Putting our hopes in Ketotifen

Back when we started our SCD/GAPS adventure I really believed food could fix everything. I believed that if we took the right foods out and put the right foods in that we were guaranteed success. I was wrong.

A lot of people behind GAPS, the Weston A. Price approach, the raw food movement - whatever! - push the idea that food truly can heal all that ails you. And that's just not true for everyone. Believe me, I've tried.

There is something about Ellie's system that causes it to react to whatever she's eating. So we trial dairy and it seems fine, and then one day dairy's no good anymore. Ditto for grains, or soy, or whatever. Finally we got her on a very, very clean diet comprised primarily of meat, vegetables and limited fruit and what happened? She started reacting to fruits and vegetables. The explanation in GAPS is that in a situation like this we need to heal Ellie's gut with bone broths and fermented foods and a high-fat diet. Well, we tried that and we landed here anyway.

I am 99.9% sure Ellie has a sensitivity to salicylates, a theory first proposed by her mainstream allergist. We did a salicylate elimination diet last month, which produced huge improvements for her, and now I am tinkering with bringing some high salicylate foods back into her diet and every time it's a mess. She reacts with symptoms like: bright red cheeks, tummy aches, sudden urges to go pee but then unable to actually pee, wetting her pants, acting hyper and generally fussy. Yesterday I went back to strict salicylate elimination and our day was a dream - she played independently, had no trouble with the potty and was so warm and fun and affectionate.

Back when I thought food could fix everything I really shunned mainstream medicine. I felt I had been really betrayed by the doctors who were looking after Ellie in the first year and a half of her life (before we switched insurance and I made a big change to her medical care). I felt like I had "tried that" and found Western medicine to be so terribly lacking that it wasn't even worth using anymore.

That's all fine and well and some people can get all the treatment they need using naturopathic care and homeopathic medicine, but when things aren't working sometimes you have to take a leap.

I simply refuse to live in a world where my daughter cannot eat healthy foods like celery, carrots, parsley, lemons or almonds. I'm not willing to wait any longer while I have to deprive my child of produce. It's produce, for God's sake! It's not Twinkies and Sour Patch Kids!

So we made the decision to trial a drug called Ketotifen. In the form used for gastrointestinal allergic reactions, Ketotifen is not sold in the United States - we had to order it from CanadaDrugs.com, which I find hilarious.

What is Ketotifen? It's an anti-histamine and a mast cell stabilizer. I'm not an expert on the science, but I believe Ketotifen works to stop immediate allergic reactions via the anti-histamine but also supports the body stabilize an out-of-whack immune response by helping cells not to release so much damn histamine in the first place. Interestingly, Ketotifen is also reported to help generally with IBS symptoms, which could be an added bonus.

From the research I've done it looks like there have been at least two studies on the use of Ketotifen to treat GI-based allergic reactions and the results seem promising. This study used Ketotifen in people who had gut-based symptoms when consuming certain foods, and 66% of the study participants had no symptoms when consuming the allergic food after using Ketotifen. This study used exclusively pediatric participants, and found that after a trial period of Ketotifen 10 out of the 17 kids had zero reaction to their food allergens. Amazing!!!

I also found this thread, with a lot of testimonials from people with salicylate sensitivity who have found partial or total relief using Ketotifen.

Ian and I thought a lot about whether to give Ellie a pharmaceutical. We recently tried Singulair and it did not go well. It sounds like the potential side effects of Ketotifen primarily include fatigue and weigh gain, which are just not very scary side effect for a very busy and quite trim toddler. :) We decided the potential pros far outweigh the potential cons. 

I am really, really excited about the possibilities here. I'm trying not to get too worked up (remembering that 7 out of those 17 kids still did react to their trigger foods). But this is very promising stuff. The Ketotifen is en route to our house and my hope is that it will unlock the door to an expanded diet for Ellie.

Of course with Ellie nothing is ever this cut and dried. I have tried feeding Ellie some pear, which is like THE one fruit you can have on salicylate elimination and the pear made her very sick. Which brings me back to the theory of fructose malabsorption. So my current theory is that Ellie has two main challenges: salicylate intolerance and fructose malabsorption. (There's a great post about fructose malabsorption on The Primal Parent if you've never heard of this condition.) We go in to see a new Gastroenterologist tomorrow, who is supposed to be a whiz in diagnosing fructose malabsorption.

My great hope is that we're on the verge of figuring this all out. I still hold out hope for a day that Ellie doesn't have a tummy ache. One step at a time...