Help! Advice...

[positivemum]

Hi I was just wondering if anyone had had the experience my son is having and if so if there was some way of helping.

He is 15 and mainly on Fortisip shakes with some food. Nothing has changed food wise and his bloods are all fine except low WBC. But he is having looser stools with more urgency and bleeding. The bleeding is an on off symtom of his and he has pred suppositories for this if needed. We think it is all stress related but he can't put his finger on it except part of it is definitely linked to going on 4 day trip abroad by coach with school for the first time. He will be on the coach for 12 hours. He is worried about needing the toilet etc which I think is making his symptoms even worse!

Any one got any clever, safe ways of helping the urgency or preventing him from needing to go so frequently? We really want him to get on the trip

 

[my little penguin]

What meds is he on?
Increased bloodly loose stools would be a sign of a flare for DS .

 

[positivemum]

no meds at moment and all inflammatory markers normal

 

[my little penguin]

Markers can be normal and still having a flare .
Bloody stool is not caused by stress.
I would call his GI most kids need a maintenance med to keep damage from occurring .

Blood work does not tell the whole story in most kids .

Has he had imaging and a scope ?
This may tell a more complete picture.

 

[Patricia56]

If he's having bloody stools I would not send him on this trip. You do not want him to go into a full blown flare with many stools a day and have to transport him back home for treatment. Talk about embarrassing in front of his classmates. I truly understand the disappointment but if you're sick, you're sick. Adding stress will only make things worse.

This is one of the hard realities our kids must face as children with a chronic disease. They don't always get to do what everyone else does because it will cost them their health. If this pushes him into a full blown flare it would probably mean missed school, missed athletic activities, missed social opportunities - the list goes on. And you don't know for how long. So it's not worth it in our experience. When remission is solid - NO symptoms - then go full bore ahead. When remission is not solid - some to many symptoms - then be cautious and keep the big picture in mind.

I agree you need to call his GI. You treat the whole person not the labs. And labs can change quickly. My son was having a few bloody stools with normal labs and 4 days later was in the hospital with 30+ bloody stools a day. He was in the hospital for 10 days.

And he should be on maintenance meds IMHO. I have yet to hear of a child who didn't need them in the long run. Sometimes diet helps for a few months but eventually there's a flare and sometimes it's terrible.

If you send him on the trip the only practical suggestion I have is for him to use adult diapers.

 

[AZMOM]

Not sure when he is supposed to leave. Could you call the doc tomorrow? Maybe short course of steroids to get him through the trip (if there's enough time for them to kick in?)?

I agree though that normal labs does not guarantee no disease activity.

J.

 

[Johnnysmom]

I would give his GI a call, my son's GI would want him in the office if he was having loose and bloody stools. These are signs that a flare is coming on. For many kids things can get pretty bad before it is reflected in the labs. This would make me especially nervous given that he is currently untreated.

The GI might have a good plan on how he might be able to still make his trip. (((Hugs)))