Still on Remission with enteral nutrition

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Catasmom
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Date Joined Sep 2009
Total Posts : 54
   Posted 3/22/2010 9:51 AM (GMT -7)   
I just wanted to update you all about Cata (12 year old daughter).
She is eating regularly, although I have cut back on complex carbs as much as possible, and she is still supplementing with E028 Splash (3 cartons a day). Anual cost f the formula $3000... I'm working on the insurance covarage. Sure beats the cost of Remicade.
She is doing wonderfully.
Since we started with enteral nutrition she went from 87lbs. to 109lbs. in 3 months. Her energy level is high and has only one normal BM a day.
I've been telling everyone I know about this, and would love to help anyone who wants to try it.

Mom of a 12 year old girl diagnosed on Oct. 2007.
did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (10 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
Warm healing wishes from the Miami beaches....


crohnielass
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Date Joined Mar 2009
Total Posts : 1118
   Posted 3/22/2010 12:06 PM (GMT -7)   
Hi catasmom,
Thats fab! glad to see Cata is doing well and putting on some weight long may it continue for her Bevx
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/22/2010 1:20 PM (GMT -7)   
Hi: Can you tell me what enteral nutrition is. I've heard of it but am not sure what it is. I am looking at my options now. Thanks, Debbie
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 3/22/2010 4:25 PM (GMT -7)   
Wonderful!

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/22/2010 4:37 PM (GMT -7)   
ty for the update
lyn
Long Time Member of da Family

Crohns..Fibromyalgia,,Neuropathy...Deaf...Seizures Pyoderma gangrenosum


Co mod for Crohns...Anxiety/Panic and Alzheimers

lyn


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/23/2010 6:22 AM (GMT -7)   
Cata's mom,

It sounds like Cata's doing great. Terrific about the 20+ pound weight gain! Like you, I wish more people would give this a try. Good luck with the insurance battleā€”I suspect you will eventually triumph.

Dietcoke,

Enteral nutrition is an old treatment for Crohn's, developed back in the sixties. It involves the use of a full liquid-formula diet to induce remission, or use of the same meal-replacement drinks as a supplement to a regular diet to help maintain remission. Not everyone responds, as with all other treatments for Crohn's, but it can be as effective as steroids. (Unlike other diets hypothesized to work for Crohn's disease, this one has been tested against steroids in randomized, controlled trials.) Hope that's a start.

Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 3/23/2010 6:42 AM (GMT -7)   
Yes! It's been amazing. She's quiting the little predinzone she is still on soon.
 
Let me add that in the case of children enteral nutrition has show to have a success rate of about 90% to induce remission, shown through clinical trails.
I really hope more people and doctors use this treatment.
Do you know that I search the CCFA.org site and NOTHING on enteral nutrition came up? I just could not believe !
 
Thanks again for all the good wishes.

Mom of a 12 year old girl diagnosed on Oct. 2007.
did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
Warm healing wishes from the Miami beaches....


vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 3/23/2010 6:46 AM (GMT -7)   

Hi that is great news about your daughtersmile

My 16 year old son went onto it for 7weeks, he only managed to gain just under 3 lb though,but now back on solid food(eating everything in sight) he is now gaining weight (currently around 108/110 mark) He supplements with one liquid feed and one high calorie shake a day. He is still on the drugs too but he is gaining weight which is no bad thing.

Hope things continue well for you


Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 3/23/2010 5:28 PM (GMT -7)   

Vixen: That is wonderfull!

Is he doing it oraly or with the tube?

What formula is he on for the liquid feed?

How did you find out about enteral nutrition?


Mom of a 12 year old girl diagnosed on Oct. 2007.
did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
Warm healing wishes from the Miami beaches....


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 3/23/2010 7:46 PM (GMT -7)   
So great to hear that Cata is doing so well still.  As for us, we are still holding on to a full case of the grape flavored EO28 Splash because my daughter thinks it tastes awful and refuses to drink it.  She's doing much better on 6MP at this time.


  • Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 3/24/2010 4:49 AM (GMT -7)   

    Hi MoobyDoo,

    Every child is a bag of surprises, so keep trying. We used the elemental formula, but even semielemental and polymeric formulas work. So you could try with other stuff sold in any supermarket or pharmacy.

    I'm glad the 6MP is working for her. Cata is still on it too. I wish the GI would stop the med, but for now, this is what we are in for.

     


    Mom of a 12 year old girl diagnosed on Oct. 2007.
    did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
    Warm healing wishes from the Miami beaches....


    vixen
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 794
       Posted 3/24/2010 9:31 AM (GMT -7)   
    He is doing it orally, as he is at school I guess he didn't want to draw attention to himself with a tube. I recall when the dietician told him that if he couldn't take it orally then he would get a tube-he was shaking his head furiously!!
    He is on the fresubin energy drinks (200ml bottles equalling 300 calories) For the seven weeks he was on 8 a day! The high calorie shakes again are by Fresubin(come in sachet and are added to full fat milk-these shakes are not nutritionally complete but are high calorie)
    He was only diagnosed Nov 09 and we were referred to a fairly new consultant at the hospital who had used enteral nutrition at his previous hospital(with good results) and he was of the opinion that it would be better to give that a try first rather than hit him with the steroids. The pain stopped and he did gain those couple of pounds but when food was re-introduced he did get the sort of feeling he used to get before the pain came so he was then put onto steroids(now tapering of). He then packed on around 14lb in 3 weeks although at this point not to sure whether this is down to the steroids giving him an increased appetite, and/or fluid retention all whether the shakes are doing their bit. The past couple of weeks his weight has remained unchanged(despite eating any/everything) They want him to put on at least another 11/13 lb. He is painfree though( End of May till middle of July is big exam time for him-just hope the stress doesn't knock him back again)Like your daughter his energy is up too.
    I think that it is good that your daughter is getting this early on-at least her body will be getting the nutrients that it needs, son's body has been deprived so are now waiting for an appointment to come through to see an endocrinologist (to see if it possible to give him something to help him grow a few more inches). I hope that your insurance does pay for them, it has got to be healthier and cheaper in the long run.
    Mooby doo- We have a glut of lemon energy drinks hanging around that son has 'gone off' Daughter is home from uni and is using them to replace some meals as she is trying to lose weight!

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 3/24/2010 11:02 AM (GMT -7)   
    Vixen, thanks for the info. It sounds like he is on the right path.
    Let me tell you that as soon as my daughter packed those pounds, she got her perios. The GI said it was a good sign, that she was healthy.
    As a way to help with the balance of bacteria in her gut she is on probiotics (VSL#3) which I add to 1 1/2 cups of home made yogurt every morning, with fruit and honey. There are many probiotics out there. This one was used in clinical trails with great results.
    My daughter stopped putting on weight now. She will grow some more, but has not added weight at the same rate. She has not lost any weight since tapering off the prednisone, so I guess it's all due to the enteral nutrition.
    Thanks again for all the info.
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
    Warm healing wishes from the Miami beaches....

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