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My baby has HepC
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My baby has HepC

Hey guys,
Some of you may remember me I come on here and there to benefit from your great wisdom.  I adopted 2 children from an HepC infected birth mom.  My son who is now 5 tested + for the antibody but never positive for the virus so they have cleared him.  However, we were waiting till my daughter was 2 to test her for the virus.  I got the results from her PCR RNA and she IS positive.  I am devistated for her.  They also said her liver levels were elevated which scares me most of all.  They have not given me the actual numbers but they did say the virus was showing VERY high levels in her system.  We are waiting on the call back to see were to go from here.  I just need some advice on what I should be doing to make sure she gets the best care possible.  Is there medication she can take???  What doctors or specialist will they send her too.  Sorry for all the questions I am just so very scared and unsure.

Scared Mommy
Terri
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I know this must come as a shock but it may not be nearly as bad as it seems.

First of all, hepatitis c in children is generally much less serious than with adults and may not even need treatment.

The other thing you should keep in mind is that high levels of the virus don't mean anything significant. Virus goes up and down all the time and is not related to liver damage. My only advice is to make sure your baby sees a liver speicalist (hepatologist) as they are more in touch with the latest treatments. Hepatologists are usually found at your larger teaching hospitals.

Here's a little more reading on the subject.
http://www.clevelandclinicmeded.com/hcv/childhcv.htm


Try not to worry.

-- Jim
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Jim
Thanks so much for your kind words.  It is so hard not to fear the worst.  Her birth mom is in-stage liver disease and will die without a transplant, but she is not eligible for a transplant because she can't kick her Heroine habit.  I guess I just have seen first hand what not doing anything can do.  I just want to give her the best chances she can get.

Terri
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Avatar_m_tn
From the article above:

"...Spontaneous resolution of HCV infection occurs in approximately 50% of HCV-infected infants within the first 3 years of life, so treatment for HCV infection should not be considered before 3 years of age..."

What this means is that according to the article your baby may get rid of the virus on her own during the next year, which should be hopeful news. I'm sure the liver specialist you see will explain things more in detail.

Be well.

-- Jim
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Jim,
That is the BEST news I could have gotten today.  Thanks for that breath of fresh air.  I felt as though I was suffocating and I finally got to come up for air.

Terri
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I'm so sorry to hear of your dilemma.  It was good to see that your son tested clear.

It looks like Jim has given you some very good sound advice. Hopefully it has helped put your mind a bit at ease with respect to your daughter until she is typed and staged for the disease so that you know where she is currently at and what options are available to proceed.

It's sad to learn of young ones who have their entire lives ahead of them are subjected to such illnesses through no fault of their own.  Keep us posted and do not hessitate to turn here for help and/or support for both your daughter and yourself as I'm sure as her mother you too are suffering.

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Thanks so much.  I guess that is what bothers me the most.  I am gonna pray that she cures this herself but her immune system is already comprimised because she was 3months premature and she develope Primary Immunodeficiency.  She gets sick a lot easier than most kids and she has a hard time fighting stuff off.  I just hope that with God's help she can kick this.  I am gonna change her diet to only include healthy food.  Do you guys have any reccommendations as to what we do for her diet.

