Illness Preparedness Plan

Disclaimer: This is not personalized medical advice. It is intended to raise awareness of potential implications of treating illness while on the ketogenic diet. Contact your ketogenic diet team and primary care doctor to set up individualized protocols in the event of illness.

It’s cold and flu season. We’ve already been through a few minor colds this fall and early winter, but we are thankful that none of us have suffered much beyond a cold. It feels a little unfair when your keto-kid, who is already under medical treatment and scrutiny everyday (as much as we try to be “normal”), suffers from a virus or bacteria that takes over and makes her feel miserable.

But for a keto-kid, a typical virus or bacterial infection has the potential to spiral into a prescription to treat it, acidosis and/or a hospital stay.  If not handled properly, a medication or hospital stay has the potential to spiral into a loss of ketosis. A loss of ketosis has the potential to spiral into new seizures. All from a little virus? Yes, so be prepared.

Some of this information was gleaned from the Charlie Foundation Symposium on the Ketogenic Diet, which I attended in September. Other information came from our ketogenic diet doctor in the letter that he sent to Nora’s pediatrician after our last appointment with him (it’s nice that he copies us on the coordination of care letters). I’ve been intending to create a 1-page cheat sheet of do’s and don’ts in the event of an illness that goes beyond the sniffles, and I think every keto family should be aware of these issues if your medical team has not brought it up with you.

Talk to your doctors and make a plan for illnesses. As the parent, you are the one that is constantly in the room when your child is receiving medical care, and you are the last line of defense in making sure treatment is consistant with the ketogenic diet.

Prevention Prevention Prevention!

Ted has instituted a strict hand washing policy at our house, and it’s reinforced by both me and Nora’s nanny, Laura. Nora is indoctrinated: after using the bathroom and before eating, wash hands while singing ABCs. We also remind them to wash hands after we come back home from anywhere. We meet occasional resistance, particularly when Nora is hungry. We also meet sibling rivalry when both of them want to crowd into the sink at the same time (sheesh). But clean hands are the most effective way to avoid illness.

Get a flu shot! Our whole family had their flu shots as soon as possible this year. During our last visit to the keto clinic in October we asked about the risks and benefits of getting a flu shot, and Dr. Wray overwhelmingly was in favor of getting the shot. He tried to arrange for both kids to get the shots before we left his office, but the hospital wasn’t ready with the kids shots yet (he was frustrated!) They had to wait a few more days, but got their shots at their home clinic and had no problems beyond a sore arm. A dose of prevention.

Medications

The Charlie Foundation Symposium included a great talk by Michelle Welborn, PharmD (Doctor of Pharmacy). She went through several drug interactions and considerations for kids on the ketogenic diet. It didn’t occur to me before this talk that there might be common prescriptions to avoid. When Nora is sick and we have to take her in to urgent care or the pediatrician, I would not expect them to be aware of these details of the ketogenic diet so I will bring in my list of “don’ts” so that we can find the best possible course of treatment.

Many viral or bacterial infections in the respiratory system lead to inflammation which is commonly treated by steroids. However, be aware that steroids are anti-ketogenic. Using a steroid may decrease ketosis, which could potentially lead to a resurgence of seizures. Make sure that your pediatrician is aware of that fact and consult with your ketogenic diet team. The benefits of the steroids might be worth the risks of decreasing ketosis, but your team might have other treatments or give other recommendations for maintaining ketosis while on steroids.

Antibiotics are also commonly used to treat bacterial infections, from ear infections to pneumonia. Of course, the children’s formulations of the pink liquid will be full of carbs, so you will have to find an alternative delivery method (which we have thankfully not explored yet, but it’s worth noting). Michelle said that a class of antibiotics called cephalosporins (e.g., Keflex) are known to increase seizure activity in general. I’ve tried looking for more information about other antibiotics to avoid but have not found anything, so ask your doctor if there are antibiotics to avoid, based on his or her experience treating kids on the ketogenic diet.

