New year, new hurdles.

Happy 2015!

I think I probably qualify as worst blogger ever since my time here is few and far between, but I thought I would pop in today for a few updates.

• B is a middle schooler now!  How did that happen?  She goes to Outdoor Ed for 5 days next month and I am freaking out.  The camp has all sorts of things in place to ensure her safety but I'm an allergy mom so I guess there's no getting around the 'what if...?' scenarios.  I would love to hear how any of you out there have handled this.  I haven't sent her off to camp or anything so I am completely out of my comfort zone. No parents allowed - this is a first for me!!
• Last month we had a blood draw for a RAST and Component Testing.  Saw our allergist a few weeks ago.  More on that in a second.
• B finally feels ready to take part in the SAFAR trials, so I added us to the waiting list. Hopefully we'll get a chance to participate soon.  With the latest, incredible $24 million donation, the trials are very popular. It's definitely not an easy road, so it had to be her decision.  I'm glad she's brave enough to want to attempt it now. 
• Speaking of being brave, B's anxiety levels are really tapering off.  She panics way less now about food related activities and we find ourselves going out a bit more to dinner and she eats at friend's houses without much issue.  Sure, there are some times that we go places and she doesn't eat anything (and is no doubt starving) because it doesn't feel safe to her, but I'm proud of her for learning how to navigate the world within her comfort zone.  I know it sounds weird, but I was really proud of her when she told me that now she'll eat something before she goes out, just in case she can't find anything safe to eat at her destination.  It just shows her thinking about this now - planning for the unexpected and still going somewhere that might not offer a safe choice - does that make sense to you guys?
• I've been avoiding Facebook lately - does anyone else find it a HUGE time suck and anxiety causing, inferiority complex building, site from hell? All joking aside, I feel way less stressed now that I only go on occasionally (as in 3 times since the beginning of the year).  I am, however, on Instagram.  Follow me there if you'd like!
• This latest discovery isn't helping my mood.  

So, here's our news for the RAST, Component and Skin Testing.

B is still allergic so we wont be changing the way we do anything around here.  So there's that.

BUT...

Her negative RAST has now turned into a positive one (in the 'high' level) and her Component Testing showed her in the reactive range for ara h1 and ara h2 (see the chart on this page to see what that means).  Rats.  Throw in a nice big positive skin test and we stay in the land of the allergic.  So, when we saw the allergist, he strongly recommended the clinical trials at Stanford.

And I think that's about it.  I've been working, crafting (proof is on Instagram), decorating my new place, and still seeing the caddy.  Life's good.  Hope it's the same for you.

Stay safe out there.

xo G

Peanut Allergy: Is it Possible to Have a MILD Peanut Allergy?

Twice in the last week, someone I've come in contact at school with has brought up the concept of having a 'mild' peanut allergy. Is there such a thing?

Case 1:
We have this thing in B's class where parents bring in a snack that corresponds to a letter - so someone will bring blueberries for 'b' day, apples for 'a' day, you get the picture. So it's c day and I find out what the snack is (hoping for canteloupe). It's corn muffins - rats. So I ask if the parent has brought in a label or ingredient list. B's teacher says 'B should be able to have them - X's mom made them and he has a peanut allergy too. But his is mild, unlike B's'. I was about to give her a speech about how there are no mild nut allergies, but I shut my trap. (I've come to find out that this boy doesn't have an epi or any meds in class either - avoids peanuts, but still has mixed nuts, Planter's I suspect, in his lunch on a regular basis. yikes. That's fodder for a whole other post though.) Did I let her have the muffin? Nope. She got a treat from her treat bag.

Case 2:
B had another substitute teacher. Her first sub had a daughter with a peanut allergy (such a relief!). Today's sub was fine when I told her about B. She mentioned that her daughter is allergic to bees and is well versed in the epi (another relief!). She asked me the level of B's allergy. Was it mild? This time I did explain that there is no mild allergy, at least in my opinion. But I showed her where B's epi was in class and she was prepared. No snack today (kids bring their own most days) so I stressed to her that there shouldn't be an issue and just stressed the meds were there just in case (that's when I discovered the kid from case 1 didn't have meds in class).

