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please help! 16yo son tested positive for hepatitis c
ok, im so freeked out. our story starts several weeks back. my son who is 16 has several episodes of fatigue, with back and head ache. take him to doc and says nothings wrong. this had happened twice since may. he hasnt felt good in a while. about a month ago it started again, this time he had the back, head, and neck ache, very tired. a week later he starts with the fever, soar throat, and ear ache, but no sign of infection. a round of zithromax does nothing, several days later, no better, now augmention, nothing changes. take him to another doc, they do tests and find his liver and spleen are tender and enlarged, along with elevated liver enzymes, bilirubine in urine, and enlarged lymphnodes all over.. treat and test him for lyme, mono, cat scratch, put him on doxycyclene, nothing changes. the fever lasted 10 days. take him back to 1st doc, run tests again, new ones, and yesterday we found out he tested positive for hep c. how and why? they still dont know why he is having so much pain in his ear and throat, and no infection. hes eating 800mg motrin like their candy, for 2 weeks now. did ct scan on head neck and chest today, to check lymphnodes in chest and to see about his ear and throat. im sooooo scared. what about lyphoma and hcv, double the chance of getting it. what are they missing? why is he showing signs of liver damage so quickly? hcv is a slow process, isnt it? my brother just died in feb due to hepc. now my child who has never drank, used drugs, or had multiple sex partners has it. could this really be happening to us? i need answers, and i need them quick.
Best of luck to you and your son. Keep us posted on the doctors' findings. I do hope you are working with a hospital that has knowledgable liver experts (Hepatologists), since many other types of doctors and specialists are not extremely up-to-date on HCV and related issues, and properly interpreting current tests. Do you know what specialists are treating your son? Also whether they routinely treat and cure HCV, or deal with other liver related issues, performing transplants, etc??? If HCV really is involved, you need top notch doctors with Hepatology specific backgrounds, in order to get the best treatment for your son.
How about you, and your own 'elevated enzymes'???? Are you planning to follow up with a Hepatologist yourself, to get the HCV PCR (RNA) testing, and to determine why you frequently have abnormal enzymes? I think this also needs immediate attention, and it may also help you answer questions about your own medical situation. If, as you say, you have been tested before for HCV antibodies, then someone had a suspiscion about your having the virus....and you still could have it, even with a negative HCV antibody test. Occult HCV is more common than previously thought, and elevated enzymes are always a 'red flag'.
Good Luck on everything.
DoubleDose
How about you, and your own 'elevated enzymes'???? Are you planning to follow up with a Hepatologist yourself, to get the HCV PCR (RNA) testing, and to determine why you frequently have abnormal enzymes? I think this also needs immediate attention, and it may also help you answer questions about your own medical situation. If, as you say, you have been tested before for HCV antibodies, then someone had a suspiscion about your having the virus....and you still could have it, even with a negative HCV antibody test. Occult HCV is more common than previously thought, and elevated enzymes are always a 'red flag'.
Good Luck on everything.
DoubleDose
jusy wanted to tell you guys thank you for listing to me and trying to help my son. we still dont kno much more than we did. now the docs are telling me he cant have mono cuz he dosent have the epstienbarr or the cytomegalic virus in his blood. cant have mono without it they said. also telling me his ldh is high, something bout tissue damage somewhere. still waiting on the hepc rna. im so concerned that it might be lymphoma, along with hepc. what will we do then? ive constantly been asking my son if he has any new symptoms, he always says no. same ole stuff. but i did find out that he has been having night sweats for about 2 years. freeked out. i said again have you been itching, he always tells me no, but after the night sweat thing he said, yeah, my back used to itch all the time. great, another symptom of lymphoma. we have an appt. on tues for a childrens gastrontoligist, its 3 hpurs away, but id drive to the ends of the earth to get him well!!!! he seems a little better today, his eyes dont look so sunk in, and dark. hes lost so much weight, he used to be a strapping 175, now hes a pathetic 155. he said hes told his best friend and his gf. they treat him no different. good, his gf said, well just have to b more careful. im hopeing all this hepc and lymphoma stuff is wrong. if he could just get his energy back, he feel alot better. i have no clue what the doc is going to do on tues. dont know if they will admit him and do tests, or just review his recored from the past month, im clueless. i really hope they do a liver byopsi, and a lymphnode byopsi. atleast wed know for sure .. still holding out hope for the best!!!!! wish us luck, keep him in your prayers. thanks, taylors mom.