As an aside, Michelle also noted that acetaminophen suppositories are available for pain relief. Thankfully, we have not had to go there. Of course, children’s acetaminophen (Tylenol) and ibuprofen (Advil, Motrin) liquid formulas are full of carbs, so to administer a pain reliever to Nora we have crushed up the appropriate amount of an adult tablet (ask your pediatrician for the dosage based on your child’s weight before an illness strikes). It doesn’t taste good, but it can be taken with a shot of liquid or bite of cream cheese or butter. Michelle Welborn also noted that carbs can be absorbed rectally, so don’t try the children’s liquid formula as a suppository (I would not have been creative enough to consider it, but apparently someone has!)

The Charlie Foundation also maintains a list of low-carb and carb-free products, including typical over-the-counter products needed to treat an illness. Keep it handy.

Vomiting and Hospitalization

As we have mentioned before, many keto kids have high blood acid levels. It’s a common side effect of the diet. Nora runs a baseline high blood acid level now, even though she is on 2 packets of Cytra-K per day to bring it down (alternatively, the doctor refers to it as a low bicarb level). It is not at a level that makes her ill now, but if it gets lower she could get very ill from blood acidosis.

After our last visit with Dr. Wray at the keto clinic, his letter to Nora’s pediatrician gave this recommendation, which he stressed to us during the appointment as well:

If there is nausea or vomiting, she may promptly need IV fluids given her acidosis. Increasing her Cytra has not brought her bicarb up, it does not seem to be affecting her now, but certainly as we enter the viral season this may be an issue. Certainly if she is vomiting up her Cytra-K, she could fairly rapidly become excessively acidotic and may require help. If she does go to the emergency room, it is important that she not get intravenous fluids with dextrose or lactated Ringer’s as these will take her out of ketosis.

If Nora starts vomiting, our first call will be to Dr. Wray’s office to make sure he is aware of the situation and he can be in contact with the primary care doctor if necessary. Symptoms of blood acidosis are lethargy, vomitting … pretty much the stuff of the flu. So it would be difficult to impossible to tell if she is suffering from further acidosis if she gets sick. Dr. Wray is recommending to err on the side of precaution and get her extra fluids via IV if she cannot keep anything down.

If he recommends going to the ER for IV fluids, we will be sure to verify that her IV fluids do not contain glucose, dextrose, nor that they use a lactated Ringer’s solution, all of which are listed as contraindications in his last set of notes. I quickly looked up lactated Ringer’s solution and learned that it is a fluid containing dextrose and several minerals (potassium, sodium, calcium, chloride). Presumably she should have an IV solution containing minerals but without the dextrose, or with a much smaller concentration of sugar/starch. That is a question that I will put to Dr. Wray so that we know what she should get in her IV. If they have to mix a special solution, that will take time so we should know which off-the-shelf bag of fluids should be used immediately.

I was especially grateful to get these specific notes from Dr. Wray because this was also a topic of concern at the Charlie Foundation Symposium. Emergency rooms have done some real damage to keto kids because they do not have training in this special sub-set of medical issues. The technical discussion of appropriate IV solutions at the symposium was over my head, but keto teams around the world have experience in treating keto kids with an IV, so appropriate solutions are known. As the parent, you are the advocate in the room and have the final say on the treatment of your child. Usually a nurse or other tech comes in the room to administer the IV bag, so check with them before they start fluids and refuse to start the IV if the bag contains any of the contraindicated ingredients or solutions and get in contact with the doctor on-call. If you can go in with as much information and instructions as possible, you can stop mistakes before they happen.

Reminding the pediatrician and doctor on-call about these issues will start them down the right path, and getting your ketogenic diet doctor consulting as soon as possible will be critical. Writing this up still leaves me with some questions, so I have a little homework to do to continue to prepare our family for inevitable illness. In any case, there is value in knowing the where the dangers lie so that you can get the answers you need when you need them. And even better to be prepared ahead of time.

To borrow from an old bit of wisdom: Knowing is half the battle (GI Joe!)

Update: Dr. Wray responded to my unresolved questions about IV solutions: normal saline, or some dilution thereof with potassium are fine. The ER physicians will know this, and if not, can call the ketogenic diet team. He also said that he tries to avoid oral steroids, but inhaled ones and are fine if a kid has asthma or other needs. As for antibiotics, they are typically all fine (even the cephalosporins) as pills, as any break-through seizures are more due to the intercurrent illness, not the drugs to treat them.

