Monday, November 11, 2013

2 week update

I'm sorry to all of you who have been waiting for an update on Jonah. I have been so tired at night that I haven't been up to writing a post. 

Jonah is doing great with his new diet! He eats it wonderfully. Things he never used to eat like macadamia nuts he even enjoys enjoys and asks for now. Macadamia nuts are on his free foods list. He is allowed one free food each day if he is really hungry. So if he gets really hungry we are allowed to give him 1 macadamia nut, 3 black olives, 25 grams of lettuce or 3 filbert nuts. 

It has been a huge gift from God that Barb and Jim have taken on the huge task of preparing Jonah's meals. It really is not an easy task. It can take hours to make a few days worth of food. The fine tuning process like how much raw ground beef will it take to make one small  hamburger patty that needs to weigh 27 grams. 

We are really thankful to all who have stepped in and blessed us as we try to heal Jonah's brain. Thank you to all of you who continue to lift Jonah and our family up in prayer, we feel it. Thank you to my mom who has been coming over EVERY weekday to help out. Thank you to everyone that has donated supplies. We are using every single one, from the pack it to the small containers to the tiny spatulas. Thank you for the meals you had given the rest of our family as we are still trying to figure out how to feed Jonah his "magic" food and then also provide a decent meal for the rest of the kids at the same time. Thank you for monitary gifts for the medical bills that are pilling up faster than we can pay them. We are turley blessed. 

So, the question of the night you guys are probably wanting I know is....

1. Has the diet helped? In short, yes, I think so. Usually if he has a seizure now it is usually trigger provoked. For instance, if he is very upset and crying. I am comfortable with him not wearing his helmet. 
2. Is Jonah still having seizures? Yes, but I would say less. The only way to know for sure would be another EEG. At the hospital they said he was having 3-6 an hour, which of those we would only see maybe 2-3 per day. Today he didn't have any! 
3. Is he producing ketones like he should? The first 2 weeks have really been all over the place. One time I will get a negative reading and the next small and the next moderate. So it has really been changing a lot. His dietition has already increased his ratio from a 1:1 to 1.5:1. Today though he had very large ketones all day. He haven't had that high of ketones since we left the hospital. So that is great, hopefully they will stay up so we don't have to increase the ratio again. Every time we have to increase the ratio he gets less carbs( fruits/ veggies) and more fats. 
4. Does he get hungry with limited calories? Yes, we are working on that. It is really hard when he is crying because he's hungry and it's not time for the next meal yet. 

Jonah eating his veggies at grandmas
His tiny hamburger
This is his favorite meal. He asks for eggs everyday. Bacon 5g, egg 30g, cheese 5g, butter 10g, fruit 80g, veggie 80g, cream 55g


  1. Thanks for the update-sounds like you are all adjusting to this major life change. God bless Barb and Jim for helping with the meals! Looks like you are using the little spatula, etc. Do you still need a little electric whisk thing for cream, etc.? I have one that I got at the Mart and it works amazingly well-ask Scott Bottolene about it! I'd be happy to give it to you if you are interested-just let me know. Continuing on in my prayers for all of you-lots of love too! Auntie Gail

  2. I'm happy to hear that he is transitioning well. It's also amazing that they started him on such a low ratio! I think that will help so much in the long run. We were at 4:1 for a while and that was difficult to say the least. Ben was on 3.5:1 for the majority of the time. We will continue to pray for Jonah and for the rest of you as well. Laurie

  3. Thanks for asking, Gail. At this point we do not need one. Barb and Jim have making EVERYTHING!
    Laurie, I guess I don't completely get the ratio thing yet. At the Mayo Clinc they start kids on a 2:1 ratio and go up or down from there. At 2:1, his ketone production was 160+ every time we checked so they lowered the ratio to 1:1. Well at home, it was really all over the place but more small-moderate than anything. So, our dietitian raised it to 1.5:1. We'll see if he has to go up again. I hope not, but I also would like complete seizure freedom.

  4. I think that ratio is a great place to start specially if it's been effective. Did you know there is a keto support group on yahoo as well as the Doose one? I learned so much from these women. I wish that we had taken blood ketones, because Ben was drinking a crazy amount of water towards the end of his run with the diet. I think his ketones were diluted in his urine. I think blood ketones are a much more scientific, objective and you can keep better records as far a seizure control goes. Our team preferred the urine, but if I were to do it again, I would request blood. Although getting a finger prick daily would not have been fun either. Hang in there!