Son stopped gaining weight on liquid diet

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Amy2

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Mar 22, 2013
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He is 16, 5ft 8 1/2 and got down to 79lbs. When he got home from the hospital he gained 20 lbs in about 3 weeks. But, after switching to a strictly liquid diet about 10 days ago, he has not gained anymore weight. He's staying between 97 and 100 lbs. His liquid diet (Peptamen) is 3000 calories per day.

He feels good. No pain at all.

Should I be worried?

Thank you!
 
No advice sorry just sending tons of support.
Is he drinking or getting through NG tube? Is it possible to add another can or 2? Maybe he is just burning through calories? Wish I could give you a better answer.
 
Sorry, we are in the same boat, the small intestine location was the reason Jack was not gaining weight/growing at least according to his GI and the reason the supplemental EN was added recently and he did not gain weight until we had inflammation under control
 
Stephen had lost approx. 25 lbs before diagnosis (he was 16, abt 5'9" and was approx. 125 lbs at diagnosis). He did six weeks of EEN, during the six weeks, he gained 6 lbs almost immediately and then only 4 more pounds during the remainder of the six weeks. He was also getting 3000 per night. He was very active so dietitien thought he was just burning through the calories. She didn't want to increase the amount and wasn't worried as long as he wasn't losing weight. She did suggest that he might want to consider lessening his activities a bit (between hockey and phys.ed., he was doing 2-3 hrs of activity almost every day) - he didn't lessen the activity but also didn't lose weight, so we just continued. Once the six week EEN period was over, he continued with the formula on a maintenance/supplemental basis at 1500 cal/night, 5 nights per week and added back a regular diet. Over the next six weeks, he gained another 20 lbs (so 30 pounds over 3 months).

Since then (fall 2012), he has gained another 7-10 lbs.

Although our dietitien said his initial lack of substantial gain was due to his activity, it may also have been as JMRogers said... it took time for the inflammation to lessen (once the inflammation lessened, weight gain began).

Also, his inflammation is mainly in his terminal ileum but at diagnosis also had some in his colon and duodenum.
 
Although our dietitien said his initial lack of substantial gain was due to his activity, it may also have been as JMRogers said... it took time for the inflammation to lessen (once the inflammation lessened, weight gain began).
Click to expand...

Yeah That would be DS as well.

EEN gained next to nothing but was still inflamed.

EN plus food + pred + remicade--
grew 3 inches and gained 20 lbs.:cool2:

after only 1" and not weight gain for close to three years
 
I say don't worry! He may be using his energy to heal now that he caught up what he initially lost. I recommend giving it more time as long as he isn't losing. If he continues to not gain, then he may need something in addition. Are your docs starting him on a maintenance med for when he's off EEN? I recommend asking about it. It takes some meds 3-6 months to become effective.
 
Grace lost weight also on EEN and the Gi thought it was inflammation and put her on pred also. 3+ months and she seems a lot better.

HUGS
 
My son was on the same formula (Peptamin) with the same number of daily calories at the same age and the same weight. He took at least a couple of weeks or more before he really began to gain weight but started to feel much better before the weight gain began. He did EEN for 12 weeks and by the end had gained about 25 pounds... so hopefully it is just a matter of waiting a little bit longer for you too (I know I was impatient to see weight gain but our GI assured me that as long as he was 'looking better' not to worry!)
 
CarolinAlaska said:
I say don't worry! He may be using his energy to heal now that he caught up what he initially lost. I recommend giving it more time as long as he isn't losing. If he continues to not gain, then he may need something in addition. Are your docs starting him on a maintenance med for when he's off EEN? I recommend asking about it. It takes some meds 3-6 months to become effective.
Click to expand...

We are planning on trying the SCD without medication, as that is what has been working for his sister for 7 years.

What meds are you referring to? He's currently taking Pentasa and Previcid.

Doc said nothing about maintenance drugs, that I can recall. I thought he mentioned tapering my son off drugs, in the not too distant future.
 
Because of what I learned on this board, my son is not eating solid food and his doc gave his okay (even though he still thinks it would be fine for my son to get 20% of his calories from food) but how will I know how long to go with only Peptamen - 6, 8 or 12 weeks?
 
I don't know how GIs choose the length of time??? With us, there didn't seem to be a question (at least, not in front of us...), we were simply told six weeks and extending the time was never brought up.

There are probably some studies in the subforum for articles and research and you can probably find more info in the Treatment subforum and/or the Media, Research, etc. subforum (all links below).

Maybe someone else can give you some advice...

http://www.crohnsforum.com/showthread.php?t=43002
http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/forumdisplay.php?f=29
 
My impression is that it averages 8 weeks but that there is no 'gold standard' yet for the perfect length of time. It seems to vary by country, doctor, severity of disease.... and, likely individual ability/motivation to keep up with not eating.
 
^^ yeah That

Ds started out with a plan for 7 weeks
ended up with 9 when it was apparent it wasn 't enough with 6-mp for him at the time.
Gi then added a small dose of pred for a boost.
 
We were told my son's inflamation was normal (12) at his 2 week check up, when he was still eating 20% food, he'd also gained 20lbs and was feeling great. Before starting solid food, what needs to happen exactly? What are the doctors looking for?
 
