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08-21-2016, 10:37 PM   #1
LostInNY
 
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Update

So, my son had the endoscopic ultrasound and he does not have a tumor in his stomach. However, his liver is enlarged and is compressing into the stomach wall. As of right now the GI has no plan of action! My son has lost a ton of weight and can hardly eat. The whole time he was on humira his blood test for hep b surface antibodies were positive, but I was told this was normal because of the humira. I have 3 different opinions from separate facilities all came back enlarged liver, and the dr hasn't addressed his kidney yet! I am so mad and do not know what to do. If I switch dr's it will take a bit before the new dr will even have a plan for his liver. I really do not know what to do. Anyone with any advice? What do I do?
08-21-2016, 10:46 PM   #2
my little penguin
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Can you schedule an a appt woth a nephrologist?
They handle kidneys and can at least give you a plan for that quickly .
Has your child had a second opinion after all these tests from Gi and nephrology at the second place ?
While your waiting for your gi plan ... You could try to get a second opinion at the same time - someone at the same place or a new place .
Not understanding the hep b antibodies being tested ?
Humira can cause liver issues as can Ibd as can kidney problems
Never had to have a hep b antibody test - what start the need for that test
Were his liver enzymes high ?
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08-21-2016, 10:54 PM   #3
LostInNY
 
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The hep B antibodies were positive. The dr checked this routinely as part of blood work up, he is no longer on humira, but retesting for hep b again. I was told the hep b will be positive because he was on humira and had a vaccine as a baby. The dr hasn't even addressed his kidney! I'm so upset, I brought it up on Friday and he said he would get to that after we spoke of the liver, but never returned to the kidney. The GI is the chief of pediatric gastroenterology, I decided the adult GI was a bit clueless with so many issues. There has been a question of Ankylosing Spondylitis due to +HLA b27 gene. I'm just really scared about his enlarged liver, this is really bad and I feel the health care system failing at the worst time ever. Usually the dr has been aggressive, but is treating this as a sprained ankle. I don't know what to do.
08-21-2016, 10:58 PM   #4
LostInNY
 
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My son is off humira over a year now. I don't know why liver is so large it is compressing stomach wall. I feel so alone. The dr's seem worthless and I never have been treated like this by any of his dr's I don't know what is going on.
08-21-2016, 11:04 PM   #5
ronroush7
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I agree with my little penguin about a second opinion even if it is someone in the same practice.
08-21-2016, 11:53 PM   #6
CrohnsDadNJ
 
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LostInNY, I know its tough to not feel frustrated or angry. But our kids depend on us being the calm, collected and rational ones. I am no doctor, but an enlarged liver is a very treatable condition. It is also a side effect of anti TNFs. Your best bet, as others have said, is to seek a second opinion. If you are close to the NYC area, I would highly recommend the team at Columbia/Children's Hospital of New York. Start with a pediatric GI there, they work closely with other pediatric specialists who have experience with IBD. If you are in NJ, try the Hackensack UMC or the Morristown Atlantic Health pediatric GI teams. Best of luck!
08-22-2016, 04:30 AM   #7
my little penguin
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The head of Gi doesn't necessarily equal the best Gi for your kiddo .
The Gi who listens to your child (adult) and allows you to participate in the treatment.
Adult Gi typically do not take the family discussion approach you get with Ped Gi but since your kiddo is over 18 that makes things harder to get into a kiddie Gi at this point .
As for AS that is determined by imaging ( MRI and X-ray ) if there's damage then AS regardless of the hla b27 gene .
The hla b27 gene is extremely common in males with pediatric onset Ibd as well as JSpA
It's not really dx of anything only the a child with JSpA needs to be watched closer for possible AS later .
Ds has both JSpA and hla b 27 positive .

