Thank you both, Lori and Ann, for the reassurance that we are not alone in going through this. I just wish either of you had been able to tell me that everything resolved fully with the reflux at say 11 months (which is a week away). 
I am on the TED with very few additions. I have been milk/soy free since 7 months and on TED since 8 months. I accidently trialed barley (bought the wrong organic crispy rice cereal) and he failed it miserably. So we know that either barley itself is a problem or gluten in general. We are therefore not going to challenge any of the gluten foods for a long time. And it is quite easy to be gluten-free when you are already “free” of almost all foods! My diet currently consists of turkey, lamb (not eaten often), rice, potatoes, sweet potatoes, squash, zucchini, pears…and we have successfully challenged in my diet apples, bananas, soybean oil, corn oil, beef, and quite a few spices.
We have been giving Andrew a probiotic for quite a while now. But I hadn’t considered aloe. Questions: I would be interested in knowing what brand of aloe you use. A friend wants me to try mangosteen juice – have anyone heard of it?
Teething is currently – and constantly – an issue at this age. So it is hard to know if his reflux would be different without the teething. Every tooth in his mouth seems to be bothering him in some way or another. He has had his two bottom teeth for a month or so and in the past couple of days the top two have finally been breaking through.
We went to a ped GI at 6 months when he was “failure to thrive”. He had lost 2 pounds in two months. We had been saying all along that something was wrong with him but it was always attributed to “colic”. The ped GI told me to give him formula (he didn’t bother to specify which formula) for two weeks while pumping to be able to monitor the amt he was eating. We gave him Alimentum and he did better – crying only 30-40% of the day instead of 75%. The ped GI did an upper GI with small bowel follow through and a sweat test (to rule out cystic fibrosis due to his FTT). After finding nothing in both tests, the ped GI said we could just continue as we were doing since he was gaining and happier on the Alimentum! He told me I could go back to nursing a little if I wanted. He mentioned MSPI in passing but quickly dismissed our inquiries about it saying that Andrew didn’t have blood in his stools. Well, we went home and researched it and found that he matched 9 of the 12 symptoms of MSPI in that DISA article. Once going on Neocate (which the ped GI said we could “waste our money on if we wanted”) while getting my breastmilk milk/soy free, Andrew became a normal, happy baby. The first day of the rest of his life was October 5th (he was 7.5 months old and was happy for the first time!). After 2 weeks of milk/soy free diet, I tried nursing again but quickly realized that I had to go onto the TED since he reacted to something in my diet still. So most of October he was on Neocate and very happy and “normal”. However, during the last week of October, the reflux started. 
We had to go back to the ped GI for reflux meds since my ped was on vacation. The ped GI half-heartedly gave us the script for compounded Prevacid, but offered no patient education about reflux or any sort of help at all. I have no intention of ever seeing that doctor again! Perhaps one of the other doctors in that practice might be better, but the whole experience has left me with high medical bills for worthless appointments.
Questions: What is involved with the PH probe and an endoscopy tests? I am very intrigued, Anne, that you were able to determine your son’s frequency of reflux.
I also appreciate the explanation, Lori, about the cycle of pain at night because of breastfeeding. I try to comfort him without nursing and it used to work a couple of weeks ago. But lately nothing helps – Mylanta stops the crying for a few moments since he immediately sucks his thumb after I give him any medicine, but the Mylanta relief doesn’t last more than 30 seconds or so. I try walking/bouncing him while patting his back – that used to work too, but not now. Rocking him sitting upright in my lap with his right side against my chest (so he can suck his left thumb) used to work..but not now. The only thing that works is nursing – and even then he cries and struggles while sucking (likely the horizontal position) until he starts falling asleep.
Questions: How exactly do you elevate your child’s bed? How much of an angle can you do before they just slide to the bottom?
Thanks again, Dianne
