Did I make my daugher sick?

[roostermom]

We got conslusive test results back from the Dr. stating thay my daughter does in fact have Hep C, which I think she got from me, but I don't know her gnome type yet. My question is what bearing does the viral load number have in relation to potenial damage to the liver. It is my understanding that it is not a strong predictor of what damage the illness has caused, if any, to date. All of her liver enzymes have been within normal range since at least 2005. Her viral load is something like 1004000. WHat is the protocal these days for starting treatment. I am a type 1B relapser that took 48 weeks of combo rx

[hairtamer]

I promised you my daughter's results.  She was negative and so relieved.  My prayers were answered.  Merry Christmas!!!
God Bless,
Rose

[jmjm530]

DD: "Is anyone as concerned as I am that several children of HCV+ parents,who have tested negative for HCV in the past, are now testing POSITIVE for the virus?"
-------------------------------

Rooster,

Thanks for the clarification. And yes, testing normal for liver enzymes does not mean your daughter didn't have HCV, and as Mre suggests, she may have either had it at birth, or picked it up later in life from another source, as her positive HBV test indicates that other risk factors may have been at play.

DD,

As to MerryBe -- again, to date, there was only one positive via a very sensititive test, that was sandwhiched between UNDs. I believe she will re-test her son again.

So...I think at this point - while I respect your concern in general -- it does not seem to be born out by what has been reported in this forum.

-- Jim

[mremeet]

"Is anyone as concerned as I am that several children of HCV+ parents,who have tested negative for HCV in the past, are now testing POSITIVE for the virus?"

Would only like to add to what jim said above - you'll also have to find a way to accommodate the fact that roostermom's daughter also tested positive for HBV exposure (not just vaccination antibodies), as previously pointed out to you. Please let us all know how your theory will be "adjusted" to factor that in.

And roostermom, do NOT feel guilty about your daighter having HCV! It's not you're fault, in the unlikely event you did actually pass the virus on to your daughter during birth or perhaps afterwards, obviously it was unintentional. And hep C can be CURED, your daughter will in all likelihood eventually be cured of HCV and live out a full life. So don't beat yourself up! Also, FYI since your daughter has been exposed to HBV (as her test results indicate), and you've never been exposed to HBV yourself, then this definitely means that she was exposed to some other risk factor(s) related to sexual or blood to blood contact in order to have contracted HBV. If it's blood to blood contact, then she may also have picked up HCV at the same time from the same source.

[hairtamer]

I am waiting for the results for my daughter who is 32.  I had both my children C-section and had complications with my first (daughter), as I was running a fever before leaving the hospital.  A week after the surgery the incision busted open and I returned to the hospital and received a transfusion.  When I was diagnosed with hep c, I was told I had B and C, and that I got over B on my own and that B and C can be piggyback.  I told my children and ex husband to be tested, and they were all negative.  Then my daughter just recently tested and had a false positive.  We are waiting for the results now.   I received my monthly newsletter from Liver Hope (liverhope.com) and they have an article that a heart surgeon who had hep c gave it to 2 and possibly another during their surgeries.  As they all have in common the same surgeon.  The article is not up yet on their site, I have the hard copy.  
C. Everrett Koops website states that all should be tested because of the unknowns of this disease.
I personally believe that we need public awareness annoucements as to the severity of this disease.  We also need public assistance for testing, because of the lack of insurance for everyone/
God Bless,
Rose

[roostermom]