In your original post you asked why the liver damage was progressing so quickly has your son had a liver biopsy? If he hasn't what are you basing the "liver damage"on? If he's taking 800mg of ibuprofen that will cause the AST and ALT enzymes both to be elevated. As far as his liver being tender and enlarged,have you ever gotten home from a week long cruise where you started with bloody mary's around 10:30 A.M. and drank until the wee hrs of the next morning and started the process again after 5-6 hrs sleep? Believe me, your liver will be tender and inflamed. Im not trying to minimize anything. HCV diagnosis is hard, even for an adult.I can only imagine what your going thru. But until the check the viral load level and do a liver biopsy,your not going to know too much.FYI bill1954 is a wealth of knowledge. good luck and I didnt mean to sound like imnot empathic (i am believe me) But you need to get the HCV RNA work done and Have a liver biopsy done to check for liver damage is bloodwork shows active chronic HCV. Again good luck and take things 1 step at a time.
I fully agree with your comment, copyman. Get this young man to a really good doctor, in a teaching hospital, as quickly as possible,and find out what is really going on. Don't go round and round with your doctor, being confused, and worrying yourself sick. Take the time, and get the right answers!! If you provide your location, I am sure that forum members will be quick to make some solid recommendations on experienced doctors.
DoubleDose
DoubleDose
The key words here are what you posted, "do you ever feel like doctors dont have a clue what they are doing". If I was in your shoes with a sick child I would drive to a teaching hospital, usually at a university and see a HEPATOLOGIST. I don't care how far away it is I would go and get answers! Sounds like this has been going on way to long without answers. No child, or adult for that matter should suffer like that.
Best of luck
Best of luck
Your son's symptoms sound most like Mono...this would account for possible liver enzyme elevations on blood tests, but would NOT account for a positive HCV antibody test. Of course, having the positive antibody result for HCV does not automatically mean he would have HCV, only that he has been exposed and has the antibodies. The HCV RNA or PCR viral load test, as most label it, will tell you definitively whether there is any virus present in the blood, and if there is, it will tell you the amount of virus per unit of blood.
Again, I have to say that I feel you need to consult a liver expert (Hepatologist) to get a clear understanding of what is going on with your son, and for your own case, you need to find out why your liver enzymes are sometimes elevated. I think it makes lots of sense for you also to have the HCV PCR viral load test, to make sure that you do not harbor the virus...even though your antibody test was negative. This CAN happen, and it is called "Occult HCV".
See the right doctors, have faith in the medical community, and don't freak out about your son's situation. Even in the worst case scenario, even if he does have HCV, the odds are really great that he can be cured of the infection. I think his current problem sounds like Mono, and HCV rarely presents with such aggressive, flu-like symptoms...especially in the chronic phase. The mono will resolve..I had a similar infection in my twenties, with the same symptoms...and it was a month long bout with mono.
DoubleDose
Again, I have to say that I feel you need to consult a liver expert (Hepatologist) to get a clear understanding of what is going on with your son, and for your own case, you need to find out why your liver enzymes are sometimes elevated. I think it makes lots of sense for you also to have the HCV PCR viral load test, to make sure that you do not harbor the virus...even though your antibody test was negative. This CAN happen, and it is called "Occult HCV".
See the right doctors, have faith in the medical community, and don't freak out about your son's situation. Even in the worst case scenario, even if he does have HCV, the odds are really great that he can be cured of the infection. I think his current problem sounds like Mono, and HCV rarely presents with such aggressive, flu-like symptoms...especially in the chronic phase. The mono will resolve..I had a similar infection in my twenties, with the same symptoms...and it was a month long bout with mono.
DoubleDose
ok,do you ever feel like doctores dont have a clue what they are doing? i feel like i know more then his doc. anyway,were still waiting on the call for us to load up and go to the hospital for more testing, so in the meantime taylors severe sore throat has gotten even worse to where he tries not to move his throat when he talks, just kinda mumbles. he drools in a cup, cant eat, cant sleep for the pain, very tired, same ole stuff. finally his doc referred us to an ent, which we seen today. he was positive that he had mono. i told him hes been tested 3 times for that, plus the cmv, and ebv, negitive on all three. did blood test and had a person look at it, guess what, he has mono. now, that scares me, ive been reading that when you have hep c, and you get mono, it is really bad on your liver. is that true, does anyone know? next question, i no mono can induce hepatitis, but can it induce hepatitis c? or could it make him have a positive screening for hep c? we still havent got the results back from the last blood test for the hcv rna test. is so confused. so if he was positive for hcv, does that mean he for sure has it, or just the antibody, or what? i know if he is pos for the rna he has it, right? i sooo need to see a liver doc, what they are waiting for beats me. so far, little by little things are looking better. he feels worse, but they dont think he has lymphoma, which is a good thing, now we know why his throat is so sore, now were just waiting on the hcv rna thing. maybe, its just a real bad case of mono, and the positive hcv antibody was a lab mistake. atleast thats what im hoping for. a girl can dream.
