I know how you feel. my daughter is now almost 18. Was diagnosed at 10. it has been a long ride, but things have worked out for us, after much trail and error. There are many options out there. Every...
dawinner, I see no one mentioned Enteral Nutrition, and you are trying to stay away from side effects of Remicade. The same day the GI was telling me we had to place my daughter on Remicade, that...
Thank you very much! Her stones dis not show up on the xray as the did on the ultra sounf, so I guess they are uric acid, not calcium. She's getting a Litholink lab, so I guess that will give us...
My daughter did total enteral nutrition for 6 weeks, Then we incorporated food slowly. She supplements with elemental formula, and eats al her meals regualarly. I did cut back on complex carbs,...
From all the research I've done, it depends on the weight of the pacient, plus the charge for the infusion in the site. Some sites are cheaper than others... depending on the state and the actual...
We are doing VSL #3. It has clinical trails to back it's eficiency....
How old is your daughter?...
Cata had a renal colic yesterday and the ultrasound showed two rather big kidney stones. GI sais Crohn's pacients are prone to kidney stones. Urologist sais she could be taking too much calcium with...
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...
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...
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?...
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...
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...
We live in Maimi, but Cata's always inside, she loves the theater I'll check the D in her next lab work. Thanks!!!...
It's always so good to be in this forum. You are all very knowledgeable. Thanks....
Although defined as medical food, the insurance rejected our request for coverage. We even sent the labs to prove the stuff was working, along with the medical necessity letter from the GI. Any great...
Hi stayingpositive, I'm sorry I was "disconnected" and didn't see ur post earlier. I am the Mom of a 12 year old. The best thing we have done to get her in remission is ENTERAL NUTRITION. This is not...
Hi Pa'a's_mom, I am so sorry to hear you had to join us because of your young child, but you have come to a good place. I am a strong believer enteral nutrition is the way to go, specially with kids,...
Stay hear, post as often as you like... this is our extended CD family and friends.... you will get a lot of love... I admire your strength....
She had been flaring since june (2nd. flare), with 7 to 10++ BM a day, pure water, bad cramps during and after food, with any food, gas, bloating, very low energy, muscle pain, head aches. Prednisone...
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Wow! So good to hear! Please keep posting your progress....
Good news! My daughter Cata is only 12 days away from ending the total enteral nutrition... and she is doing great. During the past weeks I have been reading, but could not find info on what foods to...
Hi there! Sorry to hear Meg is still loosing weight. Did you get the samples for Splash E028? They taste like fruit juice and pack 237 cal. per tiny carton. Cata likes them, and I am planning on...
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medchrt1, Modulen is a Nestle product but it is NOT available in the US. If you go to the Nestle site, you will see you need to choose your country, and then you can see what is available. The Nestle...
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)....
Writer, thanks, this is what I was thinking too. Escalador, I did want to try Modulen, but it is not available in the US. It did strike me as interesting to read it was made for Crohn's specifically....
Hi Writer, yes, I have considered enteral as supplemental. I am not sure what is better. I am very attracted by the possibility of a 2 year diet that will give her the results I read SCD brings...
Good for you! It's great! It's doing wonders for my daughter. I agree with Writer that the taste is very important. After trying many different ones, my daughter has settled on the ones made by...
Hi Tnvounteer, My 12 year old started with Crohn's on 5/07, and was finally diagnosed on 10/07. She is 12 years old now. She also has the disease in all the digestive track, even on her upper lip....
Hi! Welcome! I am sorry you are not feeling well. My 12 year old daughter is on enteral nutrition. It stopped the flare up in its track in less than a week. You might want to talk about it with your...
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...
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...
Hi Jackie, have you tried total enteral nutrition? My 12 year old daughter is on it now and it is working wonders. I understand not many try it, but if you have not, let me know and I can tell you...
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,...
From what I read in "Beat Crohn's! Getting to Remission with Enteral Nutrition", there are 3 kinds of formulas you can use: *Elemental: formulas containing amino acids, the most basic building blocks...
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....
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...
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...
Moobydoo, one more thing, what did your GI say about Absorb Plus?...
Hi Moobydoo! Nice to hear form you. did you get the samples yet? Cata is tolerating the Peptamen, vanilla!!!! /community/emoticons/smilewinkgrin.gif I made it into a slushy and she is slowly drinking...
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...
Moobydoo, thanks for the empathy! Cata is not loosing weight now. In the past flare she lost about[b] 15% of her weight. She responded positively to Prednisone and 6MP, but they are not working now....
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?...
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....
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...
Thanks again to everyone. I am on my way... Less desperate, more knowledgeable... Cata read the posts last night and was very moved. thanks...
When you say NO MILK, does this include Lactaid milk, or is Lactaid OK? (Sorry, did not get the book yet.)...
This is all amazing information. I will start "digesting" it all. I want to thank you all for being there and being so generous with your abundant knowledge. I'll keep you posted about Cata's...