Tips on coercing teen to try ENT

Hi all. I haven't been on here in a bit & wow have things been crazy. We switched hospitals, GI doctors, biologics & other meds. We are now 'humi' club members. I read lots of excellent tips & tricks for humira on here.

So back to ENT--when I first started posting there were many who suggested we look into tube feeding but our dr never seemed concerned. Well our new dr (who seems to be on top of the game) highly suggests it. Ok so how do you convince a 13 year old middle schooler to try tube feeding? The Drs office said they could place the tube & just leave it but dd is worried about school & getting made fun of. I totally understand her concerns but from the mommy point of view I think it's a win win since it will help her symptoms & help her grow & catch up. She is a very anxious child, set in her ways.
Help.

So my kiddo was VERY against the NG tube at first. She tried very hard to drink formula (Peptamen Jr) but could not drink enough to maintain her weight, much less gain any. She was severely underweight and malnourished by that point, so her GI insisted on an NG tube.

Because M was so underweight, she was admitted to the hospital. The first night the nurse placed the NG tube. She was not happy. It was uncomfortable and her nose and throat were sore.

The second night was better - she placed the tube by herself and her throat was less sore! By the third night, she did it easily. Within a week, it took about 10 seconds. She just placed it before bed, did overnight feeds and then pulled it out before school. It was surprisingly easy and not as intimidating as we thought it would be.

She was in high school and very clear that she did not want to have the tube in all the time. Apart from the first few days, which were tough because she was uncomfortable, it was not bad at all.

They had to admit her to monitor for Refeeding Syndrome, but if your kiddo isn't very underweight or malnourished, they can teach you to do it in an outpatient appt.

Later she developed Gastroparesis and had to switch to an NJ tube. That goes all the way into the jejunum, so cannot be placed nightly. It has to be placed by an interventional radiologist, so once it's in, it stays in.

She was not a fan of the NJ tube. By then she had lost even more weight, but boy, she fought it. She was SO stubborn and eventually got down to 80 lbs, a total of 25 lbs down from her normal weight. Her GI insisted on the NJ tube, but M had turned 18, so she really, really resisted. She was admitted multiple times for her weight and finally, after M was told her organs could fail if she didn't gain weight (she had already developed Refeeding Syndrome and an arrhythmia), she agreed.

She had that for 3 months and went to school with it. She did get a lot of questions but she dealt with it, with the help of her psychologist. Kids weren't mean - she wasn't teased or anything - but they were curious. And she was very self-conscious with it.

But it did work wonders!! She gained all the weight back and then some and she went from being so exhausted and malnourished to being a normal teenager! She had been stuck in bed all day because she was so weak - all that changed once she was getting good nutrition.

Eventually we switched to a GJ tube - surgically placed - which is much less noticeable (you'd never know it was there, unless she showed it to you). Some kids with Crohn's do have G tubes, but generally an NG tube is tried first and if it's clear the kiddo will need tube feeds for a long time, then a G tube would be placed. It's not a difficult surgery, but it is a surgery.

My daughter would say that the NG tube wasn't bad at all. It's a teeny-tiny tube - they give them the infant size (6Fr) and it's like spaghetti - soft and flexible. She inserted it while drinking water, so it went right down. Once you get the hang of it, it's quite easy.

She much preferred being able to insert the NG tube every night vs. leaving the NJ tube in. Many teens, even ones your daughter's age, are able to insert the tubes themselves.

It did help a lot that she was seeing a psychologist, who helped her deal with all this. She was very anxious about the tube (well, all the tubes she's had) and it was an adjustment. She was especially nervous about going to school with the NJ tube, but honestly, it wasn't so bad once she got used to it.

The other option, of course, is to drink the formula. Some kids are able to do it, others are not.

My daughter now says that the NG tube was WAY better than trying to drink the formula. It was much easier for her to deal with.

