EN question about hunger

[EthanClark]

Hello All,
We just started our 3 yr old son Clark on EN DEC 23rd to try and induce remission with his Crohn's disease. I am wondering for those who have had their children on EN if their children were constantly hungry. His dose is 1000ml a night. We leave the tube in throughout the day as the insertion for such a little one was quite rough. Especially because he ended up vomitting the first night after we were sent home from the hospital and we had to re insert the tube a second time. He is allowed clear liquids so he is wanting chicken broth and jello quite frequently. I am hoping as we just reached his maximum dose last night that his hunger pains will decrease some. Your advice is greatly appreciated.

 

[Tesscorm]

My son is much, much older than Clark (Stephen was just shy of 17 when he did exclusive EN) so, I'll share what I can but it will be a bit different for you with such a young child...

Stephen also had the formula overnight... he wasn't hungry in the morning as he would have just completed the formula feeding. At lunch, he took broth to school and he also had 2,3,4?? freezies (he was also allowed freezies, popsicles - no chocolate!). He felt the most hunger by dinner time... again, he would have broth.

Check with your son's GI but there shouldn't be any problem splitting up the full amount of the formula over a couple of feedings - ie some during an afternoon nap or quiet time?? and the balance overnight - just to help lessen the daytime hunger.

A couple of times, Stephen did have some of the formula after school (the amount he had after school was taken away from the overnight feeding) - I think this helped alleviate some of the hunger over the evening. Distraction, however, was the biggest help in evening.

To add some 'variety', I flavoured the broth... so would warm up the broth with different spices (rosemary, basil, etc.) and then strain before giving it to him. If your son's GI doesn't allow freezies/popsicles, you can freeze jello in popsicle molds. My son doesn't like jello (too sweet for him) but does like juice (he was allowed NO FIBRE, clear juices) so I made 'jello' with plain gelatin and juice (still wasn't a big hit for him but, at least, a bit of variety )

I also found changing up the 'container' of the broth added a bit of variety - sometimes a bowl, sometimes a mug... It's so hard to go six weeks with such a restricted diet, even something as simple as a bowl or mug seemed to help (albeit slightly!)

Twiggy930 and my little penguin had some ideas (not sure which) - slushies and cotton candy...

One thing, be careful with all the sugar...

Our dietitien also told us that as healing progressed, hunger would increase. She also warned us that the 3rd and 4th week would be the hardest to get through and this was very much the case with Stephen...

Good luck!

 

[EthanClark]

Tesscorm-Thank you very much for the advice. We will try splitting the amount during the day if his hunger keeps up. I believe Clark is the first IBD patient in our GI clinic that is trying exclusive EN for treatment so I appreciate the help as the GI docs haven't been through this before. They are quite amazing doctors but not many parents in Utah are willing to do the EN route so they are anxiuosly waiting to see how this helps to be able to offer another route of treatment. Crossing our fingers that this will be what he needs to start healing and gain some weight.

 

[Tesscorm]

Great to hear that Clark's GI was willing to try EN - while it seems to be common around the world, it seems to be uncommon in the U.S.???

Here is a link to the Kids on EN thread - you might find some other ideas in here...

http://www.crohnsforum.com/showthread.php?t=36345


I hope you find success with EN!! My son did very well with it and has continued to use it at half dose as a maintenance treatment (we will be adding some meds soon but it has kept him 'stable' for the past 1.5 years).

Good luck!

 

[my little penguin]

Hugs

We did en with DS . No tube he just drank everything orally ( peptamen jr)
So hunger was not an issue .
He had formula for breakfast lunch and dinner then a snack before bed.
You can set it up for a continuous 24 hour a day feed - ask they Gi
They should be able to tell you since this is done for kids with EoE.
The rate would be slower but it could work
Also for mobility reason did they give you a backpack he can wear the pump in so not to be stuck to one place . Even setting up feeds like you would if he was eating should work.
Breakfast snack lunch snack dinner snack since most three year olds eat more often .
We also did shaved ice for maintaining oral skills.
Here is a link to other little little kids who have tubes ( ng or g tubes)
Due to food allergies lots of good Tubey info

http://community.kidswithfoodallergies.org/displayForum/forum/elemental_diet

Tubey 101 etc...

