3rd annual peanut allergy update

Lorelai had her annual allergist appointment at the end of January and exactly like last year, there's good news and not so good news.

First, the good news. We did a full nut panel (skin and blood tests) for the first time, which I requested because I really wanted to know whether she was also allergic to any tree nuts. The skin tests for pecan and brazil nut came up slightly positive, but the blood tests on all nuts came back negative. Woohoo, no tree nut allergies!


Marks for all the other 5 nuts were not measurable.

And she was also really good for the entire appointment, even though we had to wait FOREVER and they took a bunch of blood from her. She didn't shed a single tear! She still won't let any doctor near her ears with the otoscope, but she's come SUCH a long way since her early days of sheer terror at any kind of doctor visit.



HOWEVER. She still can't actually have any tree nuts on the advice of her allergist, since there's a high probabability of cross-contamination with peanuts, and the high co-existence of peanut and tree nut allergies. The doctor doesn't want her to develop any new nut allergies. So we continue to avoid any and all nuts (except coconut, which she's negative for, and it's a fruit) until/unless she grows out of her peanut allergy.

More bad news: the dip we saw last year in her peanut allergy levels that gave me such hope that she'd outgrow it were apparently a fluke. She's back up to her initial level when we first had her tested. According to her doctor, "The dip in the level in 2013 is not uncommon in food allergic children as there is some variation in the annual levels seen. The reasoning for this fluctuation is not well documented in the literature. This peanut IgE level of 5.06 along with the skin test greater than 5x5 mm screens out offering Lorelai a challenge to peanut this year."

Component Value
• IgE Allergen Peanut 5.06
• IgE Allergen Almond Nut <0.35
• IgE Allergen Brazil Nut <0.35
• IgE Allergen Cashew Nut <0.35
• IgE Allergen Hazel Nut <0.35
• IgE Allergen Pecan <0.35
• IgE Allergen Pistachio <0.35
• IgE Allergen Walnut <0.35
• IgE Allergen Coconut (Fruit) <0.35


REFERENCE VALUES for serum IgE levels
Class IgE kU/L Interpretation
0 <0.35 Negative
1 0.35-0.70 Equivocal
2 0.71-3.50 Positive
3 3.51-17.50 Positive
4 17.60-50.00 Strongly Positive
5 50.10-100.00 Strongly Positive
6 >100.00 Strongly Positive

Big fat bummer. Although it doesn't change anything we're currently doing to manage her allergy (avoidance, epi pen on hand), it just means that she's much less likely to outgrow her allergy before she enters kindergarten, where she'll be in a much less controlled environment than her peanut-free daycare. I know there's so much more awareness these days, but that still doesn't ensure her safety. If someone could tell me without a doubt that she won't have an anaphalactic reaction to peanuts, I'd feel better. But there's no way of knowing, so I picture the worst case scenario and get all mama bear scared for her. :(

At least we haven't had any scares (knocking on all kinds of wood here!!) or problems with avoidance, and the boys are still really good about looking out for her, so she's got lots of people around to protect her. Fingers crossed for a legit downward trend soon though!

3 good things

1. Lorelai's allergy report came back and it's good news! She's down to 2.36 from 4.95. Doesn't mean we do anything differently for now, but it gives me hope that she could outgrow it at some point.



2. Haircuts with no tears this time! Aidan got ALL his hair chopped off (part of me misses it though) and now I can see his eyes. Adam and I gave in to Logan begging for a mohawk, and I have to admit that he was right--it's cool.




3. Clearance shoes from Target! $6 flats (originally $20) and $10 heels (originally $33). So what if the heels killed my feet this weekend? Still a win, in my opinion ;)

Linking up with

Peanut allergy update

Lorelai had her annual appointment with the allergist last week and there's good news and not so good news.

First, the good news. Unlike last year, she was AMAZING for the entire appointment--skin scratch test, blood draw and all! No major freakouts and only one minor freakout when she didn't want to have her mouth or ears checked (no big deal to the doctor). I'm SO freakin' proud of her, considering her previously intense fear of the doctor.


all smiles, even ready for another bp check :)

I'm kind of patting myself on the back for turning her onto the wonders of Doc McStuffins (a Disney Jr. show) last fall and getting Santa to bring her a doctor's kit for Christmas. She was so excited to go see Doc McStuffins, even when I explained that our doctor's name wasn't Doc McStuffins, but she does checkups and helps people feel better like Doc McStuffins does. We sang the theme song over and over again, and Lorelai was hardly apprehensive as we went back to the exam room.

