Sunday, September 29, 2013

Allergy Friendly Snacks and Treats - Skeeter Snacks

Next up in our allergy-friendly snack bin?  Skeeter Snacks!  I went for the Golden Oatmeal, because I love a good oatmeal raisin cookie!

The Company: Skeeter Snacks makes allergy-friendly cookies, and has an adorable squirrel mascot to boot!

The Website:

The Allergy Factor: All Skeeter Snacks are Peanut and Tree Nut free, as are their facilities.  In their words - No Nuts.  Not Ever.

The Look: It looks pretty harmless.  I don't really see any raisins, which may not be a real bummer to most people, but I happen to really like raisins.

The Smell: It doesn't smell like much until you get up close, but when you do, it's pretty mouth-watering.

The Texture: I'll be honest - I'm kind of disappointed.  In my opinion, an oatmeal raisin cookie needs to be soft.  I just don't like crunchy oatmeal raisin cookies!  This one is completely hard and crunchy and a little bit dry. :-/

The Taste: They're not bad.  But I really only found one raisin in one cookie and two in the other - raisins add an important element to the taste of an oatmeal raisin cookie for me.  As for the cookie itself - it was pretty nondescript.  Not overly sweet.  I can definitely taste the cinnamon, especially in the aftertaste.

The Final Verdict: I don't think I'd seek these out again, knowing that there are other allergy-friendly options.  They aren't bad, but I can't really picture myself ever craving them.  I will say that they do a great job making their website kid-friendly with coloring pages and background info on Skeeter, the nut-allergic squirrel - so props there.  The price is right - so these would totally work if you're looking to send in a nut-free snack for schoolmates to share.  Just be aware that they are only nut-free - so they do contain allergens such as egg, milk, wheat, and others.  Keep your label-reading eyes peeled and enjoy with caution :)

Wednesday, September 25, 2013


You know what's fun?  Throwbacks to when Aidan was an IttyBit.   I promise you, I will never again pose him sprawling carelessly over a gourd.  I had no idea!

St. Patrick's Day!


Pumpkins are Scary!  No, really.  Scary.
Is there something on my head?

Monday, September 23, 2013

Patch Results 2013

Last week, we Patch Tested Aidan again, in an attempt to find some foods that are safe for trial.  It's been a year since we tried pork, and although that trial was pretty awful, we know we have to get back on the horse eventually.

Night 2 - I'm a little nervous that the tape won't last another day.  I'm sending a roll of tape to daycare with instructions to tape him like crazy if need be.

Night 3 - It's Removal Time!  Reinforcements not required - the tape held up!
The two days spent with patches on were pretty uneventful - not much to say, other than that we were anxious about the results.  Finally, Thursday arrived, and it was time to remove the patches.  It proved to be more difficult than last year due to the aforementioned hairy toddler back.  Sorry, Little Bear.

One thing was immediately clear when we got the patches off: He was itchy!

Sorry for the blurry picture.  His teeny little toddler fingers are just too cute for words.

I'll do you the distinct favor of cutting to the chase.  After we cleaned off the crusted-on food, it was pretty easy to see the reactions vs. non-reactions.  I wish I'd gotten out my camera instead of relying on my phone, but it was a hectic night.

The right side grid shows some possibilities!  I see some blank spaces!

The allergist confirmed positive reactions to Milk, Egg, Soy, Broccoli, Wheat, Beef, Chicken, Turkey, Ham, Sweet, Potato, White Potato, Corn, Oat, Rice, Peach, and Carrot.  There was a mild reaction to Pear and no reaction to Apple, Banana, or Strawberry.

A1 - Milk, Egg, Soy, Broccoli, Wheat.  A2 - Beef, Chicken, Turkey, Ham, Sweet Potato.  B1 - Potato, Corn, Oat, Rice, Apple.  B2 - Banana, Peach, Pear, Strawberry, Carrot
The plan at that point was to run blood IgE levels on Banana, Strawberry, Apple, and Pear (since the reaction was mild).  Assuming those showed no IgE allergy, we would be cleared to trial any of those.  My thought was to start with Banana, then Strawberry, then Apple.  I'd probably save Pear for last, just because there WAS a reaction, even though it was mild.

But then it got a little tricky, because by Sunday night, things looked worse.  Some reactions calmed down - but others flared up.  Pear looked more like a legit reaction, and Apple looked less "safe".

