Just a quick update with a few keto notes that have been on my mind. Nora is 19 months + 2 days seizure free, getting over a nasty cold/flu and looking forward to Thanksgiving break from school.
Still no Cytra-K and Nora’s keto clinic appointment for last Friday had to be rescheduled because her doctor had a family emergency. We wish him the best and are looking forward to getting a new appointment.
Thanks to Ted’s creative parenting and Nora’s 5-year-old maturity, taking baking soda as a Cytra-K substitute is going smoothly. Ted mixes up 1 tsp of baking soda in about 1/2 cup of water. We give her up to an ounce with every meal and snack. On school days she has one at breakfast, then one with afternoon snack, dinner and anything left at bedtime. No more pukies for awhile, so it must be doing the trick and spreading it out over the day seems to help ease any tummy upset.
To convince her to take it, Ted played Mojo Jojo for several days, telling her that if she takes her baking soda she will have super powers like the PowerPuff Girls to defeat him, but if she doesn’t take it then he can take over the world (he was very convincing!) She gulped it down and attacked!
This morning as we were trying to get to school on time, she said “but I haven’t taken my baking soda yet!” and sipped it down all by herself. Although it will never be a yummy treat, it’s also not torture anymore. What a relief.
I also wanted to share some keto updates and success from other families. I cry when I read their history and their bumps in the road because I know what it is like, but I’m also so hopeful and proud to see them overcome. Good attitudes and stories are contagious. Even though I may never meet most of these families in person, I hope they know that we are out here pulling for them, and I know that they (and our readers) are pulling for us too. We are always stronger together.
- One of the first keto families that we connected with online is nearly weaned off the diet, after 5 long years of struggling with Doose syndrome and fighting for seizure control. I don’t have a blog post with the news, but I’m so thankful to keep up with Fawn on Facebook to get the news as it happens. Jade is out of ketosis! We are celebrating with you!
- Amazing KetoCook mom Dawn posted an update at long last. I had the honor of meeting Dawn at the Charlie Foundation conference over a year ago. She has done so much for keto parents everywhere, but her most important accomplishment is seeing beautiful Charlotte through Dravet syndrome every day and continuing to do everything possible to head off a seizure. We have learned so much from you and we are cheering you on always. Your family is an ongoing inspiration.
- And ketokid Autumn from Fort Wayne is in the news for 18 months of seizure freedom!
We have the deepest gratitude for the support we have received from everyone in our lives, near and far. Here’s to a restful and filling Thanksgiving holiday with our closest ones happy and healthy.
Kristy,
I sometimes come over here to read about Nora’s Journey. I remember the day it all started I had just left your house before the Thanksgiving holidays. Its truly amazing to read the journey you all have been on. You guys are a special family and just hope you all have a safe and joyful holiday season.
Hannah
Hannah! We were talking about you the other day! Nora was trying hard to remember you clearly. You are right that Nora’s first seizure was the day before Thanksgiving. I think we hold our breath a little bit at this time of year because of it. Hopefully many more years of smooth sailing will write over those feelings. Thanks for commenting–I will send you an email too!
Christy
Hi, great update, I am so impressed with your strength and the strength of these other families. We just started MAD 8 days ago (I’ve written before about the similar myoclonics and normal development in our kids) and it’s going OK. We are with CH of Philadelphia.
If you have a minute – I do have a couple questions.
How long from diet initiations before you saw improvement with the myoclonics Nora was having? We haven’t seen a change as of yet – still hovering at 4 a day or so….
Butter pops in candy molds are the hit of the last two days.
Also, I am amazed at how unorganized I feel and how time consuming making food has become – I used to be such super organized and a whiz in the kitchen and I really feel ‘off my game’. Do you have any suggetions on recipes I can batch cook and freeze? I need to expedite things around here, especially in the morning.
Thanks and Happy Thanksgiving to you and yours 🙂
Lara O (near Philadelphia)
Hi Lara,
I looked back at Ted’s graph (it’s a little hard to read but I will interpret): http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/10/16/neurologist-visit-and-update/
Before the diet she was having 10-20 myoclonics every day, no days without them. The graph looked like it was on a steady march up which is why we went for the diet.
Within a few days she had a seizure free day, but then it would spike up again. I found through trial and error that when I was tighter with the diet, she had better days. It was a very immediate feedback with big swings day to day for awhile.
When we got to 3:1 in January she consistently stopped having myoclonics. There are a few more blips in there when something went wrong.
I think the doctors would tell you that you need to decide on your goals. If it is seizure freedom, then you might want to up the ratio and get stricter. It’s like a bigger dose of medicine.
On the organization, I completely hear you. Be kind to yourself as you get yourself organized. I’m pretty organized too, and it took a while to find the rhythm. Go for batch recipes! I have several of them throughout the blog. Nora’s favorite lately is the chocolate hazelnut cookies (search for it, it’s fairly recent) which are probably fine for MAD as they are. She gets lots of cream as “milk” to dip or eat like cereal.
Happy to answer any questions, always. Happy thanksgiving to you too. I hear that CHOP has a great parent support program. I want to get that going here, when I get to the next level of organization!
Christy
I was surprised you needed so little base.
Consider asking your doctor to discuss what bicarb targets the peds nephrologists at Doernbecher would recommend. I’d anticipate it’ll be > 20.
Congrats on your milestone. We are trying your bread today.
Yes, they want her to be at 20. at least. We did some extra in-between blood work for awhile and they just decided that she seemed to tolerate being lower. We tried upping the cytra for awhile, but it was a struggle and as long as it doesn’t seem to cause illness, we all decided that the fix was worse for quality of life. More bloodwork next week!
Can you elaborate on what dosing you expected? Our doctor’s sodium bicarbonate prescription is 1 tsp per day, which is about 40 mEq. I checked the dosing information here http://www.drugs.com/dosage/sodium-bicarbonate.html for pediatric dosing for metabolic acidosis and using the formula shown, I calculate the same dosing for Nora (40 mEq per day.)
I misinterpreted your dosing of Cytra-K. If you’re getting 40 mEq/day from that, then that’s quite a bit. The readout is the serum bicarbonate. If low, regardless of how much you’re taking, you need more.
That said, we are definitely in the same situation regarding picking our battles.
The bread was fantastic.
We just got our labs back.
Our daughter’s bicarbonate was 27, despite her being 24 kg, on a 4:1 ratio, and taking less bicarb.
Dosing is empiric. I would try to get serum level to 20, if possible. We will cut back on bicarb supplementation if a second test shows we’re making her alkalotic.