What to expect from a pH scope for reflux
Updated: Feb 23, 2019
Sharing our experiences of Lexi's pH scope at 7 months old to determine the severity of her silent reflux.
Lexi has been battling with silent reflux since she was born, you can read our story so far here or my tips for breastfeeding moms with reflux babies. Recently we went for a scope to see what was really going on and I wanted share our experience to let other parents know about this option. Again, this is written from a South African perspective, but most of it should be relevant to anyone.
After changing meds, and a few weeks of solids, 3 times a day, our nights were getting worse and worse and Lexi was still struggling to sleep past 4:30 so I decided that I would go and see the paediatrician and check in with him. The closest city is 2.5 hours from us which is why I haven't been sooner.
I ended up seeing Dr B, the partner of our usual paed, Dr A, who has been prescribing the meds over the phone. Dr B was not very impressed that we had been giving Lexi PPIs for so long without a checkup. He said that by this age (8 months), it's hard to know what is behavioural and what is reflux and he suggested doing a pH scope. He said that if he could, he would do one on every baby with reflux in order to get a clearer picture of what was going on. He said that it is far more traumatic for moms than for the babies. I was quite nervous, but also really keen for a clearer idea of exactly what was going on and a definite sense of hope that we may being seeing the tail end of our reflux story.
We are only on a hospital plan and so I always assume that things like this aren't covered. Dr B said that medical aid would cover it because Lexi would have to spend 24hours in hospital. Unfortunately our medical aid didn't agree but after countless phone calls back and forth with the hugely frustrating call centre, Dr B eventually got on the phone with a manager and worked his magic and they agreed to cover it if we paid a R1100 co-payment. Lesson learnt: if you hit a wall, get your doctor to deal with the medical aid.
Although I have read that some doctors allow patients to keep taking meds during the scope, and read the results with that in mind, Dr B said that in order to see proper results, we needed to stop meds, there and then, cold turkey. I was terrified as I had read about parents skipping one dose of meds and regretting it for days. I skipped her meds and waited with baited breathe for an awful night but it was fine! And so was the next day. And the next. I started to think that perhaps she didn't need to be on meds after all. Big mistake...
The observation took place in the NICU unit of the hospital. We checked in early in the morning and were given an introduction to NICU. Wash your hands often, no cell phones as they carry germs, no looking at the tiny babies! We had our own room but it was designed for prem babies so it was full of scary looking equipment, the bed was tiny and clanged every time Lexi rolled over, and the 'bed' provided for moms is actually just a pull out chair with an extra pillow. The reason the procedure takes place in NICU is not because it is dangerous, but rather because there are more nurses available.
The way that the reflux is monitored is by inserting a probe into the baby's nose and down into the oesophagus. It sits just above the stomach and measures the pH of the oesophagus and the number of times the baby refluxes. The nurses and doctor wrapped Lexi up in a towel to keep her still and then inserted the catheter into her nose. I was encouraged to stay outside. When I came in she was red in face and gagging. I got quite a fright, but after coughing up a bit of spit, she calmed down and slowly started to get used to it. The catheter up comes out of her nose and is taped to her face and head, and then goes down her back and connects into an electrical monitor. Lexi is really mobile and busy so I couldn't hold onto it the whole time. Luckily I had packed tights for her to wear so I could tuck the monitor into her tights.
After the catheter is inserted, we had to wait for the x-ray machine to do an x-ray to check that it was in the correct spot. It needed to be 1.5cm further down, which entailed a bit more pinning down and crying but was over soon.
From there, we just had to do life like we normally would but I had to take notes about what was happening. When Lexi was feeding or sleeping, I had to push certain buttons on the monitor to record that, and then I had to take notes about any symptoms I noticed (arching, coughing, crying). The monitor actually showed her pH levels in real time which was fascinating to see. After 7 months of wondering what was going on in that tummy, I could finally see! Remember that anything below a pH of 4 is considered acidic. Although Lexi's pH dropped quite low sometimes, I was surprised that is was close to neutral most of the time, or so I thought. There were some moments where it went to 2 or 3 but they were not often. It was her fourth night off meds and she slept so well. Unfortunately she woke up at midnight and her catheter was out so I rushed out to call the nurse and we had to hold her down and insert it again which was not fun for any of us.
I was convinced that the doctor was going to tell me it was time to stop the meds as Lexi's reflux wasn't that bad. Unfortunately that was wishful thinking. The nurses removed the probe and took the micro-chip out of the monitor. They upload the data to computer, and then recorded the notes I have taken, and the results are printed off for analysis. Amongst lots of lists and numbers, there is a graph showing acid levels and reflux episodes over the 24 hour period. Dr B's analysis was that most of her symptoms correlated with reflux episodes (97%) and she had refluxed 37 times in 24 hours and it was quite acidic so the doctor wanted her back on maximum meds. I was so disappointed and confused because she had been doing so well off her meds for the past few days.
Why weaning is important
What I didn't realise is that once you stop the meds, the stomach contents become more acidic but the oesophagus is healed and healthy so it can handle it for a few days. As the days go on though, the acid wears down the tissue and starts to create more pain. It usually takes about 5 days to see the symptoms again. This is how one of the moms on a reflux support group described it: "Her esophagus is currently healed, it's like wearing the wrong shoes. For the first couple of hours there are no blisters, then it starts to wear on the hot spot. It used to take 2-3 days from baseline for us to go from good to hell. That's why you wean slowly, reducing doses and then dropping them little by little- this is like breaking the shoes in wearing them for a little at a time." By the time we left the hospital, the metaphorical blisters were starting, Lexi cried for almost 2 hours straight in her carseat and barely slept a wink. As soon as we got home we started her on her meds again but a week later we still are still trying to get back to baseline.
So what now?
Well part of me feels frustrated that we went through all of that and have ended up in exactly the same place. But the other part of me is really glad that we now know exactly what is going on and so does our paediatrician. Now I know that Lexi's symptoms are not just behavioural like a lot of people implied, or just my imagination. And now we just hope and pray that it ends soon.
Edit to Add
Lexi eventually came off all meds at 2 years old. She still sometimes refluxes or chokes a little bit but is doing great off her meds, and we knew it was right to keep giving them to her after seeing the scope results.