First Remicade Treatment

[Mj1gaynor]

Hi! My son (10 yrs old) is receiving his first remicade treatment at 7:30 tomorrow morning. For weeks he has had plans to go to an amusement park (water and rides) with friends in the afternoon. Is that safe? What can I expect for side effects? The hospital told me that it was fine, but I was hoping to have some parents give me advice. Thank You!

 

[my little penguin]

DS had remicade infusions for eight months at age 8.
He was pre medicated with Tylenol and Benadryl.
Honestly he was wiped out - slept most of the day of the infusion and exhausted the day after.

That said later on he was able to go to a swim meet the next day .
The first and second dose are the worst fatigue wise .
He has never had issues being around school kids parties etc..,

 

[Maya142]

My daughter is always tired the day after infusions, but other than that, no side effects. She actually enjoys the infusions - she gets to relax, take a nap and watch tv or read (plus she gets to miss school!).
She also does not get sick more often than other kids.
Good luck!

 

[Sascot]

No experience with Remicade, just wanted to wish you luck with the infusion

 

[Momtotwo]

My son has very high energy the evenings of his treatments. My concern would be about the possible sedating effects of Benadryl and safety with the slides. I would keep a close eye on him. Good luck.

 

[araceli]

Good luck with infusion today. My daughter does not get tired or sleepy not even with the benadryl so I guess it works different for everybody. She does not get sick more often than other kids. When she goes to the pool I always tell her to be careful about not getting water inside her mouth. (she is almost 18 LOL)

 

[crohnsinct]

Hey there. I know we use the same hospital and they no longer premedicate with Benedryl etc. That said, ever since they stopped that my daughter has no difference in energy etc.

Since this is his first infusion, just be sure to ask what signs of allergic reaction you should look for during the first 24 hours and if you are not going to be with him, make sure he understands them and the adult in charge has your number.

 

[Mj1gaynor]

Hi! Thanks for responding! I have another question. My son had his first treatment on Monday August 11th. We went to the amusement park for a couple hours then home. We left for st thomas vacation the next day. We were diligent about sunscreen except for this past Tuesday. (He missed the back of his neck). We saw a little red and got out off the sun immediately! I can't tell if the small bumps on the back of his neck are from sunburn or psoriasis. How long after 1st treatment would psoriasis show up? Any advice is appreciated. Thanks so much for all the support!!!

 

[crohnsinct]

Did it go away when he got out of the sun...all of my girls get red bumps from sun exposure and they go away in a day or two. I am guessing it is from the sun. Psoriasis doesn't usually show up as small red bumps. It is usually scaly and red but there is a very rare type of psoriasis that could be red bumps but more typically on the legs etc. There are also a host of other skin conditions it could be. Our hospital has an excellent derm department. If you want to send me a picture, I could take a look....not that I am an expert mind you.

 

[my little penguin]

Also red bumps can be "sand rash " from riding waves in the ocean .
DS is extremely sun sensitive once he started biologics .
SPF 100 and rash guards didn't cut it.
Had to move to zinka( pure zinc oxide ) and swimhood ( by stingray)
Plus long sleeve rash guards and flappy hats out of the water .

Hope the rash disappeared .