Hep C Discussion Forum

Hi Becky,

The actual HCV test, not the antibody test will definitely rule the possibility in or out. best of luck to you. There are also several cases of people testing positive for the antibody but negative for the virus. 

Best of luck and thanks for keeping us posted On your son's progress through this challenging time.

Hi Becky,

I too am sorry to hear you're going through all this confusion. As the GI doctor said, the hepB is likely just the vaccine, especially at 16, your son would have definitely had that (required for school) but as Mallani said it's not related nor does it have any bearing on if he does/does not have HepC.  As previously mentioned, if he was reactive to the HepC antibody it would mean either one of 2 things - 1. He currently has an active HepC virus or 2. He was at some point in his life exposed to the virus and possibly cleared it on his own. They will need to do the Viral Load test to determine if there's active HepC virus in him.

I personally would as Jill said, look for a Liver Specialist or Hepatologist, not another primary or GI doc. I know many do see GI docs but at this point I think you need someone who does nothing but Liver disease as they tend to be the most knowledgeable. At 16, I do not think you NEED to find a pediatric liver specialist or anything like that; I know at 16 I was seeing a regular "adult" hepatologist. You had also mentioned that his "blood tests came back perfect" - I'm not sure which ones they think were perfect unless they ran a liver panel on him and his ALT/AST's etc were fine. Be sure to ask those questions. I was born with virus and my blood work has always been "perfect" - my ALT/AST's have never been higher than about 30. Often times these days what triggers a HepC test is other numbers coming back elevated on a blood panel as that tends to queue the doctor in to something else being wrong. But if the "perfect" blood work results being referred to were the LFT's - that by no means indicates there isn't an active virus.

Another thing, about them refusing "to admit that he would have C" ... I was diagnosed at 13 and I remember being tested numerous times and several doctors just assuming it must have been a false positive, etc because most doctor's don't expect a teenager to test positive unless there is something in the patients background that could have exposed them. For example, my doctor basically told my adoptive mother that since I was 13, I didn't drink, I didn't do drugs, I had no tattoos, and I had never received blood products or had surgery that it must have been wrong. Thankfully she kept pushing until I could see a doctor who agreed to do the viral load test.

Good luck and keep us posted!

Hi again, Becky, sorry to hear you still haven`t had a definite answer yet, and anyone would be confused with such conflicting information.

Of course you need to know whether your son is infected with Hep C, and your husband is quite right about the necessity of getting a second opinion.  I really don`t understand why you`re not getting anywhere with this and you must be so frustrated with it all.

Try to find an experienced and reliable liver specialist or hepatologist who`ll be able to give you a clear and full explanation, and do let us know how it goes. Best of luck!

Hi Becky,

Of course you are confused.  Agree with Tig, you need further clarification for you and your family's peace of mind. If your current GI won't provide that, a second opinion is called for.  Also, you should get copies of all lab work thus far, as well as any forthcomng. You have a right to that information.  Good luck and keep in touch.

wayne

Ok, I am so confused. We went back to ACH today. The dr states that his blood test came back perfect? How in the world could that be? I am super happy but really don't understand how 2 out of the 3 test came back either with the antibody (blood bank) or virus (primary dr). Now when we first went to the GI dr, and she had the lab work from the primary dr, she stated that the primary dr was incorrect about my son having Hep B it just showed that the hep b immunization was doing its job, and that he did infact have hep C virus. She did the work up, as mentioned in a previous post, and today she said he was fine and that the only thing was he needed to get the booster for the hep B. really???? She didnt mention that last month....plus I have told his dentist, allergist and school nurse, (GI recommendation) that he was positive for the virus.....

My husband wants a second option, I am so confused that I don't know what I want :( It isn't that we want our child to have this, we just want to be sure he doesn't so in 30 years he doesn't go into liver failure. I did question about the difference in the test, I was told that ACH was a very reliable source, which I do agree, but, we all make mistakes.....

