PurAmino - Why aren't you easier to use?

Puramino.  Oh, Puramino.

There's a special place in my heart for this product.  I'd like very much for it to work out.  When we tried it a year ago, we only had two cans, and so could only trial for three days.  But unlike the other formulas we've tried, so far, nothing terrifying has happened while on PurAmino.  And this time, we were able to get much more in the way of samples, thanks to the tireless efforts of our R.D.  I'm excited, of course, but nervous - I really don't have the time for a hospital visit right now.

Actually, what I am mostly is annoyed.  PurAmino is a 20 calorie infant formula, with deceptively simple mixing instructions:

To Make	Water	Powder	Weight
1 fl oz	1 fl oz	1 unpacked level scoop	4.5 g
2 fl oz	2 fl oz	2 unpacked level scoops	9 g
4 fl oz	4 fl oz	4 unpacked level scoops	18 g
8 fl oz	8 fl oz	8 unpacked level scoops	36 g

I'm guessing you see the pattern.  An ounce plus a scoop equals an ounce of finished product.  Easy peasy, right?  Right.  But let's say your kiddo needs a few more calories than your average bear.  You could just increase the volume that you feed - though in Aidan's case, we'd need to feed him 28.5 hours per day (you heard me) to get enough calories in with a 20 calorie formula.  Not humanly possible, next option please!

You'd probably check the can for 30 calorie mixing instructions.  After all, Neocate and Elecare has them.  No such luck.  You might also head to the product page on manufacturer's website, hoping for more detailed 30 calorie mixing instructions.  After all, 30 calorie dilution is standard for toddlers.

It took me a couple of hours of googling obscure combinations of phrases (and stumbling back across my own blog entry detailing my identical dilution quandary one year ago!) before I found this - a slightly helpful, more than slightly infuriating, piece of documentation.  WHO WROTE THIS THING?!

Here's my (hopefully not too terribly flawed) math:

We need 30 calories per ounce.  So we're only interested in the very bottom row.  We already know that 1 unpacked level scoop is 4.5g, and I use a gram scale, so that's how I prefer my measurements.

4.5g powder + .7oz water = .8oz formula
divided that all by .8 to determine that
5.625g of powder + .875oz water = 1 ounce of formula
at 30 calories per ounce, and knowing he needs 1350 calories, I multiply by 45 to get (roughly)
253g powder + 39.4oz water = 45oz formula


Redoing it in mL, since the manufacturer recommends this measurement for accuracy:

4.5g of powder + 19mL water = 23mL formula
divided by 23 to determine that
.196g powder + .826mL water = 1mL formula
at 1.01 calories per mL, and knowing that he needs 1350 calories, I multiply by 1337 to get (roughly)
262g powder + 1104mL water = 1337mL formula
262g powder + 37.3 oz water = 45oz formula


Um, say what?   Those are not the same.  After no small amount of crying and yelling at the can for not giving up more helpful information, I let the R.D. do her job.  I do not know exactly how she did this math.  I think she allowed for displacement.  And also, magic.  What I do know, is that I'm blogging this for future me to find.  In fact, I'll cross out my crappy flawed math.  Hey, future me.  Use this one!

266g powder + 38.5 oz water = 45oz formula


Once we decided to go ahead with PurAmino, we had an uphill battle with insurance.  It's an infant formula this, and we don't carry it that.  UGH!  I won't get into the dirty details because if I re-live it, I might actually have to hurt someone, but our wonderful, wonderful R.D. at CHOP worked her - ahhem - bottom off to get us enough samples to keep Aidan fed until our appeals were approved and our delivery finally arrived.  We repaid the Mead Johnson rep with these absolutely adorable pictures of one of their tiny consumers.

PurAmino - bottom line - I'll forgive your user-unfriendliness if you keep my baby out of the hospital.  Deal???