Terri
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Just remember, your amazing perfect little girl is STILL just that.  Although it is difficult to remember that sometimes with a 2 year old! haha.  I just had a discussion with my daughter's ped yesterday about not wanting her to have to deal with people treating her differently.  Honestly and truly there is NO NEED for anyone to know.  I even got one of those daycare/camp/school forms that gave her a clean bill of health.  They need not do anything different with our children except follow the universal precautions they should follow for EVERYONE.  Therefore, our children should NOT be treated different.  The sad fact is, if we shared their hep c status with anyone, they WOULD be treated different, and it isn't right.  So, us mama bears fiercely protect our baby bears in any way we can.  That means keeping quiet.  
We see Maureen Jonas in Boston, you could definitely post the name of your daughters specialist when you get it.  She doesn't even follow hep c kids after initial consultation.  She said they do very very well, and it is unnecessary, until it comes time for treatment, to do routine bloodwork on them etc.  Anyway, I really would be happy to chat anytime.  I completely empathize with crying until you can't cry anymore.  I even have an incredible sense of guilt, having treated myself, that I am no longer "in this with her", if that makes sense.  And it is HARD to cope with and accept.  I do understand how you feel, but I can't help but be overjoyed for your babies that they have a mama as great as you.  She will do great!  I will try to figure out how to post my email on here so we can chat :)  There are only a few of us in this boat, and people who aren't simply cannot understand.
It is when you are in ths boat that you want to scream from the rooftops that although the chance of transmission is small, it DOES happen, and has an incredibly profound impact on your life.  It is nothing that can be brushed off.  Anyway, enough of my ramblings for tonight.  I will figure out how to post my email and get back to you soon!  
In the mean time, many prayers and positive thoughts to you and your kiddos!  One day at a time mama. :)
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Jim,
Thanks so much you have done your research.  I am so glad I have somewhere I can turn to since my docs office NEVER calls me back

Terri
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There are a few members here who were infected at birth.  Most have lived remarkable active and full lives and some have treated in their 20's.  There is a post from dancegirl54 just yesterday about her son, Eric, who is still in grammar school (I think) and is treating now and has had a negative PCR.  

I hope you will find a good hepatologist who can guide you and your son.  He is in good hands (with you), I believe.  From one adoptive parent to another, this is just one of the many difficult things you will have to deal with as your children navigate the path to adulthood. I wish you much luck and an abundance of patience.
frijole
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Hi there,
I just wanted to reassure you about your child.  She will be ok!  I was infected immediately after birth via a blood transfusion.  If I hadn't donated blood when I turned 18, I never would have known.  My daughter, who is going to be 3 in February, got hep c via vertical transmission from me.  She is perfectly amazing! (in my unbiased motherly opinion! ha)  We are seeing a top pedi gastro in Boston, who is actively involved in hep c research.  Last time we saw her she was pushing treatment sometime before school age.  We will consult with her again within a few months, and I am hoping she has shifted her focus a little bit to waiting for better treatments.  
Jim was very very right that children who get Hep C do very well.  They have a pretty high chance of spontaneous clearance, and can typically wait many many years to treat if they do not clear spontaneously.  
I also wanted to comment that their LFT's can be quite high, but as they get older, they tend to normalize.  Also, my daughters VL is very high, however, her liver functions have pretty much normalized at this point.
I'd be happy to talk any time.  I remember all too well how devastating it is to get news like that.  I cried for days for my sweet baby girl, and still do.  It is a very complicated emotional roller coaster. You can post here and we can hopefully get in touch off the board!
Your son and daughter are very very lucky to have you and I hope she falls into the 50% who clear!!!
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Thanks so much for your words of encouragement.  I think they are going to send us to the gastro in Austin, Texas.  I wonder if I can post his name when they give it to me.  I just want to make sure I don't end up with someone who doesn't know what he is doing.  

I think I have cried till I can't cry anymore. She is just such an amazind child and I hate the thought of her getting treated badly because people are ignorant.  I am so glad there is a place for me to get info from real people dealing with this.  The pediatrician said that she has a 25-50% chance of spontaneous remission before they turn 3. However, he said since she is already 2 he thinks her chances of kicking it naturally are much lower. I have to take her on Monday to gether type and another liver function.  I will keep you updated and definately pray for you and your little girl too.


Terri
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Avatar_m_tn
"Healthy" diets may differ for growing children as opposed to us adults.

While some might suggest there is a "liver healthy" diet -- lower fat/protein, higher complex carbs, etc --  probably best to consult with a pediatrician before changing anything, including any vitamins or supplements. You don't want to make changes that might adversly affect her growth as babies' needs are different from ours.  

Be well.

-- Jim
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You two are very strong wonderful people. I can't imagine what you must be going through.My prayers to you.I hope your lives are filled with good news easysite.com/donnypics as time goes on and your children experience all the miracles of life.
Be well,
Don
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