Posted By Posting
Jul 12, 2009
mommy2k
Jeddsmommy
Hi! I want to pick your brain about delayed gastric emptying. I know how knowledgeable you are and it seems that you may know some things about this.

Kody as you know had his test last week and his stomach only emptied 31% in one hour. Well he only ate like maybe 2.5 oz that morning too. I'm just confused about this because if it were that bad wouldn't he be a huge puker? I'm dumbfounded by his results. We're currently on erythromycin again .44 ml 3 x's a day. It doesn't really seem to be doing much for him right now but it's only been a few days. We more like actually probably end up giving him .5 ml instead because it's about impossible to get that exact.

He's eating much better and has started to eat solids for me. I don't know what to think about his test. I was hoping to get some insight from you about delayed gastric emptying if you don't mind. Thanks so much!

Jul 12, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
The test for DGE can be unreliable because it's just a snapshot in time. That said, it sounds like your's was done on the right snapshot in time though. Motility changes sooo much from one day to the next, that's what makes it soooo unreliable. BTW if it says your delayed you are delayed. You can get them to come back as normal and still be delayed. KWIM

They are also sometimes called unreliable because what passes for normal at one hospital will be abnormal at another one. It seems like there is not any one set standard across the board. That's why when you go out of network for motility testing, they will re-do any previous testing at their location.

Yep, emptying that much (31%) in an hour is pretty slow. Esp. considering that her only took 2.5 oz. The dose for the EES (erythromycin) seems low to me (Jedd was taking 1cc 5 times per day as an infant at about 8lbs) BUT, it you are seeing oral intake improve, I'd say not to mess with the dose. Each kid reacts differently. You want to use the lowest dose possible and still see the benefits. So, I'd stay at that dose until you feel the need to up it.

As far as huge pukers, it all depends on how much the child actually takes in. With Jedd, because we had the tube and were feeding on a pumped schedule, we saw lots of puking. Actually, after the first paragraph of this post, I heard Jedd in bed making noise and went to check on him. Sure enough, covered in puke. It was orange, so I am positive that it's dinner that came up and his nighttime snack. Dinner was at 5:00 and he puked it up at 9:00. So, he must be having a slow day for sure. I can tell by the color of what came up. Dinner was spaghetti and meatballs (chef boy R dee) and his snack was 6oz of milk. Distinct color difference.

So, if you have a low intake it could be you won't see alot of vomiting. They are just not hungry that often because their stomach just won't empty and tell them it's time to eat. Hence the reason why some oral feds kids will go long periods of time in between meals without crying/wanting food and will in return LOOSE weight. They also would be the one to not be puking.

Some kids with DGE just like to eat (imagine that....LOL) and will eat and eat with the family/siblings and then at the end of the day they are like a balloon about to pop and then uh oh, they do explode and vomit up copious amounts of vomit. Most of the time as Moms, we can tell by looking at the vomit, as I did today, and knowing what we fed our little ones we can tell how long it has been in the stomach. OH, and by smell. Not only was Jedd's puke tonight orange in color like spaghetti sauce but it smelled like olive oil and Parmesan cheese....LOL I boosted his meal with the oil and cheese.

As far as more testing, since there is NO G tube then you are limited to the GES for motility testing. Only in extreme cases will a motility specialist put the probes down the nasal passages and into the intestines in order to do an Antro-Duodinal Manametry test. It's almost unheard of. Our old ST her DD had it done but really, it's rare. And he DD was a teenager who was having serious complications from GERD and they were thinking of doing a FUNDO. They decided against it because as they suspected, she had DGE.

DGE is sooo hard. I will tell you, that with time and diet, we have been able to come off of Jedd's meds and been able to manage his DGE pretty well. It can be done, really it can. It takes time though and using the meds will buy you that time.

It can also come and go. As apparently as Jedd's episode was tonight. We haven't had one like that in about a month, quick everyone, knock on wood...LOL But, that lets me know that for the next couple of days I will back off a bit and then try again at full (oral) feeds towards the end of the week.

There are also two types of DGE. One is viral induced DGE. Which will go away. The other is the one most of our kids have and it's where the body just doesn't work properly. Unfortunately, that one doesn't go away. But, it gets better with time.

Then of course you have your kiddos who were born with intestinal problems where their body just won't ever work right at all. Intestinal orders and such.

Let me know if you have any other questions. We have definitely been there for sure. It is sooo frustrating because, well, there really aren't any "cures" for it besides the two meds on the US market.

