Remicade on an adolescent

[Choisel]

Hello, our 12 year old son will receive his first Remicade infusion to treat his fistula Crohn's disease. Do you have any advise for us ? Thanks

[karinamartins]

Hey there Choisel, I'd recommend you to take something to keep him entertained because it may take a while. Also save the day for him to rest after it. I'm not sure if it's the same protocol as here in Brazil, but they usually give us antiallergics before the medicine. Other than that, just pay attention on him later to see if he feels any side effects. Which I'm almost sure he won't. At my first infusion I already felt really better, so I hope your soon does too!

[Choisel in reply to karinamartins]

Thank you Karina! I will check on the antiallergics today with our gastro. It is so reassuring to hear that even after the first injection, you started to feel better. I hope it is the same for our son.

[SuzyQ67]

Remicade is one of the best for treating fistulas. He will do 3 loading doses to start, Remicade is an infusion, it is not a shot. Be sure he is well hydrated, this makes it easier to put in the iv. If he has a phone or Ipad take it so he will have something to do to entertain him. Depending on the dr he may be given pre-meds right before the infusion, it depends on the dr. I had a fistula & it worked well for me. He may feel tired after the infusion this is common, let him rest. I don't know if you can get his infusion date moved up, depends on his dr & where he will be having the infusion done. All of this swelling of his face what does the dr say the cause of this? I've never heard of a crohns patient having this issue? My first thought is does he have some dental issues going on? Please keep us posted.

[Eixor57]

I took Inflectra which is a generic for Remicade. My GI just told me to take an allergy pill 1 hour before infusion. And yeah, everything else the others recommended is right on. I don’t know if your son is on The Specific Carbohydrate Diet, but if he is not I would recommend that he start to help the fistulas heal quicker. I had a very bad fistula and the SCDiet along with Flagyl (as needed) got it healed up so that it never got infected again. The intro part of the diet is super important for someone just starting out. One year though after drinking coffee everyday I developed a horrible flare (coffee is inflammatory for some people), and my colon looked rotten. Looked like it was dying and that’s when I had to start the Inflectra. 1/4 of my hair fell out (but it grew back just as quickly), and the infusions along with the SCDiet helped heal my entire colon. My 6 month colonoscopy looked amazing and my GI even mentioned the word “miracle”. 😊 Anyway, I just thought I’d share because just knowing how young your son is and what he is going through breaks my heart. 💔😢. So I’m sharing something that works for me and for many many people with IBD. There is a FB group called Breaking The vicious Cycle SCD Community. The group is so helpful and they all have IBD. 🙏🏼🙏🏼🙏🏼