Tuesday, May 14, 2013

Food Aversions, Part 2

In part 1, I tried to explain the difference between food aversions and plain ol' picky eating.  Now to explain why this already sensitive topic suddenly ruffles my feathers so much more.  It's time for part 2, in which I describe the reality that kids will actually starve themselves. 

Last Sunday afternoon, Secora started complaining about her throat hurting.  Normally, this would not be a huge issue.  A 2 year old with a sore throat is frustrating to deal with, but nothing major.  However, we've been here before and we know that when our 2 year old develops a sore throat, she will typically stop swallowing. 


It goes something like this: the first few hours, maybe even the entire first day, she complains about it, saying "throat hurt".  We give her advil, it keeps her relatively happy.  Then, as it gets worse, she starts holding her spit in her mouth.  She won't swallow it because the pain is too much sensory input for a child who already has problems processing oral sensation.  She also won't spit it out because not wanting to be dirty is part of her sensory problems.  She holds it longer and longer and longer until her mouth is completely full and it all comes out at once.  At which point, she cries a lot over being messy, maybe takes a drink of water, and starts the process all over again.  It's very difficult to get pain medicine in her at this point, food is nearly impossible, and fluids are iffy.

So, we did what we could through Sunday and made sure we had lots of washcloths and towels around to clean up the spit.  But early Monday morning, the virus she had caused croup to develop.  Now we had a persistent, barking cough that was aggravating the sore throat and making breathing difficult.  Now she's scared.  She's also suddenly increased her energy needs because she is working much harder than she should to breathe.  By the time the doctor's office opened Monday morning, she was retracting, even at "rest".  Her first diaper change on Monday revealed very concentrated urine because she had already slacked off on her drinking.

Monday morning, the doctor gave her a shot of dexamethasone (this is a particularly nasty tasting drug that my older child was able to take orally when she needed it, but no way that would happen here).  I asked about the concentrated urine and even brought the diaper with me to show.  It was orange.  I was told concentrated urine is okay as long as she does continue to pee.  My instincts said this was wrong, but I (wrongly) began to doubt myself.

Monday afternoon, getting sips of fluid into her was a battle.  She went 7.5 hours without a wet diaper.  I've always told other parents if their child doesn't pee at least once every 8 hours, they need to be seen by a doctor immediately.  So we called our doctor's office.  A nurse told us if she was drooling, she was not dehydrated. 

Now, this is right up there with, "oh, she's just a picky eater".  This advice may be fine for a typical kid who is dehydrated from vomiting.  They will naturally swallow what little spit is in their mouth and the inside of their mouth will appear dry.  However, a child who is swallowing nothing at all will appear to have a wet mouth until they are very severely dehydrated.   We were being treated like we were over reacting and that made me doubt myself even more. 

Monday evening and overnight, she had a little bit more very concentrated urine.  She had a wet diaper around 7:30am on Tuesday.  3:30pm (the 8 hour mark) came and went with no wets.  Again, the nurse at the doctor's office acted as though this was fine as long as she drooled.  All Monday and Tuesday, she did not get up.  She didn't play, she didn't walk around.  She laid on top of me.  By 5:30 I was done doubting my instincts.  Having been severely dehydrated myself, I knew two main things: getting an IV put in sucks worse the more dehydrated you are, and being rehydrated makes you feel a lot better.  We decided maybe the nurse was right and she wasn't that bad off, but it'd be easier to get the IV now anyway.

Our neighbors very graciously took the big girls for the evening and Josh and I headed to the ER with Secora.  The doctor made not one mention of "she won't starve herself" or "just go home and make her eat".  Instead, he told us he'd look for medical reasons she was refusing to swallow and if he didn't find anything obvious (like strep throat), he was going to admit her.  He understood that we couldn't just make her drink anything.  I had mentioned the possibility of being admitted to Josh, but it still took us by surprise that it came up so soon.  I tend to be what some people call a pessimist (I prefer the term realist), so I think we both thought I was just throwing out a worst case scenario.  Well that, and we'd had a "oh, that's cute, you have a picky eater" nurse telling us for 2 days that she was fine.  An exam and a few tests later, she had no fever, no ear infection, no strep, no pneumonia, her croup was very nearly cleared (breathing easy at rest). 

The doctor explained (very correctly) that he could give her fluids and hope it perked her up, but she probably still wasn't going to drink, so as soon as she got home, she'd start dehydrating again.

We placed an IV and tried anyway.

It didn't work.

