Re: Re: For those whose children have seizures....

[Guest guest]

Hello! I wrote a few weeks back. I want to give you a success story.. my son has had seizures for 8 long years. He was never controlled by medicines....and this last summer a newer seizure medicine almost killed him. 6 day stay $39,000...and no answers. My son had aseptic meningitis which the doctors didn't catch. It took over 2 months to get my son well. He didn't know his name or no his dogs name. It depended on what part of the brain that it came from--he could tell you all about tractors. When he talked it would be real slow like a stroke victim. This was the most horrible thing to witness....My son has many food allergies.....and other allergies. I seen violent reactions to many things that would induce seizures. After his illness he started having drop episodes were he would just

faint. We broke a toilet one month ago. We were on the way to buying a helmet or wheel chair. This was a normal 13 year old that had seizures. Long story short.... From this group I started finding more and more out. thank you!!! I started seeing a gut issue. That was why he was having seizures. I started a good quality probodic.....then just last week I started a broad range enzyme. This was our miracle. My son has been seizure free (during the day) since. My son is getting his life back....no more drop episodes. All along it has been a gut issue.....simply amazing. He still have some in his sleep....but even those are getting quiet and little. I really believe that it will take time but they will be gone too. It has only been one week.Any questions please email me. On one website on enzymes it talks about seizure patients enzymes helping

with metabolic issues. If one waits for scientific proof....they will never get it...the medical field couldn't make any money. My son just got up to go the bathroom...and didn't faint and I didn't even hear a seizure. This is such a miracle.Debbidsprang@...Subject: Re: For those whose children have seizures....To: mb12 valtrex Date: Sunday, November 14, 2010, 1:21 AM

Pamela,

The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff.

We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.

We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.

~Jen

>

> Our son could not tolerate a routine EEG unless he was sedated. Sedation

> options are VERY limited for an EEG. We chose a Spect and found evidence of

> Seizures there. We have him on Lamictal now and he has responded well to

> though it took awhile to find the best dose for him.

>

>

>

> Prior to starting Lamictal my son would have "Rage" seizures, likely partial

> focal seizures. He would go into a Rage and become violent with no

> antecedent. They averaged 3 a week and on average lasted 45 minutes. They

> were seen as meltdowns or tantrums. If you tried to intervene to get him to

> communicate what was wrong or soothe him he would project the violence onto

> you. He was really inconsolable. Frequently, his pupils were dilated and

> he would get a "wild animal" look in his eyes.

>

>

>

> Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it

> on a credit card and I'm so glad we had it done. These "Rages" slowly faded

> away as we reached a therapeutic dose of Lamictal. He became calmer, more

> content and more tuned in. Our very wise DAN! doctor was convinced he was

> having seizures for some time, but I was not willing to use an

> anti-convulsant medication on him until I had some sort of medical test

> showing it. We had our Spect done here. www.lifebridgediagnostics.com

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Nanci

> Sent: Monday, January 18, 2010 9:02 AM

> To: mb12 valtrex

> Subject: For those whose children have seizures....

>

>

>

>

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a

> Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in

> duration over the years, but I don't see them going away as he "grows out of

> it". He is almost stronger than me already and I worry about when he gets

> older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence

> seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about

> their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having

> an episode at the time. An alternative they told me about was an ambulatory

> EEG that he could wear at home for a day or two. Although they couldn't give

> me an exact price, it was ballpark about $3,000/per day. We can't afford

> that, and insurance would only cover up to $500. And a video EEG (in

> hospital) is even more expensive.

>

> Nanci

>

[Guest guest]

Congratulations, this is a great story to start the morning with. I am sooo happy for both of you.nancy j.

