Prednisolone

[Crohn's Mum]

Hi. My daughter was recently diagnosed. EEN was making her feel so nauseous she couldn't continue so she's on steroids (prednisolone). She on 8 tablets per day for 4 weeks, then 7 per day for a week, 6,5,.......
So far, after over 3 three weeks there's been no improvement in her symptoms.
Does anyone have a similar experience and did the steroids eventually kick in? Luckily she has no adverse side effects so far.
Thanks

 

[my little penguin]

You may want to try in the parents forum


http://www.crohnsforum.com/forumdisplay.php?f=49

Have you let the doctor know she isn't improved
She may need the higher dose longer
As far as een
Was she on polymeric formula or semi elemental??

Some kids need more to reduce inflammation

 

[Tony H]

Hi Crohn's Mum , the first time I took oral prednisone I had relief fairly quickly , I would contact your daughters GI as soon as possible and ask for advice , or if you have access to an IBD nurse contact her and explain the situation , I find that contacting the IDB nurse can get you into see the GI a lot faster , the good news is that prednisone is only one option , there are lots of meds out there now and hopefully your daughter will feel a lot better soon .

 

[Maya142]

I would also talk to your GI or IBD nurse. Some kids need a higher dose of Prednisolone, others may need IV steroids. Some might need to also do EEN at the same time as steroids. Or they might want to start a maintenance med if they haven't already.

She should have improved after 3 weeks on steroids, so you should definitely let the doc know.

In terms of EEN - would she consider an NG tube? That way you can control the rate and do the feed over a much longer period of time. And she doesn't have to taste the formula. So she may not get as nauseous.

It sounds really awful and scary, but we were really surprised - my daughter didn't think an NG tube was bad at all. She inserted hers every night and removed it in the morning, so no one at school had to know. Other kids choose to leave the tube in all the time, if they don't want to learn how to insert it.

It was a lot easier than we were expecting and now my daughter says it was way easier than drinking formula and she'll never go back to that.

Changing the formula to a semi-elemental or elemental formula also may help with nausea.

Good luck!

 

[Tubes]

When I was 12 the 1st time I was put of oral steroids it took about 6 or 7 weeks and my docs had to keep upping my dose to get some results.

 

[Farmwife]

Any improvements?

Pred is the only drug that worked quick for my dd but all others always took a long time.