There are Gi who specialize in livers - find one of those
Bch will do a records review not sure if they would still see him but they might
Also check out CHOP/CHP/CCMC doesn't hurt to call and explain

If your child had the hep b vaccine as a baby then he should have antibodies regardless of humira
Any vaccine causes antibodies to be built
08-22-2016, 04:48 AM   #8
LostInNY
 
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My son is still 17 and is back with the pediatric GI, I plan on contacting a hepatologist today and hope to have a liver biopsy done this week. I looked into something called a Fibroscan, but the biopsy is more accurate. My son has a pcp so it's difficult to go out of the group she is affiliated with, without starting over. He has sPA and positive hep b antibodies. The dr's are all the same and it's so frustrating, I've been to the best and the worst. An enlarged liver is a serious health issue, I think all of this needed to be taking care of last week, this is outrageous. I appreciate your advice and believe me I've done it all and have gone down the roster of specialist. I'm thinking a trip to John Hopkins is the best chance my son has atm.
08-22-2016, 05:29 AM   #9
DustyKat
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@mlp, did your lad not have Hep B surface antibodies done before commencing biologics?

@LostInNY, it is not uncommon to have Hep B surface antibodies done before commencing biologics. They are looking for the same thing as when they test for TB, evidence of prior exposure to the virus, outside of immunisation, because biologics have the potential to reactivate the virus again.
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08-22-2016, 07:23 AM   #10
LostInNY
 
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My son NEVER had TB or HEP B before HUMIRA due to his immune system being compromised he acquired latent TB. When he was a baby he had immunization for Hep B because of biologic therapy it made the antibodies show as positive HEP B. Humira makes you more prone to pick up viruses, illness, etc. because of the affect it has on your body. My son got TB from being on HUMIRA and if anyone has a dr that is telling you otherwise please call the fda and cdc because the dr needs to be reported.
08-22-2016, 07:56 AM   #11
xmdmom
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To clarify (and I apologize if you explained this already), does your son have Hepatitis antigens and antibodies that show active hep B infection?

This document has a table that shows the meaning of different antibody antigen combinations.

I am so sorry that you and your son are going through this. Hoping you get some answers soon.
08-22-2016, 09:32 AM   #12
my little penguin
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Dusty
Never tested for hep b surface antibodies
But Ds received all three immunizations
Hep A B and C as an infant and toddler
Since there have been too many outbreaks in the US from resturant food

Recent recall this week on scallops for hep B across the US
08-22-2016, 09:37 AM   #13
my little penguin
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My daughter was immunized against hepatitis B about 4 years ago. She was recently found "hepatitis B positive" by her gynecologist. Is this possible? Could it be a false positive?
It is possible, but unlikely. The hepatitis B surface antigen (HBsAg) test has high sensitivity and specificity and is quite trustworthy. She might have already been HBsAg positive when she was vaccinated so the vaccine would not have been effective. You should make sure that the positive test was actually HBsAg and not another hepatitis B test, such as anti-HBs (sometimes confusingly referred to as HBsAB) or another test called total hepatitis B core antibody (total anti-HBc). A positive anti-HBs test is expected after vaccination with hepatitis B vaccine, but not a positive total anti-HBc or HBsAg.
If you are certain after careful checking that the test and reported result are correct, you should then make sure the laboratory that did the test repeated the test in duplicate and then did neutralization. If your daughter is ultimately determined to be truly HBsAg positive, she should be referred to a liver disease specialist for counseling and medical evaluation. If this is the case, she likely has chronic (life-long) hepatitis B.

From
http://www.immunize.org/askexperts/experts_hepb.asp
08-22-2016, 12:04 PM   #14
Maya142
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s. There has been a question of Ankylosing Spondylitis due to +HLA b27 gene.
I'm confused -- is he HLA B27+ or not? It actually does not matter. You can certainly has AS and be HLA B27-. But most people who have AS tend to be HLA B27+.

If I remember correctly, he has had an MRI that showed evidence of inflammation in his SI joints. It does sound very much like AS or at least some type of Spondyloarthritis.

Incidentally, my husband has AS and has had a lot of trouble with his kidneys. His is mostly caused by 30 years on NSAIDs but there are also kidney complications that are related to AS.

Since he is 17, he can STILL see a pediatric GI/rheumatologist. I would suggest getting an opinion at one of the big pediatric hospitals -- like CHOP or Boston Children's. Both have excellent GI and rheumatology programs.
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Mom of S (23)
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08-24-2016, 05:46 AM   #15
CarolinAlaska
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So as mentioned above, positive Hep B antibodies does not mean he has the disease. They are probably testing further to look for acute disease. There is no Hep C vaccination that I am aware of. The liver biopsy sounds like someone is keeping the ball rolling. It is hard to be patient when our kids are sick.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
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