Thanks for your reply and follow up information. Here are some thoughts:
1. If you 'sometimes have elevated liver enzymes' you really do need to have the HCV RNA or PCR viral load test performed. There is a real possibility that you could have the virus, but not show a response on the standard antibody test. If that were the case, you could have passed it to your son at birth, or through familial contact. I'm not saying there is a high probability, but this IS a possibility. The elevated liver enzymes are a major RED FLAG for you personally. Make sure that you at lease get tested for the VIRUS, not the antibodies, using a very sensitive PCR test for HCV viral load.
2. To me, your son's medical symptoms MIGHT be connected to being HCV positive, if he indeed turns out to have the virus in his blood. It is not the end of the world, and today the infection can be CURED for the majority of those affected. During my early, acute phase of HCV I had swollen lymph nodes, and glands, along with a host of physical symptoms, including fatigue, and gastro-intestinal disturbances. I have read of others with enlarged spleens, and other internal organ related issues. I believe that there is also a good chance that your son's infection could be new, or recent, and could be cured even more easily than most with the chronic infection.
3. Another possibility is that your son has something else entirely, and is only HCV positive for the antibodies. In this case the PCR HCV RNA testing would show an undetected viral load. It could be any number of illnesses including Mono, or similar viral infections that are treatable and will not affect his future life. Even is he does have HCV, he can most likely be cured. With the newer combination therapies using the inhibitor class drugs and interferon, he might only have to do three to six months of therapy, and have a very high probability that the virus will be eradicated, and never return. Please try to stay calm, and to realize that there is MUCH hope in your son's situation, EVEN IF he does turn out to have an active HCV infection.
Keep us informed of events in your son's testing, and please do get yourself checked out by a liver specialist, and have the HCV PCR test done. It could answer some questions either way.
DoubleDose
1. If you 'sometimes have elevated liver enzymes' you really do need to have the HCV RNA or PCR viral load test performed. There is a real possibility that you could have the virus, but not show a response on the standard antibody test. If that were the case, you could have passed it to your son at birth, or through familial contact. I'm not saying there is a high probability, but this IS a possibility. The elevated liver enzymes are a major RED FLAG for you personally. Make sure that you at lease get tested for the VIRUS, not the antibodies, using a very sensitive PCR test for HCV viral load.
2. To me, your son's medical symptoms MIGHT be connected to being HCV positive, if he indeed turns out to have the virus in his blood. It is not the end of the world, and today the infection can be CURED for the majority of those affected. During my early, acute phase of HCV I had swollen lymph nodes, and glands, along with a host of physical symptoms, including fatigue, and gastro-intestinal disturbances. I have read of others with enlarged spleens, and other internal organ related issues. I believe that there is also a good chance that your son's infection could be new, or recent, and could be cured even more easily than most with the chronic infection.
3. Another possibility is that your son has something else entirely, and is only HCV positive for the antibodies. In this case the PCR HCV RNA testing would show an undetected viral load. It could be any number of illnesses including Mono, or similar viral infections that are treatable and will not affect his future life. Even is he does have HCV, he can most likely be cured. With the newer combination therapies using the inhibitor class drugs and interferon, he might only have to do three to six months of therapy, and have a very high probability that the virus will be eradicated, and never return. Please try to stay calm, and to realize that there is MUCH hope in your son's situation, EVEN IF he does turn out to have an active HCV infection.
Keep us informed of events in your son's testing, and please do get yourself checked out by a liver specialist, and have the HCV PCR test done. It could answer some questions either way.
DoubleDose
After all is said and done, the answer to your question about his HCV lies in the RNA test results. At that point, all the talk about enzymes, etc. is superfluous. If Taylor is HCV RNA negative, then you can move away from Hep C. If positive for RNA, it will eventually need to be addressed.
As far as any other problems are concerned, they will have to be dealt with as they come. He might indeed have another form of liver disease, but I’m not sure a biopsy is indicated given his history so far. How high are his lever enzymes elevated?
The LDL/HDL is probably referring to his cholesterol levels; this can typically be corrected with diet or meds if necessary. Given the typical American diet, it’s not surprising to hear a teenager might have problems with cholesterol.
Take a deep breath, and let us know how the HCV RNA test results go.
Best to both of you—
Bill
As far as any other problems are concerned, they will have to be dealt with as they come. He might indeed have another form of liver disease, but I’m not sure a biopsy is indicated given his history so far. How high are his lever enzymes elevated?
The LDL/HDL is probably referring to his cholesterol levels; this can typically be corrected with diet or meds if necessary. Given the typical American diet, it’s not surprising to hear a teenager might have problems with cholesterol.
Take a deep breath, and let us know how the HCV RNA test results go.
