10 ur old Daughter just diagnosed

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    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 )  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)

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.

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

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~!!!!

Hello,

She is so young! What insurance do you have?! That seems so high. Its not like it was an elective procedure!