Crohn's Disease Forum » Parents of Kids with IBD » Just back from 1st appt.

09-18-2014, 12:31 PM   #1
Worried mama
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Just back from 1st appt.

Just back. Dr. thinks Crohns is likely. He wants a scope and colonoscopy done, which we have scheduled for 9/29. He will do biopsy and fecal protectin (not sure I have that term correct). I'm so worried that my son has had this disease for years and years and that they are going to find such damage. He mentioned remicade which makes me think he believes there is a lot of damage too....although he backtracked quickly saying we were jumping the gun. I know he has crohns, it's just a matter of where and how bad....if you have any advice, don't hesitate.
09-18-2014, 02:01 PM   #2
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Join Date: Jul 2011
Location: San Diego, California
Colonoscopy with biopsy is necessary for dx. The prep is the hardest part. Best of luck it's not IBD.

Remicade is often used first now, the "top-down" approach, especially for kids to get quick remission for growth, and to postpone possible complications over their lifetimes. It's not necessarily because of the severity of the disease, but all other meds take a long time to determine if effective or not and can be tried later
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
09-18-2014, 02:14 PM   #3
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The unknown can be very scary. We dealt with it for a long time. I was convinced my daughter had Crohn's and our GI was fairly convinced as well. Turns out she actually has an immune deficiency.

I know it is easier said than done, but try not to panic. Your biopsy results and fecal calp should give a more clear picture of what is going on and you can go from there.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
09-18-2014, 09:29 PM   #4
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Location: Minnesota

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For the colonoscopy prep, my bits of advice:

-A few days before, start a low residue diet, the day before try and do liquids only. This way there is less to clean out on prep day.
-Start early enough in the day to allow the prep to work before bed time. We started too late one time and my poor son was falling asleep on the toilet.
-If you're doing some sort of Gatorade mix, pick a flavor that is not his favorite.
-My son prefers I only mix 1/2 the prep with Gatorade, the other 1/2 with water. He alternates between the two depending how nauseous one or the other is making him.

As for Remicade, like Jenn said, it's starting to become the first line approach in kids. We didn't start with Remicade but wish we would have. Once you start getting test results back and have a better idea of what's going on, it might make sense.

Last, I know this is all overwhelming right now. Just keep coming back her and asking questions. We've all been in your shoes and understand what you're going through. Keep us posted!
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013

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