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copteacher
Adjunct
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Joined: 08 Jun 2002
Posts: 20588
Location: Teaching in the Halls of Justice
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 Posted: 08/10/04 - 20:40 Post subject: Remicade?-Abby's new treatment option (long)
Is the next step for Abby. I had a long chat (15 plus minutes) with her doctor about what is next.
Over the course of the last few weeks, Abby's bowels have been getting worse and worse. She has been actively bleeding from both her large and small intestine and has been on narcotics every night and regular tylenol during the day.
After her doctor met with his other specialist and consulted Abby's surgeon, they decided that Abby has basically forced their hand into the next course of treatment as treating her symptoms and trying other medical options are not working.
The hopeful solution is Remicade, an IV administered drug that has been successful in adult Bowel disease patients.
The problem is that Remicade is not recommended and or tested use for pediatric patients but CHOP has used it a few times on the young patients with some success. (CHOP has followed 27000 patients with IBD-inflamatory bowel disease, less than 80 have been Abby's age, and Abby was on of the youngest with its intial onset (1.5 years old). None of the other patients CHOP has treated has had other complications and conditions that Abby has.
It is an IV administered drug, that takes two hours to administer. I will be going with her Tuesday as the procedure has already been scheduled.
She will get another dose in two weeks and then some blood work to see how it is working.
A downside, is that Abby may need a central IV line inserted if she needs to have frequent treatments. That is a whole another problem if that we will cross.
So the next few weeks will be important for Abby.
All of the docs are hopeful that this will work as they are running out of options. We have joked with her GI doc that there is a Nobel prize in the works if he is able to cure Abby.
It is times like this that Robin and I lay it all at God's feet. It is the only way have gotten this far as God is in full control.
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JACKED UP
PRESIDENT
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Joined: 06 Jun 2003
Posts: 21238
Location: www.johnnydu.com
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Posted: 08/10/04 - 21:57 Post subject:
Wow, I can't even imagine. Lets hope this works for Abby. Prayers for her, and good luck. 
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jrjo
Gone Fishin
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Joined: 15 May 2002
Posts: 16451
Location: Lake Wobegon, MN
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Posted: 08/10/04 - 23:12 Post subject:
Lots of prayers Joe, lots of prayers.
Here's hoping for that '05 Nobel prize in medicine making it's way to Philly.
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purple hayes
Frightened Inmate #2
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Joined: 14 May 2002
Posts: 14462
Location: ON YOUR LEFT!
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Posted: 08/11/04 - 06:00 Post subject:
Having a new medication available is great, but that's really sucky that it has to be administered that way.
Prayers for Abby.
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brie k
Member
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Joined: 15 May 2002
Posts: 5661
Location: where the wild things are
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Posted: 08/11/04 - 07:00 Post subject:
Prayers for Abby on our end as well.
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rolling rock
The Pinball
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Joined: 15 May 2002
Posts: 16218
Location: unknown zone
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Posted: 08/11/04 - 07:12 Post subject:
prayers for abby and her doctors.
wishing her well, as always.
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GirlWonder
Member
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Joined: 14 Oct 2003
Posts: 47
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Posted: 08/11/04 - 12:51 Post subject:
My younger sister--now 28-- was on Remicade for Crohn's D. a few years back. It did work for a while but then was no longer effective. It sounds like they will be aggressive with Abby as with my sis they only gave it every 6 weeks or so. But then again, I'm not a medical person so perhaps with children they are trying lower doses closer together?
In any case....
I hope everything works out well for Abby.
Take Care
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