My 11 year old daughter was just recently diagnosed with Crohn’s

[Momof3amazingkids]

My 11 year old daughter was just recently diagnosed with Crohn’s

She started prednisone on Sunday and she is in more pain being on this medication. Has anyone experienced this and should we continue on the steroids? She is taking Pepcid with it.

 

[Pilgrim]

My 9 year old son was just diagnosed and started prednisone 10 days ago at 40mg dose. He is still in a lot of pain. My thought is that maybe it needs more time to work.
Pain is his main symptom.
He's missing a lot of school.
How is your daughter doing?

 

[my little penguin]

Steriods take a while to work.
More than likely the pain is from Crohns
The gut didn’t get bad overnight
Steriods can take up to 6-8 weeks to work and heal
My kiddo was dx at age 7 he is now 14
Is the worsening pain from reflux or abdominal cramping ?
Steriods can make reflux worse
But the GI can increase the Prevacid or add other meds if needed to help the reflux pain.

It tough in the beginning but you will get through and the steriods will help her heal

What maintenance medicine is she on ?

Steriods can’t be used long term and most maintenance meds take 6 weeks to 5 months to work so they are started at the same time
As Steriods

 

[Momof3amazingkids]

She is taking Pepcid along with the prednisone. Dr wants to add omeprazole.
She will start weaning off prednisone weekly and then the plan is her to start MP6.

The pain really didn’t start until her second dose of prednisone this first day.

 

[Momof3amazingkids]

My 9 year old son was just diagnosed and started prednisone 10 days ago at 40mg dose. He is still in a lot of pain. My thought is that maybe it needs more time to work.

Pain is his main symptom.

He's missing a lot of school.

How is your daughter doing?

She is miserable! She can’t eat, has no energy, and is STILL going to school. I feel so guilty sending her but she doesn’t want to miss more school. She was doing ok before the prednisone but now she is miserable.

 

[my little penguin]

Please ask about start date for 6-mp that takes 3-4 months to be effective
Our GI will no longer use 6-mp due to increased lymphoma risk .
They only use methotrexate instead.
When Ds was dx 7 years ago they used 6-mp
But no any more
Definitely ask

 

[Momof3amazingkids]

Please ask about start date for 6-mp that takes 3-4 months to be effective

Our GI will no longer use 6-mp due to increased lymphoma risk .

They only use methotrexate instead.

When Ds was dx 7 years ago they used 6-mp

But no any more

Definitely ask

I will! Thank you so much!!!!

 

[Maya142]

My daughter always has stomach pain with steroids. She needs a PPI to prevent her stomach pain/reflux from getting too bad. We also use Carafate, which coats the stomach. That really helps.

I would try the PPI and see how she does with it. If she's still in pain, then I'd ask about Carafate.

We also avoid foods that make the reflux worse - tomatoes for example.

She sounds like one tough kid!!

I would also ask about the 6MP - at the very least, they should start her on it while she is on Prednisone since it takes so long to kick in.

Our GI also prefers MTX and only uses 6M/Imuran when absolutely necessary.