We are now at day 5 (or 6...can't remember...) of our meticulous charting of B's liquid/solid intake. As you remember, we're doing this to see if her intake is declining as the day wears on, indicating that B's stomach, etc. might not be emptying at the rate it should be.

My dh and I had a long talk last night. We are so tired of hearing specialists tell us that they are "concerned" but seem to take a "wait and see" approach. Not that we necessarily want to rush into testing, etc. (as it may not give us answers), but especially since this kid is STILL stalled at her current weight (and losing a few oz. each time we see the doc) despite the addition of Neocate Jr. (she takes 20 oz. per day at 32 cals./oz), we're worried that we're stringing things along.

My questions are as follows:

1. The GI still has a sneaking suspicion that she is a Celiac kid. He said she has the "Celiac phenotype" (some physical characteristics of a person with Celiac) and her symptoms point strongly to this.
She is IgA deficient, so the blood test was useless in helping us target this. She was 'scoped last January (at 14 months old) and it came back negative; however, she was almost a total noneater at that point--only taking some purees.
If you were in our shoes, now that she's regularly been ingesting gluten, would you ask to have her re 'scoped?

2. Does an upper GI always show DGE if it's present? Instead of doing weeks of charting, would it be better to just pump the barium down her and see how quickly it goes through? I'm concerned b/c the charting we're doing does show some decline in intake as the day wears on; however, as a function of her schedule, she does get more of her calories in the morning. (she naps for 2 hours in the afternoon and goes to bed 4 hours after her nap).

3. Do you think we're nuts for considering putting our kid through more testing, or do you think the "wait and see" charting approach is a good one?

I don't know, but your post sure does sound familiar to me.
Eric has never been scoped, but the doc said he had the "Look" of a celiac child and all his symptoms correlate. Eric is also Iga deficient, so his blood tests came back negative for celiacs and are basically worthless, but his doc is taking it as negative for celiacs, and that's that.

I thought they had to biopsy the intestines to look for sprue. Is that what she had done or are you talking upper endoscopy?

The UGI isn't a good test for DGE. I was told an emptying study is a completely different test than a UGI. The testing takes longer and they bring them back for more pictures as the barium makes it's way through their system. The UGI just follows some barium through the sphincter at the bottom of the tummy to make sure it's working properly and then it's done. They don't wait for the tummy to completely empty.

I don't know what I would do in your shoes. I don't want Eric scoped. I just have this fear of it, so I told his GI I was willing to do anything to avoid that test. But I bet if Eric continues to have problems it won't be long before I lose this fight.

Mary, why not try a gluten free, celiac diet and see if it helps things?

Kids as young as Bethany don't always test positive for celiac disease. The german hospital was suppose to test Owen but they never did so there is no results there. I send in some stool samples that I had tested at enterolab.com and they came back positive for gluten and casein sensitivity.
You might want to look into getting her tested through them. What are all of B's symptoms that make the doc suspect celiac? I know she is rather losing than gaining weight and short for her age but does she have any other symptoms.
I'm glad that I went gluten free with Owen and he is doing really good on the diet. His rashes are gone, he sleeps better and more restful at night and his reflux is a lot better(not gone though) as well.
As for the delayed gastric emptying, don't they have a special scan that they do over several hours, take x-rays every what 1/2hour or 1hr to see how much she empties in that time.

I hope that you guys can finally hopefully figure out what is causing all these problems in Bethany and they are easy to fix.

Mary,

Allie had an UGI done when she was 4 months old. It showed no problems with her emptying. I didn't buy it and kept pressing for the emptying scan to be done. Finally, when we scheduled her surgery to have her G-tube placed (surgery wasn't done b/c Allie started taking her bottle again) the doc ordered the emptying scan to see if he would place a G tube or a J tube. He only did this because we had the G tube surgery scheduled.

During the empyting scan, they made Allie lay still for 75 minutes after eating. The test showed that she only emptied 13% after 75 minutes. This is terribly slow, and considered SEVERE DGE. Her old GI doc insisted that the UGI would have shown DGE, but it did not.

