Traveling with keto and epilepsy

Because we are a bi-national family we have family and friends literally all over the world, and regular air travel is a fact of life for us, even though traveling with any small child between the ages of 8 months and 2.5 years should be considered torture under the Geneva Conventions. M has been on two international trips since his first seizure, but that was in the halcyon days of thinking that first seizure was a one-off febrile scare; we had his rescue medication Diastat at that point because that first seizure was so long, but other than making sure that stayed relatively temperature controlled and easily accessible throughout both trips, we didn't think much of it.

Things are different now, especially on the keto diet where we can't rely on sourcing food on the go. It's felt intimidating but I knew we needed to get over the mental hump. Once we got through the worst of the cold and flu season and felt like we were getting into a decent routine on keto, I finally bit the bullet and bought plane tickets to take the kids to see my parents on the other side of the country.

And honestly, it was not as bad as I had expected. I can't help but project manage so I did a ton of preparation beforehand, thinking through different scenarios and having plans for all of them, but it made me feel more comfortable and made things smooth. The fact that we got through 14 hours of plane travel and a week away from home without any medical incidents was just a bonus.

Some tips and tricks I found useful:

Planning for medical care: Of course I hoped nothing would happen while we were gone, but as they say, plan for the worst and hope for the best. I found the closest ER to my parents' place and verified it was covered by our insurance. I also found the nearest compounding pharmacist that could handle keto-friendly compounds if we needed them - there were actually three nearby, but I had my mother visit each of them in advance to see if they knew what we needed. The compounding pharmacist at the first one she visited looked at her like she was crazy, but the second not only knew what to do, she was even familiar with Dravet Syndrome. We luckily didn't end up needing her services, but I'm glad we had her lined up since I didn't want to be frantically googling and calling around if M urgently needed ibuprofen or an antibiotic while were gone.

Bring documentation: we have two medical care plans for M that we carry in his diaper bag and have available at home near the entrance the EMTs use when they come - one is a general "Dravet syndrome seizure response plan" that includes information about the sodium channel blocking anti-seizure drugs that are contraindicated with Dravet, and the other has details on what implications the ketogenic diet has for emergency care - for example, his blood sugar will always appear low, so they should only treat it if he's symptomatic, and IV fluids can't contain dextrose. I brought our laminated copies just in case. Since we had our neurologist prepare these and put her contact information on them, I figured they could also serve as backup documentation for the TSA if they questioned the liquids M needed that I was bringing on board - though they never even asked.

Bring medication: we had his Diastat and daily Keppra as well as acetaminophen suppositories. If we were traveling more in the thick of cold and flu season I would have brought a bunch of extra Diastat, would have pre-emptively filled one of our componded ibuprofen prescriptions, and probably also his clomazepam that we give him as a bridge when he's sick.

Bring food: we make up his keto shake - a 2:1 ratio mixture of heavy cream and whole milk - in a 1L water bottle every morning to use throughout the day, so I made up a fresh liter to bring on board the airplane with us to get him through the day. I also had a bunch of snacks - a few of his all-in-one baked goods like cookies and zucchini bread, as well as measured out portions of blackberries and pork rinds. To make sure he'd get the fat he needed with those I had a couple of capped 10mL syringes of avocado oil and heavy cream in my bag to give him with the snacks. I also had a few of his pre-made meals I pulled out of the freezer to have ready when we got to my parents' place so I wouldn't have to be measuring and prepping after a long day of travel.

Pack it all: I got this Coleman cooler backpack and threw in all of his food and keto shake with an ice pack. I also put his Keppra in there since the compound is supposed to be refrigerated. It kept everything cool enough throughout the day and was lightweight to carry. Also, since I don't think I've mentioned it before, we always carry two doses of Diastat and his Auvi-Q (the epi-pen type things for his nut allergies) in one of these emergency med cases.

Tell the TSA: I've flown with milk, water, medicines, etc for both kids without any problem from the TSA, and the same was true of this trip - as we put our bags on the belt for the x-ray I just let the TSA officers know I had a bag full of medically necessary fluids that required extra screening. They didn't ask for documentation on either side of the trip; just did their extra scans and sent us on our way with only a few minutes of extra delay. I do always plan to have the documentation just in case, though, especially as he gets older and the "he's a baby, he needs this milk and water" becomes a less easy conversation. I've also heard of people traveling with the prescriptions for medications like Diastat - and if I had Epidiolex, the CBD-derived drug, I probably would do this for sure - but I've never had anyone in the US give me trouble about a prescription. Traveling overseas I would definitely have the prescriptions with me, though.

Go shopping: Amazon is a giant monopolistic problem that we should wean ourselves from and also I don't know what I'd do if not for Amazon Prime and, particularly, the Prime Now delivery from Whole Foods. I set up a delivery of heavy cream, coconut flour, avocado oil, and a bunch of other foods we keep on hand for M to be delivered to my parents' place the day before we arrived so I wouldn't have to give my mother a long list of specific brands to look for, or go shopping myself when all I wanted to do was rest.

Enlist help: I asked my mother to roast some spaghetti squash ahead of time to make prepping some spaghetti bolognese easier and faster when we arrived, as well as to cook some chicken thighs for a butternut squash meal he likes too. It was awesome to have those parts of meal prep done so I could focus on the measuring.

The upshot is that with all this prep, and the stroke of luck that he wasn't ill or seizing at all during the trip, things went better than I expected. That's not to say I'll sign up to manage two little kids on an airplane for hours any time again soon, but it sure could have been worse. And now that we're over this mental hump, we look forward to getting back to our traveling ways in the future!