CHOP in June - Part 2

EEEEEK!  It's AUGUST and I didn't finish telling you about our trip to CHOP in June.  Life really got away from us.

When you left us, Aidan had been painfully vomiting green bile.  After a weekend of this, we were sent to the ER for some tests, and ultimately allowed to go home.  A week passed without improvement and we followed up with GI, who sent us directly back to the ER, where Aidan was admitted on a Friday night.

Saturday on 5 South was exceptionally uneventful - no feeds for Aidan and no vomiting.  Scattered episodes of stomach pain, but nothing severe.  Around lunchtime, we started Pedialyte at 35ml/h (half of his normal rate) and it was tolerated well.  Around dinnertime, we increased to 70ml/h and after some initial discomfort, he settled down and tolerated that well too.  I don't know - maybe he just needed some gut rest?

A gut at rest :)

On Sunday, the doctors rounded around 10am and came up with a plan.  We'd be starting feeds slowly and increasing every four hours as tolerated.  If he had an episode, we'd call radiology for emergency imaging.  If not, we'd do imaging on Monday morning.  I figured we'd have a quiet day.  But it wasn't without bumps in the road.

For instance - did you know that if your child is on PurAmino, you should come prepared for no one - ever - to have heard of it?  For the formula room to insist they don't have it?  Nor do they know how to mix it.  Tom had to make an emergency trip downtown with a supply of formula to save the day.  When it arrived, it took hours - literally, hours - for the formula room to figure out what to do with it.  The kicker?  They eventually realized that they did have it (still didn't know how to mix it, so thankfully I recently blogged about how we mixed it - otherwise there's no way I'd have remembered).  Long story short - the 10am decision to start feeds actually took effect at 3:30 due to all of that hoopla. And advancing feeds every 4 hours?  HA!  We got up to 45ml/h before having to go NPO.

Sunday also brought some stoma pain - It's looking a little bit infected, which is a shame since it's normally such a beautiful stoma.  They ordered up some mupirocin (easy enough) and some tylenol, which caused a(nother) pharmacy debacle.  See, we don't use their tylenol, we use ours.  They don't have dye-free tylenol because dye allergies aren't real, evidently.  So we have to bring our own and send it to their pharmacy, where they verify it (whatever that entails) and eventually it arrives back in our room to be administered.  Unfortunately, the "eventually" is sometimes a while. Like an hour or two.  Which is really unfortunate for a kid who's in pain.  I later learned that the order was written incorrectly, which confused the pharmacy.  Then the pharmacy wrote a confusing note back to the doctor, who was (you guessed it) confused.  Then our nurse inexplicably left the floor without her phone, and the nurse filling in knew nothing about it.  Sigh.  We did work it out eventually. 

So as of Sunday evening, the plan to advance feeds was pretty well compromised, because he would have to be NPO (nothing by mouth.  Is that common knowledge?  I don't know if pre-all-of-this-me knew those particular letters, but we know them well now) at midnight in preparation for tomorrow's Upper GI.  We'd started at 35ml/h at 3:30pm, and around 8:30 we moved up to 45ml/h, but no further advancement because of the looming Upper GI.

An Upper GI is a special kind of X-Ray that helps doctors see the gastrointestinal tract.  Preparation includes drinking barium contrast (so some people call this a "barium swallow study") and then taking lots of pictures - usually about 2 hours' worth, and sometimes even more!

On Monday, we woke up just in time for the Upper GI.  Aidan took one itsy bitsy sip of Barium and then couldn't be convinced to take more.  Luckily, we aren't too concerned about the "upper" part, and really just needed to see the barium move through the stomach and small and large intestines.

The first thing we did with the Upper GI was take a "before" picture - his tummy without any Barium.

I spy a tummy!

 Then, Aidan took his tiny sip of Barium, and they took X-Rays.  And then Barium was injected into his G-Tube, and more X-Rays.  Then we got to cheat a bit, since he has a J-Tube too.  We got to inject Barium into the J-port, and the tech said that he thought we'd get out of there early!  After that, we had to wait in a little room for 20 minutes while the Barium moved through his intestines, and then back to the X-Ray machine for more pictures.  I'll speed this story up and tell you that we did not get out of there early, even with the cheating.  The tech was thinking we might only need one or two cycles of waiting/pictures - so we'd be done in less than 90 minutes total.  Actually, it took over four hours.

Ho hum.  Waiting is the worst!

Aidan's motility is not the best, even on erythromycin (his motility med), so the Barium really just wasn't moving through like we hoped it would.  It took forever.  But eventually, we did get a belly full of Barium.