Help TACA win $50,000. Please vote every day in November. http://www.refresheverything.com/tacarealhelpnow

Need help now? http://www.talkaboutcuringautism.org/contact/real-help-now-live-chat.htm--- Subject: Re: Re: For those whose children have seizures....To: mb12 valtrex Cc: dsprang@...Date: Sunday, November 14, 2010, 3:27 AM

Hello! I wrote a few weeks back. I want to give you a success story.. my son has had seizures for 8 long years. He was never controlled by medicines....and this last summer a newer seizure medicine almost killed him. 6 day stay $39,000...and no answers. My son had aseptic meningitis which the doctors didn't catch. It took over 2 months to get my son well. He didn't know his name or no his dogs name. It depended on what part of the brain that it came from--he could tell you all about tractors. When he talked it would be real slow like a stroke victim. This was the most horrible thing to witness....My son has many food allergies.....and other allergies. I seen violent reactions to many things that would induce seizures. After his illness he started having drop episodes were

he would just

faint. We broke a toilet one month ago. We were on the way to buying a helmet or wheel chair. This was a normal 13 year old that had seizures. Long story short.... From this group I started finding more and more out. thank you!!! I started seeing a gut issue. That was why he was having seizures. I started a good quality probodic.....then just last week I started a broad range enzyme. This was our miracle. My son has been seizure free (during the day) since. My son is getting his life back....no more drop episodes. All along it has been a gut issue.....simply amazing. He still have some in his sleep....but even those are getting quiet and little. I really believe that it will take time but they will be gone too. It has only been one week.Any questions please email me. On one website on enzymes it talks about seizure patients enzymes helping

with metabolic issues. If one waits for scientific proof....they will never get it...the medical field couldn't make any money. My son just got up to go the bathroom...and didn't faint and I didn't even hear a seizure. This is such a miracle.Debbidsprang@...Subject: Re: For those whose children have seizures....To: mb12 valtrex Date: Sunday, November 14, 2010, 1:21 AM

Pamela,

The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff.

We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.

We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.

~Jen

>

> Our son could not tolerate a routine EEG unless he was sedated. Sedation

> options are VERY limited for an EEG. We chose a Spect and found evidence of

> Seizures there. We have him on Lamictal now and he has responded well to

> though it took awhile to find the best dose for him.

>

>

>

> Prior to starting Lamictal my son would have "Rage" seizures, likely partial

> focal seizures. He would go into a Rage and become violent with no

> antecedent. They averaged 3 a week and on average lasted 45 minutes. They

> were seen as meltdowns or tantrums. If you tried to intervene to get him to

> communicate what was wrong or soothe him he would project the violence onto

> you. He was really inconsolable. Frequently, his pupils were dilated and

> he would get a "wild animal" look in his eyes.

>

>

>

> Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it

> on a credit card and I'm so glad we had it done. These "Rages" slowly faded

> away as we reached a therapeutic dose of Lamictal. He became calmer, more

> content and more tuned in. Our very wise DAN! doctor was convinced he was

> having seizures for some time, but I was not willing to use an

> anti-convulsant medication on him until I had some sort of medical test

> showing it. We had our Spect done here. www.lifebridgediagnostics.com

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Nanci

> Sent: Monday, January 18, 2010 9:02 AM

> To: mb12 valtrex

> Subject: For those whose children have seizures....

>

>

>

>

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a

> Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in

> duration over the years, but I don't see them going away as he "grows out of

> it". He is almost stronger than me already and I worry about when he gets

> older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence

> seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about

> their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having

> an episode at the time. An alternative they told me about was an ambulatory

> EEG that he could wear at home for a day or two. Although they couldn't give

> me an exact price, it was ballpark about $3,000/per day. We can't afford

> that, and insurance would only cover up to $500. And a video EEG (in

> hospital) is even more expensive.

>

> Nanci

>

[Guest guest]

Pamela--My daughter is doing the exact same----plese e-mail off line so we can talk::: mY DAUGHTER STARTS TO YAWN AT 9:30 am EVERY MORNING AND by 10000 AM you can not get her attention due to spaceyness and usually with in an hour there is a meltdown dur to her not being able to control her environment in an extrreme way by telling everyone exactly what to say to include the inflection and it gets really bad at night right before she goes to sleep---eyes are dialated for sure and it seems she geats upset after I notice the eyes---she gets stuck in time and wants to return to the beginning of a sequence that happened--and when she can not--she goes off in almost like a psuycotic rage---is this seizures???? bill.luce@...