Best to both of you—
Bill
thank u for your response. here are some answers, yes i have been tested for hcv, twice. i sometimes have elevated liver enzymes. it was neg. ok, my son tested positive for the antibodys, is this right? they are now waiting on the results of another test, something about r n a. not really sure. the doc doesent know anything. i no more then him. he cant answer any of my questions. they said today that the ct scan showed nothing wrong with the head and neck, no mass or inflamation, yet his throat is so soar he could barley talk this morning. it also showed no sign of enlarged chest lymphnodes, thank GOD!!! so he dosent think its lymphoma, i still want a biospie. something about his ldh, or hdh, or something like that, is high. something to do with muscle. he still has all the same symptoms. lymphnodes in neck, arm, groin, enlarged, moveable, not tender. severe fatigue, severe soar thraot and ear. i have a question, how could he already be showing signs of liver damage, if he hasnt had it for very long? elevated liver enzymes, biliribine in urine, and the blood tests that are so confusing to remember, they show he is having damage. we are waiting on the call to tell us to go to the hospital. atleast there maybe they can answer some questions. oh, and the question about my son and brother, no they wernt close, but he is really good friends with my brothers step son, and was down there a little. but like he said,"its not like i walked around on my hands and knees all the time with open cuts on them" u no, we really dont care where it came from, we just want him well. hes 16, an awsome kid, very beautiful, 5 11", long brown shaggy hair, georgus brown eyes, dark skin, very althletic, enjoys all things, was a really good skatboarder for a couple of years, till he got his drivers license. won state last year for power lifting, just your all american boy, hes a junior this year, hes made it to school a total of 3 days this year. he has his whole life infront of him, and now this. im sooooo scared for him. i try to keep my suppermassive meltdowns hid behind the locked bathroom door. i dont want him to see how worried i am. i just want to try to keep him as happy as i can. sorry i keep rambling on, ive had no one to talk to about this, were trying to keep it under wraps till we get more info. im afraid his friends will treat him different, his girlfriend will break up with him, and i dont want that, the less stress, the better. so anyway, i hope ive answered some of your questions. please pray for him and pass it on, thank you. taylors mom.
A few questions: Have you been tested for HCV? Have you ever been exposed to the virus to your knowledge? You might want to have both an antibody test done (standard HCV testing) AND a PCR test for the actual virus. Sometimes a person can be negative on the antibody test, and still have the virus.(a form of Occult HCV) On the other hand, some people are HCV positive on the standard antibody test for HCV, but do not have any HCV virus in their blood. They generally are those who cleared the virus spontaneously. In THESE instances, they no longer have HCV, just antibodies. Has your son had an HCV PCR test, to determine if there is a viral load? This is very important! Not the antibody test, but a PCR that measures viral load.
Somewhat coincidental that your brother died from HCV, and your son apparently is HCV positive. How close was your son with your brother over the years, and could there have been any potential for being exposed to your brother's blood on any occasion?
Has your son had any notable surgeries, blood transfusions, or other potential exposures to other blood? My concern is the level of symptoms and physical problems that your son is exhibiting. If they are indeed connected to HCV on a causal basis, then you will need to see a good Hepatologist to discuss treatment options. First you need to get more detailed information, and probably also consult with a liver specialist. Maybe your son had a recent accidental exposure to the virus, and is having the 'acute phase' of the infection. If this is his first indication of any problems, it may indeed be a recent infection, which is generally easier to treat, and CURE, if done during acute phase, rather than allowing the virus to become chronic, as it almost always does become.
Please let us know what else you find out, and if you can provide some feedback on my questions above, we might be able to provide a little more insight.
I am sorry to hear about your son's problems.
DoubleDose
Somewhat coincidental that your brother died from HCV, and your son apparently is HCV positive. How close was your son with your brother over the years, and could there have been any potential for being exposed to your brother's blood on any occasion?
Has your son had any notable surgeries, blood transfusions, or other potential exposures to other blood? My concern is the level of symptoms and physical problems that your son is exhibiting. If they are indeed connected to HCV on a causal basis, then you will need to see a good Hepatologist to discuss treatment options. First you need to get more detailed information, and probably also consult with a liver specialist. Maybe your son had a recent accidental exposure to the virus, and is having the 'acute phase' of the infection. If this is his first indication of any problems, it may indeed be a recent infection, which is generally easier to treat, and CURE, if done during acute phase, rather than allowing the virus to become chronic, as it almost always does become.
Please let us know what else you find out, and if you can provide some feedback on my questions above, we might be able to provide a little more insight.
I am sorry to hear about your son's problems.
DoubleDose
I don't have an answer for you. I just posted my own question but I
just wanted you to know that I'm praying that your son will be ok.
just wanted you to know that I'm praying that your son will be ok.
And once you determine if he has active HCV RNA virus, then the next question I would ask is if he could possibly be in the acute stage of infection, that is, contracted it very recently.
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