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Hello, my son was diagnosed a year ago and we have been unable to find a cocktail of meds that work.  He's been on steroids pretty much that whole time and as soon as the steroid dose goes low, the diarrhea and bleeding come back.  He was on pentasa, then 6mp.  Now, he is on 6mp, apriso, and prednisolone.  The prednisolone doesn't seem to be helping anymore; I think he's immune to the effects now.  Anyone else having this problem?  What has worked for you??  We are very worried.

 Reply posted for Jennyd73.

We decided to try remicade since no other medicine worked.  He's had 2 treatments and so far there is no more blood but he's still going to the bathroom like 6 times a day, especially right after eating.  The remicade makes him super tired and it has been very hard to see a very active boy become so tired he has to take a break after walking up the stairs. We are going to keep taking it and see how it works...

 Reply posted for Jennyd73.

My son has UC since the age of 3 and now is 7. We did the 6mp, Pentasa and steriods and finally went with Remicade after 2 years. Remciade has been wonderful and he is gaining weight and thriving.  The potential side effects are scary, but so are all the drugs that go along with these diseases! I wanted to try remicade before any type of surgery. Humira is the next drug we will try if remicade stops working. I wish you and your child the best! My thoughts are with you! -Wendy

 Reply posted for Jennyd73.

After suffering from UC for decades i have gone into remission/cured after undergoing Fecal Transplant therapy.  Please check out my post under the Treatments section of the Forum.  The initial scientific findings are compelling.  There may be hope for your boy.  

Good Luck,

Tucker

 Reply posted for Jennyd73.

Good news, your son is eight so isn't quite as stubborn as he would be once he gets older.  I say this because what I am finding through my research and experiments on myself, diet does a lot more to deal with the symptoms than meds.  I am on, by comparison to what I see in these forums, light meds.  I used the meds for quite a while with no change in results.  What I am finding is that, starting with a food diary, I was able to see how much of what foods I was consuming.  I could also go back to those foods and see what was in them.  I found that I consumed mass quantities of milk products, I like cheese.  I also found that a lot of the products I was or am consuming have a lot of glutton in them.  I cut back on both of these and started to cook from scratch or my wife did, depends on the day, and I have started to feel better.  I still maintain a food diary because I am aware as we age, our bodies change but I am not as strict with it as I was.  The last thing I will add is that if the whole family makes the change, it makes it easier for the kid to change and it increases the health of the family.

 Reply posted for Jennyd73.

Hello.  I am the mother of a 16 year old basketball player.  She was diagnosed with Crohns last September.  It was rough needless to say and we had never felt so helpless as parents until then.  I would like to help your son.  Our daughter has NOT been on prednisone or anything other than Mesalamine....she is on natural supplements.....you can read her story under Personal Stories on this website....it really is quite amazing.  In addition, recently another crohns patient tried the natural supplement and her results were amazing too.....coincidence....dont think so...if you are open to natural ways of fighting this disease then check out our daughter's story....it is under Manzos....starts out....My 15 year old daughter.....I would love to help you too.  One more thing I have to share is the crohns patient's son...who I have never met....got on the phone the other day and thanked me for making his mommy feel better.  Pretty cool story.  I hope to hear from you.  :o)

What is your son's diet like?    We had only thought we were doing everything right when our daughter  was diagnosed.   Turns out we were consuming way too much fiber.   Our family had been eating a high fiber/mostly organic/low fat diet.   Who thought that was bad?  It took numerous visits to our pedi gi and visits with their nutritionist to get my daughter on the right track.  

Things started to fall into place......she finally started to thrive.  Gaining weight and growing tall.   Smaller / more frequent meals helped her.   

One of the best things you should keep in mind when he gets a little older (I think you need to be 9 or 10) is Camp Oasis.   You can learn more in the Kids/teens tab to the left.   It's important for our special kids to know they aren't alone and plenty of kids are just like them!    Get him involved before he becomes a strongly opinionated teen.....then it may be too late!  

I just read a book "Controlling Crohns Disease the Natural Way".  Not that I'm saying it is necessary, especially for such a young child with the dietary challenges, but it really gave some good insight and provided a story of success.  I am actually now hooked on Miso Soup (mmmmmm, soo good)! 

How is his bloodwork?   Are his #;s all over the place or stable?   Is the bleeding constant, heavy, bright, dark?    The doc can tell a lot by that alone.  

Lizzies Mom