At one point you mentioned All Childrens. If you are talking about the one in St.Pete you are in very good hands. Best of luck. I was visiting with my nurse practitioner the other day, and she told me in the clinical trials for the new drugs many of the patients thought they were getting placebo because the side effects were so slight. At least he won't have to take the beating they were dishing out a couple years ago.

Alan

 

Hi again, Becky, I`m glad we were able to give you some reassurance! 

Those lab tests look standard for a follow-up, and let us know when you have any more information.  I notice the Hep C RNA/PCR test requested is for a `qualitative` test which will give a posiitve or negative Hep C result and I expect your son`s doctor will want to do a `quantitive` test as well to determine the amount of viral load.

Best of luck with your appointment next month, do keep in touch! 

That's exactly how I found out I had it and at that age. My dad and I just couldn't wrap our heads around it. I was young and in denial and refused to acknowledge or treat until a couple of years later. Hopefully, that won't be the case for him because the new meds today are great and they will only get better. I highly doubt he has any damage at this point. I had it since birth and by the age of 19 had no damage yet. I wish you both the best with whatever you decide to do.

Hi Becky, welcome from me too! 

I`m so sorry to hear your son has had a positive diagnosis of Hep C, and I`m sure you must have been shocked to find this out and of course very worried.  Please rest assured though that he will be able to clear the virus and be cured in due course, and do let your son know that too.

Do you have any more information yet, for example his genotype, viral load, or any more blood test results?  The newer all-oral treatment drugs haven`t been studied or approved for the under 18`s yet, but as he is already 16 I should imagine it would be safe for him to wait a couple of years, depending on whether or not he has any liver damage, which seems very unlikely at his age.  It usually takes several decades of living with the virus for significant liver damage to occur. 

Your doctor will advise you on the best course of action once he has all the relevant information so just take it step at a time, and remember we are here to give you as much support as you need.

Sending all very best wishes to you and your family.  Jill 

 

Becky, I definitely have something to share on this.

I also have a 16 year old child (a daughter). When she was 18 months old, we had her tested for the HCV antibody. It came back positive, indicating likely exposure at birth (the most likely transmission route from HCV+ mothers). I was devastated, and the primary doc made an appointment for her with a pediatric liver specialist. But there was good news: the HCV virus was undetectable. She had the exact same result at 4 years old--antibody+, HCV-. The docs said it was highly unlikely she was infected; their assessment was that she had been exposed at birth, but had cleared the virus. The HCV antibody would be persistent--maybe lifelong.

I didn't think about it again until recently when I started my own treatment and asked some questions of my MD. At the time my daughter was tested (1999 and 2001) the HCV/PCR tests were less sensitive. I believe the cutoff was 6000 iu or 10000 copies. I asked the doc about it, and she said while it was still extremely unlikely that my daughter was infected, to be totally sure, she recommended a retest with today's very sensitive assays.

Now I'm in a dilemma. I have never discussed my condition with my daugther (there was no reason to), and she is at the sensitive age where drug experimentation is a prime thing going on. As I'm sure most of us know, the majority of people (over 60%) who have HCV got it from intravenous drug use. I am still trying to decide exactly how I'm going to handle this. I have several guesses as to how I contracted the virus, and I am debating whether to simply settle on one (a possibly unsanitary acupuncture treatment in the 1980s) or an earlier youthful mistake. It's a big can of worms to open.

Keep us posted about what his results are. It sounds like he hasn't had the virus test yet? Vertical transmission (mother to child) is low--around 2%--and it may have happened, but then again, I hope your situation is the same as mine (hopefully!) is: early exposure + clearance.

--Dee

_________________________

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started 12 weeks Sovaldi + ribavirin February 1, 2014. Last viral load test over 9 million, Currently undetectable at 5 weeks of treatment March 6 2014.

Hi Becky,

Just because your son has the HepC antibody, doesn't mean he has active hepatitis C. He may have been exposed to the virus at some stage. Your doctor will be checking the Viral Load. If that is Undetected, you can relax. Many people carry the HepC antibodies, but don't have HepC. Wait until you get the results and let us know. Don't worry. Cheers.

Welcome Becky.

