Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Hi - I'm curious about Valtrex bringing a return of seizures. I'm wondering if - in the process of targeting some viruses - if the Valtrex " flushed out " a virus in the CNS, rather than the medication itself causing the seizure? Because Valtrex has also helped diminish seizures that were intractable in some kids. At least I think it was Valtrex. Would it be worthwhile to attempt a different antiviral - say Famvir? Also, Dr G has used (lately) another antiviral late in the protocol for kids who did not respond to the other two (over a 2-3 year period) as desired - can't remember which one - Zovirax maybe? - but it has to be given 5 times a day in order to be effective. Anyway - I'm just wondering if the med itself was the cause, or a " flushing out " of the virus - particularly HHV6. That virus likes the temporal lobe ... were they temporal lobe seizures? Were viral titers being monitored at the time? Was there an increase? Can you have an HHV6 titer run (even though it is highly inaccurate sometimes)? Seizures can be directly connected to viruses according to Dr Goldberg. I really don't know what to tell you - I know others have had the problem and I hope they answer back to you because I don't know what happened for them. The other meds are antifungal cycling - Diflucan for 9months to a year, Nystatin for 6 months. He does not stop and start antifungals - they are given long-term at a higher therapeutic dose (5mg/per kg of bodyweight for Diflucan - typically a bit higher than the usual 3mg/kg dose given for 10 day cycles) without a break in order to decrease the significant risk of resistance. This is not the typical mainstream pattern in giving antifungals because of the fear of liver damage - but because they are started slower instead of double dose then tapering back) there is actually less risk to the liver the way he does it, as well as much less risk of resistance ... a big concern since those are about the only really effective while safe antifungals we can utilize for any long term period. There is a research study published on neonatals showing that 5mg/kg was more effective than 3mg/kg (and safer) in premature babies who were at high risk of developing potentially fatal fungal infections... if their tiny bodies can handle that high of a dose, I feel assured for my kids too. That high dose didn't increase their risk of dying ... it reduced it. I took this to my pediatrician once because he was giving me a very hard time about the antifungals. (But he had had a child require a liver transplant that it was thought caused by Diflucan.) That's about it - very low allergy high protein low carb (Zone like) diet... allergy meds for sinuses, SSRI, Tenex when needed, antibiotics if chronic infections like strep or sinus, immunoglobulins after a year on meds if immunoglobulin problems (less than 25% of his patients) ... but especially antivirals and antifungals for the immune support. HTH- --- lil1cutie101 <gmontg@...> wrote: > Hello all: > I was wondering if you could tell me since Dr. G > doesn't much of the > natural approach what protocol does he follow for > viruses and repairing > the immune system. I see that he does some diet > intervention, SSRIs and > a spec scan but I wanted to start researching some > of the other > approaches he takes. My son is already on diet > intervention and has > done Valtrex just recently but was stopped when it > brought on seizures > after being seizure-free for almost three years. We > also use some > naturals to help with deficiencies and behaviors but > we haven't got too > far in the last year. If you could let me know what > things Dr. G has > used to help you child so I can start researching. > TIA! > > ville, Florida > > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 I would wonder the same thing. I would wonder if the Valtrex was actually working and you have high virus activity in the brain causing the seizures. Let us know if you see Dr. G and what he says about it. You could also talk to him at the monthly chats. He's usually there every 1st Tuesday of the month and if he can't make it, the office is pretty good about letting us know on the list. cheryl On Mar 11, 2008, at 2:05 PM, wrote: > Hi - > I'm curious about Valtrex bringing a return of > seizures. I'm wondering if - in the process of > targeting some viruses - if the Valtrex " flushed out " > a virus in the CNS, rather than the medication itself > causing the seizure? Because Valtrex has also helped > diminish seizures that were intractable in some kids. > At least I think it was Valtrex. > > Would it be worthwhile to attempt a different > antiviral - say Famvir? Also, Dr G has used (lately) > another antiviral late in the protocol for kids who > did not respond to the other two (over a 2-3 year > period) as desired - can't remember which one - > Zovirax maybe? - but it has to be given 5 times a day > in order to be