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04-13-2013, 09:42 PM   #151
LJS
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aahh, home by ourselves, doing it for the first time. DS threw up after the tube was inserted. Then, when I went to test the pH of the stomach contents, nothing came up through the syringe.. we may not end up doing this tonight. Waiting half hour and will test again, but if nothing comes up into the syringe, I'm removing the tube and starting again tomorrow night..not going to insert a new tube tonight
04-13-2013, 09:48 PM   #152
CarolinAlaska
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Sorry it didn't go so well. I hope that you get the good feedback when you recheck and that it goes better after this.
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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.
04-13-2013, 10:23 PM   #153
my little penguin
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Good news on the fecal cal....

Ljs sorry to hear about the tube
04-13-2013, 10:34 PM   #154
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Is anyone using PEDIASURE EN or any other Abbot Lab product for EN or supplementing?? If you are giving this to your Crohnie, PLEASE STOP. These products contain a known GI inflammatory ingredient: CARRAGEENAN which I believed has made my son VERY ill. He just had a 2 foot jejunal resection.
I totally agree that the effects of carrageenan should be studied further but everything I have read so far on the subject (thanks for the links MLP) is inconclusive in terms of the effects of undegraded carrageenan in vivo. Additionally, the studies that show that EEN reduces inflammation would indicate that carrageenan does not have significant effects in vivo. I am having trouble determining which of the studies on EEN have used formulas that contain carrageenan but given the ubiquity of carrageenan in the formulas (and yes I know it isn't in all of them) I would assume that at least some of the studies used formula that contained carrageenan.

Now, as with everything with this disease, what is ok for someone might not be ok for someone else. There could very well be people who are sensitive to carrageenan, that wouldn't surprise me in the least. But to make sweeping statements about a treatment that, compared to many of the other treatments, is so safe and effective is troubling to me. I would not want anyone considering EN as a treatment to be scared off because the formula they have access to, or the only one their child will drink, contains carrageenan.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-13-2013, 10:41 PM   #155
Twiggy930
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when I went to test the pH of the stomach contents, nothing came up through the syringe.. we may not end up doing this tonight. Waiting half hour and will test again, but if nothing comes up into the syringe, I'm removing the tube and starting again tomorrow night..not going to insert a new tube tonight
This happened to us. Try giving him a big glass of water and test again. Maybe the end of the tube is not quite far enough down to get to the stomach acids. We also had similar troubles when the tube was kinked. Maybe try pulling it slightly out, but not so far that he has to swallow it down again, and then put it back to the spot it should be. Doing this might get the kink out without having to reinsert the whole thing.

Last edited by Twiggy930; 04-13-2013 at 10:42 PM. Reason: typo
04-13-2013, 10:58 PM   #156
LJS
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So, after waiting half hour and no fluid, I tried flushing the tube with a little bit of water.. however, doing so caused the water to come out the pink cap where the guide wire is!! I ended up pulling the guide wire first (not how we did it in the hospital), capping that side, and then trying to aspirate some stomach juices and it worked perfectly. Not sure what the story is, b/c we were told not to pull the guide wire until AFTER testing the pH, but for whatever reason, it was causing the problem.

This gets easier, right?? Thankfully he's now sound asleep, but I'm totally stressed!! LOL
04-13-2013, 11:09 PM   #157
my little penguin
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Thanks Twiggy
The one I like is the study from the WHO with baboons on formula only--
No issues found at autopsy .
04-13-2013, 11:10 PM   #158
my little penguin
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Ljs
Before long you will be a pro
It just takes a little practice.
Glad it worked out
04-13-2013, 11:14 PM   #159
Twiggy930
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I'm not sure if we used the same type of tube as you are but we were instructed to pull the guide wire out before inserting the tube, in other words we never used the guide wire. The tube my son inserted was a very thin extremely flexible/floppy tube.

