Feed Frustrations

It's been about a year since we lost the use of Aidan's stomach.  We don't know exactly why it happened. 

In December of 2012, we fed Aidan exclusively via G-Tube (into his stomach).  By January, he was vomiting everything we fed him.  Through February and March, we tried different Formulas and different feed schedules and different rates.  At the end of March, Aidan was admitted to the hospital for IV fluids and tests.  A dye study confirms that the tube is in place.  A Gastric Emptying Study was fairly traumatic, and gave us no additional information - probably because Aidan couldn't keep the tracer down.  No doctors gave us any answers, but a GJ-Tube was placed in hopes that if we couldn't fix Aidan's stomach, we could at least avoid it.

The stomach problem was never solved - just brushed aside.  It has always nagged at me.  Why does a stomach work every day of a child's life, until the day it stops working, and never works again?  What caused this?  How can we expect a food trial to be successful - ever - without a functional stomach?  Did this have something to do with the formula change?  Nutricia will argue that nothing happened until they're blue in the face, but Aidan's stomach worked before the formula changed, and never worked again afterward.

So here we are.  Over the past six months, Aidan's been hospitalized for some awful things - severe constipation, feed intolerance (even through the jejunum), intussusception - things just aren't going well for him.  GI agreed that something seemed amiss and felt that it was (finally) time to revisit the stomach problem.

The orders were to give 1-2 ounces by G tube once or twice per day.  And what???, I asked.  "And we'll see what happens."

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 - A Week of Elecare

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


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

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

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

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

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

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



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

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

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

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

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


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

Neo-Gate 2013 - Steps forward (?)

You can find the beginning of the Neocate saga here -


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

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

Then we waited.  And it didn't help.

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

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

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

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

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