A Port for Remicade? Really?

[Mehita]

At yesterday's infusion, the nurse suggested a port for DS. A port seems a little extreme to me, don't you think? He's going to be on an eight week schedule and he does just fine with IV's if they use a j-tip or numbing creme.

Does your Remi kid have a port? Was one ever suggested?

 

[nogutsnoglory]

What? That's crazy. It's not a daily infusion and if the kid has no issues with finding veins that makes no sense.

 

[my little penguin]

But ports have disadvantages, too—most of all, a high risk of developing an infection, a blood clot or even thrombosis. Being vigilant about sterilizing the port site helps cut the risk, so nurses thoroughly train parents on how to cleanse and flush the port. Still, up to 30% of children with ports develop at least one bloodstream infection, according to research published by pediatrician Janna Journeycake, MD, in the journal Haemophilia in January 2008. Journeycake is also assistant professor of pediatrics, division of hematology-oncology, at the University of Texas Southwestern Medical Center in Dallas. Worse still, the infection rate climbs as high as 50% in those who develop an inhibitor, an antibody produced by the immune system in response to the factor product. These children need to infuse daily to fight the inhibitor, thus raising the odds of infection, Journeycake says.

From

http://www.hemaware.org/story/pros-and-cons-infusion-devices

I wouldn't place a port due to risks.
Also an iv is simple and well tolerated.
Add in most kids have success with remi for only a few years .
Just not worth the risk.
I assume this was a nurse at the cancer center
So a different place than the kiddy hospital KWIM.

No one had a port at the kiddy infusion center DS went to .
Just too risky .

 

[Mom2oneboy]

If your son does fine with the IV I don't understand why they are mentioning a port. Do they have to stick him multiple times to find a vein? If the nurse can't give you a good reason for getting a port, I would decline it. It's never been brought up for my 12 year old who is on a 6 week schedule.

 

[Jennifer]

I had a port for a year when I was 9 and never had an issue with it. Wasn't used for Remicade though. It was put in place just in case there was an emergency. That was 22 years ago though. Now days it doesn't make sense to put one in unless its difficult to get an IV in or if the veins blow often. I'd wait to get one until its needed.

 

[nogutsnoglory]

I almost got a port when I was going to need daily IV antibiotics but the doctors decided on an oral route. Ports are useful when needed but can cause undue complications as well so unless there is a real need I don't see why they said this. Plus, the more normal we can have kids feel, the better. It's tough enough on them as it is.

 

[crohnsinct]

Can I add to the chorus? WHAT?! Olivia has been on a 5 week schedule for almost two years and no mention of a port. As a matter of fact a parent once asked the infusions nurses about one andthey went into a big production on why it wasn't needed and why it is not advised. They even told her that possibly, one day, years dow the road O might need one but only because her veins are scarring something fierce but seriously they have plenty of other places to draw from at the moment so that is a very, very distant possibility and she will probably be off Remicade by then.

Gosh, I hope that didn't freak your son out.

 

[Mehita]

We were at the adult cancer center so I'm sure it's just common for people to have ports there. It threw me for a loop. I wasn't too impressed with our nurse. Our future infusions will be at the children's hospital.

Ok, no port.

 

[crohnsinct]

:rof::rof: hahaha yes! Tell them the committee decided...no port! :rof::rof:

Yeah I just read in your other post that you were at an adult center with cancer patients. That would explain it.

 

[polly13]

Would completely agree port is much too risky especially when the infusions are going ok

 

[araceli]

The nurses have hard time finding veins for my daughter every time she has infusion and they have not suggested one.