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My daughter was just diagnosed with Crohn's last week, and, of course I am full of questions.

We started her on prednisolone the day of her diagnosis and the dr. said she will be on this for 6 weeks.  We go in next week for a two week apppointment at which dr. said we'd also start MP-6 for maintenance.  My questions are:

1. Should we go with this first dr's recommendations for medication or should we seek a 2nd opinion?  Mayo Clinic in Rochester is a short drive away so we could easily go there.

2. What are the risks of getting through the predinisolone and then trying diet modification and homeopathic treatment first instead of jumping into a lifetime of medications? Anyone tried this route first?

3. My daughter's main symptoms started with many mouth sores/cannker sores that weren't healing.  She also had a funny feeling in her throat which I'm now attributing to some sores in her mouth (scoping showed some in her esophagas).  Since the scoping and diagnosis we cannot get her to eat anything besides yogurt, ice cream, Boost drinks, and broth.  The sores in her mouth are gone and her stomach feels fine and no diarrhea.  I finally got her to tell me that she's scared food will get stuck in her throat.  She seems terrified and is actually not wanting to eat at all.  Anyone have anything like this happen?  We're thinking she may need some type of anti-anxiety meds to calm her down, but again I hate pumping my 10 year old full of more meds!  Any insight would be appreciated.

Thank you in advance for your replies!

 Reply posted for davidjakob.

Your post caught my eye--my almost 15 yo son is also a wrestler, and baseball player.   He was diagnosed 2+ years ago with Crohn's and progressed from 6-MP to remicade.  It took a few months on remicade for him to gain weight, then about 6 months to start getting back height, so it didn't happen overnight.  But now he feels great, works out, had a good year in both sports--looks like a "normal" athlete, you would never know he had IBD.  I wish the same for you--tell your son once his disease is controlled things will go fine with sports.  Be aggressive in getting him there.  We probably waited too long to move to remicade, though I guess no harm done at this point.

 Reply posted for momofk.

Thanks for the words of encouragement from all of you.  So glad to hear that Lizzie has been able to keep up with gymnastics.  My daughter started back last week.

An update on treatment.  We have decided to try a gluten free/lactose free diet with ASL3 probiotics and OmegaBrite as supplements.  For now we are going to see if this can keep it under control without drugs.  Since this was her first flare-up we are praying that this course of action will work. 

My daughter's TPMT level is low so the MP6 makes us nervous.  Our ped. GI was okay with us trying this route first.  If we do need to try drugs we may opt for mealamine (5ASA) first even though it works more in the colon and that is not where our daughter had most of her issues. 

Would love to hear feedback from anyone regarding our treatment plan and if they've had success trying something similar when Crohn's was caught early. 

We keep praying for all of those affected by these conditions. 

 Reply posted for momofk.

My daughter is a gymnast too.  Fret not, your daughter should be able to pick up where she left off once her gut is more controlled.  

Our doc had us consult w/nutritionist on several occassions.  Once was just to learn how to "boost" calories.  My daughter's system was working over-drive and 2,000 calories /day was simply maintaining her size.  We had to work add'l calories daily and now she seems to be having a growth sprout...(thank goodness).

I enjoy cooking/baking, so we rarely eat out and mostly enjoy all natural,organic when I can get it wholesome good food.   We follow a low fiber / low residue diet to try alleviating any gut upset, and have learned over the years what works and what simply doesn't.   It took a lot of trial and error, but she can now tell what she can/can't have. 

Stay strong and know there is a light at the end of the tunnel.....you'll be taxi-ing to the gym soon.

Lizzies Mom

 Reply posted for wildcat.

 i am so happy to hear how well your son is doing. My son was just diagnosed at 12  and his favorite sport is wrestling! I know he is nervous that this disease will affect his ability to be competitive. Any words of wisdom?

 Reply posted for momofk.

My son was 14 when he was dx. He was an athlete competing in wrestling and olympic weight lifting. I would say over the past 8 years there were very few events he was not able to compete in due to illiness. He might not have always been at his "best" but I can only remember 2 times where he was too  sick. He was very lucky to have a long period of remission with few flares that allowed him to live a very active life. His doctor always said "you can do anything you want with crohn's- just maybe not always at that exact moment you want to!"

