Treatment Clubs?

[DustyKat]

Just putting an idea out there for treatment clubs (threads).

I would appreciate thoughts on whether you all think it would be worthwhile starting threads that specifically deal with the different treatments. I was thinking of perhaps starting with Remicade and gauge the response and then go from there.

Of course these forums exist on the wider forum but I was wondering if something directed to paediatrics and parent's experiences would be useful. I would wish for you to have continued discussion within your own threads and the aim of these threads would be for more specific information and experiences. That way new comers or existing members have an informative resource to refer to.

Thanks,
Dusty.

 

[my little penguin]

Love the idea

 

[Crohn's Mom]

I was thinking the same thing the other day - great idea Dusty!

 

[kimmidwife]

Fantastic idea Dusty!

 

[DustyKat]

Thanks guys.

Now I was thinking of setting up an outline of questions to get help gather a base of information and get the ball rolling. These could then be used as a guideline for future treatment threads. Please give feedback on what you think:

1. Why was your child prescribed Remicade?

2. What dose and regime was prescribed?

3. Has the dose been changed over time and why?

4. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

5. How long does the infusion last?

6. Are there any preparations that need to be made?

7. What does your child do when they being infused?

8. Can you be infused if you are unwell or have an infection?

9. Did Remicade work for your child and how long was it prescribed for?

10. If it didn't work or treatment has been discontinued why is that?

11. How is the cost of the infusion covered?

11. Any other tips or information?

As I said these are just information gathering questions for those of you that can provide answers and will not be the structure of the thread. I have likely missed a heap of good questions so please add what you think others would like to know and for those that are just starting out what you would like to know.

When the thread is set up I will write an intro and list the final draft of questions as a guide to a way of presenting information for those that can answer them.

Thanks,
Dusty.

 

[Jim Gonsler]

I think that sharing all methods of treatment success stories would be great!
I have used both prescription drugs and natural supplements. Been on Asacol and Asulfadine but try to stay away from anything stronger due to their adverse effect on my immune system. I prefer supplements because of their little or no side effects. All treatments aren't right for all people but encouragement works everytime. Thanks,
Jim

 

[Stressed Mom]

Oh my gosh that would be terrific!!!! I always debate on where to post certain concerns or questions I have because they could be surgery, could be under parents of Kids, could be general discussion, could be..... you get the idea lol. Then youself or another wonderful member have to link me as to where to go to read about these issues.

What a fantastic idea Dusty thank you for doing this :hug:

 

[kimmidwife]

Sounds like good questions Dusty. I could not think of any other at the moment.

 

[Crohn's Mom]

Great questions ! I can't seem to think of any others at the moment.

I don't dare answer them as we are in the lone child on Cimzia club :lol:

I'll be glad to have this thread tho in case we ever need it

 

[AZMOM]

Fab idea!

J.

 

[Farmwife]

Dear Crohn's Mom,

Don't think of yourself as the "lone" member of the Cimzia club.:hug:

Instead think of yourself as the pioneer.

 

[Tesscorm]

Thanks Dusty!! Great idea!!!

I have another question(s) - How is the treatment monitored for success? Ie what tests and how often. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction.

 

[DustyKat]

I will work on this soon and get it up and running.

I think I will start by making a stickied thread titled Treatment Clubs.

Then make a thread titled Remicade Club and create a link via the sticky.

As each new club thread is formed it will link via the sticky for easy search and retrieval of the thread.

That makes sense to me so I hope it does to you! :lol:

Dusty.

 

[crohnsinct]

Looks like you covered it to me. If I think of anything I will let you know.

I think a treatement section for kids is great because as our doc explains children are not little adults and are treated and respond to treatment much different.

Thabks for all your hard work on this...you must be all done with your holiday prep eh?