Prednisone | Imamother

amother

OP ↓

Tue, Apr 18 2023, 7:43 pm

My DS recently started prednisone as a part of his treatment for Crohn's and will be on it for at least another 2 months. He's been having a lot of side effects that seem quite extreme (insatiable appetite, very puffy red face, and extreme irritablilty). Anyone have experience with kids on prednisone and any advice to help us get through this?

amother

Lightblue ↓

Tue, Apr 18 2023, 7:45 pm

It’s very hard, nothing to do about the bloating but it went away completely after we stopped. Keep away from anything to salty and sugary, the medicine also gives a very strong appetite so I let my kid eat whenever he wanted , it kept him calmer, nothing else much to do but be patient and extremely gently. My kid was super irritable while on it. Good news is that it really worked for the Chrons and we haven’t had any issues since stopping it

amother

↑ OP ↓

Tue, Apr 18 2023, 7:52 pm

amother Lightblue wrote:

How long was your child on Prednisone?

amother

↑ Lightblue ↓

Tue, Apr 18 2023, 7:54 pm

amother OP wrote:

How long was your child on Prednisone?

A high dose for 4 weeks, and then weaning off took another 4 weeks so total 2 months. Face swelling went down right away took a couple of months to be completely down.

amother

Starflower

Tue, Apr 18 2023, 8:12 pm

my son had it for a different condition. SCD diet kinda helped (no major carbs) and meditation/hypnotherapy helped keep him calm. If he excercises a lot (ask your doctor) it wll help somewhat with the weight.

Refuah Sheleima

amother

Hibiscus

Tue, Apr 18 2023, 8:14 pm

My asthmatic kid was on it for months at a time. She literally was nuts when she took it, be there was no choice. She was out of control. Thank god she outgrew her asthma bh.
Try to eliminate sugar and carbs, give lot's of protein.

amother

Khaki ↓

Tue, Apr 18 2023, 8:27 pm

It's awful but those are the common side effects of prednisone. My dc had these side effects too. I'm sorry you're dealing with this. It helps if you mention to other kids in the family that the medicine is making him act not himself and they can try to be A bit tolerant. It's hard.

Side point, we found entocort to be effective with less intense side effects.

aworkinprogress ↓

Tue, Apr 18 2023, 8:34 pm

amother Khaki wrote:

I also took entocort for Crohn's and it didn't really have side effects. Ask your Dr if it's an option!
I recently had to take Prednisone for a different condition and it was awful awful awful. Can't imagine a kid having to deal with those side effects. Good luck!!!

amother

Snapdragon

Tue, Apr 18 2023, 9:25 pm

My son has been on and off prednisone for the last twenty years. We had prednisone pants for bloat
We had food for appetite ie a whole loaf of bread vs. a case of pringles
And self settling strategies for the irritability
We never allowed him to hit hurt or be rude no matter what .
I raised an outstanding young man capable of anything. I bentch you the same. You can pm me

amother

↑ OP ↓

Tue, Apr 18 2023, 9:49 pm

I appreciate all the responses and support. It's really, really difficult. I'm not worried about weight gain, he's been extremely malnourished so the increased appetite isn't a problem specifically although it can be frustrating all around. His behavior is completely out of control, angry, starts fights for absolutely no reason and is becoming aggressive (was never like this prior to the prednisone).

And yes, he was on budesonide for over a year (in combination with infusions). Budesonide is no miracle drug. It helped with some of the pain and other symptoms but not completely and did suppress his cortisol production.

amother

↑ Lightblue

Tue, Apr 18 2023, 10:49 pm

amother OP wrote:

I really empathize, it was really difficult. My mantra was this too shall pass. As for the aggression, there really isn’t much to do other then let them be, maybe some extra screen time for now to keep him occupied or something else he enjoys.

amother

↑ Khaki

Tue, Apr 18 2023, 11:52 pm

amother OP wrote:

I hear you. That does seem very challenging for you and your whole family. How have you been coping with everything? How are you feeling?

I know you didn't ask this, I'm just going to mention it in case it helps. We found scd to be life-altering. It's not a cure but it makes life so much better in so many ways for us. We still have flare ups from time to time but they are fewer and farther between and the Times in between are bh very good. I know it's hard with kids though, compliance and all. If this doesn't resonate, I'm sorry for bringing it up.

amother

↑ OP

Wed, Apr 19 2023, 11:09 am

amother Khaki wrote:

SCD or similar diet is not an option at the moment. He is an extremely picky eater and compounded with the malnutrition aspect there is no way this would work. I'm curious if your child is on medications or is only on the diet. From what I've read, diet alone is largely inaffective in children with Crohn's.