Re: behaviors with seizure control

September 6, 2001

Patti:

Sounds like.........Josh-the irritability, the obsessive compulsive problem with an old pair of running shoes-I have had to carry him to school because he wouldn't walk in his new shoes-the old ones are full of holes and too small. May-be he is on to something-may-be he can figure out a way to solve this problem . Please let me know.

I'm so happy that things are going well for you-I hope the blood work turns out well too.

Hugs

Diane

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

I found what Dr. S. said to be interesting, since I had received a report today from another dietician in Portland. This report was a study done on the Keto diet that showed improved behavior and attitude for kids on the diet!

--'s mom

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

I found what Dr. S. said to be interesting, since I had received a report today from another dietician in Portland. This report was a study done on the Keto diet that showed improved behavior and attitude for kids on the diet!

--'s mom

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

Arrghhh. . . I have actually had to hide old tennis

shoes and old t-shirts to get away from wearing

them! I'd like to hear more, too!--d

--- Diane Wall wrote:

> Patti:

>

> Sounds like.........Josh-the irritability, the

> obsessive compulsive problem with an old pair of

> running shoes-I have had to carry him to school

> because he wouldn't walk in his new shoes-the old

> ones are full of holes and too small. May-be he is

> on to something-may-be he can figure out a way to

> solve this problem . Please let me know.

>

> I'm so happy that things are going well for you-I

> hope the blood work turns out well too.

>

> Hugs

> Diane

> behaviors with seizure

> control

>

> Heard something interesting today from our neuro

> at our (almost) annual Keto follow-up visit......

> now, this is the " successful " Dr. S from Portland,

> Oregon, with many, many happy Keto patients.......

> he said that often, when they get seizures under

> control (I don't know if he meant Keto kids or those

> on meds, too) , they'll see irritability and various

> crabby, acting out type behaviors, more " stimming " ,

> etc. Almost as if the seizures had been a " release "

> and now the brain doesn't know what to do with all

> of it's pent up energy?? I had been telling him that

> although we are very pleased with Katera's seizure

> control, she seems MUCH more irritable..... lots of

> crabby, cranky days and lots of finger chewing and

> other " irritablility " type things. (She is very

> delayed and not able to tell us how she's feeling in

> any other way). I was surprized to hear he thought

> this was common in kids with good seizure control.

> Anyone else been told this by their doctors? She

> definitely has sensory intregration issues but it's

> a lot worse in the past couple of months.

>

> We are also being sent in to the hospital in the

> morning for a renal ultrasound, urine and blood

> draws..... Katera has had two episodes in the past

> two months of extreme crying/screaming (the worst

> I've ever seen in a kid) that has had a very sudden

> onset and lasted several hours without any reason

> that we can figure out. He just wants to rule out

> stones. She is on such a low ratio (2.65:1) that he

> thinks it's unlikely but you never know.

>

> We were pleased to find out that she had grown

> about 5 cms in height in the past year and as an

> added bonus, she seems to have had an increase of

> one cm in head circumference..... not bad for a kid

> with microcephaly who hadn't had ANY head growth for

> a full year and a half prior to starting the

> diet..... we had given up measuring....too

> depressing!

>

> Patti, mom to Katera, age 5 (partial ACC, micro,

> global delays) Keto since 10-10-2000...... med free.

>

September 6, 2001

Well, chum. . .you know we " chatted " about this about

a month ago. I definitely agree. It's such a

trade-off. In fact, I'm going through it again --

when has good seizure-free streaks, she's much

more difficult to handle. When she has her " upon

waking " seizure she's pleasant, happy and engaged the

rest of the day. Of course, I have never been told

this by a doc -- but it's a big reason why I believe

that, for , this has to do with some sort of

energy balance issue -- it's like a valve that needs

to release to get her in balance and when the valve

doesn't go off, the pressure builds. . . gosh, sure

wish we could get to the bottom of stuff like this!--D

--- Patti wrote:

> Heard something interesting today from our neuro at

> our (almost) annual Keto follow-up visit...... now,

> this is the " successful " Dr. S from Portland,

> Oregon, with many, many happy Keto patients.......

> he said that often, when they get seizures under

> control (I don't know if he meant Keto kids or those

> on meds, too) , they'll see irritability and various

> crabby, acting out type behaviors, more " stimming " ,

> etc. Almost as if the seizures had been a " release "

> and now the brain doesn't know what to do with all

> of it's pent up energy?? I had been telling him that

> although we are very pleased with Katera's seizure

> control, she seems MUCH more irritable..... lots of

> crabby, cranky days and lots of finger chewing and

> other " irritablility " type things. (She is very

> delayed and not able to tell us how she's feeling in

> any other way). I was surprized to hear he thought

> this was common in kids with good seizure control.

> Anyone else been told this by their doctors? She

> definitely has sensory intregration issues but it's

> a lot worse in the past couple of months.

>

> We are also being sent in to the hospital in the

> morning for a renal ultrasound, urine and blood

> draws..... Katera has had two episodes in the past

> two months of extreme crying/screaming (the worst

> I've ever seen in a kid) that has had a very sudden

> onset and lasted several hours without any reason

> that we can figure out. He just wants to rule out

> stones. She is on such a low ratio (2.65:1) that he

> thinks it's unlikely but you never know.

>

> We were pleased to find out that she had grown about

> 5 cms in height in the past year and as an added

> bonus, she seems to have had an increase of one cm

> in head circumference..... not bad for a kid with

> microcephaly who hadn't had ANY head growth for a

> full year and a half prior to starting the diet.....