To: mb12 valtrex Sent: Sat, November 13, 2010 4:21:04 PMSubject: Re: For those whose children have seizures....

Pamela,The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff. We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new

neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the

whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.~Jen >> Our son could not tolerate a routine EEG unless he was sedated. Sedation> options are VERY limited for an EEG. We chose a Spect and found evidence of> Seizures there. We have him on Lamictal now and he has responded well to> though it took awhile to find the best dose for him.> > > > Prior to starting Lamictal my son would have "Rage" seizures, likely partial> focal seizures. He would go into a Rage and become violent with no> antecedent. They averaged 3 a week and on average lasted 45 minutes. They> were seen as

meltdowns or tantrums. If you tried to intervene to get him to> communicate what was wrong or soothe him he would project the violence onto> you. He was really inconsolable. Frequently, his pupils were dilated and> he would get a "wild animal" look in his eyes. > > > > Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it> on a credit card and I'm so glad we had it done. These "Rages" slowly faded> away as we reached a therapeutic dose of Lamictal. He became calmer, more> content and more tuned in. Our very wise DAN! doctor was convinced he was> having seizures for some time, but I was not willing to use an> anti-convulsant medication on him until I had some sort of medical test> showing it. We had our Spect done here. www.lifebridgediagnostics.com> > >

> Pamela > > > > From: mb12 valtrex [mailto:mb12 valtrex ] On> Behalf Of Nanci> Sent: Monday, January 18, 2010 9:02 AM> To: mb12 valtrex > Subject: For those whose children have seizures....> > > > > > We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a> Neurologist.> > He has been having rages since he was 5 years old. They have lessened in> duration over the years, but I

don't see them going away as he "grows out of> it". He is almost stronger than me already and I worry about when he gets> older. I am certain it is not yeast or metals.> > He also sometimes stares off into space, which I read can be an absence> seizure. He does not blink nor respond to his name.> > Can those whose children have the rage and/or absence tell me more about> their experiences? > > I have heard a regular EEG will not pick up anything if they are not having> an episode at the time. An alternative they told me about was an ambulatory> EEG that he could wear at home for a day or two. Although they couldn't give> me an exact price, it was ballpark about $3,000/per day. We can't afford> that, and insurance would only cover up to $500. And a video EEG (in> hospital) is even more expensive.> >

Nanci>

[Guest guest]

Sounds loke PANDAS. GO tot the website www.pandasnetwork.org to read about the symptoms of PANDAS and treatments.

Subject: Re: Re: For those whose children have seizures....To: mb12 valtrex Date: Monday, November 15, 2010, 3:43 AM

Pamela--My daughter is doing the exact same----plese e-mail off line so we can talk::: mY DAUGHTER STARTS TO YAWN AT 9:30 am EVERY MORNING AND by 10000 AM you can not get her attention due to spaceyness and usually with in an hour there is a meltdown dur to her not being able to control her environment in an extrreme way by telling everyone exactly what to say to include the inflection and it gets really bad at night right before she goes to sleep---eyes are dialated for sure and it seems she geats upset after I notice the eyes---she gets stuck in time and wants to return to the beginning of a sequence that happened--and when she can not--she goes off in almost like a psuycotic rage---is this seizures???? bill.luce@...

To: mb12 valtrex Sent: Sat, November 13, 2010 4:21:04 PMSubject: Re: For those whose children have seizures....

