Last week was time to order another box of Cytra-K (for background, see The Blood Acid Chronicles). But the manufacturer is out! Our pharmacy called all 14 other pharmacies in town, and there was none to be found.
The back-up plan is to give Nora 1/2 tsp of baking soda twice per day. But Nora absolutely hates it. We dissolve it in a little bit of water, but we have to fight to get her to take it. Ted has discovered that Arm & Hammer tastes better than the kind sold in bulk at our co-op, but it is little comfort to Nora.
I put a tiny bit in her hot chocolate without telling her to see if she could taste it. It’s like the princess and the pea.
Nora’s doctor has a fax on his desk that he will find first-thing Monday morning asking for a substitute. Any suggestions for other substitutes for preventing blood acidosis?
Hi! I appreciate your stories! I’ve been reading your blog since before my son started his own ketogenic journey. He has been having problems with blood acidity from day one and is hit with nausea and vomiting FREQUENTLY. I don’t know if you have other good suggestions, but we also tried the baking soda struggle for a while. When I couldn’t hack it any longer our keto team perscribed a pill form of baking soda – “sodium bicarbonate” – it’s cheap, found at our pharmacy and we can give extra if needed (he takes three a day, can do one extra for days when there’s more “fro-ups”). He takes it with meds and supplements he’s already taking. Maybe this Is an option for you? I hope it works out for you and Nora.
Thanks for the suggestion Jill! I hope to talk to Nora’s doctor today, and will ask him about that option if he doesn’t suggest it. I suppose it still tastes like baking soda? I wonder if we can get her to swallow it as a small pill instead of mixing or dissolving it.
I’m glad you mentioned the occasional vomiting. Nora has thrown up in the morning a few times this fall, and seems completely fine afterward (although she stays home from school). Is it usually a morning thing with your son too? We can’t figure out if she has a small stomach bug, but maybe the acidic environment in her body doesn’t let it flourish, or whether the vomiting is a side effect of the diet. That will be one of our next questions for her doc too. It hasn’t been a huge problem but I’m starting to wonder what is going on with that now that we have seen it a few times.
Best to you and your son. Sounds like you are doing pretty well with diet therapy–good to know that you are out there too!
Hi! So, my son swallows the pill with the rest of his meds in an applesauce/oil mixture. We cut it in half, but he gets it in without complaints. I’m sure it does have a slight baking soda taste, but nothing like the powder form which we had to do for a while. That was aweful! As far as the nausea, his has been mostly afternoon bouts but it sounds very similar otherwise. Nausea, vomiting then 10-15 mins later going along like nothing happened. My son is VERY sensitive to the whole blood acidity thing. If the diet hadn’t made such a dramatic impact on his seizures we would’ve ditched it LONG ago. He sometimes barfs at night and one time got a stomache bug that messed his system up so much we had to drop him back to a 1:1 ratio for a bit. We also work really hard at keeping him well hydrated, carefully spacing meals and the baking soda tabs (all of which I’m sure you know). Best wishes to you!
Our dietician prescribed a potassium phosphate pill and we get it through our pharmacy. Jaron takes it once a day in the morning with his chocolate cream.
Thanks Amanda, I remembered that you did something like that. I will ask about it. I’m not sure why they didn’t suggest that earlier too.
This may be a blessing in disguise. I was never very fond of the Cytra-K for including saccharin and red dye, and Nora said that it burned her lips of she took it as a drink, and I was getting really tired of making it into Jello every day, and Nora was getting tired of eating it.
Great suggestions! We fight the throw-up as well. Then like your children, are fine after that. In fact we just had one this week. It used to happen alot. I can almost tell when its going to happen. Its usually at times when he fights his meds and they thought of taking them will gag him, then up it comes and we have to start all over. Its so stressful. I think I will ask his doctor about the sodium pills as well.
If you don’t have pill swallowers like my son or your kids are great at swallowing pills, I just ordered my son the OralFlo cup. It helps train them to swallow pills with water. Its 9.99 online. You put the pill in the spout and then when they tip the cup back to drink the pill gets put in the mouth to where they can swallow it and not chew or gag from taking pills.
Blessings,
Holly
Another thought……what about alkaline water? I know some health food store sell it by the bottle and has a pH of 8.5 to 9.5. It tastes nice!
Interesting idea. I’ll ask the doc.
Hi! Love this page! You guys really have put together the ‘recipe’ for the perfect keto diet.
I’m not as clear on how the keto diet helps kids with seizures or what the requirements are, but my son was a brittle T-1 diabetic and we had to deal with ketoacidosis a lot. We managed to avoid all but two hospitalizations (both of them happened while we were traveling during the summer and his insulin went bad) over a 10 year period. (He’s 20 now and doing quite well, but I’m trying to talk him into going Bernstein again which is what led me to this page… it’s hard because he’s a college kid who wants to do pizza and all the rest of the college fun.)
The key was pure water and lots of it. Water gave his body the ability to screen out the ketones and excess glucose that his body couldn’t handle. I know that there are many differences between the bodies of a diabetic who hasn’t had enough insulin and someone on a keto diet, but the root of ketoacidosis is that they’ve got to have the ability to flush the excess ketones out and regain a normal ph. The body will regulate the glucose just fine on it’s own if it has the tools.
