Nutritional shakes...advice needed

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Supermom

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So my son, who will turn thirteen next week, has been put on nutritional shakes for a period of time. I know many of you swear by this treatment and so we talked to the GI and she recommended Peptite for six weeks. She gave my son a sample to try and he did not mind the taste. He did not want to do any feeding tube. Doc put in a prescripion and low and behold, the insurance denied it. She wrote a letter to the insurance company, I applied through Abbott Labs for free products (but of course made too much money) and the cost for the shakes was well over $1000 for a month.

After a couple days of conteplating what to do (because I am a single mother and that kind of money is not in my budget) the doctor called me and said she had recently read an article on over the counter nutritional shakes and to pick one and get started. And even though they are not fully elemetal, if he could get any Peptide in him, that would be better. So I did some research and decided on Boost Kids Essentials 1.0. Its not over the counter but not the most expensive either and can be used with a feeding tube if that route was chosen. So I ordered five cases of the Boost and one case of Peptide. Doc wanted him to take four Boost and two Peptide a day.

This is hard for anyone to do I am sure. My son and I had long talks about this process and it was not going to be easy but he agreed to try. He really likes the chocolate Boost so I was thankful he would do it orally.

He had just finished tapering off Prednisone two days before he started the shakes. I put him on the scale and he weighed 124. Exactly two weeks of being on the shakes he weighed again at 118. I called the doc and she was not too concerned thinking that he had just got off steroids and to increase the Boost to six a day instead of four.

My son is starving!! We had went to some family functions and he did pretty good but I caught him sneaking a couple chips. She said he could suck on hard candy, which I have given him. She said he could have a popsicle here and there. But he is starting to become defiant and not wanting to drink the shakes anymore.

I work full time so I am not home to keep an eye on him (I have his sister spying for me) but he has texted me several times today saying he is tired of the shakes and he cant and wont do it anymore and he is going to die. He is asking me why I am in control of his body and not him. I try so hard to be supporting and telling him he can do this and to think of the end result.

The bad thing of all of this is has has CDiff. And he is on his second round of antibiotics but I am pretty sure I still "smell" it. He does not go to the bathroom near as often-maybe about five a day-as he was but how would I tell if his bowels are resting with drinking the shakes if the CDiff is causing him to go the bathroom and be in pain. He said his only pain is when he is straining, which has lead to rectal prolapse (he gets no break,ever it seems).

Any advice on what I should do? I told him if he made it to four weeks I would talk to the doc. She wants him to do six but there is no way my son will and I dont want the doc to get upset and not take him as a patient anymore. She says she is doing all she can, this was a last resort.

Would you go against her with the no food thing and maybe half days of shakes and one meal? Talk to a dietician? He is refusing and I cant pour into his mouth and I dont want him losing more weight.

Any advice would be much appreciated!
Thanks!
 
When my son did it, he was warned that the 3rd and 4th week would be the hardest and, they really did seem to be. :(

But, he was also allowed clear broth (chicken, beef or veggie). This helped as it was a different flavour, was hot and was more like a 'meal'. I would also heat up the broth with different spices (rosemary, basil, etc.) to just give a bit of variety (make sure you strain it though).

He was also allowed freezies/popsicles, jello, gatorade, 7-up, ginger-ale, etc. (But, you do have to watch the amount of sugar.) But, he would take some broth for lunch to eat lunch with friends and I arranged for the school to keep freezies in their freezer for him. He would have the same for dinner. My son had his formula overnight through tube, so the broth and freezies were the only things he had during the day.

Distraction also helped alot - especially in the evening when he would begin to feel the hunger.

My son was 16, almost 17, but, just as a reference, he was getting 3000 cal per day from the formula.

I know if you freeze the shakes to make popsicles, they lose some of their nutritional value but perhaps you can blend them with ice to make them a bit frothy like a smoothie?? Just a bit of variety??

It's not easy for them though... I really admire these kids who do this! I'm not sure I'd be able to do it! :ghug: :ghug:
 
My now 9 year old was on 1750 calories a day at age 7.
That is 7 shakes a day.
Six shakes really is not enough calories .
As far as coverage
Does your insurance cover durable medical equipment?
Most will not cover a prescription of formula but will cover part through the durable medical equipment clause.
Oley foundation also helps with formula cost
Boost kids can be bought in most grocery stores for alot less when its on clearance .

Amazon super buying has discounts
As does auto order for abbott
You can get discount from nestle for kids boost they are always on sale.

My son was drinking eight a day at one point .
He still drinks three peptamen jr a day which thankfully is covered by insurance .

