Hep C results on baby- Need advise

[t2622b]

Hi guys,
I posted about a week ago when I found out that my 2year old daughter had tested postivie for Hep C.  They had done a HCV RNA qualitative test that showed +.  The next day they ordered the HCV RNA PCR quantitative and I got the results today.  I don't understand them so maybe you could help.  It simply reads

Hepatitis C Quantitation 135,520 IU/ML
HCV log10   5.132 log10 IU/ML
Hepatitis C Genotype  1a

I am sooo scared because from what I have read that is NOT a good genotype to have.  Please help, I don't really know where to turn!!!!!!

Thanks
Terri
Scared Mommy

[amommy]

Hang in there, it is going to be ok!  I would like to get in touch with you.  Visit here http://easysite.com/donnypics And please read!
Yes, it seems as if your daughter does in fact have hep c. geno type 1a, and a very low viral load of 135,520.
It is true that geno 1 is the hardest to treat, BUT it is still treatable!  And with the new drugs coming down the pike, I am optimistic that it will be able to be treated with a much shorter course of treatment that is not as difficult to tolerate.  I know how worried you are.  I truly do.  Please go to that site, and read.  You can contact me through there.  
One of the important things to remember is that your child is in no iminent danger.  I remember pretty much feeling like my daughter may go into liver failure at any given moment, and it is just plain NOT going to happen.  I would constantly be checking her color, checking her eyes to see if they were yellow, analzying her poop etc.  It really is that worrisome, but the GOOD news is, our children are absolutely not in any immediate danger or need for treatment!  Please hang in there, and try to learn as much as you can, and try (i know this is impossible) not to worry.  You are an awesome mommy and your kiddo is going to be ok!

[t2622b]

I tried to go to that site but it asks for a login and I don't have one.  What do you suggest?

[GrandmaA]

Her immune system could overcome the disease in the acute stage. We have 2 people in my support group who overcame the hepatitis C in it's acute stage with just their own strong immune systems. 15-20% of people are able to do this. Help keep her immune system strong.

[amommy]

you actually don't need a log in, you can read the "NEWS" message then click on messages where you will be able to read what is there, and also post :)

[niceguy2007]

dont worry ur kid will be fine. genotype 1 also moves quite slowly(usualy takes 30 years for significant damage to occur.) new drugs r coming out to make treatment easy, so just take a deep breath n relax cuz ur daughter wil be fine. try to develop her taste for daikins, they r great for the liver.

[t2622b]

I tried going into the message board but I get an error saying the site is limited to 10 messages. What do you suggest?  Sorry but I really want to get in touch with you and I seem to be a computer idiot

[t2622b]

Thanks guys.  I sure hope it is slow moving but one of her liver levels came back high.  They did another one this morning I think it is called ALT or something like that.  They should have it back tomorrow.  She was a premature infant that was exposed to heroine (she was adopted)  Her bith mom has had HepC for almost 10 years and is already in endstage liver disease.  They have given her 1 year to live unless she gets a transplant.  But she can't get a transplant because she is an addict that won't treat her addiction.  I will keep you guys updated on her liver levels.  How proactive should I be when it comes to treatments.  I know she is to young to treat now but when should I start looking into options????  I feel like she is being attacked by some internal DEMON that I can't fight.  All I can do is do research and make good decisions on her behalf.  I am worried about her immune system fighting it off because the doc said that if she was gonna fight it she would have already done so.  She said some kids that get it at birth can fight it off by age three but since BreAnna is 2 she probably won't be able to.  Also she has Primary Immunodificiency because of her prematurity.  It just means her immune system is weaker then most kids.  Thanks for your time and sorry about the  book.

Scared Mommy

[niceguy2007]

maybe her birthmom has had it for more than 10 yrs n was diagnosed late?
ANyhow do trust in God, the demons r not for us to fight.

[Ocala]

Never heard of daikins. What is it.
Ocala gal

[amicraxy]

I have never been this close to people reaching out for help and others giving help.  I have never been sick before this tx except maybe the effects of hep-c  This tx has opened my eyes. I wish I could make everyone better.

[niceguy2007]

ocala daikin is an asian vegetable that looks like a big white carrot and tastes almost exactly like a radish. u can also eat its leaves, raw or cooked.

[t2622b]

I wish I could say she was just diagnosed late but she was getting regularly tested since she was an addict on methodone and she tested negative till 1996 when she was pregnant with on of her other children.  She has given birth 6 times and I have adopted 2 of her children, but only the baby got it.  My son is 5 and he got it at birth but was able to fight it off.  He still carries the antibody but he has NEVER tested + for the actual virus.  He was treated with an antiviral treatment when he was a couple of months old for a respiratory virus that he had contracted, they think that may have spared him from this.  I am so grateful that there is a place I can turn because the information that I find elsewhere is just so darn confusing, and the docs just keep giving us WORST CASE SCENARIO, which is pretty glim.  Thanks again for all your help

Terri

[crazycanuck]

hi just read your post to amommy.  you mentioned 15-20% in your support group overcame hep c with their own immune system without treatment.  do they still show positive in their bloodwork for hepatitis c?

[amommy]

Hi there!
You can reach me on gmail.com  jmpmedhelp is my name!  I hope you get this :)  
I hope you are feeling better about everything tonight.  I'm curious what your doctors are telling you, and I hope they are not needlessly scaring you.  
Give those kiddos extra big hugs tonight!  And I'll be looking out for your email :)

[Sally01]

Just a good well wish for your daughter.  Like others I really feel with a low viral load and as young as she is that she will be fine.. There are several new drugs with much less sides on the way.  Like in the next year or two. Read up and and I think you will see that her future is secure.  Keep us posted

[jboyhk]

If you clear it naturally you will always show positive for the antibodies but negative viral count.

[dancegirl54]

Dear terri - my son is 18 and a 1a and currently treating.  I passed it to him at birth and we were only diagnosed 2 yrs ago.  He was undetectable at 4 weeks treatment.  So, he had this since BIRTH and made it to 18 without any outward effects. There is a lot of hope. Your baby can live a NORMAL life