> we had given up measuring....too depressing!

>

> Patti, mom to Katera, age 5 (partial ACC, micro,

> global delays) Keto since 10-10-2000...... med free.

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

September 6, 2001

Well, chum. . .you know we " chatted " about this about

a month ago. I definitely agree. It's such a

trade-off. In fact, I'm going through it again --

when has good seizure-free streaks, she's much

more difficult to handle. When she has her " upon

waking " seizure she's pleasant, happy and engaged the

rest of the day. Of course, I have never been told

this by a doc -- but it's a big reason why I believe

that, for , this has to do with some sort of

energy balance issue -- it's like a valve that needs

to release to get her in balance and when the valve

doesn't go off, the pressure builds. . . gosh, sure

wish we could get to the bottom of stuff like this!--D

--- Patti wrote:

> Heard something interesting today from our neuro at

> our (almost) annual Keto follow-up visit...... now,

> this is the " successful " Dr. S from Portland,

> Oregon, with many, many happy Keto patients.......

> he said that often, when they get seizures under

> control (I don't know if he meant Keto kids or those

> on meds, too) , they'll see irritability and various

> crabby, acting out type behaviors, more " stimming " ,

> etc. Almost as if the seizures had been a " release "

> and now the brain doesn't know what to do with all

> of it's pent up energy?? I had been telling him that

> although we are very pleased with Katera's seizure

> control, she seems MUCH more irritable..... lots of

> crabby, cranky days and lots of finger chewing and

> other " irritablility " type things. (She is very

> delayed and not able to tell us how she's feeling in

> any other way). I was surprized to hear he thought

> this was common in kids with good seizure control.

> Anyone else been told this by their doctors? She

> definitely has sensory intregration issues but it's

> a lot worse in the past couple of months.

>

> We are also being sent in to the hospital in the

> morning for a renal ultrasound, urine and blood

> draws..... Katera has had two episodes in the past

> two months of extreme crying/screaming (the worst

> I've ever seen in a kid) that has had a very sudden

> onset and lasted several hours without any reason

> that we can figure out. He just wants to rule out

> stones. She is on such a low ratio (2.65:1) that he

> thinks it's unlikely but you never know.

>

> We were pleased to find out that she had grown about

> 5 cms in height in the past year and as an added

> bonus, she seems to have had an increase of one cm

> in head circumference..... not bad for a kid with

> microcephaly who hadn't had ANY head growth for a

> full year and a half prior to starting the diet.....

> we had given up measuring....too depressing!

>

> Patti, mom to Katera, age 5 (partial ACC, micro,

> global delays) Keto since 10-10-2000...... med free.

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

September 6, 2001

Dear :

Please do not get me wrong-'s life has improved 10,000% and try to beat that one-but I have noticed him to be more irritable (not more irritable then when he was on AED's) since he has stopped having seizures. It slowly grew in the last 5 to 6 months and his obsessive behavior has become more noticeable. UNLESS I am just experiencing normal childhood behavior-of which he has not had any since he has been on drugs since he was a baby. May-be, he does need an avenue to reduce his pent up frustrations?

The diet has been nothing less than a MIRACLE for us, we are overflowing with continuous joy and surprise at the changes in our son.

Hugs

Diane

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

Dear :

Please do not get me wrong-'s life has improved 10,000% and try to beat that one-but I have noticed him to be more irritable (not more irritable then when he was on AED's) since he has stopped having seizures. It slowly grew in the last 5 to 6 months and his obsessive behavior has become more noticeable. UNLESS I am just experiencing normal childhood behavior-of which he has not had any since he has been on drugs since he was a baby. May-be, he does need an avenue to reduce his pent up frustrations?

The diet has been nothing less than a MIRACLE for us, we are overflowing with continuous joy and surprise at the changes in our son.

Hugs

Diane

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

Dear :

Please do not get me wrong-'s life has improved 10,000% and try to beat that one-but I have noticed him to be more irritable (not more irritable then when he was on AED's) since he has stopped having seizures. It slowly grew in the last 5 to 6 months and his obsessive behavior has become more noticeable. UNLESS I am just experiencing normal childhood behavior-of which he has not had any since he has been on drugs since he was a baby. May-be, he does need an avenue to reduce his pent up frustrations?

The diet has been nothing less than a MIRACLE for us, we are overflowing with continuous joy and surprise at the changes in our son.

Hugs

Diane

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

What I notice with is that on his really good days he fights more with his siblings. I think it is because he is more aware of what is going on around him on these days, and he has more to be irritated by. Also, on the good days he is more aware of he is limited compared to other kids. I think that when we make it past all of this, I will have a little boy who will need some counseling! I can't imagine this rigid diet not having a long term emotional reaction. So...I can't say that I am really convinced by the report I read...but I thought it was interesting!