We'll file this away under "things only a mother would love"

When we finally got back up to our room, Aidan took a nap and I got some work done while waiting for the doctor to come talk about the results and our plan for him.  Turns out it would be a preposterously long wait, since GI never actually came back and eventually left for the day.  Thanks, jerks.

Dainty

When GI came back the next day, we did learn that Aidan's Upper GI was not normal.  We already know that he has delayed gastric emptying - when food (or formula, whatever) is introduced into his stomach, it doesn't move through at the normal rate.  This is why it took so long for the Barium to move through.  The test also showed some not-too-specific inflammation of the colon - which could be from normal illness, or could be from an EGE flare.  Not really any more information than we previously had.

Ultimately, we decided to bring Aidan home, with orders to return immediately if the bilious vomiting began again.

It was more or less the same as ever.  Aidan in crisis, needs gut rest and IV fluids for several days, and a slow reintroduction of feeds.  I wish I knew why this keeps happening to him :-(

Side Note...

The whole time we were inpatient, Aidan was on contact precautions due to a suspected c-diff infection.  The hospital was unable to confirm or rule out the infection because - true to form - Aidan's digestive system shut down and no test sample could be obtained.  This particular monster would come back to bite us later on.

Final Thoughts...

I understand that CHOP is ranked #1 by US News & World Report, but clearly, they've never actually stayed here.  Or they don't have children.  Or they don't need fancy luxuries like a pillow to sleep on.  I do wonder how different our experience would be with a planned admission for a surgery.  Emergency Room visits that end in admissions are just always so nebulous and vague.  Who knows what we're doing or when we're going home?  My experience here would be at least 80% better if doctors could be bothered to clearly communicate. 

CHOP Inpatient - Musings on Feeds

After Aidan's scary-yet-fun (?) ambulance ride to CHOP on Tuesday night, we settled into our room on 5 South and awaited a plan.  I swear, that's all we ever do here.  Wait for someone to figure out how to help him.  And in the end, it's always a patch up/send home job.

Aidan had no problem immediately falling asleep.  I, on the other hand, stayed up to panic about work and ponder what the appropriate hour was to text my boss.  Finally, I had to reach out and admit that I was here, with no access to my work laptop or phone, and would be missing several important meetings.

I hate this part.  Obviously my child is the most important thing in the world to me - but I pride myself on the work that I do, and not giving 100% does not sit well either.

Listless boy :(

Anyway - what Aidan really needed were IV fluids for hydration and gut rest.  Late in the day, we started up Pedialyte, and he finally produced wet diapers.  He really seemed to perk up quite a bit.

Toddler Problems: he's a righty.  no coloring :(

When we started up the 1/2 Pedialyte/1/2 Elecare mixture, he starting showing signs of a flushed face - but no fever.  Odd, and I actually asked several times that his temperature be rechecked because he felt warm to the touch - but no fever was recorded overnight. 

He was clingy and moaned a lot in his sleep.  But no fever, and no vomiting, so we advanced the feed to full Elecare.

We did get some sleep overnight, despite his discomfort, and when I woke up, I did my usual check of the room.  I always double check his feeds and rates and vitals - just to see how he's doing.  What I noticed made me instantly sick to my stomach.

Elecare Jr. Vanilla.  VANILLA.

Yup.  The doctor ordered the wrong formula.  The nurse hung the wrong formula.  They fed my baby the wrong formula.  Formula he's reacted to in the past.  This is not okay.

I feel guilty for being asleep at 6am when this was hung.  But I can't feel guilty for sleeping.  I can't feel guilty for their error, and their lack of quality review.

Aidan is okay.  He was uncomfortable and flushed in the face - but he is okay.  What if the mistake had been a dairy-based formula?  Or a soy-based formula?  What if he'd suffered anaphylaxis due to this mistake?  It's not okay, and CHOP needs to get it together.

The rest of the day was frustrating and disappointing.  The usual CHOP fare.  He's not pooping (surprise, surprise) so we're giving Miralax (no results).  He's feeling much better now that he's hydrated and is really ready to come home.

The main thing slowing things down is that I spoke to a GI, explained alllllll of our sordid formula history (the neocate drama - the G feed intolerance - the GJ tube change - the ensuing frequent hospitalizations).

