New diagnosis- Advice needed :)

[AverysMom]

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

 

[Farmwife]

Hi and welcome.

Survival mode is something we know all to well around here.
As far as how bad hers is.....every kid is soooooo different. My girl has at last scope showed only microscopic damage but she's not responding to treatment. Other's can be totally inflamed and scarred up and the first treatment can work like a charm. I hate to say but this disease has a mind of it's own. My girl's GI mentioned 6MP as her next step. I'm sick over the idea of a 4 yr old being on it but having her in pain all the time is way worse than the side effects. I know more parent's will be along. Hang in there it will get better. We're all here for you.

 

[my little penguin]

6-mp is pretty standard to start off for kids.
My son was on it for 8 months with no real side effects.
His ast and alt did get elevated but the Gi adjusted the dose and added allopurinol .
For my son the drug was just not enough.
Remember 6-mp takes at least 4 months to start to see an effect.
Kids typically stay on pred while on 6-mp until it takes over.
You may want to look at EEN .
It has a high success rate . Is offered routinely in Europe/Canada for kids but not the US unless you ask about.
DS did this and now takes a half dose (3 shakes of peptamen junior a day) plus food to help maintain remission.
Scd is very hard for adults . Ibd kids tend to need 150% of the calories of a normal kid just to grow so formula helps them do that since the peptide chains are more broken down so the body has to use less energy to get the calories /nutrients from the formula.

Keep in mind Ibd kids have a hard time stating above the 25% for weight and height.
Formula gives them that edge so that they can keep growing like their peers .

As far as symptoms my DS had some mikd stuff at first - ibd was nit on our radar at all
but as time went on he keeps moving toward more classical presentation .

I wish it was easy but we are here to help and remember every single drug out there is scary including Tylenol if you read the fine print .
But the docs are watching very closely for any little bump in the road .

 

[Sascot]

Hi and welcome! Sorry to hear about your daughter's diagnosis. It is a shock to the system to realise it's something that won't be cured.
My son had mild Crohn's diagnosed after a year and a half battle to get the doctors to listen (he only had a sore stomach - height and weight were good, no diarrhea or constipation).
6mp is pretty standard for a first line treatment. My son is on his 4th week and so far no noticeable side effects apart from a little tiredness. I have to say I fought not to use the 6mp, but unfortunately there are not that many drugs to choose from. My son has a fistula in his bottom which had a huge abscess last year - I do wonder if I had started the 6mp sooner, whether it could have been avoided. The doctors do weekly blood tests, then 2 weekly then monthly to make sure the body is coping, especially the liver function.
My son had an 8 week exclusive EN diet (Modulen) via an NG tube as soon as diagnosed, instead of steroids. It is something worth looking into, to do along with the 6mp to give the bowel a rest and allow the inflammation to subside. It certainly worked for us.

 

[Jmrogers4]

Hi AverysMom,
I responded to another one of your posts but I just thought I'd ask how she is doing today?

 

[AverysMom]

Aww thanks for checking in. We decided to go ahead and go gluten/lactose free since half the family does anyway and she is totally committed to doing what is best. Still has some pretty significant swelling in her ankles but only 3 days on Prednisolone so we will just wait it out.

 

[izzi'smom]

Just wanted to welcome you...I have no experience with 6mp but wish you luck on going gluten free! We did Paleo all summer...I found it was super simple as long as I did solely meats/ vegetables/ fruit. Gluten free was difficult for me to get the hang of.

 

[Jmrogers4]

Makes it easier when everybody is eating the same thing Hope the swelling goes down soon.

 

[CarolinAlaska]

Hi Avery'sMom. I'm glad you found the board. My 13 yo daughter was diagnosed in January. What were your daughter's symptoms that led you down this path?

My doc also recommended prednisone followed by 6MP. I was doing some research of my own and found out about exclusive enteral nutrition being especially good for children with delayed onset puberty (like my daughter) and those underweight. We're on her fourth week now. It has not been easy. At our next visit we are going to discuss 6 MP. I don't know much about what to expect with that yet either.

Before our diagnosis, we had found gluten free diet was very helpful with our daughter's symptoms. It is probably one of the reasons why our diagnosis was delayed, we didn't know that she had Crohn's. We thought she was having side effects to seizure meds and gluten intolerance, etc. I think it took me 12 years to realize that she had a problem that was GI (and I'm in the medical field too) - she'd already been seen by a GI when she was a baby for failure to thrive and had been given a clean bill of health. We didn't think we needed to go down that path again... nor did we want to put her through a lot of medical testing if we weren't going to be able to figure out why. Anyway, we know now...

Let me know how the prednisone goes. That is the path we've avoided so far.

 

[Niks]

Hi Avery's Mom

Glad you found us, you'll get fabulous advice and support on here.

I don't know much about 6MP , my daughter is still being investigated. I imagine it is a real shock to have this diagnosis without continuing GI symptoms!

Good luck with treatment and diet.

Hugs to you both :ghug:

 

[AverysMom]

Thanks for the support...I feel that it will certainly be needed on this journey

 

[Dexky]

Hi AverysMom, 6mp was also my son's first maintenance med. He was on for a little over a year w/o any side effects. Like MLP, it failed to maintain remission for him. The only thing in your story that jumps out at me is the 2 week pred taper is very short by comparison to my son's.

Have a look at this 6mp thread….
http://www.crohnsforum.com/showthread.php?t=44911