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

What I notice with is that on his really good days he fights more with his siblings. I think it is because he is more aware of what is going on around him on these days, and he has more to be irritated by. Also, on the good days he is more aware of he is limited compared to other kids. I think that when we make it past all of this, I will have a little boy who will need some counseling! I can't imagine this rigid diet not having a long term emotional reaction. So...I can't say that I am really convinced by the report I read...but I thought it was interesting!

behaviors with seizure control

Heard something interesting today from our neuro at our (almost) annual Keto follow-up visit...... now, this is the "successful" Dr. S from Portland, Oregon, with many, many happy Keto patients....... he said that often, when they get seizures under control (I don't know if he meant Keto kids or those on meds, too) , they'll see irritability and various crabby, acting out type behaviors, more "stimming", etc. Almost as if the seizures had been a "release" and now the brain doesn't know what to do with all of it's pent up energy?? I had been telling him that although we are very pleased with Katera's seizure control, she seems MUCH more irritable..... lots of crabby, cranky days and lots of finger chewing and other "irritablility" type things. (She is very delayed and not able to tell us how she's feeling in any other way). I was surprized to hear he thought this was common in kids with good seizure control. Anyone else been told this by their doctors? She definitely has sensory intregration issues but it's a lot worse in the past couple of months.

We are also being sent in to the hospital in the morning for a renal ultrasound, urine and blood draws..... Katera has had two episodes in the past two months of extreme crying/screaming (the worst I've ever seen in a kid) that has had a very sudden onset and lasted several hours without any reason that we can figure out. He just wants to rule out stones. She is on such a low ratio (2.65:1) that he thinks it's unlikely but you never know.

We were pleased to find out that she had grown about 5 cms in height in the past year and as an added bonus, she seems to have had an increase of one cm in head circumference..... not bad for a kid with microcephaly who hadn't had ANY head growth for a full year and a half prior to starting the diet..... we had given up measuring....too depressing!

Patti, mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000...... med free. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

September 6, 2001

DeEtte:

They say if you work on something long enough it, your bound to figure it out. May-be we will figure out a way to get that pent up frustration of energy out someother way? In the mean-time, we must hide things long before they become obsessive about them, long before they wear out or get too small. We must get into the room before they strike their sister or brother. And we must keep our sence of humour and love them for the special ((stubborn)) little sweethearts they are.

Hugs

Diane

behaviors with seizure> control> > > Heard something interesting today from our neuro> at our (almost) annual Keto follow-up visit......> now, this is the "successful" Dr. S from Portland,> Oregon, with many, many happy Keto patients.......> he said that often, when they get seizures under> control (I don't know if he meant Keto kids or those> on meds, too) , they'll see irritability and various> crabby, acting out type behaviors, more "stimming",> etc. Almost as if the seizures had been a "release"> and now the brain doesn't know what to do with all> of it's pent up energy?? I had been telling him that> although we are very pleased with Katera's seizure> control, she seems MUCH more irritable..... lots of> crabby, cranky days and lots of finger chewing and> other "irritablility" type things. (She is very> delayed and not able to tell us how she's feeling in> any other way). I was surprized to hear he thought> this was common in kids with good seizure control.> Anyone else been told this by their doctors? She> definitely has sensory intregration issues but it's> a lot worse in the past couple of months.> > We are also being sent in to the hospital in the> morning for a renal ultrasound, urine and blood> draws..... Katera has had two episodes in the past> two months of extreme crying/screaming (the worst> I've ever seen in a kid) that has had a very sudden> onset and lasted several hours without any reason> that we can figure out. He just wants to rule out> stones. She is on such a low ratio (2.65:1) that he> thinks it's unlikely but you never know.> > We were pleased to find out that she had grown> about 5 cms in height in the past year and as an> added bonus, she seems to have had an increase of> one cm in head circumference..... not bad for a kid> with microcephaly who hadn't had ANY head growth for> a full year and a half prior to starting the> diet..... we had given up measuring....too> depressing! > > Patti, mom to Katera, age 5 (partial ACC, micro,> global delays) Keto since 10-10-2000...... med free.> >

September 6, 2001

DeEtte:

They say if you work on something long enough it, your bound to figure it out. May-be we will figure out a way to get that pent up frustration of energy out someother way? In the mean-time, we must hide things long before they become obsessive about them, long before they wear out or get too small. We must get into the room before they strike their sister or brother. And we must keep our sence of humour and love them for the special ((stubborn)) little sweethearts they are.

Hugs

Diane

behaviors with seizure> control> > > Heard something interesting today from our neuro> at our (almost) annual Keto follow-up visit......> now, this is the "successful" Dr. S from Portland,> Oregon, with many, many happy Keto patients.......> he said that often, when they get seizures under> control (I don't know if he meant Keto kids or those> on meds, too) , they'll see irritability and various> crabby, acting out type behaviors, more "stimming",> etc. Almost as if the seizures had been a "release"> and now the brain doesn't know what to do with all> of it's pent up energy?? I had been telling him that> although we are very pleased with Katera's seizure> control, she seems MUCH more irritable..... lots of> crabby, cranky days and lots of finger chewing and> other "irritablility" type things. (She is very> delayed and not able to tell us how she's feeling in> any other way). I was surprized to hear he thought> this was common in kids with good seizure control.> Anyone else been told this by their doctors? She> definitely has sensory intregration issues but it's> a lot worse in the past couple of months.> > We are also being sent in to the hospital in the> morning for a renal ultrasound, urine and blood> draws..... Katera has had two episodes in the past> two months of extreme crying/screaming (the worst> I've ever seen in a kid) that has had a very sudden> onset and lasted several hours without any reason> that we can figure out. He just wants to rule out> stones. She is on such a low ratio (2.65:1) that he> thinks it's unlikely but you never know.> > We were pleased to find out that she had grown> about 5 cms in height in the past year and as an> added bonus, she seems to have had an increase of> one cm in head circumference..... not bad for a kid> with microcephaly who hadn't had ANY head growth for> a full year and a half prior to starting the> diet..... we had given up measuring....too> depressing! > > Patti, mom to Katera, age 5 (partial ACC, micro,> global delays) Keto since 10-10-2000...... med free.> >

