02-28-2013, 07:38 PM   #1
AverysMom's Avatar
Join Date: Feb 2013
Location: Charlotte, North Carolina
Newly Diagnosed- need advice :)

Hello! I am going to post this in a couple of different places so bear with me if you see this more than once!

After 2 long months of testing my 13 yo daughter finally has a diagnosis of Crohns. After reading on here some I know there is no "typical" Crohns presentation but being a nurse and thinking she lacked many of the hallmark symptoms associated with Crohns I really was taken aback at the diagnosis. Her issues started with a skin rash, which was diagnosed as Erythema Nodosm. Labs came back with a sed rate of 55, CRP of 8.6 and platelets 434 which led us to believe there was a systemic inflammation issue. After non invasive tests to rule out other differentials we were sent to GI. The only GI symptoms that she had had was intermittant diarrhea and blood in her stool back in October which I thought only happened once. No cramping, abdominal pain etc. She has had ankle pain and swelling in both ankles, which I thought was related to the skin issue.

EGD/Colonoscopy Tuesday showed Crohns. It was almost as if I was in a tunnel after hearing the diagnosis- I think I only heard every third word the dr said. The scope showed mild esophagitis and duodenitis, multiple ulcerative areas in the large intestine colon, and an area of major concern at the terminal ileum. We left with scripts for Prilosec 20mg and a Orapred 2 week taper. We go back next Thursday and the dr wants to start 6-MP.

My questions to all of you, which I will also talk to the doctor about but lets be real, those with personal experience can simply be more objective.
Is this standard course of treatment for a child? How bad is this 6-MP? What are the side effects truly like? Were any of you able to take an immunomodulator to get into remission and then come off? We are going to start gluten/dairy free this week with the goal being a Paleo/SCD diet.What questions should I have for the dr? How bad does my daughters case sound?

Thanks in advance for the advice- I think I am in a bit of "survival mode" at the moment

Mandi (Avery's mom)
03-01-2013, 01:24 AM   #2
Join Date: Jan 2012
Location: Vancouver, Washington
Oh Mandi I feel for you. I myself (43 years young mother) was diagnosed with Crohns one year ago and I know how miserable it can be for an ADULT much less a CHILD!! I don't know about the meds but I just wanted to reach out to you and tell you that I feel so fine these days so be hopeful and know that she can get better! I started off with all the meds and then tapered down and now Im just going to start humira for 6 months. I feel TOTALLY NORMAL tho! No problems with stool, anything! But its all about finding what works. That's the rough road. But she's in great hands with you and she is going to be JUST FINE!! Don't worry!! It's scary I know...but really....she will be okay!! ((HUGS))
03-01-2013, 02:31 AM   #3
Senior Member
hugh's Avatar
Join Date: Oct 2011

My Support Groups:
Paleo/SCD is a great start, some improve immediately, some are difficult cases.
My belief is that gut bacteria and leaky gut are the key to the disease (and most others), and wheat/grain and sugar are the worst offenders.

Your doctor's response will probably be the standard 'it doesn't make any difference' but may veer either way, to supportive or condecending.
There is nothing in grain that you can't get (usually in a better form) from paleo.

There's plenty of paleo sites out there but i'd recommend you start with someone like these two, use the search options and check out their sites (if you want)
- i refer to the 'definitive guides' often
'Liberation can only be gained by practice, never by discussion'
SN Goenka
03-01-2013, 10:30 AM   #4
Forum Monitor
Charleigh's Avatar
Join Date: Nov 2012
Location: Southern USA

My Support Groups:
I highly suggest that you get the book Breaking the Vicious Cycle and read it. It just made so much sense to me. I didn't want E on meds. We went straight to SCD and his improvement has been great. You can follow his progress on my Incredible E and the SCD. PM me if you have questions.
Mom to 4 incredible kids ~ 17, 15, 13, & 7
Including Incredible "E" ~ 15 year old Crohn's kid
Diagnosed at 11.
Enteral Nutrition
03-01-2013, 10:37 AM   #5
Forum Monitor
Charleigh's Avatar
Join Date: Nov 2012
Location: Southern USA

My Support Groups:
I posted alot more in that first post but for some reason it got cut off ~ ack!

To start with, I am so sorry that your daughter has been diagnosed with Crohn's. Being the mom of a crohn's kid, I know how terrifying it can be. I felt relief that we finally knew what we were dealing with and I felt scared to death all at the same time.

Our pediatric GI wanted E on 6-MP but I just couldn't do it. I looked at the incredibly long list of side effects and it just couldn't be our first option. If I went straight to meds and E ended up with kidney or liver failure or cancer and I never tried something more natural first then there is no way I could not blame myself. Our plan was to give a strict SCD 6-12 months before we considered meds.

I researched until my eyes hurt and I read way too much. Elaine Gotschall's book Breaking the Vicious Cycle was the first thing that really made sense. It sounds like your daughter would be a perfect candidate to try diet firt

Thread Tools

All times are GMT -5. The time now is 03:09 AM.
Copyright 2006-2017 Crohnsforum.com