It is my genuine belief at this point that he DOES NOT tolerate Elecare Jr.  When we give it by mouth or G-Tube, he gets rashes, vomiting, and GI pain (Screaming.  So much screaming.  Especially at night).  When we give it by J-Tube, because we have bypassed the stomach, the symptoms are different - but we get decreased motility (leading to constipation so severe, he ends up hospitalized for cleanout) and pain/discomfort.  He's not getting the rashes and vomiting - something about the chemistry of the jejunum vs. the chemistry of the stomach seems to produce a different set of symptoms.  But it seems clear to me.  Before we started Elecare Jr, do you know how many times he had these lower gut issues?  ZERO.  It's related.  It has to be related.  And I think it's the same, whether it's flavored or unflavored.  We never had these issues on the well-tolerated unflavored Neocate Jr or Neocate infant (but, interestingly, we did have the same set of symptoms on flavored Neocate Jr and Splash).

The GI I spoke to this morning seemed on board.  He said that clearly there was an allergic process in play, and that we needed to investigate the micronutrients in the formula to see what he was reacting to.  He even said he knew of a GI in the hospital today that he thought could help.  But he never came back.

Instead, he sent someone else - a resident, I think - to tell me that he was in the OR for the rest of the day, but thinks we should follow back up with our own GI in a month or so, and consider seeing an allergist.  Sound familiar?  It should.  It's what we're always told.  It's nobody's problem.  It's nobody's responsibility.  GI thinks Allergy should help.  Allergy refers us back to GI.  Everyone feels that things are going "generally well" for Aidan.  Everyone but Aidan, who's living in pain every day.  Aidan, who's dying to eat, but starving to live.

Someone has to help us.  Someone has to care.  I was hoping we would find someone today.  We didn't.

Day 4 - Still Inpatient & Happy Easter!

Day 4 - Happy Easter!

The Bunny did not disappoint!  I'm told that he schlepped home late last night to bring back Aidan's Easter Basket so that we wouldn't have to miss out on the holiday.

I think because Aidan can't have candy, The Bunny feels a little bit guilty and may or may not get a bit more stuff than Aidan really needs.  But at least it's contained in one basket - Facebook would have me believe that Easter is reaching Christmas proportions nowadays!

Aidan got a new pillow pet (Deetz (Biscuit) has seen better days, and really, can you ever have enough pillow pets?), a stuffed bunny, a stuffed platypus, a stuffed peep, an Easter book, a CD of kids songs for the car, a Superman coloring book, Superman pens, a new toothbrush, toothpaste, and a slew of rubber ducks.  Also - the biggest hit EVER - Superman shoes!

Noo-Nah!

The shoes were enough to encourage him to get out of bed and run around for a couple of hours.  He's off his IV because it clotted up yesterday and no one could get it to flush, so our wonderful day (Alex - we love her!) just pulled it.  It was doing him no good anyway, and now he has his arm back!

Today, we are up to full strength Elecare Jr.  My fingers are crossed, I guess, although I don't even know what I'm hoping for.  I hate seeing him miserable and vomiting.  But I also hate seeing him tolerating the feeds like everything's fine, when I know that everything's not fine and hasn't been fine in months.  I'm afraid that he'll tolerate feeds okay here because he had such a long break from them, but by the time we get home he will be back to his pukey self and we will have accomplished nothing.  We are still waiting to hear whether or not IR will place the GJ tube.  I think the GJ is the right move, but Tom doesn't want to do it.  The doctors want to do it but aren't sure he's healthy enough for IR take him.  We'll see how it all shakes out, I guess.

In the meantime, we had a fairly quiet day and full strength feed were tolerated pretty well.  He's getting the less tangible symptoms - the reddish cheeks, the coughing, the tantrums immediately after feeds - but he's not vomiting.  So I guess they call this "good enough"?

Day 1, Part 2 - Tests and Plans

The second half of Day 1 was just as eventful as the first half.  On admission to the floor, Aidan was weighed, and we found out that he's down to 10.3kg.  He was 11.5kg on Monday.  That's over 2.5 pounds lost in two days.  While no one in the universe but me stresses over this, Aidan relaxes in a bed that he can't fall out of.

 I busy myself trying to be entertaining, but even my hugely successful glovey-balloon falls flat.  Tough crowd.

At noon, his IV fluids are upped from 40ml/h to 41ml/h.  This passes for news around here, because the pumps are brand new (like, this is the first day anyone's used them) and nobody really knows how to work them.

Ooh.  Aah.  Shiny newness.

Nikki left around 12:30 and not 15 minutes later, GI came in to discuss The Plan.  We will be doing a Gastric Emptying Study, and possibly a repeat scope, and possibly changing the G-Tube to a GJ Tube.  I have no idea why we're only possibly rescoping.  I will be pushing hard for this.  Not during this conversation though, because we're literally mid-sentence when the Attending is paged, and he left.  He told me that he had "another patient" and he'd "try to stop back in."

