Aidan… With Eos does Halloween

As December draws to a close, I realize that I haven’t really had a chance to reflect on Halloween.  So, how does a food-free, pumpkin-allergic boy with high anxiety and a hatred of costumes do Halloween?  Very Carefully.

It takes some planning, to be sure. 

Hurdle #1 – The costume.  The boy hates things that touch his head, face, or neck.  Also, he’s not thrilled with pants that don’t look like his regular everyday pants, shirts that do and/or don’t have sleeves, jackets, hats, or nudity.  He hates shoes that look different than his normal shoes, boots, sandals, socks with “things” in them, and being barefoot.  So I can tell you quite honestly that if getting dressed every day is a war, then a Halloween Costume is a Nuclear Bomb.

By this age (almost four), most kids have some idea of what they’d like to be.  The idea might change daily (hourly?), but there are ideas out there.  Ninja Turtle.  Queen Elsa.  Spider Man.  Sharknado.  We don’t really have that here.  Though I don’t know what every child with Autism is like, my child with Autism is too literal to really “get it” – he knows that he isn’t a Ninja Turtle, so how absurd to dress up like one.

Once we get through that, with assurances upon assurances that we’re just pretending, isn’t that silly!?, we still need to figure out who/what we’re pretending to be.  This year, it really just fell into our laps.  After a particularly positive visit with his GI, Aidan looked at me and said “Do you think I’m Doctor Liacouras?”  I can make that happen, kid!  Traditional white lab coat with a stethoscope wouldn’t really do – Dr. L is a Surgeon and Surgeons wear Scrubs – a quick query to my 200 closest friends got us a couple of pairs of embroidered scrubs, ready for Halloween happiness.  Since our little doctor-to-be has no fewer than five doctor kits of his own, accessories were already covered.  We lucked out here – scrubs are as close as humanly possible to pajamas, and it only took Aidan a couple of trial runs to get used to wearing them.  By Halloween, putting them on was a privilege! He now has scrub options, and can give you a scrub fashion show.

Hurdle #2 – The décor.  Okay, so pumpkins.  We don’t do pumpkins.  The boy is severely allergic, think anaphylaxis.  Since I take death pretty seriously, we don’t play around, and there were no pumpkins to be found in our household.  No worries though – we had plenty of faux pumpkin love, tubie-style.

Hurdle #3 – The treats.  This is the big bad.  And the problem is two-fold – both at school and out in the community.  I’ll tackle school first.

As Halloween approached, we got a note home from school inviting us to come visit for Aidan’s Halloween parade, and then stay to help celebrate by decorating cookies.  Really?  I had to say something – honestly, WHY do three-year-olds need cookies on Halloween?  Is a Halloween Craft really just too disappointing?  I responded with an email:

I got the note about next week's Halloween Parade and cookie decorating activity.  Obviously, Aidan can't participate in cookie decorating, but I would like to help find an alternative activity that he can do so that he won't feel excluded.  It's very important to us that Aidan be able to participate in these activities with his peers as often as possible.

In the future, please let me know if there's anything I can do to help make celebrations more inclusive by taking the focus away from food.  I would be happy to help provide crafts or activities for his classmates that would allow everyone to safely enjoy the celebration together.

I don’t know what I’d hoped to accomplish – I just needed them to know that whether they knew it or not, they were excluding Aidan by choosing something that literally every child but him could do, and it’s not the only way to celebrate.  To call their response disappointing is an understatement.

Thank you for your email. We do have crafts for the children as well. Please understand that when planning Halloween we tend to keep activities very simple as very few families choose to stay after the parade.  I do however understand your concern and would never exclude Aidan from the class.

Have a nice weekend.

It’s hurtful, I think, because I’ve told them that they’re excluding him and their only response is a halfhearted “Oh we would never…”  I did the best I could, because that the end of the day, we are his parents and it's our job to fight these battles.  I sent him foam shapes that might look like “cookies” along with glitter glue “frosting” and foam sticker “sprinkles.”  I wasn’t at the party, but my husband tells me that he had a good time.