Does he still have symptoms??
DS never got rid of his symptoms- His ESR and CRP went down but symptoms did not go completely away.
what and where did they see damage on his scope?
make sure to get copies of all reports and tests

that may influence how long he is on formula only.
Ds is still on formula but with food a year and half after starting EEN.
It is nice for the I feel horrid days and do not want to eat so he doesn't lose a lot of weight.
 
His symptoms were weight loss, constipation and moderate stomach pain with his BM. He only began to have diarrhea shortly before he was hospitalized, but it was still only once a day. All of his symptoms were gone a few days after coming home the hospital.

When he was scoped, he had no penetration or constriction, just inflamation.
 
My understanding is that a high percent of patients relapse after achieving remission from EEN alone. Our doc put my daughter on 6 MP to maintain the remission. Those kids who can tolerate some form of continued nutritional therapy (night feedings or 1 month exclusive EN every 3-4 months) can also use that as their maintenance therapy pretty successfully. My daughter can't do the NG tube thing, so other than continuing supplementing for weight, we had to go to meds for maintenance.
 
The science behind the nutritional therapy is similar to the SCD and so we are going to try that first, without drugs, since it worked for our daughter so well.

It took about a week, but my son gained another pound. And at 100.5 lbs, he just looks like your average skinny kid, not like an Auschwitz survivor. :)
 
My son did EEN for six weeks to induce remission. During the six weeks, it took his CRP from 136 to 4 and his ESR from 63 to 9. I think I've shared this with you before (don't want to bore you with the same story :)), he ended the EEN in July 2011 and since then has been on only partial EN as a treatment (with no restrictions on diet except seeds, nuts,etc.)

Since July 2011, he has had few long lasting symptoms (relatively mild symptoms never lasting more than a few days) and has continued to gain weight and height. However, his CRP and ESR have fluctuated during this time (CRP between 6.5 to 30, ESR 4 to 30) and it did not eliminate all the inflammation. He just recently started remicade as his GI was concerned about the continuing inflammation. For now, he is still on partial EN.

FWIW, we never slacked off the prescribed dosage - I was very insistent that he NEVER miss a night of the prescribed EN (5 nights per week - the two nights off gave him flexibility to sleep at friends', etc.); I got the impression from the nurse at his previous clinic that most patients don't continue with the dosage for as long as Stephen has... (The first time we deviated was this past Christmas when we went away but, even then, I took Boost and Ensure shakes with us...)

It has worked amazingly for us without the concern of the side effects, however, it is not a cure-all... just keep that in mind :ghug:
 
^^^ yeah that
using SCD in adults is different than child onset IBD.
EEN has been proven in children as Tess said. EEN does not work as well in most adults.
Not saying it won't work . It may since what works for one doesn't necessarily work for another.
Just be sure to continue imaging and monitoring blood so you can stop a flare early if needed.
 
Day 19 no food. 102 lbs, so he's gained a little. Feeling well, EXCEPT during his last B.M. 2 days ago. "Took quite a while and was very tiring." (rough on him and took about 20 minutes). First bad one since leaving the hospital on 3/7. :confused2:
 
Sorry to hear that he had a rough BM. Hopefully it won't be a regular problem. Congratulations on the weight gain!
 
Another bad BM yesterday. This one actually hurt, it burned. Doc on call said to stop taking his calcium and up his Previcid by one a day (to 2). And see if that helps. :(
 
CarolinAlaska said:
Sorry to hear that he had a rough BM. Hopefully it won't be a regular problem. Congratulations on the weight gain!
Click to expand...

Thanks! It's the first time my son has weighed more than a hundred in his life.
And it has crossed my mind, if he has to go back into the hospital, at least he's 20 lbs heavier than he was the last time!
 
Woohoo for the weight gain! I'm saying the same thing if something happens at least he has the weight to lose now.
 
I don't have any new knowledge to add to the thread, but I saw your son had gained weight and that is *always* exciting!! I hope his BMs get better! Awful to sit there for 20 minutes :( Hope this blows over and he just continues to feel better!!
 
Not perfect, but better BM today. Fast and only moderately uncomfortable, so breathing a sigh of relief, for now.
 
6 more days until FOOD. My son has been having quick, painless B.M.s, once or twice a day, looks good and feels good, but he still weighs 101 - 103 lbs.
 
That's good that the bm's are not painful anymore. He must be getting excited about the food - I remember my son really looking forward to it for the last few days!!
 
Yes, Stephen couldn't wait to eat!!! He knew he was on his last 'week' but I didn't give him the final date until just a couple of days before... I thought it would be a slow agony counting down those last few days! :lol: But, food was heaven when it came!!!

Amy2, Stephen only gained back 10 pounds throughout the six weeks (and, six of those, were in the first week or two), he really started to gain weight AFTER the exclusive period, when we kept the supplemental dose (1/2 the dose, 5 nights/week) and added back food! :thumright:
 
He is very much looking forward to food!! :)

My son basically stopped gaining weight 2 weeks ago. I'm not that concerned, since he feels good and hopefully he will begin to gain again, when he starts eating.