A1 - Milk, Egg, Soy, Broccoli, Wheat.  A2 - Beef, Chicken, Turkey, Ham, Sweet Potato.  B1 - Potato, Corn, Oat, Rice, Apple.  B2 - Banana, Peach, Pear, Strawberry, Carrot

A1 - Milk, Egg, Soy, Broccoli, Wheat.  A2 - Beef, Chicken, Turkey, Ham, Sweet Potato.  B1 - Potato, Corn, Oat, Rice, Apple.  B2 - Banana, Peach, Pear, Strawberry, Carrot

So this leaves me to wonder - trick of the light?  Trick of my eyes?  Too late for it to even matter?  The Pear doesn't bother me, since I'd pretty much ruled out trialing it anytime soon - but Apple is another story.  It was patch positive last year, and I'd really like to know whether or not we're ok to trial it this year.  I tried taking a few different pictures under different lighting - at this point I don't even know what I'm looking at anymore.  My eyes are tired, my brain is tired, and I hate food :(

Update: We spoke to Allergy and confirmed that even 3 days later, the results do matter.  We won't be trialing Pears or Apples.  But we are still left with Bananas and Strawberries.

We will wait to hear that the bloodwork is ok (we don't expect any problems there, but we would rather be cautious than not) and then move forward with a Banana Trial.  Wish us luck! 

Wednesday, September 18, 2013

Epinephrine Nose Spray?!!?

Stop The Presses!

I've just heard that there's an Intranasal form of Epinephrine expected to enter clinical trials in 2014.  There's (obviously) not much known yet, but a preliminary study showed that it was rapidly and readily absorbed and was comparable to intramuscular injections of Epinephrine!

How many lives might be saved!?

If caregivers didn't hesitate over administering an Epi Pen because of the needle - how many tragic losses would be prevented?

I am so, so excited to see where this goes!

Tuesday, September 17, 2013

2013 Patch Testing

Just a little over a year ago, we patch tested for the first time.  I don't think we really had much purpose at the time - CHOP suggested it, so we did it.  This time around, we're really specifically looking for something to trial.  Anything that is negative here will be followed up with an IgE blood test - and if that's negative too - we'll proceed to oral challenge, and then trial.

Back then, we tested for milk, eggs, wheat, rice, corn, oat, barley, potato, beef, chicken, ham, turkey, green beans, carrots, peaches, and apple.  The results weren't awesome.  He reacted positively to milk, egg, wheat, corn, barley, potato, beef, green bean, carrot, peach, apple, rice, and oat.  That left just chicken, ham, and turkey for trial.  We chose ham, and trialed it as pork.  We never talked much about it, but it didn't work out.  It really didn't work out.  He pooped blood for days.  It was so awful. 

This year, we tested for milk, eggs, soy, broccoli, wheat, potato, corn, oat, rice, apple, beef, chicken, turkey, ham, sweet potato, banana, peach, pear, strawberry, and carrot.  So we're taking away barley (I don't know why) and green beans (too close to his IgE allergy to peas).  And we're adding soy (I have no idea why - we would not trial this since he's IgE allergic, I believe it was added in error), broccoli, sweet potato, banana, pear, and strawberry.  Broccoli because it's uber healthy, and sweet potato, banana, pear, and strawberry because they are sweet and he'd probably like them.

A1 - Milk, Egg, Soy, Broccoli, Wheat.  A2 - Beef, Chicken, Turkey, Ham, Sweet Potato.  B1 - Potato, Corn, Oat, Rice, Apple.  B2 - Banana, Peach, Pear, Strawberry, Carrot

After the ultra-fun flare behavior we got last week from his skin prick testing, I can only imagine what's in store for us this week.  Here's to hoping we make it through the next 48 hours!

Night 1.  Love how the samples are oozing out.  This will smell great by Thursday night.

Thursday, September 12, 2013

Brand New Allergist & Skin Testing Fun

We've been without an Allergist for some time now, since Allergy & Asthma stopped taking our insurance and CPED is just so far and so inconvenient and sloooooooooow.

When we were at APFED this summer, we spoke to several families that use one particular allergist right in King of Prussia.  Looking back at old notes from our fabulous Nutritionist, it seems she has recommended her before, we just never pulled the trigger on making the switch.

As of this week - consider the trigger pulled.  Aidan has officially screamed it up in Dr. Beausoleil's office.

