I’ll start with the good news … even though we were told that there was virtually no chance Jordan (now 12 weeks old) wouldn’t have severe reflux and food issues like his sister, I really haven’t seen much evidence of either of them. He reacts a little to a couple of foods (tomato, spicy foods, etc) but that’s pretty common, and while he vomits constantly he doesn’t seem to be in pain, and on the odd bad day, we just use Mylanta. Plus he’s thriving at about 7kg!

Belle’s issues were a little more complex, but she’s a bright, bubbly and very energetic little girl and coming up to 3.5 years. She stopped feeding altogether between about 5 and 7 weeks of age, and was tubed at 7 weeks. We were told it would be for 48 hours, but we ended up tube feeding for 2.5 years. After a year on the NG tube, and lots of admissions, they did a couple ofoperations to set up a PEG and then Mic‐key button [low profile tube].

She had such issues tolerating feeds that at one stage we were tube feeding over 20 times a day. She was diagnosed with GORD, CMPA, infantile anorexia, multiple food allergies/intolerances, allergic colitis, Sandifer’s Syndrome, etc, and is still considered FTT as she has never made it back on the weight chart. They won’t remove the PEG until she has been 25th centile for 6 months, so she will probably still have it at 50! LOL

The tube weaning was very stressful ‐ we had support from the hospital and used the Graz (Austrian) model, but basically it involved stopping her feeds cold turkey, supported by a couple of years of feeding therapy clinics and getting child psychs involved, and while her eating is still very average in terms of both quantity and range, and her weight hovers around 10 and 11kg, her development hasn’t been affected at all, and we are very grateful for that. And, she has outgrown nearly all her food allergies/intolerances. We continue to try to reduce her Losec, and I’m sure will have success one day.

Interestingly, my mother in law now believes both her kids had reflux, as they had similar issues to Belle. In those days though, they removed the tonsils from both of them and thought that would do the trick!

Jess is a long time RISA member, admin member and contact. She lives in Brisbane.
You can contact Jess on the RISA forums – username: jtovey