My daughter was recently diagnosed with Crohn's and she has a NG-feeding tube since 9/1. She has gained 8lbs and so happy. But, she keeps getting sick with sinus infections and high fevers. Anyone else having this problem with an NG-tube? We are hoping to get rid of it but keeps getting sick.
Mom of 5 year old
- Thread starter Chloeem
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an Eastern/Western doc once told me my allergies (years back) were really a result of upset stomach/stomach issues. She gave me herbs for the stomach and amazingly my allergies/sinus infections (104 fevers, etc.) were no longer an issue. Try to see if some probiotics may help balance her stomach as she fights this. I recently started with H. Trinity and found them highly effective in balancing my stomach and building immunity. Only take one a day. Hope she feels better soon. Nothing worse than a little one dealing with this. Good job on the weight gain!
Chloe is 5 and always has had problems gaining weight and poor appetite. She had CDIFF at 16months. She had an Upper endoscopy at age 18 months or so. At age 3 had extended tummy and constant pain. Admitted to CHOP for tummy full of stool. Ruled out Hirchbraums. GI told us after being diagnosed that her nerve was probably not fully mature due to Cdiff. Under care since then started with nutritionist and to help gain weight. Aug 2011 had Upper and lower endoscopy and colonoscopy. Found bowel inflammation. Started NG-tube feedings 9/1/11 and still has it. She tried Pentasa in beginnig and tummy aches. Then tried Colazal but major headaches. She was off of med and did not gain weight. Then given steroid(weanig off 2/21) to see how she responed. Beautifully ate more and felt great. Dr told us most likely Crohn's. Tried new med Lialda(horse pill) but could not get her to swallow. Tried all tricks. Was willing to try Pentasa again and has been responding well. But if you see bove she keeps getting sick. I think the tube is causing all these infecitions. Pediatrician feels this also. Voiced concern and fustration with nurse, I talk to her weekly. We have an appt for Friday was suppose to see end of March. Wish us luck!
Good luck! Wondering if you can break down pill and put in a banana shake or something like that? Or blended with liquid Ensure? I was a poor pill taker when young and it was as though my body fought it with reflux left and right. My mother ended up crushing ones she could and either blending in shake or banana w/milk, etc...
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Hi, it might be worth asking to get her nose checked - maybe she has a little infection that keeps recurring. I know you can get ointment antibiotic for inside the nose but not sure what age you can use it. You would need a doc appointment to ask I think. Hope she gets better soon
DustyKat
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Hi Chloeem and :welcome:
I'm so sorry to hear about your little one. :hug:
NG tubes can cause irritation/inflammation to the lining of the nose which in turn causes infection. The tube can then obstruct the flow of nasal discharge and this then causes the infection to back up into the sinuses. If this is what is happening it may also account for the fevers she is experiencing.
Are they planning on doing any imaging of the sinuses?
Good luck with appointment hun! :goodluck: I hope they are able to give you some solid answers!
Dusty. :heart:
I'm so sorry to hear about your little one. :hug:
NG tubes can cause irritation/inflammation to the lining of the nose which in turn causes infection. The tube can then obstruct the flow of nasal discharge and this then causes the infection to back up into the sinuses. If this is what is happening it may also account for the fevers she is experiencing.
Are they planning on doing any imaging of the sinuses?
Good luck with appointment hun! :goodluck: I hope they are able to give you some solid answers!
Dusty. :heart:
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Hi Chloeem,
I'm not sure if I can be much help, but I had an NG when I was 13 and I had problems clearing my nose, we used saline nose drops just to stop lumps of snot forming, and well, help lubricate the tube I guess. I don't remember getting many infections but maybe as a supplement to getting your daughter's sinus infection treated it might help to use something like a nasal drop as a way of keeping the flow of nasal discharge going, like Dusty said, and prevent further infection.
Keep on at the doctors and I'm sure you'll get her sorted.
Good luck!
