Not sure what to do...

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Supermom

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Jun 4, 2012
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First I want to thank all of you that have replied to my past posts. I have and taken all info in to consideration and you all have been wonderful with suggestions.

Here is what is going on now (and sorry in advance to be so lengthy):

My son had his Remicade the other day. We met with the doc prior to discuss some symptoms i.e. hurting belly and very much hurting in the anal area. She said she had just went to an IBD conference and mentioned my son's case and I guess it was recommended for him to try elemental nutrition. She handed us a bottle of each flavor and some powder also. She said if we wanted to try and do food elimations and play around with that first we could but she did not think it would really help. She also said she could not see my son handling putting in an NG tube or me putting it in for him so thought drinking orally would be best or the button in the stomach.

So..got home and my son and I had a very long talk. I asked him if he would consider trying Boost (only) for three weeks just to see how he feels. And if we feel it is not doing anything, then do the recommended Peptite. He agreed. Yesterday, he got up, drank a Boost, took two for his lunch, had one after school and then got home for supper and he lost it. Was crying and shaking and saying it was so hard that he could not do this that he would rather be in pain. Of course I start crying (I'm a big baby and cry all the time when I even say Crohn's). So I caved in and asked if we could work out something to only have one real meal a day. He agreed. I made him two scrambled eggs, two pieces of toast and three apple slices (no peel). His stools have looked like the chocolate boost he has been drinking. He said today that it looked there may have been apple chunks floating in his stool.

You would think I would be a pro at whats going on, but trust me, I am not. I almost feel like I could still be in denial that my son is sick. I HATE IT. I cry all the time. Being a single mom and dealing with it is hard. I do have it all together and great support from friends, family and coworks but I dont know what else to do or if I am doing something wrong. The doc told me they have maxed out his meds.

Do I mess with diet now? He dont want to try going gluten. He is very very picky with food. He would eat the same thing over and over as long as he liked it. Today I had a talk with his chiropractor and he is recommending starting JuicePlus...a supplement of fruits and veggies in a capsule. Does anyone have an opinion on this? What could it hurt? My son dont eat fruits and veggies. He only likes twelve year old food.

Here is what I would like from you: Can you give me sample daily menu of what your kiddos eat for breakfast, lunch and supper? This is a big struggle for me. Should I keep trying with the Boost? What kind of snacks to keep on hand? He may be low in lactose so I put him on Lactaid milk just in case. He dont like to try new things.

If anyone will find it easier to private message me, that is fine too. I just need some help and guidance on what to do next. I have glanced through some other threads regarding diet and nutrition and I really wasnt seeing what I am really looking for.

Any suggestions and help would be greatly appreciated! I thank you all so much!
 
First, I am so sorry things are difficult right now.

Second, I don't know why the doc dismissed tube feeding so quickly. I don't think it is right that she made such a statement without even trying. I think Enteral nutrition is a great thing and worth every shot you can give it. However, our doc is a firm believer in all or nothing so even the little bit of food you gave him will not help the EN do it's thing.

Did you try various lavors of the Boost. My daughter hated some, liked others. How about Ensure? There are also many other brands you can try.

What about the EN bothered him? Did he hate the taste, was it too slushy in his belly (my daughter's early complaint), was he in pain, just the thought ofbeing without food (they do get over this one quicker than you think).

FWIW - we bribed our daughter. A mani/pedi for each week she made it through. After the first few days she was feeling so great we never actually had to pay up because feeling better was it's own reward.

Why did she recommend the EN? Is she thinking his current treament needs a little help to get his Crohns under control or are you venturing down the food allergy path?

While I understand diet alone will not control Crohns I am a firm believer in diet helping to ease symtoms and inflammation. Have you looked at the SCD or Gap diets. A lot of people here have good success with them.

Sorry I am not very helpful.
 
He did not try the Peptide the doc gave us. He does not think he will like it. He really likes the chocolate Boost. Says if he likes it he will stick to it. It was the docs suggestions because he just cant seem to shake his symptoms, with the urgency all the time to go and going six or more times a day. She did say the Boost is not as good as the prescripted drinks. He tried Ensure but dont like the taste as much.

I told him that this was going to be a hard thing to do. I bribed him with getting a dog this summer and he loved that idea. Im worried now that I said he could do one "normal" meal a day if I say no, he is going to be so mad at me!