I also sent in non-food treats for all of his peers, because that’s how we roll.  His classmates’ parents either know he has severe allergies, or think we’re really pointlessly passionate about not eating ever.  Either way, I think they went over well.

I’m sure this is just the first of many run-ins (Actually, not the first, just the most recent.) with school over inclusion.  It just breaks my heart to know that they don’t care.  “Easy” won out over “Right”, and there’s been a noticeable difference in the way his school has treated us since this email exchange. 

But back to the positive stuff – Treats Out and About.

Our Halloween tradition is to Trick or Treat with Aidan’s best friend, Teddy.  This year was no exception, so Dr. Aidan and Engineer Teddy went out on the town and collected truly insane amounts of candy from every “Halloween House” in Teddy’s neighborhood.  Having prepared extensively (thank you, social stories, TV shows, and visual schedules!), Aidan was SUPER successful this year, and even said “Trick or Treat” at almost every house!  Well, halfway through, he forgot the phrase “Trick or Treat” and subbed in “Halloween!” – But, you know, samesies!  

I prepared ahead by making Aidan-safe just-sugar lollipops (Recipe here), and snuck one in his bag of loot.  At the end of the night, he enjoyed a lollipop while I went through his stash and picked out what he could keep.  We actually saw a few Teal Pumpkin houses, where non-food treats were given out – how awesome!  Aidan wound up with quite a few things between his school friends and Teal Pumpkin houses, and of course, Teddy’s wonderful Nana.  

The next day, we took Aidan’s candy bucket to the toy store, where I set us all up for success by placing one toy that I knew he’d love in eyesight, and offered him the opportunity to buy it with his candy bucket.  He was so happy and very proudly handed that candy over.  He never once asked for the candy again.  Spur of the moment decision, but I think it will be a new tradition, because it went over really well!

So that was our Halloween in a nutshell.  So much success.  I hope to be able to work more closely with his school in the future to make their celebrations less exclusionary, at Halloween and all year long.

Just Sugar Lollipops

Recipe Information:
Number of Servings: 18
Recipe Borrowed from: Kids with Food Allergies

Tools Needed:
Candy Thermometer
Lollipop Molds (I use silicone to avoid the need for cooking spray)
Lollipop sticks (My grocery store sells them, but you can also find them at any craft store with a candy aisle)
Gravy boat (optional, but very helpful)
Non-Stick Aluminum Foil

Ingredients
1 Cup granulated (white) sugar
2/3 Cup Golden Syrup
1/4 Cup + 2 tbsp water

Instructions:
- Add all ingredients to saucepan, with candy thermometer attached.  Bring to a boil over high heat and do not stir. 
- As mixture heats, prepare molds by adding lollipop sticks.
- When mixture reaches 300°F (Hard Crack), quickly remove from heat.  If available, pour carefully into gravy boat.
- Quickly pour mixture into molds.
- Allow to cool (20-30 minutes).
- Remove Lollipops from molds and wrap in nonstick aluminum foil.

Notes:
- I would love to link you over to a fabulous candy thermometer, but truthfully, I'm still searching.  If you find a wonderful one, please leave me a comment and let me know.
- Lollipop molds were almost the death of me.  I tried hand-poured lollipops, but they were very thin and flat, and once my son's tongue touches the stick, he's no longer interested in the lollipop.  In my head, I envisioned churning out bags and bags of homemade dum dum pops.  Reality was not quite so fancy.  I tried some plastic molds from Sur La Table (like these) but I was losing half of my output to breakage because I can't use any nonstick spray.  Freezing the lollipops before attempting to remove them from the molds helped only slightly.  Ultimately, many hours of searching eBay and entrusting a few dollars to a Chinese seller got me some smiley face silicone lollipop molds. 
- I find Golden Syrup at my grocery store, but you can get it on Amazon
- I like to use a gravy boat because it's much easier to pour into molds from that than a 300° - but it's totally a matter of preference.  Just note that even though you remove the pan from the heat, it will continue to rise in temperature (especially if you leave it in the saucepan), so pour into molds quickly!
- This is a half-recipe.  To make the full recipe, you will need the following:
          1 Cup granulated (white) sugar
          2/3 Cup Golden Syrup
          1/4 Cup + 2 tbsp water



