Plans, Plans, Plans - Scope Scheduled!

I promised to write again, before Aidan wound up in the hospital, and here I am!

We saw GI last week, and talked through what Aidan's been going through for the last few months.  All of the pain, the vomiting, the misery, the hospitalizations - EGID families, you know what I'm talking about.  Dr. L actually agreed that something is clearly amiss here.  CHOP has been admitting him, patching him up, and then discharging him with vague comments about "constipation" and "needing to be proactive" - but without any answers.  A year ago, when Aidan completely stopped tolerating his feeds - CHOP placed a GJ tube and called it a day.  No one ever really dug into why or what we should do about it. 

It was last Winter that all of the trouble really started - and it wasn't until March that we finally got any action out of CHOP.  A Gastric Emptying Study was done , and called normal, although he vomited the contents of the world up throughout the test (who decides this is normal???).

Because the study was normal, we decided to move ahead with the change of the G Tube to a GJ tube.  It was the right call, and I'm really thankful that we did it - but in retrospect, I wish I had pushed harder at the time to find out what was actually wrong.  Subsequent visits to the hospital never really got us any of necessary urgency around this problem - so ultimately, no one ever cared enough about this again to take another look.

Dr L says that he cares now.  He's ordered a full scope - upper and lower - with a simultaneously coordinately GJ button change.  He was last scoped in May, and there were "some" eosinophils but nothing "too troubling" (I hate this verbiage.  It makes me think no one counted.).  But something is not right in his poor little body.  I don't know what will come out of this scope, but I hope that we'll come to a new direction of some sort. 

On the food trial front, we've been working on strawberry for about two months now.  I use the phrase "working on" really carefully here - please note that I did not say "trialing" or "eating" - I said "working on".  After two months of work with three different therapists, Aidan will now semi-willingly lick slices or chunks of fresh or freeze-dried strawberry.  He will also lick the spout of a refillable squeeze pouch, but only if he cannot see any sign of red anywhere near it.  During these past two months, one therapist in particular has gotten Aidan to actually swallow a bite or two of strawberry a handful of times.  This is always (and I do mean always.  I reviewed my food journal this weekend, and it was depressing.) followed by 1-3 days of diarrhea and a hive-like and sometimes bleeding diaper rash.  Tom and I have successfully gotten Aidan to swallow bites of strawberries zero times, so I have nothing further to add there.

Nutrition and GI advise that this isn't enough to consider an actual trial, but it's something to be kept in the back of our minds as we scope him.  I'm almost tempted to puree some strawberries and tube them in prior to the scope, but with my luck, I'd clog the tube and he'd wind up in the hospital on Christmas Day, or something equally absurd.  So I'll keep my strawberries to myself.

CHOP scheduling actually called me on Friday morning to schedule - for December 23rd. Um, no.  I'm not doing that.  I'm not having a very CHOPpy Christmas, thank you very much.  What's your next available? 

So January 6th is the big day.  It's hard to believe that's really only 3 weeks away.  Which means his birthday is even closer than that.  The big oh-three.

I do have more to talk about - tomorrow is my first IEP meeting for Aidan - it's been a LONG few months of evaluations, new diagnoses, different service levels, new providers, and sleepless nights while we worry that we're not doing the right thing.  Hopefully it's all paying off.  Aidan started preschool two weeks ago and he's doing really, really well.

Back @ CHOP - Feeding Woes, What Else Is New?

It's only been a month since I've written.

It's already been a month since I've written.

Here we are again.  Like so many other times, the day started out fine.  We were having fun, being silly, taking photos for our Christmas card.  Aidan was in a good mood and no one knew anything was wrong. 

I'd noticed that he hadn't pooped since Friday morning - not something I'm constantly pondering - but when you have a GI kid, it's always in the back of your mind.  I gave some meds to get things going and didn't give it another thought.  We ran some errands, and I actually (insert famous last words here) remarked that he was in a good mood.

As the day wound down, Aidan sat in his high chair with a lollipop, while I cleaned up the kitchen.  I heard his episode of Bubble Guppies end, but no accompanying plea for "Moah Guppies!"

I found this:

My Grandfather on Christmas Day?  Close.

