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!

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!?

Thoughts on Epinephrine

It's every parent's nightmare - one that feels all too real for those of us whose children are dealing with food allergies.

Natalie Giorgi.  A 13 year old girl, camping with her family, took a bite (one bite) of something that contained peanuts.  She immediately spit it out and told her mother what had happened.  Her mother administered Benadryl.  Twenty minutes passed before she began showing symptoms.  She vomited once.  She became short of breath.  Her father - a doctor - administered an EpiPen and supplemental oxygen.  He would administer two more EpiPens.  She didn't swallow the food. She wasn't alone.  She wasn't ignoring her symptoms.  She was given the correct life-saving medication.  But she died anyway.

So what happened???  Where did everything go so wrong?

I think this article (Click here for The Article) explains it very well.  So many of our allergy action plans list EpiPens as a second line of defense.  I'll admit - our own plan from our own doctor says that he should be treated with Benadryl first if the symptoms seem mild.  But as Natalie's family learned, mild (or no!) symptoms can swiftly progress to severe symptoms, and even death.

What I like about this article is the description of anaphylaxis.  "Natalie did not develop anaphylactic shock 20 minutes after her eating a snack, she was in that process from the first bite."  So maybe we need to really rethink what anaphylaxis looks like.  Does it look like vomiting, swelling, shortness of breath, or hives?  Yes, sometimes.  But it also looks like an itchy mouth, just a few hives, mild nausea, or - at first - nothing at all.

For most of us, it's a paradigm shift, to be sure.  But if we are to do everything we can to keep our kids safe and alive, shouldn't we really be administering EpiPens at even the first indication of a suspected ingestion or contact?  Why are we so afraid to give Epinephrine?  Is it the needle?  If EpiPens were actually Epi-Syrup, and we could administer it by mouth with a syringe - how much more often would we properly treat allergic reactions?

I've been there - I will freely admit (with no small amount of shame) that I'm guilty of treating reactions with Benadryl and inhalers instead of Epinephrine.  I could have done exactly what Natalie's family did.  I can't judge or criticize their decisions at all.  But this horrifying tragedy has to change something - You'd better believe I'll be amending our Allergy Action Plan.  If you don't have one - please make one.  There are really wonderful templates out there - we use one from Food Allergy Research & Education - click here to check it out.

In the meantime, perhaps you'll understand why I've done this to my son's backpack:

(And no, he does not yet self-carry, so it's a little bit misleading that his button says "EpiPen inside" - however I think it's at least a good indicator that EpiPens should be NEARBY and may be needed in the event of an emergency.  They didn't have buttons that read "EpiPen inside the bag of an older/more responsible adult")

What Nannies Need to Know About Allergies

A couple of months ago, another blogger reached out to me to share an article with me that seemed pretty relevant.  It's called What Nannies Need to Know About Allergies, and it really did get me thinking.  While the article is fairly high-level, I appreciate the attention to the subject matter.  The fact is, it's really important to think about allergies when you're caring for someone else's child!  And I'll admit, I never really thought much about it prior to having my own child. 



So what does a parent with a Nanny have to think about these days?  Obviously, the Nanny should be informed of the allergies that the child has, and should be trained in the proper use of an Epi Pen.  The article I mentioned above notes that families often keep "allergy foods" out of their houses - but honestly, I find this often not to be the case.  Not all family members have the same restrictions, and in some cases, an allergic child may have so many restrictions that it's not feasible to clear the home of all unsafe foods. 

In my opinion, the most important thing that a Nanny or other caregiver should be taught is how to recognize a reaction.  Because it's not just a child who falls to the floor lifelessly.  It's also a child that's starting to cough, whose nose or eyes are starting to run, whose face is becoming flushed, whose skin is becoming rashy, or whose mouth feels "funny."  It's a child whose tummy doesn't feel good, whose ears are flushed, or whose scalp is itchy.  These (and countless other) subtle signs are so often missed - and these are the times when a quick administration of Benedryl can head off a worse reaction.  If nothing else, I hope my Nanny knows this and tells the other Nannies she knows.

