Reflux: The Way Ahead

The fantastic news we got recently is that Ben's biopsies show no inflammation and the ped GI was able to rule out eosinophilic esophagitis.  This is wonderful because the concern was that Ben had an autoimmune condition and worst case scenario was that he might need a feeding tube (thankfully, I know a few people whose kids are thriving with feeding tubes but it is something I'd rather avoid).  There is bad news and that is we are no closer to understanding WHY Ben still spits up at 21 months.  Even with reflux, actual spit up after the age of 1 is uncommon but Ben still does spit up.  Honestly, not having an answer is making me a little crazy.

One possibility is that he has Sensory Processing Dirsoder (SPD), like big brother, Liam and has texture issues to food.  SPD often runs in families and Ben does demonstrate some sensory sensitivity by toe walking.  Another possibility is his dysphagia (medical term for difficulty swallowing) is due to the fact he knows it will likely come back up.  Would you want to swallow chunky food knowing you'd feel it in your throat an hour later?  In either case, the treatment is OT focused on feeding problems.  Since Ben already qualified for Early Intervention, it is one of his goals for therapy.  Last week we tried yogurt covered raisins, cut up grapes, and tortilla chips.  Ben asked for all of them and spit all of them out.  After spitting, he'd happily ask for more.  I think the OT noted one raisin and 1/4th of a grape swallowed.  That is how most meals go.  This week we focus on meats.  The OT also brought some toys that stimulate the mouth and tongue and Ben was happy to play with them but insisted on controlling how much they touched his mouth.

Another possibility is food allergies causing reflux or even celiac disease.  I have asked several times for allergy testing for Ben and keep being told it isn't needed or justified.  I don't know of any other 21 month old that spits up, and I am having a hard time trying to figure out why Ben does.  I can either keep fighting for allergy testing or put Ben on an elmination diet so I can figure out allergies without testing.  I'd much rather get a referral for allergy testing; I just don't trust myself enough to see a difference in reactions during an elimination diet.  I know I saw no difference with eliminating casein, so there is more than just a milk allergy (he might still have a milk allergy but I didn't see a difference b/c he has multiple allergies or maybe he is only allergic to gluten and not milk).  In any case, I'd feel safer with some sort of allergy testing to guide me through an elimination diet.

So, my way ahead for Ben's treatment is

medical: continue with the Prilosec and try to wean him off it every 3 or 4 months and pursue allergy testing,

behavioral: continue OT for feeding issues

alternative: seek out a chiropractor, hopefully one trained in craniosacral therapy to address Ben's reflux

I am really hoping somewhere down the line there are answers.  Liam was a different child once he was diagnosed on the spectrum and started the right therapies.  It was like we turned a key and unlocked Liam's potential, and I want that same thing for Ben.