Monday, September 15, 2008

Keto Diet Deep-sixed

The big news today came in the form of an e-mail from the dietician giving us the go-ahead to completely go off the ketogenic diet! This means she can start eating whatever, whenever, wherever. It also means that we don't have to measure any more formula. We can also move back to liquid medicine, and don't have to grind up all her meds in a pill-crusher. This is a big thing. Please pray that she make a smooth transition, and that she remain seizure-free. She's almost 3 month's seizure-free.

Annie did catch a sinus bug it seems, so we're giving her stress doses of hydrocortisone to help her fight it. She doesn't seem to be too bothered by it, and did well in school today--really her nose is only runny in the morning. Oh, and when I picked Annie up from school today, nurse Moira said she counted 7 words so far. Okay, I'm even surprised about that. And I think I figured out what her sound "Ey-A" is--it's the last 2 syllables of big sister Olivia. Makes sense.

Anyway--that's the news for today. Thanks again for your prayers for no seizures, and for this cold to make a quick exit--and for those words to keep on coming!


PS. Could I ask for a couple of other requests?

1. Pray for more movement--that she WANT to move around the floor, either by scooting or crawling or walking.
2. Pray for complete healing of her right hand/arm. She has been reaching more with her left arm/hand, and uses it with quite a lot of dexterity, but her right arm/hand just isn't getting where it needs to be.


aunt rebecca said...

Dear Jesus, Please heal Annie's runny nose; give her a seamless and seizure-less transition off the keto diet; help her to 'ambulate' in all the ways that are right for her age; and heal her arms and hands so that they are both working perfectly...and to just wow us all - why don't You go ahead and make her ambidextrous? You are so obviously working her little brain cells and connections every day and we THANK YOU!!!!! Thank You for her words, Thank You for no seizures, Thank You for the fact that she 'did well in school' yesterday. Thank You for everything! You are a great God and we are in awe to watch You work according to Your awesome power and perfect timing.

Gretchen said...

Okay...prayed my own prayer whilst reading your post. Prayed Aunt Rebecca's prayer just now. Will cover her in prayer all day as I think of the Sullivan fam. God is sure gonna be tired of listening to me, isn't He? ;)


Fawn said...

Hi Jean,

I stumbled across your blog today as I've been looking for stories of families who use the ketogenic diet to control seizures (trying to decide if it's something our family should do to treat my daughter's epilepsy).

I've never heard of anyone being weaned off the diet after just 3 months of seizure freedom, but I am excited for you! I'm sure it will be a huge relief to be able to stop all the calculating and weighing of foods. :)

I wish you and your family all the best, and continued healing for Annie.



Annie Sullivan said...

Thanks, Rebecca for your prayers--I appreciate every one. And, Gretchen, maybe God will get tired of hearing your prayers and then ACT QUICKLY like He did for the widow dealing with the unjust judge!! (Luke 18:1-9)

Fawn--I left a message on your blog, but then I thought I should write here, too. We started weaning off of the keto diet in June because we thought the keto diet actually caused more seizures. It seemed to be in conflict with her Addison's medicine--the keto diet making her blood sugar low, the Addison's medicine keeping the blood sugar high, and the result was seizures. But--in June we also began giving her more water, and we adjusted her seizure medicine up. So maybe that helped too. Bottom line--God has used those different things to keep the seizures away, and we are thankful! I pray the same for little Jade.