Biliary/Gallbladder Dyskinesia (pediatric)

[kands]

My four year old was recently diagnosed with biliary dyskinesia after a CCK-HIDA scan revealed his gallbladder ejection fraction to be low, at 30%.  Unfortunately, our GI specialist has never dealt with this before in a patient so young, and thus, we have yet to come up with a plan of action.  My child's symptoms are not necessarily typical--he has abdominal pain on an almost daily basis, and has had diarrhea (up to 10 times a day) since he was three weeks old.  He has been tested for everything under the sun, literally (endoscopies, colonoscopies, genetic testing for celiac, crohn's, colitis, ultrasounds [one of which showed gallstones, the nest which was five days later, showed normal anatomy], allergy testing, countless stool cultures, bloodwork, etc).

I am just looking for personal stories about dealing with this, and am wondering what your treatment options are.  Our GI mentioned acupuncture and Actigall, but did not say anything about ERCP or lap choly.

[kands]

Anyone?

[lisa6013]

Oh dear.... your poor child!  Also poor you!  I know how helpless you must feel as I have a nine year old son.... I don't know anything about his problems, but have you had a second opinion?  I sure would do that if you haven't.  Also I know that sometimes when folks have an ailment and search online for info, they find articles or information that are written by certain doctors that are experts in that condition.  If you find such info, see who is writing about it, and contact them.... sorry I really couldn't help......  :(  Sending prayers your way!!

lisa :)

[kands]

I have taken my son to at least three different GI specialists, most of whom didn't take me seriously because my son is at the top of the weight charts, and they figured if it was truly serious, he'd be losing weight or failure to thrive.  

The GI we currently have is fantastic and I don't feel the need for a second opinion on this issue only because I know he is talking to his colleagues about it and they truly work as a team.  If, however, I can find a pedi GI who specializes in this illness, then I will definitely take my son for a second opinion.  I just feel like it is pointless to take him to another GI who has no experience with it, you know?

In the meantime, I am questioning the diagnosis as his major symptoms are diarrhea and abdominal pain.  He has never thrown up in his life and isn't nausea one of the hallmark signs of gallbladder disease?!

[CalGal]

Not everyone with gallbladder issues throws up. GB symptoms can vary between individuals.