Around 1:30, Megan arrives, and Aidan rejoices.  We talk and catch up and get ready for the Gastric Emptying Study.  I snapped a picture of Aidan relaxing - and he looked pretty good.  Calm, relaxed, not pukey.

Not half an hour later, as we head down to Nuclear Medicine for the Study, we notice that Aidan's getting very red.  He's also getting really cranky and whimpery, and hot. 

Note the Allergy Cheeks starting up. 

The Gastric Emptying Study was traumatic.  For me, mostly.  I think Aidan was too far out of it to really understand what was happening around him, but basically they strapped him to a table and pushed in Elecare laced with Radioactive tracers.  We would then get an hour and a half's worth of imaging to see where the feed goes (and how quickly).  This way, we can tell if he's aspirating anything, or if the stomach isn't moving things through quickly enough.

No energy left to fight his restraints, poor kid

The doctor ordered 6oz of Elecare for the test - but as they pushed in the third ounce, the vomiting started.  At ounce four, they decided to stop administering the Elecare - he clearly wasn't keeping it down.

Radioactivity?  VOM!

The most disturbing part was that he was strapped to this table while vomiting - totally unable to lift or turn his own head.  I'm pretty sure I'll have nightmares about this forever.

 By the time we got back to 5 South, Aidan was feeling pretty miserable.  We had a new inept nurse, Dayna, and we strong-armed her into ponying up some Tylenol.  I hate hearing him whimper with every single breath.  Just not okay.

Around 6:15, the pediatrician working with the GI Attending came in to see me, and I complained about the Attending blowing us off.  She asks how much of The Plan I'm aware of, and I said that all I knew was the Gastric Emptying Study, which we've now already done.  Are we now planless?  We're not, she assures me, we're scheduled for an upper endoscopy tomorrow.  Um, no.  Just no.  We're not doing upper only.  Not when his disease lives in the lower, and his GI has always done upper and lower together.  I warn her that I won't be giving up without a fight - I feel very strongly about also doing lower.  She says she'll "take it back to the team."    I'm expecting a Battle Royale.



Around 8, Nurse Dayna decides it might be fun to start feeds.  I disagree.  I explain again that he couldn't even tolerate the 3oz needed for the Gastric Emptying Study.  Another 7 ounces seems stupid to me.  She eventually agrees to keep him on the IV, and keep him NPO after midnight in case GI agrees to add the lower scope to tomorrow's plan.

We are tired beyond tired, so Aidan and I both try to pass out.  It works better for some than for others, for sure.

Around 10:15, I'm startled awake by a new nurse (Daniel?) who calmly explains that Aidan may have blown his IV, but they're calling the IV team to try saving it.  The IV team arrives in the form of one tiny lady named Mimi - but who am I to complain - she saved it!

At the same time, Anesthesia stops by to confirm him for Surgery tomorrow (they only know about the upper - grr - we WILL be doing both!).  I'm so tired at this point that I'm not even sure whether or not I signed consent.  I must have, because he eventually left.

Around 1:30am, Aidan spiked a high fever again, and even with Tylenol, he spent the next 2.5 hours screaming.  Screaming to be held, screaming to be put down, screaming for water, and just screaming for the sheer pleasure of it (okay probably not really.  But I'm so tired that I'm starting to hallucinate.  It feels like he's screaming for fun.).

I'm desperately hoping that tomorrow brings some sleep.  We both need it.

Day 1, Part 1 - Emergency Department & Admission

Day 1 kicked off in the wee hours, as we were brought to our ER room just after midnight Wednesday night/Thursday morning.  After about two hours of vitals-taking and nothing-doing, we had a plan.  Get an X-Ray (to check on tube placement) and get a Dye Study (another check for tube placement).  Meanwhile, Nurse Tim confirmed that CHOP can't come up with any dye-free tylenol or motrin (This is why I bring my own) and took our stash with him to be verified by the pharmacy.

note the totally unofficial drugs in the background

So off we went to Radiology around 2am, and boy did he love that.  Except I'm totally kidding, because he hated it.  Back in Room 11, Nurse Tim showed up to take some samples to test for blood in stomach contents and stool.  Negative for both, whew.  The X-Rays came back and indicated proper placement of the tube, so we went back for a dye study around 3:30am - I guess it's a more reliable way to check placement?  That one looked good too - no issues to report, except maybe that he had some constipation.