Aidan loves these lollipops.  They are safe for him, because they are literally just sugar and water. While his dentist may not love the idea as much as we do, I really enjoy that I can give him something that makes him feel like a regular kid.

Bananas - Day 1 & CHOP ER

Banana Day kicked off with the purchase of a bunch of bananas.  It should have been pretty simple - enter store, obtain bananas.  But I was nervous!  How do parents of eaters choose what to buy!?  Am I supposed to buy organic??  Does it matter?  (FWIW, I did, and not because I have any particularly strong feelings one way or the other - but rather because I figured it made sense to introduce as few factors as possible into the equation.  Also, when you're only buying one food, buying organic isn't such a financial hardship.  Especially when it's bananas, and the difference is 69 cents vs. 49 cents.  But I digress.)

The long-awaited Trial Bananas!

Once the bananas were chosen, I then had to actually feed the child.  Easier said than done, especially since I'm a weenie.  I actually figured we could just do it with his OT present, since we knew we wanted to do it on a Saturday, and she comes first thing on Saturday mornings.  So Saturday morning, around 9:30, it was Banana Time.

My next hurdle was presentation.  What was I supposed to do with it?  Peel it and hand it to him?  Slice it?  Mash it and spoon feed it?  Dice it and fork feed it?  Ultimately, I sliced and diced a few pieces and offered them with a fork, and I also mashed some and offered that with a spoon.  I figured that in future mealtimes, we could try frozen mashed banana, whole banana, baked banana, grilled banana, and the millionty other things the internet can think of.

Yummy!

He did really, really well.  By which I mean that he didn't scream in my face or throw it at me.  He dipped the spoon in the mashed banana and licked it several times, and he even licked mashed banana off his fingers.  He had five good minutes of messy slimy hands before he started stressing out about wanting them cleaned - which is huge for him.  He picked up one of the chunks and put it in his mouth, but then he spit it back out, and proceeded to pick up each chunk and deposit it into the bowl of mashed bananas.  Oh well.  I'm still saying success.  (I had no idea what the next 12 hours would bring.)

No hives.  Normal cheeks.  I did notice a small rash on the back of his neck and his upper back, but it's been a million degrees here in Philly this October, so I'm thinking heat rash.  Something to keep an eye on, but I'm not too concerned.  I don't remember seeing it before, but to be honest, I don't regularly inspect him.

The rest of the morning was uneventful.  We went to Gymboree for class, then Aidan was my lunch date at ABC, then back to Gymboree to try out a new Art Class (he dipped his ENTIRE HAND in paint! So proud!).  He went down for a nap pretty happily around 1:00 and Tom and I went about our normal Saturday routines - cleaning the house, relaxing, being adult humans without a screaming miniature human - you know, the usual.

At 2:00, Tom ran upstairs into Aidan's room.  I'm ashamed to say that my first thought was that I was annoyed.  Sometimes, when Aidan's refusing to nap, things are only prolonged by going in there.  Daddy's heart is more easily broken than Mommy's, and I thought that was what was happening here.  But when Tom called out to me, I heard in his voice that it wasn't just a refused nap.  Something was wrong.

When I got upstairs, Aidan was writhing around in bed, alternately bringing his knees up to his chest and then quickly straightening out his body - all the while screaming at top volume.  He was crying hysterically, gagging and generally looking pretty miserable.  Tom held him and rocked him for a bit, and then I offered to take over.  I gave him some tylenol, silently hating myself for daring to think we could trial a food and not ruin his life, and he seemed to calm and quiet down.

