DD in hospital right now

[QueenGothel]

Been getting IV steroids for 2 days. Still bleeding. Hemo is good... Blood work coming back normal. Still flaring. Lots of bloody stools. She is 3 and will be 4 in two weeks. The attending GI doc said he will suggest taking her off Asacol and starting Remicade infusion. I am not comfortable with this. She is so young and I don't think they gave it enough time. She was doing great until we start weening the predilisone we went from 7ml down to 4ml and this is when the symptoms started. What do you guys think? Another thing is she is trained on how to take her pills. She hates needles and freaks out when they give her an IV. I don't want to tramatize her. Do you think we should exhaust all other (less side effects) med before trying something so new?

 

[Crohn's 35]

Hi Mary, I am so sorry you have having to witness this happen to your daughter. Remicade is a stronger drug, and I am surprised they didnt opt for Humira first. Some gi's now are in the belief of "hit it hard" then back off. Prednisone is not a long term drug, that is an evil drug. I have been on it many times. The remicade is going to be hard for her to sit for 3-4 hours. Could you ask the Doc about Humira first? Just a thought, it sucks too but not near as bad or as long.
This is so much for a little girl. Hugs to you, and your young one.

 

[DustyKat]

Hi Mary,

I'm so sorry to hear that Rowan is still having problems.

Did you go from 7ml to 4ml in one go? or am I reading that wrong?
If you did perhaps the jump is too great and she needs to be tapered at a slower rate.

Has Enteral Nutrition ever been suggested to you as a way of bringing her inflammation under control. It is not an easy path to tread and would most likely involve a naso gastric tube but it has been found to be just as successful at inducing remission in children as steroids are. Most people need to use a maintenance medication to maintain remission but the EN itself is very safe. We have a forum here about it so you may like to have a browse...

http://www.crohnsforum.com/forumdisplay.php?f=161

Good luck Mum and keep us posted!

Dusty. xxx

 

[tiloah]

I'm so sorry you are dealing with this. My thought will be with you both. Hope they get her on something that helps.