Tuesday, May 1, 2012

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...

13 comments:

  1. Wow, this is really something. I came across the salycilate sensitivity about 1.5 years ago and didn't think much of it. But now, knowing all the foods that J reacts to, I think there may be a possibility that she is sensitive to salycites. She dipped her finger in my honey the other day and licked it. This was her first honey in her life - she got a rash on her arms. Weird. Anyway, interesting that you're mentioning Ketotifen. I hope it really works for you. I was just talking to our ND about trying quercetin derived from onions (http://www.immunesupport.com/92fal004.htm). I am half scared, half excited that it might work. Also, I came across an interesting web site that has loads of information on these kind of sensitivities: http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/. Maybe you've already seen it. Please let us know how it goes! Jana

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    1. Hi Jana - Yes, I am familiar with the Failsafe diet! That was a good resource when we were first eliminating salicylates. We recently tried quercetin (wrote about it a couple of posts back) and Ellie had a very strong (bad) reaction to it and I came to find out that most quercetin is sourced from high salicylate foods like parsley and citrus. If you're suspicious about salicylates I'd just double-check that it's only from onions. And, yes, honey was a huge problem for Ellie. Will keep y'all posted on how the ketotifen goes!

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  2. My heart breaks for you that there are still so many walls to overcome with Ellie's health. I know that frustration well and nobody deserves to be in that situation, especially our sweet innocent babies. Katie is finally tummyache free the last couple of months, and I am so grateful that we have found a patch until she's fully healed. In our case, enzymes are the key at this point. We're all using Enzymedica Digest Spectrum at least some of the time. I really hope this is the key to helping Ellie move further along her health journey. How are you doing? Do you feel like you've resolved your health issues?

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    1. Hi Jennifer - We have been using Enzymedica's Digest Gold for about 9 months now - I think - and that did make a huge difference. Ellie had a really good spell after introducing enzymes and bile salts. So glad you've found that helpful too!

      I am doing OK, thanks for asking! I find that I can manage my Hashimoto's and adrenal fatigue symptoms quite well with a very low-glycemic Paleo diet. Sticking to that diet is the challenge! But I do pretty well :) I actually just did a cleanse, which was a wonderful experience for me. Maybe I'll write about that next.

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    2. It must have been in my subconscious about Enzymedica from one of your posts. I was surprised that I was interested in trying something that I randomly found on the shelf at Whole Foods. Now I know why. Thanks for wedging it there among all of the nutritional clutter that my brain has become overrun with. ;)

      Definitely write about the cleanse and give us an update! I'm glad you've found a lot of answers through all the struggles and questions and effort that this process takes.

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    3. Ha! Glad I planted something helpful in your subconscious. That's what this is all about - sharing what works and what doesn't - mama to mama.

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  3. What a journey you have been on! Good for you making the leap. It was hard and scarey for us when we had to start adding in traditional medicines in addition to GAPS protocols for my toddler. And you are right that sometimes more is needed than food...Dr. Natasha says that 80% of GAPS patients are cured by diet alone, but 20% need additional assistance. Sometimes these additions are required, and do not disprove GAPS. Unfortunately though the healing process can take years, which is extremely hard when dealing with a child. Are you aware that fruit and natural sugars can be quite damaging? As well as moving quickly through the intro? My daughter is one of those. We are finishing up 15 months on a restricted GAPS and are examining what is keeping her from detoxing and healing properly. Those hiccups can be hard to find. We have moved much slower with our Ellie out of necessity. I see in your early posts you introduced raw egg almost right away. After 15 months that would cause bloody stool for us. 2-4 years on the diet is the average, and I think that is not very well known since Dr. NCM recommends moving as quick as possible through intro. 'As possible' depends on the person or child for certain. There is a time and a place for what a GAPS friend of mine calls the Cherries on Top, which is appropriately used allopathic medicine. You can find lots of information on that through WAPF - I am not sure how you came to believe that WAPF is anti-medicine, though I am sure there are some extremists out there. And oxylates or salicylates can certainly cause issue. Biden's son has an oxylate sensitivity. If you are unable to continue the restrictions of GAPS with your daughter or choose other methods I pray that you find exactly what she needs to help her heal and move forward. Here is a resource I recently found that may be of interest to you. They provide resources on BioMed, NAET, and BioSET. These doctors are generally trained in GAPS healing protocols as well as functional and traditional medicine. In toxic children these additions are often needed. We are trying some for my Ellie. Best wishes as you trudge forward on a heart breaking journey to heal your daughter. And may you hang on to hope that healing is in her future regardless of where the journey takes you. http://www.epidemicanswers.org/get-help/solutions/healing-approaches/

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    1. Hi Nichole - I realize it may be confusing since my blog is called BabyGAPS, but I no longer subscribe to GAPS as our protocol. We work very closely with a nutritionist who has helped us develop a diet that is more tailor-made for Ellie's needs. (A diet that is constantly shifting, of course.) GAPS was too restrictive, and caused Ellie to have horrible gallbladder attack symptoms because of how high in fat it was. And the promises that she would some day be able to tolerate eggs, or dairy, or sauerkraut, or you name it - they never came true.

      I just don't buy into the concept that Ellie is toxic and just needs to go through some more detox. We've been through that phase and now I wonder if she really was detoxing, or if it's just that the foods I was feeding her were making her sick. I believe there are specific mechanisms behind her ills and I am working hard to figure out what those are. I believe salicylate intolerance and fructose malabsorption may be the keys I've been looking for. We'll see.

      I think it's great that GAPS has helped so many people, it just wasn't the right answer for my kiddo.

      We did try NAET therapy for Ellie back even before we started SCD/GAPS and that treatment got us nowhere. It was a highly entertaining experience, though!

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  4. Annie, I forgot to mention that we are also going to try ne enzymes - Houston Enzymes No-Fenol. Have you tried those?

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    1. Hi Jana - We haven't used that brand. We use Enzymedia's Digest Gold and have had a lot of success with those.

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  5. Annie, thanks for sharing the experience with querceting, somehow I missed it on your blog, I will have to check that out. I am going to try the No-Fenol with J first. It helps digest fenols (which can give you all kinds of symptoms, including red face and ears). From what I understand, salycilates are also part of the fenol family... We've also been using Enzymedica and it helped, just not all the way...

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    1. Hi Jana - I talked about quercetin in my (very long) post about salicylates: http://babygaps.blogspot.com/2012/04/when-grain-free-diet-isnt-working-look.html#more

      Interesting about the No-Fenol - I'd love to hear how that goes! Yes, fenols and salicylates are both eliminated in the Feingold diet, which I'm not super familiar with. It's so interesting how so many trouble-making foods show up on so many different lists.

      Good luck to you, mama!

      ~Annie

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  6. Hi this one is great and is really a good post. I think it will help me a lot in the related stuff and is very much useful for me. Very well written I appreciate & must say good job..Enzymedica Digest Spectrum

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