effective. > > Anyway - I'm just wondering if the med itself was the > cause, or a " flushing out " of the virus - particularly > HHV6. That virus likes the temporal lobe ... were > they temporal lobe seizures? Were viral titers being > monitored at the time? Was there an increase? Can > you have an HHV6 titer run (even though it is highly > inaccurate sometimes)? > > Seizures can be directly connected to viruses > according to Dr Goldberg. I really don't know what to > tell you - I know others have had the problem and I > hope they answer back to you because I don't know what > happened for them. > > The other meds are antifungal cycling - Diflucan for > 9months to a year, Nystatin for 6 months. He does not > stop and start antifungals - they are given long-term > at a higher therapeutic dose (5mg/per kg of bodyweight > for Diflucan - typically a bit higher than the usual > 3mg/kg dose given for 10 day cycles) without a break > in order to decrease the significant risk of > resistance. This is not the typical mainstream > pattern in giving antifungals because of the fear of > liver damage - but because they are started slower > instead of double dose then tapering back) there is > actually less risk to the liver the way he does it, as > well as much less risk of resistance ... a big concern > since those are about the only really effective while > safe antifungals we can utilize for any long term > period. There is a research study published on > neonatals showing that 5mg/kg was more effective than > 3mg/kg (and safer) in premature babies who were at > high risk of developing potentially fatal fungal > infections... if their tiny bodies can handle that > high of a dose, I feel assured for my kids too. That > high dose didn't increase their risk of dying ... it > reduced it. I took this to my pediatrician once > because he was giving me a very hard time about the > antifungals. (But he had had a child require a liver > transplant that it was thought caused by Diflucan.) > > That's about it - very low allergy high protein low > carb (Zone like) diet... allergy meds for sinuses, > SSRI, Tenex when needed, antibiotics if chronic > infections like strep or sinus, immunoglobulins after > a year on meds if immunoglobulin problems (less than > 25% of his patients) ... but especially antivirals and > antifungals for the immune support. > > HTH- > > > --- lil1cutie101 <gmontg@...> wrote: > > > Hello all: > > I was wondering if you could tell me since Dr. G > > doesn't much of the > > natural approach what protocol does he follow for > > viruses and repairing > > the immune system. I see that he does some diet > > intervention, SSRIs and > > a spec scan but I wanted to start researching some > > of the other > > approaches he takes. My son is already on diet > > intervention and has > > done Valtrex just recently but was stopped when it > > brought on seizures > > after being seizure-free for almost three years. We > > also use some > > naturals to help with deficiencies and behaviors but > > we haven't got too > > far in the last year. If you could let me know what > > things Dr. G has > > used to help you child so I can start researching. > > TIA! > > > > ville, Florida > > > > > > > > __________________________________________________________ > Looking for last minute shopping deals? > Find them fast with Search. http://tools.search./ > newsearch/category.php?category=shopping > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Right after my son started on Valtrex, he had a grand mal seizure. The seizure was NOT, NOT due to the Valtrex (it was due to a STUPID, INCOMPETENT chiropractor I should have NEVER trusted with my son - we are sooooooo lucky the MORON did not kill my son), but I do remember reading that one of the side effects of Valtrex is seizures. Kristy Re: Dr. G protocol I would wonder the same thing. I would wonder if the Valtrex was actually working and you have high virus activity in the brain causing the seizures. Let us know if you see Dr. G and what he says about it. You could also talk to him at the monthly chats. He's usually there every 1st Tuesday of the month and if he can't make it, the office is pretty good about letting us know on the list. cheryl On Mar 11, 2008, at 2:05 PM, wrote: > Hi - > I'm curious about Valtrex bringing a return of > seizures. I'm wondering if - in the process of > targeting some viruses - if the Valtrex " flushed out " > a virus in the CNS, rather than the medication itself > causing the seizure? Because Valtrex has also helped > diminish seizures that were intractable in some kids. > At least I think it was Valtrex. > > Would it be worthwhile to attempt a different > antiviral - say Famvir? Also, Dr G has used (lately) > another antiviral late in the protocol for kids who > did not respond to the other two (over a 2-3 year > period) as desired - can't remember which one - > Zovirax maybe? - but it has to be given 5 times a day > in order