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!

Autism Awareness Month

April - Autism Awareness Month - is over.  I was quiet - curiously quiet, I guess.

It isn't like me, I know.  Me, who wears my Feeding Tube awareness swag with pride.  Me, who could write novels on Food Allergies, Eosinophilic Disorders, and Feeding Tubes.  I never miss an opportunity to educate and strive to make our normal everyone else's normal.

So why the radio silence?

Aidan's diagnosis is fairly recent, I guess.  Fall 2013.  And I feel like I spend a lot of time justifying everything.  If he has a good day, he must not really have Autism.  If he has a bad day, "he's just being 3."  It's frustrating - going through the process of having your child diagnosed on the Autism Spectrum is neither easy nor fun, and having to defend that diagnosis to teachers/friends/relatives/therapists/strangers is exhausting and unhelpful.

The odd thing is that it's not even strangers that are the problem.  It's the people who love us.  Who love him...  People who think they're saying the right things.

I've read lots of very good blog posts on what not to say to a parent of a child with Autism.  Some of them ring so true that I might as well have written them myself.  But he looks so normal.   (Were you expecting a third arm?)  You really should take some time for yourself.  (Sounds great - are you offering to take my son to Physical Therapy/Occupational Therapy/the Hospital, or sit up all night with him so I can take some of this glorious me-time?  How about going to work full-time for me?  No takers?)  You should try this diet/pill/probiotic/voodoo.  (Thank you, Doctor.  I'll file that feedback away.)  Do you think it was caused by <fill in the blank>?  (Just... no...)

I shouldn't have to convince you that my child has Autism.  Who would make this up?  Why?  I'm going to have to give you the benefit of the doubt here, and assume that you are struggling because my son isn't what you picture when you hear Autism Spectrum.  My advice?  Get a new picture.

Maybe you've heard someone say "If you've met one person with autism, you've met one person with autism."  It's true.  Really.  I like the below graphic, because it breaks down the so-called "Triad of Impairments" that doctors look for when diagnosing an Autism Spectrum disorder.  I don't love calling them "Impairments", but the sake of easy conversation, I'll go with it.

I think people tend to understand the "big picture" ones - but can't really make sense of what it might look like in a life that isn't Rain Man's.  Here's what some of these look like in our day-to-day life.

Impairment in Imagination - The other day, we were at Gymboree, and there was a setup that was made to look like a bus.  It was an elevated platform with two big inner-tubes tied on as wheels - most 3-year-old boys in the throes of a perfectly normal love affair with all things automobile would have had little problem recognizing that as a bus.  Aidan wandered the entire room, carefully searching for the bus, eventually saying "I don't see it, mommy.  There's no bus."  I asked him to try again, it might not really be a bus, just something that looks a little bit like a bus.  No dice.  Nothing but a bus is a bus.  There are no almost buses.  No kind of buses.  No pretend buses.

Another example - find Aidan drawing with crayons on paper.  Ask him what he's drawing.  He'll be happy to tell you, quite literally, what he's drawing.  Answers will sound something like this: "Green." "Crayons." "Paper." "A line." "A circle." "Two dots." - and so forth, until he feels confident that he's given you the answer you're looking for.  He's not trying to be difficult.  It just wouldn't occur to him to say "A rocket ship!" or "a house", even if that were the final product he was working toward.  He'll tell you exactly what he's drawing or drawing with, right then, in that moment.

I could go on and on here because this is probably the biggest problem area for Aidan right now.  One final example - and I do know how odd this sounds - Aidan has to be taught to play.  You heard me.  Put a child in a room with toys and he'll play, right?  Not necessarily.  Some children don't instinctively know what to do, and Aidan is one of them.  And because of the aforementioned problem with "kinda sorta the same", every new toy or game is a whole new experience and a new thing to learn.  We've learned to stack blocks to make a tower, but another child at school wants to line them up to make a road.  EMERGENCY!!!  Aidan doesn't know how to play that.  It takes patience, and a lot of guessing at what the other kids are playing now, but eventually I think he'll have abroad enough repertoire that he'll feel confident enough to join in when he wants to. 