Now, I am pretty sure that Allie's DGE is improved, but I would insist on the emptying scan. It was much easier to do with Allie at 6 months of age b/c she slept through the whole thing. It may be hard to get B to lay still for that long (I took Allie for a repeat scan a couple of months ago and she would not cooperate so we didn't go through with it).

Also, if they find out that B has emptying issues, they can start with a non-invasive procedure to enlargen the pyloric valve by doing a baloon dilation through a scope. No cutting, and done by scope, it's very non-invasive. You can also ask to have an ultrasound of her pyloric valve done to see if her problems with emptying are related to a small opening in the pyloric valve (not pyloric stenosis, but close, kwim?).

I hope this helps you. Allie still doesn't eat solid foods either. I also agree that you may want to trial a gluten free diet and see if that helps.

Hang in there. I feel your pain.

Christyn

Mary, I agree with Roni, try the gluten free diet and see if that does help.
I talked to a woman while we were waiting for Jack's upper GI to start, her daughter was 14, was diagnosed at 2 weeks old as FTT. They could NOT figure out what was wrong with her. They sent her to a GI, which was supposed to be the best in St Louis (which is where we go now by the way, but one of his partners) and he totally missed it. It was celiac. I can tell you that she finally saw a doc that suggested the celiac diet and her daughter was better within a week, I think.

As far as the Upper GI, I can't tell you. I know that when Jack had his, it took a long time (or so I thought) for his stomach to empty. The tech kept reassuring me that it was because he was upset, etc.... so, I just don't know if that is accurate to diagnose. I didn't know, and still don't, the amount of time that it takes for the stomach to empty.

As for your last one, yes, I would do the testing. I don't think that you're nuts, well, not for that anyway. LOL you have to, for you and your dh's peace of mind find out why B doesn't want to eat, why she is losing, etc.

(((((((HUGS)))))))):hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Mary, that is a tough decision. When our little ones are sick we want answers fast and want it fixed! You have been thru a lot with her eating and I would want more answers too. We have been thru all kinds of tests with Sam and still do not have answers. But, I feel good about how hard we have worked to figure him out---it makes it easier to accept who he is. I know we have done everything we can to help him.

If you are going to keep wondering, I personally would get her scoped and do an emptying scan.

You could try the gluten free diet and if no results look into the scope.

How about a second opinion from another GI???? A new doc may have some new ideas.

Thank you all so much for your input. I'm not really the panicked-nervous-Nellie type; however, my dh and I are both so tired of sort of "winging it" and not really knowing what's going on.

Both the GI and the feeding team have mentioned that B has "emptying issues", but she's never been tested for/labeled DGE. This has always been fine with me...until recently.

Both the GI and the feeding team have wondered on and off about Celiac. She went through that long stretch (over 9 months) of no growth/gain and has never been able to break past the 20lb. mark. She is a pale, skinny kid with long fingers, toes and eyelashes and purple circles under her eyes. The GI has pointed these things out to me twice, telling me that's the "celiac look". I like the guy and I generally think he's a good doc; however, I don't know much about GI issues (except from our experiences and what we've learned here!), so I don't know as I'm the best one to judge. I thought I was supposed to be happy at our last appointment when B gained a few ounces--as he seemed to think that all was now going to be okay; however, the feeding team is reeling about this. They all think that merely gaining a few ounces, as B tends to do (and then lose again so quickly) is no answer to our problems. *sigh*

I don't need for my kid to have Celiac or DGE, I guess I'm sort of feeling like I want to know we've done all the testing we could/should have done to rule everything out.

As for trialing the gluten-free diet, we've toyed with this; however, I've been scared to do it b/c she already eats so little...I think I'm going to print out the recent article Roni posted re: the relationship b/t GERD, DGE and Celiac and talk to our feeding team about just going gluten-free for awhile.

I'm just so confused--we're doing all this meticulous charting, which is supposed to help give us answers; however, I can already see a huge flaw in the system. If B's nap is earlier or later than normal (or if she awakens earlier or later than normal), her feeding is totally affected. Today, she napped earlier than usual and, thus, is taking more liquid this afternoon than she did, say two days ago, when she slept until 4pm. *tears out hair* I'm afraid we're going to get skewed results...

