I posted several weeks ago wondering about the possibilitly that my son might have DGE.
We saw the GI specialist and he basically just dismissed my concerns about the reflux not being properly controlled and the possibility of DGE.
He instead wanted to test for things like cystic fibrosis, celiac disease, anatomical probs in the digestive system, probs with absorption of nutrients, and growth hormone problems. Everything came back normal, with the exception of a possible deficiency in a growth hormone. The doc is consulting with an endocrinologist and should get back to us this week.

My gut still tells me that the lack of growth is all tied to the reflux. It seems so obvious. . . we cut his dose to 1xday in January and his weight started to taper. I will talk to him this week about increasing the Prevacid back to 2xday.

I'm pretty frustrated and feel like I was pretty much dismissed by the doc.
:)
Alicia

How frustrating, Alicia! I've had many doctors dismiss my concerns over the years too. It's as if moms don't know anything sometimes. Are you finding that there's vomiting hours after your son has eaten? Does he also have next to no appetite all the time? If so, keep pushing the doctor for a med. trial to see if it helps things to improve.

It IS very frustrating!

Yes, he hardly eats anything. I rented a nursing scale and found that he is only taking about 3 oz per nursing session for a total of about 12-17 ounces during the waking day. We cosleep and he does nurse at night, but I did not do the weights b/c I didn't want to interfere with his sleep.
Clearly, this is NOT enough food for a 10 month old child who is almost exclusively breastfed (he's had trouble tolerating solids). According to the doc, he should be taking about 40 oz per day.

His spitting up has drastically improved, but he will spit up hours after eating and I'll find myself wondering, "Now where in the world did that come from?"

Although the spitting up is improved, I can still hear it coming up into his throat, but it usually doesn't actually make it all the way up to his mouth. The doc said this is a sign of improvement, but from I've read, it is still a real problem. This doc is supposed to be "the" guy to see, but I'm really feeling like he's missing the red flags on this one.

I'm planning to visit with him again to discuss my concerns (again).
:)
Alicia

He doesnt have to spit up or even throw up to have DGE, it could be that he has learned to regulate his intake so that he doesnt feel nauseus and throw up. Breastmilk is easiest to digest to, so he may not tolerate solids due to DGE.

Let me tell you a few things though just to get you thinking even more. My son is 14 months and does have confirmed DGE. It is considered severe because he emptied 20 percent after 90 minutes. It was 5 ounces of neoacte formula. He was breastfed only but around 5 months, he gradually nursed less and less so that by the time he was 9 months, I lost my milk. He didnt tolerate any formula offered at that point except for Neocate. I conlude now that he did not tolerate my breastmilk based on some food in my diet. I based this conclusion on the fact that neocate is harder to digest than breastmilk, and even though he has DGE, he drinks enough of it.

He does not tolerate solids, at 14 months he can only eat cheerios and drink neocate one. He weighs 19 pounds....a little guy. He drinks 24 ounces a day....that's it. The thing is that we tried erythromycin and it didnt work. We dont want to try Reglan. He takes periactin, an anthistamine that stimulates the appetite. He drinks an extra 8 ounces a dsy on this med. This is not designed to treat DGE; it often works for kids who dont eat a lot regardless of the cause. You could ask the doctor to try this med.

Our intitial GI dismissed me as well when I said I thought he had DGE. He was wrong, my son does have it. But the thing is that once we got a doctor to discover it, we havent done anything different. He was already on periactin. That is when we tried erythromcyin but it didnt help. The doctor suggested surgery and we said no. So we care for him the same that we already had been doing. He eats small meals and doesnt eat a lot. We dont push him because we know he cant eat more. I just want you to know that the treatment options are limited. I was so gung ho on getting the diagnosis, but once we did it was somewhat disappointing to know that the only thing that really helps him is what we were already doing.

We went through testing too for other stuff but like Carla, our son has DGE. Our GI treated it right away though while checking on the other stuff. I would find someone else if this guy won't take you seriously. Our son emptied 20% as well and ended up having surgery for it, he is much better now. There are meds and things you can do with DGE to improve the quality of life for your son (if they work, like Carla said). In the end the best thing we did was the surgery. I feel that the DGE may have been the cause of his reflux.

((((big hugs))) Keep us posted.

Five months later. . . I have another update.
:)
I had months and months of nobody wanting to take the ball even though I felt like I was begging doctors to listen to me. My looong story in short form is . . . our GI finally wanted a gastric emptying study at our last appointment. We had it and . . . surprise (not!), he is a slow emptyer. We will be starting Erythromycin and I'm hoping it helps.

My son is now 15 months old, still hardly eats a thing (15 oz of Elecare by bottle) and maybe 4-6 oz of stage 2 babyfood per day. He is only about 17 pounds.

Can anyone tell me . . . does the fact that I've probably inadvertently often not been giving Prevacid on an empty stomach (due to slow emptying), does that mean the Prevacid often isn't working? Does it have to be given on an empty stomach? Just wondering if the reflux has been worse than we thought . . .

Thanks!
:)
Alicia

Were you giving it in the morning? He was probably almost empty then, right?

My son refused to take his meds alone (he'd just vomit them right back up) so I always had to mix it into food -- therefore I wasn't giving it exactly the way I should, either.

Maybe, once you get the erythromycin going AND the PPI becomes more effective, you'll have a great eater on your hands! I'll cross my fingers for you!

I hope that everything works out for you. I am beginging to wonder about DGE for my own Daughter.

Thanks for the replies.
We are giving Prevacid in the morning and the evening. The morning dose is probaably usually on an empty tummy, but the evening dose is probably not.
:)
Alicia