Super cute, right?  Tom and I took pictures and made appropriate amounts of fun of our little old man.  But then he woke up hard.

The all-too-familiar inconsolable screaming.  My mind instantly flashed back six weeks, to the Great Intussusception of 2013, and I immediately knew I had to call the doctor.  Of course we lucked into the practice's worst Pediatrician on call - but it probably didn't matter - we know by now that the Pediatrician can't help us.  He told me what I already knew.  I needed to get him to an ER.  Now.

We made it down to CHOP by 7, and were ushered into a small room called The Wedge - basically a tiny and oddly-shaped triage room that wasn't in use, but served to keep Aidan from freaking out in the crowded ER waiting room.  I appreciated it a lot.  We were triaged and taken back to ER Room 47 - a weird little out-of-the-way corner room with no outside foot traffic (and no working sink.  Yummy.).

By 8:00, we had a plan.  We would X-Ray him to check for belly problems - constipation, gas, the basics - ultrasound him to check for intussusception, and keep an eye on his blood sugar, since he was off feeds and not on an IV.

Absolutely COULD NOT get comfortable :(

The X-Ray happened around 9 and didn't show anything too significant.  Some backup, but nothing earth-shattering.  Two hours later, we finally got the ultrasound, and it looked okay - but we were cautioned that an intussusception is very hard to catch on an ultrasound.  It can telescope - go in and back out - so it can be fine one moment and then very not fine the next.  But as I said - the ultrasound looked okay, and no one really had answers for Aidan - so around midnight, GI was paged and the admission process was initiated.

Around 12:30, at GI's recommendation, they gave a suppository - but there was no effect.  An hour later, an IV was placed, and by 2am, we were brought up to trusty 5 South (5S11).  We settled in and I spent an hour or two working and rescheduling meetings before passing out for a couple of hours.

Zzzzzzzzzzz

After three luxuriously interrupted hours of sleep, I was up for the day to meet with the Attending, and talk next steps.  We gave Aidan an enema in hopes of moving things along for him, but with really unexciting results.  Aidan was given meds by G-Tube, which he promptly vomited.  Over the course of the day, the Attending avoided us like the plague - nothing happened for Aidan at all, other than that he slept and seemed to move past a lot of his discomfort.  He settled into a pale and lethargic state that made me feel absolutely awful for him.

 

Finally, toward early evening, I cornered the Attending and forced the conversation.  What are we doing?  Well, it seems that his GI tract is shut down right now.  What would do that?  Well, you know, we talk about viruses...  

The V word.  It's the dirty doctor word for "I don't know, but I need to say something, so I'll say this."  A virus is a thing that you don't treat - you just wait for it to go away - and it's the most frustrating thing for a parent, because when your child is hospitalized, you want someone to DO SOMETHING!  Fix him!  Make him better!  Help him!

But sometimes you really do just need to wait, and watch, and hold him when he cries.  And then celebrate the successes - like when he's feeling better enough to make a mustache out of his IV tubing.

This kid... I can't even...

I suppose at some point, someone should start trying to feed this guy.  I wish someone would tell me why his GI tract just stops working for no good reason.  While we're making wishes, I wish someone would tell me why his stomach stopped working at all last January.  And why we're now expected to shovel strawberries into it with any measure of success.  But that's another rant for another day, and I'll really, really try to come back and write about it before the next hospitalization.

CHOP Day 3

Day 3 was much calmer.  We started feeds overnight and things were very quiet.  No pain with the feeds, no screaming.  Just (very) slow advances as we move toward his target of 65ml/h.

I discovered the downside to our particular room location - all day and all night, we are treated to a symphony of screaming children down in the ER.  I can't really complain, given how often my child is that screamer.

Going home happened quickly - CHOP would have been happy to keep him, but he was ready to come home.   When a boy is prancing around in his hospital crib, demanding lollipops - it's time to go.  It would actually take us a few more days to get his feed rate up to 65, so ultimately I was really glad we made the decision to go home.

It really is amazing - when he's sick, he's so sick.  When he's better, he's a squintillion times better, pronto.

