Aa
Adopted infant from HCV mom
Heys Guys,
It has been a while since my last post and I am so glad to see some more of you in SVR.
For those who don't remember I have adopted 2 children from and HCV infected mom. My son has alwasy tested + for antibodies but negative on PCR test.Docs say he is clear since he is now 4. However, his baby sister has been tested for the antibody at 6 months which was positive but docs don't want to give her the PCR unless she still test + for the antibody at 18 months. She is now 15 months and I am so nervous about this test. Please assure me of her chances of getting this. Did anyone's children get this? Please know that I will love her NO less if she is postive I am just worried about her. She was a Heroine baby and has had to fight for survival almost all of her life. Thanks for all of your help. Feel free to use this for other post as well.
All of you are in my prayers daily and will always be.
Thanks
Scared Mommy
It has been a while since my last post and I am so glad to see some more of you in SVR.
For those who don't remember I have adopted 2 children from and HCV infected mom. My son has alwasy tested + for antibodies but negative on PCR test.Docs say he is clear since he is now 4. However, his baby sister has been tested for the antibody at 6 months which was positive but docs don't want to give her the PCR unless she still test + for the antibody at 18 months. She is now 15 months and I am so nervous about this test. Please assure me of her chances of getting this. Did anyone's children get this? Please know that I will love her NO less if she is postive I am just worried about her. She was a Heroine baby and has had to fight for survival almost all of her life. Thanks for all of your help. Feel free to use this for other post as well.
All of you are in my prayers daily and will always be.
Thanks
Scared Mommy
What is your doc's rational for titering down on the interferon?
- easing off to allow the immune system to reach homeostasis over a longer period of time (i.e. - not "shocking" the immune system by allowing it to re-modulate slowly)?
- to hopefully stop and/or reverse histology by extending?
- keeping the interferon in your system since some studies have shown the importance of interferon later on - and over the long haul - of tx? (though this would fly in the face of his keeping you on the riba, since studies show it's major benefit occurs within the first 20 weeks or so).
I'm sorry to say that I've never run into any studies on this subject. The only patient I know who has followed a somewhat similar protocol no longer seems to check in here. He extended the peg interferon alone over the course of a year, titering down 1/4 at a time every three months. His main reason for doing so was because of having cryoglobulinemia, thereby making SVR a much tougher goal (which he did eventually attain).
If I were in your shoes, first thing I'd want is for him to explain fully his reasoning(s) - and also ask where you could look to find out more that would back up that particular line of tx thinking.
The only obvious potential reasons to extend relate to your histology and age. But given that you were clear by week 6 (and possibly earlier - sometimes you can do a relatively good educated guess based upon LFT response in the weeks leading up to the first PCR - assuming they were elevated going into tx), extending for SVR alone becomes a real guessing game of things like: "is the Drusano 36 weeks post-clear model good enough in my case?", or do the "age & stage" duo make a good case for adding on some more time? If so, how much more? ... and on and on. I'm sure you've asked these of yourself and many more. No clear answers - as is the case with so much of tx and Hep C in general.
In my case, I was all ready to extend leading up to my first PCR (week 12) since I was a geno 1, failed prior mono tx and had a somewhat high viral load going in. But when things showed up clear at week 12, I had to rethink. First, I was 45 when starting and was Stage 1/ Grade 1 - things relatively in my favor. Secondly, my LFT's normaliazed within 2 weeks of starting tx, which I theorized to be an RVR - onto an eventual EVR. Add onto that that I had no desire to be on the meds longer than necessary and that as tx went on the sx's became worse and more unbearable - I decided 48-and-out had my name written all over it. In my case, that was enough for an SVR. I find out if it's held at the one year mark about two weeks from now.