Suddenly, around 2:30, he started screaming again, sat up, and vomited everywhere.  Bad news.  If you aren't part of the GJ-Tube fan club, you might not know this, but someone who only feeds through their J Port shouldn't be able to vomit entire feeds.  It's bad news - it means the tube has migrated up out of the jejunum and into the stomach.  Since Aidan's stomach doesn't work properly, formula in his stomach causes him to vomit profusely.

We spent the next hour and a half on the phone with CHOP arguing over what to do - bring him in immediately vs. wait and see how he does - try a bolus feed into his G, try a bolus feed into his J (don't even get me started), feed him by mouth (again - don't even get me started).  Ultimately, we were (correctly) advised that since he cannot tolerate feeds into his stomach and the J tube was not in place, we needed to bring him in right away.

We arrived at CHOP around 5:30, hit up the convenience store for Diet Coke and Soft Pretzels, and were settled into our ER room by 6:00.  At 6:30, the nurse came in to check his sugars, since he's not used to being off feeds for long.  His blood sugar was fine (86.  They consider less than 75 to be low.) and he got a smiley face on his bandage.  He was not amused.

A for Effort though, guys.

At 7:30, the doctor ordered an abdominal X-Ray and placed an IV.  As usual, one vein was blown before the IV was started - so mental note - let's be careful with this one, ok?

Chillin' like a sick boy.

At 8:45, we were taken back for his X-Ray, and when we returned at 9:30, GI had somehow gotten wind of our arrival and was arguing about the plan of action with IR.  IR wanted to admit him overnight and replace his tube under anesthesia in the morning (the same procedure scheduled for Thursday - just moving up the timetable since the J had migrated out of place).  GI felt that we should admit him for feed intolerance/tube clog and attempt to unclog the tube, release him, and bring him back in on Thursday for the GJ Change Surgery.  Absurd.

Meanwhile, I'm attempting to keep a miserable toddler busy for hours.  No problemo, right?  Yeah.

As the arguing continued around 10, we were admitted.  X Ray results came back around 10:45 and we were told that the J was in place (so how did he vomit?).  The doctor wanted to move forward with Clog Zapper - however we felt that this was inappropriate since it is made with a pork product, which flagged as an allergen (glad we actually take the time to make all these updates!).

At 12:30, an Anesthesiologist ambled in, either high or exhausted (let's hope for the latter) and attempted to explain about how Aidan would be sedated for his procedure.  I think at that point, I would have signed him into child slavery - I was barely coherent myself.  I signed whatever those papers were just before Transport arrived at 12:45.  Aidan had finally fallen asleep, lucky ducky.

Finally, Refuge.  Old Reliable 5 South.

We had an awesome middle o' the night Nurse, Alice.  I hope we have her again.  Aidan weighs a not-so-hefty 25.6 lb (11.65kg).

It was 3am before we finally got to sleep.  Don't get too excited though - they have a "let's wake you up ever hour to check your IV make your kid scream" policy.  Which wouldn't be so bad if they didn't always super-innocently say "Oh, did I wake you?"

Ah well - crazy day.  Bananas Day 1.  CHOP Day 1.  Nobody knows if they're related or coincidental.  More to come once we get some sleep.

Never a Dull Moment - Dentistry

I took Aidan to the dentist today.  As expected, the screaming began the moment I took him out of my car.  He didn't recognize the building - or maybe he did - and he wanted no part of it.  It got louder and more intense with every step we took toward the doorway, and when we finally got inside, he was almost deafening.  He wouldn't even cozy up to the Ms. Pac-Man Game that they so thoughtfully provide (complete with stepstool and unlimited free plays!).