September 6, 2001

Yup. . .I'd love to get in a Yoga for Kids class

to deal and cope. . .if I could only get her to sit

still, be quiet and follow directions! They are dear,

sweet, precious (frustrating) souls, aren't they? I

feel like I keep flipping back and forth between

issues. . . we're working on behavior problems and

I've virtually forgotten about seizures or we're

working on seizures and I've virtually forgotten about

behavior problems!--D

--- Diane Wall wrote:

> DeEtte:

>

> They say if you work on something long enough it,

> your bound to figure it out. May-be we will figure

> out a way to get that pent up frustration of energy

> out someother way? In the mean-time, we must hide

> things long before they become obsessive about them,

> long before they wear out or get too small. We must

> get into the room before they strike their sister or

> brother. And we must keep our sence of humour and

> love them for the special ((stubborn)) little

> sweethearts they are.

>

> Hugs

> Diane

> behaviors with seizure

> > control

> >

> > Heard something interesting today from our

> neuro

> > at our (almost) annual Keto follow-up

> visit......

> > now, this is the " successful " Dr. S from

> Portland,

> > Oregon, with many, many happy Keto

> patients.......

> > he said that often, when they get seizures under

> > control (I don't know if he meant Keto kids or

> those

> > on meds, too) , they'll see irritability and

> various

> > crabby, acting out type behaviors, more

> " stimming " ,

> > etc. Almost as if the seizures had been a

> " release "

> > and now the brain doesn't know what to do with

> all

> > of it's pent up energy?? I had been telling him

> that

> > although we are very pleased with Katera's

> seizure

> > control, she seems MUCH more irritable..... lots

> of

> > crabby, cranky days and lots of finger chewing

> and

> > other " irritablility " type things. (She is very

> > delayed and not able to tell us how she's

> feeling in

> > any other way). I was surprized to hear he

> thought

> > this was common in kids with good seizure

> control.

> > Anyone else been told this by their doctors? She

> > definitely has sensory intregration issues but

> it's

> > a lot worse in the past couple of months.

> >

> > We are also being sent in to the hospital in

> the

> > morning for a renal ultrasound, urine and blood

> > draws..... Katera has had two episodes in the

> past

> > two months of extreme crying/screaming (the

> worst

> > I've ever seen in a kid) that has had a very

> sudden

> > onset and lasted several hours without any

> reason

> > that we can figure out. He just wants to rule

> out

> > stones. She is on such a low ratio (2.65:1) that

> he

> > thinks it's unlikely but you never know.

> >

> > We were pleased to find out that she had grown

> > about 5 cms in height in the past year and as an

> > added bonus, she seems to have had an increase

> of

> > one cm in head circumference..... not bad for a

> kid

> > with microcephaly who hadn't had ANY head growth

> for

> > a full year and a half prior to starting the

> > diet..... we had given up measuring....too

> > depressing!

> >

> > Patti, mom to Katera, age 5 (partial ACC,

> micro,

> > global delays) Keto since 10-10-2000...... med

> free.

> >

September 6, 2001

Yup. . .I'd love to get in a Yoga for Kids class

to deal and cope. . .if I could only get her to sit

still, be quiet and follow directions! They are dear,

sweet, precious (frustrating) souls, aren't they? I

feel like I keep flipping back and forth between

issues. . . we're working on behavior problems and

I've virtually forgotten about seizures or we're

working on seizures and I've virtually forgotten about

behavior problems!--D

--- Diane Wall wrote:

> DeEtte:

>

> They say if you work on something long enough it,

> your bound to figure it out. May-be we will figure

> out a way to get that pent up frustration of energy

> out someother way? In the mean-time, we must hide

> things long before they become obsessive about them,

> long before they wear out or get too small. We must

> get into the room before they strike their sister or

> brother. And we must keep our sence of humour and

> love them for the special ((stubborn)) little

> sweethearts they are.

>

> Hugs

> Diane

> behaviors with seizure

> > control

> >

> > Heard something interesting today from our

> neuro

> > at our (almost) annual Keto follow-up

> visit......

> > now, this is the " successful " Dr. S from

> Portland,

> > Oregon, with many, many happy Keto

> patients.......

> > he said that often, when they get seizures under

> > control (I don't know if he meant Keto kids or

> those

> > on meds, too) , they'll see irritability and

> various

> > crabby, acting out type behaviors, more

> " stimming " ,

> > etc. Almost as if the seizures had been a

> " release "

> > and now the brain doesn't know what to do with

> all

> > of it's pent up energy?? I had been telling him

> that

> > although we are very pleased with Katera's

> seizure

> > control, she seems MUCH more irritable..... lots

> of

> > crabby, cranky days and lots of finger chewing

> and

> > other " irritablility " type things. (She is very

> > delayed and not able to tell us how she's

> feeling in

> > any other way). I was surprized to hear he

> thought

> > this was common in kids with good seizure

> control.

> > Anyone else been told this by their doctors? She

> > definitely has sensory intregration issues but

> it's

> > a lot worse in the past couple of months.

