Medication question

[hbonsky]

medication question

Not new here, just havent posted in a while.

I'm just wondering if there are any of you parents out there who have children who did not responded to any medications?

My 4 year old has been on several different treatments and none have worked. In fact, some made his symptoms worse. It got to the point where he had a colectomy/ileostomy a week ago and we are hoping that this will help.

Any advice or suggestions on steps to take would be so helpful. We are so lost.

 

[izzi'smom]

DD (izzi, 4) has been on Pentasa and Prednisilone (the Prednisilone used to work, but doesn't seem to be anymore) We are currently giving Remicade one more shot, as it doesn't seem to be working, and also are trying enteral nutrition.
I am told Humira is not likely to work if Remi didn't, and that there is one more drug (Tacrolimus) to try before a colectomy.
SO, I guess I can't help, as I haven't been there before, but we very well may be following in your footsteps.
How are you all adjusting? (Zachary especially?) I have heard that while it is a difficult adjustment, some people do so much better (and I think despite my obvious sadness about surgery/an ileostomy at this age it would bring relief for dd, who is up 5-10 times a night to use the bathroom and is chronically tired.)
It all seems to happen so fast...he had surgery in under a year from diagnosis! What were his symptoms? I hope that this is the answer for you and Zachary...(((HUGS)))

 

[Dexky]

That's tough Heather! I hope he adjusts quickly and it brings back his childhood!

 

[hbonsky]

It sounds like we are in similar situations. Our doctors told us the same thing about the meds. Zachary had all of the same symptoms. He was constantly tired, always in the bathroom (even throughout the night), weight loss, constant fevers, rashes, sores... Zachary is adjusting well to wearing the bag. It has only been a week, but he seems to be eating more and has some energy so we are hoping that this will continue. Kids seem to do better with adjusting than adults. I know I would have a hard time, but he just accepts it and moves on. Since he does not respond to meds, we are concerned on what the next step will be if he continues to have trouble. I hope the next med works for Izzi. But if you end up having to do surgery, it isn't so bad. So far, Zachary has gotten to play without having to stop every half hour to run to the potty. We just empty the bag every few hours and it only takes a second. Good Luck!

 

[izzi'smom]

I am so sorry that you are dealing with this, but I hope that the surgery was the right answer and that he continues to do well! I wonder what a crohnie playdate would look like...they'd never meet in between bathroom breaks lol!

 

[DustyKat]

Hey Heather,

We haven't been in your situation but I sure hope the surgery helps to settle things down for Zachary. Both of my children had no choice but to have surgery and in our case it has been a godsend.

I wish your little guy all the luck in the world...:goodluck:

Keep us posted...:hug:
Dusty. xxx