Transcript of Live Chat with Dr. Phil

On November 14th, 2006, 6pm PST/9pm EST, PKIDs hosted a live, moderated chat with Phil Rosenthal, MD. Dr. Rosenthal is a Professor of Pediatrics and Surgery, the Medical Director of the Pediatric Liver Transplant Program, and the Director of Pediatric Hepatology at the University of California, San Francisco. Parents were invited to log into the chat and ask Dr. Phil questions.

Moderator : Hello everyone and welcome to PKIDs’ first “Chat with the Experts,” featuring guest expert Philip Rosenthal, MD, or as he’s known at PKIDs, Dr. Phil. The chat begins at 6pm pacific/9pm eastern. Please submit your questions as soon as you log on, typing them into the text box at the bottom of the chat window then clicking SEND.

prosenthal : Hi- I am logged on

Moderator : We are ready to begin our chat! Let’s welcome our guest host, Dr. Philip Rosenthal, Professor of Pediatrics and Surgery, Medical Director, Pediatric Liver Transplant Program, and Director, Pediatric Hepatology, University of California, San Francisco. First question, ready Doctor?

prosenthal : yes I am

Moderator : LB said: Do you know of any new treatments that may be available soon for the treatment of Hep B in children?

Moderator : V. said: Thank you for taking the time to chat with us parents!

prosenthal : Actually I am- adefovir is currently undergoing a clinical trial in children and i suspect might apply for FDA approval for children next year. I have been approached by folks from entecavir and telbivudine regarding pediatric trials so they likely will be forthcoming.

Moderator : Question from offline: As a mother to a child with HCV I find it hard to know what to be on the look out for. He is monitored every six months with blood work and ultrasounds but is there anything that we as parents should be on the look out for, for what and when do we alert the healthcare providers?

prosenthal : Good question regarding HCV. The good news is that most children with HCV will be totally asymptomatic. The reason for monitoring is to follow trends and detect as early as possible any changes that might suggest deterioration. It is very unlikely unless there is end stage liver disease that a parent will detect a change that portends a problem. Having said that, if there is GI bleeding, severe fatigue, swollen abdomen, excessive bruising a discussion with the child's treating physician should be obtained promptly.

Moderator : nawlinsmom said: Hi, thanks to everyone for doing this especially Dr. Phil, I have submitted this question before but what send it again - what symptoms should we as parents be on the look out for with out children with HCV during treatment and outside of treatment that could be contributed to HCV and when do we call our physician? Thanks

Moderator : Sorry, I just posted a question like the one Dr. Phil answered. Will post another

Moderator : nawlinsmom said: My son who just turned 4 experiences night fevers on a regular basis, approximately every 3 to 4 weeks. He will experience a fever of about 102 to 103 degrees for a day to a day in a half then develop mouth sores, could this be attributed to HCV?

prosenthal : Nawlinsmom: This is not likely secondary to HCV. Mouth sores might be a sign of a herpes infection with fevers. I would suggest your child be examined at the time of the appearance of the mouth sores and fever to make a definitive diagnosis and hopefully an appropriate treatment.

Moderator : V. said: What is the doctor's opinionregarding how aggressively one should treat HBV in a child with very high viral load, ALT 80s, liver biopsy showing periportal fibrosis, failed interferon, lamivudine resistant within three months etc. There are so few options. What are teh chances for therapeutic response as children age?(biopsy done pre-interferon, age4)

prosenthal : V.- You have a ton of issues here. You do not indicate the age of this child- but to generalize. If a patient failed 6 moonths of interferon therapy for 3x/week injections and is lamivudine resistane there are currently no other FDA approved therapies available. Certainly, consideration for compassionate use of adefovir or other nucleoside/nucleotide analogues would be in order. Has the child had a recent liver biopsy? has there been progression of disease? If so this would certainly make me want to do something. if the biopsy shows no progression i might wait for approval of other therapeutic options.

Moderator : Question from offline: I feel my son got HCV from me when they did an amnio on me. Is there any data supporting this as a possible route of infection?

prosenthal : HCV is known to be transmitted in utero. It will be very difficult if not impossible to prove the amniocentesis vs. usual in utero transmission resulted in perinatal transmission.

