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.
The only foods she’s had positive results to that we haven’t tried are citrus and oysters just because we haven’t gotten around to it yet.
I reported this fabulous news to our nutritionist the other day and she asked what I thought this big change was attributable to - the increased Ketotifen, the change in probiotics, the herbal protocol, or the additional supplements. Of course, I have no idea. But I imagine it’s all of the above. Something has shifted and it’s wonderful.
But, as the saying goes, this ain’t my first rodeo, and I know now that the immune system ebbs and flows. I am enjoying this new freedom and the room I have to play with Ellie’s diet in such an expansive way now. But I am also trying not to rely on these new foods to heavily so I don’t overwhelm her delicate system.
Another interesting thing happened this summer that I thought was worth mentioning. At one of August’s well-baby visits Ellie just randomly started vomiting. If you have kids you probably know this scenario - your kid seems totally fine and then wham-o - barf is everywhere. August also peed on the midwife a few minutes later so it was quite the office visit.
We figured Ellie was coming down with a bug or something, but we took her home and she was totally over it. Weird. Well, a few days later the exact same thing happened. And then a few days later the exact same thing happened again. This wasn’t happening on subsequent days ... so I put my investigative mama cap on and realized Ellie had eaten cherries on each of these days. These were cherries that were given to us, and I believe they were not organic (we almost always eat organic produce). Hmmm .... I didn’t think Ellie was allergic to cherries ... that is really weird.
Well a couple weeks later Ian was reading Sunset magazine and there was an article about cooking with scallops and a side blurb about how you always want to buy dry scallops because the white scallops you normally see at the store are chock full of preservatives. How interesting. Because Ellie vomits when she eats scallops. And it’s the exact same reaction. A few hours after eating the food she vomits multiple times until her tummy is empty and then she’s totally over it.
So I started doing some internet research and found that not only do cherries and scallops have a lot of preservatives in them, they commonly contain the same preservative. So interesting! It’s a great lesson that sometimes it’s not the food that’s the problem, it’s what’s been added to the food that can cause trouble.
I am looking forward to trying organic cherries or dry scallops to test out my theory.
In the midst of all of this - this crazy, big, exciting summer - my baby girl turned four. It's hard to believe. It's been a long road and I love her more every day.
I realized after posting this and re-reading it that it sounds like Ellie is eating whatever she wants, which is not true. She is still gluten, egg and cow-dairy free. Also, she is not symptom-free. We are still seeing some symptoms related to eating high salicylate foods (like those raspberries, above!). Things aren't perfect and, really, what is, right? But things feel pretty darn fabulous after the rough year we've had.