Angela x
I'm not sure if I can be much help, but I had an NG when I was 13 and I had problems clearing my nose, we used saline nose drops just to stop lumps of snot forming, and well, help lubricate the tube I guess. I don't remember getting many infections but maybe as a supplement to getting your daughter's sinus infection treated it might help to use something like a nasal drop as a way of keeping the flow of nasal discharge going, like Dusty said, and prevent further infection.
Keep on at the doctors and I'm sure you'll get her sorted.
Good luck!
Angela x
We give the Pentasa in Hershey's chocolate syrup. The larger pills we practice swallowing with nerds and M&m's. I also bought a special cup to help. I hope once we get rid of the tube it may be easier for her.
Thanks so much
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Hi Sue,
I was really poorly and malnourished so I had the first one for about 6 months but when they took it out my symptoms flared because they dropped my steroids too quickly, then I had the second for about a year. I would not reccommend having one tube in for that length of time though, as mine got infected and went septic! They need changing every few months if it's going to be long-term. I opted for a PEG tube in my stomach in the end (age 15 at this point), as it was more comfortable and less obvious than the NG, and I had that taken out just before I was 17 I think.
Angela x
I was really poorly and malnourished so I had the first one for about 6 months but when they took it out my symptoms flared because they dropped my steroids too quickly, then I had the second for about a year. I would not reccommend having one tube in for that length of time though, as mine got infected and went septic! They need changing every few months if it's going to be long-term. I opted for a PEG tube in my stomach in the end (age 15 at this point), as it was more comfortable and less obvious than the NG, and I had that taken out just before I was 17 I think.
Angela x
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Salazapyrine (have I spelt that right) comes in a liquid form, it's similar to Pentasa (it's one of the 5-asa's), so I would ask your doctor about alternatives to Pentasa. Also swallowing pills is a big ask with an NG, not at all pleasant or easy!
Thanks we were given the ok to open the Pentasa and the Colozal. The others are time release and no compounding. Hoping to get her to swallow them in time. It is great to have this support system. I have been doing so much research on my own. My cousin has it but is in his 30's. I do bend his ear quite often for advice.
Hi Chloeem, I don't have any experience with NG tubes but just thinking...do they make hypo-allergenic tubes? Maybe she is having an allergic response to the ones she's using like a latex allergy or something. That may be completely stupid...wouldn't be the first time
Good luck and welcome!!
Good luck and welcome!!
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Dexky,
THat is a really good thought she could have a latex allergy going on. Definitly something to look into.
THat is a really good thought she could have a latex allergy going on. Definitly something to look into.
Chloe is ok tomorrow is day 6 of antibiotic. She hasn't had much of an appetite the last two days and has a sore throat. She had a bad headache last night. Luckily no temp. Not sure if virus or the tube. I have to check up with the dr in 5 more days.
How is Izzi?
How is Izzi?
Hi thinking of you before your visit tomorrow. Good luck and let me know how you make out. We are waiting to hear from the dr also. She is barely eating and tummy pain.
Same old lol! We go to the doc Tueasday and I am hoping to get some labs drawn to see if Humira has had any effect that way.
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Chloeem, V had the tube indwelling for the first three mos and had no issues.
But if your girl is prone to sinus infection and the tube is somewhat obstructing or impeding drainage, you may consider removing/inserting it each night as we do, I know Chloe is far younger than V was so may not be an option.
Now before V started removing/inserting her GI suggested a PEG tube in her stomach as we knew she'd be using feeds a long time. I was like, no WAY, she'll take it in and out. But many kids have the PEG and it eliminates the tube issue, if she will need the feeds long term.
But if your girl is prone to sinus infection and the tube is somewhat obstructing or impeding drainage, you may consider removing/inserting it each night as we do, I know Chloe is far younger than V was so may not be an option.
Now before V started removing/inserting her GI suggested a PEG tube in her stomach as we knew she'd be using feeds a long time. I was like, no WAY, she'll take it in and out. But many kids have the PEG and it eliminates the tube issue, if she will need the feeds long term.