Good luck
 
Hi there. So sorry this is proving difficult for him. My daughter did about 8 weeks EEN with Boost and Ensure and it worked. Right around the same time of year also. Bar Mitzvahs, Graduation parties, weddings, end of the school year celebrations...stinks that they have to go through this and I give him a lot of credit for trying.

My daughter was on 8 to 10 shakes a day. After the first few days she wasn't hungry anymore. He probably needs more shakes. Our doc said to try every 2-3 hours. With the c diff no wonder the poor thing is hungry. He probably wasn't absorbing anything.

Our doc is a proponent of exclusive nothing but shakes and water but in the end he said there was some evidence that a bit of food may be o.k. In weeks 7 and 8 he let my daughter have pasta with a tablespoon of sauce and 3 ounces of boiled chicken.

You say this is a last resort. What other meds have you tried?

One thing that helped my daughter was that we never discussed the full 8 weeks. It was just try one shake, then try for today. Also bribes. She got a mani/pedi each week she was successful.

Good luck! Keep us posted!
 
Have to agree with MLP my son was drinking 8 a day and allowed food he is also 13, just doesn't seem to be enough calories for a boy that age, according to his GI at 8 drinks a day we did not need to be concerned whether or not he ate anything else. I can imagine he is hungry. I think an increase in shakes would help the hunger, Jack was drinking one about every 2 hours

We used Peptide for 8 weeks and are now drinking 2 of the Boost kids a day to maintain weight. It took a while and a lot of phone calls, insurance denied it a first but the Durable Medical supply company called with their codes, the doctors office called and I called. When I told them Jack was getting over 90% of his calories from it they agreed and paid at 80% which ended up costing us about $78/case. Insurance company required a prescription and it had to go through a DME.

Not saying it was easy especially in the beginning - Jack did NOT like the taste! but I think now that it is over he is glad that he did it, he feels great and he did not have me nagging him about eating for 8 weeks.

Hang in there
 
Have any of you heard about carrageenan as an ingredient in Ensure and Boost? From what I just found out, it is destructive to the digestive system as it causes inflammation. Its in a lot of dairy products, including some almond milks, coconut milks, and cows milk. check it out. Look up Dr. Joanne Tobacman who has researched this extensively in Chicago. She says this ingredient activates an immune response that triggers inflammation. Prevention.com has a big article on it. Also see cornucopia.org which has a list of specific foods and brand name products with it, including nutritional drinks. I believe there is a petition to prevent its use in food products because of its negative qualities. There are some nutritional drinks, like Svelte, that don't have it. Also a mail order product called Absorb Plus doesn't have it. Just wanted to share what I just learned.
 
My son understood the only other option was strong drugs, which was all the motivation he needed to drink his 8 Peptamen everyday. To my knowledge he never cheated and even turned down an offer of flavored straws, to stay as pure as possible.

He was/is 16, though.

Does your son know and fully understand the other option(s)? And the possible consequences?
 
I had posted this on an adult EN forum but DustyKat kindly pointed me in this direction, I thank her for helping me find it! The info I've read so far is wonderful, and very informative.

My son was dx w/crohn's about two months ago after undergoing an misdiagnosed emergency appendectomy. They discovered that it was crohn's and we have been swimming in unfamiliar waters since then. I've read as much info as I could get my hands on and horded even more to read later. My 15yr old is on Remicade and the GI recommended Boost(which is clearly not enough).
If any suggestions are available it would be greatly appreciated:

"Hi All,
I too am curious which one's would be best suited to oral supplementation as opposed to the naso-gastro tube.
My son is newly dx crohn's, mostly small bowel. Experiencing malabsorption, malnutrition, and on Remicade. I mentioned the supplemental EN to his GI but he brushed it off saying it wouldn't be palatable enough and wouldn't be effective. I want to try it to help him get back on his feet. A little nutritional boost couldn't hurt. all the GI would suggest was over the counter Boost or Pediasure. I suspect these are not adequately absorbed.
I won't accept the GI's conclusion before even giving EN a try, but finding the right one would make the attempt more successful...

Thanks "
 
Welcome lilikoi
If there is a problem with absorbtion one of the elemental formulas would probably be best, even though he is 15 I would still go with one of the "jr" formulas like Pepatem Jr. In my own opinion small bowel seems to need a little extra in order to absorb calories and nutrition. The proteins in the elemental formula are further broken down making it easier to absorb as opposed to Boost/Ensure. They are pricey though.
There are adult formulas Pepatem but I'm not sure how palatable they are, even the "Jr" ones are not the best and it was quite the ordeal to get my son to drink them but we fought through it and he gained 23 pounds and grew almost 2 inches in about 8 weeks. He is 13 now, will be 14 next month. He drank 8 of them a day for 8 weeks and now drinks 2 a day to maintain weight and just get the nutrition he needs.
 