Moderator : GL said: Is it okay for our other children to share food/drinks with our daughter? f our children's hep b titers came back showing immunity, is tis life long? If not how often do you recommend boosters or repeat titers? Is it true that hep b is 100 times more contagious than AIDS? DO you see any promising treatments coming down the pike to cure this disease?

prosenthal : Regarding HBV transmission- if your children have evidence of protective antibody (>10 IU) after immunization then they are protected from getting HBV. In general, i would still not recommend sharing of personal items. Sharing food is NOT the mode of transmission of HBV. It is true that HBV is much more contagious then HIV. Currently, there are no official recommendations regarding the need for booster doses of vaccine after successful immunization. However, if living in an environment where a child is at risk for exposure i would recheck antibody titers in a year or two and boost if the titer has decreased below the protective range as it is much more cost effective to give a booster vaccine dose then to deal with another patient with active HBV. As to treatments, as i mentioned above many of the adult approved drugs will likely be undergoing trials in children in the next few years.

Moderator : GL said: Is there one piece of advice you would give to a couple considering adopting a child with hep b?

prosenthal : The advice i would give is that there are millions of people throughout the world infected with HBV. The majority of people infected with HBV do not get into trouble with their liver. New therapies are on the horizon with the possibility of significantly improving our ability to cure the disease. Immunizations should protect folks without HBV who are likely to be exposed. So if you really want to help a child and in return receive their love and affection, go ahead and adopt.

Moderator : Question from offline: Do you think research into ped HBV will ever get as plentiful as ped HCV?

prosenthal : I honestly do not know. Since there is a vaccine that is very effective in preventing HBV, in the future there will be less and less patients infected with HBV. This will translate in to less and less need for new drugs and a smaller and smaller market for drug manufacturers to sell their new treatments to. So, I doubt there will be in the future the need for many more HBV therapies. HCV currently we have no vaccine and lots of adults (a big market) with the disease.

Moderator : nawlinsmom said: I have read several articles that suggest infants born lly have a higher occurance rate of contracting HCV from their mothers is there any evidence that children born via C section are less likely to contract the disease?

Moderator : The missing word is "born vaginally" for the last question

prosenthal : nawlinsmom: There was some concern that c-section was safer then vaginal delivery for perinatal transmission of HCV. Subsequent study has demonstrated that there is no advantage of c-section delivery over vaginal delivery. It appears that maternal viral load is the determinant of the likelihood of perinatal transmission.

Moderator : LB said: What criteria is typically used in picking patients to participate in the trials?

prosenthal : LB: Each trial has its own set of inclusion and exclusion criteria, In general, most studies want patients who are naive (never received previous therapy). For HBV most studies have a requirement for elevated serum transaminases and evidence of viral replication. For HCV studies, transaminases can be normal but viral load should be elevated. Co-infections, depression, etc. are often some of the exclusion criteria. All studies require the patient and the family abide by the protocol, take their medications and return for labwork and physical examinations.

Moderator : V. said: What do you think about tenofovir? What do you think about combination lamivudine/adefovir for lamivudine resistance?(Hepatology 44 august 2006

prosenthal : V.: I have no experience in the use of tenofovir in children though adult studies suggest some benefit. For lamivudine resistant adults, addition of adefovir to lamivudine therapy is currently the appropriate treatment. Again, experience in children is not available.

Moderator : Question from offline: How do we get second opinions? We live out where there are no specialists in pediatric hepatitis C and we have no faith in our doctor.

prosenthal : There are a number of pediatric hepatologists like myself throughout the United States. Depending upon your insurance coverage or your financial situation, you can request a second opinion from a pediatric hepatologist. I often see patients from literally all over the world for second opinions.

Moderator : V. said: My son is now 6, 2 years post biopsy and now on combination adefovir/lam. No repeat biopsy, lowest viral load achieved now at 400,000. I guess I would like validation for our pursuit of the magical low viral load, against all odds, but you are thinking that another biopsy is in order. I just don't know how many biopsies to put him thru, at the rate of one every two years?

Moderator : This is a follow-up to V.'s earlier question

prosenthal : V.: Since combination lamivudine/adefovir is NOT an approved therapy in children i would strongly suggest you discuss with your child's treating physician what the end-point is and the degree of injury in your child's liver. Has the therapy helped? Only way to know is a repeat liver biopsy that i am aware of to answer this important question.

Moderator : nawlinsmom said: Having to face my son's first liver biopsy this Thursday are there any specific questions I should be prepared to ask the doctors? Thanks again

prosenthal : I assume your child will be undergoing a percutaneous or needle liver biopsy. Have you discussed sedation? Have you discussed the risks and benefits of the procedure? Is the biopsy being ultrasound guided? Will your child stay overnight in the hospital? Some of the questions i hope have been already discussed. Liver biopsy in competent hands is a relatively very safe procedure.

