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.

The magic of raw foods

Sometime last week we took another bold step and introduced raw vegetables, including the nightshades tomatoes and peppers. It all started with a bad night, which we were suspicious was caused by sauteed red bell peppers. I consulted with our nutrition counselor and she suggested trying dinner the next night with only greens as the vegetables. Ian didn't totally get that message - and was in charge of dinner that night - and made a huge salad with the butter lettuce I bought, but also included cucumbers and tomatoes. I cringed and went along with it.

And Ellie did amazing that night! So amazing that we've had a huge salad at dinner every night since then and she's been doing fantastic. We have previously suspected Ellie was sensitive to nightshades, which I can now confidently say can be ruled out because she is absolutely thriving on tomatoes and peppers.

Moving pieces of the puzzle around

After two horrible nights, we had to go back to the drawing board this morning to try and figure out what had gone wrong. Last night was truly a nightmare. The only solid block of sleep anybody got was from 2-5:40 a.m.

My biggest suspects were too many almond flour muffins or too many strawberries. Ellie had eaten both of these things in very small amounts and done fine, but then we got a little loose with the treats and that's when things went south. I also suspected beef, some spicy food we had eaten and wondered if the increased amount of probiotics was causing problems. So today I chose one thing to keep the same and took everything else out. I kept the probiotics the same, since that's the most important element of the diet. I completely removed the muffins, strawberries, spicy food and beef.

Adding some tools to the toolbox

Today was our first meeting with our new nutritional counselor. I was very impressed with her and really touched by how much she got what we were going through. I felt very believed, which is not a feeling I come away with after a doctor's visit. So that is a good starting point for a new relationship.

I believe this is Ellie 13th or 14th health care practitioner and retelling her health history has become an incredibly emotionally exhausting experience for me. After the meeting I just wanted to crawl into a corner to get over the emotional process of laying out all that's happened over the past two years. And in fact I did go home and had a really deep sleep during Ellie's nap.

Day 29: An unlikely menace

Spinach. Go figure.

So two nights ago Ellie slept through the night. Yesterday I fed her some soup with well-cooked spinach pureed into it. The spinach gave me a terrible stomach ache, which was the second time that had happened for me. Then, this happened (from my food/symptoms journal):

Ellie wouldn't go to sleep at bedtime - needed extra patting and singing. Up crying at 10:30 - reflux - nursed and went back to sleep. Up again 15 minutes later crying - Ian held in rocking chair for 45 minutes then back to sleep in crib. Up again shortly after that - I went in and not very kindly told her to go to sleep. Slept til 5:20 - tummy hurt - nursed and back to sleep in crib. Up at 6:40 - nursed/slept in bed until 9:30. 

Day 28: Slowly but surely

Last night Ellie slept through the night for the second time since going on Intro. Yay! She did wake up at 5:30 a.m., but that's really common for her to do the first night of sleeping through. If the trend continues, she gradually sleeps a little later each day. My response to this wonderful development is to not change anything.

I am on my second day of probiotics and S. Boulardii and doing fine besides increased tiredness. Maybe weariness is a better word. Ellie has seemed fine, except she's had a runny nose and lots of sneezing, which is unusual for her. No idea if that's related or not. If tonight goes well we may give Ellie a tiny bit tomorrow before her bedtime.

Days 26 & 27: A new game plan

The past few days I've been contemplating our GAPS journey thus far and looking for what's been working and what hasn't. I've come to terms with the fact that I need to let dairy go for now. After I ate goat yogurt two days in a row, Ellie was up for hours that third night with a tummy ache. So I'm letting it go. It's hard. Yogurt would be a great source of probiotics and calories for us, but it's not in the cards. I'm tabling all dairy for 3-4 weeks and then will try again, this time strictly following the protocol for starting whey on Intro, rather than jumping into eating amounts of yogurt that had been fine for us pre-Intro.

If I could go back and do things over again, I would not have trialed ghee. Ellie was showing a lot of progress just before that and we have still not recovered from the setback. It is a big lesson: be patient. Be OK with just hunkering down even in the middle of Intro for a little while if things are going well. I am feeling a lot more cautious with risky foods now. For example, one of the next things we should introduce is avocado and Ellie reacts to avocado (I think it is somehow related to her citrus allergy) so we're skipping it for now. 

Day 15: Operation Kraut Drop is in effect

As I wrote yesterday, we are working under a new theory, which is that even 1/2 tsp. of sauerkraut juice was way too much for Ellie. So today I literally started dosing out sauerkraut juice with a dropper. It's kind of ridiculous. BUT! It also worked.

This morning I went to drop the kraut juice in Ellie soup and she refused to eat anymore soup! So that told me she too has made the connection that the juice is making her sick. So at lunch I had to be sneaky about it and got two drops on a spoonful without her looking and which she happily ate. At dinner I was really bold and put three drops on her food. Results? Her face rash (which I'm pretty sure is due to excessive detox) has completely cleared, she took a longer nap than usual and woke up from that nap crying, but not hysterical. Hey, I'll take progress in whatever form it wants to come in. Then tonight at bedtime she went down without a fuss. Over the past week she's been crying for at least 30 minutes each night at bedtime and tonight she did great.

Day 14: Another recovery day

Ellie had another bad night last night so we just took it easy today and focused on Stage 1 soups with raw egg yolks mixed in. I think I am having a really hard time figuring out the probiotic piece of things - both in terms of what types of probiotics Ellie can handle and how much.

After discovering the hard way that it was way too soon for yogurt, I focused exclusively on sauerkraut juice and since she's still been doing poorly I've been wondering if I'm even doing the kraut juice wrong. I had been giving Ellie 1 tsp. per bowl of soup. Today I backed off that dosing. I skipped kraut juice entirely at breakfast (for her) and she had a great morning. I was able to take her out for a stroller walk in this gorgeous spring weather and she did not protest being in the stroller once. Very unusual! At lunch I tried just 1/2 tsp. of kraut juice with her soup. Within 20 minutes the face rash that had been fading away all morning was back with a vengeance, she was incredibly fussy and complaining that her tummy hurt. Aha! So even 1/2 tsp. is too much.