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

I had a long post but it went "poof"

Elemental is better than semi elemental which is better than whole protein.
The more broken down the less work to convert to energy
Plus the less healthy small intestine needed to use to absorb it .
Peptamen jr is the most palatable semi elemental.
Still tastes bad though.
DS drinks it daily .
He did 9 weeks of EEN.
 
Thank you! Will investigate the Peptamen jr to see if it's something he can tolerate. With the pain from cramps and vomiting he is VERY motivated to try something that his tummy will tolerate.
I have spoken to the GI and the dietician and they both seem to think that he "doesn't need it"..."should be okay on regular food" and I am shocked to find that they have no clue as to what it's like to watch a child starve to death before one's own eyes. Let's just say that my sense of urgency is not THEIR sense of urgency.
 
Boost has shown to be easily absorbed by Crohn's patients. They do make high calorie versions. You can try those. I would talk to a dietitian as well.
 
Boost is whole proteins so it is easier than
Food to digest but has not been broken down as much as a semielemental or elemental formula.
 
Our story is above. My daughter was on Remicade and did 8 weeks Exclusive Boost and Ensure. It worked for her but her disease is primarily colon (and they say less likely to work in colon).

I discovered the carrageenan concern well into the treatment and flipped a little but talked myself down when I also considered all the drugs I was pumping into her and their risks. The carrageenan was far down the list of ingredients and it was making my daughter better so I accepted the risk for 8 weeks knowing there was an end in sight.

lilikoi - two schools of thought here. Go elemental and if he doesn't like the taste work your way back to the Boos/Ensure OR Go Boost/Ensure because they taste better and therefore make compliance easier and if his system doesn't tolerate it work towards elemental.

Are you going to try exclusive? Even if he doesn't do it exclusively, I don't see where the added nutrition wouldn't be of some benefit to him,

Good Luck!
 
Has anyone tried mixing peptamin (Jr) and Boost together to get the benefit of better flavour with some of the more easily digested formula? Carolinalaska - did you do that or just alternate shakes?
 
Tesscorn, we are doing that. We mix Ensure Plus with Peptamen Junior because she can't stand the taste of Peptamen Junior but can't tolerate the Ensure alone in her gut. She has done regular Ensure as well, but was finding it hard to drink so much. Right now she drinks about 1800 calories a day with 3 cans E+ and 3 cans PJ mixed 1:1.

Regarding the carageenan, I did a little research on that too. The amounts used are very small in comparison with the study, and it is not denatured like in the study. I'd prefer that she was getting all PJ, but she won't use the NG tube, and can't drink it :(, so we do what we can do...

I hope that helps.
 
I forgot, my son tried EEN for a few days, then honestly seemed to lose the will to live, let alone drink his Peptamen. Dr. advised that he begin eating 20% food. Son did that for a couple of weeks, which gave him the mental and physical strength to do EEN for 6 weeks. Would something like that be possible for your son to do?

My son was starving in the hospital, when they started giving him small amounts of food, never enough...as soon as his tiny breakfast was over, he'd be asking about lunch...then they told him no more food AFTER he'd eaten breakfast one morning. No warning...no goodbye meal and I think that was a mistake. They told us 90% of kids fail and that doesn't surprise me because it could have been handled much better!
 
^^^ yeah that
We planned
Bribed and paid by the week
Each day was on closer to the end of the week.
We did not plan for 9 weeks.
Just one day at a time
Since one day was better than none.
 
My son is on nothing but Remicade, some Boost and positive thinking:)
The GI sent him home from the hospital after the Remicade infusion with a "good luck" and "Eat anything but fiber and take some Boost". Well, after he suffered through his second fit of vomiting, diarrhea, and severe cramping in two weeks where he was unable to eat anything for 48 hours at a time, I am looking for something else to help him. I'm thinking of going the route of supplementing his diet with the elemental formula and letting him eat soft, low-residue foods throughout the day.
We have narrowed down the "Do not eat" list to avoid trigger foods and I'm in touch with a dietician who is more encouraging about EN.
I read an article published in the world journal of gastroenterology that makes the case for EEN and EN supplementation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691486/pdf/WJG-15-2570.pdf
I know every patient and parent has known this (via gut-instinct) but far too many Dr. in the U.S. are overly "Pharma-Focused" in their treatment plans. They think they can pump a bunch of chemicals and ever-more powerful drugs into their patients and all will be well.
I'm going ahead with supplemental EN with or without GI's blessing.
Thank you all for your valuable info.
 

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