Moderator : rabblydoo2 said: We will be traveling to China in the next 2 months to adopt our daughter, who is two years old and hep b +, are there any over-the-counter meds we should NOT take with us to give her (Tylenol, Motrin, Robitussin, etc), given her hep B status? Thanks!

prosenthal : Not knowing the status of the child's liver disease it is impossible for me to comment specifically. In general, children with HBV can receive the usual medications given to children in the APPRPRIATE and CORRECT dosage. Why are you taking medications with you to give her in China? Is the child not healthy?

Moderator : Question from offline: Is the Ped-C trial over and if so how did it go?

prosenthal : The Peds-C trial of which I am one of the investigators is NOT over! The study has been fully enrolled and the study is progressing well. There have been no serious adverse events and the data safety and Monitoring Board has permitted the trial to continue. I anticipate that the results of the study will become available sometime next year. I am hopeful the study will have a very positive result. For those unaware, the peds-C trial is an NIH funded study comparing pegylated interferon with and without ribavirin therapy for children with chronic HCV.

Moderator : GL said: Our 6 year old son's current bloodwork compared to a year ago shows a 2.5 x increase in WBC and a decrease in RBC by 1/2...also an increase in abnormal liver fx. We do not have a current HBV DNA, but last year it was 9.81e+06 I know it is hard to tell as he is still in China, but just wondering if there is some insight as to what to expect when we are able to bring him home and what may be happening to cause this?

prosenthal : GL; I am sorry but I am not able to provide information on specific patients. This chat room is only for general issues. If you want to discuss individual cases then you need to discuss this with your child's trwating physician. realize that viral loads fluctuate and that white blood counts, and liver function tests may fluctuate with intercurtrent illnesses like colds etc.

Moderator : Question from offline: Why do some companies run clinical trials and then never tell us the results?

prosenthal : I do not know which clinical trials you are specifically referring to. I can only guess that negative trials would likely not be reported. I know of no pharmaceutical company who would not want to make sure EVERYONE was aware of a positive trial!

Moderator : nawlinsmom said: Follow-up Yes I have all of the answers to the questions you have mentioned I am concerned with the questions I should ask regarding the results. I assume the physician will discuss eveything in depth with me as he has regarding the procedure I just don't want to miss anything that I should have asked about if there is an important component

prosenthal : Glad these issues have been discussed. good luck with the biopsy.

Moderator : Question from offline: Do you think the interferon/ribavirin treatment for hepatitis C could have long-term psychotic side effects?

prosenthal : Based upon adult data, I am unaware of long-term psychotic side effects of combination interferon/ribavirin therapy. I am aware of reports of psychiatric disease including suicide ideation while on therapy. i am unaware of this continuing when the drugs are stopped.

Moderator : LB said: My 10 yr old daughter has a HBV DNA load of 100,000,000 copies / ml and a liver biopsy showing grade 3 inflammtion and stage 2 fibrosis. My doctor recommends just monitoring her at this time. At what point do you typically start treatment? Thank you very much!

prosenthal : LB: In a 10 yr old child with significant fibrosis (stage 2 out of 4) I typically discuss treatment at that point.

Moderator : Question from offline: Why do some doctors treat HBV kids with interferon and lamivudine – don’t the two drugs kind of cancel each other out?

prosenthal : The only FDA approved drugs for use in children with HBV are interferon and lamivudine. The combination of interferon and lamivudine is NOT FDA approved. I do not use these drugs in combination. If this is occuring, you should discuss this rationale and the data from the literature in children to support this.

Moderator : Question from offline: Do you know what percentage of people chronically infected with hepatitis B at birth end up seroconverting on their own at some point?

prosenthal : The answer to your question is a bit complicated. the majority of individuals who perinatally acquire HBV is exceedingly low. I believe estimates are about 0.1%/yr.

Moderator : Anymore questions?

Moderator : Thank you Dr. Rosenthal for sharing your knowledge and time. We’re so lucky to have you as our advisor. Well that’s it for tonight, everyone. We’re happy to have the opportunity to share information in this venue. Please remember that the information provided is for general educational purposes only and is intended to help participants learn about health and diagnosed diseases. Information provided is based on customary practices and products in the United States that may or may not be approved, available, or authorized by laws or regulations in other countries. As always be sure to discuss matters with your doctor prior to making any important decisions regarding therapy choices. Your doctor knows you best. Thank you for being here tonight and for the good questions you posed. We hope you enjoyed it and have learned something from this chat event and will return for other PKIDs’ Chat with the Experts. Goodnight.

Moderator : nawlinsmom said: Please thank Dr. Phil again for insightful information, I enjoyed this very much

prosenthal : It has been my pleasure being the first "expert" on this chat. Your questions were excellent and I hope you gained some valuable information. Best wishes for good health and a happy Thanksgiving celebration. Good night. Dr. Phil

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Important disclaimer: The information on pkids.org is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.