> >

> > We are also being sent in to the hospital in

> the

> > morning for a renal ultrasound, urine and blood

> > draws..... Katera has had two episodes in the

> past

> > two months of extreme crying/screaming (the

> worst

> > I've ever seen in a kid) that has had a very

> sudden

> > onset and lasted several hours without any

> reason

> > that we can figure out. He just wants to rule

> out

> > stones. She is on such a low ratio (2.65:1) that

> he

> > thinks it's unlikely but you never know.

> >

> > We were pleased to find out that she had grown

> > about 5 cms in height in the past year and as an

> > added bonus, she seems to have had an increase

> of

> > one cm in head circumference..... not bad for a

> kid

> > with microcephaly who hadn't had ANY head growth

> for

> > a full year and a half prior to starting the

> > diet..... we had given up measuring....too

> > depressing!

> >

> > Patti, mom to Katera, age 5 (partial ACC,

> micro,

> > global delays) Keto since 10-10-2000...... med

> free.

> >

September 6, 2001

Yup. . .I'd love to get in a Yoga for Kids class

to deal and cope. . .if I could only get her to sit

still, be quiet and follow directions! They are dear,

sweet, precious (frustrating) souls, aren't they? I

feel like I keep flipping back and forth between

issues. . . we're working on behavior problems and

I've virtually forgotten about seizures or we're

working on seizures and I've virtually forgotten about

behavior problems!--D

--- Diane Wall wrote:

> DeEtte:

>

> They say if you work on something long enough it,

> your bound to figure it out. May-be we will figure

> out a way to get that pent up frustration of energy

> out someother way? In the mean-time, we must hide

> things long before they become obsessive about them,

> long before they wear out or get too small. We must

> get into the room before they strike their sister or

> brother. And we must keep our sence of humour and

> love them for the special ((stubborn)) little

> sweethearts they are.

>

> Hugs

> Diane

> behaviors with seizure

> > control

> >

> > Heard something interesting today from our

> neuro

> > at our (almost) annual Keto follow-up

> visit......

> > now, this is the " successful " Dr. S from

> Portland,

> > Oregon, with many, many happy Keto

> patients.......

> > he said that often, when they get seizures under

> > control (I don't know if he meant Keto kids or

> those

> > on meds, too) , they'll see irritability and

> various

> > crabby, acting out type behaviors, more

> " stimming " ,

> > etc. Almost as if the seizures had been a

> " release "

> > and now the brain doesn't know what to do with

> all

> > of it's pent up energy?? I had been telling him

> that

> > although we are very pleased with Katera's

> seizure

> > control, she seems MUCH more irritable..... lots

> of

> > crabby, cranky days and lots of finger chewing

> and

> > other " irritablility " type things. (She is very

> > delayed and not able to tell us how she's

> feeling in

> > any other way). I was surprized to hear he

> thought

> > this was common in kids with good seizure

> control.

> > Anyone else been told this by their doctors? She

> > definitely has sensory intregration issues but

> it's

> > a lot worse in the past couple of months.

> >

> > We are also being sent in to the hospital in

> the

> > morning for a renal ultrasound, urine and blood

> > draws..... Katera has had two episodes in the

> past

> > two months of extreme crying/screaming (the

> worst

> > I've ever seen in a kid) that has had a very

> sudden

> > onset and lasted several hours without any

> reason

> > that we can figure out. He just wants to rule

> out

> > stones. She is on such a low ratio (2.65:1) that

> he

> > thinks it's unlikely but you never know.

> >

> > We were pleased to find out that she had grown

> > about 5 cms in height in the past year and as an

> > added bonus, she seems to have had an increase

> of

> > one cm in head circumference..... not bad for a

> kid

> > with microcephaly who hadn't had ANY head growth

> for

> > a full year and a half prior to starting the

> > diet..... we had given up measuring....too

> > depressing!

> >

> > Patti, mom to Katera, age 5 (partial ACC,

> micro,

> > global delays) Keto since 10-10-2000...... med

> free.

> >

September 6, 2001

Yeah, I was surprized to hear this also, ...... but I think the other report you got would probably also be true..... I mean, for many, getting the constant interruption and trauma of seizures out of their life would HAVE to be a plus in letting them be more awake, aware, able to enjoy life, etc..... and then getting them off meds would be an obvious improvement. But, I think I see the thing Dr. S was getting at today...... and I agree that, like DeEtte, I've seen Katera (in the past) seem so much calmer and "with it" in some ways right after a big seizure.... just from the general sensory type "stuff" that has always been part of Katera's makeup.... it has always come and gone. I also have a friend who brings her son, i, to a doc back east that, when i would be just really cranky, crabby and "stuck" in a rutt so to speak, with developmental progress, the doc would say "Hmmm, I think i needs a seizure"...... ! Weird, huh? I mean, to think anyone could "need" a seizure.... but I guess it is a coping mechanism of sorts for the brain when it doesn't otherwise know what to do with excess electrical energy and can't channel it appropriately. Anyway, my long-winded way of saying that I think BOTH points of view are probably true.... and it's not really a point of contention. Just interesting from a different perspective. I wonder if we could brainstorm (no pun intended) a way that people with epilepsy could get rid of the pent up electrical charge some other way..... maybe that's why cranio-sacral therapy seems to help some.... sort of drawing off excess energy. ??? Sorry.... it's late, I'm rambling...... gee, what I don't know could certainly fill a huge book!

Patti

Re: behaviors with seizure control

I found what Dr. S. said to be interesting, since I had received a report today from another dietician in Portland. This report was a study done on the Keto diet that showed improved behavior and attitude for kids on the diet!

