Catasmom considering enteral nutrition for my 12 year old. Best flavored elemental formula???

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Catasmom
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Date Joined Sep 2009
Total Posts : 54
   Posted 10/9/2009 6:37 PM (GMT -7)   
Hi Forum people,
I have been reading you a lot, but being so new there is not much I could say. Learnt a lot, though.
 
Cata got a bit better for a few days, but is going through a bad flare again. Her GI and I have talked about enteral nutrition. She remcommended Peptamen Junior or regular or Vital Junior.
I hear they taste horrible. So the alternative is a gastronasal tube if Cata will not drink them.
 
Soooooo..... here is my question: anyboby tried an elemental formula that tastes decent? Any Mom/Dad out there who tried this with their child?
 
I read a few postings, and Writer seems to be the expert!
Any advice will be welcome.
 
By the way, I am reading "Beat Crohn's! Getting to remission with enteral nutrition" by Margaret Oppenheimer, published June 15, 2009
 


Mom of a 12 year old girl diagnosed on Oct. 2007.
Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/

Post Edited (Catasmom) : 10/9/2009 7:42:37 PM (GMT-6)


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 10/9/2009 7:16 PM (GMT -7)   
not so sure about the horrible taste of the nestle brand. I recall it was ok.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/9/2009 7:28 PM (GMT -7)   
I think she won't find either of these too bad. They both come in flavors for kids, vanilla and strawberry for the Vital Jr., and vanilla, strawberry, and chocolate for the Peptamen Jr. (I think the regular Peptamen is only in vanilla.) Have you given the companies a call? They will often supply a few samples so that your child can taste them and see what she likes best. I hope this works really well for Cata!

Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 10/10/2009 4:35 AM (GMT -7)   
Thank you! It is a great idea to get samples, I only have Peptamen in strawberry and vanilla, my Gi supplied those. I'll call.
Mom of a 12 year old girl diagnosed on Oct. 2007.
Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 10/10/2009 5:20 AM (GMT -7)   
Catasmom - I'm sorry to hear that Cata is flaring so badly!  It seems we are on the same path as I just literally spoke to my daughter's doctor about this same thing (enteral nutrition, tube feeding) yesterday morning. Is Cata losing weight? My daughter has lost a few lbs.  I am awaiting my ordered samples of Absorb Plus. I will let you know how they taste (to her).
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/10/2009 8:27 AM (GMT -7)   

    Tried the first can of Peptamen Vanilla. Out of the can she did not like it, but GI told me I could make a smoothie with some ice. It was much better. BUT it gave her cramps... any idea why?


    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/10/2009 8:34 AM (GMT -7)   

    Moobydoo, thanks for the empathy!

    Cata is not loosing weight now. In the past flare she lost about 15% of her weight. She responded positively to Prednisone and 6MP, but they are not working now. She has been flaring since June, and it has been a big struggle to keep her eating and growing. Her diet is not balanced, for she has to be on a low fiber, bland diet. The GI accepted my suggestion of enteral nutrition (by mouth or tube, depending if she can handle the 7 cans she needs a day), so we are tasting this weekend. I am hoping this works, because the next thing is Remicade (minus 6MP, and prednisone), and I don't want to go that way.

    So I just ordered the same formula you suggested, Cata seemed to like the comment of a 16 year old about the product on the site, so she might be more willing to go with this one. We'll see. I am crossing my fingers.

    What about your child?


    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    medchrt1
    Veteran Member


    Date Joined Sep 2005
    Total Posts : 517
       Posted 10/10/2009 8:37 AM (GMT -7)   
    thats important question. As you know it is made from whey, so this is milk related. I am not fond of anything in powder form or made from milk, at least not on an empty stomach as the amino acids absorb quickly, perhaps too quickly.

    Writer
    Regular Member


    Date Joined Aug 2006
    Total Posts : 443
       Posted 10/10/2009 9:24 AM (GMT -7)   
    Just a caution about Absorb Plus. I've had a look at the website. I would hesitate to recommend it for exclusive use. First, the FAQs say that it contains no iron. Iron is a necessary nutrient, and all standard enteral nutrition products contain it. I also note that the product contains no fat. Having at least some fat in our diet is absolutely essential, so you would have to add some oil or other fat to the product, and it would be difficult to tell how much would be necessary for the needs of your child. I would stick to the Vital Jr. or the Peptamen. With those, you'll know shall be getting the nutritional requirements appropriate to her age and medical condition.

