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!

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About Christy Anderson Brekken

In no particular order... Instructor and Researcher, Department of Applied Economics, Oregon State University. Educational background: University of MN Law School, 2005. MS in Ag and Resource Economics, Oregon State University, 2011. Teaches: Agricultural Law, Environmental Law. Mother: brilliant 9 year old boy; brilliant 6 year old girl with benign myoclonic epilepsy on a modified ketogenic diet therapy. Married to: Ted Brekken, OSU Department of Electrical Engineering. Ride: Xtra-cycle Edgerunner with kid seat; 400-pound cargo capacity. Grew up: Devils Lake, ND. Lived in: Minneapolis/St. Paul, MN, Pohang, South Korea, Trondheim, Norway, Corvallis, OR. Interests: Cooking, knitting, eating, yoga, laughing, hiking, traveling, staying sane.

2 thoughts on “Illness Preparedness Plan

  1. What an informative post! We’re not in your situation (for now we’re still following the LGIT), but I could see how even any of the above could still affect someone like my daughter, and needless to say all keto kids out there!

    Here’s an update on our recent visit for a second opinion at a bigger research/medical center than our local hospital. We’re still waiting for a re-read on the EEG and MRI. The neurologists were very receptive and understanding of my daughter’s situation… a mid-elementary school girl, who had one witnessed grand mal, diagnosed with Temporal Lobe Epilepsy, and put on meds right away–with side effects that made her completely non-functional, including many simple partials that weren’t there before medication, and went away once the meds were tapered off. As a result, we devoted ourselves to finding out about alternatives and came across the keto diet, and the milder therapies, too (hooray for the internet!). Unfortunately, our local neurologist did not believe in dietary treatments, and we had to go elsewhere for more feedback and a second opinion.

    The neurologists recommended to take a wait-and-see approach, she’ll be getting a follow up EEG in a month or so. In case of a grand mal, she’ll go in for a 3 day EEG stay at the hospital (option that was never mentioned locally). We will continue with our version of the LGIT, with feedback from the dietician, who’s in the process of becoming familiar with the diet, and receiving info from Mass General (Low Glycemic Index Therapy research center). Fortunately, our dietician attended the Charlie’s Foundation Conference in September; I’m sure the training and exposure have been invaluable to her work. All in all, doctors and dietician are all working in unison. They took our input very seriously, knowing that my daughter is currently functioning quite well and hasn’t had another convulsion. They were very receptive to the patient, and her parents’ concerns!

    Christy, I just wanted to thank you (and your husband) once again, for your efforts on this website. Reading about the Charlie’s Foundation Conference on your blog, getting many ideas for low-carb snacks and meals for my daughter, and knowing that we’re not alone on the challenging epilepsy road, have all given me a more positive outlook about the future. We’re grateful that my daughter has been stable to continue life as a “normal little girl,” as much as possible.

    On a side note, I tried your Pulgogi recipe and it was very good (I’d given up on Korean food due to the high sugar content on many dishes). I will be baking the pumpkin muffins for Thanksgiving, and cooking alternatives to mashed potatoes and cranberry sauce. Happy Thanksgiving!
    Nat

    • Hi Nat! All good news–finding the right medical team is so invaluable when you are on a road like this. You are so smart to do your own research and keep looking for the doctors would will take your concerns seriously. Well done! Sending all of our good thoughts that your daughter will continue to do well on LGIT. Thanks for keeping us updated. It helps to hear other stories beyond ours too, I guess that’s how we got into this blogging gig–because other parents stories have been so important in helping us feel like we are not alone too.

      I am also calculating Nora’s Thanksgiving meal for tomorrow. I’ll post our meals and pictures! I’m not ahead-of-the-game enough to have tested and pre-prepared recipes. I’m working from Dawn’s suggestions at ketocook for cranberry sauce, mashed celeriac (which I have used before too) and stuffing. I’ve also made one of Nora’s Perfect Keto Cheesecakes for dessert. Mmmmm.

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