I will tag some other parents whose kiddos have used EEN or EN: Clash, pdx, Tesscorm, my little penguin, crohnsinct, Kimmidwife

Can she drink it orally ???
Ds is 13 and has done een many times
He drinks his orally without any tube
When not on een he uses it as a supplement to keep his weight and growth normal
Kids can use
Kids boost /pediasure (while protein)
Peptamen jr(broken proteins )
Neocate jr /elecare jr (elemental amino acid )

Kids tolerate them differently
Our GI thought it would need to be by tube as well
But was willing to let Ds "try" to drink it all

He has been drinking either peptamen jr and now neocate jr for 5 plus years

Good luck

my little penguin said:

Can she drink it orally ???
Ds is 13 and has done een many times
He drinks his orally without any tube
When not on een he uses it as a supplement to keep his weight and growth normal
Kids can use
Kids boost /pediasure (while protein)
Peptamen jr(broken proteins )
Neocate jr /elecare jr (elemental amino acid )

Kids tolerate them differently
Our GI thought it would need to be by tube as well
But was willing to let Ds "try" to drink it all

He has been drinking either peptamen jr and now neocate jr for 5 plus years

Good luck

Click to expand...

I agree. Had to go through EEN at 15, but i convinced my doc i could drink it to avoid problems at school etc...
He let me try and I had great results drinking it.

does it have the same consistency as the boost/ensure? if so then I don't think it will work orally as she couldn't/wouldn't drink those when offered. She said it was because it reminded her of milk & she is not a big milk fan. I will give her the option but I don't think she will be able to keep up with the great amount she will probably have to drink.

how soon did you all see a difference? does the pump run all night or do you have to stop it? if it stays in all the time, do you just tuck it in your clothing & go about your day? I have read about many having throat irritation--does it seem to help if it just stays in? I sincerely wish that this would've been addressed when she was first diagnosed & was severely malnourished/underweight but I cant go back & change that now.

I told her if she misses the "puberty window" that she may not be able to have kids when she is older & she promptly told me she would adopt. Then I said wouldn't it be nice to be nearer the same size as your friends & she said she likes being small. (I think she is going to be a lawyer--she loves to argue & always has an answer & the last word--no offense to any lawyers on here haha!!)

thanks so much for your responses--I am really struggling with this & it helps to talk to those who have done it before.

I would not threaten her - my daughter always viewed the NG tube as a threat ("If you can't gain weight, then you have to get a tube") and as a "bad thing." It was not bad - it was just something she needed to be healthy.

I don't mean this judgmentally, I promise - we did the same thing - but I wish we had been more positive about it because she really did need it. The same way she needed Remicade for her Crohn's, she needed a tube for her weight. It is what it is - a treatment, and nothing more.

So with the tube, yes, if she kept it in, then she'd tuck it behind her ear and go to school with it. If you PM me, I can show you a picture of my girl - your daughter might like to be able to see that.

Throat irritation was a problem for us with the NJ tube since it stayed in all the time (and it's thicker than an NG tube). We never found a good solution to that except throat lozenges.

With the NG tube, since she inserted it every night, she did have some throat irritation, but not as much as when it stayed it.

If you're using it for a long time (say months to years) they may put in a G tube once it's clear that she needs it long-term.

Peptamen Jr/Pediasure Peptide are about the same consistency as Ensure/Boost but they taste a lot worse. There's no harm in trying drinking - your GI can probably give you samples. My daughter was able to get used to drinking 2 Peptamen Jr a day - that just wasn't enough for her to even maintain her weight.

I would focus on being healthy when you talk to her. Tell her she needs energy to be able to go to school, play sports (or whatever hobby she has), see her friends. If she continues to lose weight and stays malnourished, she is going to get sicker.

And it's not just size-wise that growth is an issue, she needs calories for brain development. My daughter got so underweight that concentrating became hard. She was so tired, she couldn't think straight. She couldn't even really get out of bed.

And then once she was in the hospital, had Refeeding Syndrome and was 80 lbs, the doctors started telling her if she lost more, her organs would fail.

Her electrolytes were so messed up, it took months of phosphate supplements before she was normal again.

Being underweight and malnourished is very serious. My daughter was much older (17-18) when this was a problem, but if she was younger, I would have insisted. It can be life-threatening and there are no negotiations there.

In fact, once my daughter actually understood how dangerous it could be, she cooperated (even though she HATED the idea of having an NJ tube in all the time). And very quickly, she started feeling better and realized the tube was actually a GOOD thing and was going to help her.

The pump - generally it will run all night or till the feed is done. There is a little backpack that comes with it, so she won't have to be hooked up to an IV pole. We put the pump in the backpack at night, and hang it on an IV pole. That way if she has to go to the bathroom, she just grabs the backpack.