It does get easier. We had a bunch of minor problems the first week or so and then we got into a groove and all was good.
04-13-2013, 11:40 PM   #160
CarolinAlaska
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Glad you were able to work it out and that son is not stressed over it. Sorry you got stressed over it - I would have too. <<<HUGS>>>
04-14-2013, 02:28 AM   #161
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LJS
I'm so glad you firgered it out.
Someday you'll be the one helping others with advice about this.
Hang in there.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-14-2013, 09:50 AM   #162
LJS
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Thanks, all. He did great!! We were told that the guide wire helps push it through, that it's really floppy without it.. in any event, I'll pull the wire tonight before testing the pH. He did great, slept through the night and got up to 650 ml/cal. I lowered him from Peptamen jr 1.5 to 1.0, since he threw up yesterday.. will slowly add ml's nightly, then once he's doing 1000 ml's on 1.0 (1000 cal), will start the 1.5 up. Also, I told my son that if he has a sleepover or we have a late night out or something, and we miss a night, no biggie..want to take the stress out of it totally...he woke up this morning feeling great, and even ate breakfast! Since he really didn't have a huge number of calories overnight, he feels good without feeling over-stuffed..
For my 46 lb boy, he's supposed to get 1500 cal overnight..for those of you who did EN, does this sound about right? I think I read some of you did 3000 cal - that is double what my son will do.. is that b/c you were EEN and have older/bigger kids?
Thanks!
04-14-2013, 09:59 AM   #163
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Grace is 4 and on 1200 to 1300 cals a day. She's 40lbs.
Typically IBD'ers need one and HALF more calories than their piers.
04-14-2013, 10:23 AM   #164
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My son had 3000 cal per day (or night actually) but he was 10 years old and weighed about 60 lbs. Prior to getting sick he weighed about 80 lbs so the high calorie intake was to get him to gain some of the lost weight back. We were also told that the amount of formula the doctor and nutritionist prescribed was a minimum and that there was no maximum, meaning that he was free to take in as much extra formula as he wanted. Now I am sure this wouldn't be the case if he had been overweight, or there had been a worry that he would become overweight, but with Crohn's kids that is likely an uncommon scenario.

So happy to hear he woke up feeling great!
04-14-2013, 10:45 AM   #165
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Carole, are you going to keep her on supplemental EN? Stephen went from 3000 cal/day on EEN to 1500 cal/day (5 day/wk) (which he's still doing). He gained most of the weight the first six weeks of supplemental EN plus regular food (10 pounds during 6 weeks EEN, another 20 pounds next six weeks on supplemental EN).
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-14-2013, 11:07 AM   #166
Jmrogers4
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We did 1900 a day supplemental EN with the goal being to take in at least 3000 calories. Gained 23 lbs in 6 weeks but my son is 13 and was 77 lbs. We are now at 948 calories from supplemental EN and he is maintaining 100 lbs.

Glad you got the tube figured out I can imagine the frustration, soon you will be an expert
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-14-2013, 09:19 PM   #167
awmom
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That is great that Jaedyn is starting on a regular diet. As I think back to when Nico,did EEN, it took a while for him to get his appetite back and for his gut to adjust to solids. Her labs look great and I hope all goes well,from here on!
04-16-2013, 03:31 PM   #168
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Thanks my little penguin for sharing all the studies on the carrageenan topic. In my own experience, my son had used pediasure EN for 3 years (3-8 cans per night) which also lists the ingredient. Dr. Grovit, a NYC MD who specializes in Crohn's & nutrition, pointed out that if we do nothing else to change Ben's diet, then get the carrageenan out at least. This is the stuff they give lab rats to give them GI inflammation and ulcer.

My son seemed to be in remission from Crohn's over the past few years but this past Jan. had nausea that kept him out of school for 2.5 months....he ended up having a 2 foot long resection of jejunum. Lots of strange ulceration was in there So, imaboveital, this is why I am warning other parents to not use especially if for EN and in large daily amounts.
04-16-2013, 04:47 PM   #169
my little penguin
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Actually if you look at the studies -DEGRADED carrageenan is given to lab rats which has a different molecular weight (much lower) than UNGRADED carrageenan which is food grade. The difference in molecular weight is very significant.
THe studies were all over the map in terms of how much effect "ungraded" carrageenan can have and whether it can cause an issue in more sensitive individuals such as those with IBD.


Also one study found by the WHO organization that baboons fed nothing but formula with UNGRADED carrageenan for a prolonged period of time had NO damage to their GI tract.

MY point being that just because A happened to your child does not mean B was the cause.
B could have played a role for your child but may not for other children or even adults.

I "think" Imaboveital was trying to stress that we need to make sure there are proven scientifically accepted articles when blanket statements are made so that families who can not afford or kids can not tolerate other formulas do not avoid something they do not have to.
IBD is not that clear cut.

I think we need to stay on top of the literature /studies until a clearer picture is presented.

Presenting your experiences is very helpful for others so they can "ask their GI" how this information could affect their child. The blanket statement was the reason I posted the links so that others could read the various studies and "see for themselves" that studies have not be proven at least yet.


