Thoughts on the ketogenic diet – Part II

7 Sep

You can read Part I here.

* * *

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.

8 Responses to “Thoughts on the ketogenic diet – Part II”

  1. Jenny K September 8, 2008 at 3:17 am #

    From what I’ve read about the diet, the kids can get acidosis or too much ketosis. Rapid breathing, irritability, increased heart rate, fatigue and vomiting are signs of that. If that happens you give them 2 Tablespoons of orange juice, if there’s no improvement in 20 minutes you give them 2 more Tablespoons of juice. If there’s still no improvement you call your physician. All they’d do at the dr’s or ER is check how acidotic the child is and give flids through IV if needed.
    The drugs can cause cognitive delay, effect their growth and cause organ damage, so there’s bad on both sides you just have to pick which you feel is less evil.
    The drugs are expensive, if we had to pay for ours it’d be upwards of $200/month AFTER insurance. But Ohio has a program for children with medical issues called BCMH for short and they pay 100% whatever our insurance won’t (copays, deductibles etc..), they also pay for her therapy and her preschool.

  2. Malva September 8, 2008 at 6:10 am #

    I think it’s great you’re going to give this a try. It seems to me that a suboptimal diet can’t be much worse than getting pumped full of drugs providing the end result is the same. They talked about that diet recently in the newspaper I read online saying that it has the same success rate as any of the drugs so should be tried as well. It was a just a plain article in a very mainstream newspaper.
    Found the link (it’s in French): http://www.cyberpresse.ca/article/20080903/CPACTUEL/80903022/6711/CPACTUEL03

    About the speech thing, I’m not sure exactly how old Jade is but my son only finally started to talk about 4 months before his 3rd birthday. It was quite a difference from his sister who was talking in full sentences by the time she was 18 months. I wasn’t worried tho because he was communicating very well, just not using words. He’d point at this diaper when he wanted it changed. Go get a book if he wanted us to read him a story, open the fridge and point at something in it he’d want. You get the idea.

  3. Nem September 8, 2008 at 7:42 pm #

    *Hug*

  4. shannon maccuaig September 9, 2008 at 7:58 am #

    Why is everything always so complicated? Fawn, I just feel so bad for you. Poor little Jade! I do, however, think it will be great to try the diet and judge it first-hand. The positive news about your situation is that you can stop the diet if you want and fall back on the drugs if you don’t like the diet or if it doesn’t work. Your glass may be mostly empty, but at least you have options. How difficult it would be if this was your last resort and still not a guarantee! I don’t know anything about the drugs that Jade is on, but in my own experience with prescription drugs, they are bad, bad news. I took something our doctor ordered to help relieve the bad cold symptoms we have now, and it rendered me unable to walk! yes, WALK!!!
    I’m praying for you all. Lots of love…

  5. Lindsay September 9, 2008 at 10:20 am #

    I’m with Nem on this one – *Hug*.

  6. DR September 9, 2008 at 1:34 pm #

    Google Michael Eades –

    His blog is here – http://www.proteinpower.com/drmike/

    Lots of good info – science not hyperbole

    Good luck

  7. MommyTime September 9, 2008 at 4:43 pm #

    I will be very interested to know if you try this. It certainly seems interesting and worth the experiment, if you feel that she will be getting adequate nutrition this way, since it could be really beneficial. I’m so sorry you are going through all of this — though at least it’s happening now when you still have 10 more weeks till Nugget appears and needs so much attention. My biggest hope for you is that the drug/diet combination gets worked out to its most optimal by then, so that you can have the time and energy to focus on the new one too. (((hugs)))

  8. jeffsher63 September 9, 2008 at 6:08 pm #

    I just happened to stumble across your blog, and being that I’m a RN in Peds, was interested in the subject.

    Of course, starting the diet is a choice that only the parents can make, and I’m sure it’s not an easy decision. Personally, I’ve heard positive feedback from several people over the years; those who either had children on the diet, as well as nurses who took care of patients on it. And yes, this is just anecdotal.

    I’m sure you have read a lot of web pages on the diet in your research; you may want to do a search on Google Scholar as well: http://scholar.google.com/scholar?hl=en&lr=&q=ketogenic+diet+seizures

    As with everything, there are pluses and minuses. Whenever I have to make such a decision, my basis for deciding is risk vs. benefit, and whether the risks are WORTH the benefits (I’ve had my fair share of these types of decisions), but judging from your post, it looks like you already think that way.

    Best of luck; hang in there!

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