10 ur old Daughter just diagnosed

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MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/10/2009 2:40 PM (GMT -7)   
Hi everyone
I am new here and looking for support and information on Crohn's. My 10 yr old daughter was diagnosed last month and is currently on Prednisone and Asacol. Her official diagnosis is "Ulcerative colitis LIKE Crohn's"  She started on 30 mg Prednisone and is now down to 10 mg. Poor thing has a puffy face and is eating like a football player. Hopefully these will go away once she is off the Pred in 10 days.
She is also taking 2400 mg of Asacol and has responded REALLY well to it.  Holy cow that stuff is expensive. Until we meet a $500 brand name deductible, we have to pay for it out of pocket and one month is $255.00 smhair    Her doctor wants her to start on 6-MP and my mother's intuition is telling me NOT to start this drug.  Does anyone have any advice?  Her symptoms  begain the week before Thanksgiving and she had a colonoscopy/endoscopy on December 10th (hey, it is our 1 month anniversary turn )  Could it be possible that since we got such a quick diagnosis and treatment that she has a mild case and not much damage was done and she can only take Asacol?  Her Dr said there is an 80% chance she will have another major flare up and the 6-MP will prevent that.  Well....that leaves a 20% chance that she WON'T have a flare up and who knows what will happen? It's not like she has a history of Crohn's and we can predict her symptoms.  I'm so confused.  I welcome and advice, suggestions or support!  Does anyone know of a way to get Asacol for cheaper?  We were supposed to take Lialda but the pill was too big for her to swallow...the DR gave us a card that made our payment $25 but no such luck with Asacol.
 
ALSO I just got the bill for the colon/endoscopy and it was $18,000!  Our out of pocket is around $4000 but it just seems WRONG to me!!  Does it sound right to you? We went to Cedar's Sinai in Los Angeles.  I asked for an itemized statement and should receive it soon.  Why on earth would it cost so much??
Thanks in advance!

Post Edited (MustLoveDogs) : 1/10/2009 2:46:55 PM (GMT-7)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/10/2009 4:39 PM (GMT -7)   
Hi and welcome to Healing Well .Yes your daughter should loose the puffiness when she gets off the pred. As far as how mild her case is only her Dr. would be able to tell you that from her scope results. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/10/2009 5:18 PM (GMT -7)   
Welcome MustLoveDogs! Your situation sounds quite a bit like ours did at the beginning. Feel free to email me personally if you'd like by clicking on the little yellow envelope under my name, and we can exchange stories. I had the same "mother's intuition" that you describe, too, and I'm thankful I listened to myself. smilewinkgrin
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/11/2009 12:18 AM (GMT 0)   
The Dr said her disease is a 6 on scale 1-10, 10 being most disease

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/10/2009 6:33 PM (GMT -7)   
Wow,that seems ridicuously high!! But,my friends daughter "just" had endo,and not the colon and it was a few thousand ouch!!!  As a Mom and a Peds nurse,I truly believe in Mom's intuition,maybe you could see how it goes on the Asacol,and hope for the best,I have heard that kids do well on 6mp,but I see your point. Can I ask what your daughters symptoms were at first??  My almost 9 year old goes to see a GI on Monday,about a year complains on and off of "stomach hurting,then a few weeks ago,he had cramping,and some bloody stools,but there was also a virus going around here.His blood work was all normal,but sed rate was elevated at 18,not terible,but still elevated. So,hoping for the best,and best of luck with your little girl wink

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/10/2009 7:57 PM (GMT -7)   
Lynn
My daughter had vague stomach aches for 6 months or so before she had her first Ulcerative Colitis flare. Nothing major, we thought maybe she was lactose intolerant. We tried to track the stomach aches but there was no pattern. The week of Thanksgiving she was really, really sick - bloody stools, stomach pain, vomiting, cramping..pretty much every GI symptom you can have! She was very tired in the months before her flare. I hope your son doesn't have Crohn's & you find out what the problem is! Good luck

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/11/2009 4:50 AM (GMT -7)   
thanks,we go Monday morning to the Peds GI,so keeping my fingers crossed. My GI and my son's Pediatrician said since I have IBD,he has a 8% higher chance.Aggghhh~!!!! turn

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/11/2009 6:05 PM (GMT 0)   
I am a Crohnie who does well on just Asacol and have been using it for years now. I tried to stop it after my last resection and ended up getting sick again. If she is doing well on just this minor med after she gets off the Pred, I would stick to just keeping her on that if you can. I am trying to avoid the stronger meds if I can too. Sorry about the high co-pays, thats one reason I have a HMO, much cheaper. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/11/2009 12:08 PM (GMT -7)   
Hello,

She is so young! What insurance do you have?! That seems so high. Its not like it was an elective procedure!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


David J
New Member


Date Joined Sep 2004
Total Posts : 15
   Posted 1/11/2009 6:43 PM (GMT -7)   
Dogs-

My Crohn's diagnosis sounds a lot like your daughters. My parents thought I was lactose intolerant also. After a week in the hospital, I was diagnosed with Crohn's in '92 at the age of 10. I was immediately started on prednisone and others. 5th grade is not fun with 'moon' face. I have the school pics to prove it. I am 26 now with a wife and two kids. I am lucky to have a very mild case. No surgeries. We have just been treating my symptoms with meds. Just reassure your daughter that she is not alone. We all here know what she is going through. Plus the internet has so much info on Crohn's and treatment options. As you probably already know....just hang in there.

David
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