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11-26-2017, 10:27 PM   #1
CarolinAlaska
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NG tube and heartburn

My daughter is on an NG tube again with peptamen 1.5. She is having heartburn that ranitidine is not helping with. Would it be okay to do Maalox or Tums? It is not EEN. She just can't get enough calories to sustain herself without it right now.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
11-26-2017, 10:29 PM   #2
my little penguin
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how much rantidine is she on ?
Ds takes 150 mg x2 day
Sometimes ppi are needed instead with ng tubes

Tesscom handled this as well

Good luck
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11-26-2017, 10:54 PM   #3
Maya142
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Yes, Maalox or Tums should not be an issue - we found Maalox worked better.

She may need a PPI with the NG tube - reflux is very common with NG tubes, unfortunately. A G tube is better in that sense because it does not keep the sphincter in the esophagus open.

My daughter was already on a PPI when she got her NG tube. We added Maalox as needed, as well as Pepcid at night. That helped a lot.

You can also try elevating the head of her bed if she is only doing overnight feeds, or having her sleep on a wedge pillow.

Additionally, sometimes kids have trouble tolerating a dense formula like Peptamen 1.5. Switching to Peptamen 1.0 may also help, though then she'd need to have the feed run for longer to make up the calories. My daughter could not tolerate Peptamen 1.5 at all - caused nausea, heartburn, stomach pain and diarrhea. Peptamen 1.0 was better but she still had diarrhea.

We switched to Neocate Splash about a month later and no more diarrhea.

If the NG tube is going to be for the long-term, then I would consider a G tube - much easier on the kid.

How is J doing?? Is she still on just 6MP? Any talk of Remicade, considering she is losing weight and unable to eat enough?
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-27-2017, 07:45 AM   #4
CarolinAlaska
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Going to tag Maya142

how much rantidine is she on ?
Ds takes 150 mg x2 day
Sometimes ppi are needed instead with ng tubes

Tesscom handled this as well

Good luck
Yes 150 mg twice daily. I will talk of ppi with GI today.

Last edited by CarolinAlaska; 11-27-2017 at 08:02 AM.
11-27-2017, 07:56 AM   #5
CarolinAlaska
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Yes, Maalox or Tums should not be an issue - we found Maalox worked better.

She may need a PPI with the NG tube - reflux is very common with NG tubes, unfortunately. A G tube is better in that sense because it does not keep the sphincter in the esophagus open.

My daughter was already on a PPI when she got her NG tube. We added Maalox as needed, as well as Pepcid at night. That helped a lot.

You can also try elevating the head of her bed if she is only doing overnight feeds, or having her sleep on a wedge pillow.

Additionally, sometimes kids have trouble tolerating a dense formula like Peptamen 1.5. Switching to Peptamen 1.0 may also help, though then she'd need to have the feed run for longer to make up the calories. My daughter could not tolerate Peptamen 1.5 at all - caused nausea, heartburn, stomach pain and diarrhea. Peptamen 1.0 was better but she still had diarrhea.

We switched to Neocate Splash about a month later and no more diarrhea.

If the NG tube is going to be for the long-term, then I would consider a G tube - much easier on the kid.

How is J doing?? Is she still on just 6MP? Any talk of Remicade, considering she is losing weight and unable to eat enough?
She was just in the hospital for 5 days. MRE was not bad. Labs were good. They decided to take her off 6 MP for a 3 month trial to see what happens as it was suppressing her wbc count too much. They still doubt her original crohns diagnosis and are thinking that it is EDS related possibly. They are looking to send her to a motility specialist who is familiar with EDS. We don't know if the tube feeds will be long term. She did put her back on prednisone 5 mg.
11-27-2017, 08:01 AM   #6
Maya142
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Did the MRE show any inflammation?? Didn't she have a pillcam initially that showed inflammation and ulcers??

It seems really risky to take her off 6MP, though I guess it will tell you if it's Crohn's or something else. But that means they are essentially just waiting for her to flare - your poor kiddo .

What are they thinking in terms of motility? I know Gastroparesis is very common with EDS - have they done a gastric emptying test?

Sending hugs - poor J .
11-27-2017, 08:11 AM   #7
CarolinAlaska
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Did the MRE show any inflammation?? Didn't she have a pillcam initially that showed inflammation and ulcers??

It seems really risky to take her off 6MP, though I guess it will tell you if it's Crohn's or something else. But that means they are essentially just waiting for her to flare - your poor kiddo .

What are they thinking in terms of motility? I know Gastroparesis is very common with EDS - have they done a gastric emptying test?