Thanks again for your advice. It's really been helpful! :-)

I don't need for my kid to have Celiac or DGE, I guess I'm sort of feeling like I want to know we've done all the testing we could/should have done to rule everything out.

As for trialing the gluten-free diet, we've toyed with this; however, I've been scared to do it b/c she already eats so little


The gluten free diet scares the crap outta me too. Most of his cals come from things that contain gluten. I feel like he restricts his diet enough without me restricting it even further.
Not to mention not having any support from my family without a diagnoses. "There's Minnie spending too much time on the computer again. She came up with some other crazy idea." I know no one would respect the diet if it wasn't ordered by a doc, and the diet trial would for sure be sabotaged by someone in Eric's life.
I have days where I say "I'm doing it!" and then I chicken out every time.

(((BIG HUG)))
It's hard to make decisions like this.
Whatever you decide the next plan of action is I wish you all the luck with it. Here's hoping you and the docs come up with something you can live with soon. I always feel so much better when I have a plan, ya know

I'm not going to be much help here....

The wait-and-see approach is maddening. You feel like you're just being put off by your doctors, and you have the same old concerns and fears for the next three months. But I don't think I'd go through testing, either. The UGI and emptying studies are very different, so it stinks you didn't have the emptying one done sooner. Because I don't see any way that B's going to endure it. D's was only 60 minutes, but he was not supposed to move -- not even when he puked all over himself. D's results say: mother insisted we stop study, but the truth is, he got to minutes 47 and puked the ounce we'd made him take for the study and even more, so it must've been from his previous meal. Still, the results were considered "inconclusive." So, as you well know, even the tests aren't foolproof. You may go through them and still not get any answers.

We played the "wait and see" game for over 14 mos w/ our old GI,who had been w/ Ava from birth. She had had every test under the sun, but yet we still had no answers, and were nowhere even close to figuring things out (oh yeah, and we still aren't, but that's another story!).

The scope isn't as bad as you're thinking it is...Ava's last one took only about 25 min. She was lightly sedated (they also inserted the ph probe then too), and once the sedation wore off, she was ready to hightail it to the playroom! The UGI and the emptying scan are both no fun at all though, w/ older kids. What kid wants to willingly drink barium and lay still on a cold xray table???? Ava was really to'd about the whole thing, and I cried like a baby when I had to help hold her down and try to calm her down at the same time. Something we'd like to forget, even though she's supposed to be having another UGI on Friday morning.

The scope could probably give you a definitive answer on the Celiac, which could in turn help you devise a better plan of action, kwim? You guys have been thru soooo much w/ the food intake struggles, I really think you deserve some answers at this point. I firmly believe that knowledge is power, and if you can gain that knowledge from a sedated half hour, and it will save Bethany some pain and problems in the long run, I say go for it.

I know that testing is scary. I also know what the wait and see game feels like, and I am done with myself and have opted for further testing. I think that given the delicate nature of both our kids weight issues, I can lend a bit of an understanding view.

I totally agree with you that going gluten free on your own is a frightening prospect. She is eating so little as it is. Plus, what if they then up and decide its time for a scope? If she is celiac, then where will you be? I personally would want to go ahead with the scopes. I would want to know now. If she has the celiac look, why wouldn't they want to find out for sure? If nothing but for peace of mind. If she does have it, from what I understand, her turn around will be amazing and she will start picking up weight in no time. If it is all clear, then at least it is ruled out.
As for the emptying, ugi can show it, but don't always. And they don't illustrate the severity of it either. Em had 2 ugi's, only one showed a delay. She also had what they called an esophogram. Looked like a ugi to me, but it showed a pretty significant delay. Em's delay was caused by inflamation in her stomach and the opening into her duodenum from the eosinophils. So inflalmation can cause dge among other things, and would also be a good thing to be able rule out with a scope.
I hate like h*ll the thoughts of watching my baby go under anesthesia in my arms again, but I hate even more not knowing what is going on. I am tired of it all and it isn't fair to Emily. It sounds like you and dh are starting to come to the same conclusions for Bethany.

