I sure can understand your concern when doctors are so divergent in their opinions. Where are you located? Can you contact your husband's doctors to get a referral to a pediatric GI specializing in FAP, so you can get a proper second opinion? 

 

Plus, having an ileostomy is not her only option. She should qualify for a j-pouch and only need a temporary ileostomy.

 

Soon, others with FAP insight will be coming along. My experience is with IBD, so I am not much help.

 

Jan

She sees the gastro peds here in Spokane wa.  Dads surgeon won't touch her cause she's under 14.  She is in so much pain.   I feel so bad for her

I have FAP and have a 3 year old that was diagnosed shortly after birth with FAP as well. There are routine checks they perform on her. They do a Colonoscopy every 6 months and monitor for polyps. As long as the polyps are not too big and the biopsies come back with low to no grade of dysplasia she does not need her colon out yet. It is a watch and see approach,  but needs to be Biopsied yearly to make sure that the polyps are not becoming cancerous. I had thousands of polyps before they removed my colon and it still came back with no cancer. As long as they are monitoring her closely I would see no need for a colectomy just yet. I am also from spokane wa and could recommend a team of great doctors that work together on my daughter. We have some of the best GI specialists this side of the country and the best colorectal surgeon in the western US.

Oh wow thank you.  We see a Dr  At the pediatric gastro clinic at sacred heart.   He refuses to do colonoscopy on my 3yo.  But this is my 9 yos second. Do u use the same clinic?  Any help would be awesome. I'm stuck between two opinions. And don't know which way to go.  Thank you

I would start with Monica Zherebstov (Cheer eb stof) she also works for providence pediatric GI in Sacred hearts doctors building. She is very thorough and great with kids. She has quite a few patients with FAP and has studied my daughter's case extensively and due to her finding polyps in her duodenum at 2 yrs old she now has adjusted her protocol for screening on FAP kids. I have never been so fond of a doctor. She will be able to console your daughter and help her understand what lies ahead health wise for her as well. She will recommend any further specialists your daughter may need to see as well. I would start with her first and she will point you in the right direction. We have been through a few GI docs and she is the only one I do not second guess. You will understand why when you meet with her! Her phone number is 5094745437.

I was diagnosed at 14. Didn't get my surgery until I was 29! They just kept scoping annually. I had my J-Pouch surgery at UCLA in 1 step. No need to an Ileostomy!!! If you wait to have surgery too long (after cancer rears it's ugly head) then a 1-step procedure is out of the question. It is a fine line you have to walk. My daughter was 21 when she had her surgery a year ago and it was 1-Step as well and Laparoscopically! Much less invasive than my surgery. Talk with your GI Dr. Ask questions about how advanced the polyps are and 'what if' you wait for a year... 2 years....etc.

Good Luck!