First Remicade scheduled! SCARED!

[Aniuko]

My daughter has her first Remicade infusion scheduled for November 30th. I know I shouldn't be reading scary warning and death threats but I do! I am so scared! I need some support from you guys!

Also, we are supposed be at the hospital at 8.30 and they said she cannot eat breakfast and cannot eat during the 3 hour infusion. I know my daughter...she will be miserable...or am I exaggerating? Is it normal not to eat before or during the infusion? Why? She also has to stay 2 hour after the infusion at the hospital, just in case? Again, normal?

And, what signs should I be watching for while and after infusion? I know the docs ail be there but I would like to hear your thoughts too.

So freaked out now...

Ania (mom of 12 year old Kasia with CD diagnosed 2009, allergic to Azathioprine, MTX not enough at the moment)

 

[Tink572]

My son has been on Remicade for a little over a year now. They've never told him not to eat before, and often he takes lunch with him and eats during the infusion. For the first infusion they had him stay about 30 minutes after the infusion was complete, but now we leave as soon as it's over.

Things they've told us to watch for during and after are fevers, itching, difficulty breathing. I'm sure there is more, but my son has never had any type of reaction besides being tired from the Benadryl they give him before the infusion.

Best wishes for your daughter's infusion!:ghug:

 

[muppet]

Just be vigilant, not scared. Remicade works wonders for a majority of patients.

My daughter had an extremely negative and dangerous experience with Remicade, but she is in the minority. In our case, it first manifested as a tiny rash on her hand. It looked like a bug bite and we assumed it was one. Then she started having severe joint pain so bad that I had to carry her and the rash spread over her entire body, even making some of her hair fall out.

I'm not sharing this to scare you, just to forewarn you that even small, minor seeming symptoms following an infusion should be watched. We thought it was just a bug bite.

 

[Aniuko]

Tink, thanks a lot. It must a German thing then about not eating before Remicade. I will definitely mention that in the States they don't starve people )))! It's good, I was just thinking that it is dangerous to eat or something. I didn't ask about their reasoning as the doc called me on my cell while I was driving.

muppet, I am sorry about your daughter's reaction. You didn't scare me, it is good to know to pay attentions to all details. What happened next? Where you already at home? Did she have to get something quick?

 

[muppet]

Her reaction was dangerous, but slow. It took us several days to get her into the hospital and treatment was basically not to be on Remicade anymore, and pain drugs for the joint problems, topical steroids for the rash, IV fluids to keep her hydrated, and observation. It took them quite a few days to figure out that it had been the Remicade although I suspected it the entire time. They quarantined her in case she had some exotic disease. She was a patient of the Infectious Disease staff for most of her stay, in fact.

My daughter also was allowed to eat before and during infusions. There's no reason to be NPO for a Remicade infusion that I'm aware of, unless maybe they're sedating her for it? Sarah got Versed for a few infusions because of her extreme phobia of needles.

 

[Aniuko]

Wow! Good to have it in mind and it is interesting how sometimes we seem to know more than the doctors, right?

They are not going to sedate her so I don't know why. I was just thinking that I might give her a little bit of white bread and water for breakfast so she doesn't feel nauseous with an empty stomach. It is hour drive so she will have to wake up early.

Thanks

 

[crohnsinct]

No food?! What? Our infusion center is like a banquet hall. All the kids get their favorite goodies from their guilt ridden parents and the infusion staff orders up lunch from the hospital cafeteria.

My daughter has been on Remicade since February and it has worked wonders.

As far as the scary things (and I love you are keeping your humor...death threats LMAO) I think for the most part the real scary things will occur during or shortly after infusion so they do take the first few very slowly and do keep you a bit after (although we were only kept a half hour also and now fly through infusion and out of infusion).

One thing to remember though is have her drink a lot of water the day before. Inserting the needle is much easier the more hydrated the kids are.

Good luck! I hope you have the same success we are having.

 

[Clash]

I agree with Crohnsinct, my son has his infusion at the Ped GI's IV lab, so basically all kids, all getting remicade, all with IBD and all the parents send goodie bags with snacks and drinks. The nursing staff also provides snacks and drinks. They have a Wii and the kids pick out a movie or can even bring a movie for them all to watch, so it is all food, fun and games while the parents wait quietly in the waiting room haha!!!

C has never had a serious reaction to the remicade, on his 4th infusion a blister came up on his lip about an hour after infusion, it came up in minutes and I called the remicade nurse she said to give benedryl and if that doesn't resolve or any more symptoms occur head to ER. The blister quickly went away after benedryl and we haven't had any issues since.

