C's surgery thread

[Clash]

Ok so the first remicade went well. The nurse said his loading doses are set up at 0, 4 and 4. They have seen less reaction with this loading schedule when restarting remicade. The had some labs they did also. Hope to get them back soon. They premedicated with benedryl.

I thought C might balk at the prospect of starting back with infusions being 18 and having time taken away from school, work etc but he said he was glad to be back on and even though it didn't do all that we hoped the first time he felt it did help and he hopes the surgery has him in a place where he can stay on remicade for a long time. Me too, kiddo!

 

[Maya142]

We had a (somewhat) similar schedule the third time for M - 0,3,3. Is his dose the same as it was? We have had to increase it every time she has restarted Remicade.

So glad it went well! Fingers crossed!

 

[Tesscorm]

Glad it went well!! And great that he's on board with it - so much tougher when they're fighting you on it.

I hope it does the trick and remi helps him for a LONG time!

Do you have the option of choosing from more than one location for the infusion? We have a number of locations available to us and one is open on Saturdays - that's usually when S goes.

 

[Mehita]

Woohoo!

 

[Clash]

We do have other locations we could use that are closer to us but they would be at hospitals and cost more. We would change to have a shorter trip, C is at that age where he wouldn't want them on Saturdays as it might interfere with weekend plans.

We have discussed moving the remicade to his rheumatologist's office since it is a lot closer but also feel that would be a hassle since his GI would be in more need of knowing ups and downs than the rheumy. There are remi appts where the GI will bring us in and just check over things which wouldn't be possible if remi was moved to rheumy.

C weighed 111 at appt.

 

[Sascot]

Glad things are going well. Hope the Remicade continues to do the trick!

 

[Clash]

There was a young man at the IV lab that had been receiving remicade for 8 years, starting when he was 8 years old. Now at 16, He is 6'1" and 185lbs. Remicade had been his saving grace as no other treatment had worked in the beginning and he spent a lot of time in the hospital. He travels over 5 hours to see the GI group. It was so great to hear such a great success story with remicade! 8 years, how awesome is that!

 

[Tesscorm]

I guess our infusion 'system' works a bit differently - we go to a clinic that's part of a chain. They seem to be privately owned by a medical company and aren't associated with any specific hospital or doctor. So as they are a 'chain', I can easily change S's apptmt from one location to another. They all have nurses and, at least one, doctor in attendance but I don't even know if they only do remicade infusions or if they do other medical treatments as well. Because S goes on his own, I rarely get the opportunity to be there to chat with the nurses or other patients.

And great news about the young man.

 

[Clash]

I think we have those to in the larger metropolitan areas. Our area would be to small and since their is one in the GI office then I've had no reason to look in their area.

My niece had JRA, or at least that is what they dx'ed her with when she was 6, she is in grad school now at a university in a large town and received her remicade treatments at a chain or stand alone IV lab since her doc was in her hometown and hours away. She is on humira now I think so no longer an issue.

 

[kimmidwife]

Clash,
So glad to hear the remi went well. We are also really really struggling with the weight issues.

 

[Clash]

Thanks! I do worry about the weight! All of C's labs came back for vitamins and otherwise. They called the hubby and he didn't ask the numbers but I'm going to pull them of the labs online as soon as C gives me the password. The nurse said the GI was really pleased with C's vitamin levels that they were all solidly normal and even on the high end of normal. So that's good.