What reactions to Remicade warrant a trip to hospital?

[chefmommaof6]

My 12 yr old son had his first infusion this morning. It is now night, and he has complained that his arm has started hurting more (the arm that was the iv was in) and the back of his throat feels cold. I just gave him a benadryl, just as a precaution. He has no fever. I asked if his chest was hurting, he said no. He has abdominal pain from the Crohn's. And his throat hurts a little. I have looked it up online, trying to figure out what reactions are serious enough to call the doctor or go to the hospital, or if this is totally normal, and I am just freaking out. I don't want to cry wolf, but reading about the reactions hasn't helped really. Wondering what other parent's experiences were after the first infusion. I'm now afraid to go to bed, but I'm so tired. We've had so many nights lately with him in bad pain.

 

[Clash]

We were given a sheet with all the reactions that would warrant investigation but our Remi nurse told us anything that made us uncomfortable warranted a call to after hours on call GI or a trip to the ER for a quick check.

My son never had more than a blister appear on his lip about an hour after infusion, I called and the nurse said to give benedryl but if anything else occurred head to the ER. The blister went down before the benedryl even had time to work and nothing else occurred.

Hugs.

 

[Jennifer]

I'd definitely call the after hours on call doctor/nurse. They should be able to help you decide what to do. Hope he feels better.

 

[Sascot]

Hope it just settles down on it's own so you can get some sleep. Not something I have dealt with so no great advice sorry.

 

[my little penguin]

Please understand Benadryl is a comfort med- in other words it will make the person feel more comfortable with a minor reaction. It will NOT stop anaphylaxis from progressing.
The only med that can do that is epinephrine .

We were given a sheet when to call and what constituted a delayed reaction and what was an acute reaction .
My son had both.
His skin rashes were delayed reactions.

He had throat burning , trouble breathing and tongue( mouth tingling) within 20 minutes of the end of the infusion twice . These were acute reactions .

Most definitely call your on call Gi .
They are there to answer your questions 24 hours a day.

From
http://www.kidswithfoodallergies.or...=149&title=anaphylaxis_symptoms_and_treatment

Signs of Anaphylaxis1

Skin: Flushing; itching; hives; swelling; rash; itching of lips, tongue and palate; swelling of lips, tongue and back of throat (uvula); itching around eyes; redness and swelling of eyes; and tearing of eyes.

Respiratory: Itching and tightness of the throat; difficulty swallowing; change in voice; hoarseness; dry cough; harsh high-pitched breathing (stridor); itching in the outer ear canals; shortness of breath; chest tightness; cough and wheezing; itching of the nose; runny nose; congestion; and sneezing.

Gastrointestinal: Nausea; cramping abdominal pain; vomiting; and diarrhea.

Cardiovascular: Decreased blood pressure; feeling faint; fainting; not acting normally; chest pain; and heart rhythm abnormalities.

Other: Uterine cramping in women; and an aura of impending doom.

 

[Jennifer]

How's he doing now Chefmommaof6? Were you able to speak with someone on call?

 

[chefmommaof6]

I sat up with him most of last night, but he seemed to improve, not get worse, so we ended up waiting it out. This morning, his arm felt fine. He has had a headache today, and He has had more abdominal pains tonight, but no hives or rash, no fever or chest tightness. If I had had any more symptoms, I would have called last night. Or took him to the ER. For now, we are just watching him closely.

 

[chefmommaof6]

mylittlepenguin, is the risk of anaphylaxis only for immediately after they do the infusion or can it happen anytime after? How long after can they have that sort of reaction? They kept him there for 30 minutes after, but I wondered if it's possible to exhibit that reaction later. Thanks. I wish I had seen your post last night. Very helpful info.

 

[my little penguin]

Typically acute happen with 30 minutes if they are going to happen.
A large portion can still happen within 2 hours as a general rule for anaphylaxis to food drugs etc....
However everything I read stated 24 hours is considered acute for remicade and up to two weeks is considered delayed.

Your infusion center should have given you a sheet.

 

[chefmommaof6]

They did give discharge papers with instructions. But those were pretty brief, and not that helpful.

 

[Jennifer]

Even though he's feeling better now it would be good to inform his doctor of the symptoms he was having after his infusion. They may slow down the next infusion or give you a better idea as to what you should do if it were to happen again.

 

[Sascot]

Glad things are settling down. Hope they continue to get better.