When we got back to the dentist's lair perfectly harmless room, I sat in a chair with Aidan, and laid his head down in the hygienist's lap.  She carefully chose a dye-free toothpaste and foam (Foam? No idea what this is.  Should I be foaming him?) after we talked through all twenty six of his food allergies (and let's not forget red dye!) and brushed his choppers.  Yeah, he was still screaming.

When she was done, the dentist came in and took a peek in his mouth - his teeth are nice and strong, although we still see some staining (whether from his reflux or the iron in his formula - we don't know) on the back teeth.  We'll continue to brush with baking soda at home and when we come back in 6 months, we'll discuss scheduling some OR time to have him sedated for a cleaning.  I'm calling it a win that she's unconcerned about the pacifier still.

On the way out, Aidan was rewarded with a new toothbrush, two stickers, and a yellow bouncy ball.  all was right in his little world - and he even stopped to play Ms. Pac-Man!

 

 Unfortunately, as I was buckling him into his carseat, I noticed a distinct reddening of his cheeks and a few scattered hives on his face.  Crap.  I knew I should have checked the toothpaste ingredients myself.  Allergy mom fail :(

Never a dull moment, but he's okay.  And now we know that we need to be more careful.

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: http://skeetersnacks.com/

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 :)

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!

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.

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: http://www.divvies.com/

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 :)

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.

Neo-Gate 2013 - A Week of Elecare

When last you heard, we were going to be giving Elecare Jr. a try.  Here's to a week of Elecare, what it's done for us, and where we are today...


3/1 - Day 0 - We received the OK to discontinue Neocate Jr. and begin Elecare Jr.  For the first night in more nights than my sleep-deprived brain can recall, we all slept.  Nobody threw up!  I was hoping it would help, but I didn't dare hope it would help this quickly!

3/2 - Day 1 - Maybe this isn't a fluke!  He didn't throw up!  This was a really great day, and it gives me a lot of hope that maybe - just maybe! - we have found a solution for Aidan.

3/3 - Day 2 - Still not throwing up!  Unfortunately, Aidan was a very angry baby today.  He woke up with a blistery bottom and was very screamy.  I'm a little nervous, but he's not throwing up, so can I really complain?

3/4 - Day 3 - This was a good day.  His mood was better, so maybe yesterday was some kind of anomaly.  A two year old being two.  Until midnight, that is.  Aidan woke up very suddenly and very angrily, screaming and arching his back.  He can't be refluxing, can he?  We're still on a PPI, even though I can't imagine anyone still thinks he needs it.  I'm starting to be reminded of food trials.  Specifically, the part where we fail them.  But it's so confusing, because most of the day is really good.  We'll keep up the reflux meds and keep going with the Elecare - because there's nothing else to try.

I spoke to Mimi at CHOP today and arranged to pick up more samples of Elecare Jr.  This stuff is seriously precious cargo!  Huge thanks to CHOP and Mimi, for continuing to work with us while we try to figure this out.  At least we aren't alone.

3/5 - Day 4 - Not as great a day, but still not terrible.  He woke up mid-nap screaming and refused to go back to sleep.  But I feel like it (might???) be safe to say that he's not throwing up his feeds anymore, which is a huge relief.  It tells me that it's not Aidan's little body failing him somehow.  It's Neocate.  Neocate failed him.  Which I guess we knew, but now I'm even more confident.  By bedtime, Aidan's cheeks were starting to look rashy and red.  This worries me...



The really nice thing is that now that Aidan's not throwing up constantly, he can eat on the go a bit easier.  Eating while running, jumping, and playing is now on the table.  He's begrudgingly getting used to the backpack - and I think it looks adorable on him!