The 2014 Formula Trials - Neocate & PurAmino

After Aidan's last stint inpatient at CHOP, and my musings on feedings, I was left feeling like it wasn't Aidan who was failing formulas - it was us failing him.  We were feeding him a formula that was wreaking havoc on his little body.

Let's recap:

On Neocate Jr, Aidan did well, right up until January 2013, when we started using the "new label" Neocate Jr.  I recognize that the change of labels was not impactful for the vast majority of children, and that it's possible that Aidan's decline and the label change happening in the same timeframe may have been coincidental.  During February-March 2013, our lives were fairly miserable.  Aidan vomited almost everything he ingested.  Things came to a head in April 2013, when he was admitted to CHOP and a GJ tube was placed.  At the same time, we discontinued Neocate Jr and started Elecare Jr.  (In retrospect, I do not know why we did both of these things at once.  I truly don't.  But I was desperate to help him.)

Between April 2013 and October 2013, I scrounged up "old label" Neocate Jr from anywhere I could find it.  We didn't always have enough to have him exclusively on Neocate Jr, and sometimes had to mix Neocate Jr and Elecare Jr.  The last of the "safe" Neocate expired in October 2013, and we moved him to Elecare Jr. in October.

Exclusively on Elecare Jr fed via J tube, Aidan was frequently hospitalized for severe dysmotility, which led to severe constipation and dehydration.  These hospitalizations occurred in October 2013, November 2013, December 2013, and February 2013.

By February, I'd had enough.  I couldn't keep doing this.  I begged our nutritionist to help us.  She understood that Aidan's quality of life just had to improve.

Our first thought was to retry Neocate.  My hopes weren't super high, but I decided to go into it with an open mind.  There aren't many options, so I need to be open to trying everything.  We hadn't tried "new" Neocate in a year.  It was worth trying again.

Aidan disagreed.  What I like about Aidan is that when he fails something, he well and truly fails.  He "vomit on the floor in the nutritionist's office" fails.  I was cautiously willing to push through, but continued retching and vomiting of bile made it pretty clear that Neocate was going to be a no-go.

So back to PurAmino.  We tried PurAmino a year ago too.  The results last year were underwhelming, but we were far less desperate at the time.  All I really journaled last year was that it made him hyper and extra emotional.  We only tried it for about 3 1/2 days, because it was pretty difficult to get samples of. 

I'll post more thoughts on PurAmino soon - but after a much longer trial period, and an even longer fight with insurance, we've settled on Puramino as our formula of choice.  It does, actually, seem to make him hyper and emotional, but I think that's actually because he's in less pain.  He feels better (yay!) so he's more aware of what's going on in his world (yay!) and more easily overwhelmed and overstimulated (boo!).

He has not been hospitalized since we started with PurAmino.  We've had one very close call, about a six weeks into our trial.  The root of the problem seems to be his poor motility, and when it flares up (somewhere in the neighborhood of every 4-6 weeks), he stops pooping, is in excruciating pain, stops tolerating feeds, and gets dehydrated - all in the span of a day or so.  No real warning that this is coming - he's fine one moment and very not fine the next.  In the case of this close call, he definitely had a motility flare, but we were able to keep feeds going, so he stayed hydrated, which is the key difference between going to the hospital and staying home.

I think we're going to stick with PurAmino for now.  We're essentially out of options otherwise.  Wish us luck!

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.

Feeding Tube Awareness Week - Story Time!

Aidan and Megan did something really, really special for Feeding Tube Awareness Week!  They visited a local storytime and spread awareness the good old fashioned way!

Here's Meg, to tell you more...  

Sometimes what can be terrible about caring for a toddler is having to step outside of your comfort zone and realize, “This isn’t about me. This is about <insert child's name here>.” We are responsible for our children’s daily experiences, social interactions, and exposing them to the world – and the world to them. That is what Feeding Tube Awareness Week was all about; Aidan and exposing the world to him, to that which sets him apart from other kids, to his tube. 