Jul 12, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
BTW that picture of Kody is fantastic. He's such a cutie. And those blue eyes!!!!! Adorable!!!! The girls are gonna swoon over those baby blues!!!! :-)
Jul 13, 2009
mommy2k
Thanks Jessica! That helps me understand it better. That would explain why he has days where things seem to just be going very well and everything seems normal. Then wham we have weeks like we do this week where it's slow going. It's so frustrating. He's eating like a trooper but I'm not sure his stomach is used to it because he's stiffening his body and pushing especially after eating. He doesn't act in pain though just very strange posturing. I'm thinking it might be a reaction to the meds pushing things through. I'm not sure how well it's working for him though. Lots of slow going movements this week and he got completely constipated. I had to give him an enema this morning. Poor guy. It did get things moving though. He was totally backed up.

The gi wanted us to try this first but I'm not seeing that great of results from it this time. Higher doses kill his stomach. How long should I give it before we abort the whole thing? My gi's office seems reluctant to try reglan. At first I was telling them I didn't want him on reglan before tests were done but we decided if it's something that will help him then we would like to try it. It seems to be okay for a lot of kids but others really bad. Right now we don't have to worry about side effects except for the stomach cramps. Maybe he's just not used to his stomach being empty. It's all so confusing.

One more question is do you know what viral induced dge is? I don't think Kody has that but I was just curious if you knew anything about that. A lot of Kody's problems started after he got rotovirus when he was 3 months old. It was awful but things were never the same again for him. Just wondering if it's a correlation?

Thanks again. Oh and he's very partial to the girls already. He's such a flirt!

Jul 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Oh, I haven't gone searching for articles in a long time but here's a good one...LOL

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

Viral induced DGE is basically any illness of the GI tract. Flu bugs, anything like that can slow down motility. In kids who already have emptying issues, a flu or GI bug will be much more drastic in slowing then a normal kid. It used to take us about a month to get Jedd back up to full feeds. It was horrid.

EES can cause stomach cramping, so those types of postures after a dose could be his reaction to being uncomfortable. BTW constipation can cause DGE to get worse. If you aren't already and this is a common occurrence for Kody, then I'd get some type of routine in order to keep things moving. You know, like doses of miralax or such just to use as a preventative to stop it before it starts. Even just adding Benefiber to liquids might be enough to keep things moving.

If weight is not a concern, I'd give the EES at least a month. do you chart how much he takes in during the day??? If not, I would start soon. That way you can log how much he eats, when he eats it and see if over time it has improved. That way you will have a clear cut picture of how the eating is going on.

I have spiral notebooks FULL of this stuff about Jedd. I include, time, amount, whether he puked.....anything you think can be of a help to see if meds are doing their job. You'd be amazed at how you can put two and two together by keeping a log like this.

I just recently after almost 2.5 years of logging, just stopped. I will tell you that if we go to the GI next time and Jedd has NOT gained enough, I'll go back to logging though. I just can't risk NOT going back to doing it IF he loses or doesn't gain enough. By logging we were able to see that Jedd needed a little over 1,400 cals per day to gain slowly.

Reglan is not as bad as it is made out to be. Used with caution, I know some kids who have used it for years with great success. It's def. not a drug to try first, I'd want to fail at EES first. KWIM use the lesser drug first then move on.

FWIW Jedd participated in a drug study for using Augmentum as a motility drug. they put 5ccs of it into his small intestines and monitored his contractions during his A and D man. test. Let me tell you....that moved his bowels for sure. He had massive diarrhea about 3 times in a row. We're talking out the diaper and all over the hospital bed. I have NO idea when or if the drug will get approved though. It certainly worked on him though.

Jul 17, 2009
mommy2k
Thanks for that link on dge. I was on a mini vacation this week and just got back today. Kody got really constipated yesterday though and of course his whole refluxing got worse. It totally has messed up his system for today too. He's slow going again. He's been a really great eater though. I haven't ever seen him eat this well before. He seems so much happier on prilosec and eryo combo. I have to find a way to keep his system going though which seems to be a task right now.

I will have to start journaling what he's eating and how much. He's eating a 2nd stage baby food jar per eating and sometimes a 1st foods jar with that one time. I'm glad that he's so comfortable eating now and is so happy but I think now it's constipating him. He had a lot of problems today and spit up his carrots from lunch today. He rarely does that but again slow going on the bowels the last few days.

I'm happy to say though that he's starting to get used to the feeling of the med now. He's no longer posturing during feeds. He does a lot of time push and turns bright red during some feeds. He's overall been a consistent gainer for us. We were fortunate enough to not have a puker because let me tell you if we did he would hardly be gaining with how much we heard him refluxing. He's not regurgitating as much only when he's constipated or we aren't timing his meds right.

That's good to hear that they're testing for new possibilities for motility drugs. We've had some massive blowouts being on erythromycin. Just for a funny story we were getting ready for our trip on Tuesday morning. After about the third time of me trying to finish packing my DH yells for me to come right now downstairs and is standing there with poo all over his shirt. We later found out that he had given Kody his erythro. too after I had given it to him. I just thought you'd get a kick out of that story knowing the blowouts that can happen being on these motility drugs. lol

Check with your
doctor first!