I do agree with the other posters who suggest taking everything in and then ultimately going with your gut feeling and what you believe is in the best interest of your daughter. No two kids are alike, nor are their disease courses. You will see that what works for one child does not for someone else. All you can do is make sure she is in the best hands and then follow your heart!

 Reply posted for momofk.

Thank you for all of your kind and informative responses.  I so appreciate having this forum as a place to throw out some questions.  My heart goes out to all of you too since I know you've been where we are now. 

Today we are going in for an esophogram to make sure that there isn't bruising or something else causing her to not swallow solid foods.  We really think it is in her head and just anxiety/fear, BUT as a mom I don't want to leave something unchecked if there could be a physical explanation for this. 

The pediatric GI we saw said there is "no medical research" about diet, so she didn't suggest any diet modifications.  However, we only talked with her after the scoping and haven't had our two week follow up where we'll be doing a lot of talking.  I will throw out a lot of questions to her then to see if she is one-track minded with medications or if she has some flexibility to think of other meds/diets/etc.. 

Do you think we'll be safe just staying on the predisolone and getting it under control and waiting with the 6-MP until we see a second doctor (if that is the route we take)?

One more question, in your experiences how many of you have active kids in sports or know other kids with Crohn's that participate in sports?  My daughter is hoping to continue gymnastics and move to competing - practices are 3 hours a day 3 days a week.  We obviously are waiting for her to get better and put on some weight before going back to practice.

 Reply posted for momofk.

We have all been there, newly diagnosed with a ton of questions.  

Our family has been dealing for six years and we have had our share of ups and downs.   Over the time, I have learned to trust my own gut - "motherly intuition".   I can sit here typing you today and say I left no stone unturned.   I wanted nothing more than for another doc to look me in the eye and say "she doesn't have Crohns", she has a virus.   We consulted two other specialists and they were in complete agreement....no virus, but a four year old with Crohns.  

Diet modification seems to be a topic that docs can't wrap their heads around.   Some say modify to a low fiber / low residue diet, while others claim diet doesn't play a role.   Our pedi gi also has a degree in nutrition and introduced a low fiber / low residue diet.   It took a lot of work, but after reading labels, taking notes on my daughter's reactions, we are now able to navigate pretty well w/food.  Many people have had tremendous success w/the SCD diet, others w/vegan, and many, many others.  It is a matter of finding what works for your child and sticking with it.  We try to eat organic whenever possible, always have "safe" snacks on hand, and eating smaller (more frequent) meals works best for my little one....she doesn't feel overwhelmed. 

My best advice to you is stay the course, things may seem very overwhelming (I know, such an understatement), but they will get better.  This site is an excellent source of ideas/opinions/ information.

Lizzies Mom

 Reply posted for momofk.

Hi sorry to hear the news! I have a 2yr who was diagonosed w/Crohn's Colits at the age of 16th mths. It has been quiet a challange. I got several opinon's  before anything was started. My son did not respond to any of the 5-ASA's. The only meds that seem to be working are Flagyl and the Predinone. Now he has stop eating solid foods! Oh by the way Diary is not good for people who have Crohn's. My son just happens to be allergic to Diary. And he also a picky eater! So I am at my wits end! He just started drinking the Boost Breeze, but I have to camoflouge it with Gatorade or Pedilyte which he thinks that is juice, because he has never had juice, due to all of the sugar! This is a nightmare! His inital symptoms were bloddy diarrhea. Which I would change him 5-10 times a day! Then it was diaper rash all the time. It has slow down tremendously. But now he's not eating,nor gaining weight! ;}(

 Reply posted for momofk.

Okay one more thing.  I would talk to the doctor about the anxiety and whether or not counseling for a few weeks would be helpful.  You know her best but hopefully you can get through it without more meds.

 Reply posted for momofk.

I remember this roller coaster all too well.  My daughter is seven and was diagnosed with Crohn's June 2009.  She had mouth sores, esophageal ulcers, ulcers in the bowel and sores on her bottom.  It is a heartbreaking diagnosis and I know you are totally overwhelmed.