So how about you?  What do you tell your allergic child's caregivers? 

Huevos y Flu Shots

Mama Bear's Message to Dr. Allergist: Hello, Dr. Allergist's Office.  I'd like to leave a message for Dr. Allergist.  My son has recently patch tested positive - very positive - for an egg allergy and I am now unsure of whether or not to allow him to receive a flu shot.  Can Dr. Allergist please give me a call so we can discuss?

Dr. Allergist's Nurse's Response via voicemail: I spoke with Dr. Allergist and he feels that it's okay for Aidan to receive a flu shot as long as he does not have anaphylaxis to egg - meaning any reaction when he ingests it.  So he said it's fine to get the flu shot, and it doesn't have to be done at our office.

Mama Bear's message back to Dr. Allergist's nurse: I'm calling in response to a voicemail I just received.  The message I left stated that we recently learned via Patch Testing that my son IS allergic to eggs.  I do not know what happens when he eats them, as he has not had them or any other food in nearly a year.  I'm sure you can understand that with a positive test result for egg, I am certainly not going to be feeding him eggs to find out for sure what his reaction will be.  I just need to know how to proceed regarding this flu shot.  Can you please have Dr. Allergist give me a call to discuss this?

Dr. Allergist's Nurse's response via voicemail: Dr. Allergist would like you to come in for a flu shot.  We can test him for egg at that time.

My brain?  Fried.  Please enlighten me.  Do some doctors just not use Patch?  Is the Patch reaction not considered a "real" reaction?  We were told that we needed to carry an Epi for ALL things that he reacted to, via Patch or SPT.  Dr. Allergist has notoriously useless nurses - maybe he's just not getting the message I'm attempting to send?

Patch Outcomes

So, I guess I didn't write this, but as I composed my thoughts on Patch Weekend, I was feeling optimistic.  Really optimistic.  Aidan was understandably annoyed at all the crap we taped to him, but he was acting okay and things seemed to be going well.  By Sunday, I actually convinced myself that we'd be passing things.  Okay, laugh all you want.  I (delusionally) thought he'd pass everything.  We'd have a plethora of things okayed for food trials.  Unicorns would be sneezing glitter onto rainbows.  The whole nine yards.

It didn't quite happen that way.

So here are the patches before we removed them.  Nothing sneaking out from under the discs.  No angry redness.  So stop your laughing, because this looked pretty hope-inspiring!

For the record, we tested milk, eggs, wheat, rice, corn, oat, barley, potato, beef, chicken, ham, turkey, green beans, carrots, peaches, and apples.

When I removed the patches, I immediately saw lots of redness (thanks to the adhesive), some stuck-on food (it smelled divine, as I'm sure you can imagine), and one welt.  One, we can handle.  I could see the outlines of the discs used to hold on the foods, but nothing that looked reaction-y other than the one.  It was egg, and it wasn't surprising.  We know from experience that Aidan loves eggs but can't eat them without immediate and severe vomiting.  We've considered them a probable allergen since he was 9 months old.  We even take egg-allergic precautions like having his flu shot done by the allergist instead of the Ped.

No biggie. 

We gave Aidan about half an hour to play while the re-drawn sharpie dried and then checked him out again.  By this time, more welts were popping up.  It's difficult to photograph an itchy, squirmy baby - but I'm a blogger so obviously I had to try.

I never did get fantastic pictures of some of the reactions. Rice and Oat were weaker reactions that were obvious in person but didn't photograph well.  Apple and Carrot look more like discolorations in the pictures than the welts they were in person. 

I actually worried that if we bathed him as instructed, the reactions might go away and no one would believe they'd ever been there.  Ha.  (For what it's worth, it's been over a week now, and egg and wheat are STILL plainly visible).

