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Crohn's Disease Forum » Parents of Kids with IBD » Remicade Infusion at Hospital Or Infusion Ctr, rapid infusion


06-22-2017, 02:01 PM   #1
amw2003
 
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Location: Deland, Florida
Remicade Infusion at Hospital Or Infusion Ctr, rapid infusion

My 14 year old daughter is terrified of needles. Since she was hospitalized and diagnosed over a year ago she has been going back to the hospital outpatient infusion clinic and very happy with how she is treated there even though she is always nervous. She gets a private room, adjustable bed, large flat screen TV that has Hollywood movies, internet, TV and also a meal is provided as well as there is a kitchen for parents.kids to also get more snacks/drinks. They are aware of her aversion to needles and always use a numbing spray as well as a slower drip from IV since she complains it hurts if it is too fast, they also have us wait 1/2 after infusion is over to make sure there is not a reaction. The new Dr wants are to go to an infusion office instead where they do not numb her arm first, They are on a first come first serve whether there is a TV or comfortable chair and only 2 of four areas (not private) have this, also food/drinks, etc are not provided provided plus they want to do a fast infusion and they do not have you wait to see if there is a reaction. This is going to traumatize her to get an IV without numbing and she is worried if it will hurt to have the Remicade go in faster 1/2 the time. Even though this is becoming common practice who know what years from now what they will find out regarding this. The Dr can write orders for the other place where she is comfortable but I think gets paid more if he does it at his office. Curious as to what everyone thinks about rapid infusion and what the places are like where their kids have the Remicade infusion done. Thank you

Last edited by amw2003; 06-22-2017 at 02:02 PM. Reason: font
06-22-2017, 03:32 PM   #2
Maya142
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My kiddo always did it in the hospital infusion center. Same stuff- TV, bed, games, wonderful nurses (she didn't need numbing cream but they would have given it if she needed it). She got snacks, but not a meal. The infusion always took at least 2 -2.5 hours. We never did the rapid infusions.

I would definitely do it where your kiddo is comfortable - why make her switch and traumatize her? That kind of makes makes me suspicious of the doctor - he should want the best for your daughter, NOT the best for him.
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06-22-2017, 06:05 PM   #3
Optimistic
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This is raising a red flag for me. What is reason he wants her to change? Is there a problem with insurance at hospital? Is there a medical reason to change to his center?
06-22-2017, 06:19 PM   #4
Ladybug12
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My 14 year old daughter is terrified of needles. Since she was hospitalized and diagnosed over a year ago she has been going back to the hospital outpatient infusion clinic and very happy with how she is treated there even though she is always nervous. She gets a private room, adjustable bed, large flat screen TV that has Hollywood movies, internet, TV and also a meal is provided as well as there is a kitchen for parents.kids to also get more snacks/drinks. They are aware of her aversion to needles and always use a numbing spray as well as a slower drip from IV since she complains it hurts if it is too fast, they also have us wait 1/2 after infusion is over to make sure there is not a reaction. The new Dr wants are to go to an infusion office instead where they do not numb her arm first, They are on a first come first serve whether there is a TV or comfortable chair and only 2 of four areas (not private) have this, also food/drinks, etc are not provided provided plus they want to do a fast infusion and they do not have you wait to see if there is a reaction. This is going to traumatize her to get an IV without numbing and she is worried if it will hurt to have the Remicade go in faster 1/2 the time. Even though this is becoming common practice who know what years from now what they will find out regarding this. The Dr can write orders for the other place where she is comfortable but I think gets paid more if he does it at his office. Curious as to what everyone thinks about rapid infusion and what the places are like where their kids have the Remicade infusion done. Thank you
My daughter just received her firstly rapid infusion. Ithe took ano hour and a half. With a 30 minute wait to see if there was a reaction. Normally, she is asked if she wants the numbing. The one issue that we have is the nurses always have a hard time sitting up the iv. My daughter stated she didn't feel a difference with the rapid infusion.
06-22-2017, 07:38 PM   #5
my little penguin
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Things to consider besides comfort
It may be insurance driven
Office /clinics don't have access to life saving equipment quickly(i.e. ER) like a hospital clinic
Reaction rates are high with remicade
Reaction rates increase with speed of infusion
Which is why if you react the next infusion they run very slowly

Ds reacted twice to remicade at a hospital infusion clinic
I would not be comfortable for him to have one at a doctors office
Given his risk factors

I will say for ds when there is any procedure to be done they first give us outpatient satellite clinic as an option
Vs
Main hospital option

Then 90% look at his chart and explain
Only the main hospital is acceptable for his history

But other kids have plenty of satellite procedures
Safely


But a doctors office
Not in my comfort zone at all
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06-22-2017, 07:43 PM   #6
Maya142
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The other thing I wanted to say - you can get prescription for numbing cream/spray from your GI. Then ask the infusion center (if you absolutely have to switch) to use it. They probably will be ok with it.