3/6 - Day 5 - Aidan's got upper respiratory symptoms today.  He's been on his inhaler since yesterday.  He's sneezy and snotty and coughing.  We've had another little guy in daycare with him for the past few days, so maybe that's why, or maybe these are more symptoms that I need to care about while we figure this all out.  (I love playing "sick or just a toddler??")  Anyway, Aidan's face is still red and crusty today, which is a big part of his traditional soy reaction.  We're keeping an eye on it.  He's also dealing with some diarrhea and a sore, red bottom.  He's complaining that his belly hurts, but we did just have a button change last night, so hopefully he's just a little bit sore from that.  Pretty please don't be allergic to Elecare, Aidan.  I don't have the best feeling about this, but we'll keep going.

In super exciting news, Aidan has gained 4 ounces this week!  More than we can say for his progress in the past 3 weeks on Neocate Jr! 

3/7 - Day 6 - Aidan is congested and wheezing a little bit - I guess maybe he did come down with a bit of a cold?  His cheeks are still red and crusty from time to time, and he's still having diarrhea and a diaper rash.  He's feeling very clingy and overly emotional - He woke up several times overnight crying, asking to be held, and holding his tummy.  I really hate to keep doing this, but what other choice is there?

3/8 - Day 7 - Aidan is coughing a lot while he takes his feeds.  His tummy is still bothering him, and his diaper rash is getting worse.  He's very tired and cranky.  :(


So it's been a week now.  Aidan is worlds better off now that he's off the Neocate Jr.  I'm really thankful for that.  But I feel like Elecare isn't exactly the right solution either.  I don't know what else to do, though.  I'm NOT going back to Neocate Jr.  I'm afraid to try Neocate Infant, because I really don't know what the situation is over at Nutricia and honestly, my faith in them is pretty low.  I'm afraid to try flavored Elecare if we're already concerned that he may be reacting to the unflavored.  I'm really hesitant to try a steroid - we've been down that road and it was awful.  So what's left?  He's keeping the formula down and seems to be gaining some weight - so do we just go with this because it's the best we can do?  Can that really be the answer for my baby?  When he wakes up at night, holding his tummy and crying, can I really look into his little face and tell him that this is as good as it gets?

Neo-Gate 2013 - Steps forward (?)

You can find the beginning of the Neocate saga here -


With Neocate Jr. making Aidan sicker and sicker, we have known for some time that we have to change something.  And actually, we've been trying to make meaningful changes - it's just difficult to know what constitutes "meaningful" when we're trying to change a process that's previously worked nearly perfectly for over a year. And the frustrating thing is that you really need to wait a week or so between making any changes before making another one - just so that you give it time to actually help, and so that you know which change is helping (or making things worse!).  I feel like everything about this disease boils down to waiting...

First, we reduced the amount of Neocate we were feeding Aidan.  At his last appointment in January, shortly after the vomiting started, his doctor requested that we increase his daily target to 48 ounces.  FYI - 48 is a lot of ounces for a 25 pound toddler.  This had us feeding a whopping 24 ounces at night along with four 6oz feeds during the day.  Too Much!  Our new target became 42 ounces - which may not sound hugely different to you, but to me it sounded excitingly like six fewer ounces to mop up.

Then we waited.  And it didn't help.

Next, we changed the delivery.  We had been doing overnight feeds at 71ml/h and daytime feeds very quickly via gravity (by way of syringe - so - very quickly).  Now, we are pumping daytime feeds over 30 (breakfast and dinner) or 60 (lunch) minutes.  Huge difference.

Except not really, because nothing improved.  In fact, overnight vomiting actually seemed to get worse.

After three days of the new feed plan, I'd had enough.  I called the nurse.  I called the doctor.  I called the nutritionist.  I even called our Occupational Therapist.  I was desperate - someone needed to help us.  Not for the first time (and probably not for the last), our nutritionist came to the rescue.  "Start the Elecare tonight.  You do not have to transition him.", she said.  Music to my ears.

So 3/1 would be our first night off Neocate Jr. and on Elecare Jr.  I was really nervous, because Elecare hadn't traditionally been a great solution for us - but desperate times call for desperate measures.

