Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 deals with seizures by helping to reduce inflammation in the brain caused by viruses and helping to boost the immune system. Kristy From: [mailto: ] On Behalf Of georgiasand32 Sent: Friday, October 16, 2009 8:07 PM Subject: and Seizures How does deal with seizures? Are anti-seizure meds the norm? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 One of my 2 sons started having seizures at age 3 1/2. He has been a patient of Dr. Goldberg since age 4. He had his last seizure at age 5 (we hope). At present (age 9), he his still on Lamictal for seizure prevention because his EEGs still show ³spikes² indicating that if weaned from anticonvulsant meds, he has high odds of having seizures again. His seizures were very serious... at one point he was diagnosed with Lennox-Gastaut Syndrome. He lost his ability to speak and walk, and had to relearn those skills. I was told that he presented like a stroke victim. He was in status epilepticus initially. Once we started him on antivirals (at about age 4), his abilities made a HUGE jump that first week. He has recovered much of the ground he lost when ill but is still behind his peers in some areas (although ahead in others). Dr. Goldberg is very interested in eventually getting him weaned from the anticonvulsants but agrees with my son¹s neurogeneticist that it is not safe to do so at this time. When my son has his EEGs Dr. Goldberg is always very interested in reading the report... but so far he does not like what he sees, and so we are still on the Lamictal. Hope that helps, Caroline G. > How does deal with seizures? Are anti-seizure meds the norm? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I have three sons on the protocol, two of whom had absence seizures. Noah had a grand-mal seizure as well. After about a year on antivirals, we successfully weaned from Zarontin. We attempted to wean Noah, but that's when he had his grand mal, so he went back on seizure meds. About six months later, we weaned him again and were successful. He's been almost a year seizure med free with no relapses. I believe our situation was more conducive to weaning them off seizure meds and taking a " wait and see " attitude because their seizures were mostly absence--although would have memory lapses and a little trouble orienting back to his environment, there were no convulsions, etc., that endangered his health. All the best, Robyn p.s. Dr. G is very cautious when it comes to weaning them off seizure meds. ________________________________ From: Caroline Glover <sfglover@...> Sent: Wed, January 27, 2010 4:40:30 PM Subject: Re: and Seizures One of my 2 sons started having seizures at age 3 1/2. He has been a patient of Dr. Goldberg since age 4. He had his last seizure at age 5 (we hope). At present (age 9), he his still on Lamictal for seizure prevention because his EEGs still show ³spikes² indicating that if weaned from anticonvulsant meds, he has high odds of having seizures again. His seizures were very serious... at one point he was diagnosed with Lennox-Gastaut Syndrome. He lost his ability to speak and walk, and had to relearn those skills. I was told that he presented like a stroke victim. He was in status epilepticus initially. Once we started him on antivirals (at about age 4), his abilities made a HUGE jump that first week. He has recovered much of the ground he lost when ill but is still behind his peers in some areas (although ahead in others). Dr. Goldberg is very interested in eventually getting him weaned from the anticonvulsants but agrees with my son¹s neurogeneticist that it is not safe to do so at this time. When my son has his EEGs Dr. Goldberg is always very interested in reading the report... but so far he does not like what he sees, and so we are still on the Lamictal. Hope that helps, Caroline G. > How does deal with seizures? Are anti-seizure meds the norm? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Robyn - Thank you so much for this information. My son was just diagnosed in Sept with seizures and I was really concerned about putting him on anti-seizure meds. Dr. Goldberg knows that this is what I really want is to get him off of the meds as soon as possible. So, your story gives me hope that we can do this successfully in the future. Laureen On 1/28/10 11:32 AM, " Robyn & Greg Coggins " <rngcoggs@...> wrote: > > > > > > I have three sons on the protocol, two of whom had absence seizures. Noah > had a grand-mal seizure as well. After about a year on antivirals, we > successfully weaned from Zarontin. We attempted to wean Noah, but > that's when he had his grand mal, so he went back on seizure meds. About six > months later, we weaned him again and were successful. He's been almost a year > seizure med free with no relapses. I believe our situation was more conducive > to weaning them off seizure meds and taking a " wait and see " attitude because > their seizures were mostly absence--although would have memory lapses > and a little trouble orienting back to his environment, there were no > convulsions, etc., that endangered his health. > > All the best, > > Robyn > > p.s. Dr. G is very cautious when it comes to weaning them off seizure meds. > > ________________________________ > From: Caroline Glover <sfglover@... <mailto:sfglover%40mac.com> > > <mailto:%40> > Sent: Wed, January 27, 2010 4:40:30 PM > Subject: Re: and Seizures > > One of my 2 sons started having seizures at age 3 1/2. He has been a > patient of Dr. Goldberg since age 4. He had his last seizure at age 5 (we > hope). > > At present (age 9), he his still on Lamictal for seizure prevention because > his EEGs still show ©øspikes©÷ indicating that if weaned from anticonvulsant > meds, he has high odds of having seizures again. His seizures were very > serious... at one point he was diagnosed with Lennox-Gastaut Syndrome. He > lost his ability to speak and walk, and had to relearn those skills. I was > told that he presented like a stroke victim. He was in status epilepticus > initially. > > Once we started him on antivirals (at about age 4), his abilities made a > HUGE jump that first week. He has recovered much of the ground he lost when > ill but is still behind his peers in some areas (although ahead in others). > > Dr. Goldberg is very interested in eventually getting him weaned from the > anticonvulsants but agrees with my son©ös neurogeneticist that it is not > safe to do so at this time. > > When my son has his EEGs Dr. Goldberg is always very interested in reading > the report... but so far he does not like what he sees, and so we are still > on the Lamictal. > > Hope that helps, > Caroline G. > >> > How does deal with seizures? Are anti-seizure meds the norm? > > Quote Link to comment Share on other sites More sharing options...
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