My daughter has been diagnosed with a non functioning gallbladder. Her ejection fraction was 30%. She has constant pain all the time but she has just learned to endure. The pain is worse after she eats and it doesnt really matter what she eats.My daughter cries herself to sleep most every night. Her dad's side of the family has gallbladder trouble. No one in his family has a gallbladder but one of her uncles.The doctors put her on actigall and its not helping. I dont understand that because I have been told she has no stones or sludge. I'm not sure what to do. Surgery has not been mentioned and I'm not sure what to do next. Any suggestions?
It doesn't seem fair for a ten year old to have that much trouble. Biliary dyskinesia has become the most common reason for cholecystectomy in the pediatric population. The results have been quite good. Most see resolution of their symptoms.
Thank You for responding. I talked with her doctor today and he has set us up an appointment with a surgery consult on Sept. the 4th. I hope it will be the right thing to do because she is so young but she is tired of the pain too.
How did your appointment go? I read your post and could only wish that my daughter, like yours at age 10, been properly diagnosed. She went YEARS without the correct diagnosis and it wasn't until she was 17 that it was figured out that she had a malfunctioning GB . Her HIDA scan was only 4. She was in severe pain in the hospital for 5 days before they figured out it was her GB .. on Day 6 she had surgery and was home on Day 8. That was many years ago and from the moment she woke up from surgery to today she is a different, pain free person.
Turns out her GB was malformed and dysfunctional from birth. They say it is herditary and shows up in the teen years. The wonderful surgeon said she was his 21st surgery for this condition and asked me when I had mine out since it was herditary .. I stood there and rolled my eyes .. replying .. ummmmm with my next attack out it comes .
We went to see the surgeon and he said she had a 50/50 chance of feeling better if he took out the gallbladder. He also told me that a HIDA scan could have different results if you took it once a week, so you can't always rely on those completely for gallbladder removal. He went ahead and set up her surgery for Oct. 29 since his schedule became very full quickly. He wanted to talk to her GI dr to see if maybe there were more tests that could be done to eliminate something else to keep her from having surgery. i don' t think he saw the tests she had already been through.
A few days later, I called the Gi dr to see if he had talked to the surgeon and to see what our next step would be. The surgeon had not called so I told the GI dr what he said and he decided to do an endoscopy on Sept. 28.
I feel so frustrated with the drs. I feel like we are getting the run around.That is all I know for now.
If I'm not mistaken our GI told us the % of success of surgery oftentimes depends on the HIDA scan results, so in my daughter's case they felt that she had a 96% chance of success since her results were a very low 4.
When they removed her GB they did a scope for the GI while in there, just to be sure nothing else was going on and all was okay.
A 30% ejection fraction is a little borderline. Cholecystectomy would be appropriate if other common things have been ruled out. The endoscopy is a very reasonable thing before committing on the surgery.
Was your daughter's pain reproduced when they gave her the CCK during the HIDA scan? This is usually a good predictor of favorable outcome after gallbladder removal.
She has constant pain that gets worse after eating but never really goes away. She said the pain was a little worse but she did vomit when they gave her the medicine during the scan.
Her dad's gallbladder was gangreous (spelling) when they finally got his out. I just don't want that to happen to her.
My daughter had an egd done and it was normal. The only thing they found was that she has pancreas divisum. The gi dr said that this was not a reason for her hurting and nausea. My question is should we go ahead a have the gallbladder surgery? Not sure. She isn't getting better.
OH my dear...where do I start? I'm sure the fine doctor on this forum will chime in, too, and I hope so,but I very much respect his opinion. He is dead right about the CCK reaction. Mine was ho-hum, I was uncomfortable but I never had any pain in the first place...not on my right side anyway, just nausea (chronic, for months on end) and a stomach cramping that stopped me from eating much food. Bottom line: I was desperate with a 21% ejection fraction GB during HIDA scan and had run every other possible GI test one can imagine (MRIs, CTs, Endoscopy, Colonoscopy- 2 in 2 years!, small bowel follow through, Sonograms, blood tests to rule out parasites and bacterial infection, C. diff, H. Pylori, etc.) But I was also diagnosed with gastritis a year ago and IBS for many years.
Ultimately, despite my concern it wouldn't help me I had GB surgery on July 31 of this year. I'm still sick, but have now added some different symptoms to the mix. My digestive system is a wreck. I still have stomach cramps when I eat something and I now have GERD (along with a near constant burning of my mouth and tongue when I eat anything, sometimes just drinking liquids). No one really knows for sure what's causing this awful burning (and terrible taste as well in my mouth) but theory is GERD (acid or bile reflux) post GB surgery. I did NOT have GERD or any of these symptoms until after the surgery. Within weeks, I might add.
Your precious child is suffering horribly. But I agree with the doctor here. 30% is borderline and someone else said it's possible to get a different result on a HIDA scan on any given day. I still wonder just how non-functional my GB was. The surgeon swore it was diseased and even though I didn't have any stone pain like most people do - they did find a few more 'small' stones when they took it out. Surgeon said it was 'distended' and diseased and needed to come out. He looked elsewhere (this was laproscopically done) to see if anything else looked suspicious and he said 'all was fine.'
Well, I'm NOT fine. And now the surgeon is no longer returning my calls. My GI doc is a sheer God-send and brave man (fighting with politics to help me insurance-wise). We are performing a ph Monitoring and Manometry? test soon to see if there is trouble brewing with my esophagus now...food is backing up and I'm having trouble swallowing - another little gift post gall bladder surgery. Beyond that is a SmartPill endoscopy drop - to check small bowel issues. If this doesn't give us some type of diagnosis I guess I'll just keep begging and pleading and move on to my THIRD GI doc. It's enough to make one live inside a psychiatrist's office (where I'm bound soon). Whoever said that gb surgery is a no brainer needs to have their brains examined. It is FAR from an easy out...
I do hope for your daughter's sake that it is NOT her gall bladder causing this. I urge you to continue with a battery of tests before you yank this very, very, very important organ from her very precious body. Despite how this runs in the family.
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