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Hi ,
I am new to this forum,my daughter Annie was diagnosed with Crohn's Disease in Feb 2010.She had a course of oral prednisone at the time of diagnosis and was put on pentasa as maintenance drug,.however my daughter never attained remission in the past 9 months.she was given on and off short bursts of entocort.We tried strict SCD for 4-5 weeks with good response lasting only 4- days.Currently we are trying EEN for the past 5 weeks I still see blood in her stools.Has anyone experienced this kind of scenario?Is this normal to have blood in stools on a daily basis?I would say my daughter always had blood in her stools every 2-3 days since her diagnosis in the form of bloody strings 1-2 strings /BM.My GI states it is normal to have blood in the stools of an IBD patients.

For the parents ,who tried EEN for their kids would you mind sharing your experiences...like how many weeks you have tried ?how did you wean your child from EEN and how long did the remission last? how did you figure out that your child is indeed in remission? Sorry for posting so many questions in one post..as you all can see i am really depressed and concerned at this point ..I don't know what to do next.. left a message with my GI office for further recommendations

Annies Mom

 Reply posted for AZMOM.

Wow, in some way it's good to see some of what we're experiencing in others--but of course, at the same time it's always too bad.  Wouldn't we all just as soon have nobody else suffer!  Anyway, our little boy was having horrible scary nothing-but-mucousy-bloody-stringy stools, so we know what you're talking about!  Luckily, he responded to some treatment (you can read more details at <a href="http://IBDinourhome.blogspot.com>our IBDinourhome blog</a>) but I will tell you, I understand how scary it was but can't imagine how it must be after so long.  Isaac never had solid poops and we weren't really clued into anything being too strange (for about a year--of course we asked about it, but got no good advice from his doctor) until they started getting bloody and shortly after that he started having pain too.  We seemed to have such a good response with enemas, probiotics and going vegan with an elimination diet, but we did so much at once it's hard to tell what helped most.  I might not have read closely to see what you had done with probiotics--so far I'm a big believer in them.

 Reply posted for alanschachter.

Hi Alan,

Thank you so much for your reply.I actually did starter diet for more than 10 days but it didn't work for us.May be i should look into paleo now..hopefully it will work.we are certainly not ready for Immuno modulators .

Regards,
Annies mom.

 Reply posted for alanschachter.

Hi Alan,

Thanks for your reply.
I noted that you are a strong advocate of Immune boosting in a natural way. I strongly believe in that too.I tried SCD for few weeks it seemed working for few days but  by 5th day my daughter had blood in her stools .I want to mention that i was using entocort on and off while she was on SCD.I still don't understand what went wrong as i have not changed anything during that time.

What are your thoughts about Helminth Therapy.

regards,
Annies Mom

 Reply posted for AZMOM.

Hi AZ Mom,

My daughter had labs drawn 2 months ago,has no anemia but slightly elevated inflammatory markers.,done before the start of EEN. We have to wait and see how the numbers are going to be when we go back for next appointment in 4 weeks.
As far as the acceptance of EEN, my daughter seems to be doing OK with  a BIG HOPE that she could get into remission and can eat what ever she wants.Sometimes it is a big struggle ,and for me it is heart breaking...hope you can understand what i really meant.

regards,
Annies Mom

 Reply posted for jcraig007.

Hi Jcraig007,

Sorry to hear that your little boy had to go through such a horrible ,rare side effect 2 to steroid use.Thanks for sharing your story.Also of a note we did use VSL#3 with no promising results but as you know every child is different ,I really wish and hope it works for your son.I used to mix with it apple juice.

Blessings,
Annies Mom

 Reply posted for Annies Mom.

Hi Annies mom,

 Reply posted for Annies Mom.

That is a little bit of a puzzle.  Hmmmmm.....  Are her labs, in terms of anemia, normal?  Just wondering. 

What does Annie think of the EEN?  I"m curious because that is one of our thoughts if she ever flares.  Not sure if I mentioned it but Claire was diagnosed just after her 6th birthday and is 7 now.  We have wondered how EEN with go with a child this age. 

Claire's Mom

 Reply posted for Annies Mom.

AZ Mom  & Lizzies Mom,

Thank you both for your time and input.
As you said every child is different, I did see some improvement in my daughters weight she did gain couple of pounds since the starting of EEN.As far as her activity levels goes ,she stays very active even if she is really sick to the surprise of her pediatrician!!! I am really puzzled here..our pedi GI called me back yesterday and said as long as she has 1-2 BMs/day ,no urgency ,it is tolerable,but planning a colonoscopy in Jan 2011 to decide whether or not she needs any escalation of treatment,and she does not want to prescribe any steroids at this moment.By the way mylittle girl is 6 now,but was diagnosed when she was 5yrs.Did i mention that we are using Proctofoam on as needed basis with no added results.I am adding one meal per day per her GI.

Annies Mom.

 Reply posted for Annies Mom.

Our doc wants a phone call with any sign of visual blood.   The ideal is no blood.  We haven't gone the EEN route, but I have heard success stories.   Every child is different, and hopefully your will get a good response with lasting results.   As for knowing when they are in remission, it is a combination of factors:  blood work, scopes, biopsies - that is the medical portion of it.  Then, I also like to guage what I see and know as a Mom:  how does she look, feel, activity, appetite, growth, weight, etc.  There have been times when her bloodwork was a little off, or her weight was a bit steady, but everything else was ok.   My point is, a lot goes into the "remission", but ultimately look at the whole picture. 

Lizzies Mom

 Reply posted for Annies Mom.

Annie - I can't comment on the EEN but wish you the best of luck.  I know there has been some dramatic success with that.

When my daughter came home from the hospital, I asked her ped GI how much blood was acceptable.  He said, "Ideally we want none."  I'm thankful that we have achieved the "none".  Now I know all kids are different so maybe you just want to talk about it with the doc again.  But really, I think the goal (or at least one of the goals) is no bleeding.

Blessings,

Claire's Mom