If I had to make a decision based upon the information you provide, I'd first question the need to be on full dose riba so late in the game along with the declining amount of interferon. Seems rather counter-intuitive. Mono riba can lower viral levels, but not clear. Since studies show it's main benefit to be early in tx, one line of thought is that it's a "team player" with the interferon, but can only be the "lead dancer" or "co-partner" in viral eradication for so long - then the interferon steps to the forefront the rest of the way through tx, relegating riba to "second-class" status. I think if I had to "titer down" one or the other, I'd keep the interferon at full and dose down the riba. Or dose down on both together. Or if you feel you are able to handle it - and believe that the "age and stage" duo lower your odds that greatly, keep on doing both at full dose as long as you can. Again no clear answers. Just more confusion. Here, play with the <a href="http://www.natap.org/2004/EASL/easl_17.htm">SVR Calculator</a> for a while. It's a good way to kill some time and it sure drove me mad playing out scenarios to try and fit my situation.
May God's blessings and mercy be upon you.
TnHepGuy
- easing off to allow the immune system to reach homeostasis over a longer period of time (i.e. - not "shocking" the immune system by allowing it to re-modulate slowly)?
- to hopefully stop and/or reverse histology by extending?
- keeping the interferon in your system since some studies have shown the importance of interferon later on - and over the long haul - of tx? (though this would fly in the face of his keeping you on the riba, since studies show it's major benefit occurs within the first 20 weeks or so).
I'm sorry to say that I've never run into any studies on this subject. The only patient I know who has followed a somewhat similar protocol no longer seems to check in here. He extended the peg interferon alone over the course of a year, titering down 1/4 at a time every three months. His main reason for doing so was because of having cryoglobulinemia, thereby making SVR a much tougher goal (which he did eventually attain).
If I were in your shoes, first thing I'd want is for him to explain fully his reasoning(s) - and also ask where you could look to find out more that would back up that particular line of tx thinking.
The only obvious potential reasons to extend relate to your histology and age. But given that you were clear by week 6 (and possibly earlier - sometimes you can do a relatively good educated guess based upon LFT response in the weeks leading up to the first PCR - assuming they were elevated going into tx), extending for SVR alone becomes a real guessing game of things like: "is the Drusano 36 weeks post-clear model good enough in my case?", or do the "age & stage" duo make a good case for adding on some more time? If so, how much more? ... and on and on. I'm sure you've asked these of yourself and many more. No clear answers - as is the case with so much of tx and Hep C in general.
In my case, I was all ready to extend leading up to my first PCR (week 12) since I was a geno 1, failed prior mono tx and had a somewhat high viral load going in. But when things showed up clear at week 12, I had to rethink. First, I was 45 when starting and was Stage 1/ Grade 1 - things relatively in my favor. Secondly, my LFT's normaliazed within 2 weeks of starting tx, which I theorized to be an RVR - onto an eventual EVR. Add onto that that I had no desire to be on the meds longer than necessary and that as tx went on the sx's became worse and more unbearable - I decided 48-and-out had my name written all over it. In my case, that was enough for an SVR. I find out if it's held at the one year mark about two weeks from now.
If I had to make a decision based upon the information you provide, I'd first question the need to be on full dose riba so late in the game along with the declining amount of interferon. Seems rather counter-intuitive. Mono riba can lower viral levels, but not clear. Since studies show it's main benefit to be early in tx, one line of thought is that it's a "team player" with the interferon, but can only be the "lead dancer" or "co-partner" in viral eradication for so long - then the interferon steps to the forefront the rest of the way through tx, relegating riba to "second-class" status. I think if I had to "titer down" one or the other, I'd keep the interferon at full and dose down the riba. Or dose down on both together. Or if you feel you are able to handle it - and believe that the "age and stage" duo lower your odds that greatly, keep on doing both at full dose as long as you can. Again no clear answers. Just more confusion. Here, play with the <a href="http://www.natap.org/2004/EASL/easl_17.htm">SVR Calculator</a> for a while. It's a good way to kill some time and it sure drove me mad playing out scenarios to try and fit my situation.
May God's blessings and mercy be upon you.
TnHepGuy
<u>can-do-man</u> - thanks for posting the link.
I'm very sorry to see Boger on there saying that VX-950 can "<i>...eradicate the virus in patients in 3 months. So in that sense it is a <u>cure</u>"</i>.
Given that the trials Vertex has done have lasted a meer two weeks - with none of the subjects achieving SVR - he gives out nothing but false hope and misleading information when making statements such as the above. And even if and when VX-950 patients do reach SVR, complete eradication (i.e. - <u>cure</u>) will have to be measured over time as it is now in spontaneous clearers and current SVR patients - against the presence of occult virus.
