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08-29-2012, 11:10 PM   #1
farmerswifey
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Struggling on day 2!!

My 9 yr old son started his drinks yesterday, and all went well. I spoke to his class, they supported him and made sure he finished them. He has to drink 8 (9 if possible) popper or tetra drinks in chocolate or strawberry every day. They are called Paediasure...

He did well yesterday and he has had 3 today..he is full, he is not hungry, he has never been a big eater so he's struggling drinking them...I blended the last one so it was frothy and he drank that okay, I'm going to try adding ice, or giving him a glass instead of drinking out of the carton.

We are doing weekly and monthly incentives and just had another chat to him about how important it is for him to drink these, and that we are here to help him, giving him lots of exercise so he gets hungry.

He was in tears this morning saying he hates them and doesnt' want to drink anymore, and its day 2, we have 8 weeks of this!!!

But I wanted to ask is EEN primarily used for bowel rest and nutrition, so if he only drank say seven instead of eight, in the big scheme of things, would that matter?

What else can I do, I know the next step would be a nasal tube, but not so early on......thanks x
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Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
08-29-2012, 11:53 PM   #2
mickey
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i was told to avoid cold/ice in drinks, which can upset the stomach, so watch to see if this may make a difference for him as well. A thought....good luck! Perhaps a friend of his can try one as well and may like it...peer pressure helps!
08-30-2012, 02:53 AM   #3
Catherine
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Sorry, I don't know.

crohnsinct daugher O did EN drinks. Hoping that she will see your post now I mentioned her name.

How many calories are there in each drink?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-30-2012, 07:29 AM   #4
farmerswifey
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There is about 200 cal in each popper, but he has never been a big eater anyway so this is a big change for him..
08-30-2012, 08:40 AM   #5
crohnsinct
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Hi there..I got your pm but thought I would respond here so I didn't look like a slacker and for the benefit of anyone else reading.

I am so sorry you are having to go through all this. It is so hard and I admire these kids for even trying. I don't know what you have tried so forgive me while I ramble.

First let me say that it is so hard when it isn't necessarily a taste thing but an I'm not hungry thing...hard to overcome that.

My daughter did 6 weeks exclusive EN and then another 3-4 with small amounts of food being introduced. She was in school at the time so it was difficult to sit at lunch. Her guidance counselor gave her a pass to come down to the office and drink her shakes whenever she needed to (every 2-3 hours)...that was a huge bonus and helped with the temptation of all the food and goodies in the cafeteria. If your son is in school maybe try something like that. If he is still at home, maybe have a special show he usually isn't allowed to watch reserved for "shake" times. We did weekly treats as well but at the beginning I would say a daily treat might work better. I just remembered...my daughter was not allowed anything other than water BUT I did ask the doc about chewing gum and he O.K.'s 1 piece a day. That was huge for O as I don't allow chewing gum. Her sisters were so jealous. I don't have a fundamental issue with gum it is just my girls chew like cows and it grosses me out!


Serving the drinks cold helps but ice never helped my daughter and as someone else here says freezing them changes their composition and they are no longer useful so I would just stick with cold. My daughter drank them with a straw as they went down faster that way and bypassed the taste buds some. We found McDonald's straws are very large and were the best for getting them in quickly. Some people say to cover the opening or cup etc (plastic wrap) so the smell doesn't come out and that helps with the awful taste...I think that is why so many have gone to the juice box type containers but they have a little straw and didn't help O. It does help some because it doesn't look like a lot in those little boxes.

For my daughter, we were watching everything she ate and forcing more and more food down her throat so the shakes were welcome in that she just had to drink and not hear us. She was very underweight (still is a good bit underweight) and a triathlete (but she dropped cycling at dx) but her doc just asked for 6 shakes at 250 calories each. We were all surprised at so few but it worked. She didn't gain weight but she maintained and her blood results etc really improved. I would ask the doc how negotiable the number of cartons is (he he terribly terribly underweight and does doc want weight on now and fast). It might be better to start off slower and then increase. While my daughter just needed 6 by the end she was drinking 10...she increased all on her own due to hunger. I think as she got better she got more hungry. Also, they are so used to avoiding food due to affects of the disease it takes a while for them to change their mind set.

We approached the EN on a bit by bit basis. First day was lets see if you can drink one shake...yeah? great, think you can make it through the school day...great..Next day, wanna give another day a try? We never told her exactly how many weeks etc because it could be overwhelming. Also, we let her drink half a shake if that is all she could choke down and then another half an hour or so later...

