Hi, I'm new!

[Dom&O]

Hi everyone, I'm new here...I just wanted to take a second and introduce myself. I'm Hayley, mom to Owyn (7) and Dominic (1). I live in NC, and in the very near future we are moving to NJ so I can go to nursing school.

Dominic had severe GERD as a baby. We still treat with meds, and due to the reflux it has caused him to refuse food. I EP for him and he currently drinks 42 oz of EBM a day. The good news is he's growing and gaining weight. He sees an OT once a week, a nutritionist once a month and a team every three months. We've contacted a feeding clinic and have an evaluation with them later this month. Their waiting list is about 6 months long so if he is still refusing food by then we have that backup plan in place so he doesn't need to get a feeding tube.

Thanks for letting me be apart of this board!

[askew]

[BookGoddess]

Welcome to MDC.

[2boyzmama]

Welcome!

It's SO GREAT that you're able to produce that much breastmilk, not all women are, and even fewer are able to produce that much with just a pump! I'm a good pumper, and I have lots of extra milk that I donate, but I know lots of moms that can't pump.

All three of my guys have reflux, only Connor had GERD though. Thankfully he was still able to nurse (really a miracle since he has multiple craniofacial malformations: palate, lip, tongue, larynx, trachea, etc) I had to cut dairy and soy, and that was enough to get him off reflux meds (we went through several different meds trying to find one that worked, but cutting the dairy and soy was what worked the best).

How's your little guy's pulmonary function? A lot of GERD kids end up with pulmonary issues from aspirating.

Anyway, welcome! Look forward to getting to know you

[Dom&O]

Hi and thanks for the warm welcome! I know I am lucky I can pump so much. It has been a long road, and I still have to pump 5-6x a day to keep up my supply, but I know I am very fortunate to be able to do so. Some days it doesn't feel that way though as I'm so ready to be done with it, but its a true labor of love!

His pulmonary funtion is good. Fortunately, he doesn't aspirate, or only very minimally as a swallow study has shown. We've never had to thinken feeds..but we've had every test in the book for reflux though, including an endoscopy to rule out celiacs and EE. We're still struggling through the food intolerances (all allergy testing has been negative) and he has pretty bad eczema even with the dairy and soy elimination so I think we still have some work to do there.

Most of his issues currently is related to feeding aversion. I think we are also dealing with some sensory issues, and now its more behavioral then anything else. We still have gagging/vomitting issues as well (but not from the reflux, more from the aversion stand point).


It does sound like a miracle that your son was able to nurse, that was alot of hurdles to overcome! I wish just cutting dairy and soy worked for him, but he needs the meds too...not sure when we are going to wean from those, he sees his GI later this month as well.

Look forward to getting to know all of you!

[LynnS6]

Welcome!

[sbgrace]

Welcome!
You are doing such a wonderful thing for him and I know how hard it is (I pumped too).

My son was a severe refluxer as well with feeding aversions (he remained failure to thrive though until he was 18 months and we finally found Zegerid and dosed him three times per day...have you found Marci kids site?). He wouldn't swallow breastmilk either unless he was asleep. We did the whole scope for EE and celiac too.

[remonb]

Welcome I also live in NC and have a daughter with special needs. Good luck on nursing school.

[momtoalexsarah]

Welcome, My DD had GERD as well - hers was mostly structuraly caused but also an allergy to wheat - that did not show up on any testing - we only discovered it after she made dramatic improvments when we removed it - and gets the refux back when she gets into wheat.