Middle School with CD

[Brucefam4]

Hi!
My 13 yr old son had what they thought was a virus, then we ended up in Children's hospital for 18 days, during which he was diagnosed with CD.

Steroids didn't work at all in the hospital, so he was put on Remicade. LOVED it! He was back to normal showing no symptoms, and we even thought maybe they misdiagnosed him.

That didn't last long... only 4 months, and he's been back in the hospital twice, this time they added Methotrexate and another pain medicine.

We had the option to stop Remicade and try Humira... but was nervous that he wouldn't be able to go back on Remicade (is that true, once you go off you can't go back on)?

We 've heard the Humira injections are so very painful... ?????

THE WORST PART is that he keeps blowing ivs and for every Remicade infusion, they have to try 2 or 3 times before finding a vein that works. Any suggestions other than drinking and heat?

With Remicade and Methotrexate will he catch every little cold/virus? He has a cold now that he can not get rid off... been a month and a half!

eeeeeekkkkkk... just sinking in that this is not going to go away.

Robin

 

[Crohn's 35]

Hi Robin :welcome:

Sorry your son is having a rough time. Remicade is a biologic that reduces your immune system and so does Methotrexate, it is a form of chemo. I always thought when you are sick you should be taking off Remicade. I have been on it but I reacted to it so I don't remember. Humira does sting for a minute but nothing that bad. I have no experience with the Pen, I use the syringe and it really wasnt that bad, but then again I have been poked and proded many times.

I found if you slap the area a few times the vein becomes more prominate. I too have a hard time with IV's and such.

What pain med is he on? Just wondering because some are more potent than others.

Hope you find a way to get rid of your sons cold, been a bit too long. Could be a good idea to get all his blood work checked. :hang:

 

[glum chump]

Hi Robin

Welcome to the forum. I'm sorry that Remicade is losing some of its efficacy. Have the doctors considered shortening the length of time between doses to see if that might help? It is true that if you stop Remicade and want to try it at a later date, you might build antibodies against it and it stops being effective.

I was on Humira and used the pen. It stung for about ten seconds. There's tips to minimize the sting, but it's not too bad and there's no concerns around IV. In terms of the IV, I too have problems with my veins and I always request that the IV team come and start my IV since they're more experienced. If he's ever getting meds daily through IV (like antibiotics or something), then they can always put a PICC line in, but it won't help with the Remicade.

You might want to check out the Parents Forum---there are other amazing parents who would give you lots of good advice. There is also the Treatment forum with subforums for Remicade, Humira, etc.

I hope things start turning around for your son real soon.

Kismet

 

[Dexky]

Welcome Robin! My son has been on Humira since this spring. It does sting for a few seconds but he doesn't let it bother him. We put an ice-pack on it a few minutes prior which seems to help. The pros of Humira over Remi (in my book) are it only takes a few seconds every two weeks and it's done at home.

Please come to the Parent's section here...http://www.crohnsforum.com/forumdisplay.php?f=49...and repost your story! Just copy and paste if you like. It will be seen by all the parents in there.

Good luck!