DS was allowed pure sugar / dumdums and water but not anything else .
We made homemade pure sugar cotton candy and pure sugar " cookies".

 

[EthanClark]

My Little Penguin-Yes they did give him a back pack. We haven't used it yet as his feeds have been at night but will give it a try if we need to spread them out during the day. The poor little guy doesn't do much moving around as it is though. Not much energy. We are hoping that will improve once he starts getting more nutrition from the formula. He is anemic and has had very low zinc for quite a while so things should improve with feedings. I would give anything to have my rambunctious little boy back. We are lucky most days if we can get a smile or laugh out of him.

 

[my little penguin]

Also ask about upping his feeds if he is hungry.
Our Gi permitted DS to add a shake or two if needed .
He was on 1750 calories a day.
Depending o. His level of disease it may or may not put him in remission .
EEN did not put my son in remission but it did help with nutrition and weight gain .
We still have him drink 2-3 cans/ shakes a day (750 calories) as part if his maintence in addition to remicade. He will continue on it until he is finished growing.

 

[EthanClark]

Thank you. I do like knowing that he is getting the nutrition he needs and will also continue with the formula so he can grow normally.

 

[my little penguin]

Just so you know there is hope .
It took us over a year but you would not know my child is sick anymore .
He gained all the weight back grew and is happy playing causing trouble.
It just takes time to figure out which treatment works best for your kiddo since there is no right or wrong way just what gets them to remission.
Only settle when the kid is back to normal you can get there
Good luck and take it one day at a time.

 

[crohnsinct]

I think it is awesome that you are doing EN to help your boy. What a brave mama and courageous boy. My daughter did EN but drank her shakes so it was easy to just have more or less depending on how she felt. She was only allowed water with thte EN. As long as he is getting the right amount of calories etc (check with doc about raising the intake) they really aren't hungry. At the beginning for our daughter it was more the thought of not eating that made her feel hungry. But when she learned that the shakes were really filling her she calmed down about the hunger aspect. She missed chewing so our doc approved one piece of gum a day. Distraction was key for us as well.

Oh! And often people think they are hungry when in reality they are dehydrated. Try having him drink some water when he says he is hungry. Adequate water intake was also key for our daughter.

FWIW - EN worked very well for us. Hoping it does the same for you!

 

[Twiggy930]

So glad to hear you and your son are giving EN a try. My son found that he wasn't hungry but he felt like eating, especially at typical mealtimes. We distracted him at these times which helped. After about 1-2 weeks it was almost as if the habit of eating had been broken and it got easier.

We were told that there was no particular upper limit of how much formula he could consume. The amount they prescribed was a minimum that had to be consumed daily but if he wanted more that was fine. Occasionally he would drink an extra shake or two during the day. I think the only problem with consuming more formula then prescribed is weight gain which isn't generally a problem with these kids.

Hope your son begins to feel better soon.

 

[Sascot]

THat's great that you are trying the EN.
Don't know if it's an option for you, but my son never had a night time pump. We "fed him" at regular mealtimes - breakfast, lunch, mid afternoon, dinner and just before bed. That meant when he was hungry, he had the EN as a "meal" so it filled him up. We never used a pump - I used the gravity bolus and allowed it to flow in slowly. I did get a very strong arm holding it up above his head

 

[EthanClark]

Thank you all for the words of support. Especially after a night with little sleep. Between my 5 month old baby and Clark's illness, sleep is pretty much a thing of the past. LOL. He really is the sweetest boy ever. He keeps telling me that he loves his new milk drink and thanks me each time I flush his tube. :rosette1: Sweetest little angel ever. It truly breaks my heart to see him go through this. This forum has been a great place to come and talk with other parents that understand what you are going through as others with healthy kids really cannot grasp how terribly hard this really is. Thank you!!!

 

[upsetmom]

Your right mum your little boy is an angel....:sun:
our kids go through so much yet they're always smiling.

I know it might be easier said than done but try and get some rest.

Take care..:hug:.