Gee, I hope nobody sticks anything awful up my diaper area...

Never fear, Nurse Tim is here.  With two enemas.  At 4am.  Holy mother of god.  I'll spare you the gory details - suffice it to say that a change of BED was required. 

Not sleeping at 4am

Around then, I emailed my boss to let her know that I was still in the ER and wouldn't make it into work.  Panic is starting to set in, because this situation is chillingly familiar.  I need to still be employed at the end of this hospital stay.

The boy nods off briefly at 5am.  And yes, those are "Taddy Shoes!"

Sleeping like a baby.  A baby who is likely to poop the bed.

Not having slept in days - like, literally days - I finally nodded off in the pooped bed, only to wake up at 5:30 because some doctor is holding a phone in my face, saying the GI on call wants to talk to me.  I wish I'd written down her name - the conversation wasn't good.  The gist was that she didn't think we needed to be in the hospital, and the best thing would be for us to go home and see our own (CHOP) GI on Friday.  She asked me, point blank, "Really, what's your concern here?"  AYFKM?  My concern is that my child is both dehydrating and starving to death.  My concern is that I can't provide care for him anymore.  My concern is that NO ONE IS HELPING ME.  I said that while I wasn't opposed to going home, because home is awesome, I WAS opposed to leaving with a child that I cannot feed.  Especially when our own GI's office told us that in all likelihood, they would be unable to help us much in the office, and that we belonged at the hospital.  Out at Exton, our own doctor can order tests.  Here at Main, these doctors can actually perform them.  I put my foot down.  We aren't leaving without answers.  You have to help us.

So we agreed to try some feeds.  Around 7am, we had a 2oz Pedialyte feed.  It went okay - and at this point I was a little bit worried that they were going to think I was a crazy hypochondriac.  At 8am, right at the tail end of the Pedialyte feed, we started a 7oz Elecare feed.  Half an hour or so into that feed, the doctor came in to check on us.  Aidan was sleeping restlessly, but not crying and certainly not vomiting.  So far so good, I reported.

Doctor Disbelieving wasn't three steps out the door when Aidan bolted upright in bed, coughed, and spewed forth EVERYTHING.  Thankfully, my bucket-grabbing reflexes are getting pretty good these days.  Nikki went for the nurse, and it took half a glance at Aidan filling his puke bucket for her to confirm that he'd be admitted.  Doctor Disbelieving couldn't argue at this point.

The nurse placed an IV, drew blood for labs, and started fluids.  As this was happening, I started to notice that, as usual, Aidan's body was reacting to the feed and the vomiting.  He gets bright red cheeks, a cough, a runny nose, and his body gets hot.  VERY hot.  A temp check clocked him in at 102.5, and a dose of motrin (and an hour later, a dose of tylenol) did little to bring it down.  Poor bugaboo.

Elecare out, IV in, waiting for a room

We hung out in the ER until about 10am, waiting for a room and a crib - and finally - TRANSFER TIME.

Neo-Gate 2013 - Are you sick of my updates yet?

I'm sorry that I have nothing more exciting than this to write about.  Maybe I should - but I don't. 

We stretched our two cans of PurAmino out to last 3 1/2 days.  The household is kind of split on how we feel about it.  Tom thinks it's the best formula we've tried.  Megan has no opinion.  I think it's no worse than Elecare, but really no better either.  I think it makes him hyper and extra emotional, which I guess the Elecare does as well.  All other things being equal, I take equality as a reason to choose Elecare, because it's easier to get my hands on if (WHEN) Medco decides to delay our shipment for no apparent reason - as they've done EVERY three months since we've started these formulas.

The plan right now is to get him back on Elecare Jr. (CHOP - I'm coming to raid your samples closet) until we can get in to see Dr. Liacouras (GI) on the 29th.  I need to spend some time between now and then gathering my thoughts and coming up with a game plan (seeing Liacouras without knowing what you want from him is a disaster).  I think the game plan will include having him scoped and biopsied as soon as humanly possible.

In addition to the (IMO) obvious - ruling out any anatomical issues causing this sudden feed intolerance - My rationale behind the scope is this:

Possibility 1 - He scopes clean - Great!  Fantastic!  We keep him on Elecare Jr. and decide that the behavior changes we've seen since things with Nutricia went awry are not related to his EGID.  We can then turn our focus back to weight gain and feeding and speech work.  We can also donate our small stash of "safe" Neocate Jr. to children who aren't able to survive on Elecare Jr.