I also want to throw another thing at you. You have a little man coming before you know it. If you decide that you want these things done, let me tell you it is soooo much harder to go through this stuff when you have another little one at home. If you are leaning towards a scope, I would suggest that you try to get it done before the baby comes.
Just my 2 cents. This from a mama who really knows what you are going through at this exact moment! HUGS!

If I knew for certain a test would tell me something I didn't already know, I'd do it in a heartbeat. Otherwise, I am so over testing. I swore after Catherine's top-to-bottom scope last January, that there would be no more testing. And yet, I caved into another fishing expedition just last week and subjected her to an abdominal u/s, which wasn't invasive but did require her to go without food for 18 HOURS by the time the hospital got around to her. It told us nothing. As I knew it wouldn't.

Gluten-free is easier than you think. We did it with Catherine for about three weeks a couple of months ago. We were trying it from a behavior management standpoint, though, and there was no appreciable difference so we went back to gluten.

Melissa and Lesley--I can totally appreciate both of your viewpoints.

She was 'scoped at 14 months and had the biopsies done. It showed nothing. I found out later that this isn't such a reliable thing to test for food intolerances, etc. when your kid is:
1. a very young toddler
2. a veritable noneater

Thus, my apprehension at having the scope done again.

On the flip side, if we do just go ahead wtih gluten-free and then one of our docs orders a 'scope, I don't want to question the results thinking I could have skewed them with my diet.

I am going to call our feeding team's NP (I really trust her--she's very to the point and will give me an honest answer) and run all of this by her.

We're absolutely NOT in an emergency situation at all. I'm concerned that we've just not seen progress over such a long period of time and, with cold and flu season here, we simply cannot afford for this kid to get sick/lose weight again.

Thanks again for all of the input. It is so helpful to hear different viewpoints from moms who've "been there" and be able to present them when talking to a professional!

Mary first off I am so sorry that I am late on this, I really see all your points and have been there on everything you have said.

I am frustrated with Parker also, he is out of the woods so to speak but I know that if I didn't do what I do, he wouldn't be this way, we do what we have to do to make it as good as possible. All of your flip side concerns are very valid.

1. Should you have another scope? I actually don't think so at the moment, Parker was in the same boat as you, he was scoped at 14months and he was eating nothing at all when it was done, I only found out later that he had to have certain things in his diet for it to be valid. But at the time it was done, you were breastfeeding Bethany and you were eating gluten so I am assuming that the test was more accurate than you think. Taking this into consideration, I would give her a gluten free diet. I was really scared when I did it, but honestly there is so much gluten free out there, that is was not difficult at all. Check the progress in a month and then re introduce it and see how she reacts, it may not be celiac, but it could be sensitivity.

2. Should you have an upper GI, well I have just found out, (duh, me), that the upper GI is not used for DGE, it is a swallow study, so this is the one that you would want. Should you have it done? Well I was at the ped on Monday asking the same thing, and his response to me was no, we have had a lot of tests and what would we get out of it, he said we should assume that Parker has a degree of DGE and that is just that, I kinda liked his approach to it. He said we can give meds, he mentioned reglan (maxalon) and I said no, he already has his side effects I don't need another one. So again this is up to you, but if she has DGE what is this diagnosis going to do for you? Weigh these answers up, and then you will have the answer to whether or not you should have it done.

As an aside, a while ago I asked Carla about DGE and she said that the older they get the harder it is to diagnose with the Swallow study, it was a pm and I can't remember exactly what was said, but keep this in mind and ask the Dr.

I can' t remember question 3, I will go have a look after I post this. LOL

I really do know where you are coming from, just remember that you make really good decisons for B, it isn't unfair to her to have tests if they are going to help. The hardest part for me so far as a mother has been making these types of decisions for my kids, and no one can prepare you for that.

oh I see number three now, NO you are not nuts at all, wanting to have answers is not a bad thing. You will get there with this one day.