The Blood Acid Chronicles

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.

Nora plays library by creating a kind of rug-size book puzzle. I'm always amazing by what she can come up with when left to her own devices.

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.


Brief update

Things are going well.  It’s been two weeks since Nora’s last tonic clonic seizure and almost two months since her last true waking myoclonic seizure (!).

We got the OK from the doctor to decrease her Depakote.  He’s advocating a pretty cautious plan: a 25% decrease in medication for one month, then we’ll check in again.  I feel conflicted about this.  On one hand I understand the caution and am happy to have the decrease.  On the other hand, why not decrease it as quickly as can be done safely?  A month is a long time and other things (e.g., constipation, illness) can arise and cause more seizures, which would make it difficult to tell if it was the medication decrease or not.

But in any case, clearly she is developing fine while on Depakote, and has a good quality of life, so a slow wean schedule is not a bad plan in that sense.

After the last tonic-clonic we increased her diet ratio to 3.5 and their doesn’t appear to be any problems with that.  Nora is eating well and in good spirits.

Christy and I spend 1-2 hours a day planning and preparing Nora’s meals.  It’s a lot of time and effort, but we also have routines now.  We have a spreadsheet set up to quickly calculate her typical meals.  I am often struck by how well Nora eats.  Yes, the diet is unbalanced in the sense it keeps Nora on a delicate knife-edge of ketosis: too much one way and she is out of ketosis, too much the other way and she will get sick from acidosis.  But just looking at a plate of her prepared food it strikes me how well she eats: avocados, fresh sweet peppers, raspberries, apples, peanut butter loaded with vitamins and supplements, hot cocoa, tea and cream, coconut oil and cream cheese on a scone, string cheese, flax crackers.  It’s all very healthy and high-quality food, especially considering the soda and fast-food many kids live on.  It’s a lot of work, but I am so thankful we have this tool for her.  I am so thankful we can feed her well while also protecting her from seizures.