I am glad your child is doing better.
04-17-2013, 09:42 AM   #170
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Actually, the food carrageenan is also a problem..as it degrades in the gut. Many agree that it is a risk to humans, especially if they already have IBD. Why take chances? There are plenty of alternative formulas and supplements. There is a whole separate thread here on the carrageenan and IBD topic. I was upset when I learned only recently that it was in Ben's EN formula, as we did everything we were supposed to do for 3 long years, choosing EN over Remicade in the beginning, and continuing to tube feed even after he needed meds too. When he needed surgery (due to continual nausea) I thought it was odd, since his labs indicated he was doing so well for so long. If I had known, I would have had him on a different EN formula. I was only trying to share this realization and prevent possible damage in another kid.

Please listen to Dr. Grovit's radio interview on nutrition on the website NIBDINKIDS.com, the link is in the lower right corner of home page http://www.nibdinkids.com/

http://www.cornucopia.org/Cornucopia...acts042612.pdf
04-17-2013, 02:05 PM   #171
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Are you referring to the baboon study from 1977? 36 years ago? The study went on for 112 days? In normal, healthy non-IBD animals? My son did EN for over 1000 days AND, he has Crohn's Disease, so, already having inflammation and lots of it could definitely be a factor.

I think you should look at more recent research, and lots of people are trying to petition the FDA to remove carrageenan from all food.
04-18-2013, 07:34 PM   #172
LJS
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So, we've been doing EN for the last 6 days.. and we are doing great. Son gets his tube in first try every time, takes him like 5 seconds! The biggest issue has been aspirating the stomach contents, but I find if I flush a tiny bit of water through the tube, suck it out, and then aspirate, seems to work fine.

I'm slowly stair-stepping him up.. he should be on Peptamen jr 1.5, 1000 ml, for 1500 cal/night. but, since i have a fair amount of peptamen jr 1.0, i'm using that first, and we are up to 900 ml/night (tonight).. once we get to 1000 ml on 1.0, i'll go down a bit and start adding 1.5 (mixing the two together)..

he's a total rock star! and is feeling really good.. now, if I can get him to try the other nostril! I'm afraid of him just using the same one all the time.
04-18-2013, 08:16 PM   #173
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This is soooooo GREAT! So glad to hear it is going so well. Very impressive. FWIW my son used the same nostril the whole time. He told me the other one didn't work as well?!?!?
04-18-2013, 09:02 PM   #174
Tesscorm
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Same here... Stephen's used the same nostril for almost two years. Hasn't caused a problem.

So great to hear he's doing so well with it!!!
04-18-2013, 09:19 PM   #175
LJS
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oh, good to hear that you can use the same nostril! is there some time you have to wait, after eating/drinking anything, to insert the tube? my son has been driving me nuts, having a snack just a few minutes before we have to put in the tube.. wnat to make sure that is ok.
04-18-2013, 09:31 PM   #176
Twiggy930
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Eating just before inserting the tube shouldn't be a problem. Some people have NG tubes in dwelling and eat regular meals with the tube in. I suppose you might run the risk of some of the partially digested food blocking the tube when you aspirate the stomach acid. If that happens you should be able to flush the tube with water and unplug it.
04-19-2013, 08:02 AM   #177
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Stephen often eats just before starting with the tube feeding. My only concern has been that the food doesn't have time to be digested and moved along before the tube feeding starts. But, he's 18, he's knows best, right?! :facepalms:

For the most part, however, it hasn't been a problem. Once or twice, Stephen has gotten up with ab pains... can't say for sure but I have suspected that a heavy meal just before starting the feeding played a part!
04-19-2013, 09:32 AM   #178
LJS
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was filling up the bag last night with formula and it started overflwing.. aahh, the home health care company brought me 500 ml instead of 1000 ml bags to my house! They brought me a few 1000 ml to the hospital, so I was using those, but then they dropped off my supplies for the rest of the month at home, adn I didn't even notice, so they have to bring new supplies today. I just had to get up in middle of night to re-fill his bag. So much fun! but he got 850 ml in.. woo hoo! going for 1000ml tonight!
04-19-2013, 04:58 PM   #179
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So glad to hear that. 1000ml would be great for him.

Ask IF your company will call before each order.
The reason I do this is because it MIGHT take a couple orders to get it right.
They kept sending HUGE syringes that didn't even fit Grace's tube.
Well sure the first 10 made good water guns for my kids but after that it's just overkill.
It took 3 times of saying it was the wrong size.
I finally said call before you order to see what supplies I need. They do now.
04-19-2013, 05:09 PM   #180
LJS
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great idea Farmwife.. I know, those syringes are enormous, aren't they?? I ended up ordering the lubricant online b/c although they use the individual packages in the hospital, the home health company doesn't provide them. Thankfully I had one in my purse so went online, googled it and ordered it from amazon.. sheesh!
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