to be effective. > > Anyway - I'm just wondering if the med itself was the > cause, or a " flushing out " of the virus - particularly > HHV6. That virus likes the temporal lobe ... were > they temporal lobe seizures? Were viral titers being > monitored at the time? Was there an increase? Can > you have an HHV6 titer run (even though it is highly > inaccurate sometimes)? > > Seizures can be directly connected to viruses > according to Dr Goldberg. I really don't know what to > tell you - I know others have had the problem and I > hope they answer back to you because I don't know what > happened for them. > > The other meds are antifungal cycling - Diflucan for > 9months to a year, Nystatin for 6 months. He does not > stop and start antifungals - they are given long-term > at a higher therapeutic dose (5mg/per kg of bodyweight > for Diflucan - typically a bit higher than the usual > 3mg/kg dose given for 10 day cycles) without a break > in order to decrease the significant risk of > resistance. This is not the typical mainstream > pattern in giving antifungals because of the fear of > liver damage - but because they are started slower > instead of double dose then tapering back) there is > actually less risk to the liver the way he does it, as > well as much less risk of resistance ... a big concern > since those are about the only really effective while > safe antifungals we can utilize for any long term > period. There is a research study published on > neonatals showing that 5mg/kg was more effective than > 3mg/kg (and safer) in premature babies who were at > high risk of developing potentially fatal fungal > infections... if their tiny bodies can handle that > high of a dose, I feel assured for my kids too. That > high dose didn't increase their risk of dying ... it > reduced it. I took this to my pediatrician once > because he was giving me a very hard time about the > antifungals. (But he had had a child require a liver > transplant that it was thought caused by Diflucan.) > > That's about it - very low allergy high protein low > carb (Zone like) diet... allergy meds for sinuses, > SSRI, Tenex when needed, antibiotics if chronic > infections like strep or sinus, immunoglobulins after > a year on meds if immunoglobulin problems (less than > 25% of his patients) ... but especially antivirals and > antifungals for the immune support. > > HTH- > > > --- lil1cutie101 <gmontg@...> wrote: > > > Hello all: > > I was wondering if you could tell me since Dr. G > > doesn't much of the > > natural approach what protocol does he follow for > > viruses and repairing > > the immune system. I see that he does some diet > > intervention, SSRIs and > > a spec scan but I wanted to start researching some > > of the other > > approaches he takes. My son is already on diet > > intervention and has > > done Valtrex just recently but was stopped when it > > brought on seizures > > after being seizure-free for almost three years. We > > also use some > > naturals to help with deficiencies and behaviors but > > we haven't got too > > far in the last year. If you could let me know what > > things Dr. G has > > used to help you child so I can start researching. > > TIA! > > > > ville, Florida > > > > > > > > __________________________________________________________ > Looking for last minute shopping deals? > Find them fast with Search. http://tools.search./ > newsearch/category.php?category=shopping > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 This was the theory I came up with as well. I was just sure that the Valtrex stirred up a virus, which in turn caused the seizures. My son is HHV6 positive, not sure if that was the virus that got stirred up and caused the seizures but I know HHV6 is known to cause seizures. No one else thought the Valtrex was a key factor at first not even my mother who is a RN and also has HHV6. My DAN! didn't think it was a cause either and suggested I continue with the Valtrex. He was on Valtrex/ketoconazole for six weeks before the seizures started but he was on a very low dose compared to what I have read other children take. He was only on 500 mg of Valtrex once a day and 100 mg of ketoconazole once a day. I added in biotin, which helped tremendously with the stimming (yeast flare). I would be very curious as to what Dr. G would have to say as well. I guess that is why I am seeking him out. I have such a HUGE fear of seizure return but I sure to what these viruses to stop interfering with my son's daily life. I know since starting antiviral/antifungal therapy I feel better and I'm not quite two weeks into it. I just wonder if there is a better antiviral therapy for children with a history of seizures, especially a strong history like my son's. Thanks for all the input! ville, Florida > > > > > Hello all: > > > I was wondering if you could tell me since Dr. G > > > doesn't much of the > > > natural approach what protocol does he follow for > > > viruses and repairing > > > the immune system. I see that he does some diet > > > intervention, SSRIs and > > > a spec scan but I wanted to start researching some > > > of the other > > > approaches he takes. My son is already on diet > > > intervention and has > > > done Valtrex just recently but was stopped when it > > > brought on seizures > > > after being seizure-free for almost three years. We > > > also use some > > > naturals to help with deficiencies and behaviors but > > > we haven't got too > > > far in the last year. If you could let me know what > > > things Dr. G has > > > used to help you child so I can start researching. > > > TIA! > > > > > > ville, Florida > > > > > > > > > > > > > __________________________________________________________ > > Looking for last minute shopping deals? > > Find them fast with Search. http://tools.search./ > > newsearch/category.php?category=shopping > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 I believe Dr G said before that you MUST be at a higher therapeutic dose - not the lower 'maintenance' doses - for antivirals to be helpful, and lower doses - or starting and stopping too soon - or running out (I got chewed for that once) gives the viruses an opportunity to mutate and develop resistance, which several of the human herpes viruses - especially HHV6 - are known to be capable of doing easily. Also, the low dose can 'flush out' a virus but be insufficient to suppress it. I'd check out Dr G ... he has more than enough kids with seizure disorders - he has plenty of experience in that area, and I believe he has even treated seizures in non- kids. I don't think I would try antivirals again without being under the guidance of someone that takes viruses very seriously and isn't afraid of the proper dose (some DAN! docs seem to underdose and shorten courses believing less is better when it comes to rx meds, and give huge doses of 'safe' supplements). HTH- --- lil1cutie101 <gmontg@...> wrote: > This was the theory I came up with as well. I was > just sure that the > Valtrex stirred up a virus, which in turn caused the > seizures. My son > is HHV6 positive, not sure if that was the virus > that got stirred up > and caused the seizures but I know HHV6 is known to > cause seizures. > No one else thought the Valtrex was a key factor at > first not even my > mother who is a RN and also has HHV6. My DAN! didn't > think it was a > cause either and suggested I continue with the > Valtrex. He was on > Valtrex/ketoconazole for six weeks before the > seizures started but he > was on a very low dose compared to what I have read > other children > take. He was only on 500 mg of Valtrex once a day > and 100 mg of > ketoconazole once a day. I added in biotin, which > helped tremendously > with the stimming (yeast flare). I would be very > curious as to what > Dr. G would have to say as well. I guess that is why > I am seeking him > out. I have such a HUGE fear of seizure return but I > sure to what > these viruses to stop interfering with my son's > daily life. I know > since starting antiviral/antifungal therapy I feel > better and I'm not > quite two weeks into it. I just wonder if there is a > better antiviral > therapy for children with a history of seizures, > especially a strong > history like my son's. > Thanks for all the input! > > ville, Florida > > > > > > > > > > Hello all: > > > > I was wondering if you could tell me since Dr. > G > > > > doesn't much of the > > > > natural approach what protocol does he follow > for > > > > viruses and repairing > > > > the immune system. I see that he does some > diet > > > > intervention, SSRIs and > > > > a spec scan but I wanted to start researching > some > > > > of the other > > > > approaches he takes. My son is already on diet > > > > intervention and has > > > > done Valtrex just recently but was stopped > when it > > > > brought on seizures > > > > after being seizure-free for almost three > years. We > > > > also use some > > > > naturals to help with deficiencies and > behaviors === message truncated === ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 , One of my sons lost all of his speech at age 3 after onset of a ³Lennox Gastaut² type seizure disorder. He ended up in status epilepticus, was having probably 4 types of seizures, went through a 3-day EEG, had to wear a helmet, the whole 9 yards. It was a complete nightmare. Since his brother was already a patient of Dr. G, we immediately looked at his immune system and found problems there. We ended up putting him under Dr. Goldberg¹s care. Dr. Goldberg had us start him on Valtrex and within one week (it was dramatic), his cognitive abilities increased significantly. It was only after that that his speech began to come back. BUT... we felt that the Valtrex might be exacerbating his seizures. We mentioned that to Dr. Goldberg and he immediately switched us to Famvir, which seemed to be a much better fit. At the time, he said the the Valtrex might have