So my stance is that there are no Mild Peanut Allergies. That being said, REACTIONS can be classified as mild, but a peanut allergy itself? I wouldn't go there. You can have a mild seasonal allergy but with a nut allergy, all bets are off. I haven't done a tremendous amount of research on the subject, so I can't send you to the scientific literature on pubmed, but I can say without a doubt that you can have mild reactions for years and then experience anaphylaxis, and death due to peanut ingestion. I'm just a few degrees of separation from someone who learned it the hard way.

And that's not a chance I want to take (I know - I'm so boring). So to whom it may concern: B has a severe allergy. Until that skin test and food challenge comes back negative, let's keep it that way.

In my personal opinion, people who treat their nut allergy as mild are playing with fire. What do you guys think? Has your allergist described your (or your child's) allergy to nuts as mild? Ours errs on the side of severe, no matter what the numbers say.

Preparing A Child for a Blood Draw

Parents of kids with peanut allergies eventually face the dreaded RAST. I can't say that our experience went as smoothly as possible, but I guess we did something right since B doesn't freak out every time we walk through the doors of the medical clinic.

At our monthly support group meeting last night, a mom was asking for advice on her child's upcoming RAST. They had such an awful experience in the past and this mom was trying to find a reputable lab with experienced staff who would make it as painless as possible (for both of them). She's definitely not alone. I felt the same way last year.

So what's a mom (or dad) to do?

What's the best way to prepare your child for a blood draw and possibly try to make it a (gasp!) semi-enjoyable experience? Who am I kidding? How about just getting through it without too many tears and permanent emotional scarring?

Here are some suggestions I found online for preparing for an upcoming draw (are the wrong? are they right? who knows!?!):

• Heat packs applied to the crook of the arm can help to dilate the veins (which results in an easier target for the draw).
  
• Make sure your child is well hydrated prior to the draw. It increases volume in the veins, which helps phlebotomists find the vein more easily.
  
• Take your child when you donate blood - you can explain the process to them and show them that it may hurt just a bit at first but that it only lasts a second and that they'll be ok.
  
• Don't be afraid to ask for another person if they just aren't getting a vein by the second try (see the first link below for a great way to address this possibility before it even happens).
  
• Ask your pediatrician to do the draw themselves (yeah, uh, I don't think B's pediatrician would do this - she's super cool too)
  
• Ask for numbing cream (EMLA) to apply to the arm 30 minutes before the draw to avoid some pain with the needle stick.
  
• Bribery (heck, a big ol' lollipop and pinwheel worked wonders for B). Of what I've read it's really important not to dangle a treat in front of your child and promise it only if they don't cry. I think the stress of the experience is enough to make you weepy, let alone the actual needle in your arm.
  

There are a countless number of sites online that have additional advice. This one is great. Dr. Greene is answering a question about kids who have to get blood work done alot, but considering that allergic kids need to go back each year in many cases, his tips apply (although I'm not sure that our doctor's office would accept 'goodies'). He has some fantastic advice - I highly recommend that you read it.

A few other sites to check out:
http://www.labtestsonline.org/understanding/testtips/kidtips-2.html
http://www.developmentalspectrums.com/index.php/Testing/tips-for-blood-draws.html

What's your advice? How do you get through blood draws?

Progress, We Have Progress!

Big news in the PFMama household!

B had an allergist appointment this morning: she had a skin prick test (which my crazy daughter thinks is worse than a blood draw - go figure).

We were hoping for a smaller reaction than last year...and we got it!

She still reacted, but it was reduced enough for us to talk about food challenges (yes, even with a positive result - with a negative RAST, our allergist was ok to move forward now since her wheal size has reduced significantly over the years).