--'s mom

September 6, 2001

Yeah, I was surprized to hear this also, ...... but I think the other report you got would probably also be true..... I mean, for many, getting the constant interruption and trauma of seizures out of their life would HAVE to be a plus in letting them be more awake, aware, able to enjoy life, etc..... and then getting them off meds would be an obvious improvement. But, I think I see the thing Dr. S was getting at today...... and I agree that, like DeEtte, I've seen Katera (in the past) seem so much calmer and "with it" in some ways right after a big seizure.... just from the general sensory type "stuff" that has always been part of Katera's makeup.... it has always come and gone. I also have a friend who brings her son, i, to a doc back east that, when i would be just really cranky, crabby and "stuck" in a rutt so to speak, with developmental progress, the doc would say "Hmmm, I think i needs a seizure"...... ! Weird, huh? I mean, to think anyone could "need" a seizure.... but I guess it is a coping mechanism of sorts for the brain when it doesn't otherwise know what to do with excess electrical energy and can't channel it appropriately. Anyway, my long-winded way of saying that I think BOTH points of view are probably true.... and it's not really a point of contention. Just interesting from a different perspective. I wonder if we could brainstorm (no pun intended) a way that people with epilepsy could get rid of the pent up electrical charge some other way..... maybe that's why cranio-sacral therapy seems to help some.... sort of drawing off excess energy. ??? Sorry.... it's late, I'm rambling...... gee, what I don't know could certainly fill a huge book!

Patti

Re: behaviors with seizure control

I found what Dr. S. said to be interesting, since I had received a report today from another dietician in Portland. This report was a study done on the Keto diet that showed improved behavior and attitude for kids on the diet!

--'s mom

September 6, 2001

Yeah, I was surprized to hear this also, ...... but I think the other report you got would probably also be true..... I mean, for many, getting the constant interruption and trauma of seizures out of their life would HAVE to be a plus in letting them be more awake, aware, able to enjoy life, etc..... and then getting them off meds would be an obvious improvement. But, I think I see the thing Dr. S was getting at today...... and I agree that, like DeEtte, I've seen Katera (in the past) seem so much calmer and "with it" in some ways right after a big seizure.... just from the general sensory type "stuff" that has always been part of Katera's makeup.... it has always come and gone. I also have a friend who brings her son, i, to a doc back east that, when i would be just really cranky, crabby and "stuck" in a rutt so to speak, with developmental progress, the doc would say "Hmmm, I think i needs a seizure"...... ! Weird, huh? I mean, to think anyone could "need" a seizure.... but I guess it is a coping mechanism of sorts for the brain when it doesn't otherwise know what to do with excess electrical energy and can't channel it appropriately. Anyway, my long-winded way of saying that I think BOTH points of view are probably true.... and it's not really a point of contention. Just interesting from a different perspective. I wonder if we could brainstorm (no pun intended) a way that people with epilepsy could get rid of the pent up electrical charge some other way..... maybe that's why cranio-sacral therapy seems to help some.... sort of drawing off excess energy. ??? Sorry.... it's late, I'm rambling...... gee, what I don't know could certainly fill a huge book!

Patti

Re: behaviors with seizure control

I found what Dr. S. said to be interesting, since I had received a report today from another dietician in Portland. This report was a study done on the Keto diet that showed improved behavior and attitude for kids on the diet!

--'s mom

September 7, 2001

When seizure control is equated with the diet and meds being removed, a

lot of us have blamed it on the med removal - a good thing, of course,

but the world becomes a whole new world to the child and there can be a

lot of sensory defensiveness isues. If meds weren't removed, I don't know........

Diane Wall wrote:

Patti: Sounds

like.........Josh-the irritability, the obsessive compulsive problem with

an old pair of running shoes-I have had to carry him to school because

he wouldn't walk in his new shoes-the old ones are full of holes and too

small. May-be he is on to something-may-be he can figure out a way

to solve this problem . Please let me know. I'm

so happy that things are going well for you-I hope the blood work turns

out well too. HugsDiane

behaviors with

seizure control

Heard something interesting

today from our neuro at our (almost) annual Keto follow-up visit......

now, this is the "successful" Dr. S from Portland, Oregon, with many, many

happy Keto patients....... he said that often, when they get seizures under

control (I don't know if he meant Keto kids or those on meds, too) , they'll

see irritability and various crabby, acting out type behaviors, more "stimming",

etc. Almost as if the seizures had been a "release" and now the brain doesn't

know what to do with all of it's pent up energy?? I had been telling him

that although we are very pleased with Katera's seizure control, she seems

MUCH more irritable..... lots of crabby, cranky days and lots of finger

chewing and other "irritablility" type things. (She is very delayed and

not able to tell us how she's feeling in any other way). I was surprized

to hear he thought this was common in kids with good seizure control. Anyone

else been told this by their doctors? She definitely has sensory intregration

issues but it's a lot worse in the past couple of months. We

are also being sent in to the hospital in the morning for a renal ultrasound,

urine and blood draws..... Katera has had two episodes in the past two

months of extreme crying/screaming (the worst I've ever seen in a kid)

that has had a very sudden onset and lasted several hours without any reason

that we can figure out. He just wants to rule out stones. She is on such

a low ratio (2.65:1) that he thinks it's unlikely but you never know. We

were pleased to find out that she had grown about 5 cms in height in the

past year and as an added bonus, she seems to have had an increase of one

cm in head circumference..... not bad for a kid with microcephaly who hadn't

had ANY head growth for a full year and a half prior to starting the diet.....

we had given up measuring....too depressing! Patti,

mom to Katera, age 5 (partial ACC, micro, global delays) Keto since 10-10-2000......

med free.

