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Gall Bladder

 
 
efreyer
 
Reply Fri 8 Apr, 2016 10:21 pm
My 11 year old son has been dealing with illness for 5 weeks now including extreme fatigue (up to 22.5 hour out of 24), no appetite, pain in forehead and back of neck, joint pain, and abdominal pain. He has had five rounds of bloodwork from general CBC, liver function, mono and CMV virus screening, lyme testing, lypase/amylase, thyroid testing...and was admitted to the hospital for further evaluations with a guarantee of an answer from his doctor. We were there for 3 days and during that time he had an mri of the brain and ultrasound of his abdomen. MRI was normal but ultrasound showed that his gall bladder was very small. This aligned with his bilirubin counts being elevated for the weeks leading up to the hospitalization. Doctors said they believe head is migraines and he was put on the common magnesium and riboflavin supplementation. They tried to convince me that the gall bladder is Gilbert's Syndrome and said it is a genetic condition from the mother's side. Thing is there is no history of that. Also they implied that he had jaundice as a baby and at times throughout his life this far which is absolutely not the case. He is diagnosed on the spectrum, has adhd, sensory integration disorder as well as anxiety. He has lost 10 lbs over the last month and after the weight loss he was at 100 lbs spread over his almost 5'6" height now. He is so incredibly thin everywhere and his bones ( elbows, shoulders, spine, etc) are grossly showing at this point. He basically is refusing to eat saying he is not hungry. He will drink meal replacement shakes but that is not enough to keep weight on his ever growing frame. He is supposed to be scheduled for a HIDA scan sometime over the next month but am very concerned about the already deterioration over the last month. The follow-up with the GI doc is not until May 12th. When he eats greasy food the whites of his eyes yellow. Please offer up any insight or recommendations you may have. Thank you in advance!
 
jespah
 
  2  
Reply Sat 9 Apr, 2016 06:43 am
@efreyer,
Take him to a gastroenterologist.
bobsal u1553115
 
  1  
Reply Sat 9 Apr, 2016 06:49 am
The gall bladder is minor compared to everything else this poor kid is going through.
efreyer
 
  1  
Reply Sat 9 Apr, 2016 09:03 pm
@jespah,
He has seen gastroenterologist already. That is how we found the gall bladder concern.
glitterbag
 
  1  
Reply Sat 9 Apr, 2016 09:07 pm
@efreyer,
Take him to another GI for a second opinion.
0 Replies
 
efreyer
 
  2  
Reply Sat 9 Apr, 2016 09:08 pm
@bobsal u1553115,
They have been unable to come up with an explanation to any of it. If it weren't for the white blood cell count being low and bilirubin being elevated nothing else is visible to them to suggest anything being wrong. So, you should understand my extreme frustration and concern.
0 Replies
 
efreyer
 
  3  
Reply Sat 9 Apr, 2016 09:17 pm
He was on a boy scout trip weekend about 2 weeks prior to all of this starting. Feared something related to tick borne illnesses knowing we have had a mild winter in cny. That is why he was tested for lyme disease. The result was negative but others have told me that a negative result is possible even if you do have it. Has anyone heard of this happening. All of the symptoms with the exception of the gall bladder could be explained by an illness of this nature.
jespah
 
  2  
Reply Sun 10 Apr, 2016 07:49 am
@efreyer,
Don't know, but if you suspect this, then take him to an immunologist.
0 Replies
 
 

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