Parents and Caregivers

8 yr old daughter recently diagonosed



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karenam

Joined: July 16, 2013

Posted: Jul 16, 2013 8:59 AM
Hi - all my name is Karena and my 8yr old daughter was diagnosed with indeterminate Colitis and Crohns.  She was hospitalized for 2 weeks and on iv steroids and TPN.  She has been home for a month on oral steroids (tapering down), 6MP, and Pentasa.  She has been doing great.  She had blood work a month ago and her numbers looked great..  We had blood work on Saturday and got a call from the Dr yesterday and he was not happy with the results.  her Sedrate went from 20 to 48 and her platelets are high, protein is low..  He is worried she will have another flare up.  We have an appt on Friday but I am so bummed out about this and just want to catch a break for her..  This is so frustrating..
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lizzies mom

Joined: September 09, 2009

Posted: Jul 19, 2013 1:10 PM
 Reply posted for karenam.

"Safe foods" are those that you know agree with her and are gentle on the gut.   We worked with a nutritionist and started a food diary when she was first dx, it really helped pinpoint all the culprits.   It isn't surprising to me the different presentation your daughter had.   I've learned over the years everyone is different; I actually know of a child who was dx with Severe CD and only presented with a swollen knee!   I hope your appointment goes well today.   Just keep in mind things will get better and there may be a few bumps along the way.
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karenam

Joined: July 16, 2013

Posted: Jul 18, 2013 10:44 AM
 Reply posted for lizzies mom.

Hi - thanks for that it makes me a feel a little better.  When you say "safe" diet what do you mean by that?  I try to keep her away from veggies, fruits, and she usually eats bagel things and turkey, fish, chicken, eggs.. sometimes she has pizza here and there but not anything too much..  As far as the water go.. I make sure she drinks water all day long.  The symptoms she had when she was dx was blood in her stool.  She never had diarrhea if anything she was constipated all the time and had to be on miralax.  Makes it even more confusing cause it seems like her symptoms are diff from what the majority of people have.  Want her off the steroids poor girl is so puffy and acne all over her face and she is so moody!!  Hoping for some good insight when we go to dr on Fri..

Thanks
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lizzies mom

Joined: September 09, 2009

Posted: Jul 17, 2013 6:25 PM
 Reply posted for karenam.

I've been a CD mom for nine years now, my daughter was 4 when she was dx.    There are going to be a number of ups and downs.   If my recollection serves me correctly, the high platelet count could be  a side effect from the the steroids, or even an unassociated infection.   Also, the sed rate is possibly on the rise from the taper, perhaps too quick and maybe an adjustment needs to be made.    Try to keep calm (I know it is easier said than done).   Thankfully you have good healthcare and can see the doc on Friday.   Try to keep her hydrated, lots of water, and keep to a "safe" diet for the time being.    Sometimes it takes a number of tries to get the right combination of meds to work.   Once her system has an opportunity to adjust and "cool off", with CRP, SED Rate and other bloodwork coming in line, she'll start to feel better. 

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