Pamela,The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff. We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new

neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the

whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.~Jen >> Our son could not tolerate a routine EEG unless he was sedated. Sedation> options are VERY limited for an EEG. We chose a Spect and found evidence of> Seizures there. We have him on Lamictal now and he has responded well to> though it took awhile to find the best dose for him.> > > > Prior to starting Lamictal my son would have "Rage" seizures, likely partial> focal seizures. He would go into a Rage and become violent with no> antecedent. They averaged 3 a week and on average lasted 45

minutes. They> were seen as meltdowns or tantrums. If you tried to intervene to get him to> communicate what was wrong or soothe him he would project the violence onto> you. He was really inconsolable. Frequently, his pupils were dilated and> he would get a "wild animal" look in his eyes. > > > > Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it> on a credit card and I'm so glad we had it done. These "Rages" slowly faded> away as we reached a therapeutic dose of Lamictal. He became calmer, more> content and more tuned in. Our very wise DAN! doctor was convinced he was> having seizures for some time, but I was not willing to use an> anti-convulsant medication on him until I had some sort of medical test> showing it. We had our Spect done here. www.lifebridgediagnostics.com> > > > Pamela > > > > From: mb12 valtrex [mailto:mb12 valtrex ] On> Behalf Of Nanci> Sent: Monday, January 18, 2010 9:02 AM> To: mb12 valtrex > Subject: For those whose children have seizures....> > > > > > We will soon be getting our 11 yo

(Aspergers') evaluated for seizures by a> Neurologist.> > He has been having rages since he was 5 years old. They have lessened in> duration over the years, but I don't see them going away as he "grows out of> it". He is almost stronger than me already and I worry about when he gets> older. I am certain it is not yeast or metals.> > He also sometimes stares off into space, which I read can be an absence> seizure. He does not blink nor respond to his name.> > Can those whose children have the rage and/or absence tell me more about> their experiences? > > I have heard a regular EEG will not pick up anything if they are not having> an episode at the time. An alternative they told me about was an ambulatory> EEG that he could wear at home for a day or two. Although they couldn't give> me an exact price, it was ballpark about $3,000/per day.

We can't afford> that, and insurance would only cover up to $500. And a video EEG (in> hospital) is even more expensive.> > Nanci>

[Guest guest]

Just an FYI - sometimes seizures are viral. Pockets of HHV-6, CMV or EBV in the brain.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Pamela,

The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff.

We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.

We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.

~Jen

>

> Our son could not tolerate a routine EEG unless he was sedated. Sedation

> options are VERY limited for an EEG. We chose a Spect and found evidence of

> Seizures there. We have him on Lamictal now and he has responded well to

> though it took awhile to find the best dose for him.

>

>

>

> Prior to starting Lamictal my son would have "Rage" seizures, likely partial

> focal seizures. He would go into a Rage and become violent with no

> antecedent. They averaged 3 a week and on average lasted 45 minutes. They

> were seen as meltdowns or tantrums. If you tried to intervene to get him to

> communicate what was wrong or soothe him he would project the violence onto

> you. He was really inconsolable. Frequently, his pupils were dilated and

> he would get a "wild animal" look in his eyes.

>

>

>

> Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it

> on a credit card and I'm so glad we had it done. These "Rages" slowly faded

> away as we reached a therapeutic dose of Lamictal. He became calmer, more

> content and more tuned in. Our very wise DAN! doctor was convinced he was

> having seizures for some time, but I was not willing to use an

> anti-convulsant medication on him until I had some sort of medical test

> showing it. We had our Spect done here. www.lifebridgediagnostics.com

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Nanci

> Sent: Monday, January 18, 2010 9:02 AM

> To: mb12 valtrex

> Subject: For those whose children have seizures....

>

>

>

>

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a

> Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in

> duration over the years, but I don't see them going away as he "grows out of

> it". He is almost stronger than me already and I worry about when he gets

> older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence

> seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about

> their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having

> an episode at the time. An alternative they told me about was an ambulatory

> EEG that he could wear at home for a day or two. Although they couldn't give

> me an exact price, it was ballpark about $3,000/per day. We can't afford

> that, and insurance would only cover up to $500. And a video EEG (in

> hospital) is even more expensive.

