Partial obstruction (in the hospital again)

[kernelmom3]

Grayson had his first Remicade infusion almost two weeks ago and it went great! He was scheduled to have his next infusion in two days but this morning everything changed. He woke up around 5:30 AM in pain so I paged his GI and was told to go to the hospital lab for labs and an xray. As we were getting ready to leave he started howling in pain. So we went to the hospital but straight to the ER. He didn't have a fever or any other symptoms...only the severe pain coming in waves. Then he threw up. Labs showed his white count was 16 and I didn't ask what his sed rate was because I was too afraid. He had a CT scan done and his bowel is very inflamed which is causing a partial obstruction! He was admitted and the plan is to do the infusion tomorrow (a day early) and IV steroids. For right now he's getting IV fluids and pain meds. I have some questions for all who've been down this road: 1) is this what a flare-up is? 2) if he had Remicade two weeks ago and has this inflammation now, does this mean it didn't/won't work? 3) has anyone had their child take steroids with Remicade? I thought that wasn't a good idea for some reason. 4) aside from fluids and bowel rest (no food or drink), they're not treating him tonight. Should I be pushing for steroids ASAP or has anyone had to wait and see like this?

This is so frustrating! This is his fourth hospital stay in three months!!! He started crying tonight about just wanting to feel normal again. Poor kid. He's so overwhelmed with school (waking up early, making up work, getting tired easily, etc.) but he doesn't want a 504 because he doesn't want to feel different.

 

[syzygy]

So sorry to hear that. Flare-ups are different for everyone, but what your son is experiencing sounds a lot like the worst of my SBOs. Did they do a NG tube? If not, I found that walking was really helpful when I was in the hospital last year.

What a disappointment that that happened so soon after the infusion. I'd have to defer to others' expertise about what that means for treatment, but it may be that because he's still on the induction phase the doc may want to try another round.

Best of luck to you and your son.

 

[my little penguin]

DS was on steriods and pred at the same time.
It sometimes takes the full three loading doses to work.
DS took about 3 doses plus a few weeks.
Wishing you a speedy recovery

 

[Justanothercp]

This sounds like my "flares". Flares which I still have, even though I'm on Budesonide, Remicade, Omeprazole and Lialda. When it gets ER bad, ng tube helps. It's really yucky going down but helps a lot. I don't think this means Remicade won't work, it isn't going to prevent everything, just make these incidents hopefully less likely and day to day life better.

 

[Catherine]

At this time my daughter only symptom of a flare is severe pain.

Hopefully the hospital will have him feeling better soon.

 

[Desperatemom]

Sounds like same procedure my daughter had last hospital stay. Was there for four days, liquids only. IV with antibiotics due to an abscess that caused infection. She was not given Predisone until she went home. Started Remicade about same time - she just had her second infusion today. Still on Predisone but tapering off. She has not felt any big difference after the Remicade but as mentioned earlier, it may take another round. It's frustrating but it sounds like he is being taken care of.