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.