One of my 3 kids is also unfortunate tested positive for the virus in 2006 age 18, she is in college now. She is 1/1 with genotype 1B, the dr recommend her to wait till new drug come to the market. My biopsy showed stage 3/3 so I treated and SVR, I hope the new treatment come to the market soon. I was so desperate when I found out both of us has it, but this place/member help me through the tough treatment. So learn as much as you can that will help you to make a decision.
W.
After I was diagnosed last year, I had my daughter tested (she was 18 at the time) She unfortunately tested positive for antibodies and also had a vl of 400, 000. Like you, I wanted to tx first. I am a geno 1a. Starting vl was 919,000. I was a 1/0.
I am currently 38/48 in a Vertex trial and doing very well with minimal sides.
My daughter's ALT was slightly elevated....somewhere around 63, I think.
She had her biopsy recently and is 1/0 also.
She wanted to tx this summer, but our hepatologist has suggested she wait until the new drugs come out. She agreed after going over all options with him.
He also told me that sometimes when a child is born with the virus, their body does not recognize the virus as an invader, therefore there is no dramatic immune system response to it. That means there is little to no inflammation and that would hopefully translate into less liver damage.
That seems to have been the case with us. She is watching her diet, staying in shape and we will monitor. The doc went as far as to indicate they wouldn't even consider another biopsy for 5 years.
I don't think I will let her go that long, and I am quite sure she will want to tx way before that anyway.
Another mom here has twin girls, one tested negative, the other tested positive-but cleared on her own.
Bottom line....your son may show to have cleared this on his own. If he has not, you have started your journey in a good place...MedHelp. There is an immense amount of good information here and so many good people willing to help.
Do lots of trial research, also and ask lots of questions. The advice I received here about trials has been invaluable.
HCV ***@**** moreso when it involves our children. Feel free to PM me if you ever want to talk about it.
Wishing you the best....please keep us posted.
Isobella
I am genotype 1a I have gone to the Liver Institute in Dallas and I feel like that is the place for me to be. They took several vials of blood and are going to do a fibrosure test and a hepa score test among some other tests. I am looking into doing a clinical trial with a 3rd drug called mk7009 by merck. They also gave me 3 others to consider such as R05024048 by pharmaset roche (sp) and bms790052 from bristol myers squibb. Also something called Filibuvier. I dont know anything about them yet but am going to learn everything I can. I am going to post this as a question again on the forum to see if anyone has any experience with these trials or know of anyother such as I saw in a pod cast from the UC Davis from Dr Lorenzo Rossaro from schering, vertex and novartis. Also was mentioned the Sanchez and Berg studies. Any comments
I know you have all sorts of fears and concerns right now but try to take it one step at a time. Wait for his 2nd test to come back because it is very possible that he does not have active Hep C but, rather, just the antibodies and that would be a GREAT report to get.
What genotype are you?
My son who has tested + is 13. Does anyone have any experience with having a child how has had treatment? I plan on doing the treatment first and I hope I can wait to have him treated if possible/ necessary. I hear it will stunt growth and all kinds of other stuff. I am also concerned about side effects with me and if it will scare him. Thanks for your comments.
I'm sorry for your Hep C diagnosis. I remember the day (just a year ago) that I received my diagnosis of Hep C -- not a fun day at all. :(
I'm proud of you "MOM" for pushing the doc to do the second test on your son. As you obviously know, the pediatrician is wrong to assume that there is nothing wrong just because the LFTs are in normal range.
I gave birth to 3 children while unknowingly having Hep C and, THANK GOD, they are all negative, as is my husband and my ex-husband. It does, however, sometimes pass from mother to baby but keep the positive vibes going for your son. He could very well have cleared it on his own. Please let us know how it turns out. By the way, how old is he?
I was born with hep c, courtesy of my Mother. I've read that there is a 5% chance of passing it on, so it makes sense why one of your children has it while the other does not.
It doesn't really matter though.....find out if your son cleared it - most likely he did not, since that usually happens within a couple months after infection. The good news is that if he IS infected with a sustainable viral load, he's so young and treatment is so effective now that you have little to worry about.
Take care