The doctor gave us the option to do it right away, but after weighing the pros and cons with him, we decided to wait until the fall to give her body a little while longer to gear up and (hopefully) grow out of the allergy.

So we're so excited! We're still avoiding just as diligently as we have been, but to see a possible end on the horizon is great.

I hope your Monday was just as good.

G

Oh Yeah, and about those RAST results....

Some of you might remember a little post I wrote about a month ago, detailing Bella's RAST test. And I never actually got back to you all on the results?

You KNEW there had to be a reason behind that, right?

Well, there was. We got her results. Oh boy, did we get them. Got a minute?

My sweet, sweet allergist phoned me with the news a month of Fridays ago, taking up two messages on my machine! I had come home from my parents' place that night, Bella asleep in my arms. I put her to bed, exhausted myself, anxious because it had been over a week since her blood draw with no word and a couple of messages in to their offices.

With Bella settled, I walked into our dining room and there was Mark with his excellent poker face. "Dr. B-- called", he said, "with Bella's results."

At this point, I was terrified. "And??" I stammered.

With his best 'serious' face, he said, "All negative. To all nuts. Bella's RAST results for her peanut allergy (all and other nuts for that matter) were NEGATIVE. And he wants to know if we want to do a food challenge."

At this point I burst into tears and fell into his arms. Uncontrollable sobs. I could NOT believe it. I was expecting a low level at best. But negative? Unbelievable.

I called my folks (my mom is anaph. to shellfish so she REALLY 'gets it'), while my wonderful husband opened a bottle of wine to celebrate, and we sobbed together. It really was like seeing the light at the end of the tunnel (without a train at the end - ha ha - love that expression). The feeling of relief that I had was incredible.

But I knew this wasn't the end of this.

The next Monday I made an appointment for Bella's food challenge. Yesterday was the big day. I actually bought peanut butter this week (it was terrifying!). We got a big bag of supplies ready for the 3+ hour appointment that awaited us. We were filled with hope and excitement.

Fast forward to this morning.

I was hoping that this post would be my goodbye to you all, my fond farewell, my 'see you later', 'adios', and 'adieu'. But I hate to break it to you all.

You're stuck with me for the time being.

Bella reacted to her skin test. Aw nuts!

Were we upset? Of course! Not crying upset, mind you. Just bummed out for Bella.

Was Bella? Not so much. She didn't seem to care at all that she wasn't trying out peanut butter that day (although she did ask last night "now when can I have a peanut butter and jelly sandwich?"), but was pretty psyched at the three (yes three!) lollipops the nurse gave her at the appointment.

But there is good news here. Really, I swear there is.

Bella has a NEGATIVE RAST result. And even though she reacted, her wheal size was smaller than last year's (which was also smaller than the previous year's). Her allergist is confident that she will outgrow this fairly soon (and he's an allergist that ALWAYS stays on the cautionary side of things - he is not a risk taker or nonchalant about allergies, suffering from them himself - so I was shocked by his comment). So we left the appointment feeling good, even though we didn't come out with the exact result we wanted.

I can't say I was totally shocked that she reacted though. I've read enough of the scientific literature to know that it was a possibility. I just hope, hope, hope that we make it through to the other side of this. A beginning, middle, and happy ending to our peanut allergy adventure would be awesome.

So are we changing anything? No. We're still being just as cautious as we always have. And in the new year we'll schedule another challenge. I hope she passes.

But even when she passes, you'll still be stuck with me. So many of you have proven to me that you are true friends - I wouldn't give you up that easily. I feel like I know so many of your kids already through your posts, emails, and IM's that I'll still be advocating for this, even if (and long after) Bella's peanut allergy resolves.

Have any of you gotten to the same point as us? I'd love to hear from you either in the comments or via direct email.

The One Where I Come Back and Talk About the Isolation I'm Going Through

Hi Everyone,

First of all, sorry for my absence. Between work, illness, and family, I've just been plain overwhelmed.