Possibility 2 - He doesn't scope clean.  Elecare isn't working.  We decide how best to stretch out the "safe" Neocate that we have and what to do as we move forward.

I'm cautiously hopeful for Possibility #1 even while I think Possibility #2 is the more likely scenario.  But it's a plan, and it's as far ahead as I can go right now.


No news yet from Nutricia about the testing done on the product that we shipped back to them.  We are supposed to hear something this week.  I doubt they'll find anything, but God do I hope they do.  It's insane to think of the lives that could be changed (infinitely for the better!) if this could be straightened out.

In other news, and this is really a post all of its own, I've been able to team up with several other moms whose children are affected by this disaster.  They've put me in touch with people willing to get us some safe formula at low cost.  There's not that much formula out there at this point, and it warms my heart that someone ensuring that no one goes without while there's still something we can do about it!

So as soon as we get Aidan to see his doctor, we can start him back on his safe formula  - at least a little bit, at least sometimes, at least it would be a break from what's making him feel so badly.  Some boxes of formula arrived yesterday and I cried (happy, grateful tears!) the entire time I was putting that precious powdered gold away.  I'm so thankful that people like this are out there, willing to help give my little boy a chance. 

This is what I'm fighting for.  This is why I'm doing this.  This is why I can't just "leave it alone".  He's sweet, and he's beautiful, and he deserves to be happy and healthy.

Neo-Gate 2013 - PurAmino

Neocate Infant was a NO - but our wonderful RD pulled another one out of her hat for us, and asked us if we'd like to try another Amino Acid formula called PurAmino.  I'd never heard of it - it's made by Mead Johnson and isn't as common or popular as Neocate or Elecare, but obviously we're willing to try it.

As a product, it's frustrating, because it's a 20 calorie formula.  meaning it comes with an itsy-bitsy scoop and no 30 calorie mixing instructions.  And where Neocate gives a page-long grid of 30 cal instructions (and Elecare at least provides "small", "medium" and "large" batch instructions) - PurAmino gives instructions for a quart or .77 oz.  Thanks.  Helpful.

But I got out my handy dandy notebook and did some (hopefully correct) math and Aidan spent Saturday and Sunday on PurAmino.

My impressions:

• It mixes really lumpy.  I'm not sure why.  I mix it the same way that I mix the others.  But this one's clumpier.  It hasn't mattered though, and as long as it's not causing pump alarms, I suppose I don't really care.
• I don't know how it tastes - honestly, we haven't been pushing oral intake with Aidan.  For better or worse, our efforts are focused elsewhere.
• It doesn't smell half as badly as Elecare. 

The really important thing is how he tolerates it.  So far, no throwing up.  Which is great!  But we're only two days into the trial, with about enough powder for another day and a half - so it's going to be very hard to tell if it's better or worse than Elecare Jr. in terms of his behavior and how he feels overall.  I hesitate to shout WIN from the rooftops, but it's not an abysmal failure like the Neocate Infant was, either.  I'd love to say that time will tell, but we just don't have the luxury of enough sample product.

Neo-Gate 2013 - Neocate Infant

After deciding that Elecare Jr. wasn't the best of all possible solutions, we decided to try Neocate Infant.  We hoped that whatever terrible thing happened at Nutricia was isolated to Neocate Jr.  (At this point, Yes, I believe something has happened.  Maybe Nutricia changed something knowingly.  Maybe Nutricia had a cross-contamination issue.  Maybe Nutricia changed a supplier.  Maybe a supplier changed something and never told Nutricia.  Maybe a supplier had a cross-contamination issue.  There are a thousand maybes, and I don't have answers, but I am 1000% sure that something is going on over there.)

Saturday morning, I excitedly woke up and cracked open the first of the three cases of Neocate Infant that Christine over at Nutricia sent us.  I have this huge grid that tells me how to mix it at 30 cal for a big strapping boy like mine, so not to worry about that pesky "Infant" word - we can make this work.

Things seemed mostly okay on Saturday, except that Aidan's cheeks seemed even redder than they were on Elecare, and his mood was even worse.  He slept through on Saturday night, but he whimpered a lot in his sleep, and I never take this as a terribly encouraging sign.

Sunday wasn't so good.  He threw up on Sunday morning about an hour after his breakfast feed.  We tried to chalk it up to over-excitement, reflux, or a fluke, but his emotional downward spiral seemed to confirm that it was likely related to what I was pumping into his body.  Again, he slept through the night, but he woke up very suddenly Monday morning just before 7am crying and vomiting.

