Is this "typical?"

[SCAR2003]

My daughter (10) was diagnosed recently with moderate Crohn's of the esophagus, stomach, small intestine, and large bowel.

Pentasa did not work, so the doctor took her off of that and started her on Prednozone/Prevacid. After 11 days of no effect, her steroid was increased from 25mg to 30 (she was skin and bones). After 4 days, she is eating (uncharacteristically) like a pig and having less fevers, but no decrease of pain, diarrhea, nightly trips to RR, etc.

Does this sound typical, since she has it in so many locations? Am I just unrealistically expecting a fast miracle?

We are patiently waiting for the bloodwork to come back to see about starting the 6mp.

BTW - this website has been a god-send. You all are uber helpful. Thanks in advance.

Candi

 

[my little penguin]

Sounds about right.
DS has crohn's in his esophagus stomach duodenum terminal ileum cecum and rectum.
Pred gives your appetite back but it takes about 8-9 weeks for the gut to heal.
While its healing 6-mp will be started to maintain the healing the pred did.
It takes about 4-6 months to be fully effective so that is why it's started about the sane time as the pred.
For my son pentasa was not enough
We then tried 6-mp it went to his liver
Added allopurinol but never got to therapuetic levels .
Changed to Mtx with pred as a buffer for it to work .
Never got off pred
Switch to remicade ( at 1 year since dx)
That finally fixed DS.
Crohn's didn't happen over night and it takes time to fix it.
What one drug with a for one kiddo may not work for another
Just don't be afraid of the drugs they sound scary but
Crohn's that is under treated is scarier since it will do a lot of damage and can be fatal .

Take it one day at a time
Look for trends over a period of weeks not days .

 

[CrohnsKidMom]

Welcome, Candi, sorry about your daughter's dx. My 9 yo son was dx'd last yr at age 8 and was started on 30 mg Prednisone. Our GI said Pentasa would not work for our son as his CD is mainly in the small intestine. I believe Pentasa is more effective for UC, or CD in the large intestine. Prednisone increased my son's appetite immediately and he started to have some improvement right away, but I think it was about 2 wks in before the abdominal pain went away. He was on it for a total of 5 mos, including a slow taper. It took about 6 or 7 mos for his inflammation markers to reach the normal range. Imuran had been started right away as it takes about 3 mos to kick in. Unfortunately, my son could not tolerate it, so he's now on methotrexate injections, but that is working well. I hope you girl starts feeling better soon. Take care!

 

[Cupkatemom]

Welcome, Candi! Hugs to you both - this is so tough! We are here in DFW area as well. Which Doctor are you seeing? I can't speak to your questions, just wanted to offer local support!

 

[AZMOM]

Candi - I would say yes, with diffuse, moderate to severe disease, it takes awhile. It's awful that it is typical and yet a relief when you are looking for typical!!!!

When Claire was dx, she was inpatient on IV steroids for a couple of weeks until the inflammation was reduced enough to be able to digest the oral steroid (doc's words, not mine). She had just turned 6 and was on 40mg oral when we first went home and it still took awhile.

Glad you are on the site - you are not alone!! It's hard!!

Hugs,

J.

 

[SCAR2003]

Welcome, Candi! Hugs to you both - this is so tough! We are here in DFW area as well. Which Doctor are you seeing? I can't speak to your questions, just wanted to offer local support!

We see Dr. O at Cook in Fort Worth.

 

[Brian'sMom]

I've always heard that steroids will reduce the inflammation, but don't heal things. But our GI is so adamant about No Steroids. So Brian has only been on them 2 times in 9 years. Both times he was on it he ate like a pig too!!

 

[malorymug]

We see Dr. O at Cook in Fort Worth.

Hi there! I'm new here too. My 13 year old boy was diagnosed with crohn's about 3 weeks ago. I'm in DFW too and see Dr. O!

We just got our results of the MRE. I was holding out hope for a 5 percent chance that it wasn't crohn's until the results . Definitely crohn's.

My boy has been on prednisone for 3 weeks and it has helped a lot! His appetite is back, he has energy, and best of all hope.

We start 6mp this morning.

 

[malorymug]

Oh and as far as your question, I thought prednisone was a miracle too, but my understanding is that it isn't stopping the disease process. My son grew a fistula in the month between the scope and the MRE while on prednisone.

 

[Momtotwo]

Hi there! I'm new here too. My 13 year old boy was diagnosed with crohn's about 3 weeks ago. I'm in DFW too and see Dr. O!

We just got our results of the MRE. I was holding out hope for a 5 percent chance that it wasn't crohn's until the results . Definitely crohn's.

My boy has been on prednisone for 3 weeks and it has helped a lot! His appetite is back, he has energy, and best of all hope.

We start 6mp this morning.

malorymug- what were the findings before the MRE? Hope the 6mp is very successful!

 

[malorymug]

malorymug- what were the findings before the MRE? Hope the 6mp is very successful!

The scopes showed inflammations in the stomach, duodenum, ileum, and colon. The biopsies from the scopes showed granulomas, but all blood work came back normal. With that, the doc. told us it was a 95% chance it was crohn's. And, Oh Boy, did I hold out for that last 5%.

 

[Momtotwo]

The scopes showed inflammations in the stomach, duodenum, ileum, and colon. The biopsies from the scopes showed granulomas, but all blood work came back normal. With that, the doc. told us it was a 95% chance it was crohn's. And, Oh Boy, did I hold out for that last 5%.

I"m sure you did, malormug. Any parent would! Did they offer explanations for possibilities besides Crohn's? We have positive scopes, biopsies pending, slightly elevated CRP, no anemia, Promethius IBD indication UC. But we were told it cannot be anything except Crohn's.