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docdundidit
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/19/2010 1:01 PM (GMT -7)   
HI. I will now formally introduce myself, like recommended.
I am a mother of a 14 yr old daughter diagnosed with Crohn's in March 08. We live in the New Orleans area.
We have struggled like many others ever since with the doctors and medications and diet and missing school and all those in between frustrating days when you just don't know where to turn. Unfortunately, we do not know any other young people/teens locally and that is a very isolating feeling as well.
My daughter's story is typical...tummy aches for months and months. Her Pediatrician ran some in house labs, saw nothing unusual, said it was stress. We went back a couple months later and told the ped that we would like to be referred to a specialist. After 3 mths of test after test, Crohn's was confirmed. It was present in the ileum but mild according to doctor. She started on Imuran and Pentasa. She did well for a while. Gained a little weight, grew a little bit.
A year later she ended up with an NG tube and was on a homebound schooling program. She also had mono about this same time which went undetected for a while. She was not doing well, barely getting out of bed at all. Her doctor became more and more difficult to deal with and she became afraid of him after a bad experience with inserting the 2nd NG tube. After little success with the tube, she lost weight again and continued to get worse.
We recently changed doctors and he found her inflammation levels very high, 'uncontrolled', and upped her Imuran along with a recommendation to start Remicade. At this same time we learned through a stool study that she tested positive for Blastocystis hominis. She was treated last week with Alinia, a 3 day treatment, and she felt really REALLy bad for days. She is starting to feel a little better today and actually had a normal BM.
Since parasites and bacteria love sugar and starches, I am looking more at the scd diet as an option and also giving more probiotics and supplements to help with the healing after this parasite treatment. We re-test stool again in 3 weeks.
I am really interested in meeting other parents of children dealing with this disease.
That was a longer intro than I expected....thanks!

Post Edited (docdundidit) : 1/19/2010 1:06:12 PM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/19/2010 1:07 PM (GMT -7)   
Hi docdundidit and welcome to Healingwell. We have a few parents on here with teenagers so hopefully one of them will be along soon. Just wanted to welcome you to our Crohnie corner of the world.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

docdundidit
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/19/2010 1:15 PM (GMT -7)   
Thank you!
My 14 yr old daughter has Crohn's. Diagnosed March 08. Currently taking Imuran and Pentasa. Also probiotics, Vit D and C supplements, Omega 3, folic acid, calcium.


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/19/2010 1:34 PM (GMT -7)   
I was a teenager with a Crohn's.
I was diagnosed, but I'm pretty sure I became agorophobic because of my guts. It got to the point where I could never tell whether panic brought on diarrhea or diarrhea brought on a panic. I cried after my first colonscopy.
I took my medications religiously. darn near flipped out when I thought I had lost my purse containing my meds at a costco!
Crohn's changed my life. For the next few years, I felt really glad to be alive.
Take a note from my mom, and tell your daughter that she is not alone. And that you will always be there to fight for her and see that she has quality care.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


docdundidit
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/19/2010 1:50 PM (GMT -7)   
Funny you say that gypsyfp....I just told my daughter that (again!) last night.
Thanks...nice to meet you.
My 14 yr old daughter has Crohn's. Diagnosed March 08. Currently taking Imuran and Pentasa. Also probiotics, Vit D and C supplements, Omega 3, folic acid, calcium.

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