We've added Enteral to the mix

[Charleigh]

We've added Enteral to the mix *UPDATE*

E began LDN a few months ago. While it has been an improvement, it hasn't been the magic bullet we'd hoped for :/
We met with a research doctor at Chapel Hill and he wanted us to try Enteral. They suggest Ensure. Today is two weeks of a completely liquid diet for E. He is very happy with it. I'll be requesting labs in a few weeks to see how his bloodwork is looking. Holding my breath.....we'll see!

 

[Spooky1]

I do wish liquid feeds were around when I was 13years. Life was a nightmare back then and it can really interfere with life. Hope 'E' is generally improving. they do say liquid feeds have better results in younger ones that have not had surgery. I sincerely hope he goes into remission and gets to enjoy his teenage years. Keep us posted, Charleigh.

 

[Charleigh]

We just had blood drawn. He was on a liquid diet for 6 weeks at the time of the draw. His c-rp has dropped to a 4. He has put in 4 pounds. For the first time, his RBC, vitamin d, iron, etc were normal. His platelets and Sed are still a bit high. Hopefully with time. We are trying to decide how many more weeks to stay 100% liquid. At least 2 more but we've considered longer.

 

[Jmrogers4]

Hope this is the boost that LDN needs to get to remission. For what it's worth it took us a long time to really get there (about 7-8 months). I can't remember when E started on the LDN

 

[Charleigh]

Hope this is the boost that LDN needs to get to remission. For what it's worth it took us a long time to really get there (about 7-8 months). I can't remember when E started on the LDN

We were debating whether to keep the LDN in the future? Do you think we need both? The $ is killing us!

 

[Clash]

Studies have shown when EEN is withdrawn inflammation does return. That is why it is used in the same way the steroids are, to get inflammation down while allowing maintenance meds to reach therapeutic levels. So if your choice is LDN, then it would be deemed the maintenance med. Rates of remission aren't great for using EEN to EN as monotherapy especially in children as studies have shown that EEN isn't as effective after the first time.

My son's nutritionist did mention EEN to EN in cycles as a monotherapy. The efficacy was great during first cycle but on subsequent cycles there wasn't great benefit. I don't have these studies on hand as the GI went over them with us at the last visit. A Google search may locate them though I'm not sure of the title.

Would it be possible to continue EEN until the rheumatologist appt as that may have an affect on treatment going forward?

 

[Jmrogers4]

Clash said it, EEN works like prednisone and cuts the inflammation for the maintenance meds to take over and keep it knocked down so it should be able to be discontinued and LDN would be working by then.

 

[Charleigh]

The research doctor we are working with says that patients can typically maintain remission if 60% of their calories continue to come from enteral. I do not have the experience or knowledge ya'll do so please correct me if there is a mistake in my thinking.

 

[Jmrogers4]

There have been some recent studies about EN having the same effect at 80% or 100% but I think Clash may have some more information on that as I believe her son was on the 80% recently.
I have not heard of 60% being used to maintain remission but now I'm curious so I'm off to do some research

 

[Clash]

Sorry I can't help either. The CHOP seminar the GIs and nutritionist at my son's office attended did involve a study that stated the use of EN at 80% had near exact results as 100% and better compliance.

There may have been more to that study as the nutritionist seemed excited that it could be used as treatment therapy and that kiddos would be able to forgo meds. But since we weren't doing EN for treatment only for weight gain I didn't get details from her. The GI(who also attended the conference) felt EN was a good option in replacement of steroids and the nutritional boost was a definite advantage but did not feel it could sustain remission with cyclic use.

 

[Charleigh]

Oh man, DS really wants off the LDN altogether. His focus has been much worse since being on it. He says he feels "off". He struggles with focus anyway.

 

[Clash]

My little penguin, may have more information.

I do know Tesscorm's son did EEN for either 8 or 12 weeks then started EN at 50 or 60%(all using ng tube). He did this for over 2 years with no other treatment but they weren't able to get rid of the simmering inflammation and decided to move on to remicade. They are pleased with the results from remicade and I think he tries to now drink two boost shakes a day(his EN formula was tolerex) since he is at college.

