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Crohn's Disease Forum » Books, Multimedia, Research & News » Forum Approved Clinical Trials, Research Studies, Surveys and Products » Question on resources and difficulties as your child transition into adult care


02-17-2015, 05:01 PM   #1
howardjen
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Join Date: Feb 2015
Location: Newton, Massachusetts
Question on resources and difficulties as your child transition into adult care

Hi parents,

I am a pediatric surgeon from Boston who on behalf of the American Academy of Pediatric Section on Surgery is interested in talking to some families about their experiences or anticipated needs as their child transition from pediatric specialists to adult medical/surgical care. This is an important topic now as many children are going through this transition and we feel the time is ripe to elevate this issue into the spotlight.
This will be a quick 8-12 question phone survey as a preliminary survey to understand the problem and help to develop future in depth studies and policy statements.

If you are interested to participate, please PM me.

Regards,

Howard Jen

Howard Chung-Hao Jen, MD MSHS
Assistant Professor of Surgery and Pediatrics
Division of Pediatric Surgery at Floating Hospital for Children
Center for Evaluation of Value and Risk in Health
Tufts Medical Center
800 Washington Street, Box #344
Boston, MA 02111
P: 617-636-5025
F: 617-636-8122
[email protected]
02-17-2015, 08:16 PM   #2
Tesscorm
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Join Date: Jun 2011
Location: Ontario

My Support Groups:
I would be happy to answer your questions, however, I believe this type of request must be approved by the forum staff.

I will tag them and I'm sure they'll be along soon.

David, Jennifer, Dusty
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Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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02-17-2015, 08:33 PM   #3
howardjen
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Join Date: Feb 2015
Location: Newton, Massachusetts
Thank you for checking with the staff.
02-18-2015, 05:45 AM   #4
DustyKat
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Location: New South Wales, Australia
Post pending approval.

Admin notified.
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02-20-2015, 02:19 AM   #5
Jennifer
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Posting approved.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-22-2015, 10:02 AM   #6
David
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Location: Naples, Florida
Bumping to hopefully get them some more participants.
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02-22-2015, 07:34 PM   #7
lenny
Senior Member
My son is 18 but we're staying with the pediatric GI for now..
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