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Avatar universal

worried out of my mind...hep C antibodies positive for my son

Hello all,

Looking for some desperately needed reassurance while we wait for results. My son is 16 and he has autoimmune alopecia. We wanted him to try an arthritis medicine called xeljanz. As part of the process, he had a lot of bloodwork done and his hep c antibodies test came out positive. This is a good kid, no drugs or sex or any risky behavior. Since my husband and I had him through IVF and the screening process covers hepc, hiv etc. I am assuming neither of us have it. I don't know his s/co ratio or anything. Doctor reordered the antibody test along with the RNA test. They said results in 2 to 3 days. The test was done on Tuesday. I am terrified and and cannot sleep, eat...anything. Hubby and son are in a similar state. Any chance this could be a false positive?
32 Responses
Avatar universal
Welcome new member.  I see as of now you are online. This isn't live chat and sometimes if may take longer for a reply so sometimes you may have to come back and check.

Without knowing the actual test results and the reference range it's hard to guess.  Without knowing this info, yes it's possable that's a false positive.  Very very rarely it could be a lab mistake.  The RNA will confirm or exclude whether your son has the active HCV.  If anything hopefully it's only the antibody and no active.virus.  Even if active HCV now the treatment is even much better with less side effects. For most people it takes decades for the virus to cause cirrhosis but for many long term exposure has many adverse potential effects.  Treatment can be expensive and maybe restricted but hopefully within a couple years even those with F0-F1 will be treated without a lot of hassle. Other members here may be better able to answer. Please inform is of the RNA results when known.

Best wishes
Avatar universal
Thanks for your response. I am worried sick thinking about how he can even get this in the first place. Routine blood draws? Dentist cleanings? A surgery for adenoids when he was 3? So so so scared.
Avatar universal
Just curious do you live in USA? state? Urban or more rural?

There have been cases of HCV being acquired from medical procedures involving blood to blood contact but they are very low in the USA.

"This is a good kid, no drugs or sex or any risky behavior." I don't mean to say nor believe the following applies to your son but as a warning to anyone.
Haven't we heard many times "not my child"

FYI to anyone sadly there has been a significant increase in acute HCV exposure for young white persons living in the rural Appalachian regions of the US.  

http://teenchallengeusa.com/news/new-study-shows-prescription-painkiller-abuse-increasing-hepatitis-c-cases

Even in MA.http://www.medicalnewstoday.com/articles/224559.php


4896357 tn?1360670904
Possibly not infected with HCV but you need to be ready to deal with it when you get the final blood work results. The good news is that hep c is now curable rather easily in most cases. Unclean dental instruments is a common source of infection. So are tattoos. Best wishes. This is the place to get all the info and support you need. There are a lot of great people here and a collective knowledge base greater than any one doctor could possess.
Avatar universal
Thank you Carl. All three of us go to the same dental practice. He does not have any tattoos. School-sports-home. Just so sick with worry and waiting. The alopecia for which we even started all this testing now seems trivial and just cosmetic compared to what we are facing now.

Also I started reading about Harvoni and viekira pak and how its not even tested in the pediatric population. We are originally from India and I even started playing scenarios of just pulling him out of school and going to India for treatment.
Avatar universal
Please take a deep breath and try to relax a little bit until you get the results. There is still a chance it's a false positive or your son is one of the 15 to 20 percent or so that spontaneously clears the virus.  

I don't know your or husband's age nor potential medical related exposure situations in India before you came to the US. The antibody test should be relativity inexpensive maybe $60 or so if not covered by insurance.  Depending on the situation it might be a good idea to also get tested.

If your son has active HCV and healthy F0-1 liver without other conditions warranting treatment ASAP. Waiting till next summer vacation to travel to India to at least start treatment for a few weeks then return to finish here in my non medical opinion would be one reasonable choice. If no treatment is still not available in the US with insurance and an affordable co-pay.

Best wishes for your family.
2059648 tn?1439766665
This is a slow progressing desease.  If your son does turn out to have Hepatitis C - his age is to his benefit.   Regardless, there is treatment that  has progressed on the fast tract.   It would be a very good idea for you and your husband to be tested also.   Lots of people don't know how they got Hepatitis C.   Get tested just to be sure of your own status.

Avatar universal
Thanks Jimmy. Very hard to relax or think about anything else.

As for a positive diagnosis, I am fairly confident about cures, but worried about wait time and cost because from my son's point of view, he wants his hair back and cannot get the alopecia treated with this going on. He's very depressed because of alopecia and almost quit school because of this sudden loss of total body hair. Now this scare over hep c and waiting is just utterly devastating.

