IL conference-- what did you learn?

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inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 3/29/2008 1:31 PM (GMT -7)   
I thought this year's conference had even better presenters than before. One thing I had never heard before was that remicade babies should not get the rotovirus vaccine until after 6mos b/c they are immuno suppressed like mom from 3d trimester infusion. Makes sense, but I had never heard that one before.

What did you guys learn?
Currently in remission!


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 3/31/2008 5:40 PM (GMT -7)   
I thought others attended, but I guess I'll share more of what I learned at the IL CCFA patient conference.

A couple other neat things:
- Studies on fish oil really show it working in CD (not in UC yet). You have to take a lot of capsules and the ones that dissolve in your intestines (coated ones) work best
- So far probiotics are actually shown to work in UC, but the results aren't there for CD yet
- Temporarily switching to Boost/Ensure type diet actually has clinical benefits and can help induce remission (I always thought they were just good for putting on weight, adding nutrition or giving the gut a rest). Even if you can't stand the drinks alone for 6-8 weeks, using them as a supplement helps too
- The rule of thirds for pregnancy in CD only applies when you are not in remission when you get pregnant. Your odds are even better if you are in remission
- BUT women with CD do have a higher risk of low birth weight and early babies (33-36 weeks)

These are just the most interesting things that come to mind. Maybe others who attended will come along and share.
Currently in remission!


Barbz
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Date Joined Jun 2005
Total Posts : 848
   Posted 3/31/2008 6:50 PM (GMT -7)   
I went to Chicago and it was nice. I wish I would have learned more but I guess I study alot so maybe that is why I feel I did not learn alot. I wish I would have met some of you from this website up there. You was not in the class that the man passed out was you ? I was in that class and they moved us down to the lunch area. Did you take the class on Medications? If so what did you think of the new medicine that they was talking about that in trial it caused a few people Brain mush. I could not even believe that one. I told my mother in law right then the doctors will never put  me on that one. I will try Humaira but i will not try that one for nothing!! Ok enough rambling i better go i will talk to ya later, Barb

inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 3/31/2008 8:44 PM (GMT -7)   
I wasn't in that class, I had no idea that's why they moved it. I did go to a medication one, but it had a different lecturer. She covered the basics that anyone who would read this site would know. The genetics session was a waste of time too, but I liked the "Female Factor" class, the Integrative one and the part I caught of the extraintestinal session.

Like you, I didn't learn much the last time I went. I think it is all luck of the draw in who leads the sessions. Some people spend the whole time on what IBD is. Well, if we didn't know we wouldn't be there. The best sessions are the ones that jump into the new research. You can't tell from the brochure which one those will be.
Currently in remission!


Barbz
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Date Joined Jun 2005
Total Posts : 848
   Posted 4/1/2008 5:31 AM (GMT -7)   
I really did have a good time though. I wish i would have got to meet you. Where do you live ? I am from a little town right next to St. Louis. about 5 hours from Chicago. Im going back to this little town in a couple of weeks called Tuscola we stopped there on the way home at these outlet malls and it was nice but i want to see the historical part of the town when they are open. anyway Im glad you had fun it was really worth it. Barb

chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/1/2008 8:28 AM (GMT -7)   
Hey Barbz, do you remember the name of that med that caused brain mush? I just would like to know, so if it does make it to market that I will know not to take it!

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 848
   Posted 4/1/2008 10:26 AM (GMT -7)   
oh goodness I do believe they said they are using it now and the name sounded something like Tysavrey or Tisafrid something like that. I would have asked the doctor but that is the class that this man passed out in the middle of and they was taking care of him and then we had to move rooms and the class time ran way over. I was hoping if we do a search we might find it. If you do would you let me know and if i find the proper name and spelling i will let you know. Thank you. Barb

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 848
   Posted 4/1/2008 10:32 AM (GMT -7)   
OH OH OH wait i just found the name it is on my papers. Natalizumab (Tysabri) and under it says Recently approved with restrictions, Risks: PML
Progressive multifocal leukoencephalopathy
Fatal brain infection
One case per 1000 subjects treated for 18 months.
let me know if you find anything elce about it would you ?? Like i said the class was kind of a mess at this point. good luck with your search and i will try finding something elce about it. Barb
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