"formula" diets-any experiences/advice?

[erinbeck]

Id like to go into my sons whole story, but as all of you every story is long and detailed. I am a gather of information trying to make sense of this and trying to be prepeared as a mother of a Chronie and of course the protector of all-lol.
DS, 14YO, has a resection Feb 23, 2018. He had a GREAT 6 weeks after!! the best six weeks of the last 52. That came to a shockingly quick holt as he developed a fistula(everything happens on the weekends am i right?) and I brought him to the ER. Dx a skin infection, take these antibiotics and see your Dr. next week. The following day, Sunday, the skin infection was clearly growing an strtching skin and developed a black spot in the middle. Again back to the ER, while we waited to get tranfered to our Childrens hospital the (unknown) fistula burst like a huge zit.
The fistula, through 9 days in the hospital a PICC line, disturbed sleep every 4 hours, missing school (again), is being drained with a Seton drain. This in hopes the "hole" he sprung closes and heals. To keep his instestines from working and not healing/closing, Ds is on a "formula" diet for 4-6 weeks. It has been 1 week. I have called the RD nutritionist yesterday(again a saturday) with a few quesitons and I know I wont hear bakc till sometime tomorrow at the earliest.
This diet is Boost Plus or Ensure 6-7 /day and water.

I am looking for answers and wating days in not my thing. It seems all we do is wait. Anyway, Can baby food like bananas stage 1 be added to his drinks? Can I take real food and put it in a processor till it is liquid?
As he is still "eliminating" there is still activity going on inside, so whats the harm in adding some flavor? Or now that I think about it, flavored oils or extract oils?

He also does not like water, as I, so adding the flavor drops could cause harm? if so, how?

Why can't he have Gatorade?

 

[Maya142]

So generally it is only formula to give the kiddo's intestines a chance to heal. Studies show EEN (Exclusive Enteral Nutrition - or formula only) works better than steroids for healing.

Your poor son, he has been through a LOT!

Normally GIs have their own rules about what is allowed during EEN. Some let kids chew gum. Others allow things like broth. Some will allow sugar, so you can make cotton candy as a treat. Some don't allow any of that - nothing at all other than formula and water.

I'm going to tag some parents whose kids have done EEN and they will tell you what their kiddo has been allowed.

One question though - how is he tolerating the Boost/Ensure? Is he getting nauseous/having diarrhea or belly pain? I ask because Boost and Ensure are made of whole proteins, so some kids have trouble tolerating them and need more broken down formulas. My daughter did. She also used an NG tube instead of drinking the formula, which is an option if your son is having trouble drinking it.

There are semi-elemental formulas like Peptamen Jr. and Pediasure Peptide which are more broken down and easier to absorb. And then there are elemental formulas that are broken down into amino acids and easiest to absorb.

Ensure and Boost are the most palatable, so if he is able to tolerate those, then I'd stick with them.

Generally, things like pureed food are not allowed during EEN. I am not sure about adding flavoring to water or gatorade so I'm going to tag other parents.

my little penguin
crohnsinct
pdx
Tesscorm
Clash
Farmwife

 

[erinbeck]

Thanks so much! His Dr said gum was okay and is a savior!

Boost Plus is what is he drinking the chocolate flavor. I do one with him before school for support. It is not bad. I like the ENLIVE by Abbott, not sure if it is new to the market but it is better tasting to me.

As for the GIs, shouldnt it be standard? sorry not instigating but that is frustrating.

Thank you so much for the tags. I serioulsy need the support!

Also, since they might be reading these, he(parent zone) needs some support although he will accept nothing. He is so so so stubborn. His teachers have been nice with his last hospital stay-he has missed so much school as a Freshman, being ousted by kids/teammates that type of thing leading to isolation, IMO.

 

[Maya142]

Seeing a psychologist can really help. You can ask your GI for one - usually they have one they send kids with chronic illnesses to. Some GI departments have psychologists on staff. He is dealing with a lot and it can make a world of difference.

My daughter was diagnosed at 16 and her GI insisted she had to see a psychologist. My daughter REALLY fought it and was not happy about it, but eventually went. It took a while, but she got used to seeing her psychologist and it really helped her learn how to cope with the disease. This is a life-long disease and everyone needs help sometimes. Now she says seeing a psychologist was the best thing her GI made her do and she reminds me to make appointments.

Enteral Nutrition is gaining popularity in the US. In Europe it is a first line treatment to induce remission, so I would imagine it is more standard there.

crohnsinct will know more about standards - I am sure there are recommendations, but not all practices follow them or they each have their own rules. For example, at our children's hospital, most kids are allowed to do 80% formula and 20% food for inducing remission. At other hospitals, it is 100% formula.

However, for gut rest, it is always 100% formula I believe.

There are many kinds of Boost shakes - there are different flavors and I believe Ensure has some juice type shakes too. Check the websites and then check with your GI to make sure he can have them. Generally different flavors are allowed, so that would give your son a little bit of variety.

These are the juice shakes: https://abbottnutrition.com/ensure-clear-therapeutic-nutrition

I would definitely check with your GI and see what is allowed.