Is starting with the Boost a good idea? And then go from there? I am going to try tonight to convince him only shakes and see what I can accoplish. I told him I dont care if he drinks ten or more a day, anytime he is hungry to go get one.
 
You really need to treat the shakes like meds.
it should be all or nothing-however to get the right amount in him you need to build up from solid food to pure liquid.
So day one 4 shakes with whatever he is willing to eat.
day 2 6 shakes etc.... until he is getting enough calories ( more for a full growing 12 year old) Ds took 7 shakes a day at age 7 for comparison .

As far a "like" the shakes well- I would have him try the elecare first (which should be the powder you got) then the peptamen jr. trust me he will take the peptamen and given he is "maxed out" on meds you want the most bang for your buck.

You can't convince him it has to be - you chose drink it or a tube matter of fact - not a punishment just what is.
If it takes two hours to drink 8 oz then it takes two hours you need to sit beside him.
be consistent.
my son cried at every drink or sip for a while I plugged his nose while he sipped through a straw ( which is key for them to drink an elemental).
If he can drink after a week of you chanting and trying every day for a few hours each day then ng tube.

I know this sounds cruel but I can say
JMrogers used this method and her child is doing very well on EN. He would not touch it before (gaged and vomited at the sight of the formula)
I used it with Ds and two years later he can still chug a shake ( peptamen jr) in under 5 minutes if needed)

He will tell you it tastes horrid.
We also bribed heavily during his EEN phase ( cash every week from us and his relatives)
it really helped.

good luck
 
I will give you the reason my son's GI gave us for going with the peptide as opposed to Boost. The proteins and things are further broken down allowing them to absorb it more easily.

Prior to going the Peptide route we tried Ensure, it made his stomach hurt and he wasn't fond of the taste, we tried Boost, it was okay couldn't get him to drink enough (8) a day and doctor said about the absorbtion, said he really needed to be on elemental.
It wasn't fun, you can read about him taking small tiny sips then large sips of water, gagging and taking about 2 hours to finish 1. Told him this was like his other medicine and it wasn't an option it was either drink it or we were going the tube route.

It wasn't easy the first 2 weeks were the worst (especially when I found out he wasn't drinking them at school - no wonder why he still wasn't gaining much) I spent an hour crying in the counselors office. What the counselor said to me was that at the age (Jack is 13) they are they don't see the "big" picture only the here and now and how it affects them at that moment not that this will make me feel better if I do it for 6-8 weeks.

After the first 2 weeks and he started feeling well, gaining lots of weight and had energy and had gotten used to the taste of the Peptide (which did not hurt his stomach), he finally made the correlation that they were helping and couldn't wait to go back to his GI to show him "his belly". He would wake up not feeling tired and had the energy to play sports and do stuff with his friends. He even grew an inch in the 6 weeks.
We finished our 8 weeks on the 9th of this month and he only drinks 2-3 a day now and eats normally.
 
Very cold AND straws are key! Also, if you can keep them in a container where they can't smell them even better.

JM reminds me...we didn't present O with 8 weeks at first. We took it day by day. First day, see if you can drink 1 shake. Our intention was to add a shake a day like sort of like MLP said butour daughter is an all or nothing gal. After that we said see if you can do one day, then see if you can do 1 week. Our thought was that presented with this is 8 weeks it could be overwhelming. You can do anything for one day! Then small success fuels larger success.

JMR: Holy guacomole! Your boy does have cheeks! I can't believe it is the same kid! How awesome is he?!
 
My son did six weeks of exclusive EN thru NG tube. He inserted it bfr bed (took only seconds), formula was pumped in overnight (was not a drinkable formula) and removed it every mornings (even easier than inserting). He was given no choice! Not by us but by his GI - it was presented as his treatment. PERIOD. (Steroids were only vaguely mentioned.) As we knew nothing abt Crohns, neither of us questioned it.

He was, however, allowed clear fluids and things made basically from clear fluids. This was definitely a big help. He was allowed:

Clear broth (chicken, beef, veggie, etc)
Jello
Clear freezies or popsicles (ie no choco or caramel type flavours)
Gummy candies
Clear hard candies like lifesavers (again no choc, caramel)
Clear juice (no fibre), gatorade, ginger ale (no coke, pepsi, etc)

This allwed him to take broth for lunch to eat with friends and I arranged to have freezies kept for him in the teachers kitchen. He would also hv broth at dinner. I tried to give a bit of flavour variety by simmering the broth with spices (rosemary, basil, etc) and then straining.

While he knew it was 6 weeks, I did similar to crohnsinct as I didn't tell him the final date - I thot it might seem overwhelming to count down.

Distraction was key!!!!! I won't say it was easy and he did have some moments when he thought he cudnt do it but he did.

It very quickly took him into clinical remission. After the six weeks, he gradually added back a regular diet and kept the formula at 1/2 dose, 5 nights per week. He gained weight and felt really good. For 18 months, this was his only treatment. Unfortunately, MREs showed some continued inflammation so we have had to start remicade. But it is definitely a treatment worth trying!!! :ghug:
 
Also, while candies, gummies, juice, pop, etc are allowed, this is in MODERATION! You need to be careful of too much sugar. :(
 
I'm so sorry you have having such a hard time..here is my story. My son just turned 9 and his inflammation is pretty bad and he's just not growing. So, before going to Remicade or Humira, I asked to try EN. Interestingly, docs here will not allow EEN!! They feel EN at night through a feeding tube and eating whatever he wants during the day allows for the best compliance. They feel here at Children's Colorado that the purpose of EN is NOT to rest the gut, but to have the formula "change the environment" of the gut, allowing for healing of inflammation. So, my son is going on 2 weeks tomorrow. He puts the tube in himself every night, I aspirate and test the pH to make sure it's in the right place, I hook him up to the pump/formula and he gets formula fed for 10 hours. I am stair-stepping him up to the amount the doc wants him to get (1500 cal/night)..and he's doing incredibly well... No idea yet if it's working but we have not had any problems with it, and my son has been feeling great, with the exception of a stomach ache today, which can be anything. No data to report yet, but I am a fan of EN.
 
Hey Supermom...

I just wanted to wish you well and pray you come up with the best solution for you and your son... sorry you're going through all of this... We have not done the EN yet, my son was on Boost for a while to help him with weight gain, but we haven't been on any of the other products. To answer your one question (again for a child that is NOT on EN or a liquid diet) from onset when he started eating again he did lots of bland foods (mashed potatoes, with gravy, white rice and pasta).
 
I just want to add that it would be a good idea to check all these drinks like Boost and Ensure, to see if they have the ingredient Carrageenan in it. It's really bad for IBD. Please just research all the brands of foods you buy for this ingredient. There are always good alternatives you can buy. Just google for lists of foods with and without carrageenan. Boost and Ensure are full of sugar so the elemental drinks are much better, but not so easy to feed Children. Perhaps a button would be a good idea for night feeds if the tube is not an option, and then eat normally during the day. It's better than nothing, and as long as you get majority calories from elemental feeds, it would be beneficial. If your son cannot tolerate the NG tube, there are other ways to do the elemental diet such as the feeding button and not all tubes have to be removed every day. Some can stay in for weeks.

With regards to ideas for meals and snacks, perhaps it would be a good idea to google some recipes from the SCD diet?? I have never used the diet, but have heard good reports, so I tried some of their recipes, (like their banana pancakes, and the egg muffins) and they were very good. Even with the SCD diet though you have to eliminate what is bad for you on an individual basis. For me, the tomatoes and nuts would be a problem, so just stay away from it. Also, the Almond Milk has carrageenan in it, so find an alternative almond milk without it.

Here is a list of alternative products:

http://www.cornucopia.org/shopping-guide-to-avoiding-organic-foods-with-carrageenan/

Here is an easy recipe you can put in the crock pot in the morning before work, and it makes the most tender chicken:


http://www.100daysofrealfood.com/2011/02/25/recipe-the-best-whole-chicken-in-a-crock-pot/
 
I cannot thank you all enough for your feedback! Each of you bring something new to the table for us. I have printed out everyone's response and I am going to sit down with my son and let him read what other kiddos are going through.

