Guest guest Posted September 17, 2008 Report Share Posted September 17, 2008 Hi - You may want to have an immunologist do perforin studies? And there is currently some kind of research - at least at Children's or UAB here in AL on some genetics associated with NKs. I wonder if there is a relationship to another child I know of who they found some things they'd never seen before. If you'd tell me more about your son's medical history, and there seems to be any correlation, perhaps I could forward some info to a doc here - or the child's mom - and see if they're interested in looking into it or if the test is being done at more centers & if so, where? You're seeing Dr G, right? Has your child ever regressed and lost motor skills? Till later, Re: HHV6 Anyone have any info on HHV 6 rising? This is the highest I have seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first for us. Thanks for any info. We are also on Immunovir. Thanks again Sincerely Noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2008 Report Share Posted September 17, 2008 What kind of porphyrin tests? my son regressed after the MMR, he showed IgM antibodies to it 2 years post vaccination. We did IVIG with Dr. Gupta for 8 mons. then he got really sick after the infusions. He tolerated it okay til that 8 month. This was for the hypogammaglobulinemia. Now his labs consistently show lymphocytes rising, Dr. G says this is telling him there is a viral issue going on. We stay on an antibiotics for long periods of time. WBC are in Normal range, CMV , EBV, HHV 6 fluctuate. Rubeola 5.0, I see Dr. G tomorrow hopefully he has a plan. I have never tested testosterone, have you? This has been on my mind for some reason. My son is 4 yrs. old soon, 44 inches tall, about 42 lbs. What about interferon, do you know anything about that.? He also has sinusitis. Neutrophils are always low. Also mycoplasma pneumonia 463 H , I know this is not in any order, but this is kinda our profile. Thanks for your help. Please let me know about the research. Sincerely Noel From: <thecolemans4> Subject: Re: Re: HHV6 groups (DOT) com Date: Tuesday, September 16, 2008, 6:25 PM Our experience was that my son's HHV6 titers were always 1:10, but Dr G said he was a classic case of HHV6 'hiding'. It was when his titers went up to 1:300 or 1:600 (can't remember) and it coincided w/a wonderful change in the way his eyes moved (they 'led' his head for the first time) that we knew we had hit the virus. So a rising titer isnt' always a bad thing alone. Other combinations of markers come into play to determine if there is a problem. Odds are, you'll be on Famvir next. That was the best one for the boys. I'm so curious about the immunovir. Have you seen much? Did you start it early? Were NKs low and that's why he's on it? Are you paying a fortune for it? Thanks, Re: HHV6 Anyone have any info on HHV 6 rising? This is the highest I have seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first for us. Thanks for any info. We are also on Immunovir. Thanks again Sincerely Noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Noel, a porphyrins test is not the same thing as a perforin. Porphyrins is for heavy metals and used in other protocols not . Perforin is a protein found in T & NK cells. Cheryl On Sep 17, 2008, at 5:32 PM, NOEL SCHNEIDER wrote: > What kind of porphyrin tests? my son regressed after the MMR, he > showed IgM antibodies to it 2 years post vaccination. We did IVIG > with Dr. Gupta for 8 mons. then he got really sick after the > infusions. He tolerated it okay til that 8 month. This was for the > hypogammaglobulinemia. Now his labs consistently show lymphocytes > rising, Dr. G says this is telling him there is a viral issue going > on. We stay on an antibiotics for long periods of time. WBC are in > Normal range, CMV , EBV, HHV 6 fluctuate. Rubeola 5.0, I see Dr. G > tomorrow hopefully he has a plan. I have never tested testosterone, > have you? This has been on my mind for some reason. My son is 4 > yrs. old soon, 44 inches tall, about 42 lbs. What about > interferon, do you know anything about that.? He also has > sinusitis. Neutrophils are always low. Also mycoplasma pneumonia > 463 H , I know this is not in any order, but this is kinda our > profile. Thanks for your help. Please let me know about > the research. > > > Sincerely Noel > > > > From: <thecolemans4> > Subject: Re: Re: HHV6 > groups (DOT) com > Date: Tuesday, September 16, 2008, 