By Monday, I decided that I'm not going to keep pushing him down this road.  Neocate just isn't working out.  I moved him back to Elecare Jr. Monday morning while we began to try to think of what to do next.  He threw up his breakfast feed, but my guess is that he's still working the Neocate out of his system.


Here's where I start making wild guesses.  Bear with me.

The bottom of a can of "safe" Neocate looks one way, and the bottom of a can of "unsafe" Neocate looks different.  We refer to this as the "Old Label/New Label" problem, but really, there is a subset of "Old Label" Neocate that still isn't safe for these kids.  "Old Label" Neocate is only safe if it was manufactured on or before April 25, 2012 (and expires on or before October 22, 2013).  There is at least one batch of "Old Label" Neocate out there that expires on 11/18 and it is NOT safe for Aidan.  The visual difference is on the stamp on the bottom of the can. 

The Old Can

The New Can

Both Cans

To me, this says that there was a process underway to change the packaging - can stamp included - that began with the batch that expires 10/28.  That batch got the new can stamp, but not the new label.  All later batches got the new can stamp AND the new label.  And all cans that were a part of this new packaging change - whether label, stamp, or both - adversely affect my son and several others.

Now if you look at the Neocate Infant, which did NOT undergo a packaging change, you will see that the can stamp is in the "New" style as well.

Infant

Aidan spent at least 3 months on Neocate Infant when he was younger - and NEVER did he throw up like this.  Not until Nutricia underwent this packaging change exercise.
 

Something is going on.  Something is just not right.  

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.

Our Neocate Story - The Background

When Aidan was nine months old, he began drinking Neocate.  I firmly believe that it saved his life.  It wasn't until he began the Neocate that he started growing and thriving - gaining weight, taking developmental leaps, and laughing.  Watching his beautiful personality unfold was a gift that I can never repay - because I truly believe with all my heart that we never would have made it to this day without Neocate.

You'll understand, then, why I'm so heartbroken that Neocate is failing us now.

The first year on Neocate was wonderful.  I use the word "wonderful" sort of ironically, since "wonderful" included more hospitalizations and stress and worry and surgery than any baby should have to endure - but through all of it, we could trust that his formula would keep him strong and healthy.

In August 2012, Nutricia redesigned the graphics on the label of the Neocate Jr. can.  It was such a non-event, I didn't even give it a second thought.  I wasn't sure when I'd see the new label, but I didn't care - it's a label.  Whenever Medco got it and shipped it, I'd have it.  More importantly - who cares?  It's a graphic on a label!  

This non-event started making news soon after the "New Label Neocate" hit the shelves - small pockets of people began voicing concerns with the formula.  Children who had been tolerating it for a lifetime suddenly couldn't tolerate it any longer.  Late in 2012, I did read something about this online - but we've had so much of our own going on, I just didn't have the emotional energy to give this more thought than Oh how awful.  I hope they fix it.  I'm so glad that's not us.

January 2013...  Our new shipment of Neocate arrived - (and oh, hey, there's that new label) - and life was busy, and I was getting ready to go back to work, and I didn't have much time to connect one dot to another - but Aidan was sick.  A stomach bug, but not a stomach bug, because he never got worse and he never got better.  An allergen exposure, but not an allergen exposure, because keeping him home/cleaning the house/increasing our vigilance never helped. 

First, we noticed the allergy face.  The tell-tale scaly red eczema rash on his face that always tells us he's gotten into something.  That comes with the allergic shiners - the ones that make him look like he's gone a few too many rounds with the heavyweight champion of the world.  But of course it didn't stop there.

Then came the diarrhea, complete with blisters and open sores anywhere that poop touched his poor little bottom.  And the vomiting, more often than not, when he drinks or we pump in formula.  Vomiting that leaves him dry-heaving and exhausted in the middle of the night (and let's not get into the increase in laundry...)

Maybe the worst part is his mood.  My normally sweet-natured little boy becomes so angry - furious with the world for making him feel so badly, and furious with me for not fixing it.  (No, I take that back.  The worst part is definitely the vomiting.)

So here we are today, two months later, feeling angry and confused and betrayed by what has always been a constant source of reassurance to us.  My little boy cannot eat - literally cannot eat - without being violently sick.  And we can't just stop feeding him - we have to keep trying - so every day is just as awful as the one before.

We are not in this alone - and over the coming days I'd like to tell you more about what we've tried and what we're planning to try and what our path forward is.  In the meantime, you can learn more about children just like Aidan who are living this too.


