I HAVE A 3 YEAR OLD WHO HAS GIVEN THE LIKELY DIAGNOSIS OF CROHNS DISEASE

My daughter has has blood in her stool off and on as well as seemingly constant diarrhea for as long as I can remember and although it has been brought up to her pediatrician it was dismissed as no big deal.  After I kept asking she finally got an abdomal xray which I was told she had inpacted stool and we just needed to change her diet. about 2 months ago the blood in her stool started to increase to actually being intertwined in her stool as well as dripping from her bottom.  I then damanded something be done and was referred to a Pediatric GI who gave her a colonoscopy and concluded that she had mild inflamation probably caused by a milk allergy.  A few day later she got what seemed to be the stomach flu and with that an extreme increase in blood in her stool.  She was passed around from doctor to er to eventually heading to the hospital where she had the colonoscopy done.  It turned out she had a bacterial infection but while investigating that this amazing doctor, the only one who put her history and her being sick together, found her whole intestines were inflamed when her colon would be the only thing inflamed from the diarrhea from the infection.  We are waiting on final test results to conclude if she has Crohns Disease or Inflamatory Bowel Disease.  She is currently on VSL #3 probiotic, a low sugar diet, and no dairy (or as little as possible).  Her bowel movements are still irregular with occasional blood so I'm trying to do everything I can to get this under control but it seems as though everything I read keeps contradicting itself.  The doctor is wanting to put her on prednisone tommorow but can she have a reaction to it since she is so young and her belly is obviously still sensitive.  So I guess I'm just looking for advice on what to expect as we go along and what can I do that has worked for others.  Also does anyone have small children that are dealing with this?  Thank u in advance for any kind of advice or guidance because it is truly an awful feeling to not be able to help your child.

Awww I'm so sorry. (((hugs)))

So sorry you are dealing with this in such a young child. I know the helplessness a parent feels when their child is ill and mommy can't kiss the boo-boo and make it feel better. I have a chronically ill daughter who is in her late 30's and been through so much (not Chrohn's) and my heart aches for her.

My advice is to find a GI you like and trust and let him guide you through decisions regarding meds, tests, etc. Prednisone is commonly prescribed to get the inflammation under control. And, in my experience (I've had Chrohn's since I was very young, but wasn't diagnosed till I was 19) prednisone worked well, even though the side effects are not pleasant.

If you need any help or just need to vent, you are in the right place. There are many caring and kind people here who truly understand the emotions and frustrations of having this disease and can offer advice or just lend an ear.

Sending my prayers and hugs to your daughter and you.
Potty Pooper

Probiotics, no dairy, no sugar, all sound like an excellent start. Prednisone can be very helpful for the little ones, in short term lower doses. Make sure she takes it with breakfast.

The only other things I would recommend are giving her a very natural diet (no processed food) and maybe even try a gluten free or wheat free diet for a while, in addition to the no dairy and no sugar.

Give her lots of healthy food and natural food and low acidic fruits and veggies and preferably mushy/soft food too. You should probably cook veggies and some fruits very well, and use a little honey and olive oil or real butter for flavour.

If you get desperate, a lot of moms put their kids on the Specific Carbohydrate Diet or the Maker's Diet or both. Kids usually get some relief with these too.

I hope your child feels better soon.

Best wishes.

I have a 10 yr. old girl who was diagnosed with this last year at age 9.  First let me say, I'm so sorry you and your child are going through this. It's truly scary when you don't know what to do next, or how to help your innocent child. I've felt that same way. 

As for what to do, I would highly highly agree with those who have recommended that you read "Breaking the Vicious Cycle" by Elaine Gottschall.  This book may be a strong first step toward healing and understanding.  In our case, my daughter refuses to eat the recommended foods and so we went the medicine route. She is doing much much better a year later and has gone back to life as normal (most of the time), except for the fact that she now has daily meds to take. We did start her with prednisone, which had her gain about 20 lbs. and blow up like a balloon, but most of the swelling and about 10 lbs of the gained weight dropped off within months of stopping the medication.  Personally, I'm still hoping that when she matures she'll be more willing to try the Specific Carbohydrate Diet discussed in the book as I do believe it would promote better health and less Crohn's complications.  Perhaps since your child is only 3, you'll be able to manage her diet and change it quite easily.

Thank goodness you finally found a doctor to recognize what is happening to your poor baby! 

So sorry that you have to be here. The following is also a great forum for support especially for Parents of Young IBDers:

www.dragonpack.com/ibdsupport/parents/

OH...and we all forgot to mention this diet, help, recipes, etc. are also detailed on the website www.pecanbread.com.  It's a great site. Personally, I bought a Yogourmet yogurt maker and I do make yogurt even tho my child is not on the diet. Yogurt has many trillions of probiotics as compared to a packaged, capsulized probiotic.  If your child will eat it, the yogurt option is way better than any bottled probiotic IMHO. 

Thank u all again.  I am going to get right on those books and reciepes tommorow.  I tried to sign on that dragonpak website but I can't see the security word in the registration form. :(  Ill try again later.

onthecan:  Your message had me balling like a baby.  I seem to be the only one holding it together for my little girl because I don't want her to be scared.  My husband doesn't even like to talk about because he just wants to cry and the rest of the family seems to get frusterated and cry to me because they are worried and they don't think I'm giving direct answers.  The truth is though I am giving them all the information I do know it's just not clear for me either.  I have an 19 month old son and am due anytime with our second daughter which only gives me more anxiety because I don't want to have to stay in the hospital to recover with my c-section while my daughter is going through this.  Your post made me cry because sometimes when I have to be strong and almost handle all this on my own to protect her... dispite me getting torn up inside I know now that it is helping her.  Even though I feel so helpless in "fixing" her I guess I am doing something for her that does help and mean something.  Thank you.  I am doing all I can to be knowledgeble and understanding for what she is going through now and for what to expect in the future.  Sounds like you have a wonderful mom because I have that dedication to my babies also and sometimes it can be extremely rough and tiring but it's amazing the strength you get just from the love you have for your child.   :)  Even if this disease is not something you can avoid or change it sounds like there is a way to make it tolerable for her and I am so thankful to have found this website with all this support and understanding.  Thank u again and I wish good health for you!

BSMOM - Oh, please don't cry!  Stay strong and do what needs to be done to help your daughter feel better.  Things WILL get better and she can lead a normal productive life with Crohn's.  As my daughter's doctor says to us regularly (which always makes us feel better)... "Crohn's shouldn't control you or your life.  We will help your daughter manage this disease so that she can live a normal happy life like everyone else." So far so good for us. Stay positive, it helps!

PS. Others here have found great help and healing by doing an elemental (liquid) diet.  Try looking into an option called EO28 Splash for children.  Some put their kids strictly on this liquid diet until remission of symptoms sets in...then reintroduce foods slowly. Others use it as a supplement to food.  You will find it if you Google it.  Good luck!  (My daughter drinks ENSURE regularly to keep weight on and for nutritional purposes...but only like a bottle to 1/2 bottle of it per day.)