The Budesonide Study (Appointment #4...I think)

Hunter had his easiest appointment yet today. This one did NOT require a blood draw...yippee!!! It was just vitals and quick exam/symptom check by the doctor. He has been having undigested food in his stool (I'm getting pretty good at all these medical terms, aren't I?!) quite a bit lately but it's hard to tell if it's something viral or what. Overall, he is still doing very well...happy and full of energy. He was so nervous though, asking every single person we came in contact with if they had needles and if they were going to poke him today. :(

In three weeks, he'll have another endoscopy to check for eosinophils again. This will be interesting to see if they're still there or have gone away since the one he had done at the beginning of the study. They will also be combining his "big appointment" on this day, so he only has to have the IV put in once. We will stay at the hospital all day (endoscopy time plus 9 hours for the study visit) and have blood draws every hour (or two?) After this, I believe there will only be one more appointment a few weeks later to conclude the study.

So Far, Soy Good

Tanner and Kaleigh have been doing very good overall on soy. They've been getting the bulk of it from edamame. They love popping them out of the pod and eat them hot or cold. They both have had some minor choking/gagging since starting it, but nothing bad enough to warrant removing it from their diet without knowing for sure. We'll wait and see what the biopsies show. If they're bad, we'll know that this was probably a symptom. If not, it was a fluke. They have no other symptoms at all though!

National Eosinophil Awareness Week

Today marks the first day of National Eosinophil Awareness Week. Beginning last year, and every year going forward, the third week in May is dedicated to spreading awareness and education about eosinophilic disorders.

The following video was created by an Arizona mom who has a child with EE. She spent hundreds of hours planning, shooting, editing, and copying, all for the purpose of spreading awareness as well as educating the public, and hopefully helping in fundraising efforts as well. She is an amateur, but you'd never know it watching it. I think she did a phenomenal job putting it all together.

Along with many other Arizona families, Kaleigh, Hunter, and I all participated. Please take a few minutes to watch if you haven't seen this yet, and feel free to pass on the link to others as well.

I'm having trouble loading the actual video but if you search under "Life Without Food" on youtube, you should be able to view it.

A conversation between Tanner and I the other day

Tanner (very serious): "Mom, can we stay up late tonight?"

Me: " I'm going to be gone all day tomorrow, so you can ask dad since he'll be the one dealing with you tomorrow."

Tanner (laughing hysterically): "YES! Dads always say yes to stuff like this cuz they don't really know how to take care of kids or anything!"

We're going to Denver again

I got a call the other day from our allergist at National Jewish, or NJ, (#1 respiratory hospital in the U.S. and home of the multi-disciplinary Eosinophilic Center). Here's what he wants us to do:

Tanner Keep peanut and egg, despite 19 eos in mid-esophagus (0 in other areas). AND add in soy!!! Scope next month when we are in Denver.

Kaleigh Continue with egg for another week or so AND add in soy at that point (assuming no reactions to egg)!!! To make it easier on everyone, both Tanner and Kaleigh will start soy at the same time. Scope next month when we are in Denver.

Hunter Continue with study. His 12 weeks will end right before we go to Denver so he'll be having his second endoscopy as part of the study the week before we leave. We will get the slides to Denver where they will determine whether we go backwards, forwards, do some food challenges, look at continuing with budesonide, etc. He will obviously NOT be scoped there since he would've just had one. The dr. did NOT sound like adding foods back in with 15 eos in a couple places was a good idea, so I'm really really hoping that number goes down...whether it's from the environment or the budesonide. They may plan some food challenges for him if the numbers go down. I REALLY REALLY want to add in more foods for him and am getting impatient and occasionally kind of sad about his diet. *He* however, is ok with it for the most part.

He said we will plan on doing all allergy testing and appointments on Day One. Depending how the numbers come back for both allergy testing and scopes, we will talk about adding in the next food (wheat probably) or taking a break for a while.

The following day, Tanner and Kaleigh will be scoped. We are trying to keep our trip short this time around, so we should be free to go home after that. We'll probably stay until Saturday, then head home.

So...official appointment dates are 6/25 and 6/26, with travel probably the day before and the day after! I am a little uneasy about how he wants to proceed with Tanner's diet, but completely trust him at the same time, so I'm going to go with it and hope for the best. I feel confident that if it doesn't go well, that he'll have a good back-up plan. And honestly, both Tanner and Kaleigh have such good diets right now that it wouldn't kill us to have to back track a little...a little disappointing yes, but not the end of the world.

I'm taking the kids by myself this year. They had to tweak the scheduling a little so I don't have 1 kid getting an edoscopy at TCH (The Children's Hospital) while another is at NJ. Both hospitals are part of the program and not too far from each other...fairly easy drive.

Allergy Shots

Tanner has been doing allergy shots for a couple years now to help with his environmental allergies. He gets one shot in each arm every visit. When he first started, we were going 2x per week, then 1x per week, then 1x every 2 weeks, until we finally worked up to his "maintenance" dose that he goes in for every 3-4 weeks. We always have to stay at the allergist's office for 30 minutes after the shot is given to watch for reactions. Normally, the sites where the shot was given get just a little bump, like a mosquito bite. They itch, but he's given ice to hold on it while we're there and they spray it with some anti-itch stuff right before we leave.

Normally, it's relatively easy (easy for me to say since I'm not the one getting poked...). He has had a few reactions during this time though, which always reminds us about the seriousness of allergies. Once he had just a localized reaction where his arm from his elbow to armpit turned red and very swollen. It was hot to the touch and itched. This came and went several times over the next couple days. He's also had two times (including one of his recent visits) where he had facial swelling. These are a little more scary to see, but I feel comfortable knowing that we are in the best possible place for a reaction to occur. Honestly, I feel safer in our allergist's office than I would if we were in the ER.

Each time, he's been observed a little longer to make sure it didn't progress (which it didn't) and he's been given extra antihistamines. The following dose, they then split in half and he has to have them a week apart. Then, we go back to our old regimen.

Next month, we have a regular appointment with the allergist to review how it's going and see if we want to continue. The plan typically is to do shots for 3-5 years, then stop for 3-5, then possibly go back on them if symptoms start returning, which they may or may not.

Tanner's symptoms prior to shots were horrible. He would scratch around his eyes and nose until they bled. He also had very uncomfortable hives, eczema and other rashes after he'd play outside, especially in the grass. His hands and feet would turn red, itch and swell after playing in the grass too. We had him allergy tested and he was moderate to high positive for everything in the environment except for dogs (whew! since he's a dog-lover and we have one.) He still takes daily medication to help control some of the symptoms, but has drastically improved since starting the shots. For someone who hates needles and cried his first shot (before it was even given), Tanner is the first person to tell you that it's worth going through it. The shots are nothing compared to what he was feeling before.

Kaleigh is trialing egg

We ended up adding egg to Kaleigh's diet to see if she can handle it...so far, so good. It's been about a week and she has no symptoms whatsoever. Last time we tried it (July, 2008), she got really sick within about a week. It can take up to three weeks for symptoms to appear, but we're somewhat hopeful at this point, and hoping last year was just a coincidence/timing.

She's been eating scrambled eggs about 3x/week and is excited to try other things with egg in it, like tapioca pudding and french toast (made with her special bread). I'll update with a pass or fail in a couple weeks!