 

[Jmrogers4]

^^^ Yeah we experienced some of that on LDN. It has gone away since being off it.

 

[Charleigh]

^^^ Yeah we experienced some of that on LDN. It has gone away since being off it.

Good to know that it isn't just us. His focus was awful. E actually stopped taking the LDN because of it. What we haven't decided? Now that we know he hasn't been taking it, are we going to let him stay off of it? At least he finally fessed up that he'd stopped. His focus is improved. School work was getting nearly impossible.

 

[Tesscorm]

S did do six weeks exclusive and then his maintenance was 50% of the exclusive dose (not a percentage of daily calories - we were never asked to track or compared to caloric intake). While on exclusive, he was taking in 3000 cal/day (7 nights/wk), when on supplemental, he went to 1500 cal/day (but only 5 nights/wk). It did take him into clinical remission quickly and labwork showed improvement. However, throughout the two years, after the initial improvement (ie 3 months or so after dx), that remaining inflammation stayed. It seemed supplemental EN was enough to control but not enough to completely eliminate the inflammation. If you're starting out with zero inflammation, perhaps, it is enough to 'control'?? IDK??

When we transferred from ped to adult GI, he felt strongly the simmering inflammation would eventually lead to damage, hence remicade. MRE a few weeks/months after starting remicade showed significant improvement when compared to pre-remicade MRE.

Now, 1.5 years later, he is still on remicade and drinks 1-2 Boost shakes per day. I don't know if they are doing anything BUT the nutritional benefit is there. He's away at university so I know junk food is part of his diet - the nutrition from the shakes, hopefully, helps offset that. I also read a study that showed using supplemental enteral nutrition (average 1200 cal/day) increased remicade's success rate by a decent amount (can't remember exact number). S is not taking in 1200 cal/day but, figure what he is taking in can only help. I did repost the study in the Kid's research section...

 

[my little penguin]

DS takes 500 to 750 cal per day and has since he got off full EEN three years ago.

I haven't look into the 60% EEN program since DS is beyond that trying to control arthritis and crohn's .
I have heard a lot about the chop program (80/20)
All previous studies using partial en did not have high success rates but again those were really old studies .

 

[my little penguin]

BACKGROUND: Enteral nutritional therapy (EN) is an effective modality for inducing and maintaining remission in pediatric patients with Crohn's disease (CD). The standard protocol for EN provides patients with 100% of their caloric needs for induction of remission. The aim of this study was to determine the efficacy of delivering 80% to 90% of patient's caloric needs through EN, to induce remission in pediatric patients with CD. This approach allows patients to consume remaining calories from a normal diet.

METHODS: A retrospective review of charts from 1998 to 2010 was conducted at The Children's Hospital of Philadelphia. remission (Pediatric Crohn's Disease Activity Index <10) and response (decrease in Pediatric Crohn's Disease Activity Index score of ≥12.5 points) were calculated before and after treatment with EN. Weight z scores and laboratory parameters were evaluated in all participants.

RESULTS: Forty-three charts were evaluated. Mean age of participants was 12.8 years (5.1-17.4), 67% were male and 33% female patients. remission and response were evaluated in a group of 23 participants, with no missing data. There were reductions in erythrocyte sedimentation rate (P < 0.0001) and C-reactive protein (P < 0.02), and increases in albumin (P < 0.03). Mean Pediatric Crohn's Disease Activity Index score at baseline was 26.9 and was reduced to a score of 10.2 at follow-up (P < 0.0001). Induction of remission was achieved in 65% and response in 87% at a mean follow-up of 2 months (1-4 months).

A novel enteral nutrition protocol for the treatment of pediatric Crohn's disease.

AuthorsGupta K, et al. Show all Journal
Inflamm Bowel Dis. 2013 Jun;19(7):1374-8. doi: 10.1097/MIB.0b013e318281321b.
Affiliation



From
http://www.ncbi.nlm.nih.gov/m/pubmed/23567777/

 

[my little penguin]

http://www.limelightdc.com/clientarea/naspghan_een_podcast_1_14/

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