The key for our daughter was not stressing over it and being as flexible as we could but letting her know this was necessary and a medical treatment.

She had a ton of support, teachers, pastor, friends etc cheering her on and telling her how amazing she was for doing this and that made her feel so good and I think a little pressured to not let them all down...I will pay for the therapy later.

She was also petrified of the ng tube. There is a great video some one posted of a girl inserting a tube. It actually might be on my daughter's thread...I will see if I can find it for you. I thought it was great she watched it and was horrified. I know many kids here have used the tube and say it is no big deal so if he has to go that route I would definitely give it a try as EN has been so helpful to so many I would hate to see you abandon it because of fear of the ng tube.

EN worked for O. She is doing great. Blood results just keep improving. She officially came off mid July and has been great ever since.

I wish you luck and please feel free to ask any questions anytime. Oh and have you read the Kids on EN thread in the parents forum? That is another good one.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
08-30-2012, 08:54 AM   #6
farmerswifey
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Thank you so much for that info, I really appreciate it. We'll give it another go tomorrow, he had his 8 drinks, yesterday, and 6 today..he is supposed to have 8. Going from a little eater to this thick milky food is a challenge, but we will help him as much as possible...We are doing weekly and monthly incentives but I might do daily..

Thanks again x
08-31-2012, 11:03 AM   #7
crohnsinct
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How's it going?
09-01-2012, 03:57 AM   #8
Twiggy930
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Just saw this thread and wanted to let you know that my son used a NG tube and he found it no big deal. In fact, if you asked him he would, without a doubt, say he would rather consume the drinks via the tube than have to drink them. He was 10 when he did it and it literally took him 13 seconds to insert the tube every night. He didn't even gag when he did it. Just wanted to let you know this as we were very worried about how hard it would be to insert the tube and we were stunned at how easy he found it.

Hope it gets easier.
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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.
09-01-2012, 04:53 AM   #9
farmerswifey
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How's it going?
Thanks for following up! We are doing not too bad....he's already sick of his "diet" and wants to chew something lol so he eats a couple of lollie snakes each day and some jelly.

We are doing a thing called "a debrief" where if he is worried or upset or cranky about anything we can sit quietly and talk it out. Just the two of us, no interuptions, just to let it all out. We did it today and he said "he was sick of the diet already, but knew why he has to have it".

He has been having the 8 shakes a day, we blend two first thing in the morning in the blender before school, that makes them like a milkshake, he takes 3 to school, then in the afternoon he has 2 more in the blender than one in the blender at night. We have a special big blue cup that he drinks out of and he likes that, he can see through it.

Heaps of praise "you are doing so well, good on you, keep going", lots of hugs, and we realise he will have good and bad days...also we are making sure he has exercise every day so he builds an appetite and wants to drink. Although not too much that he burns it off because he hasn't put on any weight as yet!

@ Twiggy, did you son have the tube in at night or the day as well?? So he was able to work it ok then??
09-01-2012, 10:13 AM   #10
Twiggy930
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My son inserted the tube at bedtime and then we hooked it up to a pump and it went in while he slept.

My son found that the first few days were the worst for wanting to eat. After about a week it got easier, almost like the habit of eating was broken.

Is he allowed clear broth? My son really liked having some broth as it was the only way he could have that savory taste.
09-05-2012, 05:52 AM   #11
farmerswifey
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He is allowed jelly and lolly snakes so not really savoury but at least a bit textured!!
09-05-2012, 09:15 AM   #12
Tesscorm
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Just saw this thread and wanted to wish your son luck!!! It's such a tough treatment, especially for young kids! Ugghh! My son also did six weeks of EN but he started just before turning 17, so I'm sure his age/maturity helped him understand the necessity.

Like Twiggy's son, my son used the NG tube overnight (actually, has continued EN as a maintenance treatment, with food added back, for over a year now). He also found it very easy to learn and takes just seconds to insert. He inserts the tube just before bed, formula is ingested overnight and he removes the tube in the morning. Although I have some Modulen (drinkable) at home for him to try, he has no interest as he really does find the tube and overnight feeding so much easier. He was also allowed broth which was a big help - he could take some to school to have at lunch with friends and some for dinner. But, while broth helped, I think the biggest help was simply distraction...

I think the video clip Crohnsinct is referring to may be in the Kids on EN thread in the Diet section in the Parents subforum.

Good luck to your little boy! It's such a challenging treatment for all, especially younger children!
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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
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