One question I forgot to ask...He is currently tapering off Prednisone right now (has another four weeks to go). Is it wrong to start any of the nutritional shake challenge while on steroids or is it better to wait? Right now he is drinking abuot five Boost a day and I am letting him have a sensible meal for supper right now just to get him used to only having shakes but my mind may be changing and I may not let him have real food. I am kinda concerned about his stools a little. The past few days, since he started drinking the Boost, his stools look kinda thick like the shake mix itself and very very loose. I have a call into the nurse to fax me a script to go get a stool sample tested.
 
As far as I know, there shouldn't be any issue with pred tapering and EN. However, my son has never used pred, so my knowledge is only from what I've read here...

Re the stools... when my son was on exclusive EN, all his BMs were diarrhea-ish. Although it doesn't see to be a very common occurrence amoungst the kids here, our dietitien had warned us this might happen, ie liquid in, liquid out. It might be the same for your son???
 
I don't think there is ever a bad time to do EN.. my son is going EN through NG tube (there is NO WAY he would drink the shakes.. he's a terrible eater and it would take a day to get him to drink one, let alone 5-6!). He does the tube every night, eats whatever he wants during the day. I do know that he had lots of diarrhea the first few days of doing the formula feeds, but those went away after a few days and he had normal stools now. I cannot see how starting while on pred could hurt at all.
 
Yes, we had loose stools as well. There have been a few who have done EN and Pred at the same time but only one I can think off the top of my head is farmwife. I don't know if she'll but her two cents in or not - It is a busy time on the farm.
 
There is no reason why he can't start the shakes whilst tapering Pred. :)

Good luck!

Dusty. xxx
 
Sorry, no experience with EN other than urging my son to drink Boost for extra calories and protein. I will chime in about your son's experience with raw apples as that is exactly what happened the last time my boy ate raw apple! He hasn't touched an apple in 3 years!

I don't really like your GI's comment about meds being "maxed out"! It doesn't leave much hope and I guarantee there are meds or combos of meds that haven't been tried! Maybe your GI would rather get him in remission without more meds and who wouldn't, but to say there are no other med options is just irresponsible!
 
Sorry I am a bit late to this thread.

When my son was diagnosed we were given the choice between EEN and prednisone. We chose prednisone because we couldn't, at the time, wrap our heads around EEN. When prednisone didn't really do the trick we switched to EEN. We made the switch to EEN when he was still tapering the prednisone so he did EEN while still on pred. At the higher doses of pred my son had a hugely increased appetite (aka pred munchies) which made sticking to EEN harder I think.

My son did the EEN via an nightly NG tube and was allowed clear fluids, basically the same protocol that Tesscorm described. My son found the first week the hardest in terms of dealing with not eating. In fact I think the second day was the worst as that was when it really sunk in that he wasn't going to eat ANYTHING. There were tears and it was heartbreaking (I can tear up just thinking about it). But he pushed through it and it became easier as the time went on. It was almost as if the habit of eating meals had been broken after about 1 week, it was still tough but desperate urge to eat that meal was definitely lessened.

We used lots of distractions such as video games or tv at dinner time, which was previously unheard of around here. We used bribery. My son wanted a fish tank so we told him if he did the 6 weeks of EEN he would get one but he had to do all the research himself, which was another source of distraction. Wouldn't you know that the fish he chose were piranhas. :ybatty:

My son was under the impression that if he ate anything he would have to start EEN all over again. I conveniently let him continue to believe this. My son liked the count down approach. We started out thinking that he would do it for 6 weeks and marked an end date on the calendar and did a count down and crossed each day off with a big red marker.

:hang:
 
Jmrogers4 said:
Yes, we had loose stools as well. There have been a few who have done EN and Pred at the same time but only one I can think off the top of my head is farmwife. I don't know if she'll but her two cents in or not - It is a busy time on the farm.
Click to expand...

:ghug:

Sorry late to this post.

First high and welcome.
What I've read in all the replies is right on.
We opted for EEN FIRST because of our hopes of bring her into remission with out the use of meds. That didn't work out for us and she grew worse and had to do a course of pred. It did calm things down. She is still on EEN and will be for some time. That's because of other health problems.
I hope all works out soon. HUGS
 
My son did 8 weeks 8 shakes of Fortisip a day and drank every damn one of them. It didn't work well enough but he didn't want a tube and we paid him for each one!
 

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