TREATMENT OR NOT..HELP!!!!

Question

Ok here I go again. My 13 yr old daughter has had hcv since birth. I have had it for over 20 years. Tried tx 3 times and was unsuccesful. Lots of complications. I am considering have her do tx now rather than later. Her viral load now is only 76,800, which I think is pretty low. she is geno type 3. She does not have any elevated blood work. she has been having problems fighting off the wart virus and she has been getting more viruses than she used to. Im thinking its her immune system not fighting these viruses off. I dont know though. I am really confused on tx and want to do what is right for her. i am scared. What do you feel. All responses are appreciated.

mremeet · Answer

Sorry to hear about your daughter. Not trying to sway you one way or the other, but we do have a member or two here with teenage children that have cirrhosis from being born with hep C. In some kids the disease lays very low and causes almost no damage. In others it starts fibrosing the liver when they are young and then picks up the pace as they near adulthood - all the way to end stage cirrhosis. So if you do hold off on treatment, keep a very close eye on her liver functions and fibrosis. Watch it very closely. They also have a non-invasive way of asessing liver damage called a fibroscan, which is not yet FDA approved. But if you have a recent biopsy you could also get a fibroscan around the same time and correlate the two. Then continue monitoring once or twice a year with the fibroscan to keep track of what's going on. 

Conversely, you could opt for treatment soon. Genotype 3 is much more responsive to current treament than geno 1 is, so she has that going for her. There's also a new drug called Alinia that some people here are already adding into their IFN+riba treatments. Alinia is already FDA approved for the treatment of parasites, so it's already available and on the shelf. It's not yet known conclusively if it works at helping to cure HCV, but trials have already been conducted in Egypt for geno 3 showing that it works well at improving cure rates - plus it has minimal side effects. So prospectively, your daughter could be treated with IFN+riba+alinia for 24 weeks and end up being cured of hep C. That's definitely a real possibility that's within your reach right now. And young people are strong and resilent, she might actually tolerate treatment much better than you imagine. Try and contact a forum member named "travelmom" here and maybe she can give you some advice about a child that is being treated for hep C. She's been through it all and has the best insight into these sorts of things. Good luck...

Lindaz · Answer

Eileen, If you are in doubt, then as mentioned before.........I would seek another Hepatologists opinion.  Even if you need to get another after that one as well .....then get as many as you need  until you feel comfortable with what you decide to do.  Good luck to you and your daughter xx

susan400 · Answer

One thing that comes to mind in making your decision is 'will your child still be covered under your insurance plan after she turns 18 - if she's not a college student??'    These treatments can be quite costly and I know that a lot of insurance plans cut off at age 18 -if the child is not enrolled as a college student.  Just something to consider.....  I know that you will do the best thing for your child.

Susan

Eileen104 · Answer

We are in Houston texas and I believe I had a very good Doctor.  His name is Dr. Galati.  He is one of the Hep C specialists from around the world.  Yes he is wonderful also.  He quit taking my insurance so I had to quit going to him.  Unfortunately there are not many pediatric specialists here.  We do go to I believe one of the best there is.  Her name is Barbra reid.  Unfortunately I always feel like I know more about Hep C then she does.  So whatever.  I will just keep monitoring my sweet daughter and hope that this ugly disease does not continue to damage her.  I pray everyday that they find something that will eradicate this disease without all the side effects.  I wish all of you the best in your journey.  I try and keep positive about this hell for her and for myself.

nygirl7 · Answer

I feel like they work with the pharmaceuticals

You're right and I think a lot of them do and that's their story.  There are some really absolutely wonderful specialists out there though. I don't know where you are but Dr. Jacobson in NYC is one of the kindest most caring doctors I've EVER met in my life. The fact that he's the expert in the field came in second to me when I went...I knew he really cared about my personal specific treatment and situations and didn't see me as if I was just another number. 

If you could get her there for an evaluation - it would be worth the time and effort.

I wish we had better more solid advice but you sound like a wonderful mother and when it all comes down........THAT is the most important piece of the puzzle there is.  :)

Eileen104 · Answer

Thank you both. I am taking her next month to her specialist. she does have some mild liver damage. I will discuss again with her hep doctor about tx but i think I like the idea of waiting until shes 18 or so. If she doesnt continue to have immune problems I think we can wait. Thats what im hoping for now. Its just so confusing on whats best for your child. Its one thing, yourself but to put your child through tx is scarry. I dont always trust the doctors to give me the best advise. I feel like they work with the pharmaceuticals. But anyway, thank you all for listening and responding

Marcia2202 · Answer

If I remember correctly, you posted that your hepatologist advised you to start her on treatment, as she already has fibrosis. Your doctor must have his reasons to suggest treatment, as they usually don't start treating youngsters before they are 18. But why don't you get a second opinion, if you don't trust his advice. I think it is very difficult for any of us to give you that advice. We don't know your child and as nygirl7 says, every child is different. I wish you all the best and don't despair, everything will be okay. She is young and treatment is easier on the young.

Marcia

nygirl7 · Answer

I don't think anyone can give you the advice you want to hear. A definite yes or no. If it were my own child I'd probably wait until she was a bit older and more able to deal with the consequences and problems of treatment. Has she been able to handle a biopsy to see what is going on as far as liver damage? Could be she is young enough not to have any and could escape all the tribulations of doing treatment. 

15 just seems so little to me - but I don't know your child. how mature she is or how tough she is....My daughter is 20 and my son 17 - I was diagnosed 3 years ago so he would have been about 14 and I couldn't picture him handling it in a million years. On the other hand my daughter is a tough cookie with more determination than anyone I've ever kown and she might have been able to.

I'm sorry - it's just one of those things that would totally have to depend on the child. The benefits could be huge however so could the pitfalls as you well know having done it yourself?