Friday, January 5, 2018

All Quiet on the Eastern Front

Mandarin Characters for "Tranquil"
Happy New Year! I feel like I've been "away" for ages. My daughter is now 9 and in a homeschooling Girl Scout troop, since last year, and things have been pretty busy! We were also hit by the viral hurricane that went all around the country, and were down for the count for a week or so. We're all better, now, thankfully.

We're still in treatment with Dr. Li, though I will say that being sick threw us off course for a while, and we're working on getting back into the full swing of things. We're nearing 4 years of treatment and it can be really hard to maintain the full set of protocol items, but we're doing the best we can. The pill-taking is a breeze, but the other protocol components can be hard to keep up when you're not feeling up to par. 

We have an in-person visit with Dr. Li set for late March and I'll be interested in talking about next-steps and having "where do we go from here?"-type discussions. I feel like we're in a place where quite a few food challenges are possible, but it always seems so hard to find the right time for them.

One thing we are working on, is introducing wheat into my daughter's diet. We're doing this slowly, with a special process for preparing the wheat, combined with some treatment elements (from Dr. Li's protocol), in the hopes of making it a smooth process. Wheat can be hard on anyone's stomach, especially for someone who has never had wheat as part of her diet.

I debated introducing wheat, back and forth, for years. The deciding factor ended up being that I felt it was good to have as an option, so we could try baked egg, some day. I know the science isn't definitive, but there are some studies showing that egg baked with wheat binds in the "wheat matrix" in a way that improves tolerability, versus egg baked into gluten-free flour. I know it's not "required" but I think it might be helpful. 

So far, she has had the specially-treated wheat twice, 3 days apart. There haven't been any obvious issues, but we will see how things go, over time, as wheat can sometimes cause delayed gastrointestinal symptoms. Luckily, I am not overly concerned about anaphylactic reactions, but I will certainly keep my senses on alert, as always, when introducing a new item. I feel that things are moving along, albeit slowly, but there isn't much to report at the moment, so it has been pretty "quiet" around here, allergy-wise, which is fine by me!

I hope 2018 treats everyone well, and is a nice "quiet" year for everyone. 
(Unless it's something good, in which case, make a lot of happy noise!)

Tuesday, July 25, 2017

Sesame Challenge Passed!

My daughter had a sesame challenge on May 11th and she passed! I posted about it on a Facebook group, but just realized that I did not blog about it, here. :O It also felt surreal for her to pass the challenge, so I kept waiting to make sure it was "real" and so far, so good! 

Sesame has been on my list to challenge, for quite a while, and we finally got around to it. It can be so hard to find a time to plan one when you don't have other things going on, but I realized that I really need to get going on these, or it will take forever to get through them all.

Sesame fell into the category of "high IgE but no reaction history". Her IgE to sesame had been as high as 15, then was almost 3 before treatment and then dropped down and hovered in the high 1s, low 2s.

Back in 2015, we did skin prick tests (SPTs) for a few foods, including sesame and flax, and they came out positive, so we were told it wasn't time for a challenge, yet. As time passed, I felt that the SPTs were lagging indicators and I also felt that the IgE levels just weren't going to get to be negative. Treatment with Dr. Li's protocol seeks to regulate the immune system and after a while under treatment, standard IgE testing becomes less and less easy to read as an "up bad/down good" indicator. Though there is an expectation that IgE will fall over time, it may never get back to a pre-allergic level. There's a long story there, but for now, let's focus on the sesame challenge.

For the challenge, I made "tahini cookies" which are pretty much peanut butter cookies using the tahini (ground sesame seeds) in the place of peanut butter. I used the Kevala brand, as their tahini is made in a facility that only processes sesame seeds. I chose tahini, over sesame seeds, because I had read that people sometimes have delayed reactions, when the stomach breaks down the outer seed and gets to the protein. Even with as nervous a person as I can be, I wanted the highest-protein version, so I could be sure that any other forms would only be a lesser risk.

Throughout the challenge, my daughter didn't really have any major issues, thankfully. She sprouted this light pink spot she gets, sometimes. I can't even call it a hive, because it's so small and not raised and it vanished before I could even load my camera option on my phone. Somewhere into the second dose, though, I did see her shrug her right shoulder toward her ear and she was headed toward her ear with her "pinky" finger. I asked her not to touch her ear, but I got the sense it was a bit itchy. I took pictures of both ears and noticed that the right one was a bit pink (more so than really shows in the picture, but not bright red, either.) The funny thing is, when I had some of the same cookie batch the night before, I had an itchy right ear for a bit. :P Anyway, I told the doctor, and she decided to make the next "dose" a little bit smaller. The subsequent "doses" were all fine and her ear went back to normal, without intervention.
This ear turned a bit pink...
This ear was fine.

They had us wait 1 hour after the last dose, but said we could go after that, since it went so well. During the 1-hour waiting period, her cheeks were a little pink, but she was lying down, so tired from having gotten up early. The pinkness didn't last and I've seen the same pinkness on many days when we haven't done anything out of the ordinary.

One thing that did calm my nerves a bit, even though it's not definitive, was that she is negative to Ara h 1, which has 80% homology with Ses 1, one of the main sesame proteins. I told myself that it boded well for her challenge, but I also don't want anyone to fret if their child is Ara h 1 positive, when it comes to sesame. She eats plenty of legumes that are supposedly "botanically cross-reactive" with her other allergens, so it's all relative.

I'm happy to cross another food off the list and hope to narrow things down to just the "big ones". She also passed a home "challenge" of fish (Ian's fish sticks). Cod tested negative, always, but I was nervous about fish. The Ian's fish sticks are actually pollock, but it was still OK. She's also still happily eating pinto beans, which were positive on that SPT a couple of years back, so I still look at SPTs sideways. :Þ

Thursday, February 9, 2017

Auvi-Q Direct Delivery Service

for arranging a conference call with kaléo to go over details of their Auvi-Q AffordAbility plan. 
(By the way, FABlogCon Early Bird Tickets are $50 off full-price until 3/15/2017!)

The time to submit your forms for your Auvi-Qs is NOW! As I mentioned in an update to my earlier post, forms are already being processed ahead of the 2/14 release date, so if you are interested in getting your hands on some Auvi-Q sets, follow the steps shown, below.

Auvi-Q Direct Delivery Service

Reasons to go with the Direct Delivery Service:
  • It comes right to your door! I like to think of it as "Auvi-Q Prime" as it arrives in 2 days. :)
    • You have the option of having it delivered to your allergist, as well, if that is more convenient, due to your schedule, or local weather patterns.
  • You'll get "fresh" devices. Pharmacy stock can vary and we've all heard the stories of picking up EAIs with only a few months left before they expire. The devices going out on 2/14 have an expiration date of April 2018. Delivered devices are expected to have a minimum shelf-life of 12 months. 
  • Using Direct Delivery will ensure that you get the Auvi-Q device that your healthcare provider prescribed and won't have it substituted for another device preferred by the pharmacy.
  • Pharmacy stock will take time to proliferate so most pharmacies will not have devices in stock on 2/14. Also, not all pharmacies will be trained on the access program. If you do go to a pharmacy, and you/they need assistance, call 1-877-30-AUVIQ (1-877-302-8847.)
After you've submitted your form for Direct Delivery, make sure to take their confirmation call! The call will come from (844) 357-3968. If you're like me and tend to ignore most "Unknown" calls, you might want to save that number to your contacts, so you'll recognize it when they call. They will confirm your coverage and your delivery address details. You'll also want to save that contact number for refill requests.

If the Auvi-Q is your preferred device, submit your form ASAP!