>

> Nanci

>

[Guest guest]

Forgot to mention that for those kids, antivirals are the better choice than anti-convulsants. You're neuros aren't wrong to think it isn't epileptic.Just an FYI - sometimes seizures are viral. Pockets of HHV-6, CMV or EBV in the brain.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Pamela,

The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff.

We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.

We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.

~Jen

>

> Our son could not tolerate a routine EEG unless he was sedated. Sedation

> options are VERY limited for an EEG. We chose a Spect and found evidence of

> Seizures there. We have him on Lamictal now and he has responded well to

> though it took awhile to find the best dose for him.

>

>

>

> Prior to starting Lamictal my son would have "Rage" seizures, likely partial

> focal seizures. He would go into a Rage and become violent with no

> antecedent. They averaged 3 a week and on average lasted 45 minutes. They

> were seen as meltdowns or tantrums. If you tried to intervene to get him to

> communicate what was wrong or soothe him he would project the violence onto

> you. He was really inconsolable. Frequently, his pupils were dilated and

> he would get a "wild animal" look in his eyes.

>

>

>

> Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it

> on a credit card and I'm so glad we had it done. These "Rages" slowly faded

> away as we reached a therapeutic dose of Lamictal. He became calmer, more

> content and more tuned in. Our very wise DAN! doctor was convinced he was

> having seizures for some time, but I was not willing to use an

> anti-convulsant medication on him until I had some sort of medical test

> showing it. We had our Spect done here. www.lifebridgediagnostics.com

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Nanci

> Sent: Monday, January 18, 2010 9:02 AM

> To: mb12 valtrex

> Subject: For those whose children have seizures....

>

>

>

>

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a

> Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in

> duration over the years, but I don't see them going away as he "grows out of

> it". He is almost stronger than me already and I worry about when he gets

> older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence

> seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about

> their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having

> an episode at the time. An alternative they told me about was an ambulatory

> EEG that he could wear at home for a day or two. Although they couldn't give

> me an exact price, it was ballpark about $3,000/per day. We can't afford

> that, and insurance would only cover up to $500. And a video EEG (in

> hospital) is even more expensive.

>

> Nanci

>

[Guest guest]

Yes we are finding my son is viral... weak positives for HHV-3 and HHV-6. HHV-6 is a known febrile seizure inducer (my son's issue)

 

Just an FYI - sometimes seizures are viral.   Pockets of HHV-6, CMV or EBV in the brain.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Pamela,

The seizures that you are describing fit my son's symptoms/seizures exactly! The dilation creeps me out. I thought that we were the only ones that had this happen! Sometimes we can't even see the color of my son's eyes because the pupils become so dilated. Then the pupils will dilate and contract numerous times in a matter of minutes. My son's seizures tend to come in cycles as well that last for about a week and then they are gone for three weeks or so and come back. Weird stuff.

We have had numerous EEG's and have had nothing abnormal show up. The neuros have put my son on too many anti-convulsant medications to count, but all have led to the worsening of my son's seizures. My son still has seizures, but the neuros are convinced that they are non-epileptic since he hasn't responded to any of the medications nor has shown any abnormal brain activity on the EEG tests. I don't buy their diagnosis and am shopping around for new neuros. I have been begging for a SPECT scan or a MEG scan, but the doctors that I have had thus far have been resistant to ordering them for whatever reason.

We did try the GFCF diet a few years back - with horrible consequences. His seizures got much, much worse while on the diet. In fact, we had no idea that my son was having any type of seizure activity until we went GFCF and saw the raging type behavior that we relate to seizure behavior now. We took him off the diet and he looked and felt a lot better. We still have seizures, but not as numerous as when we were on GFCF. His worsening symptoms could have been due to the detox that takes place on the GFCF diet and this threw off his body chemistry enough to lower his seizure threshold. Who knows? Going GFCF might be another road to travel down in the future, but honestly, my family is just not ready to go down that road again quite yet. It really takes a lot of committment on the part of the whole family to do the diet effectively. I venture to guess that there is more to my son's case than just gluten sensitivity however.