been sort of ³kicking up² the virus and not quite controlling it. He has chosen never to revisit Valtrex with that particular child. A few years later he decided to switch both of my sons to Zovirax and they have done very well on that. Dr. G likes Zovirax because he says it¹s the only herpes antiviral that you can dose specifically to a child¹s weight. They do have to take it 5 times a day, though. My son is now 7, has been 2.5 years without seizures (he is also on the anticonvulsant Lamictal) and has regained his speech. At the onset, I was told by his speech therapist that he presented like a stroke victim, so he has come a long, long way. I¹ve always remembered one thing Dr. Goldberg said when things started up with the seizures... he said ³children aren¹t supposed to disintegrate!² and he wondered aloud why the hospital (and this is the finest children¹s hospital in our state) wasn¹t running ³every test in the world² to figure out what was going on with my son. The difference between those Drs. And Dr. Goldberg was that he didn¹t give up on my child. If you have any questions, feel free to ask. Caroline From: lil1cutie101 <gmontg@...> Reply-< > Date: Tue, 11 Mar 2008 18:39:55 +0000 < > Subject: Dr. G protocol Hello all: I was wondering if you could tell me since Dr. G doesn't much of the natural approach what protocol does he follow for viruses and repairing the immune system. I see that he does some diet intervention, SSRIs and a spec scan but I wanted to start researching some of the other approaches he takes. My son is already on diet intervention and has done Valtrex just recently but was stopped when it brought on seizures after being seizure-free for almost three years. We also use some naturals to help with deficiencies and behaviors but we haven't got too far in the last year. If you could let me know what things Dr. G has used to help you child so I can start researching. TIA! ville, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Caroline, Thank you for the reply. It sounds like your son went though a lot like my son did. He has been hospitalized 27 times for seizures. He usually had some time of virus every time he has had onset of seizures. None of the neologists we've seen will admit to that link though. His first seizures came on when he developed RSV at 8 months of age. Over the course of 4.5 years when the seizures where their worst we had been to three of the top hospitals/neurologists in Florida. From ville, to Miami, to Gainesville. I had even spoken to neurologists in Illinois and land. We have been on almost every AED out there and he has had some of the most intense tests ran on him including spinal taps, SPECT scans and video EEG's where they abruptly took him off his AED's just to watch him have seizures. The second time they did a video EEG they couldn't get him to stop having seizures and at one point wanted to do yet another spinal tap on him. Needless to say, I lost it and went completely off on that neurologist. In April of 2005 I had just been diagnosed with liver disease and decided I had to do something to stop these seizures because the neurologists weren't doing anything except use my son as their rat! This was when I put my son on B6/magnesium, and this protocol kept him seizure-free for almost three years. We were one month away from being completely off of AED's when we had a set back in January-six weeks after starting Valtrex. So as you can see from our history, I want to avoid seizures at all costs. But I also know in my heart that my son has seizures because of viruses in his brain. It would be nice to be able to work with a doctor that has experience with seizures, viruses and autism. I'm really surprised and sort of saddened that a regular pediatrician seems to have more knowledge about these areas than a neurologist. Anyway, Dr. G. seems to be the doctor we need to be seeing, but he lives so far away-driving would take days and I'm not sure if flying with my son would be an option-not to mention we have two other children and no family here to help us out. Anyway, again thank you for the reply. ville, Florida Dr. G protocol Hello all: I was wondering if you could tell me since Dr. G doesn't much of the natural approach what protocol does he follow for viruses and repairing the immune system. I see that he does some diet intervention, SSRIs and a spec scan but I wanted to start researching some of the other approaches he takes. My son is already on diet intervention and has done Valtrex just recently but was stopped when it brought on seizures after being seizure-free for almost three years. We also use some naturals to help with deficiencies and behaviors but we haven't got too far in the last year. If you could let me know what things Dr. G has used to help you child so I can start researching. TIA! ville, Florida Quote Link to comment Share on other sites More sharing options...
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