I would check out the Feeding Tube Awareness website - they have a good parents' guide.

Second the not punishment
Ds was 7 so a lot easier

Formula was medicine not food period
So just like his other meds it had to be taken period
Not up for discussion similar to seat belts or other non breakable rules in the house
He did however get to choose how the medicine (formula went in)
He could try to drink it
Or
Get a tube
It was just a method of getting it in
Not good or bad

Ds cried for three days straight when we started
Hated it took over two hours to drink one 8 oz box
But he knew he had to get it in some way

Did the same crying at 12 when he was switched to elemental (which is foul -most past toddler age can't drinknit orally) but he did to avoid the tube

From your post your dd seems to think it's a choice
Her GI needs to explain its no more a choice than Remicade etc....

coolbeans said:

does it have the same consistency as the boost/ensure? if so then I don't think it will work orally as she couldn't/wouldn't drink those when offered. She said it was because it reminded her of milk & she is not a big milk fan. I will give her the option but I don't think she will be able to keep up with the great amount she will probably have to drink.

how soon did you all see a difference? does the pump run all night or do you have to stop it? if it stays in all the time, do you just tuck it in your clothing & go about your day? I have read about many having throat irritation--does it seem to help if it just stays in? I sincerely wish that this would've been addressed when she was first diagnosed & was severely malnourished/underweight but I cant go back & change that now.

I told her if she misses the "puberty window" that she may not be able to have kids when she is older & she promptly told me she would adopt. Then I said wouldn't it be nice to be nearer the same size as your friends & she said she likes being small. (I think she is going to be a lawyer--she loves to argue & always has an answer & the last word--no offense to any lawyers on here haha!!)

thanks so much for your responses--I am really struggling with this & it helps to talk to those who have done it before.

Click to expand...

I remember it was quite a shock for me as well to go through this, I wanted to refuse to do it, but then I convinced myself I needed it to grow, take weigh, and turns back 'normal' and healthy.
I think you should try to insist and convince her that she needs it for herself and for her future. I'm sure your daughter want to be as normal, as tall and as healthy as her friends.

Regarding the taste, I used Modulen IBD, I hated the taste the first time I drank it, so I used some techniques like refrigerating it (cold the taste is better) and I didn't breath with my nose just after I drink so you can't smell it. I know it's sounds crazy but it was very effective, in fact I been on it for more than 6 months and I got very used to it.

I don't know how much you should drink with other formulas, but with Modulen you need around less than 3 liters to get your daily amount of calories which is quite doable (I divided it like half a liter for breakfast, 3/4 L lunch, 3/4 afternoon, 3/4 dinner).

The results were terrific like most of my symptoms disapeared in one month, and I gained 25lbs in 3 months. Obviously that motivated me a lot to continue, it's a big effort but I was very proud I made it at the end.

Second the taste
Ds drank peptamen jr for over a year
GI changed him to peptamen jr with prebio
He hated it at first
Then got used to it
Was inpatient they only had regular peptamen jr
Which of course he instantly said he hated and wanted his normal version of peptamen jr with prebio

They can get used to anything

you all are absolutely right--I have made this into a choice for her. I am going to make the appointment with the clinic & just get it done. I am being too lenient & worried about making her mad/upset. She will get over it. I do appreciate you all telling me the truth & the wonderful info. I feel like I am talking to friends & you tell it like it is.

My daughter was also able to get used to the Peptamen jr. taste - her issue was she just couldn't drink enough to gain weight. But after a while, she really didn't mind the taste much and even "missed it" if she skipped a shake.

Neocate on the other hand -- no matter how hard she tried, she could not get it down.

We were fortunate in that her GI really insisted. She was (and still is) a VERY stubborn teenager (now young adult) and would not listen to me. But she did listen to her GI. Sometimes it helps to hear it from someone who is not Mom!

I agree - do not make it a choice. Let her choose if she wants to drink it or use a tube, but get it into her.

appointment is Friday. Pray all goes well. thanks for all the great insights/advice.

Good luck - let us know how it goes!

I hope it all goes well.

Grace has had her feeding tube (n-gtube and than g-tube) for 5 years plus.
It's been a life saver.

She still drinks it orally but the tube comes in handy when she can't or is sick.

Sorry I didn't respond to this earlier. My daughter used an NG tube for several months--for 2 months she kept it in all the time, and then she learned to put it in and take it out each day and did this for a couple more months. I hope your appt Friday went well, and please let us know if you have more questions.

