Well, my son took the Remicade plunge yesterday.

[Steve S]

So we went to Dell Children's Hospital yesterday for Nathan's first Remicade infusion. It was a looong day, but all seemed to go well. He went to school today and seems to be none the worse for wear. His is perianal, and we're really hopeful that when he goes in for Dose 2 in two weeks his bum will already be healing up.

We had a nurse who's had Crohn's over 20 years, and she was very encouraging. She was on Remicade for five years, basically stopped on her on before going on Humira (easier to do two quick shots a month than the infusion every 2-3 months) and said she hasn't had a flare up since she started the biologics.

Thanks so much for all your help and support. Even the search engine helped to find answers as I found out who had children with similar issues (perianal). Not sure when we'd start seeing the healing, but I'm hoping it's soon. He ate like an ox yesterday (he's been on Entocort for a few weeks). He's far from underweight, but he doesn't usually eat and eat and eat like he did yesterday.

Anyway, thanks again.

Steve

 

[imaboveitall]

Hey there Steve!
So you guys decided to do it eh...definitely a mixed feeling, that. :smile:
Some good news from us, V got her first lactoferrin result post-Humira and it went from over 3000 to 105. So your boy may see quick results also.

I was happy to hear about what your infusion nurse said, that was very cool to read. We have a neighbor (adult) who also was on Remicade for 5 yr and switched to Humira just two weeks before V. She said Remicade worked great for her for most of the 5 yrs.
I like to hear POSITIVE things about these drugs.

Did you ever think you'd be discussing your kid's butthole online with strangers? Yes, Humira drove me to it also.

 

[Dexky]

Good to hear Steve Hope the good times keep on coming!!

 

[DustyKat]

Thanks for the update Steve.

It's so great to hear that all is going well with your boy! I too hope that the Remiacde heals things up quickly and continues to work for a very long time to come. Good luck!

Dusty. xxx

 

[Jenn]

It's a hard plunge to take but worth it if it works. We noticed results in Alex within a week when he started Remicade and later, his bloodwork confirmed it. I found the nurses to be terrific in administering to the kids. Hope it works quickly for Nathan!

 

[QueenGothel]

I hope it works for Nathan. I just posted on your first post today... Lol I have been at the hospital with my DD for over a month and am trying to catch up on here. This forum is wonderful, I feel the need to read through everything when I can to offer support.

Stay strong, your doing great.

 

[izzi'smom]

So wonderful to hear!!

 

[Steve S]

Just a quick update:

Nate had his second treatment on the 16th of March. Other than it taking FOUR sticks to get the IV to take, it went very smoothly. They topped out at 250 (whatever it is -- mgs per minute?) on the IV. The first time in the hospital, he said he felt funny when they got up to 150, so they peeled it back to 125 and that's where he stayed the remainder of the treatment.

Everything is starting to heal up down near his bottom, and my wife just spoke with the doctor's office about his bloodwork from two weeks ago, and his inflammatory markers were both nonexistent (think they were 40 or so the first time around before any treatment). Something else was -5, but Tam doesn't remember what it was since she was really just checking those Crohn's markers that were elevated from before.

Anyway, seems to be a very good report, and I just wanted to share with everyone. Thanks again so much for all the advice and sharing y'all's stories.

Steve

 

[Tesscorm]

Glad all is going well!

 

[imaboveitall]

AWESOME :emot-waycool: I love when things work
Guess you won't be joining in the Butt Check/Poo Patrol Fest with some of us and our slotted spoons...

 

[Kat]

So excited for Nathan! Hope Remicade keeps on working for him!

 

[QueenGothel]

I too hope it works for him for a long time and keeps him in remission.

 

[SarahAnne]

That's awesome!! Hope it continues to help him!

 

[Sascot]

Great news, glad it's helped him!

 

[Steve S]

Thanks, everyone.

We're all really excited. I think we're getting ready to put the whole family on a paleo diet, too, so hopefully that helps. Our daughter (who had stomach issues years ago....upper GI performed, et cetera) is also due to get a physical soon, and they'll be checking for Crohn's markers in her, as well. The whole fam will be doing the diet, but I'm hoping we only have one CD kid...not two. :facepalm:

Steve

 

[izzi'smom]

So glad he is starting to heal; up already, and fingers crossed that your dd's tests are neg!

 

[Jenn]

Glad to hear he's responding well to Remicade. Yay!