Has anyone read this book...going to hear author speak out of my curiosity

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HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3130
   Posted 10/18/2009 11:31 AM (GMT -7)   
Local newspaper had article titled "Controversial Therapy" and when dear husband saw it was about Crohn's he made sure I read it.  Margaret Oppenheimer is reportedly from the Rochester NY area and wrote a book called "Beat Crohn's! Getting to Remission with Enteral Nutrition".  The article says she "will talk about pros and cons of tube feeding and why she believes it can be as effective as steroids, especially in children, although rarely prescribed in this country."
 
My feeling is that, like those diets where you buy their select foods, eventually you have to go back to "real" food and then what happens.  I am going just to hear her thoughts and see what her perspective is.  Has anyone read the book here? 
Anyone else in the Western NY area that wants to attend?
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 10/20/2009 11:40 AM (GMT -7)   
I read the book, and my daughter has been on enteral nutrition for a week, doing amazingly well.
Read the book, it is very interesting and has lots of advise.
When we are over the 6 weeks of totla enterla nutrition we are going to start incorporating food slowly, bland diet, stage 1 and Stage 2.
I've read the makers diet and a bit about SCD, but I don't know what we will do from there.
Anyways, this enteral nutrition seems to be a great place to go back too when my daughter flares again.
By all means read the book, its easy to read, simple and the diet is simply formula.
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.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 10/20/2009 11:43 AM (GMT -7)   
ummmmm....she's a member of this forum! :-)

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 10/20/2009 11:51 AM (GMT -7)   
Oh! And yes, I've read the book! Very good! *Extremely* well researched and documented. Not sure why the paper would label it "controversial" when it's quite accepted in other countries.

My son drank what she tells me is a "semi-elemental formula" for 10 days when he began a flare. He drank this exclusively; consumed no other food. It stopped the flare in its tracks.

Catasmom, I'm so happy to hear that your daughter continues to do so well!!!

Catasmom
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Date Joined Sep 2009
Total Posts : 54
   Posted 10/20/2009 6:37 PM (GMT -7)   
Emom, so good to know you had good experience with enteral nutrition too!
Your son is on SCD now, right? or is it the Makers Diet?
I am wondering what we'll go on to once we are off the enteral nutrition.
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.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 10/20/2009 8:12 PM (GMT -7)   
Catasmom said...
Emom, so good to know you had good experience with enteral nutrition too!
Your son is on SCD now, right? or is it the Makers Diet?
I am wondering what we'll go on to once we are off the enteral nutrition.


Catasmom, are you familiar with both diets?

We initially started with The Maker's Diet but after about 5 to 6 months I began using more SCD recipes. I still use many principles of the Maker's Diet, though, such as purchasing organic fruits and veggies whenever possible and incorporating coconut oil. In fact, there are a lot of good, super healthy products I learned about and still use from the MD. However, the two diets are really quite similar, so it's easy to use aspects of both.

Whatever you decide, I would start out with the intro diet and move on very slowly. Imo, Elaine gives better guidelines in her book and on the websites on exactly how to do this. I also am not very creative in the kitchen, so once we moved on to the "advanced foods" I really appreciated the vast online data base and many cookbooks available that are SCD compliant.
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


imoveritall
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/9/2009 11:06 AM (GMT -7)   
Hello all,
 I normally do not read many forums, and have never posted on any; I was looking up Margaret Oppenheimer, hoping to find her email address and found this forum thread.
 
My daughter, age 11yrs, uses enteral nutrition with great success and has for the entire year (dx Sept 2008) since diagnosis. She'll likely use it throughout her teen years, as long as she remains willing. I don't understand the posts that speak of it as a "diet" and mention "what happens when going back to regular food".
She eats regular food, in varying amounts. Some days she eats well, and therefore I reduce the amount of formula that day, and on days when her appetite is poor ( she has intermittent early satiety) she receives more formula; this keeps her daily caloric intake fairly reliable. She does not drink the formula, rather, she places an NG tube nightly and the formula is delivered via feeding pump. In the morning she simply removes the tube and goes about her day. 
When very sick and symptomatic, at diagnosis, she ate almost nothing for the first two  months but the formula provided complete nutrition. What a relief it was and is to know that mal-and undernutrition isn't a worry with her as it is for so many ped Crohn's patients.
It has NOT brought her to biochemical remisssion ( lactoferrin is always high) but she is in clinical remission and lives a normal life, grows like crazy, (4inches in 12 mos, 40 pound weight gain) and started puberty.
At diagnosis she was 59 lbs, down from her norm at that time of 78lbs. She is now 106lbs and this is NOT steroid weight; she hasn't been on steroids since diagnosis, for six weeks total including wean. This is true lean mass. Her BMI according to her GI is "perfect".
Any parents who would like to know more please feel free to email me. Hope this helps someone considering ( or doubting the efficacy of ) this excellent yet grossly underused treatment.
 