I got to take these little hamhocks home <3

CHOP Day 2

Day 2 started a bit rockily - IV checks every hour made for a seriously bleary-eyed mama by 8am when we finally called it a morning and introduced ourselves to our Nurse.  Erica.  Sadly, she recognized us from our last stay.  It's one thing to start recognizing nurses - but when they start recognizing you - it's time to stop having a sick baby!

Erica told us that she didn't know when or even if they would be able to fit Aidan into the schedule today for his Tube Surgery.  Extremely frustrating, but all we could do was wait to see.

A quick check out the window showed a Shields Family first - a gorgeous view of the ER.  This means that we're on the opposite side of the hospital than we normally are - it's so weird to have the room set up "backwards"

The rest of the day was insane:

9am: Another Anesthesia Consult.  We talked through the differences between anesthesia and sedation.  Because of his extreme level of terror, they think it's best to go whole hog (anesthesia).  But they tell me to have hope, and that as he gets older and more cognitively aware, he may start feeling safer and more able to handle what's happening to him without being put to sleep.

10am: Apparently I signed procedure consent?  Honestly, I vaguely remember a doctor asking me to sign something, and I signed it.

11:30am: Erica came in to tell us that we would be moving forward with the procedure, and almost immediately, Transport arrived.  Aidan wouldn't sit on the stretcher, so I carried him down.  While we waited in the PACU (post-anesthesia care unit) for things to get started, Aidan clung to me nervously, and we went through all of his allergies and medical history. 

12:00: Aidan went into Surgery.  I was told that it would be quick - Ten minutes or so for them to change the tube and quickly treat the granulation tissue.

This was the longest wait EVER.  It's always the longest wait ever, but still.  This felt insane.

1:30: They finally came out to speak with me about his surgery.  He did well, but it took (way) longer than expected.  They changed the tube, and downsized to a smaller tube (16Fr 2.0cm instead of 16Fr 2.5cm) - which is great, because we've ALWAYS suspected his GJ pain was due to a poorly sized tube.  They treated the tract with silver nitrate to remove the internal granulation tissue.  But the scary finding, and the reason for the long surgery time, was that they found an intussusception.  Basically, one part of the bowel slipped inside another part, causing an obstruction, which led to lots of pain for Aidan.  Intussusception is a medical emergency, and we're extremely lucky that it was found so early and they were able to fix it before there was any necrosis or tissue damage.  If they hadn't found it and fixed it so quickly, he could have lost part of his intestine, or worse.  Intussusception can be fatal in a matter of days if left untreated.

Looking as sad as I can.

Aidan woke up hard from the anesthesia, but lots of cuddles from mommy made him feel a lot better.

2:00 - Ready for Transport back up to 5 South.  We did not attempt feeds right away - he needed time to recover and rest.  He was snoring like a full grown man.

I felt awful leaving him, but I was starving, so a Nursing Student sat with him while I ran down to the cafeteria for some delicious elderly hot dogs.

Wouldn't be so bad if today weren't October SIXTH.

 2:45 - Aidan's IV became sluggish and the IV team was called in to save it.  We really couldn't afford to lose the IV, since the other hand was already blown.  Success, though - it was saved :)

3:15 - Plan was devised to start feeds at 4:30.  We would start at 30ml/h and increase by 5ml/h every 3h until we reach his goal of 65ml/h.  As long as all went well, we'd be discharged once he was at 65ml/h and tolerating it well.

4:45 - Feed started at 30ml/h

5:15 - Feed halted.  Aidan was in severe pain.  The doctors agree that he's not ready for feeds yet, and we will need to watch him carefully for any signs of a repeat intussusception.

7:00 - The pain has continued even without feeds, so we gave Tylenol and agreed not to restart feeds for a few more hours at least.  The rest of the evening was quiet and uneventful, except that Aidan demanded to be held pretty much the whole time.

If you aren't going to hold me, I'll just lay here and pick my nose.

Midnight - Feeds restarted at 30ml/h without fanfare.  We will increase slowly per the original plan, and if all goes well, we will go home sometime tomorrow afternoon.

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 :)

Holidays...

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!

Easter

 

St. Patrick's Day!

Halloween!

Boo!