Thanks Dr. Wray!

Cytra & Cream Gelatine Hearts

Many keto-kids need a supplement to control their blood acid levels. We’ve written about our experience with that issue before, so you can see the Blood Acid Chronicles post for details on our experience.

Nora’s supplement is called Cytra-K. It is a packet of potassium citrate crystals that is formulated with saccharine and red dye that dissolves into a sweet, carb-free drink. She now takes 2 packets a day, which would be enough Cytra for a small cup of the drink at every meal. Nora used to love drinking it, but the appeal of her sweet pink drink has worn off. As an alternative delivery method, we now make it into a jello treat that she eats three times per day. Gelatine is pure protein, so it doesn’t take away from other precious carbs and it’s easy to add cream for a sweet little keto item.

We typically mix up a batch each evening to be ready for the next day. It takes a few minutes and Nora has happily eaten 3 Cytra & Cream Hearts every day for many weeks now. I guess it’s a lesson in changing the routine when your kid gets tired of something.

I couldn’t get a decent photo of the Cytra Heart, so at least I got a happy Nora! You can see that the cream rises to the top when it sets, so it’s creamy on top and pink jello on the bottom.

Cytra & Cream Gelatine Hearts
2 packets Cytra-K
2.7 g Knox unflavored gelatine powder
1.5 T Organic Valley Heavy Cream (1/2 T in each)
3/4 cup boiling water

Place 3 silicone molds on to a flat plate or pan. You will want an even surface to transfer the filled molds into the fridge so that they don’t spill.

Weigh the gelatine powder into a glass measuring cup with a pour spout. Add the Cytra-K crystals. Pour in 3/4 cup of boiling water and stir well until the gelatine is completely dissolved. Divide equally (1/4 cup each) into the 3 molds. Measure 1/2 T of cream into each mold. Place in fridge to set, at least 1 to 2 hours.

Each serving of gelatine is 0.9 g of powder (0.9×3=2.7 g, so there is 1 serving of gelatine in each heart here), which has 1 gram of protein per serving. Therefore, each gelatine heart has 1 gram of protein and 3 grams of fat, for a 3:1 ratio, in addition to dividing up her daily dose of Cytra-K. We also add her Miralax into the mix too, still 1/2 tsp per day to ward off constipation. Thankfully, between the Miralax and plenty of fiber she has not had a problem with constipation in a long time.

Tuna Salad and Olive Tapenade

These are 2 pretty simple recipes that you can modify as you please. You probably won’t have the exact ingredients that I use, so look at the proportions and mix up your own version, adjusting the nutritional information accordingly. We don’t like mayo, so I use English Double Devon Cream. You can certainly substitute mayo and adjust the nutritional information.

Both of these recipes also do a pretty good job of hiding extra fat. You could mix in a few extra grams of coconut oil or butter to boost the ratio in your meal. Nora likes to eat both of these with a spoon!

1 serving (35 g) of Tuna Salad. Whole recipe makes 6 servings. Nutritional Analysis by www.caloriecount.com

Tuna Salad
126 g Sea Star Canned Tuna (from Newport, OR)
54 g English Double Devon Cream
16 g Greek Gods Traditional Plain Greek Yogurt
15 g extra virgin olive oil

Mix all ingredients well, weigh and serve!

The Tuna Salad recipe is for a batch of 6 servings, with the nutritional information given for a 35 g serving (6 servings per batch). But in our meal calculator we list it by the gram with breakdowns per gram, so we can use any amount of tuna salad that works with the meal.

The ratio of this tuna salad is 2.1:1. The meal will need some extra fat to balance out to higher ratios, but this ratio beats a lot of other protein options like sliced turkey or cheddar cheese. It’s a nice thing to mix as a batch and have on hand for a few days worth of lunches.

Nutrition information for 1 serving (1 batch) of Olive Tapanade. Nutritional analysis from www.caloriecount.com

Olive Tapenade
5 g extra virgin olive oil
10 g Peloponnese Pitted Kalamata Olives
10 g Napoleon Chopped Green Olives
10 g raw macadamia nuts, ground well

Chop the kalamata olives into small pieces. Combine all ingredients and mix well. Serve!