It also really helped that the nurse who weighed/measured/took her blood pressure had Doc McStuffins stickers and bubbles to help distract her. At the end of the appointment, the stickers are what we looked at during her blood draw, and she barely even flinched! (Thank goodness for another wonderful nurse who actually got her vein on the first time and didn't have to dig around like last time.)

Whew! Such a relief on all of our parts after a couple of other fairly traumatizing doctor visits.



And...for the not so good news. Not only is she still allergic (what? I was totally hoping her allergy would magically disappear, don't tell me I'm crazy!) but her skin reaction was worse this time compared to last time. To be fair, the doctor said that doesn't necessarily mean her blood IgE will be worse. But it does mean that she doesn't qualify for a food challenge yet, and we have to wait a year before we go back to see if her levels have gone down at all.


The peanut in on the left, the histamine is on the right, and the saline is the tiny speck sort of in the middle. We told her they were drawing a face on her, so I took pictures to show her the "eyes" and convinced her not to touch and mess up the "red marker" on her back.


See, my ultimate hope was obviously that her levels would be low enough to qualify her for a food challenge (the doctor talked it up like it was an actual possibility since we met at least one criteria, they would actually feed her increasing amounts of peanut butter under close supervision at the hospital) and if she passed, we wouldn't have to worry so much about her when she goes to kindergarten. I know we have a few years before we get to that point, but if her allergy really is getting worse...well, cue mommy freakout.

Of course, part of me was relieved that we don't have to go through the anxiety of potentially watching her have another reaction, however supervised it would be. But my anxiety over her going to public school with a peanut allergy is so much worse.

For reference (and my memory), here are her levels from last year, and her skin reaction measured 8x8, I believe. Her skin test this year measured 14x8, but we won't know her new levels for at least another week probably, so I'll reserve my freakout until then.


IGE AB ALLERGEN PEANUT 4.95 kU/L
*************************************************
REFERENCE VALUES
Class IgE kU/L Interpretation
0     <0.35 Negative
1     0.35-0.70 Equivocal
2     0.71-3.50 Positive
3     3.51-17.50 Positive
4     17.60-50.00 Strongly Positive
5     50.10-100.00 Strongly Positive
6     >100.00 Strongly Positive
**************************************************

I don't even know how likely it is that in a year they'd drop within range of a food challenge (I think she said it should be below 2 kU/L), but the way the doctor was talking it up, it seemed like it wasn't unlikely. So all we can do at this point is keep doing what we're doing with avoidance and keep our fingers crossed for a trend down next year!

And if anyone has any positive stories about growing out of a peanut allergy, I'd love to hear them!

PS: I don't think I ever posted a follow up, but thankfully, her skin reaction to the fish last year was a false positive.

Halloween sucks for the peanut allergic

This is Lorelai's first Halloween that we've known about her peanut allergy (we suspected it last year, but weren't going to give her candy anyway) and after looking at her haul from last night, I realize just how disappointing this might be in years to come. There's literally almost nothing in her bucket she can safely eat.


what she got vs. what's safe for her to eat (not sure if milk duds are safe, but they're too hard for her to chew)

I remember back in the day, this was my ideal bucket. It's the "good" candy—none of that bubble yum or generic hard candy crap that I would almost always throw out when I was a kid (or give to my mom...).

Of course she doesn't need the candy at all, even if it is safe, so this seems like such a petty complaint right now. But because of the boys, she's already asking for treats and she knows what her candy is, so it's hard telling her she can't have it.



I also know that candy isn't the only fun thing about Halloween (just like Christmas isn't just about the presents), and she did have fun dressing up, trick or treating and decorating her pumpkin, but it's such a tease to tell her to go ask for candy and then take it away from her right away. It's like having her open presents and then taking them back. No bueno!



