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My 9 yr old daughter was dx with "mild crohns." They put her on Pentasa but insurance wouldn't pay for it so they switched her to Apriso. We started her on it but it seems to make her feel worse!! Before we started it she was starting to feel like her old self again. No pain, happy, playing.... Then we started it and she went down hill. Nausea and cramping again. I asked the dr. if she really needs it if she's better without it and he said yes and if it doesn't work he'll put her on a steriod and Apriso. I just don't understand giving her a med that she feels better without! HELP!!!

 Reply posted for jerusha.

My GI doc just came back from a conference where several studies were presented and discussed that suggested that pentasa and asacol have little to no effect on Crohn's disease. I don't know what the specifics are but the findings made enough of an impression on him that, as far as I know, he has taken all of his patients off of pentasa and put them on 6MP or biotics. You might want to talk to her doctor about those choices.

 Reply posted for jenelnels.

This is to Jenel.  I'm new to the forum too.  My 2 kids (11 and 13) were diagnosed with crohns 1 and 2.5 years ago.  We first thought my daughter had celiac until further testing concluded crohns.  you mentioned about going gluten free.  After reading an unimaginable amout of material about the disease, I found out that most people with inflammatory disease can not digest gluten well.  I highly recommend you read the book called 'Stop the vicious Cycle'--there is a website for it.  Also visit the website called nomorecrohns.com  My daughter felt much better when she stayed away from anything wheat and other food with gluten.  

 Reply posted for lizzies mom.

Hi Everyone,

I am new to this forum and the title frustrated mom described me so I clicked on it. My 8-year old son was diagnosed with Crohn's Disease exactly one year ago. He was doing well and growing somewhat over the last year. I noticed he was getting stomach pains in the past few weeks so we had a blood test. His sed rate is back up to 55. We are going to the doctor on Monday, but I started to wonder about nutrition. I was considering gluten-free. How did you start it with your child and how did you deal with him/her not wanting to eat it? Tyler has become such a picky eater I can't get anything down him that's not a chicken nugget. Any advice would help as my husband also has Crohn's disease and he is actively fighting it right now too. 

Thanks!
Jenel

 Reply posted for carolina2.

Carolina2
   I would love to get in touch with you.  My son is similar in age.  We do elemental nutrition with a little bit of home cooked food.  I know he is getting all his nutrients in the formula.  We went gluten free, no preservatives or dyes, organic when we can, use a probiotic, chew real well.  He is growing like a weed.  He put back on 13lbs that he lost in 2.5 months.  Now he is just growing normal and showing good signs of maturation.  Incomplete nutrition can hold some kids back.  My son also prefers to drink his food.  If you'd like to keep in touch, send me your email.  
Thanks
Bethany

 Reply posted for carolina2.

Hi Carolina. So far we have cut out gluten, dairy and most sugar. She has been doing better. I'm not sure if I'd call it rmission cuz she still gets cramps every once in awhile and nauseas but she's not on the couch and is basically back to her normal self. She eats a lot of eggs and strawberries! Gluten free peanut butter and gluten free chips. Usually water only but we recently added a little apple juice. I cook everything plain will only salt. Turkey burger, chicken, lean beef and white rice for dinners. Very basic stuff so far. I'm scared to go back to eating gluten because I don't want to put her in pain again. Oh ya, almond milk as well but I've noticed on those days(I've made her smoothies with it too) she cramps. I read the book Breaking the Vicious Cycle and the SCD sounds great and I think it probably works but I could never get my daughter to eat like that this young. I really feel from everything I've read that carbs and sugar and very bad for their systems. Another thing I'm going to try is aloe. I keep reading about how much it helps to heal the intestines. U can add it to his smoothies. Yesterday we went to Starbucks and she had a soy vanilla bean frapaccino. She held it for about 10 minutes before she drank it cuz she was so scared. It was fine! No stomach problem at all. Full of sugar but probably ok as a treat. We've tried some sugarfree soy ice creams and she gets sick. I think it's the cream and all the artificial sweetners. It sure would be easier if there was one diet a crohnie had to follow. I hate the trial and error and trying to figure it out! Keep in touch and I hope your son continues to do great!!!

