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

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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 CanadaDrugs.com 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.

Fresh food allergy testing, going off allergy meds

Last week I took Ellie in to her allergist's office to do fresh food allergy testing. The way this works is a lot like traditional skin prick allergy testing. First the nurse used the food extracts, taking plastic pins that had been submerged in food extracts and then poking them into Ellie's back. With the extracts, Ellie had positive results for parsley and spinach. Because the results were so clear, we did not follow up with the fresh foods for parsley and spinach.

Next, came the fresh food testing. I had brought in a bunch of foods that I suspected for causing problems for Ellie. I focused on foods that cross-react with birch tree pollen since we've been suspecting Oral Allergy Syndrome, but I also threw in random foods my mama instincts told me were suspicious. It was actually very cute because Ellie was not keen on doing a second round of "pokes" but the nurse encouraged Ellie to poke the pins into the fruits and vegetables which really helped settle her down. With the fresh food testing Ellie tested positive for celery, carrots, lemon, grapefruit.

Making the decision to use allergy medicine

Man we have been through the wringer lately. Ellie has been very ill - up every night for hours on end with tummy aches that we can't seem to fix. We have been keeping her on a very conservative diet and yet she keeps reacting to things that used to be fine. Over the weekend I did more research online about Oral Allergy Syndrome - which her allergist suggested as a possibility on Friday - and I've become convinced that this is an issue for Ellie.

So we were faced with the decision of trying to eliminate all foods from Ellie's diet which can cross-react with environmental allergens like birch tree pollen. This would have included foods like carrots, apples, cucumbers, zucchinis and almonds, which are all critical in her extremely restricted diet. The other option was to try Singulair. Every bone in my body resisted the idea of taking one more food out of Ellie's diet so, yesterday, after a hellish night, I decided to take a leap of faith and try the Singulair. She had a better night last night (up four times, but much much better than hours of screaming). I am feeling very cautiously optimistic.