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My 10 yr old was diagnosed last July with Crohn's - her symptoms were a moutful of sores, slight fever, lack of energy, and some tummy aches - she had a touch of diarrhea but that was never an issue.  After a bout of steroids we made the choice to consult with a nutritionist and rather than going the drug route have been doing a gluten-free, milk and ice cream (lactose) free diet along with VSL#3 probiotics, fishoil, and vitamins.  My daughter has shown absolutely NO symptoms of the disease since August.  She has been active in gymnastics (9 hours per week) and everything else as normal. 

We just did a blood test to see how things were going and now have an appointment with her GI who is concerned.  Her SED rate is slightly elevated at a 25 (0-20 is normal).  Her SED rate at the time of diagnosis was a 49 and while on the steroids was a 12, so right now we are somewhere in between.  It also appears that she is slightly anemic and she has not really put on any weight - she weighs 61 pounds and the dr said she'd like her to be 65.

We are so not ready to go the drug route because of side effects and I think the SCD diet is just too much for us and her to handle.  How common is it for Crohn's patients to have elevated SED rates?  I'm guessing that she could have this issue even if she were on drugs - if the drugs worked perfectly we'd say there was a cure, right?  Does this mean the disease is active or could this be an indication of an all-out flare? 

This really blindsided me since she has been feeling great.  The only thing that I've noticed is the weight issue, but she's never been a large kid and the fact that she is in competitive gymnastics and working hard nine hours a week didn't make the weight issue seem to big. 

Any advice or ideas would be appreciated.  Our appointment wih the GI is next Tuesday.

K's Mom

 Reply posted for momofk.

Thanks both of you.  I just got off the phone with our nutritionist and we've mapped out a plan to increase her VSL, add in iron, restart her calcium/zinc supplement and see how it goes.  We're also going to do a IGG food allergy test to double check that there are no foods like eggs or dairy that are causing a reaction.  I know some may think we're crazy, but our babies are worth it! 

Our nutritionist echoed what you said about her weight - didn't feel it was way too low especially considering she's a gymnast.  I haven't seen a lot of tall, heavy gymnasts before! :)

I love having this forum as a place to go to.  I need to get better about reading and responding to others - I still feel "new" to all of this. 

Thanks again for your support and kind words - it means the world to me.  I know we all just want our kids to be healthy and happy and only we can understand the feelings of frustration that goes along with these diseases.

Mom of K

 Reply posted for momofk.

AZ mom makes a good case.....her #'s aren't through the roof.   I've said this so many times, but the bloodwork doesn't give the whole picture.  So much more goes into it.   She is active, keeping up with her activities, and feels well, so I'd keep an eye on her #'s, but not cause any add'l worry to her/myself.  

Lizzie has always struggled w/her growth/weight.   Our doc always wishes her to weigh more.  Guess what, I want to weigh less!  Sometimes we can't have what we wish for.  All kidding aside, we have met with a nutritionist and learned ways for increase calorie intake on a day-to-day basis.  It has been slow, but it is coming along and Lizzie is finally 66 lbs. (she's 11).   Sure there are kids a lot bigger in her class, we all aren't made to be Jolly Green Giants.   I wish she could be healthy and 200 lbs, size doesn't matter, health does.   So long as they are healthy, who cares!

I know it is difficult to do, but try not to read too much into the #'s.  The internet alone can make one go crazy.  See how your appt. goes next week.   Good luck.

Lizzies Mom

 Reply posted for momofk.

I wish there was an easy answer to your question.  While 25 isn't high, it is a change.  If you trust your doc, I'd see what they think.  Might just be worth re-checking in 30 days or so to see if the ESR is trending up or down???  Has she been sick with any other illness?  I'm sure you already know that the ESR isn't specific to the bowel. 

What I have learned after a bazillion hours of reading and my own personal experience is that "tough kids" can seem symptom free while the damage is happening on the inside.  When they get symptomatic (fevers, diarrhea, etc), it can be more severe than expected on the inside.  Now that is not EVERY kid - it is just some of them - I realize that.  For me, I have one of those kids that rarely complains so every once in awhile we get blindsided. 

Sounds like a time for watchful waiting and a list of questions for the doc......we are in that boat ourselves right now.

Hugs,

Claire's Mom