Not sure how we'll handle this in years to come, but suggestions are welcome! In the meantime, at least Adam and I have a ton of good candy to share without feeling guilty about swiping it from the kids. :)

Wise words Wednesday: Worry

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What does it say about me that I have multiple quotes about worry pinned on Pinterest? Oh right, that I’m a mom. All this talk about not worrying is clearly for people who don’t have children. I try not to let worry consume or overwhelm me and in general (except for when I was pregnant and hormonal) I think I do a pretty good job.

That said, I’ve been doing a lot of worrying lately about Lorelai and her allergies. I was told not to google ‘peanut allergy’ willy-nilly because there’s a lot of misinformation out there (surprise! I haven't...yet). The doctor directed me to http://www.foodallergy.org/ for reputable information on allergies. I started there, and what do I see on the home page? “Latest News: Fatality in Chesterfield, VA Reported.”

Rationally I know that food allergy fatalities are very rare. Adam pointed out that there’s a better chance of dying in a car accident (which doesn’t help much because now I just feel worse about cars, obvs). But it’s just one extra thing we have to worry about with Lorelai that we don’t with the boys. And not even just dying. Almost dying from anaphylaxis is enough to put me over the edge with worry.

I don't want Lorelai to have to worry or be scared either. She's obviously too young to know what's going on now, but as she gets older this will be a huge burden on her. I don't want that for her. I want her biggest worry to be what shoes to wear.

Silver shoes or pink shoes? Pants or no pants? These are the first world problems I want her to have. Sigh.

I’m eagerly awaiting the results of the blood test with the hope that it’ll lesson some of my concerns if her levels are low. But since there’s no way to know what her reaction will be and to what amount, I think I’ll just be in a constant state of worry, pretty much just waiting for something bad to happen. Not a good way to live, and it'll get me nowhere. Rock, rock, rock...

So in summary…










Pardon the language (mom). If you’re not offended by such language, do yourself a favor and watch this hilarious video about the honey badger. Just not around kids or anyone who would be offended by bad language :)

Peanut allergy: confirmed

We had Lorelai's appointment with the allergist today, and after a skin test, her peanut allergy was unfortunately confirmed, and bonus! We're also probably looking at a fish allergy. I had them test her for that because she started throwing up after she ate fish sticks at daycare.

It was a really rough appointment, to be honest. From the moment the nurse tried to take Lorelai's blood pressure, she went into full freakout mode. I had to hold her on the big scale to get her weight and we had to literally pin her down to get her length and have the doctor look in her ears and nose. When it came time for the skin test where they put a dab of the allergen on her back and make a small scratch, she was a complete mess. We finally got her to calm down during the 15-minute wait for a reaction, but as soon as the doctor opened the door, she started crying again. Even just barely touching her back with a ruler to measure the reaction was a huge fight.

In addition to the allergens, they scratch the skin with a histamine control (which she should react to no matter what) and a saline control (which she shouldn't react to). She reacted immediately to the peanuts, and her hive got bigger than the histamine. The fish didn't react as quickly or as strongly and initially the doctor said it didn't look like she had a fish allergy. However, as time passed the fish reaction became stronger.

Lorelai's back. They did the fish twice because while Lorelai was squirming,
we thought my hand might have wiped the first test off.

They also did a blood test, which was absolutely horrible. The phlebotomist missed her vein two times and ended up digging around in there till she got one. Lorelai's all bruised and I'm traumatized :( I hate needles and have had bad experiences with blood draws and IVs myself.

We won't know for sure about the fish allergy or how allergic she is to either until the blood tests come back in about a week. And unfortunately, no test can tell us how severe her reaction will be. We got a prescription for an epi pen though, just in case. We go back in a year to test again and see if anything has changed. Apparently, if the level is low in the blood test, she has a better chance of outgrowing it.

Now it's just a matter of doing tons of research and educating ourselves and the boys on the ins and outs of food allergies. Fortunately, Duke is one of the top research hospitals for food allergies, and they're conducting several studies right now on peanut allergies. I have no idea yet if we'd consider participating in one of the trials, but the doctor did mention it as a possibility (they've got one going now for children 18 months to 3 years called the DEVIL study). Regardless, we're in good hands and the doctor seems optimistic that with all the research being done, they'll probably find a cure within Lorelai's lifetime. Here's hoping...

But bottom line? This sucks.