Save Little Michael

Lidija's Hope

Once Upon a Storytime

Once Upon a Time, The Shields Clan went to storytime.  It was lovely, fun was had by all, and the Clan gleefully pledged to return weekly, forever and ever thereafter.

Even our dog knows how absurd this tale sounds.

She's laughing.  Or yawning.  Certainly not about to eat the camera, unless it's a gummy bear-flavored camera, in which case all bets are off.

I'll try this again...

Once Upon a Time, The Shields Clan went to storytime.  I won't name names.  Oh okay, yes I will.  It was the Lower Providence Library "Older Twos and Threes" Storytime.  We hadn't been to this particular storytime before, so we didn't know what to expect.  It took some bumbling about before we found the right room (actually, it took my sarcastically saying "I wonder where storytime is" and creepily loitering around the large crowd of children until the start time came and went, and I finally asked and was pointed to a side room.  But whatever.), so we were a few moments late.  Seriously, just a few moments - they couldn't have been more than a couple of pages into the first story.  But our late entrance was just the start of our problems.

As we entered, looking perfectly respectable and appropriately ashamed at our tardiness, the librarian stared us down, pausing her story long enough to inform us that this storytime was for "Older Twos and Threes."  We assured her that we knew (having read the signage outside), and that he was indeed 2, and then we attempted to quietly slink in without further disturbance.  The librarian really disagreed with our assessment that Aidan belonged in this storytime (instead of the Infants - 2's) and again said that this was for Older Twos and Threes (her emphasis, not mine), and that there would be lots of reading (gee, and I was hoping for lots of swimming.  Shucks.).  When we didn't vacate the premises, she said she guessed we were welcome to stay.

I do understand the reasoning behind breaking up age groups.  I understand having an age split, and I do see a natural difference between children that are nearly three and children that are newly two.  HOWEVER, this librarian knew nothing of my son other than what she saw in the first nanosecond that she laid eyes on him.  She didn't know how old he was, how well-behaved he was, or how developmentally advanced or delayed he was.  I can only assume that she quickly decided that he didn't belong simply because of something she saw - and what it was is anyone's guess.  Short stature?  A youthful face? The fact that he's not "a regular" at that storytime?  Whatever it was, it's not exactly shocking that our children are learning prejudice earlier and earlier in life.

I stand by my assessment that Aidan belonged in THAT storytime.  The books were age-appropriate and interesting to him.  He was engaged in what he saw and heard.  He even owns some of the books that were read.  With where he is intellectually, what we are working on teaching him at home, and how he personally learns best, I don't think a class full of infants would have been beneficial to him.  I didn't just stumble into whatever class I thought sounded lovely.  I considered what would best fit his needs and abilities and attended that storytime quite on purpose.

I realize how irate I sound right now.  You think I'm overreacting.  But that's only because I know how the rest of that storytime went.  Read on, friend.  Read on.

As the librarian read her stories, Aidan got excited.  He loves books!  As she read a story about animals and the sounds they make, my silly little boy started to giggle.  He was rewarded with glares.  When he imitated the animal sounds the librarian made, she answered him with shushes.  When Aidan found a stray sticker on the floor in front of the librarian and tried to give it to her, she wouldn't even look at him.  Clearly, the expectation of this group is that during storytime, a preschooler should be motionless and silent.  Who are these zombie preschoolers, exactly?

Now, I do understand that a library is a place to be quiet.  And actually, Aidan understands this too.  He was using his quiet voice and making his quiet sounds.  When the loudest sound to come out of a two year old during storytime is a giggle, I fail to see the problem.  It's not as though he was disturbing a room full of SAT-takers, either.  The rest of the group was comprised of two other preschoolers.

The best (worst?) part?  A book that was read while (thankfully) Aidan was in the restroom.  It's called Bye-Bye Big Bad Bullybug! by Ed Emberly.  I'm actually pretty appalled at the positive reviews it's gotten on Amazon.  Do parents just not actually read the words on the page?  Spoiler alert - it's about a bug that's bullying smaller bugs. Does the bully learn his lesson?  Is he sorry about what he's done?  Does everyone learn to appreciate their differences and get along by the end?  Nope.  The smaller bugs get their friend - a shoe - to kill the bully.  The end.  Not joking.

I have such a bad taste in my mouth.  I don't think we'll be going back.  We were made to feel unwelcome from the moment we walked through the door, and Aidan was made to feel as though every perfectly normal bit of toddler behavior he exhibited was wrong and unacceptable.  Lighten up.  Learning is fun.  Books are fun.  Storytime shouldn't feel suspiciously like a 45 minute time out!