Making unsubstantiated leaps and assumptions like this before having any of the final data/answers does no benefit to any Hep C patients - just to the spin and hype that surrounds the drug and company.
TnHepGuy
I'm very sorry to see Boger on there saying that VX-950 can "<i>...eradicate the virus in patients in 3 months. So in that sense it is a <u>cure</u>"</i>.
Given that the trials Vertex has done have lasted a meer two weeks - with none of the subjects achieving SVR - he gives out nothing but false hope and misleading information when making statements such as the above. And even if and when VX-950 patients do reach SVR, complete eradication (i.e. - <u>cure</u>) will have to be measured over time as it is now in spontaneous clearers and current SVR patients - against the presence of occult virus.
Making unsubstantiated leaps and assumptions like this before having any of the final data/answers does no benefit to any Hep C patients - just to the spin and hype that surrounds the drug and company.
TnHepGuy
You've done a wonderful thing for yourself and these children.
One of the posters here, Snookmeister, was infected at birth. Perhaps if he comes along he can share some of his insight.
One of the posters here, Snookmeister, was infected at birth. Perhaps if he comes along he can share some of his insight.
I will be praying for you and your little girl. The world needs more people like you, you are a wonderful person not many people would take on a child with HepC and not being their own. My hat is off to you!!
Remember you can always come here for support and I hope you do.
ps--- I've heard that a child durning their first year of life has anti- bodies that fight off illness. So maybe you'll hear good news about the test.
BB
Remember you can always come here for support and I hope you do.
ps--- I've heard that a child durning their first year of life has anti- bodies that fight off illness. So maybe you'll hear good news about the test.
BB
Last riba was 25 days ago. Cobwebs are coming off and have more energy to get back to the things I used to do to stay busy. 3 weeks post-TX vacation didn't hurt after and it was an interesting year of work. Appetite is returning, gaining a few ozs and, I think, the return of some mental acuity. Although, seem to still have a touch of the rage. Lack of complete emotional control is unnerving - shed a tear at Memories of A Geisha. Getting it back, not pushing it too hard, trying to do healthy things, trying to get some tone on these old bones. On 'the other side' but quest continues.
It has been a while! is it already 15 months? I know you are going to be a nervous wreck for the next 4 months, and it is only normal. It is going to be a LONG wait, but what can you do? You could buy one of those kits for home HCV testing and do it yourself earlier or ask the dr to do it earlier. 18 months seems like a random number chosen by the drs. I bet she is negative at 15 months.
If it is going to make you anxious to wait, take the chance now.
in any event, the best to you and your children.
If it is going to make you anxious to wait, take the chance now.
in any event, the best to you and your children.
I am so sorry for you my heart is breaking. I do know there are some women in here who's children HAVE gotten it however I can tell you that my children DID NOT. I'Ve had this 25 years and they are 15 and 17. I'm glad I didn't know I had it when I gave birth! I only found out last August.
My daughters boyfriend was born a heroin baby as well to an HCV infected mother and HE is ok. She now has HIV and he was tested for that as well and is clear thank GOD. He was adopted away from her by his grandmother when he was three thank GOD.
So there are a few cases of NEGATIVE that hopefully will keep you upbeat!
And remember no matter what...we are here to share the burden with you and support you and be here no matter what.
I will be praying for you,
Debby
My daughters boyfriend was born a heroin baby as well to an HCV infected mother and HE is ok. She now has HIV and he was tested for that as well and is clear thank GOD. He was adopted away from her by his grandmother when he was three thank GOD.
So there are a few cases of NEGATIVE that hopefully will keep you upbeat!
And remember no matter what...we are here to share the burden with you and support you and be here no matter what.
I will be praying for you,
Debby
I hear you on those mentals. A "good" commercial can really choke me up these days. Quite embarassing if anyone's around. LOL. Riba has a long half life and you've only been off for a month. Hopefully, you'll soon return to your less sensitive pre-tx harder-assed macho persona. LOL. I sure hope I do.
