Friday, February 1, 2013

What two months without Ketotifen taught us (all over again)

So, here’s what happened. In my nauseous, pregnant daze in November, I did not order Ellie’s Ketotifen refill in time. By the time I did call to place the order, I realized it wouldn’t arrive before we were set to leave for our holiday travels. So I had the medication shipped to my parents’ house, in the hopes that it would arrive in the window we were in the Pacific Northwest, and not later, after we had moved on to visit family in Colorado. All told, we were without Ellie’s Keotifen for about three weeks in December and we were definitely feeling the pain with daily tummy aches and foods that had been working that weren’t working anymore. But we got it back, just before Christmas, and we were so relieved.

Then, we flew from Portland to Colorado and somewhere in transit we lost it. We lost $200 in medication and we could not find it to save ourselves. Ian and Ellie and I all had terrible colds and I know I was in a major fog, and all I could do was get through the next week of travel. I had no capacity for tracking down the Ketotifen (which is also called Zaditen). We had left two boxes of gifts at my parents’ for them to ship to us, and we hoped that maybe we had put the Ketotifen in there. So we spent a week in Colorado, and then spent another week at home in LA waiting for the boxes to arrive and when they did arrive – no Ketotifen. That’s when I really realized we were completely screwed. So I called and placed a new order and was told it would take the customary 14-21 days of shipping, but it could be toward the long end of that spectrum, because they had changed the country they were sourcing from.

By this point, things were really looking bad. Ellie had only had Ketotifen for one week out of about six. She was having tummy aches daily. In the morning the first thing she would say was, “Mama, I have a tummy ache.” She complained of her tummy hurting all the time and I had no idea what to do. I tried pulling back on her diet, but it had been so long (about nine months) since this magic pill entered our lives that I didn’t even really know where to start. I re-researched salicylate sensitivity, referred to this online food list daily, and seriously restricted any form of her allergic foods, even though small quantities of, say, cooked celery, had been fine in the recent past. I learned by trial and error – again. I made too many mistakes, and Ellie suffered. I hated it. I hated that we were back in that place. I think enough time had passed that I really started to wonder if that bad time had ever even happened.

In addition to tummy aches, we struggled with other symptoms. She started having lots of potty accidents. It took a long time for Ian and I to make the connection (urinary incontinence is a symptom of salicylate sensitivity) and we weren’t the most understanding parents. It seemed like she was just being stubborn and she was constantly telling us she didn't have to go pee, even if it had been hours since she'd last gone. Ellie also became really – um – unpleasant to be around. She wasn’t listening to anything we said, wasn’t cooperating, wasn’t playing independently and generally didn’t seem to care that we were fed up. I wasn’t sure if that was a three-and-a-half thing or a food thing. We signed up for a parenting class.

And then, Ellie’s Ketotifen arrived three days ago. And yesterday she didn’t have a tummy ache for even one moment. Yesterday, she played happily in the yard. Yesterday, she made it to the potty on time every time. Yesterday, I was able to brush her teeth without a prolonged argument. I think we are on the road to recovery.

So, after another brush with all of Ellie’s food sensitivities in their unmasked state, I can confidently say that Ellie’s food issues come in four categories. This I know with absolutely no doubts now.

The biggies: Our family does not eat gluten, dairy or sugar. (In our house, anyway. Ian is a healthy guy and he gets to make his own choices when he's out and about. But this is how we run our home.) I feel that avoiding those big three is critical to anyone’s health, and especially to the health of people with problems that relate back to the health of the gut, as in autoimmune disease (me) and allergies (Ellie). Our experience with Ellie’s failure to thrive, and the fact that she indeed began to thrive once we got gluten out of our diet gave me the confidence to say that’s out forever, even though we’ve never had a test tell us definitely that she is Celiac or sensitive to wheat in any way. And a recent run-in with cow cheese at a restaurant also confirmed that dairy is no friend of Ellie’s. In the past I would have put eggs on this list, but I have recently been able to add eggs back into my diet and I’m hopeful to trial them again with Ellie as soon as she’s back on track.

Salicylate foods: There is no denying it after this second bad stretch. Ellie has a big problem with salicylates. Foods like dried fruit, oranges, berries, zucchini, cucumbers, peppers, tomatoes, seaweed, almonds and peanuts are all very high in salicylates and I can say from experience that Ellie struggles with them all.

Oral Allergy Syndrome: As if our produce options weren’t restricted enough already, Ellie also has big problems with many Oral Allergy Syndrome foods, like celery, carrots, almonds, apples, parsley, apricots, grapes, bananas and cherries.

Other random allergies: Finishing up this ridiculous list are foods that Ellie is just uniquely allergic to. The biggie in this list is cinnamon. We do not mess with cinnamon, even when Ellie is totally on board with her Ketotifen. She also had a positive allergy test to walnuts about a year ago and I haven't bothered to trial those. We can live without walnuts for now.

It’s a bit early to say, but I’m hopeful we’re on this other side of this horrible experience. And I am so, so grateful to have found a solution that really works, and lets my kid be a kid. A kid without tummy aches. A kid who gets to eat cookies in her backyard sometimes. 


  1. Congratulations on making it through this trial with your sanity. Hoping for a healthy rest of the year.

    1. Thanks Mary Lou! The year can only get better from here :)