So after her pedi sized bag of saline, she was wheeled up to pediatrics, where a dextrose drip was set up and we settled in for the night.  She still refused to drink, and she still hadn't had wet diapers.  In the middle of the night, she was given another bolus of saline, which finally got a wet diaper, 24 hours after her previous one.  In the morning, the nurse came in with a pad of paper and said, "okay, I know she's an OT kid.  What does she eat at home?"  I'm used to hospitals being a bit bureaucratic and wasn't quite sure what to make of this.  I was having a hard time thinking of anything that comes out of a hospital cafeteria that she would eat. The nurse reassured me, "no, everything.  Tell me everything she eats.  We'll find as much of it as we can."

A lovely woman from food services came in with this:

That's not even all the food.  Then she stayed and talked to me about what she should bring for lunch.  She was very kind and said it was okay that Secora wanted grapes, but only purple grapes, not green grapes (which are softer).  I knew we were gonna be in good hands.  These people understood.  The doctor (actually MY regular doctor, not her's) sent in a speech therapist because they handle a lot of eating problems.  We got her drinking some again.

After trying what felt like every food available in the morning, her lunch tray was a little more focused:

Over a liter of IV fluids (most with dextrose) and about 16oz of apple juice later, I had my buddy back.  She was swallowing her spit and talking and starting to play again.

She still wasn't drinking or eating enough, so the flow on her IV was cut in half and we stayed a second night.  The next morning, her IV was disconnected completely to give her a trial run of being on her own.  She was finally drinking enough to maintain hydration and the deal was that if she ate lunch, she could go home in the evening.  She didn't eat. 

It was decided to discharge her anyway in the hopes that she would do better at home, where everything is familiar.  She still didn't eat. 

And now we've been home for 4 full days and she still isn't really eating.  Before this happened, she took in at least 1,000 calories a day in solid foods.  Now, she's anywhere from 300-500 calories of solid foods.  That doesn't come easily either, it takes offering a lot of different foods and constantly telling her "take a bite" to get that in her.  She is back on pediasure to make up the difference.

To get back to where she was, she needs to be working with an occupational therapist (who handles the sensory aspect) and a speech therapist (who handles motor problems that hinder swallowing and any behavioral component) again.  Our insurance considers these therapists specialists, so we pay $45 per visit and it's quite likely she will be going two or three times a week for a while.  The amount of pediasure she's taking right now costs about $75/month.   All together, we're expecting at least an extra $500/month in medical bills for her for the foreseeable future (not counting the hospital bill that we haven't gotten yet). Obviously, we will re-work our budget and get her the help she needs.  But I'm definitely not thinking to myself, "yay, we have a picky eater and get to pay for therapy!" 

She spent three days in the hospital, she lost about a year of progress, she's getting half her calories from pediasure (and still running short) and she needs therapy precisely because she is NOT a "picky eater". 

So next time you're at a restaurant and see parents you think are being too permissive, consider that maybe there is more to the story you don't know.  Just because the kid is allowed to eat nothing but french fries out in public doesn't mean they aren't working their behind off at home.  Maybe the family is just wanting to grab a quick meal in peace.  Maybe they're even purposely being considerate by trying to avoid a meltdown.  Maybe the child is primarily on a liquid diet and they're thrilled s/he is eating anything at all.  You don't know.  So don't assume.

3 years ago, I didn't get it either.  We knew a girl who wore clothes 2 sizes too small and only ate cheetos (in public, anyway).  I ignorantly assumed that a child who could handle cheetos could handle anything.  I didn't know.  I didn't understand that sensory-seeking kids may need tight clothes to help them stay regulated, and can prefer hard, crunchy foods with strong flavors.  That's the catch-22 of this situation.  You work so hard to make progress and then you hit that no man's land where the kids are acting just "normal" enough that people start thinking you're a horrible parent who's just too lazy to make them eat something different, or buy clothes that fit, or let them get dirty.  No matter how thick your skin gets, that hurts.  It hurts to spend so much time and effort helping your child and then be presumed lazy.  It hurts to think of how the child might be treated as they get older by unsympathetic adults or mean kids.  A little understanding...even just enough to stay quiet and not comment at all...goes a long way.

1 comment:

Karen said...

I can't imagine how hard this was for you. Conner has sensory problems with his food and he is growing out of some of it, but I can't tell you how often I was told, "Just make him eat it, he'll eat when he gets hungry enough." That never happened and I would be a terrible mother if I didn't at least try. For a long time he would only eat a specific brand of chicken nuggets, quesodillas on wheat tortilla's and brand specific cheese sticks. Now we're up to maybe 10-12 different foods he will eat, but still brand specific. I feel for you and hope things get better


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