So far, I like her - she understands my fears and my hesitation - and at the same time, she recognizes that we do want and need to trial something.  So our goal is to do everything we can to find the safest options for trial.

Step 1: New round of Skin Testing

Step 2: Blood testing

Step 3: New round of Patch Testing

We kicked off Step 1 this week, and Aidan was none too pleased. But we got some results, so I consider it a success.

Skin testing tells us the IgE part of the picture.  The IgE allergies are the ones that keep mothers awake at night hoping they'll be able to administer that Epi Pen and praying they'll never have to.

At this point, Aidan's IgE allergies are Peanut, Tree Nut, Soy, Peas, Melons, Squash, and Zucchini.  We're told that all gourds should be avoided - so I guess we aren't going to be a pumpkin kind of family.  Who needs them, anyway?

Steps 2 and 3 are soon to follow.  Stay tuned :)

PS - Do my eyes deceive me?  When did my toddler get a hairy back!?

Allergy Friendly Snacks and Treats - Divvies

At this year's Kids With Food Allergies Expo, I had the chance to try a bunch of different allergy-friendly snacks and treats.  Aidan can't eat any of them now, but I think it's my motherly duty to try them all.  For later.  And for deliciousness.

The first sample that I tried was Divvies Sugar Cookies.

The Company: Divvies sells allergy friendly cookies, cupcakes, gourmet flavored popcorn, and chocolates.  There's even a cookbook!

The Website:

The Allergy Factor: The entire facility is free of peanuts, tree nuts, eggs, and dairy.  The Sugar Cookies I tried noted that they contained wheat and may contain soy.  "May Contain Soy" in this case means that there is possible cross-contamination with soy lecithin and/or highly refined soybean oil.  This makes it probably okay for most soy-allergic people, but please ask your doctor, not your blogger.

The Look: They look totally normal!  Just like you'd expect a sugar cookie to look.  There's even a dusting of sugar granules.  I caught myself thinking that it looked just like a real cookie.  Duh.  It is a real cookie.  A really safe one.
The Smell: It smelled great.  Sweet and vanilla-y.  This was exciting - a lot of allergy-friendly and specialty prepackaged foods don't smell like anything, and I find this really disappointing.

The Texture: This is probably the second most important part to me.  A cookie needs the right texture.  Too soft, and you've got mush.  Too hard, and you've got dessicated charcoal.  Only Chips Ahoy can get away with serving me a jawbreaker and keep me coming back for more.  Divvies really got it right.  Just the right amount of crunch, while still keeping enough of a moist, chewy cookie texture.  Not too hard or dry.  I think I'm in love.

The Taste: Drumroll Please?  They're delicious!  Seriously, they're really good.  And I've heard the other flavors are even better.  They really do taste like a sugar cookie - maybe a little bit less sweet than most prepackaged sugar cookies, but still very, very good.  No weird aftertaste either, which I'm always half-expecting from "specialty" foods. 

The Final Verdict: I do not have peanut, egg, or dairy allergies - and I'd definitely still choose these over other cookies.  In fact, it's a new goal of mine to try EVERYTHING Divvies has to offer!  Those cupcakes are calling my name :)

Sunday, September 8, 2013

Update: GI & Next(er) Steps

After our visit with Mimi, we were really on a roll, and got in to see GI right away. 

I wonder if it would be rude to actually bring a stopwatch and time our visits with Dr. Liacouras.  I've never seen a doctor enter or exit a room so quickly.  The thing is though, I can't complain.  The man knows what he's doing, he's got a plan (of some sort) in mind, he just doesn't really have the time to pat you on the back and reassure you that you really have done everything that a good mother should do. 

I didn't bring a stopwatch this time, but my very scientific estimate is that we saw him for roughly seven minutes.  Two of those minutes were spent with him actually making physical contact with my child, which is always a huge win.

He thinks we should probably discontinue the lemonade, but he understands what a blow that would be to Quality of Life.  He is okay with keeping it, but points out that it's likely the cause of Aidan's current requirement for daily miralax.  Not because of an allergy or an EGE reaction - probably something more like exacerbation of IBS.  Sorry, kid.  Only, not that sorry, because he's not the one changing and washing the diapers.  Sorry, me.

Anyway, we're all agreeing to disagree about the lemonade, or something like that.  Agreeing that we probably should take it away and that we probably won't do that.  Because hey, I'm realistic.  If I take it away, my baby will hate me, and also he'll never drink again, and his urologist will hunt me down and murder me.  Is it really worth it?  (Note: Maybe I'm exaggerating a teeny tiny bit.)

