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!

The Budesonide Study (Appointment #3) and Hunter's BIG SURPRISE!

Hunter was supposed to have a full day appointment yesterday, but we had to postpone it for a later date, and instead, just had a regular 2 hour visit.

They took his vitals and did another blood draw. They used lidocaine to try to numb it a little this time, but it doesn't seem to make much of a difference, if at all. (That was the second time they tried it and one time they did it without). Next time, I think we are going to try emla cream, (which Tanner and Kaleigh both like) to see if it makes a difference for him. Hunter's veins are tiny. I think he's chronically (mildly) dehydrated which makes it even more difficult, and then he starts panicking, which the nurse said makes his veins "flatten." We've had the same nurse every time. She's really nice. She's always gotten it in one poke, which NEVER happened before; however, she has to fish around quite a bit...it's a much longer process than I would like and MUCH, MUCH longer than Hunter would like.

This time, Hunter turned very pale and was sweating, but cold by the time the nurse was done drawing his blood. She just kept asking him if he was ok and he said he was really tired and just wanted to lay down. His color and energy came back within a few minutes.

He has to fast for the blood draws, so as soon as she finished, I gave him his breakfast (Lays potato chips, raisins, and elecare (his elemental formula) - breakfast of champions! :) And for those of you who wonder what kind of parent would feed their kid potato chips for breakfast....well, the answer would be a parent who has a child who is allergic to almost every food. And just so you know, we are being followed by a registered dietician who not only knows we feed him like this, but who encourages it too! A year ago, he didn't have any foods that were safe for him, so he lived on just his formula, sugar cubes and ice....yep, I fed him sugar cubes or a bowl of brown sugar for his meals or snacks. He also ate (and still eats) plain shaved ice/snow cones...no syrup on it.

After breakfast, the dr. came in and checked him out. We reviewed symptoms/changes to anything/etc. One of his more obvious symptoms lately has been food refusal...just doesn't want to eat. In fact, from the nice spread I laid out for breakfast, he only ate a small handful of raisins and said he was finished. Elecare....I understand... (it tastes nasty!), but what kid WOULDN'T want potato chips for breakfast? He has also stopped eating spinach which he used to love. He won't even put it in his mouth any more, let alone eat it.

One thing that can be viewed as either a positive OR negative thing, (and I do view it differently on different days), is Hunter's energy level. He used to sleep A LOT....15 hours per day probably, sometimes more. He was very lethargic A LOT. He always wanted to be carried around and would often lay down wherever he happened to be...floor, couch, ground...didn't matter. Lately, he has had SO much energy...EXTREMELY HYPER....to the point of ME being exhausted. He is like the energizer bunny from the minute he wakes up at about 6:30 am until he goes to bed around 8:00. He' s not napping very often...used to nap A LOT. I don't know how much of this is just his age, maybe our good time of year here, something in the medicine that's making him hyper, or maybe it's the medicine actually working, but it's definitely different.

At the end of the appointment, the research coordinator had a nice surprise for Hunter. Knowing how obsessed he is with everything "firefighterish," she took us next door to the fire station where she had arranged for the firemen to give him a tour and let him feel like a real fireman for a while. They showed him the trucks, let him hold some of the tools (that were bigger than him), answered his questions, and let him sit in the truck. Then, the best part...one of the firemen looked at Hunter and asked if he wanted to drive around the block in the fire truck. So, we buckled up and off we went! He even turned on the lights and the sirens and Hunter Was In Heaven!!! When we returned to the station, the other firemen had the hose hooked up and ready to go. With a little help, they let Hunter spray water everywhere. He had so much fun! Definitely a day he'll remember for a very long time!

Endoscopy results are in

One good and one not so good. It's weird...I think I feel worse this way than if they were both bad. It creates a whole new set of problems that I didn't think about.

Kaleigh was surprisingly the good one....0-few eos everywhere...nothing increased, mild gastritis (which she's always had and the GI said was very common and not that big of a deal). She's the one who has been so sick...so maybe it's not EE related???

Tanner's was strange. He had 19 eos in his mid, but only 1 in proximal and 1 in distal. I could see the higher number being at either end, but not in the middle...unless, it's because it's patchy and the dr. just happened to get the right spot (in the middle anyways). Not only has Tanner NOT had symptoms, but he has also gained about 10 (much needed) pounds since starting peanut in November, and actually he gained it all in the first two months or so. I think it took him the last 5 years to put on that much weight, so this was HUGE for us and him (dr. talked about tubing him at his November visit if he didn't start gaining).

So....we will not be adding wheat right now for him. Since he has been doing so well AND gaining weight AND peanut is his absolute favorite food in the world AND since we are fairly confident that environment is playing it's part AND since all his other numbers were really low and the one in his mid wasn't super high, we will keep both egg and peanut for right now. The dr. wants to keep him on the same diet and rescope down the road before adding anything else in. This should give us more information regarding the environmental component as well and be 100% positive before we remove our favorite food in every sense of the word.

So here's the problem....Kaleigh REALLY REALLY wants wheat. *I* think it'll be really hard (especially from a cooking/baking standpoint) for *me* to have one on wheat and one not. Granted, there are some things that she'd be able to have that are easier, but I do not want to make any more meals than I'm already making. I don't want Kaleigh resenting Tanner because of this. It's *my* decision. He can't help it. Not easy for a 10 year who LOVES AND MISSES food to understand.

Since Kaleigh failed egg (we think) last year, I am going to retry this with her again (if she's willing), especially now that her scope was clean and she's been healthy for a few weeks. I'm hoping I can convince her that she can get a lot of good stuff from *just* egg, but I know she had her mind set on wheat. By doing this though, it would put both of them back on the exact same diet (which, selfishly, would be HUGE for me).

I may change my mind, but this is where we stand right now. I still need to talk to the kids after school.

Liver enzymes are normal again

Hunter's blood work came back showing normal numbers again, so we will just wait and watch as we go along. The liver enzymes get checked automatically t/o the study so hopefully, we don't have any more issues. At least for now, we feel comfortable that they look good.

Endoscopies for Tanner and Kaleigh

Tanner and Kaleigh both had upper scopes today. Everything looked great visually (which in itself it huge as they've always had furrowing, rings, inflammation and/or exudate for all their previous scopes.) We have to wait for a couple days to get the official results after the biopsies are read.

They both came out of the general anesthesia quickly and calmly. The anesthesiologist routinely give zofran (for nausea) now. After the kids' first scopes when they vomited afterwards...in the car and at the house...a LOT...the rest of the day, and just overall felt horrible. What a difference the zofran makes. We left the hospital about 30 minutes after they woke up. They were a little groggy, but by the time we got home 45 minutes later, they seemed almost completely back to normal.

We took it easy today...played monopoly, jenga, and computer games as well as watched a movie. By the evening, they were both complaining of pain from where the biopsies were taken, and both were in tears at one point. They usually don't seem to have a lot of pain...just a minor sore throat, but this time, they have distinct spots that are bothering them.

They took a little ibuprofen, ate some ice cream, (coconut milk-based), and are now sleeping. Hopefully, tomorrow they'll feel a little better.