FPIES and Nature Apparently Don’t Mix

On Monday I talked about Zac’s ongoing FPIES reactions, and how he’s had some “unidentifiable somethings that LOOK like they might be food, but really, I don’t know” in his diaper that were our only clue as to what might be causing his current acute/chronic reactions.

And we really did have no idea what they were!

Tuesday evening he was happily trying to eat something off the carpet and I stopped him.  After wrestling it out of his cute little hands (that kid is strong!) I had a weird moment of pictures flashing through my head:

the windshield of my car, covered in buds fallen from our Bradford Pear tree…
the wind blowing through the tree, and buds falling around us as we walk into the house…
his diapers, so scary and sad looking, with those strange, seed looking things partially digested…
Darrel’s boots caked with mud and tree buds…

and I looked down at the tree bud in my hand and knew we had found the culprit.

My son is having an FPIES reaction to a tree bud.  

Seriously?

UGH!

To be sure, I asked on the FPIES boards and several Mama’s said that, oh  yes, their kiddos react to Nature in FPIES ways.  Sand causes vomiting to bile, chewing on a twig brought a week of diarrhea, leaves are a known FPIES trigger, etc.  Even our new GI said it sounded “logical and plausible”.  (Our allergist hasn’t responded to my email yet.)

So not only can my son not eat FOOD, not only can he not chew on ART SUPPLIES, not only does my HAIR make him sick, but now FLOWERS will aggravate his intestines?

Seriously…how do you protect your teething 10 month old from everything unsafe for him when his sole purpose in life is to investigate the world around him with his senses – which includes taste?!

I don’t have an answer to that, but it is good to finally know what is causing the reaction.  Now we know what else  we have to be vigilant about.

And it seems that floor cleaning is paying off: yesterday he had no poopy diapers at all, so he appears to be on the upswing…again.

Meanwhile, Jed was doing great; passing food trials right and left, advancing in speech therapy and meeting milestones, and being his naturally sweet, charming little self.

Then I had to go and be clever, and make the “Vegan” Creamy Chicken Soup.  He and Darrel ate it for dinner Monday night, and within three hours, he had a horrible diaper.

He woke up Tuesday on the wrong side of the world (my exaggeration of the old “woke up on the wrong side of the bed” phrase) and was an absolute NIGHTMARE the whole day!

He was a pill yesterday morning, too.  At speech therapy on Monday, he met milestones, mimicked beautifully, and said all but 5 words in the “name the object” game they play.  At his session on Wednesday, he refused to do nearly everything she asked of him, wouldn’t say words he knew, reverted to using gestures instead of words to request things, and in a moment of frustration called his therapist “Mean” and tried to hit her.

That got him a time-out.

The thing is, Jed LOVES his therapist.  I mean, REALLY LOVES HER.  Last week he cried when we left, sobbing her name!  He even refused to tell her which ‘reward’ toy he wanted for being so good in therapy because he KNOWS that after he gets his reward, he has to leave.  In perfect 2 year old logic, if he didn’t take the reward, he wouldn’t have to leave!

So for him to call her names and try to hit her is extraordinarily bizarre behavior for him.  

Everyone who knows Jed that has heard me tell this story has been shocked and appalled that he did that.

Except for Darrel.  

Because he, like me, has been living with Jed for almost three years and is keenly aware of the effect fructose has on our son.

It’s as if he is possessed; he’s out of control and not happy about it.  He feels awful and takes it out on the rest of us.  He’s not himself at all.  

In a strange way, though, I’m glad he’s shown this side of himself to his therapist.  It’s easy, when dealing with a pre-verbal child, to blow off these behavior issues as “oh, he’s two”, or “I’m just a rotten mom that doesn’t know how to handle her child”, or “we must be imagining things”.

For his therapist to be properly horrified by the sudden 180 in personality lends credibility to what we believe and know to be true: Jed can’t handle fructose, and his major symptom is behavior issues.  (Believe it or not, some people in our world still don’t actually think this is a problem for him!)  It’s nice to have an independent, unbiased witness attest to these facts.

So we left therapy, and Jed continued to be a rotten little kid…until 2 p.m. when his brain flipped a switch.  Suddenly, Jed was back.  Normal Jed.  Non-fructose laden Jed.

He was sweet.  He was affectionate.  He was conversational.  He was charming.  He freely offered hugs and kisses to everyone in his family.  He played nicely with his brother.  He used table manners.  He didn’t argue about everything.  He was NORMAL.

So it apparently takes about 36-48 hours for fructose to completely stop messing with his system, and once it’s gone, it is gone.  Fast.

I’m 100% sure it is the soup because he refused to eat any for lunch on Tuesday, though he begged for “FOOD!!  EAT!!” He was hungry and wanted to eat, but did NOT want to eat the soup.  

That’s usually a sign that he knows the food in no good for him.

So, time to troubleshoot.  We know he’s okay with coconut milk.  We know he’s okay with onion.  The only new ingredient was carrots, which, according to the Mayo diet, are okay to eat.  However, I’d read in other Fructose Malabsorption diets that carrots were high in fructose and they should be avoided.

So it seems that either he cannot tolerate carrots, or the combination of coconut milk, onion and carrots was too much for him.

So now we’ll give him some carrots and see what happens.  If he reacts to the carrots, then we have our answer – no carrots for him!  If he is okay with them, then we’ll try the soup again, but without the carrots.  If that’s okay, then we’ll pretty much know it is the combination of those things that is no good for him.

So, big sigh…we have Jed back!  And Zac seems to be on the upswing!  And we know what to look for to keep Zac from getting sick again!  And we have a plan for figuring out what exactly set Jed off!

Stick a fork in me, y’all…’cause after this week I am done!

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You’ll want to come back tomorrow, because I did it!  I managed to make dairy, egg and fructose free chocolates AND safe gummy fruit snacks to put in Jed’s Easter basket!  I’ll have both recipes and pictures for you on Friday!

I’m happy dancing. It’s just hard to see my moves when I’m sitting in my chair. I am tired, y’all!  See you tomorrow!