Sending hugs - poor J .
MRE showed increased enhancement in sigmoid colon but nothing else. Yes original pill cam showed ulcers throughout, but two others have been normal in past 2 years. Yes, waiting to flare, but pred... I don't get it. No gastric emptying test yet. Honestly, they haven't checked for anything un-crohn's related ever except with original labs. I'm ready for a fresh set of eyes. I think a GJ tube may be in our future.
11-27-2017, 08:46 AM   #8
my little penguin
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Can she get a second opinion GI somewhere ?
Taking away 6-mp but giving pred is extremely confusing

Good luck
11-27-2017, 08:47 AM   #9
my little penguin
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Wanted to ask if they ever tested for Strep ?
PANDAs can cause a whole host of issues
Caused by undetected strep
11-27-2017, 10:39 AM   #10
Maya142
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Enhancement usually means inflammation, I think. So that would point to Crohn's. Plus, why are they giving Pred but taking away 6MP? That makes NO sense at all!! And such a tiny dose of Pred is weird too.

I would definitely get a second opinion. If you can't find a good pediatric GI in your area, then I'd go to an adult GI who specializes in Crohn's.

Generally they will make you try an NJ tube before going to a GJ tube. At least, we had to and M had to gain weight while on the NJ tube for them to be willing to the do the GJ tube.

Is she able to tolerate the NG tube feeds? Some kids with Gastroparesis can tolerate liquids through their stomachs so they do ok with NG tubes. M's Gastroparesis was severe enough that she could not tolerate liquids - she would throw up her NG tube feeds. They caused nausea, stomach pain, fullness and often vomiting, even at a very slow rate.

That's how we knew she needed an NJ tube.

The surgery for a G or GJ tube is not bad - a straight J tube is much harder and a much larger surgery. For a G or GJ tube, it's often just 1 or 2 nights in the hospital.
11-27-2017, 10:54 AM   #11
CarolinAlaska
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Can she get a second opinion GI somewhere ?
Taking away 6-mp but giving pred is extremely confusing

Good luck
We did get another look by another place a year ago, but they did the same tests and the same approach. I'm hoping the motility specialist will have some other tricks up his sleeve.
11-27-2017, 10:56 AM   #12
CarolinAlaska
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Wanted to ask if they ever tested for Strep ?
PANDAs can cause a whole host of issues
Caused by undetected strep
She was treated for strep many times in her first year of crohn's as she had recurrent strep after her diagnosis. It was usually caught early and treated. Not really looking that way lately.
11-27-2017, 10:59 AM   #13
Maya142
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We saw a motility specialist too - he had a few good ideas for us. M had already been diagnosed with Gastroparesis though.

I am sure the motility specialist will know to do a gastric emptying test. Make sure it is a 4 hour test - the 2 hour test is less accurate.
11-27-2017, 11:09 AM   #14
CarolinAlaska
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Enhancement usually means inflammation, I think. So that would point to Crohn's. Plus, why are they giving Pred but taking away 6MP? That makes NO sense at all!! And such a tiny dose of Pred is weird too.

I would definitely get a second opinion. If you can't find a good pediatric GI in your area, then I'd go to an adult GI who specializes in Crohn's.

Generally they will make you try an NJ tube before going to a GJ tube. At least, we had to and M had to gain weight while on the NJ tube for them to be willing to the do the GJ tube.

Is she able to tolerate the NG tube feeds? Some kids with Gastroparesis can tolerate liquids through their stomachs so they do ok with NG tubes. M's Gastroparesis was severe enough that she could not tolerate liquids - she would throw up her NG tube feeds. They caused nausea, stomach pain, fullness and often vomiting, even at a very slow rate.

That's how we knew she needed an NJ tube.

The surgery for a G or GJ tube is not bad - a straight J tube is much harder and a much larger surgery. For a G or GJ tube, it's often just 1 or 2 nights in the hospital.
Thanks for the info. It may just be the formula not being tolerated, or just the tube through her esophagus, but she was miserable with reflux/heartburn last night. I never really considered gastroparesis until recently because she usually tends towards diarrhea, and I thought that seemed to be incompatible. She doesn't typically have a lot of nausea/vomiting either. She mostly has no appetite, early satiety (feels full quickly), difficulty maintaining weight, etc. She also has chronic RLQ pain that has been worsening.

October 24 we switched seizure meds. She went through 3 weeks of weaning her previous seizure med. I wasn't sure what was new med side effects, what was weaning process, what was Crohn's. She did get two bursts of pred during that time that seemed to help through the process. The first was full dose, and the second the 5 mg. The GI doesn't like to give her more than 5 mg because she had osteoporosis. I don't get the giving her pred when she doesn't think she needs the 6MP. I guess if she is going to flare, the 5 mg won't hurt. She is getting joint pains coming back already, though. I hope it is temporary. Jae is attributing it to her menses right now. I hope she's right.