Pumpkins are Scary!  No, really.  Scary.

Is there something on my head?

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! 

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: 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.

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.

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")

A weekend away

I think the idea started out kind of like this:

Tom: let's drive until we want to slit our wrists, then check into a hotel room that our darling son will trash in nanoseconds before declaring it "not home" and thus unacceptable for sleeping purposes. Perhaps also we might take turns seeing who can scream loudest, but Aidan will usurp all available turns. 

Me: OMG yes please, let's do that!

Aidan: As you wish, my lieges!

(Note: my memory of this conversation may/may not be colored by subsequent events. Probably not though.)

But really, we needed a little time away, and Tom has been wanting to get back to see Penn State for a while now. Our normal bag of tricks is starting to wear thin on Aidan, so I thought he might enjoy a change of scenery.  See photo below, in which Aidan is only slightly more than thoroughly unimpressed.  (Why I thought that my son, who can't handle transitioning from his room to the living room, would enjoy a change of scenery is really anyone's guess.)

What I can say is that we are pretty much pros at this whole packing thing. All feeding supplies and meds in a Thirty-One medium utility tote, fridge meds and ice packs in a lunch break thermal, clothes and special pillows (we each have one, actually) in a large utility tote, toys and crayons in a littles carry-all caddy, and we're ready to roll. Also? Stylish. 

Worst part of travel? The boy doesn't sleep if he can see us. And this room isn't exactly palatial. 

Sleep is for losers. Team Shields? FULL OF WIN!

What to Expect When You're Scoping - May 15, 2013

I'm not sure if I've ever really posted about scopes.  We've done a few now, and I remember before the first one, I was so nervous.  I had no idea what to expect.  Aidan was not even a year old when we did his first scopes - and the thought of surgery for your infant is probably the most nerve-wracking thing ever. 

My disclaimer - this is how they go for us.  In our world, a scope is an endoscopy and a colonoscopy.  So the prep and the experience are specific to that.

My other disclaimer - Yes, I am aware that this scope took place two months ago.  I'm a busy mommy.  I meant to write about this sooner, but life happens.

Step 1: We visit our GI and agree that we're going to Scope.  Maybe it's because we've been trying a new food.  Maybe it's because we haven't changed anything but his symptoms have flared up.  Whatever the case, the scope is ordered and we are told that scheduling will give us a call.

This happens within a few days, which is exciting, but then they smack you with the news that the next opening is in something absurd like six weeks.

Maybe it would be sooner if we scoped down at Main Campus... I don't know...  But we always scope at Exton.  Going down to Main Campus is really a bigger adventure and we try to avoid it.  I think it tends to bring me flashbacks of inpatient stays.  Main Campus just *feels* different to me. 

Step 2: We wait.  And we try to change nothing.  And that's nowhere near as easy as it sounds.  If he accidentally eats something, the whole scope could be worthless.  If he gets sick, he may not be healthy enough come scope day.  OR, he may seem healthy enough, but they may refuse him anyway.  See Step 3.

Step 3: About two weeks before Scope Day, CHOP calls to discuss his medical history.  They ask a slew of very important questions, and it's really important to be truthful.  But be careful not to be too truthful.  Example - it's important to tell them that he's used his inhaler within the past six months - because this means he needs to use it in the days leading up to and on the morning of his surgery.  It's important not to volunteer that he has a runny nose today, two weeks before surgery, because they will threaten to cancel surgery.  I am not even joking.  Unless the kid is critically ill, keep your mouth shut.  They will examine him the morning of surgery and if he's too sick to proceed, they won't.  Cancelling two weeks out because he might be sick when the day comes around is just silly.

Step 4: We wait.  Notice a trend?  We wait, we continue trying to change nothing, and we hope against hope not to get sick.  This is where I get psychotic about people coming to visit us while sick, or sick-ish, and I tend to kind of hide out in hopes of keeping him healthy.

Step 5: Two or three days before the Scope, CHOP calls to go over his prep.  I'm not sure how unique our prep is because Aidan is not an eater, but here's what it looks like.