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? 

"Just Sugar" Treats!

So, it turns out that there ARE treats out there for EGID kids :)  And actually, these would be a great allergy-safe treat for any kid in your life.  Nothing wrong with plain old sugar (in moderation, of course).

KFA's latest newsletter tipped me off to this ultra-cool Just-Sugar Christmas Tree Sculpture.  All you need is sugar and water!  It's easy to see how this would translate to lollipops for pretty much any occasion, too.

Check out the Kids with Food Allergies website for more awesome recipes and tips for allergy-friendly cooking and baking this holiday season!

How are EGIDs diagnosed and treated?

How are EGIDs diagnosed?

Diagnosis of an EGID requires an endoscopy/colonoscopy and biopsies.  Visually, the endoscopy may show furrowing, thickening of esophageal folds, abcesses, white plaque, and other issues.  Alternately, it may show nothing.  Without a biopsy and a skilled pathologist, the right diagnosis cannot be made.

Aidan's scope was visually clear, but his biopsies showed very high numbers of eosinophils.

A pathologist will review samples taken throughout the digestive tract, looking for tissue injury, swelling, and thickening of tissue.


Once an EGID has been diagnosed, food allergy testing is usually recommended to guide treatment and/or food reintroduction.

Skin prick testing (SPT) to different foods is the most common method of allergy testing, but since EGIDs are caused by a delayed reaction, SPT is of limited use.

Aidan's SPT so far has shown allergies to peanuts, peas, and soy. 

Patch testing, which looks for delayed reactions, is frequently used with some success.  But it's not at all uncommon for a food that did not show positive on an allergy test to actually be an EGID trigger food. 


Aidan's Patch Testing has revealed allergies to milk, egg, wheat, rice, corn, oat, barley, potato, beef, green bean, carrot, peach, and apple.

So Then What?  How do you treat this??

There is no cure for EoE.  No cure for any of these EGIDs.  The goal is to control the flares and alleviate symptoms.  Treatments take two approaches - Diet and Medication.


Elimination Diet: Dietary restrictions are guided by food allergy testing. Some doctors recommend that the "top 8 allergens" (milk, egg, peanut, tree nut, soy, wheat, fish, shellfish) be removed from the diet, in addition to the foods that were identified via allergy testing.  When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed. This may mean just removing some additional foods from your diet, or going directly to an elemental diet.

Aidan's failure to thrive was so scary that alongside his doctors, we chose to bypass the elimination diet altogether.

Food trials involve adding back one food ingredient at a time while observing for a reaction.  Most doctors recommend that food trials not be started until symptoms have completely resolved and no eosinophils are seen in the biopsies (a "clean scope").  Methods vary, but patients are often scoped and biopsied after each food trial, which can last 2-3 months.  It's a slow process, and patience is really important.

Aidan has trialed (and failed) rice and flavored formula.  A trial (and a failure!) is pretty emotionally difficult, and we're in no rush to try again.  We will, soon, but not yet.  

Elemental diet consists of a prescription medical liquid nutrition without any food proteins whatsoever. Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals.

Aidan drinks Neocate Jr (with a side of Calamari).

Elemental formulas are available in a variety of flavors, but they don't taste very good and patients often have a hard time drinking enough.  For those people, feeding tubes can help avoid malnutrition and failure to thrive.

Aidan was ultimately given a feeding tube for just this reason.

Medications for EGIDs generally involve steroids to control inflammation and suppress the eosinophilic reactions. Steroids are normally used only if dietary changes do not resolve the symptoms. Side effects from steroids often limit long-term use, and without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued.

Aidan did try a steroid, but it didn't work out well for him.  Your mileage may vary.
 
Many patients (Including Aidan) are also on high-dose proton pump inhibitors (PPI's) like Prilosec.  This helps control the reflux symptoms that can also be the cause of failed scopes.



Next week - Aidan's tests and diagnosis!