-- Jim
-- Jim
Oh Yeah. My waist size goes up as my overall weight drops. Like hiding a spent gooey Kleenex under the pillows, this is a definite 'repositioned tissue-issue'.
I had a sweet friend explain the riba emotions while on TX this way....
You're standing in the grocery store with an apple in each hand and you're crying cause one's bigger than the other.
I didn't totally understand till I started TX. I sure know what you mean about those commercials.
Commercials and apples. they'll get you everytime.
You're standing in the grocery store with an apple in each hand and you're crying cause one's bigger than the other.
I didn't totally understand till I started TX. I sure know what you mean about those commercials.
Commercials and apples. they'll get you everytime.
I was thinking that part of it is water weight loss from the dehydration we have...although we are drinking tons of water and fluids we really only "rent" them.
I mean I wake up a couple times a night from drinking all day but still I am as dry as can be.
Since all my clothes look like they belong to somebody else now and I have to pin everything to make it smaller though...it's not ONLY water weight I suppose. ;-)
I mean I wake up a couple times a night from drinking all day but still I am as dry as can be.
Since all my clothes look like they belong to somebody else now and I have to pin everything to make it smaller though...it's not ONLY water weight I suppose. ;-)
Thanks for your heart felt words. I can always count on this group to lift me up. I really don't have anyone else to talk to since the only ones that understand are the ones who are directly effected by this disease. I either have friends I can't tell because they are phobia type people or I have friends that make light of it as if she may have the common cold. It is hard to find people that understand this enough to answer me honestly but un-ashamed. Thanks again
Not as Scared Mommy
Not as Scared Mommy
I am having severe pc problems. I have been on the line with Earthlink & they tell me it's fixed? I responded to your comments regarding dental work & sun, leaving you my personal e-mail, hoping it would work and I just read a comment from Cuteus saying that these answers are deleted? Let me know if you receive this and I will start all over again!
Sorry you're having computer problems, I know first hand how frustrating that can be.
Yes, Med Help tends discourages people from posting their email address and often deletes the email address or the entire thread. It's probably a liability issue. In any event, I appreciate your efforts and when your Earthlink connection is back working I welcome your thoughts in whatever thread may be open.
I've pretty much made up my mind to have my teeth cleaned later this week as the antibiotics I'm on are apparently broad spectrum enough to protect me from any risk of infection from bacterial seeding. Not much sun going on these days so I've got time to decide how much I'll take in as the weather changes.
Now if you know a good moth exterminator. LOL.
Hope this finds you well.
-- Jim
Yes, Med Help tends discourages people from posting their email address and often deletes the email address or the entire thread. It's probably a liability issue. In any event, I appreciate your efforts and when your Earthlink connection is back working I welcome your thoughts in whatever thread may be open.
I've pretty much made up my mind to have my teeth cleaned later this week as the antibiotics I'm on are apparently broad spectrum enough to protect me from any risk of infection from bacterial seeding. Not much sun going on these days so I've got time to decide how much I'll take in as the weather changes.
Now if you know a good moth exterminator. LOL.
Hope this finds you well.
-- Jim
I have 5 children and none of them are HCV positive ,i didnt find out i had hepc till after my 5 th was born so that ment my viral load was already high with my last 2 one is 8 and one is 5 I thank God everyday that they were spared..
Let me know if this is the paper you are thinking of:
<a href="http://www.natap.org/2005/HCV/102105_02.htm">Chronic Hepatitis C in Childhood: An 18-Year Experience</a>
TnHepGuy
<a href="http://www.natap.org/2005/HCV/102105_02.htm">Chronic Hepatitis C in Childhood: An 18-Year Experience</a>
TnHepGuy
I am so very sorry. I will say a prayer for your little girl. As Kalio said, she has a wonderful mom and that means everything. Try not too worry too much until she is old enough to be tested. She may very well clear like your little boy. Know we are all here for you.
TnHepGuy prev: "I'm very sorry to see Boger on there saying that VX-950 can "...eradicate the virus in patients in 3 months. So in that sense it is a cure".
--------------------
I just finished watching the video and I had a different take on what Bolex said. I suggest others following Vertex go to CanDo's link http://tinyurl.com/durfu, watch the video and draw their own conclusions on what is being promised or not.