Impairment in Social Communication - If you have a typical child about Aidan's age (nearly 3 1/2, however that happened already), you'll understand why this is atypical.  Aidan doesn't talk just to talk.  He's not a conversationalist.  He's made some pretty big strides with his speech therapist lately, and is now mostly using full sentences to respond to us or request basic needs, but spend time with a typical child of this age and you'll realize that his lack of desire to chit chat is, well, different.

There are up-sides - a quieter house being just one.  He is never - literally never - consciously mean or hurtful to another child.  He doesn't have the desire for social interaction that you'd need for bullying or teasing, so what we're left with is just a fairly pleasant little boy who mostly just wants to keep to himself.  

With the help of his therapy team, we are working hard to encourage more communication, especially social communication, but he often just doesn't know what to say.  This is where he pulls out his scripts.  Aidan can recite the scripts from any of about 50 episodes of Bubble Guppies, and probably more episodes of Blue's Clues.  What really amazes me though is that it's not just rote memorization.  He listens, he watches, and he assesses.  Then he stores these snippets of social interaction away for later, and brings them out when they would be contextually appropriate.  If you ask him questions about getting his hair cut, he may need a moment to think, but he'll launch into the script from the Bubble Guppies haircut episode pretty quickly. I think that's impressive!

Impairment in Social Relationships - Ahhh, this one is hard.  The most obvious issue here is that Aidan has to be taught how people feel.  I didn't expect this.  I guess I assumed everyone could look at a crying child and know that he was sad.  Or see a laughing child and know that she was happy.  But actually, I found that Aidan was using the tone of our voice when we asked how the child was feeling as his cue.  If I sounded sad when I asked, he would respond that the child was sad.  If I sounded happy, the child must be happy.  We've done a lot of work here and now, he can usually correctly tell whether someone is happy, sad, scared, or angry.  More importantly, he can occasionally tell me if HE is feeling happy, sad, scared, or angry.  

The bigger issue, since we're talking "impairments" is that while Aidan enjoys and seeks out attention from adults, he really doesn't enjoy or accept children as playmates.  I'm not sure why - maybe they're too loud, or too unpredictable, or too sticky (all totally valid reasons, IMHO) - but what we've found is that when strongly encouraged to engage in play, Aidan does have fun, he just doesn't seem to know how to initiate or sustain social contact.  Most children seem to come by this skill naturally at his age - he just needs to work a little harder to make it happen.

Sensory Difficulties - I'd actually like to give these a post all their own.  Stay tuned for that in the next week or so as I have time to jot down some thoughts. 

Anyway, If you mean well, and you love someone who is on the Autism Spectrum, please - think before you speak.  All of the things you want to say probably come from the heart, but if they also come from a place that assumes that Autism is something terrible, and if we can only find a way to believe that the diagnosis is wrong, everything will be okay - please keep them to yourself.

I love my son.  I'm proud of him and I wouldn't change a thing.  I absolutely love the way his mind works and I'm genuinely excited to see how his personality unfolds.  This graphic from The Little Black Duck is a great example of how much work he's doing all day. 

Aidan's Autism isn't a problem to be solved.  I'm not desperately hoping for a cure.  We're not trying to "Defeat Autism Now!"(And no offense to those who are on that journey - honestly.) 

We are a family with a little boy who is built a little bit differently.  We spend a lot of time trying to understand him and meet him where he is, instead of dragging him to us.  We have a lot of help in the way of therapists, doctors, and internet friends that we may never meet, but know more about him than most of our family members do - but it's hard.  It's very, very hard.  We scream at each other, we cry, we feel helpless, we feel hopeless.  We don't mean to cancel our plans last minute, or to ignore your text messages.  We probably even genuinely thought we returned your phone call.  It's a crazy life that we didn't realize we were signing up for, but here we are.