6:25 PM > > Our experience was that my son's HHV6 titers were always 1:10, but > Dr G said he was a classic case of HHV6 'hiding'. It was when his > titers went up to 1:300 or 1:600 (can't remember) and it coincided > w/a wonderful change in the way his eyes moved (they 'led' his head > for the first time) that we knew we had hit the virus. So a rising > titer isnt' always a bad thing alone. Other combinations of > markers come into play to determine if there is a problem. Odds > are, you'll be on Famvir next. That was the best one for the boys. > > I'm so curious about the immunovir. Have you seen much? Did you > start it early? Were NKs low and that's why he's on it? Are you > paying a fortune for it? > > Thanks, > > > Re: HHV6 > > Anyone have any info on HHV 6 rising? This is the highest I have > seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, > and vice versa. We are on Valtrex now, Guess I am trying to figure > out Dr. G's next move. This is a first for us. Thanks for any info. > We are also on Immunovir. Thanks again > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Okay, I was curious, how do I run those, through an immunologist? Or through research only? Dr. G started us on Famvir instead of valtrex now, we switched, he wants to do Gammaglobulin IM injections, I don't want to do that just yet. any info regarding that. Thanks once again. Sincerely Noel > > From: <thecolemans4> > Subject: Re: Re: HHV6 > groups (DOT) com > Date: Tuesday, September 16, 2008, 6:25 PM > > Our experience was that my son's HHV6 titers were always 1:10, but > Dr G said he was a classic case of HHV6 'hiding'. It was when his > titers went up to 1:300 or 1:600 (can't remember) and it coincided > w/a wonderful change in the way his eyes moved (they 'led' his head > for the first time) that we knew we had hit the virus. So a rising > titer isnt' always a bad thing alone. Other combinations of > markers come into play to determine if there is a problem. Odds > are, you'll be on Famvir next. That was the best one for the boys. > > I'm so curious about the immunovir. Have you seen much? Did you > start it early? Were NKs low and that's why he's on it? Are you > paying a fortune for it? > > Thanks, > > > Re: HHV6 > > Anyone have any info on HHV 6 rising? This is the highest I have > seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, > and vice versa. We are on Valtrex now, Guess I am trying to figure > out Dr. G's next move. This is a first for us. Thanks for any info. > We are also on Immunovir. Thanks again > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 The only thing I can tell you is that they didn't seem to make any difference in my son. His IgM was low and didn't really change much with IMIG. Neither did his titers or anything else. I asked Dr. G once if we should continue and he felt we should. So we did. They are not comfortable, though. He doesn't like IVIG but I asked him anyway at what point we needed to consider something else (including IVIG) and he told me that his next move would be to add immunovir. So I don't know. I think we did it for almost a year, we only recently stopped. I do know that several parents on this list will definitely be able to give you more positive experiences. Ours just wasn't much. cheryl On Sep 18, 2008, at 8:13 PM, NOEL SCHNEIDER wrote: > Okay, I was curious, how do I run those, through an immunologist? > Or through research only? Dr. G started us on Famvir instead of > valtrex now, we switched, he wants to do Gammaglobulin IM > injections, I don't want to do that just yet. any info regarding > that. Thanks once again. > > > Sincerely Noel > > >> >> From: <thecolemans4> >> Subject: Re: Re: HHV6 >> groups (DOT) com >> Date: Tuesday, September 16, 2008, 6:25 PM >> >> Our experience was that my son's HHV6 titers were always 1:10, but >> Dr G said he was a classic case of HHV6 'hiding'. It was when his >> titers went up to 1:300 or 1:600 (can't remember) and it coincided >> w/a wonderful change in the way his eyes moved (they 'led' his head >> for the first time) that we knew we had hit the virus. So a rising >> titer isnt' always a bad thing alone. Other combinations of >> markers come into play to determine if there is a problem. Odds >> are, you'll be on Famvir next. That was the best one for the boys. >> >> I'm so curious about the immunovir. Have you seen much? Did you >> start it early? Were NKs low and that's why he's on it? Are you >> paying