Have you guys ever been in one of those funks where you just feel like you're in the movie Groundhog Day? I've been feeling a lot like that lately. I feel like I've been sick forever (I'm at the tail end of it, but yes I am still congested!) and all I do is wake up, get Bella ready for school, go to work, pick up Bella, come home, cook dinner, do chores, run her bath, etc., etc. I don't know how I am going to get out of this funk, but it better be soon.

I'm going a little crazy people :)

My mother's day was ok (not bad, not great), but now Mark is getting a cold and we ALL know how men are with colds (sorry if I am being sexist here). I could cry thinking about all the 'taking care' of him I'm going to have to do. Sigh...

Oh wait, isn't this a peanut allergy blog? Oh yeah.

On the allergy front, two things for today:

1. This week marks the 11th Annual Food Allergy Awareness Week. I'm not suggesting you hold a seminar to educate everyone you know about food allergies, but how about talking to a fellow parent that has a child with a food allergy different than your child's? You can't expect other's to be super vigilant and aware of your child's allergies if you don't make the effort for their situation. Better yet, how about supporting FAAN and their efforts? Even though they are a big organization, they can always use our help.

2. No news about Bella's RAST results. You bet your life that I will be online pronto once I hear from her doctor. I have been trying visualization exercises to imagine what the doctor will say (and what I want him to say). What is it they say about wishful thinking? Maybe all this projecting will come true. Some of you are probably rolling your eyes, but I live in California and used to go to Grateful Dead shows, so I'm bound to get a little hippie-dippie on ya.

Well, off to bed, but I'll be back again soon with better content.

Oh, actually, here's something good: I made this yogurt cake over the weekend and it was spectacular. Sadly, it's not gluten, dairy, or egg free, but by the looks of it, this recipe would work well with substitutions. And if your kids like to cook with you, this is the perfect recipe - you use the empty yogurt tub to measure the rest of the ingredients. So yummy and easy!

Bella and the RAST: Part 1 (and how a pinwheel saved the day)

Bella had her RAST test this morning. To say it was anything less than stressful would be a lie.

We met with her incredible allergist and had a great chat about how Bella was doing (no reactions the whole year - yay!) and what to do next.

I knew he would want a RAST this year, he had said as much at last year's appointment. So, in the last few weeks, as best I could, I prepared Bella for the blood draw. She seemed ok with what would happen, and although she wasn't too pysched about it, the promises of a visit to her favorite toy store seemed to help her accept it.

So after our appointment (if you need an allergist, btw, email me - I can recommend a GREAT one on the SF Peninsula), we headed down to the lab, which is thankfully located in the same building. I walked through the door and the sign said:

ESTIMATED WAIT TIME: 60 MINUTES

And right about then, my heart sank. She wasn't going to hold on for 60 minutes (I mean, hello? she's 3). But the person checking us in asked "are you here for you, or for her?". Once I told her it was for Bella, she immediately told us to go through the waiting area and take a seat in the two chairs just beyond it (out of sight of everyone else).

And in about 5 minutes, we were in. Thank goodness for all women staff who obviously have kids. And shame on all those adults who gave us the stink eye for cutting in front of them. Whatever!

So we get in and sit down, and Bella, bless her heart is so happy and smiling (she had no CLUE what she was in for) and holding out her arm, telling them her name, and how old she is (THREE FIVE! she says, which means 3.5 or three and a half). So they get the rubber tourniquet around her arm, clean the area and then go in with the needle (mind you, she was in my lap/clutches, there was one phlebotemist doing the draw and another holding Bella's arm, and poor Mark standing there holding my purse).

And could they immediately find a vein? Oh, OF COURSE NOT! They had to dig a while - I mean, why make it easy? And by now, Bella is looking down and she literally says "I do not want that in my arm anymore!" and immediately starts weeping (and with tears, there's drool people) and then - BAM- it's waterworks for dear old mom, and we're both dripping tears, drool and snot everywhere (did I mention I am STILL sick?). And they fill a large vial with her blood, which Bella wouldn't stop looking at, crying the whole while. We must have been quite a sight.

