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Crohn's Disease Forum » Parents of Kids with IBD » Liver enzyme concerns


 
08-10-2012, 05:16 PM   #31
Patricia56
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No it is not. See the part near the beginning under Administration.
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
08-10-2012, 05:19 PM   #32
David
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VERY interesting about the milk thistle Patricia, thank you!
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08-10-2012, 06:43 PM   #33
Dutch941
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I have been following the milk thistle for a bit now....we have a whole bottle in the cabinet....unused....
Reason:
In addition to its alleged liver healing potential it also is alleged to effect puberty....apparantly it somehow effects hormones in a way that may affect puberty..what we cant confirm Is how much...because my son is 13 and has missed out on a year of growth already due to UC we are Leary of adding anything that might impair his puberty progression.......otherwise we would have already been using milk thistle as it sounds promising..
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Don(Dutch)
Father of 3....Matt, Cam, and Kyra

Matt age 13
Dx dec 2011. UC
Pentasa, fish oil, b12
6mp from dec 11 to oct 12(stopped after liver enzyme issue)
08-11-2012, 12:36 AM   #34
Patricia56
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Are you guys being seen by a doctor who specializes in pediatric IBD? One who is working in a Pediatric IBD Clinic at a major university/medical center/tertiary care center?

Growth failure is not typical of UC. As in 88% of kids with growth failure have Crohn's and no more than 12% are UC (most estimates are more like 94% and 6%). When you say he has "lost a year of growth to UC" what exactly do you mean?

How sure are you of the UC diagnosis? What exactly did his diagnostic workup include?

Have you considered getting a 2nd opinion on your son's diagnosis and treatment plan?

Last edited by Patricia56; 08-11-2012 at 12:59 AM.
08-11-2012, 01:53 AM   #35
izzi'smom
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Dutch...let me know how the LDN discussion goes...I have asked in the past but our doc doesn't like the lack of studies.
If you DO decide to go with Remi we <3 the infusion center at Upstate...they were beyond wonderful for the most part!!
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08-11-2012, 06:45 AM   #36
Dutch941
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Ang, We had the discussion briefly when we first discussed the possibility of 6mp failing.....we're not quite there yet because 6mp is still promising.....but the discussion was basically the same outcome as yours...he is not interested in trying LDN....says he personally would not prescribe it due to lack of study at a significant IBD university. He did agree to read our collection of info.....he told me he read through it...but we haven't discussed his opinion yet....I'm sure not much has changed.
Patricia,
Yes we are seeing a pediatric IBD gastroenterologist. We're pleased with him and we are at a university care center although not in a major city...the growth issue is because he was Ill for almost a year, maybe longer and undiagnosed (typical of an IBD onset). And during that time he was extremely picky and not eating properly while still very active.....his colon was 100% affected and was a war zone once we got to the bottom of things. He was also vomiting regularly.
His diagnosis is based on his clinical symptoms, the colonoscopy,endoscopy...the biopsy, and most recently Prometheus testing.....all showing UC and no indication of Crohns. We are told we may soon have an MRI? To look at his small intestine just to confirm no damage there.
In addition it is our understanding that UC or Crohns we would be treating the same way at this point anyhow.
But he did, in fact, lose a lot of nutrition for almost a year during what was likely the beginning of puberty. His growth was minimal during that time for whatever reason.
We have considered going to Boston, not for a 2nd opinion, so to speak..but just to,put a 2nd set of eyes on to be sure we don't have other feasible alternatives......

Last edited by Dutch941; 08-11-2012 at 06:51 AM. Reason: Typos
10-04-2012, 11:25 AM   #37
Dutch941
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David......had the vit d and b12 checked. Vit d still rising at 42 now...up from 32 a few months ago,..b12.....grr. Not only is it not deficient...it's the opposite! 1900.....more than twice the normal high?? Wondering if we should stop supplementing? Any thoughts on this? Quick research says could be sign of liver disease? Maybe due to the 6mp induced hepatitis??
10-04-2012, 04:06 PM   #38
David
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How much B12 have you been supplementing and how often? Skimming over the thread I don't see a test result for it?
10-04-2012, 07:47 PM   #39
Dutch941
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I think it's 500 mg once a day.....but I'm assuming that since his level is 1900 in his blood and it should be 800 at its best that we should discontinue supplementAtion.....my bigger concern is if this indicates actual liver damage or if this is yet another result of the 6mp and will normalize now that the 6mp is stopped
10-04-2012, 10:57 PM   #40
David
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Did you test for B12 prior to starting supplementation? If so, what was the level?

What did your doctor say when those results came back?
10-04-2012, 11:57 PM   #41
Hobbes650
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"Prometheus tests suggest only UC and not Crohns......sigh of relief..."


Why the sigh of relief Dutch? Neither one is much fun....

I just recently had some funky numbers on a liver test. So, now trying to do more tests to see if my meds are causing the low reading, and also test for Wilson's disease. Doubt it's Wilson's, since that't genetic and nobody in my family can remember anyone with it or any other kind of liver problem. Plus my doctor has only seen one case of it. Just another day in the life of Crohn's I guess. Can't wait for the lab tests to stop being weird.

Hobbes
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Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
10-05-2012, 06:32 AM   #42
Dutch941
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@hobbes..
I know what youre saying about the labs....it's very stressful to try and enjoy my sons remission when we have to constantly worry about strange labs.
In regards to the sigh of relief..I agree..neither Crohns or UC is any fun. But if you had to pick one..UC would be the one to pick only because the scope of damage is limited and the end game can include removing the colon...unlike Crohns where organs affected cannot be removed. UC is bad..but Crohns is definitely worse....
11-02-2015, 02:01 PM   #43
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As I mentioned in one of my other posts, my son just started on Remicade. He had his second infusion last week. He's not better yet and we are waiting for the miracle to happen. During the second infusion, the nurse said she needs to do the regular blood work. This morning I get a call from the doctor saying "my son's liver enzymes are slightly elevated". He wants to meet my son next week to check the levels again.

His liver enzymes were normal in Jan'15 and Jun'15. I'm so concerned now. This disease is so tough. I'm still trying to understand what's happening.

1. Can the Remicade elevate the liver enzymes?
2. He was given Tylenol and Benedry before blood test. Did any of the medications cause it? I know it's highly unlikely, because he took the medicine about 10 mins prior to the blood test.

Did you or any of your kids experience this? Is it a cause of concern?
My son was never on Imuran, 6MP.

My son is diagnosed with moderate to severe Crohn's Colitis in April 2015. He had 6 months of symptoms prior. Waiting for his remission.
Past Medications:
Prednisone (30mg, tapered). He failed Prednisone
Current medications: Remicade (2 infusions done, 5ml/kg : No major breakthrough yet), Pentasa 500mg 2x a day, Prilosec 20mg, Vitamin D and Iron supplements
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