My daughter didn't have a choice about the tube; she was so malnourished that our doctor gave us the choice between a tube or TPN, and TPN seemed much riskier to us so we never presented that as an option to her. But we did offer her many rewards for using the tube, and those helped a lot.

hey all, so sorry it has taken me so long to get back. It has been an eventful few days. It took about 1 1/2 hour for the tube to be placed Friday. Daughter is great with the stalling technique but it is in now. She was very self conscious about it--kept a teddy bear in front of her face at the restaurant we ate at after till she figured out that nobody was paying attention to her. Throughout the weekend she became more adjusted to it & even learned how to do the entire pump/feeding process herself. The goal is 840ml each night. She said it really bothers her throat but popsicles are helping She is still able to eat lunch & dinner. We are trying to get the time down so it can be finished in the mornings when she starts school next week. Anyone have any tips on how to handle school and the tube--I told her that people would probably be curious but that there will also be some mean ones. She is so tough & such a trooper!! I am so very proud of her. :kiss:

Glad it has gone well so far!! She really is a trooper!

My daughter was in high school. No one teased her but kids did ask and they did stare. She was self-conscious about - VERY self-conscious at first, but it got better. Kids got used to it and stopped asking after the first week or so.

I emailed all her teachers in advance so that they'd know (I was also a teacher at her high school so that helped). I also made sure to tell the school nurse.

What size is the NG tube? You want the smallest size possible -- a 6Fr. Sometimes they put in an 8Fr - my daughter found that much more uncomfortable than a 6Fr, which is the infant size.

In terms of throat issues - things like popsicles, throat lozenges, tea. My daughter was most uncomfortable for the first two-three days with the 6Fr tube and then she felt a lot better. After a while, she says she didn't even notice it was there. She didn't like eating with it at first, but got used to it.

But with the bigger tube (for us it was an NJ tube - which was 8Fr since they don't come in a smaller size), she was uncomfortable the whole time she had it (which was 3 months). We eventually switched to a GJ tube in her belly, because it was clear she was going to need it long-term.

I am in the process of contacting the middle school to set up a meeting about the 504 & to give them a heads up on the tube.

She has a 6FR--I think it is getting better--just takes some time to adjust.

Definitely get a 504 plan!!! It's best to be prepared, just in case she does flare and she will need extra absences for infusions/doctor's appts. anyway.

If it's a 6Fr, then there's not much you can do. It does take time to adjust but it WILL get better!

The first week was definitely the hardest for my daughter. She inserted hers every night -- that may be an option once your daughter is more comfortable with the tube. It was surprisingly easy - she did it while drinking water and it went right down. There are videos online (Youtube) if your daughter would like to watch a kiddo do it. At our children's hospital, kids as young as 7-8 insert their own tubes.

That way no one at school has to know. It also reduced throat irritation for her since it wasn't in ALL the time.

Tell her to hang in there!!

thanks so much--her school is really good about working with us & all the teachers/counselors were so understanding last year. I hope its the same this year.

I am hoping she can eventually get to where she can take hers out & in. That would be so much easier but I will wait till she is ready before we go there. We watched one youtube video of a young lady that reminded me of my daughter--she was so cute & at the end she declares that she is an expert which was totally precious. Oh and her mom farts in the middle of it for comic value--haha!!

We were talking about going back to school the other night & she said she hopes it will be better by starting with the tube in & maybe getting all the ?? out of the way instead of showing up mid stream with it. I just hope everyone is kind--it has definitely made her more empathetic to others who may be going thru things they cant control.

Fingers crossed. You could get her guidance counselor involved as well. My daughter explained it very simply - she had Crohn's (or IBD) and Gastroparesis, and her stomach did not work properly, so she could not eat enough or absorb enough calories. So she needed a tube for nutrition. That's it.

She got hers towards the end of her senior year of high school. It wasn't as bad as she was expecting. The first day was scary, but each day was a bit better.

We also bribed . She was so underweight and refused the NJ tube for so long that while she was in the hospital, my husband was SO desperate to get her to accept the tube since we were being told her organs could start failing, that he offered her a kitten :ybatty:!

I would have offered her a shopping trip NOT a kitten, but obviously M jumped at the chance of a kitten.

