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Avatar universal

8 year old Partial Responder

Hi
I’m brand new on here but am hoping you can help.  I adopted my son from foster care when he was a baby and later learned that he had Hep C, genotype 1.  He is 8 years old now.  Last year, his biopsy indicated that he had mild scarring and inflammation, although it looked about the same as when he was 2.  Even so, he started  PegIntron and Ribavirin treatments in October, 2009.  Here is what happened:

October, 2009 – 285,000 (start)
December, 2009 – 231,000 (week 4)
Jan, Feb – around 200,000 (week 8)
March, 2010 – 150,000 (week 12)
April, 2010 – 40,000 (week 16)
May, 2010 – 4,000 (week 20)
June –  500 (week 24)
July -  700 (week 28)

His doctor said that if his viral count went up at all, she would stop the treatment.  So, she just informed us that she is stopping.  We are, however, allowed to use up the 3 week supply we have left.  I feel like he could still hit 0 and why can’t we give it until 48 weeks, like originally planned.  She said that he will not be able to sustain the 0 and will relapse.  Do you think we should fight to keep going if he hits 0 in the next couple weeks or do you think we should wait several years for the new drugs to be approved for children?  He has had no side effects, but I’m told that children do tolerate these drugs much better than adults.  He hasn’t grown and its hard to keep weight on him, so it still is affecting his little body.  It just feels like we are so close and we don't want to give up now.
Thanks,
Sue
52 Responses
Avatar universal
Personally, I would not give him any more meds at all - I would not continue to give him the meds that are left.  The doc is correct that statistics show that those who don't respond better than your son has don't have much of a chance at all of being successful with treatment.  There are better meds coming out in the next year or so and, personally, I would at least wait for the better stuff.  But, that's just my opinion and I am not a doctor.
Avatar universal
Thank you.  His doc said that the meds that are coming out soon will take at least 3 more years to be approved for children.
476246 tn?1418874514
I agree with meakea.

I would not want to expose my child with more of these meds, when he hardly responded. I think in this case he is called a non responder, as he never hit UND.

Usually treatment (genotypes 1 and 4) is discontinued, if you are not UND (undetected) by week 24.

Giving him a few more shots and taking more riba is not going to do anything, except expose him to more of these drugs.

I would wait for the new drugs, he will have much better chance to beat this.

My heart reaches out to you and your family.

Marcia
Avatar universal
The interferon did not work effectively with his immune system to suppress the virus.  Your doctor is correct by stating 48 weeks or antiviral therapy would not produce SVR.
He is unlikely to achieve SVR even with extending treatment to 72 weeks because he still had a viral load at 28 weeks.  In my opinion continuing treatment would only subject to these powerful drug needlessly.

I was a slow responder, did 72 weeks of treatment and relapsed.  I'm waiting for the protease inhibitors which will hopefully become part of the standard of care sometime next year.  The odds of achieving SVR with the addition of the PI's  are roughly 70 percent.  Those are very good odds.

Best of luck to you both.
Trinity
87972 tn?1322664839
Hi, and welcome to the discussion group.

We hear from very few pediatric patients in here; sorry to hear of your son’s illness, but it’s wonderful that you are taking such good care of him, and obviously love him so much.

I can’t see any reason to give him one more day of the drugs at this point; further treatment has only dismal chances of a successful endpoint.

I would seriously consider waiting to see what happens with the upcoming protease inhibitor class of drugs on the horizon; I’d bet he’d benefit greatly from them.

Here is a guide of current HCV treatments in various stages of development:

http://www.hcvdrugs.com/

The two closest to approval are ‘Telaprevir’ and ‘Boceprevir’; both are in late phase trial and Telaprevir seems poised for approval and subsequent market release as early as 2011. Both will be used initially in conjunction with the current interferon/ribavirin, but will increase efficacy, and in some cases might reduce treatment duration. This will reduce exposure to the interferon as well.

Good luck to you all—

Bill
Avatar universal
Okay...I didn't take into account that children might not fall into the category of getting the new meds when they first come out.  But still, since he has "mild" scarring/inflammation that hasn't progressed in the past 6 years, I would think that monitoring him until the new meds are approved for children would be prudent.  

I know it's hard for you to think of having put him through 28 weeks of treatment and then stopping without finishing but, since his VL is still there, I still believe the doc is right.  I've been through treatment and it's not kind to the body or mind...which is easily forgiven if treatment is successful but it doesn't appear that treatment is going to work for your son.  I am sorry about that.
Avatar universal
This doctor?? should have stoped this at week 12 when he didn't even have a one log drop. Wishing the best for your son and you.
Avatar universal
I agree with you on this.  Unfortunately, I'm finding from reading other Hep C forums that a very common frame of mind lately seems to be to just keep going with treatment as if the goal is to simply get to undetectable and then everything is okay.  There seems to be a lot of docs forgetting that getting to undetectable is only a small part of the battle.

To mcksu02...  Keep your son on a healthy diet with regular exercise and be mindful of any type of medications (both over the counter and prescription) the might be liver sensitive.  Always discuss these things with your doctor.  Take heart in the fact that many of us have had Hep C for many, many years (and I could go on with the manys).  You might consider getting a second opinion for your son with another hepatologist.  Many of us here have found that not all doctors are equal and it has served many of us well to switch doctors.
Avatar universal
If his disease continues to progress slowly he may be able to wait until they can treat him without ribaviran and interferon. It's probably 5-8 years away before they have reached that point. just a guess on time, but I think it's a reasonable one.

I don't know a lot about how quickly the disease generally progresses in children. With adults it is usually very slow, often 20-40 years before serious damage occurs. Many people after 40 years have no or minimal damage.

I wish you and your son the best. This must be very difficult for you.

- Dave
Avatar universal
From meakea..........."You might consider getting a second opinion for your son with another hepatologist.  Many of us here have found that not all doctors are equal and it has served many of us well to switch doctors."

Very good advice from meakea.
Avatar universal
We really like his doctor.  She has alot of experience and, up until my son, had a 100% cure rate with the many children she has treated.  We take him to one of the top childrens hospitals in the country.  She originally told us about the 12 week mark, but then had another child that responded very late, so maybe that it why she kept going.  In any case, we (my husband and I) didn't have all our facts right.  Up until a couple days ago, we thought 0 meant he was cured, and we thought he would get to 0, so we're still trying to digest and accept this.  My husband and I were just talking about how silly it is that we are so emotional about throwing away the meds.  We just had so much faith in those little bottles.  I don't know how to sit back and wait, and just do nothing for him.  Mom's aren't very good at just doing nothing. Thanks very much for all your replies - very, very helpful.  
Avatar universal
As a mom who helped a son through cancer treatments, I know exactly where you are coming from...I understand.  
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