We also discussed Median Arcuate Ligament Syndrome and Mesentaric Artery Syndrome (something like that), but she didn't order any tests for this.
11-27-2017, 11:23 AM   #15
CarolinAlaska
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GI doctor says to try Prilosec OTC 20 mg 1 hour before bedtime. That will be our next step.

I am of mixed mind about the Maalox because I found the following at https://www.drugs.com/interactions-c...464-3778&types[]=major&types[]=minor&types[]=moderate&types[]=food&types[]=therapeutic_duplication&professional=1

Interactions between your selected drugs and food



Major
aluminum hydroxide  food

Applies to: Maalox (aluminum hydroxide / magnesium hydroxide / simethicone)

GENERALLY AVOID: The concomitant administration of aluminum-containing products (e.g., antacids and phosphate binders) and citrates may significantly increase serum aluminum concentrations, resulting in toxicity. Citrates or citric acid are contained in numerous soft drinks, citrus fruits, juices, and effervescent and dispersible drug formulations. Citrates enhance the gastrointestinal absorption of aluminum by an unknown mechanism, which may involve the formation of a soluble aluminum-citrate complex. Various studies have reported that citrate increases aluminum absorption by 4.6- to 50-fold in healthy subjects. Patients with renal insufficiency are particularly at risk of developing hyperaluminemia and encephalopathy. Fatalities have been reported. Patients with renal failure or on hemodialysis may also be at risk from soft drinks and effervescent and dispersible drug formulations that contain citrates or citric acid. It is unknown what effect citrus fruits or juices would have on aluminum absorption in healthy patients.

ADJUST DOSING INTERVAL: The administration of aluminum-containing antacids with enteral nutrition may result in precipitation, formation of bezoars, and obstruction of feeding tubes. The proposed mechanism is the formation of an insoluble complex between the aluminum and the protein in the enteral feeding. Several cases of esophageal plugs and nasogastric tube obstructions have been reported in patients receiving high-protein liquids and an aluminum hydroxide-magnesium hydroxide antacid or an aluminum hydroxide antacid.

MANAGEMENT: Some experts recommend that antacids should not be mixed with or given after high protein formulations, that the antacid dose should be separated from the feeding by as much as possible, and that the tube should be thoroughly flushed before administration.


References
1.Cerner Multum, Inc. "UK Summary of Product Characteristics." O 0
2.Wohlt PD, Zheng L, Gunderson S, Balzar SA, Johnson BD, Fish JT "Recommendations for the use of medications with continuous enteral nutrition." Am J Health Syst Pharm 66 (2009): 1438-67
11-28-2017, 12:17 AM   #16
Maya142
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We have had no issues with Maalox at all. No side effects and it works quickly for M. It's something we use for breakthrough symptoms - bad heartburn and reflux. Her PPI does most of the work though, we only use Maalox as needed.

Some of J's symptoms sound a lot like Gastroparesis - early satiety, weight loss, not being hungry. But I don't think I've ever heard of a GP patient without nausea. Not all of patients with Gastroparesis vomit but nausea is a probably one of the most common symptoms with Gastroparesis, if not the most common. But everyone is different, so who knows.

When does she see the motility specialist? I hope they can fit her in soon.
11-29-2017, 09:53 AM   #17
CarolinAlaska
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We have had no issues with Maalox at all. No side effects and it works quickly for M. It's something we use for breakthrough symptoms - bad heartburn and reflux. Her PPI does most of the work though, we only use Maalox as needed.

Some of J's symptoms sound a lot like Gastroparesis - early satiety, weight loss, not being hungry. But I don't think I've ever heard of a GP patient without nausea. Not all of patients with Gastroparesis vomit but nausea is a probably one of the most common symptoms with Gastroparesis, if not the most common. But everyone is different, so who knows.

When does she see the motility specialist? I hope they can fit her in soon.
She does get some nausea, but not daily. We are still waiting to hear about when or whether she will be sent to a motility specialist.

I'll keep Maalox as a last resort. I don't want to risk making things worse or making it look like she has gastroparesis if she doesn't really. Maybe it had to do with the type of formula or where the feeds mix with the Maalox. For example NG vs NJ tubes.
11-29-2017, 09:56 AM   #18
Maya142
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You could try Tums or Rolaids. Check with your doctor - he/she should be able to tell you if it's a real risk.

We have had all kinds of tubes - M has had a NG, an NJ, a GJ, and now finally a G and a J. We've always used Maalox. We used Peptamen Jr 1.5 and 1.0 and Neocate Splash through the tubes.
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