Since Peptamen conflicts with SCD, we won't be able to use a supplemental dose of it.
 
Out of curiosity, how does Peptamin conflict with SCD?

I have never tried any sort of diet with Stephen - he's such a picky eater, it truly would have been a horrendous exercise (for the entire family! :eek:) to try to change his eating habits to that extent, plus we have been lucky in that there have been no foods that really bother him (even less motivation :)). So, I have NO experience in trying or researching the diets. Keeping this in mind...

I'm just wondering if the benefits of following the SCD strictly (at the cost of eliminating supplemental EN) will really outweigh the benefits of keeping supplemental EN and following SCD only with food??? Speaking only from my own experience, Stephen has done amazingly well with the supplemental EN. He has filled out sooo much since starting EN. He's only grown approx. 1 inch, however, I think this has more to do with him having been close to his adult height already (he was 5'10" at diagnosis, is now 5'11") but, his weight gain (including muscular gain) has been fantastic!!! He was approx. 150lbs before being sick, down to 125 when diagnosed and now at 170! And, most of this is healthy muscular gain (ie filling out). And, this has happened even though MREs have shown chronic inflammation at his TI. EN did not rid him of the inflammation but it provided him with necessary vitamins and minerals.

There is absolutely no doubt in my mind that he would NOT have accomplished this on a regular diet alone (especially with his diet). I truly believe that the nutrients he's absorbed are the reason he looks good, feels good and seems quite healthy (crohns aside).

I'm not at all trying to suggest that you shouldn't follow SCD, I'm just wondering if he wouldn't benefit from following SCD but ALSO keeping supplemental EN??? As I'm not familiar with how SCD works, I really don't know if keeping EN will negate the benefits of following SCD with food?
 
SCD is very strict. There are legal and illegal foods. Some of Peptamen's ingredients are illegal and my son's nutritionist agreed it conflicts with SCD. One even has to take special vitamins on SCD. She plans to take my son completely off Peptamen in about 10 days. Monday he will eat 25% food...3 days later, he will eat 50% food...etc. only going to the next step if he's doing well, of course.
 
Today my son will reduce his Peptamen from 8 to 6 and HE GETS TO EAT FOOD. He will have yogurt, vegetable broth, eggs and cheesecake with pineapple slices. We're all pretty excited!!! :)

He got up to about 105, but then lost a few when he went back to school (stress).
 
Hey Amy - How exciting!! Real food! :banana: hoot! hoot! :banana:!!

I'm curious - about the pineapple slices - that is on my son's no-no list because it is a natural laxative and so acidic. It is personally one of my favorite fresh fruits (we used to live in Hawaii and wow!! yum, yum!!).
 
This is totally a different approach then we had with my daughter. Wow! I hope it works for your son. How did today go?
 
Had a fried egg at 11:15 the night before, on the 5th. ;)

His appetite is really good...hard to stick to the 25% food, but he did pretty well on day 1, except he fell asleep before drinking his last 2 Peptamen for the day and I didn't catch it...big oops. He had a quick, painless BM yesterday (the morning after he'd eaten the egg) but got a stomach ache at school in the afternoon, which he thinks was caused by stress, not the food. Yesterday he drank all of his Peptamens for the day, before eating any food (besides a little breakfast) to make sure he got them all in. Then he enjoyed his food and went to sleep with a full belly. He feels good this morning, but hasn't had a BM yet.
 
One thing we learned when transitioning is to watch for dehydration. Dehydration causes stomache aches. Make sure he keeps up his water intake.
 
Amy2 said:
He is 16, 5ft 8 1/2 and got down to 79lbs. When he got home from the hospital he gained 20 lbs in about 3 weeks. But, after switching to a strictly liquid diet about 10 days ago, he has not gained anymore weight. He's staying between 97 and 100 lbs. His liquid diet (Peptamen) is 3000 calories per day.

He feels good. No pain at all.

Should I be worried?

Thank you!
Click to expand...

No Wheat or Gluten ! No Advil with other medicines !
 
Just giving you our experience while on Pred so you have something to compare...

My son was 92 lbs at diagnosis and started Prednisone 3 days later. A week after that he was 96lbs, 104 a month later, 111 a month after that. He then went off of Pred and two months later was 115 lbs. Two months later 118 lbs. He has continued that pattern up until about a month ago when he went up to 132 lbs. He just had a normal Fecal Cal for the first time and is eating like a horse so I think that is the reason.

From looking at Johnny's records I would say that increased calories and lessened inflammation were the two major issues. While on Pred he took in more than 3000 calories per day and still does now at times. His SED rate and CRP were normal 6 days after starting Prednisone. The inflammation took a whole year after his SED and CRP were normal to really settle down. He had a bit of a set back this summer but otherwise it has been steadily but slowly getting better.

I hope that helps. I totally respect your decision to do EEN. In fact, I wish I would have known about it when my son was first diagnosed because we may have chosen that route . Just wanted to offer you our experience because I appreciate knowing all the options.

I am sure that weight gain will come soon once his body has had a chance to heal. It took my son much longer than what I anticipated.

((((Hugs)))))
 

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