Wednesday, September 11, 2013

Allergies schmallergies

So much has changed since I last wrote an update about Ellie’s health. It’s absolutely amazing how dynamic the immune system is. I think a lot of people believe that if a child has an allergy, that allergy will be there for life. Or there are people who ask whether Ellie will grow out of her allergies. And my belief is that neither of those things are true. Food allergies are a living, breathing thing just like any illness. We can help heal them, or we can be complacent and live with them. Thankfully, our latest strategy has made huge strides in healing Ellie’s allergies.

First of all, we have made a ton of changes to Ellie’s treatment protocol.
  • In May we doubled Ellie’s Ketotifen dose and we also switched from using Ketotifen tablets which we were getting from Canada to capsules of powder that we are able to get from a local compounding pharmacy. The Canadian tablets contained a tiny amount of lactose, and the new Ketotifen does not have any fillers, so I believe that change alone made a big difference. Ellie can’t do dairy, and a tiny amount of lactose twice a day builds up over time.
  • In June we switched Ellie’s probiotic, on the theory that perhaps her gut was overpopulated with too few strains of good bacteria. 
  • We also started an herbal protocol intended to support her immune system. 
  • We added some other supplements to support her gut health and her immune system, including l-glutamine and bovine colostrum and I re-committed to actually giving her her fish oil and Vitamin D every day.
Somewhere in the mix of all of those changes, magic happened. Ellie is now eating most foods she’s had positive allergy tests for. She has had positive skin prick results for carrot, celery, parsley, bananas, walnuts, spinach and she is eating them all with no mention of tummy aches. No rash ... no nothing. Remember cinnamon? Yep, she’s eating cinnamon with no problem at all. That one really floored me.

Friday, August 2, 2013

Worth the wait

There were so many days during our journey with Ellie's allergies and health that I shed tears over the worry that we'd never be able to have another child. I felt that she needed so much from us that there was no room to nurture another child (many days there wasn't even enough room to nurture the parents!). I worried about conceiving a child who would share her perplexing health issues and that that would simply be too much. And I worried about having a child who had even more severe issues than her, or different issues, and the idea of navigating a different realm of this brave new world of expanding chronic childhood disorders would be impossible. And, like any mother, I wondered how I could possibly love another little person as much as I loved Ellie.

Tuesday, June 4, 2013

Finding our way home

We have returned to Portland. Initially the plan was to make a four-month trip up here for the summer and to have our second baby surrounded by our network of family and friends. But this spring it became more and more obvious that LA was not a good fit for Ellie and probably never would be. I never imagined a three-year-old could be so vocal about her needs and opinions, but ours is, and just as we have been doing since her first day on Earth, we listened.

Ellie would say things like, “this is not my country. Portland is my country.” And, “California is too crazy. I don’t want to live in California.” Every day.

So when a promotion came up in Ian’s company, which would require being in the Portland office, he jumped at it and he got it. Suddenly our trip became a move and I, at eight months pregnant, packed us up and off we went.

But as with any story there are a hundred ways to tell it, and another version of the story is that we returned to Portland for Ellie’s health.

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.

Thursday, January 17, 2013

A new home, a new baby

I haven't posted to the blog in a really long time and I feel terrible that I haven't even checked the comments in months! I just assume there's probably nobody out there reading about our quirky journey with food allergies and diet, but then I checked in and I had four amazing comments from people out there who are fighting the good fight, trying to find answers for their children. I am always in awe of people on this journey, and somehow much more readily able to see the awesomeness of their work than the awesomeness of mine. But we are all in this together, healing our children and hopefully staying sane in the process :)

I find it funny that my last post was on September 10 and in it I was musing about what the next chapter held for me, whether I was being called to write about our story or whether I should have another child. This is so funny to me because six days later we conceived our second child, who we just found out yesterday is going to be a boy. I am beyond excited. I have wanted this little sibling for Ellie for a long time, probably even before I had her, and yet it felt wrong to bring another child into the family because of how much she needed from us.