 

[my little penguin]

In a short answer
No solid foods period
This includes blenderized foods
Nothing nada
Except the formula and water
Gum can be used sparingly

It’s seems mean but it does work at healing the gut
Food of any other sort is not allowed
Period
My kiddo is also 14
And has done formula only three times
He does drink 50% formula and the rest food the rest of the time to maintain growth
Normal for his age for height and weight

Ds was dx at age 7 so he doesn’t know anything different

 

[Farmwife]

My Grace was 3 at dx, so way younger than yours.
Her GI didn't even mention EEN.
Thanks to this forum I brought it up.
He said most can't comply with EEN and steroids are easier.
Since this time it seems like they are really pushing it.
Which is great to have another option.

Now Grace was put on EO28 SPLASH formula.
This is the most broken down formula. Easiest to digest.
Unfortunately it still didn't simmer things down and steroids were added.

Now we're 5 years in :yfaint: and she's been switched to boost.
It's worked until lately but it's still not as easy to digest.

I cant give advice on how to make a teen comply because mine is only 9 and she'll always listen to me. ........leave me in my happy bubble:sheep:

 

[pdx]

I agree with the above--that you shouldn't add any other types of foods until you talk to your son's doctor.

My daughter did EEN for 8 weeks, and she was allowed to have 10% of her calories from food, but she wasn't on gut rest; we were just using EEN as an alternative to steroids, and to increase her nutrition intake. I know that it seems strange that different doctors have different EEN regimens, but EEN has not been widely studied, so there are not yet definitive answers on what works best.

I'm so sorry that your son has been through so much this year. Have you heard of Camp Oasis? It's a week-long summer camp for kids with IBD that takes place in different locations are the US. My daughter went for two summers, and it was a great experience for her. She loved meeting other teens (and counselors) with IBD, and she left feeling supported and understood. She also gained a lot of knowledge of IBD and its treatment and was more accepting of her treatment afterwards.

 

[Tesscorm]

My son was 16 when he was diagnosed and EEN was his treatment. He did EEN for six weeks, using an NG tube. His formula was Tolorex, elemental... NG because it was horrible tasting. He would insert the tube each night, ingest the formula overnight and remove tube in the morning. It was a lot easier than it sounds. But, definitely something that can seem 'scary' at first.

He was allowed gum, clear candies (ie lifesavers, gummy worms, etc. but no caramel), jello, clear popsicles/freezies (ie no chocolate), clear pop (ginger ale, 7-up) or drinks (ie koolaid, etc. was ok but absolutely no fibre in any juices - so I was very careful in buying apple juice, etc.) - I don't remember specifically but maybe gatorade was allowed. He was also allowed broth which was a lifesaver!

Breakfast wasn't a problem because he was full from ingesting the formula overnight. For lunch, at school, I sent him broth in a thermos so he could sit with friends and have 'lunch' and I arranged for the school to keep freezies on hand for him. Dinner was broth again. Yes, boring but, at least, it was a 'savoury' flavour - he didn't like jello and quickly got tired of just eating freezies (plus, it's a lot of sugar when all he could eat were 'sweets'). I mixed up the broth flavours as much as I cud - chicken, beef, veggie, etc. I bought the broth because, as much as I tried to strain homemade broth, it never seemed to be as clear as the bought broth. To add a bit of variety, I would heat up the broth with spices (beef w rosemary, chicken with basil, oregano, etc.) and then strain.

As was said above, there are different goals with enteral nutrition... 'exclusive' (formula only) diet is generally to allow for bowel rest and induce remission. With this goal in mind, the 'cleaner' the diet (in this case, by cleaner, I mean proteins most broken down, no food added), the better.

EN (enteral nutrition but not 'exclusive') can be used to assist in maintaining remission (along with meds), in this case, food is added and the formula is more a 'supplement'. In some cases, very little food is added (ie 10-20% food, 80-90% formula) and, in some case, there is more food/less formula. I guess it's a matter of how much bowel rest is still preferred, how solid the remission, etc.

In my son's case, once he finished the exclusive six weeks, we were told he could gradually add back all foods (some restrictions with seeds, nuts, etc.) but he was to maintain the overnight formula feeds at 1/2 the 'exclusive' dosage, 5 nights/week. So he was taking in 1500 calories each night, plus whatever he wanted to eat during the day. His ped GI and nutritionist told us they didn't really know 'why' keeping the formula could add success to remission but there was no harm in trying. My son continued with this until he left for university.

But, as scary as the NG tube sounds initially, this is what allowed him to keep with the regimen for so long... other than a minute in the evening to insert the tube and even less time in the morning to remove, it didn't affect him during the day (no need to fit in a certain number of shakes, etc. And, because it was only 5 nights/wk, no impact on weekends.

Supplemental EN also allows us (the parents ) some peace of mind when kids are picky eaters or lose their appetites, etc. Regardless of what he would or wouldn't eat during the day, I knew he was getting decent nutrition from about half his food/calorie intake.

Sorry, I think I jumped around a bit in my comments but I hope some was useful.

:ghug: