PedIasure peptide...another type of treatment?

[nani0126]

My son was just diagnosed in april..hes 10. I have found this group to be wonderful and very supportive. Wanting to know if anyones ever tried a diet of just meds and pediasure peptide? my sons doctor wants him to drink 2 during the day have a big lunch and nothing else and drink 5 peptides through the NG tube while he sleeps. His meds are 40mg of prednisones(which hes weaning off of) pentasa 2500mg, 440mg of zinc, 2 viactid chewables and vitamin d and k. has anyone ever done thisdiet? was it successful? he's always hungry I don't want to deny him

 

[Jmrogers4]

My son did 8 weeks of Pediasure Peptide (8-9 a day, he was 14) and nothing else but water and 1-2 hard candies a day at the time he was on LDN and Pentasa. It wasn't enough to keep him in remission, he felt good while doing the EEN but as soon as food was added back in we had symptoms again. He was on Pediasure Peptide as supplemental nutrition and was allowed to eat whatever he would and drink 6-8 a day. He hardly ate anything but he did gain weight on it so it accomplished what we set out to do at that time. I think the idea was to have at least 3,000 calories a day.
I think clash's son is doing a similar percentage 90% EN and 10% food I believe he is on methotrexate as well though.

 

[Tesscorm]

Sounds like the GI is putting your son on a variation of Enteral Nutrition (EN) as a treatment. When the formula is used as the sole source of nutrition, it's called 'exclusive' EN. This is used to induce remission and has comparable success rates as steroids. This treatment successfully induced remission in my son. While my son ingested 3000 cal per night (his was all done overnight through ng tube), he was allowed no other food except for clear liquids (clear pop, broth, jello, freezies, etc.). Some GIs allow a small percentage of food along with the EN. I'm not sure but I believe some of the more recent studies have shown similar success rates when calories are 90% formula/10% food???

Also, many of the kids here continue to drink the shakes/formula as a supplement to maintain a level of nutrition and help growth along. Although my son is now 19, he continues to drink one to two Boost shakes each day.

If your son is hungry, there's no reason to withhold the 'overnight' shakes... let him drink one or two in the evening and then just give him the balance overnight.

I'm sure more parents will be along with more advice!

Good luck! :ghug:

 

[nani0126]

Thanks...this was a treatment I havent really read about so thanks for letting me know my gi isnt crazy. What is ldn and een? also my son has spats of pain throughout the day and night that last a couple of minutes but is eating normal(with somewhat of a gluten dairy soy free diet) , 2 pediasures (until ng tubes are put in)and kinda seems normal. Is he in remission? Not sure how to tell if hes still sick? Hes a tough little kid.

 

[Clash]

My son is on EN right now. He takes in 90/10% so 90% formula over night through ng tube and 10% food. He wasn't necessarily px'ed this as CD treatment but to gain weight as he was deemed " failure to thrive" at 17 he was 5'6.5" and 111 lbs the day before starting EN after 8 weeks he was 5'7.3" and 135.

Since his wasn't a CD treatment per se we really weren't restricted to 90/10 but it did tend to work out that way any way.

He is on methotrexate for his CD though in the past he was on both remicade and methotrexate and there was still disease progression. So we are in the process of making decisions of what is next.

He will drop back to taking 50% formula and the rest food next week if he so chooses.

 

[Jmrogers4]

LDN is low dose naltrexone and is a off label medicine some have had great success with, there have not been a lot of studies and most GI's will not prescribe it for precisly that reason. EEN is exclusive enteral nutrition so what Tess's son did as well as mine nothing by mouth but formula and water.
Unfortunately this disease can be silent and inflammation and damage can be going on while there are no outward symptoms. My son falls into this category as blood levels are always in the normal range even when inflammation is going on which was discovered by MRE. He also did not have really any symptoms other then lack of growth and weight gain.
Fecal calprotectin tests do show inflammation for him but not at levels that most GI's would even think twice about it has been a learning curve and have figured it out based on keeping a spreadsheet of his labs and what is normal for others for example ESR of 10 (normal range for our lab is 15 and under) for him signals disease activity while remission levels generally read 6-7. Make sense?
You will learn over time and trust your mommy gut when things just don't seem right. They are tough kids with high levels of pain tolerance as it becomes normal even when they don't realize it. My son broke his foot a couple of years ago in the morning, walked on it all day went to football practice and when I picked him up he had tears in his eyes and said his foot had been bothering him all day (x-ray showed it was broken)

 

[Tesscorm]

LDN is low dose naltrexone. It's a treatment with minimal known side effects but, as there haven't been many studies on using this drug as a treatment for crohns, not many GIs are willing to prescribe it for this reason. There a subforum for LDN under the treatment section. Kimmidwife 's daughter has also been using LDN with success for a while now.

EEN is the treatment your GI is suggesting (above) - exclusive enteral nutrition.

I'm not sure about the pain as this was never a symptom for my son.

If your son was just diagnosed in April, I think it's unlikely he'd already be considered to be in remission. It takes a while for the intestinal system to heal. Your GI will run blood tests to check for inflammation and other levels, as well she/he may decide to do imaging tests (colonoscopy, MREs, CT scan, etc.). Once all those tests are normal and your son is no longer having symptoms, then his GI may consider him to be in remission. However, that's not to say your son will feel sick the entire time... he may feel fine while healing is still taking place.

 

[Clash]

Oh meant to say my son uses Peptamen 1.5 as his formula for EN. Since he takes his all over night he inserts and removes his ng tube daily.

 

[my little penguin]

Ds was on EEN no food peptamen jr only for 9 weeks plus 6-mp.

Good luck

 

[nani0126]

Thank you all so much. I cant wait to feel I know my mommy instints are right and to be able to discuss all these meds by memory...theres just so much. Your children are blessed to have you. I will continue to try to become proficient on this like you awesome parents and will continue to read read read and be on this site. Thanks for helping calm me down. Im nervous and scared. Its all so new to me.