update Great News after 1 week of total enteral nutrition

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Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 10/20/2009 11:19 AM (GMT -7)   
After a week of total enteral nutrition with Peptamen Jr. (elemental formula and Vital Jr.(semi elementla formula) my 12 year old daughter is doing amazingly well!

Only 2 BM a day, no pain, no blood, no cramps.

We went to see the GI today. Cata had a build up of the formula on her tongue, and the GI wanted to make sure it was not a yeast infection. It was just the build up and Cata scraped it off.(I read that in Beat Crohn's!)

The great news was the labs were in and her Sed. Rate dropped from 53 to 23!!!!!!!!!!!

We were all very excited, the GI was amazed and she is continuing with tapering off Cata from the Prednizone. She even mentioned she might be able to get off the other meds eventually.

We still have 5 more weeks to go, but this test has been a great motivator for Cata and all of us who support her.

I hope others give this a try. It is working great!

We will continue on semi elemental and elemental formulas but not Polymeric for now.

Warm wishes of health and happiness!!!
Mom of a 12 year old girl diagnosed on Oct. 2007.
Prednisone (tapering off)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Total enteral nutrition with Peptamen Jr and Vital Jr.

Post Edited (Catasmom) : 10/20/2009 12:32:55 PM (GMT-6)


Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 10/20/2009 11:25 AM (GMT -7)   
That is wonderful news! I'm happy for your daughter!
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/20/2009 11:39 AM (GMT -7)   
I'm so glad it's working! I hope it continues. Cheers!
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/20/2009 12:11 PM (GMT -7)   
That's super news! With the blood work to show improvement, maybe the insurance company will be more willing to provide coverage. I hope you're making progress in that battle. By the way, just for reference in case the insurance company needs to know, the Peptamen Junior is semi-elemental in the strict sense of the word, just like the Vital Jr., as it has peptides in it. I know they call it elemental on their Web site, there's more than one way of defining "elemental" and they're using a looser definition. Doesn't really matter, all that matters is it's working!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/20/2009 1:30 PM (GMT -7)   

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/20/2009 3:15 PM (GMT -7)   
Good news! In Great Britain, getting to remission using enteral nutrition is more common. It has been shown to be as effective as prednisone in achieving remission, without the nasty side effects. It is not universally used because it can't be continued forever and for some reason, doctors don't seem to understand how to identify food intolerances and formulate a diet to avoid them once the enteral diet is finished. They cite studies that show people who test intolerant to some food, not being intolerant on re-testing and other inconsistencies that prevent them from being able to just make a fixed diagnosis and prescription. The food intolerance is not the main cause of the problem and can disappear if the problem food is avoided for a period of time. Foods that promote bacterial growth (foods that are incompletely digested and provide gut bacteria with a source of food - usually starches/sugars/polysaccherides) are often a problem because they can feed gut bacteria that the immune system has developed a reaction to and those bacteria will end up triggering immune inflammation whenever the gut becomes more permeable.

The point of diets like the SCD is that they are designed to avoid growing large numbers of the bacteria that are so common in most people's guts who eat the normal meat and potatoes kind of diet. It is those common (in normal diets) bacteria that are most likely to have provoked the immune response that is the source of the problem. It is not the foods themselves that are the problem, just the bacteria that grow as a result of eating them. And even those bacteria don't cause an immediate problem until the gut becomes porous enough to allow them to pass through the gut lining and reach immune cells.

Gut permeability is caused by several things, including stress and illness, so it is nearly impossible to avoid. That is why avoiding feeding the bacteria that cause the immune reaction is critical. I am guessing that there are a few different bacteria that can be the source of this problem and different foods are preferred by these different bacteria. This may account for some of the variability of food intolerances among us. There may also be real food allergies as well and those would be completely individual.
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