This diet blog has been a little bit quiet lately, which is a good sign. It has been over 3 weeks since Nora’s last seizure. We’ve made some changes since then, so I thought it was time to catch up on some details now that we seem to be settled into a groove.
We have not fully explained the blood acid issues here–and I personally don’t understand blood chemistry issues completely, but I will do my best to explain. When Nora had her blood chemistry done over one month ago, they found that her blood was a little too acidic. If the blood gets too acid or too alkaline, any person can get sick. If it is too acid, we have been warned that she will get generalized symptoms like lethargy and vomiting. For a kid on a normal diet, parents would assume it is just a virus that will pass. If Nora gets sick and the blood acid issue is not treated, it is life threatening. Keto families learn that flu-like symptoms can be serious, and our doctor recently mentioned that getting a virus can push the blood acid issue farther and require hospitalization. It is something that we have to keep an eye on and control to avoid compounding problems.
High blood acidity is a normal side-effect of the keto diet because the fat is broken down into acid bodies that are then used for energy. In addition, she is getting valporic acid (Depokote). She’s got lots of acid-bodies running around in her bloodstream all the time. Some doctors automatically prescribe an alkaline solution with the diet to guard against acidosis. Our doctor waited until her blood tests showed mild acidosis (although she never got sick) so now we are giving her an alkaline solution to keep it in check (a bicarbonate is the ticket–such as baking soda–or something that breaks down into a bicarbonate, such as potassium or sodium citrate).
Getting the right solution proved tricky. The first prescription was for a potassium citrate solution that touted it’s “great cherry flavor.” Carbs! One solution had sucrose–a sugar. Not gonna work. Another version was sugar-free, but had sorbitol, a sugar alcohol, that does break down into a small amount of sugar in the body so it could be used for diabetics but was not appropriate for Nora. She can have 10 g of carbs per day, and the prescribed amount of the sorbitol solution was equivalent to about 4.5 g of carbs. Not worth the trade off. Thankfully I recognized the potential problems before giving her any of it and kept hounding the doctor’s office to find an alternative. Our pharmacy was very patient and helpful also. During this struggle to find an appropriate supplement (which was doubly bewildering because one would think that the doctor’s office would have figured this out by now), we were giving her 1/2 t of baking soda in water morning and night. It tastes terrible, but she took it like a champ and was rewarded with a frozen raspberry for her bravery.
Finally, the dieticians and pharmacy came up with Cytra-K, which is a packet of crystals mixed with water to make a fruit punch drink, sweetened with saccharine and colored with red dye #3. Sigh, not our favorite combination of artificial ingredients, but it is effectively no-carb and Nora adores it. Most of us survived years of daily Kool-Aid, right? We were afraid that the sweet taste would interfere with ketosis, but it has been no problem at all. Her first dose was 1 packet per day, mixed in the morning and divided up between breakfast and dinner.
I took her in for a blood test again this week (thankfully a finger prick, she is so very brave, and we ask for Ericka at the Corvallis Clinic lab who talks in a silly voice and adores Miss Nora). Her acid levels are still a bit too high, so now she is having 2 packets of Cytra-K per day. When Dr. Wray called to tell us to increase the dose, I told him that Nora would love him even more. She can’t get enough of it. I’ve started freezing a bit of her daily dose into icy-pops for an afternoon treat. He also thinks that she will not need another blood draw until we see him again in July.
Nora continues to thrive. I have been more anxious than ever lately, wondering what will happen next. But we remind ourselves that time is on our side. Every day that passes is another seizure free day, another day on the diet, another day of maturing and growing for Nora’s brain. We marvel at the slew of supplements that she gets to keep her body functioning properly on this knife-edge of hard ketosis. But without knowing our daily regimen, Nora is just another crazy-cool-almost-4-year-old kid, for which we are crazily thankful.
Great news about the 3 weeks seizure-free! Have you guys heard about this research project? Fawn, Jade and I are going to participate. http://overcomingmovementdisorder.blogspot.ca/2012/05/doose-syndrome-research-study.html
Michael, I read through some of your blog. Your feelings and experiences with Jade’s epilepsy is so similar to how I’ve felt. Especially about feeling pessimistically optimistic.
Hi Christy, did the doctors ever tell you what level of blood BHB to shoot for? I know that 4 is the minimum and 15 to 25 is ketoacidosis. When you thought that her blood was too acidic, what level did your meter reach?..thanks
The urine ketostix were our daily (or at least weekly) test, and there we aimed for 160 mg/dL (the darkest brown/purple color). It was very rarely below that during the two years she was on 3.5:1.
We dug up some old blood work and found that in March of 2015 (she’d started to wean at this point), she had a BHB of 25.4 mg/dL and 2.3 mmol/L. In Dec of 2013 when she was full on the diet, her BHB was 5.6 mmol/L. We found another test from 2012 that lists it at 48 (which I assume to be mg/dL.)
In general she did seem to run on the acidic side. She took Cytra and/or baking soda for a long time to help combat this too. (She HATED the baking soda.)