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

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

 

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 - 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).

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?

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.

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?

Moobydoo, one more thing, what did your GI say about Absorb Plus?

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.

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.

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.

I am keeping your daughter in my prayers! I sure hope this works for her!

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.

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.