16. Do not post offline personal contact information (ie. your home address, phone numbers etc.) and do not ask for personal information from others.  Modify your member profile in the Control Panel (VIEW IMAGE) at the top left corner of the forum to set privacy settings for your account.  Use of full names (your first and last name) is allowed but strongly discouraged.  This is to protect your security and identity.
 
11yr old female patient
Crohn's disease
Dx Sept 2008
No medications at this time
Enteral nutrition VitalJr formula 
    

Post Edited By Moderator (Nanners) : 11/9/2009 11:53:14 AM (GMT-7)


Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 11/9/2009 2:12 PM (GMT -7)   
Hi imoveritall

Yes, this sounds like what we are going through. Cata has only 14 days left of total enteral nutrition (she does it by mouth, not tube, her favorite formula is SPLASH form Nutricia). We will have labs by then. She is looking forward to at least some turkey for thaksgiving!
Thanks for the post.
I miss wrote when I said diet, it is actually nutrition, and we will continue with it as a supplemental. The SCD books mentions the elemental nutrition several times in the book Breaking the vicious cycle, and it is the only choice I have for now, for Cata is not willing to do SCD.... for now.
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.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/9/2009 7:14 PM (GMT -7)   
Habs,

I have emailed with the author and contributed a story. She was kind enough to give me a copy of her book. I would love to hear her speak. I am sure you would enjoy it.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/9/2009 7:52 PM (GMT -7)   
imoveritall,

Great to hear your daughter's success story!

Fitzy,

Hope life is going great as a new member of the bar :)

imoveritall
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/10/2009 6:47 AM (GMT -7)   
Hi Catasmom,
I don't blame her for not wanting to do such a restrictive diet as SCD, though it may very well help her, getting a kid to abide by dietary rules is difficult and a constant struggle. Why I love the formula, especially via NG tube: it's so easy, it happens while she's asleep, and doesn't affect her daily life at all. She eats whatever she wants during the day, yet if she cannot eat much on any given day, I know her caloric and nutritional needs will still be met. The results were dramatic for her. It continues to astound me why all ped IBD patients aren't put on this at diagnosis, to prevent the almost inevitable nutrition issues they face with the malabsorptive effects of Crohn's.
If a picture of my daughter at diagnosis, and a picture of her now were shown to parents, they'd understand. The value of this treatment is very under-recognized.

Oh and thanks, Writer, for the welcome. :-)


Patient 11yr old female
Crohn's disease
Dx Sept 2008
No medications at this time
Enteral nutrition VitalJr formula

Post Edited (imoveritall) : 11/10/2009 10:16:01 AM (GMT-7)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/10/2009 7:46 AM (GMT -7)   
Authors like that dont come down here to the swamps to talk about their books. I guess they are afraid of becoming a menu item for the gators and snakes. She would get questions she could not answer also , like. How much gator can I eat ? Is a half sack of crawfish ok at one sitting ? How much red pepper is too little ? Last night I ate an apple and drank a six pack of beer,,made me sickkkkkkkk,,you think I should stop eatin apples ?
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/10/2009 9:40 AM (GMT -7)   
OK, I checked it out, low fat, high in protein, tastes like chicken or pork, I'm game, show me the gator. We have to have an agreement on this though—I get to eat the gator rather than it eating me. (I can't tell you how much gator to eat without personal experience.)

Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 11/10/2009 12:08 PM (GMT -7)   
tongue tongue turn turn smilewinkgrin smilewinkgrin turn turn tongue tongue turn turn yeah yeah tongue tongue smilewinkgrin smilewinkgrin tongue tongue smilewinkgrin smilewinkgrin turn turn yeah yeah tongue tongue :-) :-)
Sniper LOL.... sooo true!
tongue tongue turn turn smilewinkgrin smilewinkgrin turn turn tongue tongue turn turn yeah yeah tongue tongue smilewinkgrin smilewinkgrin tongue tongue smilewinkgrin smilewinkgrin turn turn yeah yeah tongue tongue :-) :-)
Writer, I could mail you some gator!!! Fedex overnight.... we do samples too!!!!
Or better still, come visit. Temps in the upper 80's here today, and no news of any "cool" front in the horizon!
turn turn yeah yeah tongue tongue smilewinkgrin smilewinkgrin tongue tongue smilewinkgrin smilewinkgrin turn turn yeah yeah tongue tongue :-) :-) smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin turn turn tongue tongue yeah yeah yeah yeah
Thanks imoveritall... we are on the same wave length here. I hope my 12 year old could meet your 11 year old one day and share.
We will continue with the splash, it's easy, really, each little box packs 237 cal., so one or two per meal will do the trick. I am also surprised that ped GIs don't even mention this. If I had not read the book, I would not know!!!! Thanks to the public library I got it the same day the Gi was suggesting Remicade! UFF! that was so FANTASTIC!

Warm, healing wishes to all......
scool
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.

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