He's supportive of our move to see a new non-CHOP (ex-CHOP) allergist this week, and supportive of our decision to at least try to find a food to trial.  Plan is to find a food, try a trial, and if all goes well, scope in 3-4 months.  My hopes aren't all that high - we've never made it that far in a trial - but still.  Trying is evidently the thing you're supposed to do.

That's probably another post for another time - Everyone else I talk to is crazy-over-the-moon for food trials.  Let's get this kid eating as fast as we can and ditch this tube!  But I don't feel that.  Not even an ounce of it.  Food trials are "tear you from a dead sleep in a cold sweat" scary for me.  Will tomorrow be the day he anaphylaxes?  Does he really have FPIES?  Will a few more bites ultimately send him into shock?  I recognize that these aren't normal thoughts - but I still have them.  I'm hoping next week's visit with Allergy at least helps quiet some fears.  I hope we can find something safe.  I hope.

Thursday, September 5, 2013

Update: Nutritionist & Next Steps

We had a great visit with CHOP Nutrition this week.  Nutrition visits are always great - I often feel like our Nutritionist is the only at CHOP who actually listens to us, so those visits usually consist of my brain dumping all of my problems on Mimi while Aidan screams his heart out, because he hates that place.

As usual, I digress.

This week's visit was actually really great.  Last month, we all agreed to increase his feeds and see if that made him put on any weight.  This week, we found out that he gained almost an entire pound!  This is huge news!  He's up to 25lb 5oz (4.3%) and 33 1/4" tall (1.4%).  So he's still not huge - but he's growing.  We'll take it!

Mimi also worked her magic to get CHOP homecare to start delivering our formula - which NO ONE has done for us over the past two months that we've been asking for it.  So I'm pretty sure she's basically a magician.

Next steps:

Go see GI to discuss their thoughts on next steps.  When do we scope again?  Do we keep the lemonade even though he requires daily Miralax in order to be able to drink it?

Go see the new Allergist to discuss what might be a safe food to trial. This one scares the daylights out of me, and I have no idea what we're going to try. 

In prep for seeing the new allergist, I got all of Aidan's allergy records from both allergists we've seen (Allergy & Asthma and CHOP's EE Clinic).  Nothing special in the A&A file - they diagnosed him with soy enterocolitis when he was about 8 months old, and told us to reintroduce apples and bananas.  All of their skin testing was negative.  When he was 15m old, we did environmental testing, and he tested positive to grass, trees, weeds, and dust mites.  He'd also recently recovered from RSV, and had uncontrolled asthma symptoms.  He was started on daily pulmicort and zyrtec.

The CHOP file was a little more interesting.  He was there at 12m.  He was diagnosed at that time with IgE allergies to soy, peanut, and peas.  They also noted that he could potentially have FPIES (specifically in reference to milk and rice.  I don't know why those were singled out.)  This is interesting, since no one had ever uttered the word "FPIES" to us.  And I guess it doesn't really matter since he doesn't eat anything - so we don't have to worry about an FPIES reaction.  But it might have been nice to know we should be looking out for them?  Anyway, at 19m he was Patch Tested, and positive to eggs, milk, wheat, corn, barley, potato, beef, green beans, and peaches.  He was "equivocal" to rice, apples, and oats - however he has failed rice and apples based on symptoms in the past.  Chicken, pork, and turkey were negative.  Carrots were considered negative although I clearly saw a hive, so we agreed to disagree on that one.  They recommended starting food trials.  And that was our last visit.

So long story short, I have no idea what we'll trial but it's probably a good idea to get the ball rolling with this new allergist.

It feels good to have a plan.  Or a plan to make a plan.  Or at least someone who listens and cares about my kid.

Light the Night

I'm really excited to say that Aidan and I will be walking with dozens of others from my company in the Leukemia & Lymphoma Society's Light the Night walk this year.  We are walking in honor of my coworker's son, Matt, who was diagnosed last year with Acute Myeloid Leukemia.  Matt has spent too many months in CHOP receiving four rounds of intense inpatient Chemotherapy, all leading up to a stem cell transplant this March.  He's an amazing kid with an amazing family around him, and we're proud to walk with him :)

Our goal is to raise $100 for the Leukemia & Lymphoma Society.  Please consider donating - every dollar really does help a patient live a better, longer life.

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