I will add all I can, but it isn't much. In 2005, I asked my pediatrician to check both my girls for Hep C. In getting a copy of that test because of all of the recent events, it looks like all they did was a liver funtion tests, and all of her liver enzymes etc were normal, and still are. I don't have a copy of the test she had done in college. This time, the first tests they did was for Hep A,B&C surface Ab and Antibody tests which started all of this by both the B & C coming back positive. Since I knew she had been vacinated for B, I asked them to run the test again, and unfortunately, they only ran the exact same test again, with out adding the RNA and PCR tests. So when the second test came back positive for C, I went to our internist and had them run the RNA and PCR, which came back positive with a viral load of 1040000. So in my initial posts. So I now know that doing a liver function test which comes back normal does not mean that you don't have hep c. I am now asking my husband to check with his Dr. to see if that is the only test they did to determine that he doesn't have Hep C, because it looks like that isn't enough info to make the determination. I wish our healthcare providers would take the time to learn more about this illness, so when we ask them to test for it they actually do! I have been living with a false sense of comfort that I haven't been hurting my family, when it looks like I have, however unintentionaly. The lack of intention doesn't make this pain go away.

[DoubleDose]

Can either of you provide some specific details regarding your daughter's HCV testing history that will allow us to make comments on why, or how they might be HCV positice at this point???

We need  to know when they were tested for HCV and were determined to be negative, and when the result was positive on later testing.  Right now it seems we have incomplete information, and a lack of detail regarding the testing that was utilized, and when the tests were completed.  Please inform us of the specifics, and then we can provide some meaningful detail.

DD

[jmjm530]

Just noticed that you may have seen some threads in the past re Roostermom's daughter. Maybe she cn clarify if any testing was done in the past, and if so when was the testing done and with what kinds of tests.

[jmjm530]

Are you referring to "Roostermom" and "Merrybe"?

In RM's case, it's not stated that her child ever tested negative in the past, and may indeed have been infected at birth.  In "MB's case, the last test was UND, leaving the door open that the one positive was a false positive.

-- Jim

[DoubleDose]

Is anyone as concerned as I am that several children of HCV+ parents,who have tested negative for HCV in the past, are now testing POSITIVE for the virus?   I do not know how to explain away these circumstances without looking seriously at how HCV becomes detectable over time, and is transmitted in close relations,without initial antibodies.  Deos anyone have any meaningful explanation for how this may occur?

DD

[roostermom]

That was one of my worries. I had to go on neupogen to keep my white count up, and it caused a lot of bone pain, so I was also taking pain meds. On a trial, I don't think you are able to take anything to manange side effects. She will have to have a bipospy intiially. I have only had one, and that was at the beginning, and now do the firbrospec test to track damage, which by the way shows no changes since 2002. They say I am still 2 to 3 years out for something new to treat me.

[jmjm530]

Viral load has no bearing on how much liver damage someone has. For that, in most cases you need a biopsy, or perhaps a Fibroscan, but scans are not readily available. If your daughter turns out to be genotype 1, you should have her biopsied or scanned. Closest scan site to you is in Boston, but not sure if they are accepting new scan patients.

Dr. J. is one of the best, but I wouldn't commit to any trial until: (1) you get a good assessment of your daughter's liver situation, including how much damage she has: and (2) you get hold of all trial particulars and take your time studying them.

Like all of them, Dr. J. is human and has trial quotas to fill. Trials which may or may not be in your daughter's best interest.

My first hepatologist offered me a trial as well. After asking a few simple questions, he looked at me and said, "well maybe you'd be better off treating privately".

Keep in mind that trials may have limitations including: (1) placebo groups: (2) no helper drugs: (3) no individualization of treatment depending on viral load: (3) partially blinded viral load results.

All the best,

-- Jim

[roostermom]

We are having the Hep C Gnome test done on the 29th, so we won't know for a while, but I am 1b so I am assuming she will be too. She will see Dr. Jacaboson at Cornell in Fed. and their office has told they will most likely treat her (she is 22) and will be in a phase 2 or 3 trial which includes Vertex (?) plus comb treatement. Both my girls were C sections which cuts down the odds of mother child infection. I always assumed I got it at her birth from blood transfusions needed due to placenta acreta, but maybe it its the case I had it before then, and the acreta could be a causal factor. I don't know. All I know is that I am riddled with guilt, and am prepared to do what ever it takes to get her through to a successfull outcome.