Your questions are entirely expected being so new to this but rest assured there are many people here who will introduce themselves to you in time that will offer as much advice and wisdom as they can muster.

As for what to expect... yes many things will depend on the outcome of his testing. First they will likely get (if they haven't already) his viral load (VL). This is the number of virus "buggers" as I call them in his system. Please do not be alarmed if it comes back something crazy like 2 million. The virus replicates inside the body by the billions on a daily basis and the immune system does what it can to eliminate as many as possible. This number can change by the day and it does not at all indicate "how sick" someone is. Then they will also determine his Genotype, such as 1a, 1b, 2, 3, etc. Certain countries have a greater likelihood of one genotype over another. Your profile doesn't specify a country so I cannot specify. However for example, I am in the US where Genotype (GT) 1 is the most common however I have GT2. His need for treatment will depend on the current state of his liver; likely determined by Liver Function Tests "LFT's" and if further info needed, a liver biopsy - and his genotype. Different GT's have different treatment recommendations.  If for example his GT requires an interferon involved treatment but his LFT's are all great - there's a possibility that your doc may suggest you hold out until more interferon free meds are approved for that GT as those approvals may be in the next year or so. I withheld treatment for until last year for an interferon free regimen to be available for my GT and once it was I jumped at the chance to treat.

If you know his GT already or any of the other lab results, feel free to post those (if you want) as people will be glad to provide input. Also letting people know where in the world you are may help as we have people from all over here and sometimes questions are best answered by those familiar with the treatment options/healthcare structures in your country.

We are here to help and answer any questions we can. And I'm sure that your doc already discussed it but the chances of catching HepC from a family member through day to day living is rather slim. Please understand though, this probably isn't going to be easy to swallow for your son. He's probably looked it up on the internet already and read all sorts of stuff that may have freaked him out. I was diagnosed at 13 years old and I remember that feeling. You feel entirely isolated, especially at that age because he probably won't want to tell his friends, everything he sees on the internet is going to be about older people and videos with older people and he's likely going to feel like the only one out there his age with this, confused, and maybe even angry about why this happened to him. I know I was, I went through all those emotions. Its hard enough being a teenager, it's a whole other story when you feel like you're a total outcast harboring this great big secret. So please, just keep an eye out for him and maintain lines of communication between yourselves. And remember, while you're his mother - this is HIS diagnosis. I remember my adoptive mom blurted it out in front of one of my "friends" once (to her she didn't understand why i didn't want anyone to know) and that person basically treated me like I was radioactive and wouldn't come near me; told me only drug addicts got "that disease". Kids aren't nice nor are they educated in this sort of thing.

I actually just recently searched www.kidshealth.org - specifically the site for teens and was horrified to read the description of Hepatitis. When you search "Hepatitis" it gives different search results, the first one being "Hepatitis, an infectious liver disease, is more contagious than HIV, and just like HIV, there is no cure. Find out how to protect yourself." So then you click the link and it brings you to the hepatitis page where the very first paragraph is:

"What do drugs, alcohol, unprotected sex, tattoos, and body piercings have in common? They're all things your parents might lecture you about avoiding, but there's another connection: They can all lead to a liver condition called Hepatitis." 

This is the type of stuff your son will come across as he searches and it's also the type of stuff his friends will come across if they search. As anyone educated in this disease knows; drugs, alcohol, tattoos and unprotected sex aren't the only ways to contract HCV but as long as sites like this are out there, the stigma will remain.

So as I mentioned, feel free to post whatever info you may know already. Read through some of the more recently posted intros as there are others here recently diagnosed and many of your questions may have been discussed in their threads and be ready for many "hellos" and "welcomes" as they are coming.  Keep us posted. And if you have any questions specific to how a 16 year old should handle this or something similar, please do not hesitate to reach out. I have found myself recently with the desire to be an advocate for greater information available to and directed toward young people. I know my life at 30 dealing with this is way easier than it was at 16.

Welcome again and keep us posted.

-- Edited by Enavigo3891 on Wednesday 19th of March 2014 02:24:45 AM