~Jen

>

> Our son could not tolerate a routine EEG unless he was sedated. Sedation

> options are VERY limited for an EEG. We chose a Spect and found evidence of

> Seizures there. We have him on Lamictal now and he has responded well to

> though it took awhile to find the best dose for him.

>

>

>

> Prior to starting Lamictal my son would have " Rage " seizures, likely partial

> focal seizures. He would go into a Rage and become violent with no

> antecedent. They averaged 3 a week and on average lasted 45 minutes. They

> were seen as meltdowns or tantrums. If you tried to intervene to get him to

> communicate what was wrong or soothe him he would project the violence onto

> you. He was really inconsolable. Frequently, his pupils were dilated and

> he would get a " wild animal " look in his eyes.

>

>

>

> Insurance did not pay a dime on our Spect Scan. It cost $1500. We put it

> on a credit card and I'm so glad we had it done. These " Rages " slowly faded

> away as we reached a therapeutic dose of Lamictal. He became calmer, more

> content and more tuned in. Our very wise DAN! doctor was convinced he was

> having seizures for some time, but I was not willing to use an

> anti-convulsant medication on him until I had some sort of medical test

> showing it. We had our Spect done here. www.lifebridgediagnostics.com

>

>

>

> Pamela

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of Nanci

> Sent: Monday, January 18, 2010 9:02 AM

> To: mb12 valtrex

> Subject: For those whose children have seizures....

>

>

>

>

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a

> Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in

> duration over the years, but I don't see them going away as he " grows out of

> it " . He is almost stronger than me already and I worry about when he gets

> older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence

> seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about

> their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having

> an episode at the time. An alternative they told me about was an ambulatory

> EEG that he could wear at home for a day or two. Although they couldn't give

> me an exact price, it was ballpark about $3,000/per day. We can't afford

> that, and insurance would only cover up to $500. And a video EEG (in

> hospital) is even more expensive.

>

> Nanci

>

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

We have just started seeing the same acupuncturist....my daughter has seem to calm down a lot and be able to focus a lot better. Today I also saw a mother who brought in a baby who has been having seizures. Apparently he sees a lot of kids on the spectrum and have seizures. You may want to call them to get more info. To: mb12 valtrex Sent: Tue, November 16, 2010 7:15:16 AMSubject: Re: For those whose children have seizures....

My son is getting acupuncture from a good acupuncturist for general ASD symptoms. I found the doctor was also treating epilepsy/seizure using acupuncture. I saw a mom several times carrying her very young baby in the clinic. Later I learned that the baby was getting acupuncture for epilepsy, and the result was super good – after 5 treatments the gap between two epilepsies is extended from every half hour to one day. If you live in the Bay areas, you may consider having a try. Not all the acupuncturists are the same, but this one is special. You can find more info from his website at http://www.scalpacupuncture.org/. The good part of using this doctor is that you can see the result from the first treatment. If you don't see immediate result from a few visits, you can just go away to save money.

>

> We will soon be getting our 11 yo (Aspergers') evaluated for seizures by a Neurologist.

>

> He has been having rages since he was 5 years old. They have lessened in duration over the years, but I don't see them going away as he "grows out of it". He is almost stronger than me already and I worry about when he gets older. I am certain it is not yeast or metals.

>

> He also sometimes stares off into space, which I read can be an absence seizure. He does not blink nor respond to his name.

>

> Can those whose children have the rage and/or absence tell me more about their experiences?

>

> I have heard a regular EEG will not pick up anything if they are not having an episode at the time. An alternative they told me about was an ambulatory EEG that he could wear at home for a day or two. Although they couldn't give me an exact price, it was ballpark about $3,000/per day. We can't afford that, and insurance would only cover up to $500. And a video EEG (in hospital) is even more expensive.

>

> Nanci

>