Posted By Posting
Apr 10, 2009
mommato3
Gastric Emptying Times (GES)
I am curious about normal emptying times. We had Holden's gastric emptying scan done yesterday. They told me that after an hour they wanted 60% to be empty or we would have to take some more pictures an hour later. Well at 1 hour Holden had emptied 58% so they just waited 30 more minutes and took another picture. So basically in 90 minutes he had emptied 68%. He took a four oz bottle. I was really hoping to get 5 oz in him to get a good test but they told me if he threw up that the test would be called off because they wouldn't know how much of the radioactive stuff he still had in him and they couldn't give him any more. So I didn't push my luck and try to get any more in him. We should hear back from the docs next week. Anyone with any thoughts on normal emptying times. Holden is five months old.
Apr 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
Jen sent me over, I for some reason did not see this until now, sorry. :-)

We were never told exact times on Jedd with his GES results we were just told they were normal. I will tell you that GES can be a very unreliable test for DGE though. What could pass as normal at one hospital would qualify as NOT normal at another one. It's just nuts the way there is NO set standard for this test. Maybe that's why we were not told an exact number.

I will tell you that while on meds Jedd's motility was slow even though 2 GES came back normal. I could drain his gastric contents via his G tube and tell he was having GREAT residuals left.

At one point I had given him 3oz (90cc) via his pump. 2.5 hours later I was checking to see how much he had left because he was on feeds every 3 hours during the day. When we drained all his gastric contents and I do mean we drained them all, we wiggled him around and all sorts of stuff until he stopped draining completely he had about 75CC left. That is HORRIBLE amounts to have left.

We gave him his motility med, which at the time was Reglan and drained all his contents back into him. IF you just throw away the residuals instead of giving him back you can cause a drop in blood sugar and that would not be good.

We waited the 30 mins to pass until is was time for his needs feed and checked him again.

When we drained him this time he only had 15CC left. That is classic DGE!!! Even though we had tests that sowed he did NOT have it. We did that same thing over the course of the weekend 4 times and had about the same results each time. That is why we were really really sad when he had to come off the Reglan due to extreme crankiness. Erythromycin just didn't work as good when we drain gastric contents while using it. :-(

Because the testing for DGE is soo unreliable most GIs will just use a motility meds to see if there will be any noticeable difference. If the parents see a difference over a period of time, they will just give a diagnosis of DGE and have them to continue to use a motility agent to allow the stomach to empty faster.

There are different types of gastric motility problems as well though. Why did they want to do the testing??? Was it just because you had a HUGE puker on your hands???

I know someone who suffers from Viral Induced Delayed Gastric Emptying. So she can go through periods where she feels decent and then where she is horrible.

Most of the time DGE will get better with age, meds, and diet control (oral intake of foods).

Apr 14, 2009
mommato3
Thanks for that info. That is weird that their is no set standard. They ordered that b/c he is a huge puker although that has gotten better since on Elecare but he is NEVER hungry. Will go hours upon hours without eating. He was on Reglan with success at reducing the vomit and some success with increased appetite. They wanted to see the results of the Emptying Scan b/c she (Doc at Cincy) says they don't like to use Reglan unless necesssary and that their are some other things they can try. My understanding is their isnt much else out their right now, but oh well. We'll see what they say. I know she says that for kids that are really delayed they do Botox. Pretty interesting. She called yesterday and said the emptying scan showed mild delay. Well I think it was mild b/c he only had 4 oz, which isn't enough at this point for growth, and he was starved to death b/f the procedure. Also he had only been off Reglan for 48 hours. Now after 1 week off Reglan i can see a HUGE difference in his appetite. Thanks for all the info. I think you know a lot about everything. Your wealth of knowledge is greatly appreciated. Jedd is adorable.
Apr 14, 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
Yes they can do botox injections into the pyloris but....it can wear off and they normally can do them every 6 months. IMHO I'd do that last really. Reglan is scary but it really worked well for us and the bast majority of kids do fine on it.

Altering the diet can help also. What kind of formula and what foods are you doing??Food high in fat are gonna stay in his system longer. KWIM

Apr 14, 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
Forgot to say thanks, we think Jedd's cute as well. :-) But we are partial of course. And yes, I've learned alot by research and talking to other Mothers on several different GERD sites online and having extensive conversations with Jedd's DRs
Apr 14, 2009
mommato3
Finding a doc these days to tell us the right dose of Reglan is the problem. I think he is a little underdosed and still has DGE symptoms on it I do still have 3 refills left on it though. Right now he is on 26 calorie per oz Elecare. we've tried lower calorie but his intake still isn't what it should so while his intake is less on 26 cal. at least he's gaining a little. Any suggestions for feeding schedules and DGE. Right now it seems like he takes more when it's really spaced out although he sleep feeds almost everything. We were waiting until after the workup to start solids. I did give him a bite of cereal the other night and of course he gagged. I'm just scared that he really won't want to eat when he starts solids. Any suggestions?
Apr 14, 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
Boy, that's a loaded question and hard to answer. How to get them to up their intake. I could give a long long drawn out answer but...I'd check into Early Intervention. Have them come out and do a full eval. It will be free. they can tell you is you qualify for EI services for feeding. If you are dream feeding then yes you should qualify.

We did 27cal formula and Jedd was on 3 hour feeds with the pump. and then 10 hours at night. Ideally, in hindsight, that was an awful schedule. He puked constantly. And I do mean all the time. We stopped giving him a bath because he would have NEVER been outta the tub. He always smelled like puke for about the first 12 months. It was awful.

Jedd took 2.5cc's 5x's a day when he was on Reglan and it worked well for him. His Gi was more than willing to up the dose because he was gaining weight due to less vomiting while on it.

As far as solids...I'd give it time. I know that is hard. But many times, starting solids can just cause sooo many more issues. You have to figure out what to avoid and many times you won't know what that is until you feed it to him. It's hard. Each kid can react to something different to set off a flare up. GERD STINKS have I said that yet.

Have you seen an ACTUAL Motility specialist somewhere yet??? They would be GREAT for you to see. Which coast are you on and I can tell you the best ones to go to. If you are on the West coast your choice are gonna be VERY limited. Sorry. :0( There are just not really any choices on that side yet. Not any really really really good ones.

They can set up more testing and can give great direction on a game plan for feeding too.

As far as what to avoid. HIGH fat foods are NO good. they just sit there too long. High calorie, low fat are the best. Have you tried to go all the way back down to 20 cal formula and see if there is a difference?? BTW who has you giving a formula that high, not to be nosy....we were instructed that you only go up if you are told to by a DR. IF can be very taxing on the kidneys because you are basically taking WATER out of the diet. Their little bodies have a hard time doing that at such a young age.

the only reason we did it was because we HAd to per the Cardiologist's request to gain weight for open heart surgery. :-( That and he was basically FTT and needed it. We had NO choice.

Check with your
doctor first!