    Regarding the cramps when taking the Peptamen, I suspect it would help if she drank it more slowly. Because it is calorie-dense, her gut needs a little extra time to absorb it. Just a thought.

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/10/2009 12:50 PM (GMT -7)   
    Tow cans down, plus the bland food.
     
    Writer, thanks for the advice. What do you think of the making a slushy with it? I am adding ice. Is it OK? She tolerated it much better that way. And she drank it slowly as you suggested... no cramps this time.
     
    Are there any formulas not based on milk or other animal product?
     
    Thanks!!!!!!!
     
     


    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/10/2009 12:53 PM (GMT -7)   
    The "no fat" issue is addressed in the booklets you will receive from Absorb Plus. They recommend adding cold pressed flax oil.  As for the milk issue, Absorb Plus is 99.8% lactose free and has no casein, according to what I received online from them.  I'm not sure about the iron.
     
    Megan is having a good day. No pain or cramping today.  Outside playing. But definitely a decreased appetite lately. She managed to swallow the entocort today, three pills = 9 mg.  Have you tried that for Cata?
     
    How about the SCD?  Have you read the book by Elaine Gottschall?
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/10/2009 3:02 PM (GMT -7)   

    Hi Moobydoo!

    Nice to hear form you. did you get the samples yet?

    Cata is tolerating the Peptamen, vanilla!!!! smilewinkgrin

     I made it into a slushy and she is slowly drinking her 3rd. can today! Yupiiiiii!
     
    I am still looking for alternatives to taste new stuff. How does your sample taste?
     
    I will show the site of the Absorb Plus to the Gi on Monday and see what she thinks.
     
    I read part of the SCD, and the legal and ilegal list. I also made the soup to get started, but Cata did not like it at all.  Why are you wondering? What's on your mind?
     
    Then I also read the Maker's Diet. It had no diet for flaring that I could find in the book, but I started Cata on the probiotics it mentions, and she likes them. I mix them with a Probiotic youghurt.
     
    And now I'm on this book about enteral nutrition. It is the first one I have the backing of the GI and the dietitian. And Cata seems to be on board for now. We are even talking about a gastronasal tube. I hope this lasts.
     
     
    I'm glad Megan is having a good day.  When did you start with entocort?
     



    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/

    Post Edited (Catasmom) : 10/10/2009 4:06:48 PM (GMT-6)


    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/10/2009 3:04 PM (GMT -7)   
    Moobydoo, one more thing, what did your GI say about Absorb Plus?

    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    Writer
    Regular Member


    Date Joined Aug 2006
    Total Posts : 443
       Posted 10/11/2009 12:56 PM (GMT -7)   
    Catasmom,

    Adding ice to make a slushy is fine. Glad there were no cramps this go around. Hope Cata starts feeling better!

    Regarding formulas made without animal products, basically no. Even with amino acid-based formulas, to synthesize some of the amino acids, you start with animal protein. Some formulas include a mix of soy-derived and milk-derived proteins but I don't know of any all-soy formulas suitable for exclusive use.

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/13/2009 8:36 AM (GMT -7)   
    We are starting Enteral Nutrition!

    The results over the weekend were amazing, with 50% decrease in BM and no pain. Cata was having the formula (3 cans on saturday and 4 on sunday) + bland diet.

    We received the Peptamen Jr. today and we are starting tonight or tomorrow.
    morning.

    My HMO will not cover the cost of formula (24 cans are $169.99, and she needs 7 a day). Has anybody done this and appealed to the HMO to cover the cost of formula? I read that if she is doing it instead of medication or to avoid starting on a new med (Remicade in this case) they should cover it. Any experience?

    Thanks to all that answered our questions! Thanks Writer specially, your expertise is invaluable.
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/13/2009 9:10 AM (GMT -7)   
    That's fantastic Catasmom! Glad to hear she is feeling better.  (Entecort is kicking in her too, after three days only...first formed stool in forever last night. And MUCH less tummy discomfort.)
     
