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Crohn's Disease Forum » Parents of Kids with IBD » Must Read Valuable Resources for Parents


04-26-2012, 04:47 PM   #1
DustyKat
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Location: New South Wales, Australia
Must Read Valuable Resources for Parents

IBD and Children - Helpful Links
This is an area to post any links or information you think may be of interest to parent's/carer's relating to IBD in general or more specifically to IBD and children.

The Emotional Needs Of A Child With Crohns
This is a place where parent's, carer's or other forum members can post links related to the emotional needs of children with Crohns. It is also a place to discuss your child's emotional needs or how to approach discussing their disease with them.

School/College/University & IBD
This is a place to provide information and discuss issues faced by parent's/carer's and children as they navigate the education system.

Books
This is an area to post links or to discuss any books that you have read that relate to IBD whether they be non fiction or fiction.

Success Stories
Please post your success stories here...It doesn't just have to be about time..the length of a remission, it can be about a successful surgery, the Remicade infusions going smoothly, the Humira injections being a breeze, the EN doing the trick...
It's about letting other parent's know that things can and do return to normal, they are new normal but normal just the same. That treatments, procedures and surgeries can be successful and uneventful. That at the end of the darkest days there is indeed love, laughter, light and life.
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Mum of 2 kids with Crohn's.
11-03-2013, 09:45 PM   #2
armen
 
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Regarding resources, parents should sometimes little push their doctors because in a study, published in May 17, 2011 issue of EmaxHealth many gastroenterologists are unaware of appropriate immunizations for IBD patients. Thus, if you visit your doctor next time, ask him/her if your doctor is up to date on the issue. Study is covery by Dr. Ramona Bates and since this forum limits links, go to EmaxHealth and search this title, "Study finds Many Gastroenterologists Unaware of Appropriate Immunizations for IBD Patients”…

Link Added:

http://www.emaxhealth.com/1024/study...s-ibd-patients

Last edited by DustyKat; 11-04-2013 at 05:17 AM. Reason: Link Added
11-03-2013, 09:58 PM   #3
Tesscorm
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Very good point!! My son started remicade this past February and while his GI 'may' have asked about past immunizations, he certainly didn't recommend checking if his immunity was at appropriate levels. Then, my son had a grad trip to Domican Republic in July, as a precaution (at my insistence, not the GI's suggestion), I went to a 'travel' doctor to check re hepatitis, etc. prior to his trip This doctor chose to also test for immunity levels of measles, mumps, rubella, etc. (not a test to check if he had the diseases, the test was to see if he had immunity to the diseases) and we found out that he does not have full immunity to mumps. Unfortunately, now that he is on remicade, he can not have the MMR vaccine as it is a live vaccine (even though he did have all the appropriate vaccinations as a child). Had I known that not everyone develops full immunity from the typical vaccinations, I would have had him test BEFORE starting remicade and boosting any that were necessary.
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Tess, mom to S, 22
Diagnosed May 2011

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
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
11-03-2013, 10:02 PM   #4
armen
 
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Thank you Tesscorm, I hope you son is doing better now. Best wishes to all of you.
12-05-2017, 08:03 PM   #5
crohnsinct
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Location: California

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IBD & ME

Good explanation of meds, risks and a handy decision tree at the end. Of course make all decisions with your physician's input but handy none the less.

https://ibdandme.org/#
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
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