My child has Crohn's

We are still feeling rather "new" to all of this. She was scoped, diagnosed and treated with predinisone which helped almost immediately.  She is currently taking Pentasa, along with omegas, probiotics (VSL #3 and a Custom Probiotics formula), Forvia multivitamins and calcium.  She "had" been doing well all summer up until about the last two or three weeks. Now she is just beginning a new school year and is experiencing pain and diarrhea and lots of gas.  What a horrible way to start a new grade.

Is there something I am missing?  I feel so helpless against this disease...like I am unable to help my own child feel better. Soooo frustrating.

Has anyone here tried probiotic enemas?

How about fecal transplantation?

This is a crappy thing to have to deal with and I sympathize with you given that you have a child with autism as well.  I too suspect this disease has something to do w/antibiotics.   My child was on sulfa based antibiotic for 2 yrs as a preventative because she was diagnosed very young (6 mo) with urinary reflux.  She then outgrew this.  This is only my two cents.

Anyway, the disease is not a death sentence and kids are resilient and can become whatever they want.  I would do some research on the Remicade.  Perhaps she might have some luck with this. 

On a side note, I research this disease constantly and believe there are tons of new medications down the pipeline.  There is even a potential cure for MS (another auto immune disorder) for which physicians believe might also work on Crohn's and other auto immune disorders.  The "cure" was found in mice when scientists fused two human cells together.  Because the cells come from the body, there is no foreign substance and no side effects.  I pray every day that there will be a cure.  Treatment for this condition (and others) has come a long way in a very few years. 

Please feel free to contact me, I would love to be in touch with another who has a child with this condition.  My daughter will be attending Camp Oasis this summer (thru CCFA) to meet other children like her.  God Bless and take care.

I'm in agreement with most of what curedcrohn's said, except:

Raw foods can be very hard for Crohnies to digest. In fact, as the SCD diet recommends, with active inflammation and especially strictures, it's often best to cook vegetables like carrots, broccoli, etc., until they are soft...otherwise, particles can become stuck or cause lacerations in inflamed intestinal tissue.

Furthermore, our bodies are often better able to digest cooked, rather than raw, foods. For instance, the vitamin A in carrots is more bioavailable when they are cooked -  also, cooked carrots should be served with fat added....olive oil, butter, etc...because vitamin A is fat-soluble, so the fat helps to absorb it.

My 13yo son ('m dad) was diagnosed about 3.5 years ago I wish I had started him on remicade right away.  It really does help.  This past summer at Camp Oasis the DR told me rem has changed everything.  Kids at camp rarely have pred because so many of them are doing great on rem. It makes my son feel a lot better, he looks forward to getting it.  Unfortunately his perianal fistualas haven't healed like we expected, and he actually gets rem every six vice four weeks.

Went to an EXTREMLEY informative IBD conference in Atlanta last month.  Mayo, Cinci Childrens, DR K or Emory...all the brains.  Learned alot..... here's what I took away:

Get this.....you know how many drugs are currently approved for use by the FDA for CD??????  ONE (remicade).  All the others that are used are not indicated specfically for CD.  And rem has only been around for 10ish years (don't quote me).  YOU READY FOR THE GOOD NEWS? (forgive my yelling moderators, I'm excited ) Right now there are 25 drugs in the pipeline (and close to coming out) which attack FIVE different aspects of CD (immuno, cellular, etc).  Plus, get this, they have ID'd something like 25 genetic markers for IBD.  One DR (DR K) said that in a few years he see's a time where they won't say you have CD,UC...but IBD 17, or IBD 5.  Then, they won't putz around with drug A...they'll jump to drug F which they will know is more effective against your particular strain (?) of IBD.  As he put it, you wouldn't go into a shoe store and see a pair you like and try it on....you'd measure your feet and limit your 'try on's' to shoes of your size.  I said all that to say this.... TIME IS A FRIEND!!!  With each passing day, new stuff is coming!

This next concept has literally taken me three years to grasp.  DON"T think long term.  If your child's treatment leads to a good quality of life...that's what you look for.  That's what the docs discussed.  Is she okay in school, have a social life, generally happy, able to keep a job.....you get the point.  That's my new mantra with my sainted wife when we get our thrice weekly teary-wet pillow parties.....our son is a great kid with friends.  He does well in school.  He wakes up smiling every morning despite his constant reminders on his bottom.  What else could a parent ask for.

Lastly, be your kids advocate.  We talked to every one of my son's teachers from the fifth grade up until now.  We laid out the deal, and he has a no questions asked hall pass.  He sits back by the door in all his class so he can slip out need be.

No way around it.....THIS SUX!  But you know, I told my wife on day one, if we hear Himalayan camel wee cured someones CD.....we'll pack our bags, study how to ID Himalayan camels against others, and build up a thirst for camwee.  That's what parents do.  To date, those miracles don't exist.  Hit is hard medically from the go and BIDE TIME.

Post Edited (Crohn's Kid :() : 9/12/2009 11:33:08 PM (GMT-6)

Thank you.  It took me awhile to get here.  I've always been a whimp when it comes to my kids....overly smoochy, hopping in bed with them in the morning and singing goofy songs to wake them up....lot's of kisses and hugs.

It's cliche', but true, I'd give my health, my pension, my home......all of it, to have a healthy son.  I fight the urge to be jealous of healthy friends of my son (hey, I'm human).

But at the end of the day it comes down to an old story I heard about a man who found himself in a dream standing in a big room of crosses (fill in the blank for Stars of David, etc).  He tried lifting several and couldn't.  Finally, when he found one he could lift he looked on the back and there was written his name.  Right then a voice could be heard and it said: "Those other crosses weren't yours to carry.  The one with your name was given to you because I knew you could carry it."

BIDE TIME.  Live life.  Hug, hug, hug.