    But OH MY GOSH! Can't believe the cost of that!!! What if your doctor were to write the Peptamen as a prescription and you were to have your pharmacy order it for you. Would HMO cover it then?
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • jujub
    Forum Moderator


    Date Joined Mar 2003
    Total Posts : 10392
       Posted 10/13/2009 9:16 AM (GMT -7)   
    Just a suggestion. Sometimes liquid diet replacements like this are better accepted if you freeze them, like "ice cream." It also offers a bit of a change in texture that sometimes helps.
    Judy
    Co-moderator, Ulcerative Colitis
     
    Diagnosed in 2001, finally in remission since March 2006.
    Mesalamine is not my friend and steroids are from the devil. Remicade has been my miracle drug.


    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/13/2009 9:29 AM (GMT -7)   
    Hey that's a great idea Judy! Wonder if Absorb Plus will freeze like that?  Would you still use ice and freeze it as a slushie, or just mix w/ water and then freeze?  This might be a way to get my little one to try the absorb plus.
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • Writer
    Regular Member


    Date Joined Aug 2006
    Total Posts : 443
       Posted 10/13/2009 6:35 PM (GMT -7)   
    Catasmom,

    That's great news about the improvement! Not great news about the HMO. By all means appeal. You ought to be able to win this one. Try and find out why they denied coverage. That will help you build your case. Some points that may be relevant to highlight: this is a primary treatment for her disease, not just a nutritional supplement; its efficacy is supported by randomized, controlled clinical trials indexed in Medline; your backup treatment (Remicade) would cost much more so they would do better to pay for the formula; if they will only cover it if she takes it through a tube, point out that having her drink the formula is much cheaper for them because it eliminates the cost of a pump, etc. You will probably need to have your doctor write a letter to them justifying the choice of treatment.

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/15/2009 8:54 AM (GMT -7)   
    Thanks for the suggestions!
    I'll try the ice cream!

    Writer: I have a question about BMs: are they supposed to be liquid (Cata is not having any solids)
    and might they become more frequent now that she is on exclusive enteral nutrition?

    We are on our second day of total enteral nutrition!
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    EMom
    Veteran Member


    Date Joined Aug 2007
    Total Posts : 990
       Posted 10/15/2009 8:58 AM (GMT -7)   
    I am keeping your daughter in my prayers! I sure hope this works for her!

    Writer
    Regular Member


    Date Joined Aug 2006
    Total Posts : 443
       Posted 10/15/2009 9:57 AM (GMT -7)   
     Catasmom,

    It varies from person to person regarding both solid vs. liquid and frequency of BMs, so you'll have to wait and see. Good luck with your first week!

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 10/15/2009 10:10 AM (GMT -7)   
    Thank you for the help, and the prayers!
    Everything is so new, and I get a little anxious. You all help a lot!!!
    I hope one day I can be an expert and help others in need.
    Mom of a 12 year old girl diagnosed on Oct. 2007.
    Prednisone/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/ Bland diet/


    Sami'sMom
    Regular Member


    Date Joined Oct 2009
    Total Posts : 32
       Posted 10/15/2009 10:53 AM (GMT -7)   
    I just have a question. What's the difference between these eternal nutrition drinks and drinks like Ensure or Boost? If there is something different I can try for Sami that she may drink that would be great. She will only take the Ensure or Boost if I make them into pudding, ice cream or brownies.
     
    I hope your daughter starts to feel better soon Catasmom.
    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


    Writer
    Regular Member


    Date Joined Aug 2006
    Total Posts : 443
       Posted 10/15/2009 1:31 PM (GMT -7)   
    Ensure and Boost are also enteral nutrition products. I've tried a number of the products on the market, and they all taste a bit different, so, for instance, sometimes a child will like the vanilla flavor of one brand but not the vanilla flavor of another. You could try experimenting with different brands and asking the different companies to send you samples. Maybe try one of the types that is more juice-like in texture rather than milkshake-like? Perhaps she would like that better.
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