Monday saw us back to CHOP's Market Street annex to have the patches read.  Again, the outcome didn't photograph all that wonderfully, but the end results were fairly obvious in person.  Weak positives on rice, oats, apples, and carrots.  Positives on milk, wheat, corn, barley, potato, beef, green bean, and peach.  Strong positive on egg.  No reaction to chicken, ham, or turkey!!!

I wish this picture was clearer.  Trust me though.

So those are the results.  Lots of new allergies.  Reminder to carry epi-pens everywhere (because I so need to be reminded, ha!).  And it's time to start thinking about what and when we'll trial.

One final thought.  We've shared these results with a few people and realized that they might be a little confusing.  We've had a lot of reactions that sounded like "That's wonderful! Now he has three foods!"

To be clear - he doesn't.  He has zero foods.  We have three foods that have been approved for trial.  Each trial will happen on its own, over the course of 2-3 months, with a scope and biopsy in between to check for eosinophil counts in his esophagus and colon.  I'm not trying to be a downer, I'm just realistic.  Having three foods would (Will!) be wonderful, but we aren't there yet and don't know when we'll get there.  There are a number of things that go into the decision regarding when to trial - this deserves a post of its own - but please believe that we are just as anxious as you are to get him "safe" foods - safely.

Big huge thanks and hugs to Miss Nikki for coming to CHOP with us, and to Baby Aidan (Our Medical Me doll!) for keeping Aidan brave.  I look forward to sharing some pictures of Baby Aidan's first day with Big Boy Aidan soon!

Fun Finds - American Girl???

I'll confess, this isn't my fun find.  American Girl is rarely on my shopping list.  Earlier this week, I saw this posted on FEAST's facebook page and just **had** to share.

It's allergy awareness at its finest (and funnest, too!)

My American Girl® dolls can enjoy a make-believe lunch that's allergy-safe:

• A pretend berry smoothie, container of vegetables, and two sandwich skewers
• A medical bracelet and allergy stickers to keep her safe while she snacks
• A faux allergy shot, just in case
• A fabric lunch bag to hold it all

Okay, so obviously My American Girl isn't wheat-allergic.  And milk's not a problem.  And I bet that smoothie doesn't come with a reliable top-8 warning on the label.  And shouldn't she be carrying a second Epi-Pen?  But I really love that food allergies are becoming so mainstream.  I genuinely believe that play is a fantastic way to make confusing things less scary for children.

Do your little girls play with My American Girl dolls?  Will you consider buying this playset for her?

Diagnosis: Food Allergies

We began to suspect food allergies when Aidan was just four weeks old.  He was very refluxy and covered in eczema all the time.  As he got older, we realized he was sensitive to certain things in my diet (soy was the big culprit that we knew of) and would react after nursing when I had eaten problem foods.  We were finally referred to Dr. Fogg to be evaluated for allergies.

Aidan liked him immediately.  Who wouldn't?  His office was full of fun toys like tongue depressors, giant q-tips, tissues, and the awe-inspiring stethoscope.

We spoke at length with Dr. Fogg about his symptoms, his reactions, and the foods that I was concerned about.  We decided to test for milk, soy, a few grains, a few fruits, and something else (I'm a terrible mom, I absolutely cannot remember what.)

The tests weren't overwhelmingly positive, although he DID have a delayed reaction to something on his grain grid.  It didn't show up until hours later, but it took two doses of benadryl and copious amounts of hydrocortisone to get rid of that sucker.  I suspect barley, but I digress...  We were sent home with "no allergies" and a mandate to "add everything back in!"

It didn't feel right to me, but what do I know?  Milk (cheese) went back into his diet.  Soy (traces) went back in.  Bananas went back in.  And he was a mess.  Hives, eczema, vomiting, exacerbated reflux.  Clearly, this wasn't working out.



This merited a call to the CPED clinic downtown.  They agreed to have one of their allergists evaluate him. 

 This time, he was immediately very positive for peanuts, soy, and peas.  We received the obligatory epi pen training, and we were on our way - the proud new owners of some bona-fide food allergies.


