You can read Part I here.
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You might be wondering why we’re even thinking about all this when it seems Jade is doing so well on her medications. There are a few reasons.
Although I think we’ve been lucky regarding potential side effects of the drugs, lately we have found that she sleeps more. (She’s had two dose increases in the last two weeks.) She doesn’t seem drugged or sedated when she’s awake, but she sleeps longer and gets tired more easily. And we see more seizures when she’s tired. I know some parents fantasize about drugging their kids to sleep (I know I did!), but sleeping more doesn’t necessarily mean peaceful sleep. There are nights that she is up for an hour or more having repeated seizures, and then she sleeps in late. But we have to give her her medication on time; sometimes she’ll take it in her sleep, sometimes she won’t. The worst are the mornings where I have to get to work; it’s heartbreaking to force her to get dressed and go to daycare when she’s insisting that it’s “nap-time”.
Another reason I’m thinking about the diet is because of the unstudied but anecdotal evidence of kids who have leaped ahead in their development after they started the diet. Jade has an appointment tomorrow to be screened on her language and speech development; we have some concerns that she’s not as far along as she should be at her age, although I’m sure there’s a huge spectrum, so it’s hard to judge. (Perhaps it’s just that all of our friends’ toddlers are particularly precocious?) This may have nothing to do with the epilepsy, as I think she was somewhat late in starting to speak real words, though she babbled happily from early on. Being slow to develop language skills might not be a huge deal if you can catch up evenutally, but it’s still a consideration. Are there any potential lifetime effects to late speech development?
There are some financial considerations, since the drugs Jade is taking are pretty pricey. Fortunately, this isn’t the main concern, partly because we’re fortunate enough to have health insurance through my work, and also because the Yukon has a fantastic program for people who have chronic illnesses like epilepsy. The government covers the cost of drugs or equipment necessary for treating the illness after the first $250 in a fiscal year. All I can say about that is wow! That’s just more evidence of the fantastic medical care we get here. (Now, if only they’d start paying for midwifery services…)
There are drawbacks to consider, too. There’s a higher chance that Jade could develop kidney stones on the diet: 1 out of 20 kids on the diet get them, versus 1 in several thousand for the general population, but they’re more likely to develop in kids who have other metabolic problems.
Breakthrough seizures are more likely to happen if she gets sick (we already see more seizures when she’s catches a cold now). Since she goes to daycare, how likely is it that she’s not going to get sick? Or is taking her out of daycare altogether going to be necessary? Another scary aspect of illness in “keto kids” is that they tend to have “sour blood”, also known as acidosis, which can cause the child to get even sicker, requiring treatment in hospital.
The diet doesn’t work for everyone. The usual statistics I hear are that diet completely eliminates seizures in about a third of kids, reduces seizures for another third, and has no effect on the last third. Families who don’t see improvements in the first few weeks tend not to see them at all and end up dropping the diet.
Then there are questions about how the diet affects growth, bone density, cholesterol… Epilepsy.com has a good article on the potential side effects of the ketogenic diet here. The good news is that a many of the side effects can be addressed. But then if more drugs are needed, doesn’t that kind of defeat the purpose of trying the diet in the first place?
The big question is, for Jade, would the benefits outweigh the costs? Also, what would be the downside, besides time and energy (which, goodness knows, is certainly a price to pay) of trying it and dropping it if it doesn’t work?
Anyway, today’s probably not the best day to be ruminating on this, but most of this post was already written. It’s been a particularly rough day. From the time we got out of bed, Jade started crying about an “owie dere” in her mouth. I was sure that one or more of her last four molars were (finally!) coming in. She ate less all day today than she usually eats at each meal, and spent a lot of the day in our arms, either crying or dopey. At bedtime today Michael managed to actually look into her mouth and discovered she has sores on her upper palate. The neurologist on call in BC thinks it’s likely a virus and probably isn’t drug-related, but it’s unsettling. These days it’s so hard to know what’s caused by the epilepsy and what comes from other factors.