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

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Service.

September 7, 2001

Patti...

Let me just start by saying.....YIPPEEEEE YAHOOOO WOOOHOOOOO!!! A

whole cm??? I am so pleased to hear this. Head growth is something

to celebrate! Hugs to Katera!

The behaviors...Sev is very happy right now and his control isn't all

that great...better than it had been, but not at all where we'd like

it. Looking back, some of his better control times have been the

times he's been a little crankier...interesting thought about the

extra energy. Sev is so miserable when he's not happy...there's no

middle ground with him. Maybe these little stares we're having right

now aren't that terrible.... Nan

September 7, 2001

Patti, Diane and all:

I see the same thing with Rose although I attribute it more to being more

aware and therefore, having to deal with frustration in the " real world "

rather than the hazy one she's been used to. Actually, a couple of my boys

were worse about being overly attached to particular socks & shoes than she

is! I think the dilantin decreased sensation for Rose and some of the

stimming behaviors may have been to order all this input she hadn't

experienced before. My 11-yr old repetitively cracked all his knuckles two

yrs ago. I felt it was more than habit--stress & he was calming himself.

We began homeschooling him & it disappeared.

I also think the energy piece is true, but I'm not sure I think it's

excessive electrical energy. Rose has gross motor delay & so therefore

can't run & jump like other kiddos her age. She seeks the sensory input

herself. Right now her thing is to free fall into things/people--the couch,

me, her brothers and sister. I'll be standing in the kitchen and suddenly,

BUMP--Rose is crashing into my leg (I wondered where the bruises were coming

from!). I have to put her on her PT ball and bounce her for a while I

guess--that helps too. When my boys get irritable, I send them outside to

rough house. Rose likes to run around upstairs from bedroom to bedroom with

the boys rolling over the beds, which seems to help her.

I don't know if this is what you all are seeing. Just my .02. The doctor's

comments are interesting though.

mom to Rose ketokid 8/00

September 7, 2001

>Weird, huh? I mean, to think anyone could " need " a seizure.... but I

>guess it is a coping mechanism of sorts for the brain when it

>doesn't otherwise know what to do with excess electrical energy and

>can't channel it appropriately.

PATTI, BRENDA, DE'ETTE & OTHERS ON THIS THREAD:

The " weird " idea you have proposed has some support in the medical

literature, and even in contemporary treatments. Glen Doman's IAHP,

one of the most successful treatment venues for severely brain-

damaged children, has an established unorthodox view of seizures in

general, their origin in particular.

On their website (http://www.iahp.org), you can read a very good

article written by the late B. LeWinn, M.D. & former Medical

Director of the IAHP, titled, " A Bill Of Particulars On Seizures And

On Discontinuing Anti-convulsant Drugs " . Much of the " outside-the-

box " thinking reflected in that article is based on an article

appearing in the American Journal of Psychiatry, Volume 99, #2,

September, 1942, by Temple Fay, M.D. & Neurosurgeon, who was the

first Medical Director of the IAHP, and perhaps the strongest medical

influence on young Glen Doman.

The following quoted material includes most of the introductory

commentary, plus other comments interspersed throughout, as composed

by Mr. Doman, Dr. LeWinn, and Dr. Roselise Wilkinson, as well as

passages from Dr. Fay's original 1942 article:

INTRODUCTORY COMMENTARY: " In the welter of technology which today is

increasingly the basis for the study of human behavior and human

ills, the process of simple observation has been all but lost. And

yet, until recent decadesthe growth of our knowledge of ourselves and

of the world around us has been almost entirely by means of what the

late Odell Shepherd, Professor of English at Trinity College in

Hartford, called, 'the harvest of a quiet eye'. Simple observation

has been the basis for precepts and conclusions made by philosophers,

mathematicians, astronomers, physicists, and physicians who have

profoundly influenced our lives.

This morning we shall present to you a superb example of the product

of a keen eye, an attentive ear, and a sensitive hand, that led a

remarkably receptive mind to exercise its curiousity, imagination,

and understanding, and to express the meaning of such simple

observation. We shall present, with comments, one of Temple Fay's

classic papers, 'The Other Side Of A Fit'. We are certain that in

the 35 years [...now 59 years...] since it was first published this

will be the first time any group of people will have given this

example of Dr. Fay's perception and wisdom the attention it deserves. "

DR. FAY: " ...there are many who see no good in convulsive seizures,

and view the entire episode as an unnecessary and horrible phenomenon.

If one were to view a major convulsive seizure with the same

dispassionate tolerance as one might a severe sneezing attack or

period of vomiting, the ordeal, unpleasant as it might appear, would

hardly be ascribed to 'evil spirits'. [...nor as an unnecessary and

horrible phenomenon...] These reactions of defense are recognized as

normal mechanisms of protection against irritants to the nose or to

the stomach. "

TRANSITIONAL COMMENTARY: " Proposing that same reason, tolerance, and

understanding be similarly exercised in the matter of seizures... "

DR. FAY: " If we are to look upon the other side of a fit to see its

possible benefits, we must pose two fundmental questions:

(1) Why has it been necessary for 'nature' to evolve such a violent

mechanism?

