Cooper's GI specialist visit - LONG update

Over a month ago our pediatrician recommended that Cooper be evaluated by a pediatric GI specialist. There are very few doctors in this specialty so the quickest appointment I was able to get was more than a month out which at the time seemed like forever. Well, today was our appointment.

I prepared for the visit last night by reviewing my detailed feeding/diaper/behavior log that I've been keeping since Cooper's birth and wrote a summary of key dates, diagnoses, and medication prescriptions and changes. While writing my summary I felt so proud that I had all this data to refer to and realized that if I didn't have it I would be clueless about the key points that I just knew would need to be discussed at this appointment.

It was a great morning - Cooper woke up crying and hungry so I fed him while trying to figure out how I'd survive getting a shower and getting dressed and ready without him freaking out because these past few days he's not been happy about me putting him in the swing to get things done . However, as Coop finished his bottle I noticed he was nodding off and I thought maybe, just maybe, I could sneak him onto the swing once he was asleep. Got him on the swing in our bedroom, buckled him in and his eyes opened wide. Darn! He flashed me a big smile and closed his eyes and drifted off to sleep! yay!

To my shock and relief I was able to take a shower and even blow dry my hair (which NEVER happens these days) and when that was done I found Cooper still asleep in the swing and Hunter laying on the floor in front of the swing guarding him! I grabbed the video camera and took some video of my sweet pup guarding my precious sleeping baby. :) I was certain that I had just a few minutes before Cooper would wake and cry to be picked up so I rushed around and got dressed. He was still asleep! So I rushed around and got a TON of stuff done - frantically picking things up, putting things away, assuming he'd be up any second. When all my critical chores were done I returned to the swing and he was still asleep so I hopped back onto the bed turned on the TV and sipped my coffee. By the time Cooper woke up he'd been in that swing sleeping for 2 hours! (thank you thank you thank you Sleep Fairy!)

He got up, I fed him again, changed his diaper, put clothes on him, buckled him into his carseat and off we went on our way to Tarzana - about 25 miles away - to meet with Dr.E. Cooper was weighed (and I forgot to ask what the weight was since the nurse just jotted it down and didn't say it out loud - I'll call in the morning to find out), and measured - 23 inches! The doctor then invited us into his office to discuss Cooper's history and our family medical history. While we talked, Cooper refluxed and Dr.E heard it from across the desk (good timing, Coop!). Dr.E was interested in family history of major illnesses, reflux, and colic. After I shared our history, he explained that Cooper had several risk factors for both colic and reflux and he explained his theories about the two conditions in infants and his approach (which is conservative). We discussed online sources of research I've found and he gave me his perspective on them which I was happy to hear as it was similar to mine (I'll refrain from details as I don't want to discredit or invalidate theories/resources that are widely regarded and followed in online support groups for parents of babies with reflux.

After the medical history discussion and a review of the doctor's overall philosophy on treating reflux in babies, he brought us back to the exam room and did a thorough external examination of Cooper and once that was done he brought us back into his office to discuss his findings and proposed game plan.

Findings: Cooper definitely has reflux but he's reluctant to label it GERD (this is due to his philosophy about infant reflux and it's over diagnosis and over treatment) because Cooper's case is not severe in that it does not cause apnea (thank goodness) and has not prevented him from thriving (weight gain and overall strength/growth) and has been responsive to standard medical interventions (Zantac and now Prevacid). He acknowledges that Cooper's case of reflux did/does warrant/require medical intervention unlike the majority of infant reflux cases (by the way, 40% of all babies have reflux but only a tiny fraction of them require medical intervention). Although Cooper was/is thriving, the acid reflux caused him intense distress (screaming for hours and through feedings), indicating that the acid was burning his esophagus because Cooper doesn't spit up very much and instead swallows the acid and formula that comes up. Once medicated with Zantac, the damage healed and the burning stopped (at least as long as the dose was effective).

Dr.E concurred with the pediatricians that Prevacid is the right medicine for Cooper given his history/trials with Zantac, and he recommends continuing on the current dose for 4-6 weeks and then he wants us to start tapering Cooper off of it to try to see if he can go without medication since these medications are not without a long-term cost which is not yet known. Unfortunately, this medicine is not yet approved for use in infants and off-label use such as this does not require physicians to report any or all side-effects so there isn't any data to look to for long-term safety so it's best to not keep him on it if it's not absolutely necessary. He wrote down instructions for how to taper him off of it. If all the symptoms return in full force then we'll reintroduce the medication so we'll need to be patient and cope if this should become necessary. In the long run it's better for the baby to not be on the medicine unnecessarily so I'm OK with this.

Dr.E found no evidence of a milk protein allergy since the stool sample tested negative for blood when we had him tested at the pediatrician's office and in today's exam and discussion Dr.E felt there was no other evidence of an allergy (examples of other signs include eczema, "ring of fire" redness around the rectum) and therefore we can take Cooper off of the Alimentum formula (which is intended for babies with colic due to milk protein allergy) and start him on a new formula. Our choices were to either give him one of the two available formulas that have a thickening agent in them (Enfamil AR and Similac Sensitive SR), or pick a different formula and thicken it with cereal. Dr.E said we should have been advised to try thickening the formula much earlier because doing so apparently reduces the occurrence of the reflux action by weighing down the food in the stomach, making it less likely to shoot back up and out. He said we can gradually cut the new formula into the current formula over the next few days, or if we wanted to just cut straight to the new one we could do that. We're going to do it gradually - tonight and tomorrow his bottles will have one-third of the new formula and two-thirds of the Alimentum then after a couple days like that we'll go half and half, and so on. Doc says that once the transition to the thickened formula is completed he thinks that Cooper will reflux less often and therefore will have less of a need for the medication.

Dr.E thinks that Cooper's mid-cycle snacking is habitual and not out of true hunger and suggested I work to retrain him. He said the AR formula or formula thickened with cereal might fill him up more and for longer but if not then I need to be patient and try to distract Cooper with things other than a bottle when he fusses soon after a feeding - to try to get him to go longer without and then he'll be more likely to start taking more at his regular feeding times/intervals.

Last, but not least, Dr.E wants me to STOP logging Cooper's feedings, diapers, etc. He said I'm "medicalizing" the situation and playing the role of nurse and patient rather than mommy and baby. I explained to him that the colic and reflux means there is no healthy sleep happening for this momma and that I have a severe case of momnesia (short term memory impairment) so the log helps me predict when Cooper will need to eat again, and helps me see trends and issues and know when things went well (and why) and when they didn't. He wasn't buying it and suggested I stop doing it. Well, I've discussed this with Bob and he agrees with me that I should continue doing it as long as I think it'll help us track Cooper's progress/issues as well as help us try to predict and address his needs. I expect I'll taper off of doing it not long after returning to work since the daycare won't log the level of details that I do and that's OK with me. Bob sweetly said "Doc doesn't need to know you're still doing it when you go back for the follow up." =)

Next steps: Proceed with current dose of Prevacid for 4-6 weeks and then start tapering off, proceed with formula change, call Dr.E in one week with an update, return in 2 months for a follow-up exam/visit.

So that's it (I think - I'm too tired to pull out my notebook to see if that's everything) - for now. Thanks for "listening" if you've gotten this far! ;).