We are very, very careful with these foods, but we still feel that we don't know the whole story.  We'll do more testing (and different testing) as we prepare to reintroduce food into his diet.  Not soon, just eventually.

Stay tuned...  This story's a work in progress.

I like your pretty bracelet...

A sweet little girl in the CHOP waiting room was very impressed by Aidan’s bling.  It’s so shiny, mommy!  It’s just like your pretty bracelet!  Can I get one too?

I think kids are born to admire.  What a cute, teeny baby!  What a shiny bracelet!   What a cool special lunchtime chair!  Little kids seem to just understand to look for what’s the same, rather than what’s different.  Aidan’s just another kid – he’s silly, he’s loud, he likes to run, he doesn’t like having his nose wiped.  He’s exactly like them, except for when he’s a little different.  Kids don’t pity him, or worry that they’re going to say the “wrong” thing. They look, they accept, and they play.

I wish adults saw him that way.   They don’t.  Some days, even I don’t.  It’s a struggle.  It’s so ingrained in us to point out what’s different and to internalize it.  I can’t imagine how awful life would be if I couldn’t eat pizza.  It would be – for me.  I love pizza.  But for him?  Not so awful.  He doesn’t love pizza.  He loves laughing, and he loves running, and he loves playing – and none of those things are going away. 

When I look at that arm, I see a little boy who needs more attention and more care.  But that little girl saw shiny and pretty.  And do you know what Aidan sees when he looks down?  An arm.

For seriousness's sake, Aidan does wear MedicAlert's Child's Steel Bracelet.  It's wonderful for peace of mind - a simple call to MedicAlert will tell first responders of his allergies, his condition, and his emergency contacts.

For space's sake (he's tiny, and so is his bracelet) we chose to have the following engraved, along with his MedicAlert ID number.  These are the most emergent of his issues - the EGIDs can be learned of later - but these are the thing that will alter the way care is provided in an emergency situation.

FOOD
INDUCED
ANAPHYLAXIS
REACTIVE AIRWAY
DISEASE.

They are so very affordable - we highly recommend MedicAlert.  They'll help you determine what to engrave and how to size the bracelet.  And they're oh so stylish!

What's wrong with him, anyway?

Here's the zillion dollar question.  What's wrong with him?  


The short version:
Aidan has an eosinophilic gastrointestinal disorder (EGID) that involves his esophagus (Eosinophilic Esophagitis - abbreviated EE or EoE) and his colon (Eosinophilic Colitis - EC).  He also has environmental allergies, potentially life-threatening food allergies and Gastroesophageal reflux disease (GERD).  He also has Reactive Airway Disease.

Um...  What?
I know.  It's a lot.  It's a lot to read, and don't even get me started on living with it.   But we do (and "we" is a very broad word.  "We" are a team that includes Mommy and Daddy, friends, family, teachers, doctors, nutritionists, pharmacists, and online strangers whose kids have these problems too.) and we do it well.  See, I mentioned the EoE, the EC, the food allergies, the reactive airway, and the GERD.  But what I haven't mentioned yet is vastly more important.

Aidan has all of the issues above, but he also has a severely infectious laugh, an independent streak a mile wide, and a bigger smile than I've ever seen on a 1 year old, bar none.

Mommy wasn't kidding about that smile...

Let's take it one step at a time...


Food Allergies
Nowadays, most of us know someone with food allergies.  "Food allergies" can mean so many things.  Some reactions are scarier than others, but it's really important to know that a past reaction isn't a great indicator of a future one.  Yesterday's soy-related eczema flare-up could be tomorrow's anaphylaxis.  It's so, so important to be vigilant and careful, especially when dealing with small children who can't articulate how they feel.

