Our New Team – The Gastroenterologist

Last Tuesday, we loaded up and drove to meet with our – hopefully – new gastroenterologist.

This doctor had been highly recommended to us, and I hoped very much that he would actually be a contributing part of my boys health care.

As with any new doctor, there was a TON of paperwork to fill out, most of it redundant.  I’ll never understand why you give your insurance information when you make the appointment, reconfirm your insurance information when they call to confirm your appointment, give them the actual insurance card when you arrive at the appointment, and then have to fill out your insurance information on the “new patient” forms.  Inefficient and ridiculous.

Still, after all the paperwork was done, we got to go back to the examining room.

Both boys were weighed and measured, then the nurse came in to get our run-down.

This took a while.

I got the distinct impression she was getting annoyed with how much information I was spewing at her.  As you probably have already figured out, brevity is NOT my strong suit!  When trying to give a new doctor the “complete picture” of my sons health issues, I’m afraid I told more than she wanted to know!

But how am I to know which small detail of their story might be that little nugget of invaluable knowledge to help the doctor?

I don’t.  So, I told it all!  She can get over it.

Then the doctor himself came in.

Can I just say: instant warm fuzzies.

He talked with me about my kids, answered questions unflinchingly, never made me feel like a nuisance (a common occurance with my ‘old’ GI), and had an amazing manner with the kids.

Rather than re-cap the entire conversation (we were there over 2 hours, after all), I’ll answer the questions I had going in:

Q. Is there anything more than fructose malabsorption going on for Mr. Charm?
A. Well, the evidence speaks for itself.  He is doing well on a fructose-free diet, and that indicates his major problem is, simply, fructose.  If he stops doing well, then testing/procedures can be done to rule out or diagnose other conditions.

Q. Can we scope them now?  What other tests can we do that are necessary to see how they’re doing?
A. Scoping is mostly useful when they are reacting to something.  If they are not reacting, the results of the scope won’t tell us anything terribly useful for current treatment.  So scoping is not a ‘never’ option, but it is a ‘not right now’ thing.

Other tests would include the stool and blood tests they ordered:
Mr. Happy – 

• Fecal fat, qualitative
• Lactoferrin
• Pancreatic Elastase, Fecal
• Trypsin, Fecal
• Calprotectin, Fecal
• Occult Blood, Fecal, IA
• Urinalysis
• CBC with differential/platelet
• Comp. Metabolic Panel (14)
• Alpha-1-Antitrypsin, Ser-ua
• Reactive Protein, Quant
• Celiac Disease Comprehensive
• Ferritin, Ser-ua
• SCT
• Inflammatory Bowel Disease-IBD
• Iron and TIC
• Sedimentation Rate-Westergren
• Thyroid Cascade Profile

Mr. Charm – 

• Fecal Fat, Qualitative
• pH, Stool
• Fecal Reducing Substances
• White Blood Cells, Stool
• Lactoferrin
• Pancreatic Elastase, Fecal
• Trypsin, Fecal
• Stool culture
• Calprotectin, Fecal
• Occult Blood, Fecal

(Do I know what ALL of these tests are for?  Nope.  I copied it straight from the lab order sheet.  So Mama gots some learnin’ to do!)

He did say that children Mr. Charm’s age can’t do the hydrogen breath test, so scoping would have to be performed to definitively diagnose fructose malabsorption.   Again, he’s doing well on the diet, so not necessary to scope for it at this time.

Q. Is there anything more than FPIES going on with Mr. Happy?  Can we rule out other things, like EoE?
A. Again, the evidence speaks for itself.  Mr. Happy has presented with straight FPIES symptoms, and few EoE symptoms.  He also would have been on the extremely young side of things when first hospitalized for an EoE episode, so essentially, that rules out anything but FPIES as his diagnosis.

Q. What labs should we monitor at home to ensure he stays in a normal mode?
A. None.  Again, evidence speaks for itself.  It’s more important to know what his labs look like when he’s reacting than what they look like when normal.  Normal is, after all, NORMAL.  If it ain’t broke, don’t fix it. (Or test it, as the case may be!)

The doctor assured me that my boys look really healthy and really well (especially considering all that they deal with), due mostly to my efforts.  What he actually said was “Look at how good these kids look!  That’s because you’re watching them like a hawk!”

Sometimes I’m exhausted by the diligence necessary to keep the boys healthy, but then a doctor – who sees FPIES kids all the time – tells me that, basically, I’m doing the right thing and doing it well, and I know all that effort is worth it.

Other than ordering the HUGE number of tests, Dr. G didn’t do much at the appointment.  Before I could get disappointed or anxious about that, he said the Magic Words:

“Okay, so now I’d like you to meet with my nutritionist, and after you’ve seen her and Dr. S (the allergist), we’ll put our brains together and figure out what to do next.”

God. Bless. Them.

THAT was what we flew out here for!  Three FPIES brains willing to come together to make a “team”, and offer a comprehensive approach to my sons health care!

I dang near cried.

_________

Part II of our medical excursion to Atlanta will be up tomorrow…stay tuned for “The Blood Draw”!