Day -2: Full Liquid Diet.  This means formula only, which is all he ever gets anyway.  No biggie.
Day -1: Clear Liquid Diet: There would be more options for eaters (like broth or jellow or sprite), but for Aidan this means just unflavored pedialyte, starting at 8am and continuing all day and night.  Thankfully, we can tube it in, because unflavored pedialyte is absolutely disgusting and there's no way on earth he'd drink that all day.
Day 0: NPO after 4am.  I programmed the pump so that the clear liquids from Day -1 ended at 4am.  I have a serious love/hate relationship with the pump, but this is one of the times that I love it.  A little bit of quick math lets me figure out how to stop feeds when I need them stopped, no waking up needed.

Alas, my smug slumber wouldn't last long, since we had to wake up at 5am to give him an enema.  I took no pictures.  You're welcome.  I'm not sure how this will work when he's out of diapers, but that's not my worry for today.  It's easy peasy lemon squeezy with a diapered kiddo.  By which I mean he writhes and screams and clenches things that I don't even know how to clench, and for the love of all things holy, why are we doing this at 5am!?

Proof that we left on time!

When we arrive at CHOP, we change into bright yellow CHOP jammies and I get the iPad out to keep Aidan entertained while we wait.  Surgeries happen by age, and he's still young enough to be very early in the morning.  Our arrival was scheduled for 6:45am.

When we are called back, Aidan gets a quick checkup to make sure he's healthy enough to scope.  Happily enough, he is.  Anesthesia comes to talk to us about their plan (for some reason, there was a mix-up and no one ordered pre-meds for him.  With Aidan's severe anxiety around hospitals, pre-meds are a must and I refused to proceed without them.  So there was a slight delay, but we did eventually get some Versed on board.).  The GI performing the scope also stops by to talk about symptoms and anything that may be new or different since we last saw him.  By now, Aidan's getting pretty loopy from the meds, plus it's ridiculous-o'clock, and we Shieldses sleep in.

I think he's a cute little druglet, don't you?

The scope takes something like 45 minutes - it would be shorter if it were just an upper or just a lower - but since it's both, and since they have anesthesia to worry about, I end up sitting there FOREVER while parents of ear tube patients come in and out of the room like there's a revolving door (seriously - ear tubes are like a twelve second procedure)

When the doctor finishes up, he comes out to see me and tells me how great it went.  He always has some pictures to show and he tells me how the scope went visually (our scopes are always visually beautiful, no matter how many eosinophils are present).

I do have a couple of cool pictures to share from this scope - it must be his first scope since getting the feeding tube, because we definitely don't have any pictures like this from past scopes!

This is the balloon that holds the button in place, right on the inside of his stomach wall.

This is the tube that goes down into the jejunum and feeds into Aidan's intestines.

As I'm gazing fondly at Aidan's jejunum, a nurse comes to fetch me and inform me that Aidan's ready to be seen and adored.  And when I get to him, someone's clearly already been adoring him and his puppy.  Puppy pup is wearing Aidan's beloved socks, and Aidan is all tucked in and high on life (and oxygen).

It is always very hard for Aidan to wake up.  I've heard that they wake up more easily without pre-meds, but for us, it's just not worth it.  I talk with the nurse for a bit while he snoozes - she goes over how the procedure went (fine), and what I should expect when we get home (really nothing special, he might be groggy but overall he'll be just fine, and he'll be ready to go to school tomorrow).  We turn off his oxygen, and it's time to wake him up.

I start by untucking him and starting to let in the dreaded cold air.  No effect.

I hold him, I tickle him, nothing works.  I finally have to strip him down and get him re-dressed.  He's awake.  And he's miserable.

How could you dooooooooooooo this to me?!

 His tummy hurts a little bit because they introduce some air during the scope - and as a family, we tend to be very emotional as a side effect of anesthesia - but he's really none the worse for wear.

In this particular case, he cried all the way home, at which point he and I both promptly fell asleep.  But when he woke up?  Good as new!

So really, that's it.  That's a scope.  The last piece is waiting another week or so for the GI's nurse to call with results.  That's always the longest week of everyone's lives - and I have to imagine it's even more nerve-wracking when you're waiting to find out if you get to keep all of your newest foods! 

I'd love to hear more about what scope days are like for you!