Story time at the Perkiomen Valley Public Library quickly became a regular item on our “Things We Like To Do” list. Especially following the really disappointing start we had finding inviting places to go. The week we met Hillary, the volunteer who runs story time, Aidan joined the group to draw, read, do his craft, and eat a snack. Aidan ate the way he does – a little from his cup but mostly from his tube. Mothers and children looked, while trying not to stare, and asked the question, while trying not to offend. (Note: We don’t mind, really. We want you to ask. We want to tell you. We want you to understand this little boy is mostly just like your little boy but a tiny bit different.) After snack an amazing thing happened. Aidan was treated normally. The boys and girls ran and chased and kicked balls with Aidan just like they did with the others - but more importantly, mothers didn’t stop them. (We constantly find parents warning their children away from Aidan. Trust me, we get it, no one wants to be the parent whose kid breaks the “sick” kid, but that is exactly why we want you to ask.) Caroline and I looked at each other and smiled. We liked this place and these people, and we knew we wanted to be a part of it. 

As we were leaving that first day, we took some time to talk more to Hillary, who did ask questions and was a little shocked we were so excited at the normalcy. I mentioned to Hillary that Feeding Tube Awareness Week was coming up and asked if she minded if we could have the floor that day to educate these curious toddlers and parents about our life and Aidan’s feeding tube. She emphatically said yes. 

Feeding Tube Awareness Week was February 10-16 and in it’s 3^rd year. This was our first year to participate.

After saying our hellos and getting out our crayons, Ms. Hillary handed out drawing sheets that said

“G is for GROW. Draw a picture of things that grow”

Lexie drew a picture of flowers while Brody drew a picture of trees.  Aidan drew a picture of... Well, Aidan drew a picture.

Then it was circle time for our story.  Ms. Hillary did an amazing job talking to the kids in a way they could understand what can be a complicated topic - even (especially?) for adults. She talked about how little boys and girls grow big and strong by eating nutrients they can get from eating healthy foods like apples, milk, and eggs…and some of our favorite foods that aren’t so healthy, too (like pizza!!). She asked how those nutrients get into our bodies:

“We eat with our MOUTH!” answered Drew.

“Yes, we eat with our mouths,” replied Ms. Hillary, “but Aidan has a special way to get nutrients into his body. Sometimes, when Aidan eats food it can make him sick so he has a special tube in his belly that helps him get his nutrients so he can grow big and strong, too. Today, I am going to read a story about his special tube.” 

As Ms. Hillary read our story , Aidan and I passed around our Tubie Friend, Puppy Pup, and Medical Me, Baby Aidan, so everyone could see what his tubey looks like. While looking at the tubey in Baby Aidan’s tummy, Drew asked his mom, “How does it get into his mouth?” She answered that it doesn’t and that it goes straight into his belly. “How,” he asked? Then I took out a bolus feeding kit and showed him how we attach it to the tubey and where we put Aidan’s special milk. Then Drew took a turn giving Baby Aidan another bolus feed. (I was grinning ear-to-ear. Aidan was eying Lexie, who liked Puppy-pup a little too much.)

Instead of a craft we played a very special game: Pin the Tubey on the Tubie. Our Tubie, Mr. Penguin, needed help finding the right spot for his tubey so he can get his nutrients, too!!

Charlotte was our big winner!!

After our game it was snack time. Aidan sat and drank Neocate from his cup while the other kids drink their apple juice from theirs. Moms pointed out that Aidan is drinking a special milk and that is why he doesn’t eat goldfish and raisins like them but that’s how he grows. (Under normal circumstances, I would have bolus fed him but we are having difficulties with Aidan tolerating his feeds lately - which is the subject of an entirely different blog post.)

Then the kids, having seen what they needed to see and learned what we wanted them to learn, did what kids do…they ran off to play. Just. Like. Normal. 