From what I heard, Bolex simply said (in paraphrase) that based on their preliminary results they will now extend the studies to a three-month period which they believe will be necessary to eradicate the virus. It was clear to me that no promises of a cure were being made based on current data, and that Bolex was simply laying out the next step in the process.
I understand that there's a lot of controversy/emotion going on here and elsewhere with the Vertex "promise" but from what I've seen so far Vertex has been very upfront with what they're doing and what they plan to do.
Sure, Vertex is a publically traded company and they're putting the best face forward, but that's quite normal and to be expected. Hopefully CTON will chime in because he's been following the Vertex trials a lot closer than I have.
-- Jim
--------------------
I just finished watching the video and I had a different take on what Bolex said. I suggest others following Vertex go to CanDo's link http://tinyurl.com/durfu, watch the video and draw their own conclusions on what is being promised or not.
From what I heard, Bolex simply said (in paraphrase) that based on their preliminary results they will now extend the studies to a three-month period which they believe will be necessary to eradicate the virus. It was clear to me that no promises of a cure were being made based on current data, and that Bolex was simply laying out the next step in the process.
I understand that there's a lot of controversy/emotion going on here and elsewhere with the Vertex "promise" but from what I've seen so far Vertex has been very upfront with what they're doing and what they plan to do.
Sure, Vertex is a publically traded company and they're putting the best face forward, but that's quite normal and to be expected. Hopefully CTON will chime in because he's been following the Vertex trials a lot closer than I have.
-- Jim
I remember you posting awhile back, and your concern for your children then.. I can understand your concern, but HCV is not a death sentence. There is NO reason whatsoever, that your daughter can not, and will not live a joyous life!!
I was infected at birth with HCV from my mother. I was a natural home birth, actually right in the tub with only my father and a mid wife present.
I did not find out about HCV till a routine Doctor visit in like 95'. Believe me, nothing stopped me from being an everyday, troublesome teenager. I went on for 9 more years, till 2004 before giving HCv even the slighest thought. In 2004, I was tested again, and went through all the motions, as I was recently married and my wife insisted. Biopsy revealed moderate fibrosis, a borderline 3 to be exact, and the hardest to treat genotype 1a.. I went on to endure 48 weeks of tx, and currently at 3 months post, I'm undetectable. I'm 28 years old, and plan on living long enough to experience prostate cancer, heart disease, erectial dysfuntion, etc!! LOL
HCV has NEVER slowed me down. I lived my life like any other kid, and a lot better than most. Sure if I knew at birth I was infected, I would have lived slightly different, but I can say that I've pretty much done it ALL!! it is thought by most of the medical community that children progress slower than adults, and actually have better SVR percentages with current tx. There was study a while back about children and the current tx combo, that was quite promising. Children seemed to experience significantly less sx's, and higher SVR rates compared to "weathered" patients, so to speak..
But your daughter is coming into the world with new more efficient and powerful meds, if infact she is even infected.
As you know, the chances of becoming infected at birth with HCV, is VERY slim.. At the most, I can comfortably say around 5%, if not less.
HCV is NOT a death sentence..
I was infected at birth with HCV from my mother. I was a natural home birth, actually right in the tub with only my father and a mid wife present.
I did not find out about HCV till a routine Doctor visit in like 95'. Believe me, nothing stopped me from being an everyday, troublesome teenager. I went on for 9 more years, till 2004 before giving HCv even the slighest thought. In 2004, I was tested again, and went through all the motions, as I was recently married and my wife insisted. Biopsy revealed moderate fibrosis, a borderline 3 to be exact, and the hardest to treat genotype 1a.. I went on to endure 48 weeks of tx, and currently at 3 months post, I'm undetectable. I'm 28 years old, and plan on living long enough to experience prostate cancer, heart disease, erectial dysfuntion, etc!! LOL
HCV has NEVER slowed me down. I lived my life like any other kid, and a lot better than most. Sure if I knew at birth I was infected, I would have lived slightly different, but I can say that I've pretty much done it ALL!! it is thought by most of the medical community that children progress slower than adults, and actually have better SVR percentages with current tx. There was study a while back about children and the current tx combo, that was quite promising. Children seemed to experience significantly less sx's, and higher SVR rates compared to "weathered" patients, so to speak..