So a couple months after getting the NJ tube, once she was gaining weight and doing well, we got a kitten. Who is now a very chubby, badly behaved cat that she adores .

my girl would be all about a kitten but even more so about a corgi (dog)--I am holding that ace in the hole until desperately needed--haha!! She would turn her nose up at a shopping trip but she is all about dogs. She volunteers/works at our local animal shelter & absolutely loves it!! She hasn't been since the tube b/c she is worried about puppies getting hold of it--I hope she will go back soon. We recently acquired my parents dog (that they actually got my daughter to live at their house) when they became ill & that has helped a bunch. She digs, chews & eats like a horse but if it helps we overlook that.

Sounds like things are going pretty well with the tube--so glad to hear it!

My daughter would have never considered trying to place her tube herself for the first few months she used the tube. But as time passed, and as she became more comfortable with the tube, she started thinking about it. This is the video that helped her the most:

https://www.youtube.com/watch?v=YJIFOCbPTjo

(We didn't do everything exactly like in the video, but I think the matter-of-factness of the girl in the video really helped my daughter.)

We offered cash as our bribe--$20 for the first time inserting her own tube, then $10 for the next night, and then just a small amount once it was easy for her. Putting the tube in turned out to be pretty quick and easy for her, since she knew exactly how it should feel from already using it for so long.

Good luck next week with the start of school. And I hope that the tube feeding really helps with your daughter's symptoms and growth. It was a highly effective treatment for my daughter.

The tube should be ok with puppies as long as she is careful. Can she tuck it behind her ear and make sure it's taped really well? She could also tuck it into her shirt so it's out of the way.

As she gets used to it and gets more comfortable with it (and less scared of it getting pulled out), I'm sure she will be fine going to see the puppies!

There is a good post about taping and the various kinds of tapes used on this blog:http://agirlandhertube.blogspot.com/2011/11/adhesives-part-1-adhesives-taping.html

We ended up using Hypafix, since Duoderm and Tegaderm irritated my daughter's skin.

There are also stickers (on medical tape) which she can use: https://www.kidshopechest.com/feeding-friends-stickers.aspx

She might be a little old for them, but depends on the kid. My daughter used some of them (only the ones she decided were not too babyish) and she actually got a lot of compliments on them. It sort of took the attention away from the medical aspect of the tube.

They're also very gentle on the skin, which helped a lot since she has such sensitive skin.

PDX--that was the video we watched also--isn't that young girl amazing?

Maya142--thanks so much for the info about the tapes. I just love when people who actually use products post their experiences with them--it helps so much. Just like this wonderful forum!!!! Her tape is starting to look a little ratty so we may have to fix it--I was kinda hoping to wait till next week--we have another appointment with the dietician & I wondered if they would switch sides?? We are up to the feeding dose (840ml) that they are wanting her to be on--she said her tummy felt too full this morning but then she got a back rub from her dad & forgot all about it--Love her precious heart so much!!

Hi all. We had a very rough night last night. She was up multiple times with stomach pain & bloody loose stool. We were told she could eat whatever she wanted at lunch & dinner (which from reading forum seems totally inaccurate). I am going to start feeding very bland/liquid from this point on so hopefully this will turn around. We have appointment Tuesday with nurse & dietician (who I am tempted to tear into verbally). It is so frustrating to just be handed the equipment & formula with very little instructions except a one page brief synopsis of the appointment. We seemed to be doing good at first but slowly more fast food/junk crept in.
We start school this Thursday & there is no way she is able to stay in class & learn if she doesn't get any better than now. I have researched about online school but my child is not self driven at all & the biggest procrastinator ever. My hubby & I have to work so we can't stand over her & make sure it is done. Anyone else have any experience with this?

So remind me - how long has she been on Humira? Is she getting it every two weeks?

Humira can take a while to kick in - up to 6 months. So you may just need to be patient.

Is she also on MTX?

It may be that she needs Humira weekly to keep the disease under control.

Generally, formula is given for one of two reasons. It's either given as a supplement to help with weight gain and growth (and that is usually NOT 100% formula - it's a certain amount of formula and as much food as you like) OR it's given as a treatment like steroids to induce remission - that is usually either 100% formula or at most, 20% food and 80% formula.

It sounds like from what you were told, she is doing this as supplemental EN for nutrition and weight gain and growth, not to induce remission.