The other moms and caregivers that came to story time were really wonderful. They asked questions about Aidan, his disorder, how he was, what we’ve been through, how he was doing,…you know, the usual stuff. Then, happily, the conversation stopped being specific to Aidan and his disorder (we are happy to talk about it but we also want people to see he’s more than his disorder and his tubey, he’s a totally awesome 2-year old boy). We started talking about keeping our children safe, people we know with some food limitations and having a new perspective on that. (I let out a deep sigh of relief.)

Kids are easy, they aren’t prone to getting stuck over things. Kids rarely question why there isn’t cake at the birthday party. It’s the parents we often worry about judging us. What are they thinking? How angry will they be at the inconvenience? Will they be mad if we have a food-free party?

I thanked everyone, numerous times, for letting us come in and take over for the day and share this with them. They responded with, “No, thank you, for coming in and teaching us.”

…then I breathed another sigh of relief.

Team Shields Feeding Tube Awareness Week 2013: WIN!

Special Thanks to Mini Buddy for giving us Puppy Pup!  And to Medical Me for Baby Aidan!  And of course to My Tubey for the wonderful books!

It's Clifford!

Last week, Aidan and Megan went down to the Museum for a very special event.  I'll let her tell you about it :)


Are you familiar with author Norman Bridwell? Yeah, me neither. But I am familiar with Clifford, The Big Red Dog whom Mr. Bridwell is famous for giving the world. (Thank you, sir, sincerely!) In honor of his birthday (Norman Bridwell's, that is), on February 15th the Philadelphia Please Touch Museum was hosting a special day in which you could come, meet Clifford, and get your photo taken with him. In preparation for the day, we learned about the color red (which is also Aidan's favorite sign these days) as well as read a few Clifford books. (I was so excited to meet Clifford that I need a plausible reason for getting my picture taken with him and my two-year old charge was the perfect excuse but I wanted it to be a little special for Aidan, too.)

Meeting Clifford the Big Red Dog went a little like this:

(show up at museum, stand in line for pictures)
Mimi: Aidan, do you want to meet Clifford the Big Red Dog
Aidan: (spinning in circles)
Mimi: Aidan, aren't you so excited to meet Clifford?
Aidan: (giggles and runs under the rope barrier, Ms. Brookie chases and brings back)
Mimi: Aidan, do you see Clifford?
Aidan: (moves head left to right <looking>)
Mimi: Right there, the big red dog? Puppy. The big puppy dog. The big Rose.
Aidan: Rose?!?!?!?! (looks excitedly for Rose)
Mimi: Yes, do you want to meet a big Rose?
Aidan: Yes! Rose!

our turn in line...approaching Clifford

Aidan: Rose! Rose! Rose! (looks up at 6 foot "Rose")
Aidan: No. No Rose.

That kid...he's smart. He knows a Rose when he sees one and he was not happy with this gargantuan impostor.

I still got my picture though.

And since it was still Feeding Tube Awareness Week we did some tube feeding while we were outs and abouts.

I love how many new fun things Aidan gets to see and do with Megan - and I especially love all of the Feeding Tube Awareness she spreads!


Also - for your viewing pleasure - the outtakes...

HOLYCRAPTHAT'SNOTROSE!

Clifford hides from Aidan

Isn't he dainty?

The Week of Azul

Quick update on how we’re doing.  I’m back at work, which means Aidan’s doing his own thing.  And to be honest, “his own thing” is a lot more exciting with Aunt Mimi than it ever was with Mama. Outings GALORE!  And oh, the PUPPIES!

Last week was Blue week – and it turns out there’s more to Blue than a certain spotted canine!  I happily watched (via text) as my toddler learned the sign and the word for “blue”, hunted through the weekly theme box for his favorite shapes and textures in the color du jour, and collaged with feathers, stickers, papers, clippings, pom poms, pipe cleaners, crayons, markers, and glue.  All in cerulean, of course.

I also learned some things I didn’t know about my son.  He loves glue and pom poms.  He thinks feathers are creepy.  And also?  He’s a master manipulator.