 

[Aniuko]

Crohnsinct, Clash...that almost sounds like fun! We might be moving to the States soon (government decision) so if the Remicade works, there is something to look forward to. Thanks a lot!

 

[Jmrogers4]

Aniuko,
Hope it all goes well and she does not have any reactions so she can start feeling better and get those new skis she was telling Jack that she would need if she had a growth spurt. Did she get to ride in the gondolas? I think Jack is planning on emailing her tonight. We were out of town over the weekend and a scary drive home so he has not had a chance to email her again. Good to know the date so he can send her a fun message before the infusion. Let us know how it goes.

 

[Mom2oneboy]

I totally understand you being nervous. My son just started Remicade in August and I had a serious case of nerves leading up to his first infusion. It is a hard step to take! But we want our kids as healthy as possible and when nothing else works we do what we need to do.

One thing I didn't expect at the first infusion was having to sign papers acknowleging and accepting all the risk factors. When the infusion nurse started going over them I stopped him immediately and said I knew all the risks and to just show me where to sign. I did all my research ahead of time and was all too aware of the risks. I didn't need to be reminded of them right before they infused him. I also didn't want my son to hear what all those risks are and get upset.

We have never been told to not drink or eat before infusion. In fact, they have snacks in there for them. If it's during lunch time we pack his lunch and he eats it when he's there. It's in his ped GI's office so sometimes the doctor stops in and says hi. The nurses come in and chat. They are really treated like rock stars! My son usually brings his ipad and school work. They also have a tv and can pick a movie to watch. The nurse never leaves the room and monitors their blood pressure, asks them how they're feeling, etc. Our infusion nurse does infusions all day long. It's all he does so he is trained in what to do should a reaction occur.

We only stay about 30 minutes after the infusion. During this time we are usually going potty, packing up and scheduling the next infusion. Sometimes S falls asleep on the way home due to the benedryl but within an hour he's back to feeling normal.

My son saw immediate results from the Remicade. It is no doubt working for him. He told me the other day that sometimes he even forgets he has Crohn's now. Music to my ears!!! Knowing how well Remicade is working for him makes it easier for me to take him for the next infusion. However, I still have moments where I do the "what if" and the "C" word comes to mind. I don't think that will ever go away! But today I rejoice because today he is well and loving life.

I hope the Remi works for your daughter! You will get through this. The first time is the most stressful! Positive thoughts and hugs being sent your way

 

[Aniuko]

Aniuko,
Hope it all goes well and she does not have any reactions so she can start feeling better and get those new skis she was telling Jack that she would need if she had a growth spurt. Did she get to ride in the gondolas? I think Jack is planning on emailing her tonight. We were out of town over the weekend and a scary drive home so he has not had a chance to email her again. Good to know the date so he can send her a fun message before the infusion. Let us know how it goes.

Thanks a lot! I also hope this will go well. I am really happy she writes to your son, she finally opened to someone with CD and the skis definitely made it easier! Oh, and Kasia will enjoy any cheering up before the infusion.

Thanks for all the support!

Ania

 

[Aniuko]

Mom2oneboy, thanks a lot for all the support. I have a non so happy experience with "the papers". They say EVERYTHING in front of the kids. I hoped that the doctor will read in my eyes when he was telling me about possibility of perforation during colonoscopy, internal bleeding, possible emergency operation...oh well..possible dead. And I see my child's eyes getting bigger and bigger!

I will make sure that they don't scare Kasia too much!

Thanks,

Ania

 

[jmckinley]

Hugs because I know the feeling. I read all the labels too. A crazy thing to do to ourselves sometimes. My son also took remicade for a while. Our clinic actually served lunch, so I don't understand the no food thing unless it's in case of an allergic reaction.

Most people do fine with remicade, so I bet your daughter will also do well. Here they give benadryl and tylenol before the infusion. If a reaction occurs, you are in the right place for it to be taken care of quickly. A reaction is recognizable. My son's was and it stopped within a few minutes of stopping the infusion from flowing.

It's normal to be nervous, but think about how great it will be when the remicade starts working and she is feeling better. It is a great medication for so many people.

 

[my little penguin]

DS started remicade at the end of August.
He just had his 4th infusion yesterday.
It makes such a difference.
Even in 24 hours once we got to maintenance.
DS is encouraged to eat during since the infusion can cause your blood sugar to drop.
The drug scares me but now that I have seen it work it scares me he won't be able to take it forever.

 

[awmom]

My son has been on Remicade for almost one year. The first time I was also scared, but as everyone else has said, they took it very slowly and kept him for 30 minutes after. Now, I pick him up at school, he has lunch during his infusion and watches a movie, and then back to school he goes when he is done!! Best of luck....i hope it works for your
Ittle one.