The Truly Excellent GI Specialist

We saw the Pediatric GI nurse practitioner today. She was fabulous.

She is indeed the person who spent her day off last week coming over to hear about Baby E from Dr. B. She told me she'd read through all the information several times, and it was obvious she really had. She practically had it all memorized.

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She paid close attention, asked good questions, and really wanted to understand Baby E thoroughly. Some of the questions were things I wouldn't have thought to mention, but the answers provided some important clues--like the fact that Baby E has trouble swallowing certain textures without choking or gagging.

I liked the nurse practitioner a lot. She told me that the history I'd written up for Dr. B was very good and quite helpful. She feels that there are reasons and answers for what's going on, and that we should be able to help Baby E feel better or at the very least identify what we're dealing with and figure out what E can and can't eat.

As soon as we figure out what we're dealing with and what Baby E's dietary restrictions are going to be, she's going to send us to a nutritionist to help us work through food issues.

BTW, she disagreed with quite a few things the allergist said. She sees a lot of kids with multiple severe food allergies and says it's certainly untrue that a kid almost never has more than 4 allergies--she sees a lot of kids with many different food allergies.

She also said, unfortunately, that it's rare for a child to grow out of corn and soy allergies as severe as E's, although it is possible. She thinks we should have more allergy testing done (at least for the foods like rice and coconut that we suspect may be problematic) and is going to send me a list of pediatric allergists she recommends.

The one thing she did agree with that the allergist said is that Baby E probably has reflux in addition to whatever else is going on. She disagreed with his choice of medications, though, and wrote a prescription for something different.

The NP went over the naturopath's suggestions for Baby E and said that most of them were harmless or beneficial, so to go ahead and do them. There was one thing (the glyco-nutrients) that she said she'd need to see the ingredients and a bit more information on. So we're going to go ahead and do the flaxseed oil, probiotics, and a course of nystatin to kill any Candida colonization. I'll send her whatever information I can find on the glyco product.

She ordered a lot of tests--blood, sweat, stool, throat, esophagus, and upper intestines. But I didn't feel that she was just randomly throwing a battery of tests at Baby E. She took the time to explain what each one was, why she felt it was indicated in Baby E's situation, and what would be involved with it.

I was really impressed with the other staff as well. Everyone I interacted with seemed really caring and engaged.

They were experienced and knowledgeable about dealing with severe allergies, too. Several times one or another of them said something like, "Now, with our dextrose-intolerant kids we usually . . . "

Baby E isn't the first corn-allergic kid they've dealt with, and they already have procedures in place for dealing with corn and soy allergies. What a relief.

I spoke at length with the nurse in diagnostics, and she really took Baby E's allergies seriously. She seemed well-versed in dealing with allergies.

We will use plain saline for the IV and a general anesthetic for sedation, since both Dextrose and Ringer's Lactated solution contain corn-derived ingredients and the commonly used sedative Propofol is made in a soybean oil base. Since the oral Versed they usually use is in a dextrose solution, they're going to mix the IV version of plain Versed in cranberry juice for her instead.

I feel very comfortable with the clinic and the idea of having Baby E's procedures done there. They're going to do an Esophagogastroduodenoscopy (don't ask me to pronounce that!) instead of just an Upper Endoscopy, because the NP wants to look for esinophilic esophagitis and something to do with the flap at the back of Baby E's throat as well as doing a biopsy for celiac disease and checking for allergy-induced gut damage.

They drew 6 or 8 vials of blood today, and we'll have to take stool samples for a number of tests checking for blood, mucous, etc. Next Monday we have to go in for a 1 1/2 hour sweat test. Then probably on Wednesday or Thursday they'll do a Barium swallow and hopefully another swallowing test (which may have to be postponed until the next week if it doesn't work out to do both). The EGD will be another day--I'm not sure when yet--and will take most of the day with prep time, the procedure, and then recovery time.

It's a lot of tests and a lot of driving--and hour each way for every appointment. But I feel really comfortable with this clinic and GI specialist. I'm just so glad we didn't settle for the other GI doc . . . the attitudes and general atmosphere here are worlds different.

I'm so much less nervous about the procedures having them done by people who seem to care about Baby E and her unique issues, and are willing to take as much extra time and trouble as is needed to be sure they're done as safely as possible. The fact that they've dealt with similar issues helps too, and it's nice to know that they'll be keeping in close touch with our pediatrician.

I found myself thanking God for leading us to the right GI specialist as I drove home.

On another note, I'm fighting a fibromyalgia/CFS/IBS flare-up so may not be posting much for the next few days. The sleep deprivation is getting to me, I guess. Now I'm getting the insomnia and the all-over severe joint, muscle and general body pain in addition to my normal fatigue and milder discomfort.

I'm sure I'll be okay if I can just manage to get some extra rest and take it easy for a few days.