a fortune for it? >> >> Thanks, >> >> >> Re: HHV6 >> >> Anyone have any info on HHV 6 rising? This is the highest I have >> seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, >> and vice versa. We are on Valtrex now, Guess I am trying to figure >> out Dr. G's next move. This is a first for us. Thanks for any info. >> We are also on Immunovir. Thanks again >> >> Sincerely Noel >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Hey Noel - I regret not jumping on the IMGG w/my youngest son when we had the chance and when Dr G wanted to give it a shot. I had gotten resistance from my local pediatrician, and the next set of labs were better, and we just never got around to it. He regressed after having to stop the protocol, and if the offer comes around again, we will absolutely do it immediately. Aside from the unpleasantness of the injection, it is otherwise worth trying - good immunomodulation opportunities there. Dr G doesn't give them to all kids - my oldest wasn't offered. It's in the labs... HTH w/a 'painful' decision. Most kids adapt to them pretty well. I know of one child - cannot remember whose (jump in mom?) who started requesting his shots (probably his kutapressin instead of IMGG) because he could tell how much better he felt. I know IMGG hurts more than the kutapressin did but the experienced moms can give good advise to make it a lot easier and the kids usually adapt readily. Re: HHV6 > > Anyone have any info on HHV 6 rising? This is the highest I have > seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, > and vice versa. We are on Valtrex now, Guess I am trying to figure > out Dr. G's next move. This is a first for us. Thanks for any info. > We are also on Immunovir. Thanks again > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Thank you for responding once again , I really appreciate the input. I will definately give it some thought. His total IgG is low 440. Sincerely Noel > > From: <thecolemans4> > Subject: Re: Re: HHV6 > groups (DOT) com > Date: Tuesday, September 16, 2008, 6:25 PM > > Our experience was that my son's HHV6 titers were always 1:10, but > Dr G said he was a classic case of HHV6 'hiding'. It was when his > titers went up to 1:300 or 1:600 (can't remember) and it coincided > w/a wonderful change in the way his eyes moved (they 'led' his head > for the first time) that we knew we had hit the virus. So a rising > titer isnt' always a bad thing alone. Other combinations of > markers come into play to determine if there is a problem. Odds > are, you'll be on Famvir next. That was the best one for the boys. > > I'm so curious about the immunovir. Have you seen much? Did you > start it early? Were NKs low and that's why he's on it? Are you > paying a fortune for it? > > Thanks, > > > Re: HHV6 > > Anyone have any info on HHV 6 rising? This is the highest I have > seen so far at 1:320 labcorp. When EBV is elevated, HHV6 is not, > and vice versa. We are on Valtrex now, Guess I am trying to figure > out Dr. G's next move. This is a first for us. Thanks for any info. > We are also on Immunovir. Thanks again > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 We give my son his shot at night while he is sleeping and, for the most part, he doesn't even notice it. Kristy From: [mailto: ] On Behalf Of Sent: Friday, September 19, 2008 6:57 PM Subject: Re: Re: HHV6/ No NKs Hey Noel - I regret not jumping on the IMGG w/my youngest son when we had the chance and when Dr G wanted to give it a shot. I had gotten resistance from my local pediatrician, and the next set of labs were better, and we just never got around to it. He regressed after having to stop the protocol, and if the offer comes around again, we will absolutely do it immediately. Aside from the unpleasantness of the injection, it is otherwise worth trying - good immunomodulation opportunities there. Dr G doesn't give them to all kids - my oldest wasn't offered. It's in the labs... HTH w/a 'painful' decision. Most kids adapt to them pretty well. I know of one child - cannot remember whose (jump in mom?) who started requesting his shots (probably his kutapressin instead of IMGG) because he could tell how much better he felt. I know IMGG hurts more than the kutapressin did but the experienced moms can give good advise to make it a lot easier and the kids usually adapt readily. Quote Link to comment Share on other sites More sharing options...
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