I eat a keto diet myself and water is vital. I drink a full gallon a day. That’s way too much for a little kid, but about 32oz of water over a couple of hours would regulate my son when he was small. (Chewing ice helped make it tolerable.)
You guys are my heroes! I know how hard it is to stay on top of this type of thing.
Thanks Shay, that’s great advice. When I look for info on acidosis I get diabetic info and have a hard time knowing what exactly applies to Nora’s situation. Water is always good advice though. We go though periods of pushing the water, then not. Ice is a great idea too. Sometimes she asks for ice and we have some fun ice molds (lego guys! smiley faces! mustaches!). A new water bottle always renews the interest in water too, so that will be on my list also.
Thanks for the words of encouragement. No pukes for a few days now and she has been a tough girl about the baking soda water. To the doctor next week too so we will have more blood tests to compare to baseline.
Christy
There are differences between the ramifications of the acidosis of keto-diet (KD) and diabetic ketoacidosis (DKA).
The upshot: DKA can be immediately life threatening. KD acidosis is detrimental to bone health, and if severe, can potentiate uncomfortable side effects, but should be correctable.
Our daughter takes liquid bicitra dumped in her 1.25L of water. We dilute the carnitine in water.
We are medical professionals who have started the 4:1 ketogenic diet for our daughter 16 days ago. She’s nine and had her first seizure at 35 months. She has a similar epilepsy phenotype.
Thanks for your blog. We look forward to adapting your recipes.
Thanks. Our doctor has told us that if she starts throwing up (for any reason) and can’t keep the bicarb down we might have to get her to the ER for and IV to avoid getting too far into acidosis. But it seems like “how sick is too sick” and what is causing the sickness is hard to determine at home. Thankfully we have never been close, but when we have episodes like this week are on high alert and look for the signs. I have often told my kids that the ER is my very least favorite place in the world.
Nora has also had several cavities in her short life, which I always though must be related to the “detrimental to bone health” effect. What do you think?
Good luck on the diet, and I hope she enjoys the recipes. The most recent ones are the best, as I have learned new tricks as time went on.
Every person is different, but if your daughter has normal lungs, acutely, she should be able to compensate from all but extreme acidosis.
If she’s taking enough base to keep her serum bicarb > 20, that is probably enough.
Thanks again J. I don’t remember her last serum bicarb number (labs about 6 months ago, another one due soon), but it is close to 20, maybe even 18 once. That is why they prescribe something to keep it under control, but he keeps saying that as long as she is not having any other adverse effects that she is tolerating it. Just feels like we are living on the edge of it.
Could the throw up be reflux? Jaron tells me sometimes throws up in his mouth and then swallows it. I have that happen when I am having reflux problems. Our dietician said reflux is common. She said I could call Dr. Wray, but it seems like Jaron will have it for a few days and then be fine so I am going to wait until our next appointment in a couple of weeks to talk about it. Just something else to consider.
Thanks Amanda, I will think about that. When she throws up it’s not a small thing. It’s everything. She rarely even burps, ever (has anyone else noticed that their keto kids don’t have gas? When it happens it’s hilarious to her!) We were scheduled to see Dr. Wray on Friday but he had to cancel due to a family issue, so we will have to wait a little longer.
Nora has been better and taking her baking soda water like a champ. It’s her “power drink” for fighting super villains and saving the world! But that probably won’t work forever 🙂
Dear family, I do’t know if you have solved the baking soda problem yet, but I just learned about your web-site today. I really like the recipes you offer here. I want to suggest 2 things that might help.
My family uses baking soda a lot (meaning 1/2 tsp a day with a cup of water per person) for alcalizing. If you squeeze a few drops of lemon or lime into it it will frizzle and change the taste. It will not change the alcalizing effect and one whole cup of raw lemon juice contains 21 carbs. So if you use 1 tsp it might add some carbs to Noras diet but they’d be very few. Same goes for lime that contains 1 less carb per Cup.
The second suggestion is to use nori to make litle Nora some beautiful vegetable wraps. See info e.g. here:
http://www.livestrong.com/article/328551-nori-nutrition-information/
They are very low in carbs and bring some very important minerals. I just thought I might mention it. You can make them crunchier by toasting them (like Coreans do) over open fire (hold them 10 cm away from the fire until they contract a little) on the gas stove.
Thanks for all the info on your site, good luck and be well.
Best wishes for the 2014 from Iceland!
Thank you Rebekka–and we love Iceland! Ted and visited once several years ago. We love Sigur Rós and every other band that has come out of Iceland. Many of my favorite knitting patterns are from Lopi. We hope to visit again someday!
Back to keto–thanks for the baking soda tip, we will try it! Nora has been taking her baking soda every day now and does all right, but anything to change it up or make it better is most welcome.
Nora like seaweed snacks and she can have lots of them. They are sold in little packages of roasted sheets here by a few companies. We will try the veggies roll idea.
Tusen takk for alt (we’ve also living in Norway, if that isn’t quite Icelandic).
Christy