Okay, I guess I knew that last bit already.  But it’s easy to forget when you know someone so well and you’re with them all the time.  I know his tricks by now.  For instance, you have to be ultra clear and extremely precise with him.  You cannot simply say “keep your head down!” when you want him lying down for nap.  Because then, for instance, what you’ll get is a toddler whose head is down but whose body is up and running about.  In seriousness, that’s what you’ll get.  (Right, Mimi?)

Overall, it’s been a week of limit-pushing.  Typical Year-Dos behavior, I think, trying to see what’s acceptable and what isn’t.  (Un?)fortunately for him, Mimi stands her ground and they’re working their way to an understanding.  He’s learning so much, and I’m so happy, because that’s all I want for him.  To learn, and to love, and to be loved to metaphorical bits and theoretical pieces.

Mission Accomplished.

Introducing... MIMI!

Hi! I am Megan. (And I'm Caroline.  You know me from blogs such as this one.)  Caroline and I have spent long hours trying to figure out what words to use to most accurately explain “the situation.” We have failed miserably, multiple times, so bear with me... 

I am Aidan’s nanny. (She is that.)

I am also Aidan’s Mimi and Caroline’s best friend. (That too.)

Perhaps, I should start from the beginning. (Yes, please do!)

A few years ago, Caroline and I met at the local rock climbing gym. Through our mutual love of eating (and rock climbing), we became friends.  (She WOULD say eating first.  I swear, those days, I climbed a little more often and ate a little less often.)  Then one day, my friend Caroline brought home her little bug, Aidan, and I fell in love.  (I hope she means with me!) Over the past two years, Caroline, her husband, and Aidan have made a place for me in their family. I taught Aidan his first funny sound, which turned out to sound surprisingly like he was choking (Sorry, Caroline!!) (Not forgiven yet!). I helped identify his first major food allergy, soy, by feeding Caroline vegetarian “tacos” (Whoopsiedoodle, Caroline!) (Why on EARTH didn't we just use cow?). 

Can you believe this little chubber wubber fell off the growth charts?  Un-possible!  This was THE VERY NIGHT of the soypocalypse!

 I pondered over Aidan’s shocking change in temperament after becoming food-fed alongside Caroline and Tom. I sat through training and supported Caroline and Tom the first time they placed Aidan’s NG tube. I stayed the night in the hospital when our bug needed a few extra days after G-tube surgery. (I wouldn't have survived that hospital stay without her.  Seriously.)

In my own life, I was working as a Senior Product Development Scientist at the same company that hired me straight from college 9 years ago and aware that I needed to make a change because I was not happy. One day, as the story with Aidan and his disorder unfolded and Caroline and her worries about how to keep him safe in daycare when both parents needed to work full-time became clear, on a whim I said, “If it ever came down to it, I would be willing to quit my job and stay home with Aidan while I figure out what I’m doing next.” As soon as I said it, although I was 100% genuine in my offer, I was positive I sounded ridiculous…but here we all are.  (I knew right then I had to take her up on it before she changed her mind, or forgot that she'd offered, or she fell off a cliff or something.  This way would be so much easier than kidnapping.)

Caroline and I have a hard time finding the best words to explain our situation because we are sensitive to folks thinking I’m just the nanny or just a babysitter or that it’s a shame Aidan isn’t in daycare with a real teacher. I am keenly aware of his disorder, intimately aware of how to feed and care for him, and profoundly honored to be such a huge part of his life. He is a wonderful, loving, and intelligent boy whom I can’t imagine loving any more if he were my own son.

(In all seriousness, I feel profoundly lucky to have Megan in our lives.  The ability to go to work secure in the knowledge that my son is as safe and loved as he would be in my own arms is something that most mothers would kill for.  When Megan says she loves him like her own, those aren't just words.  She truly does, and he loves her right back with all of his sweet little heart.  We might be a strange family.  We might be a complicated one.  But we're a happy family, and very lucky to have one another!)

So as Caroline prepares for her new job I am happily decorating the daycare in our basement! (It looks awesome down there!)