But then, like that, it was over. They put a gauze on it, and wrapped her arm in that rubbery, sticky tape stuff that was orange with little smiley faces all over it.

And then I whipped out the treat. A HUGE lollipop (not one of those weenie dum dums - I called in the reinforcements :->). And the tears were gone. And she SMILED.

I think that getting your blood drawn is alot like labor. You totally forget the pain (well most of it) after it's over.

And as we walked out the door of the lab, guess what they gave her? A pinwheel! Is that the coolest? Whoever is in charge of that decision should be promoted - she LOVED it. She had her lollipop in one hand and the pinwheel in the other and she was just invincible as we walked to the car.

For the rest of the day, she was very proud of herself, telling the folks at my office what happened, and then my folks. And I think the memory of it all faded even more as the day progressed, because tonight she had to ask "Mama, which arm did they take blood from?"

And I wont tell you the story about how a certain 3 year old was waving her pinwheel out the window of the car only to have it drop in the middle of traffic, and how said mom had to drive all the way back to the lab where they were nice enough to give us another? Well, maybe I should because that's how a pinwheel really saved the day today. I think Bella would still be crying if they didn't give us another.

Thank God tomorrow is a new day.

We'll have results by the end of the week. I am trying to stay very positive. I hope, hope, hope that we get a low level, so we can hope for her outgrowing this allergy some day. I would do just about anything to see that day come. I am hoping that the good deeds I've done in my life will come back to me on this front.

And how are you?

Preparing for the RAST Test

For the last two years, Bella has had a Skin Prick Test (SPT) instead of a blood test to determine her food allergies.

The first year, she was allergic to peanuts, almonds, and walnuts.

Last year, she was allergic to just peanuts. Whew, no tree nut allergies! Of course, we haven't challenged the tree nuts with an oral challenge in the doctors office, so we're still avoiding them.

So that brings us to this year. Next month, Bella will go in for a RAST (also called the CAP-RAST) test. What exactly is that? I thought you'd never ask! Here's a brief statement from the NIH:

The RAST (Radioallergosorbent test) is a laboratory test performed on blood. It tests for the amount of specific IgE antibodies in the blood which are present if there is a "true" allergic reaction.

So basically (I'm not a doctor here), they take your blood and in a lab mix it with allergens to see if your blood reacts. Here's another link to an extensive overview of the RAST test.

Is it "better" than a Skin Prick Test? Not necessarily. As I understand it, both are good indicators of allergy, but for some folks the skin test isn't preferred due to eczema, medication interference, and the risk of exposure to the allergen. But our allergist, who's on the faculty at Stanford Medical School, wants to do it to see the levels in her blood as they react to Peanut. According to the AAAAI, the level of the CAP-RAST test may help predict future food allergy reactions to these foods. I've read lots of differing experiences with this, so I'm on the fence about how much faith to put in the results.

The RAST is very new territory for me, and I'm trying my hardest to understand it, and why it's necessary. But I feel that I should do it - that it's my responsibility as a parent to know just HOW allergic she is. Not that it will make a bit of difference in our diligence in avoiding nuts.

Did any of you decide not to do a RAST even if your doctor ordered one and just stay with a SPT? I'd love to hear from you either in the comments or via email.

And I must admit, I'm VERY nervous about her getting her blood drawn. I've been a blood donor for years, so needles don't bug me, but how do I explain to her that she's getting an 'owie' on purpose? I hope I don't break down in tears in the lab! I'm not sure I want to just surprise her with a blood draw without any notice - it seems a little harsh to me. On the other hand, I don't want her worrying about something that will only take a few minutes and will hopefully be fairly painless for her.

So how I am going to restrain my feisty (and strong) 3 year old? How can I help her in this situation? Bribing with a trip to ToysRUs will definitely happen, that's for sure. But do you all have any other ideas? I'd love to hear them.