It is easy to mix up a several servings of Olive Tapenade at a time  (if you want to make 5 servings, just take all of the amounts times 5). If you put them in 1 container, then weigh out 35 g of the mixture per serving. Or as long as you have all of the ingredients out, you could mix up several batches in different containers and they are all ready to serve.

I use Peloponnese Kalamata Olives because they are a 4.5:1 ratio, the best that we can find on the shelf. One mom at the Charlie Foundation Symposium related the story of noticing a woman studiously comparing nutritional labels at the grocery store. She started a conversion and found out that the woman was starting her child on a rigorous to diet to treat epilepsy. So there you go, if you see a glassy-eyed mom studying labels at the grocery store, start up a conversation! The Napolean Chopped Green Olives come in a can and are a 3:1 ratio. With the added olive oil and macadamia nuts, the recipe is a 7.9:1 ratio! Pair it with lower-ratio ingredients for a meal.

The Keto Cookbook inspired me to make Olive Tapanade (big surprise!) There is also a flax cracker recipe that accompanies the original recipe which is good, but it’s very time intensive to make. I realized that I could use Flackers instead and made up my own version of the Olive Tapanade. Although I pair it with Flackers, Nora usually eats her Olive Tapanade with a spoon! Scrape the bowl clean with a rubber spatula–it’s good to the last gram.

 

Halloween Treats

Halloween is scary, but not because of the zombies at the door. The sugar-soaked holiday is a field of ketosis-killing landmines for a keto kid. And even if you can avoid the sugar, you might be in for some emotional bombshells.

We used some of the suggestions posted by Dawn and Tiffany at www.ketocook.com for Halloween alternatives. But I’m also thankful to Nora for being so mature about sticking to her diet and enjoying her alternatives.

As part of her dinner, I made her the gelatine skeleton posted by Dawn. She loved it! It was a ton of fat and a good amount of protein, so it also made dinner a little easier that night. I gave it to her with the pieces all piled into a container, so she had to construct the skeleton herself. Notice the LONG LEGS! She lives with a tall papa, so this must have seemed pretty normal to her! She had already eaten the skull at this point and was pretty pleased with herself.

We went to the library’s Halloween party, where they have games and prizes. Every game has the option of taking a toy prize or a treat prize (which was a baggie of Cheerios and such), and Nora always picked the toy.

But later she turned into a trick-or-treating maniac. At first, she told people, “I can’t eat candy.” The poor homeowners would look at me as if saying, “why are you taking your child trick-or-treating? What should I do?” I just said that she has allergies and we would sort it out at home. But after a few doors she would grab into the bowls as much as possible (a little embarrassing). She filled her bucket with candy like everyone else, but I was impressed that several people on our block were giving out stickers, pencils, and other trinkets in addition to candy.

The “real” Viking Thor, and the Moon Princess (from Zen Ghosts, by John Muth).

Earlier in the week I bought the candy-equivalent of a toy for Nora and for Anders. I had a chat with Anders about happily trading in his candy for his toy, so that Nora would do the same thing (although he was still out trick-or-treating more when Nora did her trade). When we got home, I put the toy under a blanket on the rug. Then we made a pile of her candy next to it. I did a magic spell asking the Halloween Fairy to take away the candy and bring a toy–then quick switched the blankets! A present appeared! The candy disappeared! She was happy with her Hello Kitty pool party set. No problem! Anders also traded in his candy for a toy and he was very happy with his surprise, but he will get to keep a bit of candy to eat on the sly. Most of the candy went to a dentist in town who was trading 1 pound of candy for $2. The kids made $4 on their haul and got a new toothbrush to boot.

For the trick-or-treaters at our door, we put together grab bags full of trinkets. I also bought 1 bag of candy for big kids (our of fear of being egged later if they got a pencil)! After Nora and I got home, her candy went into a basket that she used to give candy to the trick-or-treaters. No fuss about that either. What a champ.

And now that fall is here, I highly recommend the Pumpkin Bars from ketocook. They are fabulous. I added a bit more fat to get a 3.5:1 ratio for Nora and they turned out great. She has been eating them for breakfast!