But your daughter is coming into the world with new more efficient and powerful meds, if infact she is even infected.
As you know, the chances of becoming infected at birth with HCV, is VERY slim.. At the most, I can comfortably say around 5%, if not less.
HCV is NOT a death sentence..
8 0r so patients over a two week period and extreme celebration over a fast track designation....
My personal opinion is that ANY potentially useful drug drug for HCV could be granted fast track status, as they would fullfill the main requirment of addressing a medical need. The main advantage is that "fast track" drug would most likely receive priority review status and, presumably, get to market quicker. Having said that, priority review can be granted to drugs for which "fast track' status had never been applied for by the Sponsor. It's really little more than a fancy label to let investors know that the FDA considers the drug (and its intended indication) POTNTIALLY important. There's really very little other benefit to the Sponsor in terms of interaction with the FDA nowadays.
Also in the pipeline Valopicitabine (NM283) which has some data on non responders. There is an added advantage to this med as Novartis owns a signigigant piece of this company. Novartis also owns Chiron who holds the patent to HCV.
Randomized Trial of Valopicitabine (NM283)
In treatment-na
My personal opinion is that ANY potentially useful drug drug for HCV could be granted fast track status, as they would fullfill the main requirment of addressing a medical need. The main advantage is that "fast track" drug would most likely receive priority review status and, presumably, get to market quicker. Having said that, priority review can be granted to drugs for which "fast track' status had never been applied for by the Sponsor. It's really little more than a fancy label to let investors know that the FDA considers the drug (and its intended indication) POTNTIALLY important. There's really very little other benefit to the Sponsor in terms of interaction with the FDA nowadays.
Also in the pipeline Valopicitabine (NM283) which has some data on non responders. There is an added advantage to this med as Novartis owns a signigigant piece of this company. Novartis also owns Chiron who holds the patent to HCV.
Randomized Trial of Valopicitabine (NM283)
In treatment-na
THG said prev: And even if and when VX-950 patients do reach SVR, complete eradication (i.e. - cure) will have to be measured over time as it is now in spontaneous clearers and current SVR patients - against the presence of occult virus."
----------------------------------------------
Maybe I'm reading you wrong, but I would think that if Vertex can effect a similar SVR/cure to combo treatment (non-detect virus six months post tx) in less time, with less sides and a higher success rate -- then it's a major leap forward regardless of the occult virus issue. An issue, which if it proves to be significant in the future, also exists in combo treatment as well.
Of course we're all hoping for the magic of all magic bullets that will make our livers born again virgins :) but in the meanwhile anything that that can get us to SVR quicker, safer and with less pain than combo treatment would be a blessing.
BTW I appreciate all the time, effort and intelligence you bring to the discussion group with the many studies you post.
-- Jim
----------------------------------------------
Maybe I'm reading you wrong, but I would think that if Vertex can effect a similar SVR/cure to combo treatment (non-detect virus six months post tx) in less time, with less sides and a higher success rate -- then it's a major leap forward regardless of the occult virus issue. An issue, which if it proves to be significant in the future, also exists in combo treatment as well.
Of course we're all hoping for the magic of all magic bullets that will make our livers born again virgins :) but in the meanwhile anything that that can get us to SVR quicker, safer and with less pain than combo treatment would be a blessing.
BTW I appreciate all the time, effort and intelligence you bring to the discussion group with the many studies you post.
-- Jim
hi there,
I have three children and none of them have been infected, thank god, but I seem to remember being told that all babies inherit their mothers HCV antibodies, so I think that it is expected for them to have the antibodies initially, which all but a very small percent lose by the time they are 18 months. I have all my fingers and toes crossed for you and your family, odds are that all will be fine.
love and luck
x
I have three children and none of them have been infected, thank god, but I seem to remember being told that all babies inherit their mothers HCV antibodies, so I think that it is expected for them to have the antibodies initially, which all but a very small percent lose by the time they are 18 months. I have all my fingers and toes crossed for you and your family, odds are that all will be fine.
love and luck
x
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