Posted By Posting
Sep 10, 2008
susiegal
Susiegal - Son Charlie born 11/15/07, diaganosed with GERD at 2 months
Current meds: zantac, prevacid, mylanta, reglan
Recurring Pneumonia
Hello - my little guy, almost 10 months, is on his second episode of aspiration pneumonia in 2 months. He is entirely tube fed, so it is definitely caused by the reflux. The cases are caught pretty quickly, the doctors are all over it and he responds quickly to the antibiotics and albuterol so treatment is not an issue. My question is about prevention - any ideas? He is upright for an hour after feeding and the formula (Alimentum) is not an issue as he usually tolerates it very well.
Sep 10, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
What reflux meds is he on? My son had issues w/ aspiration pneumonias, too. :( Have they done a scope, etc? Does he have anatomical issues? Has anyone discussed fundo?
Sep 10, 2008
jedd'smommy
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
If it were me I'd have the GI order up a Swallow study to see if the aspirtions are coming form an incoordinated swallow or form the reflux from below going into the lungs.

I'd also want an UGI done so you can check allt he anatomical parts and rule out an esophageal atresias chich can also cause aspirations. Surgery can fix these.

I's also do a PH probe or an Impendance probe. Thye are pretty dimiliar. They will tell you how far up the reflux is going.

So to recap...LOL A Modified Barium Swallow Study (MBSS) and UGI and a Probe either an Impendance or a PH one.

Sep 10, 2008
susiegal
Susiegal - Son Charlie born 11/15/07, diaganosed with GERD at 2 months
Current meds: zantac, prevacid, mylanta, reglan
He is on zantac, prevacid, reglan and mylanta. In the past 7 weeks we have been doing very well, gained 2 lbs (now up to 15 lbs, 8 oz. after previously gaining 2 lbs in 4 months). He has had a barium swallow which clearly showed he aspirates if the formula isn't thick enough. However, over time he was just getting too congested so we cut off oral feeds altogether which worked very well until this past weekend. No anatomical issues, he has had a few ultrasounds and all is in order. The pulmo mentioned a Nissen but not the GI (the GI is pretty conservative so I think we'd need to be desperate for that, since he's been gaining I can't see the GI suggesting it). He's a good sleeper most of the time, except when congested he will cough at least once a night and may vomit. His only other issue is a cleft palate which makes him more likely to aspirate. We are in a tough spot because he needs to gain weight and grow in order to do the palate repair but the reflux is hindering that.
Sep 10, 2008
jedd'smommy
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
Are you using a feeding tube of some sort since you said you havecut of fall oral feeds???

I would try advancing that tube to a NJ or GJ to get some relief.

If he is aspirating while swallowing a Nissen would do you NO good. The Nissen can only stop aspirations that come from BELOW.

Are you working with a SLP to work on oral feeding skills??? Are you thinkening even the tube feeds to help???

Sep 10, 2008
susiegal
Susiegal - Son Charlie born 11/15/07, diaganosed with GERD at 2 months
Current meds: zantac, prevacid, mylanta, reglan
We are 100% feeding via g-tube I do still thicken the feeds. We just got started on PT and OT. He qualifies for early intervention in NJ simply because he does not eat orally.
Sep 10, 2008
pattirow
I agree with Jedd's Mommy. I would see if they would advance his G tube to a GJ tube. The GJ will bypass his stomach so there will be less in his stomach to reflux. His stomach won't be completely empty since there will still be gastric juices etc that can be refluxed and aspirated but the GJ should help quite a bit.
Sep 10, 2008
susiegal
Susiegal - Son Charlie born 11/15/07, diaganosed with GERD at 2 months
Current meds: zantac, prevacid, mylanta, reglan
That's interesting. Never heard of it. Shows how useful this forum is! How does it compare to a g-tube with respect to caring for it?
Sep 10, 2008
jedd'smommy
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
It's exactly the SAME. No differnce in care. The only thing is the GJ must be oplaced in IR (interventioal Radiology) You can't [place the tube at home anymore nce it gets truned into a GJ.

If will look the same on the outside pretty much it's the inside piece that will look diffrent. It will be hooked and longer to be able to reach the jejunium.

If it falls out at home they normally give you a standard G to put in and then you make an appt to go in and have the GJ placed.

Another plus with the GJ is that you can vent the stomach/drain the stomach continuously with a Farrell Valve bag. Some kiddos can have any fluids in their bellys so they are on continuos G drainage.

The only down side to a GJ is once you go to a GJ you cna't dp bolus feeds anymore. the jejunium was not "made" to recived bolus amounts of food.

When a GJ is palced a child goes on continuos feeds straight intot he intestines. So you're gonna need a REALLY portable pump like a Zevex for that.

Let me know if you have any other tube feeding pump ???

There are a couple of tube feeders here.

I am going to try and find some pictures of GJs for you and start another thread with your name on it OK???

Sep 10, 2008
susiegal
Susiegal - Son Charlie born 11/15/07, diaganosed with GERD at 2 months
Current meds: zantac, prevacid, mylanta, reglan
Jessica - thanks for the help! We have an Entera Lite infinity pump so that will do the trick for continuous feeds. Susie
Sep 10, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry for all your troubles. i don't know much about feeding tubes but wanted to let you know I was thinking of you guys. our pulmo suggested the fundo early on too as well as a g- tube, but so far we have avoided them both.
Check with your
doctor first!