In Aidan's case, the line between his food allergies and his EGIDs is a really hazy one.  We do, however, know that he is definitely allergic to peanuts, peas, and soy.  They are severe allergies with potentially life-threatening consequences.  We carry epi-pens for him, and are thrilled beyond thrilled to show and teach others about how to use them.  We carry a trainer pen everywhere with us and have given one to his daycare so that they can all practice using it.

There is also a list of "suspected" allergies that haven't shown positive on his last round of testing, either because we didn't test for it, it was a false negative, or he truly isn't allergic.  Those things include eggs, milk, and red dye (hello, random).  Further testing in the future should help us get to the bottom of these foods (but that's another post, for another time). 

Contact with these allergenic foods (even on his skin) can cause hives, swelling, red/itchy/watery eyes, itchy/runny/stuffy nose, itchy/swollen mouth, trouble speaking, trouble breathing, shortness of breath, rapid breathing, coughing, wheezing, vomiting, abdominal pain, nausea, diarrhea, agitation, weak pulse, anxiety, or loss of consciousness.  Obviously some of those look a little scarier than others (trouble breathing?  loss of consciousness?  Eek!) but for someone young and unable to advocate for himself, it can be hard to tell when he's really in trouble.  What looks like coughing can actually be a child struggling to breathe.  A child making "funny noises" may in fact be wheezing.  And how does a 1 year old indicate that his tongue is swelling or his mouth is itchy?

It's serious business, food allergies.  Not for the faint of heart.  And the very scariest thing?  Many people don't even know they have a food allergy until after a serious reaction occurs.

So if you hang out with us, be ready to be shown the business end of an epi-pen.  Be ready to use it.  If you have questions, ask them.  If you still don't understand, ask again!  This little guy counts on all of us to keep him safe.


GERD
This one's a lot more straightforward.  I actually know few babies that don't have some reflux in their first year of life.  Aidan's no exception here, and continues to be treated with a high dose of a Proton Pump Inhibitor (Prilosec) twice a day.  His medicine has to be compounded for him, we really wish our insurance would pay for this, but what can you do?  Any parent dealing with feeding issues would agree that whatever keeps food in the tummy is worth its weight in gold.


EGIDs
Ah, here we are.  This is the reason you came, I know.  The ever-mysterious Eosinophilic Disorders.  There will be many, many posts in the future explaining more about this, so I'll go with a short version for now.

Inside everyone's body are white blood cells called eosinophils.  They're super important because they help fight off nasty infections (including parasites).

In Aidan's body, the eosinophils are a bit confused.  They hang out in his esophagus and colon whenever he eats because they think food is a parasite.  They do what any good parasite-fighter would do - attack!  Unfortunately, there aren't any parasites around(I promise, we checked), and so they attack the food instead (and it's awfully hard to grow when everything you eat gets attacked before you can digest it!).  Once the food is gone, they attack the inside of his body (and this hurts, a lot.).

What this means for Aidan on a daily basis is that he can't eat.  Not that he can't eat some things.  He can't eat anything.  You know how helpful it is to distract your kid with cheerios, or bribe him with a cookie?  I don't. (But I hear it's grand.)

It's a full time job keeping food away from a toddler.  Just ask his teachers! 


Reactive Airway Disease
Reactive Airway is a way of describing how Aidan's body reacts at certain times.  It might or might not indicate asthma later on.  At the moment, it indicates that Aidan frequently coughs, wheezes, and struggles to catch his breath, especially when he's sick.  He is treated at home and at school with albuterol in a nebulizer, and he's surprisingly good about taking the treatment.

At this point, Aidan's too young for reliable diagnosis of asthma.  At his age, we call his collection of symptoms "Reactive Airway" and keep an eye on it.



So that's what's "wrong" with him.  It's my sincere hope that those of you who know him have just as much to say about what's "right" with him too.  He's a fantastic kid, he just needs a little bit of extra care to keep him safe and healthy.

There will be lots more to say about all of this in future posts, including how we got here and where we're going next, but this seemed a reasonable place to start.  Feel free to ask questions.  Thanks for listening.  Thanks for caring.