My husband and I were screened before he was conceived as we did an IVF procedure for pregnancy. We tested negative for everything.
1747881 tn?1546175878
With all the other stuff going on with your son it is highly possible that the antibody test is cross reacting with something else, take a deep breath and try to relax, the RNA test will clear things up.
Avatar universal
Thanks for your response. I sincerely hope that is the case also. Praying and hoping constantly.
Avatar universal
Besides auto immune alopecia, he has auto immune hypothyroidism and had a cold during the blood draw. Hoping and hoping that it was one of these that cross reacted. Literally driving myself insane wondering about dental visits and his adenoid surgery.
Avatar universal
Viv.   You can get this virus anywhere.  Most of us that have Hep C have no clue where it originated.  I know as a mom your worried but I must tell you it's not as bad as it seems.  Your son is in no danger as it takes decades for it to damage your liver and we now have a cure.  The treatment is a pill taken for likely 12 weeks and then your cured.
I'm hoping that the test is not correct and that your son is virus free.  At his age everything in life is a challenge and I hope this virus is not one of them.
Keeping my fingers crossed for you.
......Kim
Avatar universal
Thanks Kim. It just seems so horrible for this kid to go tnrough so much when hes 16. The alopecia has already reduced his confidence and when finally there is medicine that helps alopecians, he cant even get on it. Im a basket case honestly. Id gladly switch places with him and take all his ailments myself if i could. Its nearly midnight and im still googling frantically. I wouldnt worry so much about hep c if it werent for the alopecia. He cannot even start treatment for it. Oh i really hope the results come tomorrow and this is just a horrible nightmare.
Avatar universal
I am going through hep c treatments now, (harvoni) I have had hep c for 4 years and to date no damage has been caused to my liver. It is a very slow acting virus, It could take 30 years before issues show themselves. Also your body can cure itself. Him being 16 is really in his favor! Not that it makes it any easier, I understand that! It is very unfortunate that as a young man he has had to take on and tackle so much so young. I think as a mom it is your duty to worry, my mother is great at that as well, but the less you let him see you worry, the easier it will be for him to deal with it! Harvoni is now considered a CURE for hep c! CURE! That's an amazing step for this disease! He is going to be fine! I wouldn't move out of the states I would stay put and maybe get a second opinion on all the issues at hand as soon as u find out the results of the labs. I don't know much about the other medical issue he had, but between you, your husband, your son and y'all's doctors, a plan can be made and executed! Comfort him and let him know it's going to be alright! God gives his toughest battles to his strongest warriors!! God bless you and your family!
Avatar universal
Thanks for your response Vick. Good luck on your treatments.

Our bigger picture is the alopecia for which we even started all the testing in the first place. Even after a sustained cure, I am not even sure if he can take any medicines to treat alopecia because we don't want the virus to reactivate.

Called doctor again in the morning and the front office lady says only partial results are in, the doctor is not there and only he can discuss. At this point i am only thinking worst case scenarios and am beyond any reason.

I am crying constantly and this forum is the only place where I am even discussing this. My husband, son, and I are just in this horrible limbo waiting to know.

Avatar universal
Hello all, just wanted to update. The second test they did for antibodies came back NEGATIVE! The doc just called me. The RNA test will come back on Monday, but doc says it is highly unlikely it will show virus.  

Is this good news?Are we truly in the clear?
Avatar universal
99+ Yes in my opinion.  Please take a break enjoy yourselves this weekend.  After you get the RNA results on monday. We will be looking for your reply and exuberant excitement.
Avatar universal
Yay!! That's great news! Good luck with everything!
Avatar universal
You may want to search all of MedHelp top right search box

As of my reply these are the results
Search Results for alopecia
Posts (1708) Articles (1) Forums & Groups (2) User Journals (16) Blogs (3)

If you browse through them you may find appropriate related info and possible communities or groups to ask or answer questions.

I late and leaving now for a music festival and camping.

Avatar universal
Thanks  jimmy. Have a good weekend and enjoy your music festival. I will keep my prayers and hope for closure on monday.
Avatar universal
Thanks Vick. Hope everything's ok on Monday.
7469840 tn?1409845836
Are you going to Burning Man Jimmy?
Avatar universal
I am late to this party - nothing new for me in that.  What I wanted to say has pretty much been said by others already.  

FIRST, though,  it is part of a Mom's job to worry, but it is ALSO a part to stand firm in front of her child(ren) and say, "we WILL get through this - one step at a time, maybe not as easily as we wish but we will, and together, as a family."  Also, hugs and smiles give your child confidence!  YOU can do this - you are a Mom and, never mind what kind of person, or woman, we are before, motherhood gives strength we never knew we had!  Deep breath, smile at your son and husband and move forward, one step at a time!  

Next, have you all suggested to your son to shave his head, and wear a masculine earring thingy, like so many young people?  I am not talking about the 'gang member' look, but surely you have noticed in Tv shows and news pictures, where young, successful boys and men are dressed nicely, even 'Gentleman Quarter' lay and have smooth shaven heads and faces?  

My point is that youth doesn't like to be different, but, sometimes, one can become a trendsetter instead of a follower.  He may not be interested in the idea, but it is worth a thought and a discussion.  

Next, the Antibody tests in my area are $28.00, if your insurance doesn't cover them - this for you and your husband.  My husband just had one in June as, now that I am SVR (Hep C Speak for cured), I (notice 'I' - he was not in the least concerned) wanted to be sure I had not given the Hep C to him while I was still infected.   I do think that you and your Husband should have the antibody tests just for your own peace of mind, or, in case either one (or both) have ever had a blood transfusion, etc in your past.  So many people get Hep C and don't know it for years and years - or ever.

As to how he got it, it doesn't matter - what matters is IF he has it, to get him treated for it, although, it sounds like that will NOT be a problem from the results of that second Antibody test.

Again, it sounds like the first test was a false positive - as he had other things going on, but, in any instance, we are here to support you, so that you can support him and your husband.

Chin up, my dear, dry those eyes, and move forward.  YOU can do this!

Oh, and please don't be offended by anything I have said, or the suggestion about changing his look, it is meant in the best possible way.  if it doesn't work for him, or the family then just accept that it was meant to be helpful and ignore it.

God bless all three of you,

Pat
Avatar universal
Thanks for your well meaning and kind response Pat. It was not in the least offensive. It was very warm and caring.

I am still waiting. Still worrying and driving myself crazy. No word from doctor yet.
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