I Will Not Hate Doctors, I Will Not Hate Doctors…

(I’m going to apologize in advance…this post is rather long and disjointed, but for all my editing efforts I can’t seem to improve it.  I’m still exhausted from Monday and seriously irritated and confused, and this is the best I can do.  Thanks for sticking with me!)

Riddle me this: what do you get when you put 1 toddler, 1 baby and 1 Mama in 1 car for 9 hours in 1 day?

Two really ticked off kids and one very tired Mama.

How about this one: what do you get when you combine the previous riddle with a 3 hour appointment with the GI?

One starving, exhausted toddler and one Mama SO IRRITATED SHE’S ABOUT TO SPIT NAILS!

OK, so, backing up a bit…

Monday was Mr. Charm’s scheduled appointment with the GI at the Children’s Hospital about 3 1/2 hours away (the one I jumped through hoops to get), where we were hoping that Mr. Charm would be given the hydrogen breath test to answer the question of whether he has fructose malabsorption.

I had researched, and to be prepared for that test you must eat very bland foods (white potato, white rice, white bread, chicken, turkey, water and salt) the day before the test and then you must fast completely for 12 hours before the test.

So Sunday I cooked up some plain chicken breasts and a cup or so of rice (that I had to ‘borrow’ from my mother-in-law, since I have an FPIES-friendly kitchen) and fed Mr. Charm that all day.  Then planned to give him nothing at all until after his doctor appointment. (Do you know how awful it is to listen to your toddler moan “EAT!” constantly for hours and be unable to explain why he can’t yet?  Ugh.)

I also considered that the doctor may want Mr. Charm to have the test, but they would be unable to test him on Monday and so we may have to stay the night at a hotel and be ready to test the next day.

Consequently, I packed an ice chest FULL of pre-cooked meals for both myself and Mr. Charm, along with plastic pitchers of decaf tea to drink and a bag full of ‘safe’ snacks.

Plus a suitcase with a few changes of clothes for both kiddos and one change for me, our toiletries, a few toys, and tons of diapers.

For crying out loud, my car looked like we were leaving home permanently!

Hey, as you know from my series, I like to ‘be prepared’!

So at 3:00 a.m. I was up and showering, nursing Mr. Happy, loading the ice chest, the car, getting the car warmed up, and finally dragging both kiddos to their carseats in their pajamas.

At an ungodly early hour of the morning, we were on the road.  If I needed evidence that I have a guardian angel, I got it that morning…2 hours of sleep, driving on winding, steep mountain roads in pea-soup fog, well, I’m glad I have good brakes, is all I’m going to say!

So we got to our appointment on time (I stopped and changed the kids into real clothes before we got there) and were ushered back for all the ‘weighing, history, why are you here’ stuff.  Then we were shown to an exam room.

A few minutes later a doctor came in.  Not OUR doctor, just A doctor.  She was very nice and asked me to explain what we were there for.

So I told her the whole, long story.

She said “OK”, and that she would go get our doctor now.

A few minutes later, Dr. G came in to see us.  I got to tell him the whole story, too!  Yay!  I love repeating myself!!

Here’s where the frustration started to kick in.  He agreed that there did seem to be some sort of malabsorption issue with Mr. Charm.  He even thinks it is possible that it IS fructose malabsorption.

But he’s not going to test for that just yet.

No, he wants to rule out other things first, because, you see, it’s “difficult to administer the hydrogen breath test to little one’s”.

So he took blood to check for Celiac Disease, ordered a sweat chloride test to rule out cystic fibrosis (though I told him that I’m not a carrier and therefore my children cannot have cystic fibrosis – his response? Sometimes kids can have a rare genetic mutation that causes spontaneous cystic fibrosis!), and gave me tubes to collect stool in so we can test for parasites.

Because the odds that my child, who is presenting with many symptoms of fructose malabsorption and NONE of the symptoms of cystic fibrosis has a RARE GENETIC MUTATION instead of a disorder that affects 30% of the population IS SO MUCH GREATER, DONCHA KNOW?!

And you just KNOW that a sudden drop in weight gain that stayed constant for almost two years is brought on by parasites.  Especially since we haven’t been out of the country, my child has no friends to play with, and does not attend daycare.  (Yes, I know it’s still possible, but just not as likely.)

OK, so I actually agree with testing for Celiac, although we’ve been gluten-free for 9 weeks and he has actually gotten WORSE, so shouldn’t he be improving – or at least staying stable – if it is Celiac?

Yes, I said Mr. Charm is getting worse.  His behavior is still the same, and his diapers are still full of undigested food and very loose stool, but that’s been constant.  However, he has LOST almost 3 pounds in the nine weeks we’ve been on this diet.

One might have concerns that he’s just not eating enough food (you know, that I’m “starving that boy to death”) except that I’ve tallied up his caloric intake for a few weeks now and the child is eating between 1100-1500 calories a day!  Toddlers his age (depending on the source) need between 1000-1300 calories a day.  He’s eating enough food – he’s just not getting the nutrition from it that he should.  Something is wrong.

After reading more about foods to eat and foods to avoid if you have fructose malabsorption, I’ve discovered – much to my chagrin – that I’ve been basically feeding Mr. Charm a full-on fructose feast for the last 9 weeks…onion, garlic, tomatos, bell pepper, dates, bananas, watermelon, cantaloupe, honeydew, honey, orange and coconut are ALL on the list of “foods to avoid”!

Add in some beef, carrots and potatos, and that’s basically all he eats these days!