The other option that helps with IVs - Buzzy: https://buzzyhelps.com.

Also hot packs bring the veins out and make them easier to see. And being well-hydrated.

We would also take an ipad or laptop to the infusion center, so that my daughter could watch whatever she wanted. Also take headphones, since she won't have much privacy. And a snack!

I'm just saying that if you have to switch for insurance reasons, there are ways to make it comfortable. It's not ideal and honestly, I would want to do the infusion in a hospital because reactions are relatively common and need to be treated quickly.

Our hospital refused to do rapid infusions also because of the reaction risk.
06-22-2017, 07:45 PM   #7
my little penguin
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We have both the cream ,spray , and buzzy bee at home to take with us for any needle procedure so Ds always has options
We just put it on in the car
06-23-2017, 08:05 AM   #8
malorymug
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call me old school, but I'm uncomfortable with the rapid infusing of Remicade. If Remicade is working why do something that might get a reaction and then Remicade isn't an option anymore. Our kids are young and need these drugs for a long time. the longer Remicade works the better.

Also, my boy used to have a very anxious response to needles. But over time and just the routine of monthly IVs, he doesn't freak out anymore. Your daughter might surprise you soon.

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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
06-23-2017, 01:28 PM   #9
Clash
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My son had his infusions done at his GI group's IV clinic in the GI group complex. It was nothing like what you describe though other than non private (there was a secluded room set aside that I assume was available upon request but he never requested it). The clinic had like 7-10 recliners, flat screen TV, DVD (later apple tv), wii and Xbox live. The kids were provided with snacks and drinks throughout infusion and also warmed blankets. They used numbing spray or gel when requested and the nurses really catered to the kids (my son says he misses remicade ha!)

Insurance wise we could've probably used our local hospital iv clinic since the GI office is 2 hours away but in our case the local hospital IV clinic didn't provide all those things and also didn't have adolescents getting IVs so C was more comfortable with the traveling. But the children's hospital was right across the street from GI group and I doubt insurance would've covered their iv clinic because it would've been more expensive. So I would definitely check into that.

If it's just the docs suggestion I would decline and list out why you are declining. There were kids that were rapid infused at our clinic but C never was.
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8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
06-23-2017, 04:32 PM   #10
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
My insurance covers the infusion at hospital or Drs. Office. The Dr. told us today that if we want to go back to where she has been getting it the last year at the hospital then he will not see us again. I am concerned that at his office they also do not have her stay an extra 1/2 hour to watch for a reaction among other things. The rapid infusion bothers me since it is relatively new and that much of Remicade going in to her that quickly could possibly cause a problem years from now perhaps. She also has problems when they flush in between the pre-medicines since she says it hurts unless they go very slow. we chose to stick with going to the hospital and will find another Dr. I think it is all about money and he makes more profit doing it at his office.
06-23-2017, 04:37 PM   #11
Maya142
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That's insane!! I can't believe the doc won't see her if she has the infusion in the hospital!!

You're definitely making the right choice with finding a new doctor!
06-23-2017, 05:00 PM   #12
Optimistic
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Depending on the system he makes very little or more likely nothing when you do infusions at hospital. He is probably a part owner of the on-site clinic and makes a nice chunk. I'm sorry but your time with him is over. You don't want to force his hand because you probably would question the care you get after. But... I'm sure a good lawyer would write him a letter questioning the ethics involved and how that might be viewed by his certifying board, state medical licensing group, or media!
06-23-2017, 05:07 PM   #13
Clash
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I spoke with our insurance today in relation to something else and asked about our policy and if clinic infusions and hospital infusions were covered when both were close together. They said they'd cover either way although the hospital may be a bit more out of pocket but shoot Remistart would cover that.

If the doctor is that set on using his infusion center at the stress and discomfort of his patient I would look else where for a GI doc. I just don't think it allows for good communication and relations going forward for him to set demands like that. Does he even state why? Does he have hospital privileges at the hospital she receives the infusion at?

Last edited by Clash; 06-23-2017 at 07:55 PM.
06-23-2017, 06:20 PM   #14
amw2003
 
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Location: Deland, Florida
Yes, he does have hospital privileges there.
06-23-2017, 07:54 PM   #15
Clash
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That's crazy! I would just have to find another GI. How could he think he's building open lines of communication, trust or a good doc/patient relationship? So sorry!
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