[hairtamer]

Thank you.  We are waiting for the results and I do think it will be important for all if there is any relationship between my hep c and to my daughters, if she does have it.  My son is still OK, as he donates blood on a regular basis.  I will also be watching for roostermom's daughter's results and MerryBe's son's results.  
God Bless,
Rose

[DoubleDose]

In light of both of your stories, and the apparent fact that you now each have a child that tests positive for HCV, after having tested negative for the virus in previous years, I will leave this open question:  are there others out there who have experienced a child or spouse contracting the virus, or testing positive at a later date, after having first tested negative?

I have read numerous personal accounts over the years of this same thing happening, and I am more curious than ever, as to what it actually represents.  I would seriously doubt that each of your children just happened to become infected, independently of your infection, with a new and different HCV infection.  What must the odds be for that?  So, if that theory is shown to be not true (just do genotype tests to have a clearer idea), then how can these relations become HCV positive long after prior casual exposure, and after testing negative in recent testing for HCV?  This really raises new questions about delayed appearance of antibodies, or other not understood mechanisms.  I think you both need to discuss the history of your and your daughters' infections, and prior test results, with a good hepatologist.  I think it needs to be clearly determined HOW this could take place,,,or whether these are each NEW, and different infections from yours.  Please keep us posted of what you find out.  This does not seem like standard viral behavior.

DoubleDose

[hairtamer]

I forgot that part....  I am on my 6th week of tx.  I am 2b grade 2 stage 2 11,900,000 VL.  I had a transfusion in '75.  I was diagnosed in '99 with a 200,000 VL, mild minimal fibrosis.  My ex husband was tested and my son and both came out negative.  My daughter said she was tested during her pregnancies, so I thought everyone was safe.  I chose to do it naturally and was just starting menopause at the same time, and chose to do that naturally also.  I receive a news letter from Liver Hope (liverhope.com) the Jan '05 letter had an article on the progression of fibrosis in women on HRT and not on HRT.  Fibrosis was excellerated in women not receiving HRT.  I had advanced quite a bit in 8 years, so I started treatment.  I was shocked when I saw roostermom's posting, and MerryBe's posting on her son.  My prayers are with everyone who has this horrible disease and their family members.
God Bless,
Rose

[DoubleDose]

Do you mind if I ask whether you or anyone else in your daughter's family have, or had HCV in the past?  Was there any liklihood that she might have HCV, or was this just a random blood test?

DoubleDose

[hairtamer]

You and your daughter are in my prayers!  I too am going through the same thing with my daughter, who will be 33 next month.  She got her blood work back saying something was showing up for hep c, so her dr ordered hep c PCR test today.  They said it would be 3-5 days.  I watched her 2 youngest today so she could go and get the test done.  She has 6 children!!  I prayed with such intensity on the way home, as I live 50 miles from her.  I also pray that this disease will get the attention that it deserves.
God Bless,
Rose

[DoubleDose]

Didn't you recently post on the forum and indicate that your daughter had been tested multiple times in the past for HCV and has always come up negative?  Did the doctors explain this odd series of events?  Does your daugher have any risk factors for HCV over the past few years (other than your HCV infection), and does she have any particular feelings about how she could have contracted the virus.  
Can your doctor document the prior HCV tests that your daughter has had performed to see what the actual antibody results were?  I think that this case is highly unusual, unless your daughter indeed has some other risk factor since her last HCV test that you are unaware of.

What is her history as far as HCV tests?  When, what results, and which tests were used.  How long has it been since you and she were in regular, household contact?

The genotype test might reveal more information.  If hers is identical to yours, then I would delve much further into the background history, and the testing specifically.

I am very sorry to hear this news.  Please keep us informed of further developments.

DoubleDose

[GrandmaA]

I'm very sorry to hear your daughter also has hep. C. How old is she? When did you get the disease? How long had you had it when you found out?