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.

[prattbrat]

My 6 year old daughter has had the exact same symptoms.  Doubling over in pain, crying, diarrhea, nausea.  We went through all of the "loops" as well.  HIDA scan revealed and ejection fraction of less than 30%.  We decided it would be best for her to have her gallbladder taken out as gallbladder disease runs in our family.  We were hesitant with her being so very young, however.  Since the surgery, she has had NO pain!  She is a new child.  Pathology showed signs of chronic inflammation and sludge.  This was a true diagnosis and surgery was definitely the way to go for her!

[brycenkenz]

Hi again, I forgot to add 1 thing. I myself have diarrhea everyday and sometimes several times a day.I have actually had this problem before i had the BD.Im not sure but i believe these are two seperate issues, but they definatley affect one another. I have read recently that irratable bowel syndrome and other intestinal diseases can play apart i BD. You would imagine that a child experiecing this much pain and upset stomach would lose weight etc.. it is a horrible thing. I lost 35 lbs from it before i learned all the stuff to help prevent the attacks.I do still have the everyday diahrrea but i am scheduled for a colonoscopy to see if there is anything going on, but i have been able to maintain my weight.

[brycenkenz]

Hello there, first i would like to say is i deeply sympathize for your family and your poor son.Biliary Dsykinesia is a awful painful thing to go through. I have had these awful pains for 7 years in and out of the emergency rooms and i finally thought i had the answer.I was camping one night and i experienced the worse pains in my stomach in back i thought i was gonna die. I went to the ER that night and he told me he thought i had gallstones.So i went to see my surgeon, and had me get a ultrasound and in fact i did have stones. I was never so happy that after almost 8 years i could be free of this evil pain. Wrong, i had surgery and the day i came home from the hospital i had an attack again. It was a really bad one. I called the surgeon immediately and he had me come in. This is when he said i have biliary dsykinesia aka sphincter of the oddi dsyfunction. He told me that i would have to go an hour away from home to madison hospital and see a surgeon there.At this point im willing to do anything.This surgery does not have a high success rate. If your son has tried anti-spasmatic meds such as bentyl and he responds well to them meaning they help with the symptoms then he would have a better chance at the surgery being successful. If the he is like me and the medication does nothing for you, then the surgery hold about a 30% success rate as far as completley taking away symptoms.Another thind this surgery has a high risk of is pancretitis. This can cause you to be hospitalized in severe pain for several days ,weeks to even months. I myself have children and a working husband, and cannot risk that happening to me.I do not highly recommend the surgery due to it being such a low success rate,unless of course the anti spasmatic meds work for your son.Quickly im sure you may know this but just in case you do not, what is happening to your son and what is causing the severe pain is pressure builds up in the bile duct and causes the muscle to spasm and that is what causes the pain.When they perform the surgery, they insert a guage into the bile duct which will measure the pressure, if it is too high the with make a cut unto the muscle to releave the pressure which of course should relieve the pain. Ok now considering i have been advised not to have the surgery, and i myself after talking to the surgeon decided it would not be worth it.I have done alot of research and have learned ways to prevent and take away the attacks.The best thing is preventing them, because 1 min of the pain seems like and hour. I would first start with eliminating all beef .No more hamburgers etc....The pain was so bad that it was not hard for me to stop eating it and never did i cheat because i knew the consequences.This alone will help 90% of the problem.I have not eaten beef in 5 years and since i have not had an attack that made me call the ambulance.He can have pork, chicken , fish, etc...., anything but beef. I am amazed i can eat 1/2 pack of bacon but i cannot have  one hamburger.Also stay away from gassy drinks such as alot of soda.Try to limit the ice cream.They say ice cream is thee absolute worse thing you can have.Why, because cold things can strigger the spasms, and ice cream is very high in fat.Now i was told make sure when i get something at the store it is low in fat.So 5 years ago i was at the gastation and i seen a beef jery that was low fat.LOL biggg mistake, after eating that i took a trip into the ambulance,and the pain lasted about 3 hours until the pain medication finally made me just pass out.This is the worse thing about these attacks and why it is very important to prevent them.Once you get them you never know how long its going to last.I never know should i wait or head to the hospital.It is so sad that your boy so young has to work around such a painful thing.Another thing he can do if he starts feeling one come on is get a room temp big glass of water and drink it very slowly while he paces.Or he can get a can of pepsi, and some soda crackers and have it drink the pespi and try burping up as much gas as he can and see the crackers and the water help dilute the bile which then will relieve and then take away the attack.And it is imrtant no matter how bad the pain that he keep pacing or walking which that and the pepsi help relieve the gas buble that may be there or that could of played a factor in the trigger of thee attack.pepsi is a good thing to keep in the house and to drink only when he devolps sympotoms.I could be wrong on why this is happening but i believe it has something do do with gas build up in the intestine, but it is for sure the pressure in the bile duct that causes the pain and it is important to get it diluted as soon as possible.Make sure as your son gets older to let him know that alchol will trigger these attacks at its worse, and so does smoking.I know smoking and drinking heavily is bad period, but this will cause these attacks to get severe and uncontrolled if he does.I know cause i am a smoker and i used to be a drinker.Also i was on pain meds and this also would trigger the attacks.There are certain things that make the bile stronger and the pressure worsen and i believe this is why we get these attacks. So if your son has not had the anti spasmatic meds such as bentyl. I would suggest he gets on this medication with the dr apporval of course, because this will not hurt him if anything it will help a bit.I am really serious on the beef issue.Beef is the biggest cause to my attacks, and i assure you that it will help, if in fact this is what he has is BD.Please if you would let me know if this help as it could be a big help in others cases if some of these things help your son.Good Luck!! Thank you for sharing your story.

[CalGal]

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

[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?!

[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]

Anyone?