What I Thought I Knew about Hep B

May 7, 2013 Eileen, HepB+ 3 Comments

If you’d asked me seven years ago, right before we adopted our beautiful daughter, if I knew anything about Hep B, I’d have said sure. It’s a virus. It has something to do with the liver. What else do you need to know?

As it turned out, our daughter’s case taught us that there was a whole lot to know. And to be her best advocate, especially when experts didn’t necessarily agree on what should be done for her, I read everything I could get my hands on. I knew the lingo, knew the facts.

But now those facts are changing, and the things I thought I knew….well, I guess I don’t.

What I Thought I Knew:
Most kids with Hep B need no treatment at all. Basic, Hep B 101. This is what the doctors told me when we were researching the special need. This is what I’ve told countless mothers and fathers who are wondering if they should check the box marked Hep B on their special needs checklist. Kids are usually in the immune tolerant phase, I’d tell them, which means that although they have the virus, their bodies are ignoring it or tolerating it. The virus became part of them when they were mere babies and their immune systems weren’t mature enough to recognize the virus as a threat, so unlike adult immune systems that spot the virus from the get-go and raise some serious cain (and get rid of it completely 95% of the time), kiddos usually just kind of co-exist with the virus and will probably keep it for the long haul.

What Researchers Are Saying:
Kid’s immune systems may not be so tolerant after all. This is huge. New studies are challenging the basic premise of Hep B 101. In fact, one study found that older people with chronic Hep B seem to have weaker immune responses than the younger individuals infected with the virus. To quote one article:

Scientists from Bertoletti’s laboratory, together with clinical collaborators in the UK, isolated T cells from 44 people with chronic HBV infections between the ages of 10 and 30, the majority of whom were of Asian descent. Around 75% of the world’s 400 million people with chronic hepatitis B can be found within the region of Asia. They compared the immune samples to those from healthy age-matched controls, and showed that young patients infected with HBV expressed increased levels of virus-associated T cells, and these T cells displayed the ability to expand and produce pro-inflammatory signaling molecules known as cytokines, which are involved in antiviral responses. Furthermore, these HBV-specific T cells became more dysfunctional with age, the authors found, suggesting that the longer a patient is left untreated, the less effective the immune system becomes at clearing the virus.

They go on to say that the current measure of immune activity in people with chronic Hep B, the ALT, may not be the best indicator of who should get treatment. Most of the young patients don’t have labs that would cause anyone alarm. But, and here’s the biggie–they might be missing a window where they could clear the virus at a young age–a window that might be closed, or at least harder to open, when they’re older.

What Doctors Are Doing About It:
Studies are currently happening in big medical centers on both coasts, treating kids who previously wouldn’t have been considered for treatment at all. These kids have normal, or just slightly elevated liver enzymes. In the past, doctors would say that treatment of these kids would be a waste of time. Now, they’re being treated with either PEG interferon alone or a short-term antiviral followed by PEG. These studies are still in their infancy and it’s too early to say if they’ve been a success. But, from the few people I know who have kids in the study, some of these kids who’ve previously shown NO immune response to Hep B, with the help of PEG, are giving the virus a serious beating.

I remember years ago when I was considering treatment for our daughter, one of the leading world experts in Hep B said to me, “This virus will never be less a part of her than it is now.” That swayed me to the side of treatment. And for her, that was fairly easy because her labs were worrisome. She was one of the minority of children that most doctors would say needed treatment. She started PEG interferon as a 3 year-old. The PEG was off-label because it’s not FDA approved for kids with Hep B and she was the first Hep B child to ever receive PEG at our large urban hospital. A year later, not only was she better, she no longer tested as having the virus. It was beyond what we’d hoped for–the best possible result. I’ve always wondered if part of the reason for her success was her young age. Our doctor, who is involved with the current studies, seemed to wonder too.

My sincere prayer is that this research will lead us to a point when all parents of kids with Hep B can have the joyous experience of looking at a lab sheet, wiping away tears, and reading the words Hep B NEGATIVE!

3 responses to “What I Thought I Knew about Hep B”

  1. Amy W says:

    My girl was treated a year ago with Interferon. Did not touch the virus. She is no better off now than the day she started treatment. So we are looking at this study PEG with Interferon. I hesitate to put her through another treatment so soon. My husbands thought is without trying she isn’t going to get better. Your post just might have given me the little nudge I needed to make the call. Thanks

  2. Stefanie says:

    SO much wisdom and valuable information, Eileen. The face of HepB is changing so rapidly, thank you for keeping us all up to date!
    P.S. What a precious picture of your girl – what a blessing she is negative now!

  3. Lucas says:

    Hi Eileen, great reading your post. Can I discuss with you further? Hep B has recently come up in our family with my testing positive and is pregnant with our first. Would love to be able to speak more with you if I can.

Leave a Reply

Your email address will not be published.

© 2022 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.