If it was to induce remission, then she would be either on ONLY formula or very little food and roughly 80-85-90% formula.

I would talk to the nutritionist and figure out what is going on. I would also talk to her GI and tell her your daughter's symptoms.

Make sure she has a 504 plan. We did a lot of half days or part of the day. My daughters were very motivated to TRY school, so they'd often miss the morning but go in the afternoon. Or they'd go and go to their important classes and then to the nurse to rest.

Our rule was TRY school (unless you are in excruciating pain, have fever, can't leave the bathroom or are vomiting) and if it doesn't work, go to the nurse. On really bad days, I'd take my daughters home half way through the day (I'm a teacher at the high school, so it was easy for us - I'd just run them home during lunch).

My girls loved school so there was no need to enforce our rule - they always wanted to go!

We did do homebound school a couple times but that is obviously not ideal and your school district will often fight it. And my daughter HATED it - hated not seeing her friends, being at home etc.

I would say let her go to school now, and help her work on what she misses at home. She will enjoy seeing her friends and keeping things as normal as possible is best.

And I would talk to her GI ASAP and tell her your daughter's symptoms. There needs to a change in either her med regimen or formula regimen.

We always said, if you don't feel well, you can go to the nurse and that helped to have an "out" if they were feeling really awful.

Is the formula as a treatment or for weight ?
Weight it doesn't matter
Treatment then most only allow 0-10% food per day
You could try homebound ???
School district provides a teacher a few hours a week to cover her topics at school

She began Humira on 7/7 & does bi-weekly doses--also taking azathioprine 10mg & Prilosec 20mg & prednisne 5mg which ends Tuesday.

She is taking formula for nutrition & weight gain.

I have the forms for the 504 but haven't met with school officials yet-- they were really good about working with us last year even with no 504 in place so I don't foresee any issues.

She went to the open house at school last week & went pretty much unnoticed till a loud mouth parent embarrassed her. She handled it well. Hopefully it will continue to go smoothly.

You need to give Humira more time. She's only been on it a month. Unfortunately, it can take a lot longer.

If the formula is for weight gain and nutrition, then generally kids are allowed to eat as much as they want. Since she is flaring, it's probably a good idea to avoid foods that are hard to digest - high fat, high fiber (and junk food ).

If you want to try formula as a treatment (Exclusive Enteral Nutrition or EEN), which might be a good idea, since she is flaring, then she'd have to reduce her intake to 20% food or less. Some hospitals allow 20% food, 80% formula, others insist on 100% formula if it's a treatment.

That might help with her symptoms and going back to school. EEN is very effective - it actually works as well as steroids for inducing remission and works BETTER for mucosal healing.

That is something you can try while you are waiting for Humira to kick in.

Another option would be to increase her dose of steroids until Humira kicks in. Obviously that is not ideal, but it would keep things under control until the Humira begins to do all the work.

Definitely do get the 504 even if the school is accommodating, because you never know when she will get a difficult teacher. Plus for standardized testing you probably want bathroom breaks ("stop the clock testing") and you will definitely need extra absences - for doctor's appts. and for when she just isn't well enough to make it to school.

I thought that the Humira needed more time--I guess I was used to the Remicade which started working from the first dose--unfortunately we developed antibodies.

The formula is actually supposed to be 80/20 so I don't if they are using as treatment also?? I will find out Tuesday. She has been on the Pred since June so I would rather get her off it if possible. She has rested and felt better today so hopefully a bland diet will help her gut rest so the formula can work.

On the 504 do I need to get that to her teachers or does the administration normally do that? I missed back to school bash so it wouldn't hurt if I had to take it around the school so I could meet teachers & get them up to speed. Love my hubby but he is not going to talk to them like I would.

Thanks for your replies.

Admin - talk to her guidance counselor, he/she will help you. CCFA has some good info on 504 plans: http://www.crohnscolitisfoundation.org/assets/pdfs/504factsheet0816.pdf

They also have a template somewhere on the CCFA website.

Remicade does tend to work faster unfortunately. But even that can take a while - my kiddo took 3-4 infusions. Some kids on here have taken 6 full months!

Humira is slower. You do have to wait . For my daughter, who tends to respond slowly, it took 6 months. In that time, we had to up the dose from biweekly to weekly and add MTX.
But once it worked, it worked really well for her!!