Furthermore, after eating the bland diet all day on Sunday, and eating nothing on Monday morning, I quickly provided him with lunch as soon as the appointment was over.  He ate some more chicken and rice, but I also filled his sippy cup with straight OJ (instead of cutting it with water like I usually do) and let him snack on however much dried cantaloupe he wanted.

About an hour after lunch, he started screaming, crying, whining, acting out, his stomach was rock hard, and he soon had one of the most disgusting, smelly diapers I’ve ever had the displeasure of changing.

Tell me this child doesn’t have fructose malabsorption.  Come on!!

So we’ll await the results of the sweat chlorine test, the parasite stool tests, and the Celiac blood work, and when that all comes back negative (which I’m pretty sure it will) the doctor will surely have another game plan.

He suggested that if this is all negative we may consider doing a biopsy on Mr. Charm to check for all the different malabsorption conditions at once, which really sounds awful…but logical.  Rather than enduring who knows how many more tests, we could be done all at once.

But, still.  A biopsy?  Ugh.

WHY the doctor would not perform the breath test when he KNEW that’s what I wanted and KNEW Mr. Charm was prepped and ready for it…I mean, no, I am not a doctor, but he AGREED with me to a certain extent – what harm would it do to go on and do the test then?  Worst case scenario, it would satisfy my concerns and shut me up so we could continue to dig to find out what is actually wrong.  Best case scenario, I’m right and it answers the question right then and there.

Is it that important for a doctor to prove a Mama wrong?  Is it so horrible for a doctor to listen to the gut instinct of a Mama?

Oh, and I just loved  this part: next he spent some time telling me that I should make sure not to get “paranoid” about everything the kids eat, that he knows (because he has food allergies) how easy it is to go “overboard” about food, etc.

While he said that in a kind-hearted way, and I understand that he was attempting to comfort me and make me relax a bit, I had – and still have – a strong urge to slap the snot out of him for that!

Excuse me?  I just had the displeasure of watching my youngest son fall critically ill, spend almost a week in the hospital, only to be mis-diagnosed upon release, given a new diagnosis a week later, and then forked out over FOUR THOUSAND DOLLARS for the privilege!  I also have gotten to watch my oldest son stagnate in growth, have diarrhea for two straight years of life, and have also forked out many thousands of dollars for his medical care.

Paranoid?  HELL, YES.  Overboard?  NOT ON YOUR LIFE.

Back off, Bucko – you’re poking Mama Bear with a stick and she does NOT LIKE IT.

Oh!  And FPIES Mama’s will LOVE this one: Mr. Charm was getting antsy after spending so much time in the exam room, so the nurse brought him a pack of crayons and a coloring book.  So sweet, right?  And they let him keep them!  I was touched, actually.

On Tuesday, Mr. Charm gave Mr. Happy one of his new crayons (he loves to share with his brother) when I wasn’t looking, and when I finally noticed, Mr. Happy had been TEETHING ON THE CRAYON!  So I called the manufacturer, and yes, those crayons DO have a soy-based ingredient in them.

So the doctor who diagnosed food allergies (non-specific) and FPIES specifically in my child hands out POISON CRAYONS to his patients.

And he wants me to be less paranoid. (cue the head-slap and INCREASE in paranoia)

Now we wait to see if Mr. Happy ingested enough crayon to have a reaction, if, in fact, soy is one of his trigger foods.  There goes my happy baseline!

So, I could wait to see what the test results say, and then wait for a biopsy (or the breath test I originally asked for) and for those results, or I could do what any Mama who cares about her child would do when faced with such ridiculousness: implement a fructose-free diet for Mr. Charm and see what happens.

I’m in the process, now, of figuring out what he can safely eat, and let me tell you, it’s almost as confusing as FPIES!  I’ve found four lists, so far, that outline ‘safe’, ‘eat in moderation/try’, and ‘avoid at all cost’ foods based on fructose content, and they are not the same!  

One will say bananas are ‘safe’, another says ‘moderation/try’.  One will say beans are okay, others will point out that they may be too gas-forming to eat.

So, I’m compiling the lists, and plan to start with only the foods that show up as safe on all four lists.

Fortunately, this won’t be as tenuous a process as Mr. Happy’s FPIES trials.  Fructose malabsorption seems to show up – and disappear – rather quickly, so hopefully 2-3 weeks of being on this restrictive diet for Mr. Charm and we can start trialing foods at a rapid pace.

If his reaction after lunch on Monday was any indication, there’s no way to miss when he is reacting to fructose!

So my next biggest fear has come to pass:  I will now have to start preparing TWO meals at every mealtime.  One FPIES safe meal for me, and one FructMal (fructose malabsorption) meal for Mr. Charm.  The Geek can decide which meal he wants to eat that night!

(And have any of you Mama’s noticed that whenever you have something you dread about your kiddo’s medical issues, THAT is the very next thing you have to deal with?  I need to stop dreading/fearing things…it seems to make them come to pass!)

I still admit that I may be wrong; Mr. Charm may NOT actually have fructose malabsorption.  But I can’t stomach the thought of suspecting this as strongly as I do, and doing nothing to help him while watching him lose weight at an astonishing pace.

If I’m wrong, well, I’m wrong.   We move on.

But if I’m right?  I’ll have started helping him get healthy MONTHS faster than the GI would have made possible.

Bring it on, baby.  Mama’s got some cooking to do!

(And I feel like I should write lines…”I will not hate doctors, I will not hate doctors” until I get over this feeling of “Isn’t there anyone with an MD that will actually HELP US??  Nah.  I don’t have time for that!)

Anyone else dealing with fructose malabsorption (or any other malabsorption) that can help?  Pretty please?  With a (safe) sugar on top?