I haven’t written in a long time, which is due to a wide variety of factors, including the fact that Ellie’s given up her nap, which means I’ve lost my regular writing time. But the biggest reason is that I really cannot believe what’s happening. I keep pinching myself. I’ve been taking my glasses off, wiping them, putting them back on and squinting at this situation – trying to tell if I’m seeing it clearly.
It was less than two months ago that I was sitting in a doctor’s office with a cranky Ellie in my lap, enduring an intake interview with Ellie’s third gastroenterologist.
“How often would you say she has abdominal pain?” the GI asked me.
“All the time,” I answered. “Every day. All day. All night. She tells me she has tummy aches all the time.”
Shortly after that appointment our first shipment of the Canadian drug Ketotifen arrived at our house. We had to get a prescription through Ellie’s allergist (who recommended the drug for situations where salicylate intolerance or Oral Allergy Syndrome are suspected) and ordered it through canadadrugs.com. Best money we ever spent.
We started giving it to her right away – one tablet with breakfast and one with dinner. We gave it to her for about a week or maybe more without making any changes to her diet. Then we gradually introduced questionable foods and then progressed to trying foods she had actually had positive allergy tests to. It’s been a LOT of trial and error and Ketotifen isn’t a cure-all, but it has made a tremendous difference in our lives. It seems that the protection it provides is growing over time and sometimes something that doesn’t work one day works a couple weeks later. Here are some experiences we’ve had:
- The first thing we tried was an accident. We were at a fairly fancy restaurant and Ellie was excited about these tiny little bowls of sea salt on the table. But by the end of the meal she had a tummy ache and was developing a rash around her mouth. Ian and I were panicking and couldn’t figure out what had gone wrong. Then Ian overheard the waiter telling the table next to us that this special sea salt mix he created contained cinnamon. We gave Ellie an extra Ketotifen and the reaction completely went away, including the rash.
- The other big “fail” was when we were searching for food Ellie could eat at a farmer’s market. I let her try a sample of some grilled salmon without asking about the ingredients, and after it was in her mouth the guy told me it had been marinated in lemon and orange. That night she vomited big time. It was really sad.
- Just the other day I got bold and added spinach (Ellie’s allergic) to a green smoothie and she almost instantly had a terrible tummy ache. Again, I gave her an extra Ketotifen and she recovered in minutes.
- Beyond those three memorable bad moments, Ellie has essentially not had a tummy ache in weeks. Like I can’t even really remember what it was like for her to be having stomach aches all the time. She sleeps through the night - all night, every night - where before the Ketotifen she would wake with a tummy ache and need to be held almost every night.
- She is still protective of herself and won’t eat foods that are questionable to her. I made a rice pasta recently with chicken and mixed veggies (including peppers, which were new) and she wouldn’t touch any of it. Note to self: Ellie’s not ready for peppers.
- The first time we trialed bananas she had a tummy ache and developed sores around her mouth (symptoms of Oral Allergy Syndrome). We took a step back and tried cooked bananas per her allergist’s advice (cooking a food denatures the proteins that activate Oral Allergy Syndrome reactions) and they were fine. Since then we’ve re-re-introduced raw bananas and they’ve been fine.
- We have been able to expand her diet exponentially. I think before Ketofien she was on a list of about 28 foods. There’s no list anymore. We’ve successfully added foods as varied as mangoes, broccoli, bananas, kale, rice, buckwheat, sunflower seed butter, tomatoes, potatoes, coconut milk, strawberries, raspberries, blueberries and the list goes on and on and on. Goat cheese! That’s right – I said goat cheese, people.
- As a result of this massive expansion Ellie’s eaten her first cookie, had her first muffin and mowed her way through more than one basket of In-n-Out French fries.
There are quite a few of her allergic foods that we haven’t bothered to try because we’re just too busy enjoying how great things are going. So I can’t report that Ketotifen has made it possible for Ellie to eat all the foods she’s allergic to. We’ve got lots of foods still on the “to try” list, including all spices, eggs, celery, parsley etc.
And there are other foods that I don’t envision us ever eating again. I will never feed my family gluten again. I’ll also never feed my family cane sugar. I imagine Ellie and I will probably have to stay egg-free longterm. I no longer really view soy as food. And I can live without dairy (though the occasional snack of goat cheese has been nice!). We’re no longer grain-free and I’m really excited about that development and hope we can all maintain our health on the much more liberal gluten-free path, rather than the grain-free path.
Of course life with a kiddo with complex issues like this is never very black and white, and I wanted to share that right about the same time we started Ketotifen I read a book about Irritable Bowel Syndrome (IBS). The book advocated the use of lots of soluble fiber in the diet to alleviate IBS symptoms. Sources of soluble fiber include all grains, starchy vegetables and some fruits. (The book advocates eating wheat, which I find mind-blowing considering there’s such a strong connection between gluten intolerance and IBS, but I left that piece of advice aside.) Since things were going so poorly I figured we had nothing to loose and started feeding Ellie rice.
Adding grains to her diet made a tremendous positive impact. As I’ve said before, I’m reluctant to go into poop details but let’s just say the addition of grains helped a ton in that department. Anyone with IBS symptoms can probably figure out what I’m talking about. I was shocked that not only did adding grains not cause any problems, but that it actually seemed to be helping. Since then we’ve added buckwheat flour and gluten-free oats and they’ve been a really great addition. I guess Ellie’s body was just done with the grain-free diet and ready to move on.
I’m pretty sure there’s no way I could put into words how happy I am right now. I think if I could totally convince myself that this was really happening, that we had really made it, that we were out of the woods I would just burst into tears of joy. But that moment hasn’t happened yet. I’m still holding my breath, I guess.
It’s also hard to put into words how happy Ellie is. She’s only two (nearly three!) and it’s been hard for me to perceive how much she understood about this situation. But she definitely knows things have changed. She gets so excited when we bake cookies or have pancakes for breakfast. “YAY! PANCAKES! I LOVE PANCAKES!” She knows that she ate strawberries last summer, hasn’t been able to since, and is now eating them again. The simple joy of a toddler eating a fresh strawberry is incredible. She’s not just excited about food, though. She’s just happier. She has more energy. She’s more engaged in her play. She’s growing like crazy. Between the beginning of May and the beginning of June she gained 1.5 pounds!
I could go on, but I think you get it. Things are really good. My baby is healthy. It took 3 years, but here we are.