'm so happy to hear of the progress Katie is making! It's exciting when they begin to regain the things that had been stolen by epilepsy. You both have our continued prayers...

[Kayleesmom]

Hey Kristi,
Just wanted to let you know that I am this site now. Katie is so cute. Thanks for letting me know she is doing well on the diet. I am so happy for her and your family. Let me know if I can help in anyway at all.
Talk to you soon,
Leslie

[skillefer]

Hmmmm...well, have you considered trying a Magnesium supplement for the constipation?? It works very well, and it helps lower the number of seizures in some people. I take 1000 mg. a day, with my neurologist's blessing. If I take more than that, the stools get verrry loose. Since Katie's little, maybe 200 mg. a day would work for her. Then, make sure that she's drinking enough water. Her neurologist might have a better idea about the amount of Magnesium.

[becool]

@katie's mom

Hi Mam
Hows Katie now?