Posted By Posting
Jun 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Jessica/ Jedd'smommy
Z is having a Gastric Emptying Scan tomorrow. Can you explain to me what manometry testing is and why it's better? Thanks!!
Jun 09, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
I have not heard of that... but good luck!!!!! (hey we go tomorrow to see what gender our new baby is! We will think of Little Z Man!
Jun 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Thanks, I can't wait to see if Z will get a sister in law or a brother in law!
Jun 09, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
hehe! I am laughing right now I can't even respond to that one!
Jun 09, 2009
mommato3
Manometry is like a probe that runs down their nose and measures the contractions, etc. of their stomach to see how things move. It is a rather large probe and I was told Holden is way to young (at 6 months) to have it done without a G-tube. If the child has a G-tube then it has to have been in place for 3 months and they will use that. I don't know how old they have to be for them to use the manometry without the G-tube. That is why it is accurate. The Gastric emptying scan is just a snapshot of one feeding. The child has to go so long without eating that their stomach is empty and then they made Holden drink some formula mixed with a dye. well they told me if he puked the test would be over so I could only get between 3-4 oz in him. If within an hour the child still has more than 60% of the food in their tummy then they have to take another picture in 30-60 minutes later. well, if their stomach is empty when the test starts and they only take a couple of oz well of course it is easy to empty that little. So they can be very unreliable but at the same time they can be very helpful. Since Holden doesn't have a G-tube we are limited to this test as well for his motility. It did show slow emptying so our GI says that he is probably much slower to empty that the emptying scan showed in real life. I know Jessica did 2 emptying scans with Jedd that showed no delay but his manometry showed some delay. If Holden's emptying scan showed delay I am scared as to what manometry testing would show on him. Geez! Let us know the results. I asked them at nuclear medicine how much he had emptied and they told me.
Jun 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Thanks. Z doesn't take much more than a couple ounces per feeding, but they said that would be enough...but you're right, he probably empties that small amount just fine..and honestly..he's already tried Reglan and Erythro, so even if it is slow emptying what are they going to do about it?? I'm just pooped out on all this. I guess it will be good to know and at least this one isn't invasive or too scary.
Jun 09, 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
There are different types of manometry. The one you would need is called an Antro-Duodinal one. It will measure the contractions in the stomach through the first parts of the intestines to see IF they contract and if they contract together to pass food through the system and out the other end.

The tube *can* be placed in the nose and through to the intestines but this is rarely done. Our old ST, her DD had it done as a teen this way. It's NO picinic that is for sure.

The vast majority of kids who have it done have a G tube so the probes are placed through there. Jedd's probes were placed while he was awake (VERY uncommon) and it was shear he!!.

They were placed in IR (intervental radiology) without sedation. Sedation is the NORM for the placement. :-(

The wrapped Jedd up like a mummy and then literally taped him to the table all while I was trying to keep him calm. It did not work. He screamed for the entire hour it took to place the probes. At the end he emptied his bowel and vomited bile. It was not a pretty sight. He also broke blood vessels on his face, neck, shoulders, upper back and arms. When I say that he screamed the entire time, I really do mean scream. Like that I am totally terrified get away from me scream!!! It was awful. Really awful.

The A and D man. test is the number 1 most reliable test for gastric emptying. The one plus of not getting sedated was that we knew for 100% sure that Jedd's results were true. Sometimes the sedation can alter it and make it look like there is slowing when in reality it is the body just being slow after being sedated.

BTW Jedd was supposed to be sedated for it per the GIs (out of state, not here at home) orders. It was written in the chart.

To add insult to injury, the night before we had spent about 45 mins placing an IV for the sedation. Prior to becoming an oral eater Jedd was in a constant state of mild dehydration. So, that made him a really really hard stick.

All in all, we ARE glad we got it done though. It yielded some answers.

And yes, mommato3 is right, we have done 2 GES that were completely normal and the Man. test showed some slowing. We have been able to come off motility meds and control Jedd's with diet with success. I am amazed.

IMHO I would only do the Man test if there are really GREAT issues going on.

Let me know if you have any other questions...I'll answer them for you. If we had to do it over again, we most certainly would though. I just don't think you will find a GI motility specialist who will do the Man. test on a kid without a tube.

Our old ST who had it done on her DD. She was a teen and they had it done in N.C. somewhere.

Jun 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Jessica your story gave me goosebumps...ugh. Well, we are tubeless and we'll start with the GES and see what we get. I'll keep y'all posted and let you know how it goes tomorrow. Since he magically stopped taking more than a couple ounces at a time his puking has slowed down a lot, too..he's taking in only 18 or so oz a day, but I've actually had puke free days...In the last 10 months ihave had none..usually I get 5 or so a day...in the last month since his eating slowed down he's puked about 8 times total! Why oh why can't he eat AND not puke? *sigh*
Check with your
doctor first!