I think you probably need to talk to your GI and figure out how they want the formula to be used. If it's 80/20 and meant to induce remission, then you need to be careful about calories and how much she is eating. Your nutritionist or dietician should be working with you - I think probably you just need better instructions.

They should also tell you what she can eat - some doctors make kids stick to certain foods while doing EN - generally a bland diet is a pretty safe bet. For kids who do 100% formula, there is usually a schedule of adding back food, starting with 1 or 2 foods at a time.

Hang in there!!

Yes hopefully Tuesday will be full of answers.

My daughter had malnutrition at 13 when diagnosed with Crohn's, spent a couple weeks in hospital and started Remicade. They were considering placing the feeding tube but the Dr. had her drink 3 Ensures a day along with eating and she gained all her wait back within a few months and started gaining in hospital. At home she still drank 3 Ensures a day. I wish when she was so sick before they figured out what the problem was they had told her to drink Ensure since she was able to absorb that.

I am so glad the Ensure worked for your girl. I wish mine could drink it but she just can't get past the texture. If she could've tolerated the peptamin, it would've been wonderful but it didn't work so we are going to try an amino acid based formula next. Hopefully she will be able to tolerate that.

My daughter loved the taste of cold chocolate Ensure.

coolbeans, if your daughter could not tolerate Peptamen Jr (which is semi-elemental) it is very unlikely she would've been able to tolerate the Ensure because it's even less broken down (even if she was able to make herself drink it despite the texture).

Since she needs an elemental formula, a tube is a good idea. They really taste pretty awful - my daughter made me try Neocate Jr, Neocate Splash and Elecare. She says they taste like feet and I have to agree !

The tube was much easier for her. Some kids are able to drink Neocate/Elecare, but it is tough. It's easier with younger kids - with teenagers it's much tougher.

Completely agree when Ds started he could tell tolerate kids boost
Later only peptamen jr
Right now he only tolerates neocate jr chocolate
It's tastes like rotten frozen French fries per Ds
But he has been able to drink it orally
Extremely rare
Docs were ready with a tube behind the scenes

my little penguin said:

Completely agree when Ds started he could tell tolerate kids boost
Later only peptamen jr
Right now he only tolerates neocate jr chocolate
It's tastes like rotten frozen French fries per Ds
But he has been able to drink it orally
Extremely rare
Docs were ready with a tube behind the scenes

Click to expand...

I'm smiling at this. My son says Neocate Jr all tastes fried!

We r thankful for the tube--R has a hair trigger gag that is super sensitive.

When Grace was 5 and 6 she said her EO28 Splash tasted like sweat carrots left out to long in the barn. :yfaint:

:ylol:WHAT:ylol:

Where do kids get this from. :shifty-t:

Coolbeans, did you find a formula?

And I'll take any tips for coercing bc we have hit a wall here. Even though my son knows his EN driven group of treatments are keeping him in remission, he is refusing to drink, tube, anything.

Teens.

I think I am going to try to bribe slash incent dr, therapist, teachers, coaches and anyone else to help.

My daughter had a very hard time too. She eventually relented when she got so underweight that one of her doctors told her that her organs would begin to fail. That's when she realized how serious things were and agreed to the NJ tube.

She was 18 at that time, so it had to be her decision.

For a younger teen, I'd have his doctors/therapist talk to him. I would explain that the choice is tube or drinking. He has to get it in because it is being used as medication. It really helped that our GI did not give my daughter a choice - she absolutely insisted my daughter needed formula. In our case weight was a big issue and of course my daughter was so malnourished that she felt terrible.

I can see how it would be even harder if you have a kid who feels good and is a normal weight.

You could have his doc explain to him what will happen if he stops - since this is his only treatment besides the SCD, it's likely he will flare. That would probably mean medications and either EEN or steroids. Plus, he is likely to feel pretty awful.

Maybe if you remind him what he felt like when he was first diagnosed, he will be more likely to drink his shakes.

Sending hugs - teens are TOUGH!!

Second the doc explaining formula is a medicine in his case
Not food
So he gets to chose how it goes in but not whether he takes his meds or not
We had to have that conversation last year. When Ds had to switch from peptamen jr
To neocate jr
It wasn't pretty but he decided to drink all of it orally
(Yuck) because he was determined not to have a tube

Good luck teen years are tough