(2) What useful purpose could it have served? "

TRANSITIONAL COMMENTARY: " For Fay the behavior of people in seizures

has quite a different meaning from that derived by his

colleagues. ...Fay appreciated the fact that the understanding of

human behavior and human ills can be better accomplished by taking

into account man's phylogenetic and developmental history. "

DR. FAY: " ...Since the 'convulsive mechanism' may now be demonstrated

to be present in man and throughout the animal world by means of

electric shock and metrazol, it can no longer be considered as

pathological. As a latent and retained 'reaction of defense', it may

be potentially present throughout life without the need for

expression.

....The seizure, per se, if a defense reflex, should be reviewed in

the light of the early neurological history of the vertebrates. "

....The simple pattern of a convulsive seizure includes the turning of

the head and eyes; the twisting of the trunk or extension of the

back; and the repetitive flexor-extensor movements of the prime

muscles of the extremities. These are all characteristic of the

amphibian level of motor development.

Perhaps the greatest event in the history of evolution was the

emergence of the land forms from the saline surroundings of the

oceans.

....Where tissues had freely obtained water, oxygen, salts, and

electrolytes from the surrounding ocean, they were now required to

seek oxygen from the air, salts from deposits on the land, and water

from distant pools. ...When dangerous deficiencies arose on the

land, protection and replenishment were assured by the prompt return

to the ocean. Those forms of life that learned to emerge and

then 'flip' back again evidently survived to try another time.

....The countless experiments over millions of years, as well as

myriads of forms which failed to adjust themselves, are unknown to us

today. Gradually, however, there seems to have evolved a 'defense'

pattern in the nervous system which could be called into action when

the vertebrate encountered improper tissue concentrations of water or

oxygen, or alterations from the established physiochemistry of the

oceans.

....The convulsive pattern of movements in man may signify an attempt

at readjustment and 'defense' along the old and established rules

when the organism is faced with profound physiological changes in

electrolytes and oxygen at the brain level.

It is not surprising, therefore, to find in man a primitive basic

reflex, as protective in its way as the vomiting reflex, which

admittedly has its purpose. If its purpose be the reestablishment of

normal physiology, in terms of oxygen, salts, electrolytes, and

metabolism, then it is obvious that the search for specific pathology

will be fruitless and the concept of 'disease' untenable. That there

are many types of pathological threats to the brain capable of

producing and calling forth this primitive response. merely indicates

a basic response to a serious need, no matter what the cause.

'The Other Side Of A Fit', in my opinion, is that the convulsive

seizure represents a normal 'defense reflex' of simple pattern,

evolved for the purpose of protecting against alterations in the

basic formula of water, oxygen, and certain salts... ...once

standardized and easily obtained in the primitive environment of the

ocean, is more reasonable to me than the idea of 'disease' or some

mysterious 'alpha substance' spreading throughout the brain surface.

Those who do not choose to associate our superior human state of

today with the evolutionary past, the most significant period of

which was concerned with getting out of the water and solving the

problems of air and land, should glance a moment at the present. The

most significant event in the [contemporary] human experience is when

he 'emerges' from the saline, watery protection of the amniotic sac

at birth, into the world of air and solid surfaces. This moment of

transition is a critical one -- condensed into a few minutes, it

represents the supreme achievement of Nature, requiring untold

millions of years in the evolutionary struggle, to bring forth a land

surviving type.

In view of the hypothesis presented above, that the convulsion may

have as its purpose the restoration of fundamental physiological

relationships, whether disturbed by deficient environment, inadequate

circulation, or local pathology, and thus be considered as a 'defense

reflex', it may not be out of place to ask the questions:

(1) What is the relative frequency of convulsive seizures in aquatic

vertebrates, as compared with the air-breathing land types?

(2) What is the relative frequency of convulsive seizures in the

embryo in-utero, during the last six months of its free-swimming

state, as compared with the first six months after birth as as air-

breathing land type?

The answers, revealing as they might be, at present at least, is that

no one actually knows.

....the day has arrived when we must throw out the concept

of 'demons', 'disease', and 'disgrace', and abandon the fruitless

search for a specific pathology. We must give up the fixed idea that

the seizure is a 'base', 'horrible', 'undesirable' manifestation " ,

simply because we do not like to see it, do not understand it, and

often cannot control it.

....the 'other side' reveals an endless stream of evolutionary,

symptomatic, and physiological evidence to support the idea that a

convulsive seizure is a primitive, integrated, 'reaction of defense'

for a purpose, and as an emergency release mechanism, reverts back to

a primitive motor pattern.

To seek the reasons which require the playing of such an ace card, in

the effort of defense of the brain, would seem a more intelligent

approach to therapy thant he practice of medicinal 'black-outs' to

relieve our offended senses. "

COMMENTARY: " Here Dr. Fay anticipated by thirty years the

condemnation of the use of anticonvulsants by this body [iAHP] in

1971. Unfortunately, in spite of the truth and clarity of these

statements, Fay's words have otherwise been largely ignored. "

CLOSING COMMENTARY: " It has been aptly said that every innovator

begins as a minority of one. Innovation in ideas is often regarded

as dissent... [or] heresy. Let it be noted that Temple Fay non

longer stands as a minority of one, nor has he for nearly three

decades. Although we are still a minority in this, as well as other

matters concerning human potential, we are a growing minority. "

Tim

September 7, 2001