Hi,

My 11 yr old son was diagnosed last year, and I am also looking for  nutritious food ideas.    He is doing very well  and gaining weight now, but the first months were difficult.  His food choices are still limited and I worry about a balancing his diet.

What worked:  gluten free and dairy free (except yogurt) when he flares to help settle his system.  Now that he is feeling better, dairy is one of his staples:  milk, certain cheeses, lots of yogurt.   Yogurt never bothers him.

Protein:  dairy, scrambled eggs,  very mild ground low fat turkey sausage and  turkey bacon.

He can eat plain pasta, or boxed Mac n Cheese made with the powdered cheese - one of his few options at a restaurant..

I noticed that his energy and color is better with liquid nutritional supplement .  He couldn't tolerate the nutrition drinks until his system healed, but now has one a day.  He would rather drink food then eat solids since was he very young.  

He loves the fruit/vegetable juice blends but cannot tolerate pulp.   ( and no citrus). We have just started experimenting with juicing at home and he likes the fresh fruit  with sweet root veggies so far.   I  am taking it slow but hope to introduce juiced greens at some point.     
He can't keep down whole fruits and veggies, but juicing shows promise.  

Small meals with snacks, no late meals.   Lots of fluids: water, juice, decaf tea, milk.   He can eat the occasional sweet, but nothing too rich or tart.   No greasy,oily,fibrous foods.

I hope this sparks an idea, I would love to know what you are learning.    Regards

 Reply posted for jerusha.

I looked up the walk. It's Nov. 8th. I guess there's diff ones according to your area.

 Reply posted for jerusha.

Thank u so much for the info. How old is Lizzie? I wish they had a facebook type of thing for kids with crohns. I think it would be great for them to be able to talk and see they are not alone. I saw the camp and will def look into it next year. Peyton has a bit of separation anxiety from me so idk if she'd want to go although I think it would be amazing. Idk how u figured out Lizzie's triggers. It's so hard because I can give her one food and she gets nauseas but then the next day eats the same thing with no problem. I guess take away everything and add one thing at a time. Also, when is the walk??? I'd love to do it!!! I saw the half marathon but don't think I can do that. If it was a 5k I'd do it but 13 miles, not so sure!!! Thanks for responding and giving me your time!
PS maybe Lizzie and Peyton could email each other??

 Reply posted for jerusha.

There were several changes we made post dx.  We met with a nutritionist, which  provided us with a lot of recommendations. We started using a food diary; writing down everything eaten and how it was prepared. A helpful hint is also for your daughter to chew things more completely in her mouth, letting her teeth do more of the breakdown/work and less for her gut to do.  

We've also learned that smaller/more frequent meals help her feel better, her system doesn't get overwhelmed, and drinks given after meals. Our daughter was very small and underweight, dx w/ "failure to thrive" so it was key to get in as many calories in as possible.

We have tried gluten free / and lactose free but didn't see any difference really.  Each child is different and your daughter may be more sensitive - see how it goes, trial and error. 

Once we figured out Lizzie's triggers and she gained remission through diet and medication, things got increasingly easier. 

Look into sending her to Camp Oasis next year, she can meet some fellow crohnnie's and feel less alone.  We became active as a family and take part in CCFA's annual walk too.

 Reply posted for jerusha.

Thank you Lizzie's mom. It is so frustrating and hard to watch her suffer. Some days are better than others. Do any of you restrict your kid's diet? I have Peyton eating gluten free, dairy free and as little sugar as possible. Any food suggestions that have really helped?

 Reply posted for jerusha.

I hear your frustration and of course we as parents want what is best for our kids.  There a couple of things you can do.  First, begin the appeal process for coverage for the Pentasa.  It is ridiculous, but many times we have to fight for coverage. Then based on that turnout, talk w/her doc.  If the insurance co is still denying coverage, maybe her dr. can prescribe sulfasalazine, which is another 5-ASA level med and may be more agreeable. I know it is relatively inexpensive, my daughters been on it for years and yes, has been covered by insurance.

Unfortunately it may take a couple attempts before the dr. finds the right med that is both agreeable with your daughter and covered by insurance, don't get discouraged, stay the course and things will get better:)