Re: Andy/-seizure or Vagus vasal?

[Guest guest]

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out after a fall. When she was a toddler, she never

fell, was extremely careful. As she has gotten better, she now takes

many more chances, plays as rough as other kids, and gets hurt. The

first time it happened, she was taken the ER, and the ped who both

said it was not a seizure, but a Vagus Vasal reaction to pain that

some people have.

That is, fainting.

> Today after an hour long hot shower and blow drying her hair,

without the pain, she passed out again as she was brushing her teeth.

She seemed stiff initially, but relaxed when I picked her up. I was

standing right beside her. This episode did seem different than the

first three, one of which I personally witnessed. Previously, she

seemed dazed, but this time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had

hit her head, hard on my tile floor. By the time I got her to the

couch, she was talking to me saying that she felt wobbly. It took her

about 20 minutes to fully recover, she was weak, but she seems none

the worse for wear, physically or cognitively speaking.

Was her emotion inappropriate, or was she very fearful, or were her

words slurred immediately on regaining consciousness? This often goes

with seizures.

> She is going to go back to the ped, where I assume they will refer

her to a neuro for an EEG, but my question is how do you tell the

difference between a Vagus Vasal reaction and a seizure?

EEG is abnormal in those with seizures most of the time.

Also ask her to talk about before, during and after.

" Vasovagal " is just fainting due to inadequate blood flow to the brain.

>

> If it is true that there is usually some emotional phenoma

surrounding a seizure, would it count that she was mildly fussing

about two minutes prior to her fainting about not getting back to some

art project she and I were working on?

Depends on whether that is unusual for her or not.

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the administration of one I should know about?

No, just let the neuro do it.

>

> Also, I have read where you have said a lot of neuro's don't read

them properly, so how do we make sure the EEG is read properly?

Make the neuro show it to you and explain it to you. Make him show

you a normal ones and one with different kinds of seizures. Make him

talk about ones that don't show seizures but aren't normal.

> Are we or the neuro looking for anything in particular?

1. Seizures. Figure out where and what kind.

2. nonseizure like abnormalities.

>

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of this about a month ago and you said get this

checked out if there is any " spasticity " . Does her stiffness when she

fainted count as spasticity? She had the same temporary stiffness

with what the ER and the ped called the Vagus vasal reaction.

I don't know if this is relevant or not but I would watch it like a

hawk under the circumstances, and also ask the neuro specifically

about how high calcium could be involved in this and what else would

go along with that.

You can try the pede too.

> Thanks for your attention,

>

>

>

>

>

[Guest guest]

>>first time it happened, she was taken the ER, and the ped who both

said it was not a seizure, but a Vagus Vasal reaction to pain that

some people have.

I passed out once when I was a young child, because of a particularly

painful episode that happened to me.

> Today after an hour long hot shower and blow drying her hair,

without the pain, she passed out again as she was brushing her teeth.

If I was in a hot shower for an hour, I would have probably passed out

also.

>>By the time I got her to the couch, she was talking to me saying

that she felt wobbly. It took her about 20 minutes to fully recover,

she was weak, but she seems none the worse for wear, physically or

cognitively speaking.

This is how I feel if I am in a hot shower or bath for too long.

> Also, her blood calcium was above ref range, 11.4, high ref range 10.2.

I had high calcium also, it caused kidney stones a few years ago for

me. You might want to check out other nutrients that either increase,

or reduce, calcium absorption

http://www.kroger.com/hn/Supp/Calcium.htm

I used IP6 to reduce my calcium levels.

Dana

[Guest guest]

In a message dated 08/03/2006 01:28:46 GMT Standard Time,

Ladyshrink111@... writes:

So, all you parents out there, quit " letting " your kids be autistic.

>>>Ok I will do that frst thing tomorrow then. Whats happens next? ROFL

Mandi x

[Guest guest]

I would ask the pede to show you charts with high calcium levels - I

do not believe he sees them routinely.

If he really does it is probably a problem in the laboratory that

really doesn't require pincushioning your poor granddaughter.

If the doc made this claim up to get them to go along with what he

said, this might be a tool to jerk your daughter's and son in law's

chains enough to rattle some sense into their brains and get them to

find a real doctor instead.

I think what you are doing is fine.

Andy . . . . . . .

>

> Andy:

>

> Related to the fainting spell of last week and the high blood

calcium level, we took our girl to the ped yesterday.

>

> The ped pronounced her fainting spell a vagus vasal reaction sans

seizure related to her prolonged shower. He did order an EKG, but

doesn't expect to find anything and said that Vagus vasal reactions

are quite common and feels comfortable that these occur without

seizure activity.

>

> Although my dd brought the high blood calcium to his attention, he

was not concerned, said he sees high calcium blood levels at that

level frequently and said he would keep an eye on it.

>

> As he recommended no further blood testing, I guess he is just going

to look at her and tell when her blood calcium gets higher, geesh!

>

> So, a few questions about the high calcium level in her blood. I

carefully counted her Vitamin D level and counting food sources and

supplementation it is below 1000IU daily.

>

> Why specifically are we watching this? Is this related to her

parathyroid? This is the third ped we are currently exhausting. Would

have been easier and less time consuming to go to med school myself

than to get answers/help from these people.

>

> She takes magnesium with every meal. Her cal/mag ratio is approx

1:2, with calcium being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

>

> Previously we had supplemented calcium, on which she does well, at

about 500 mgs a day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high

blood level of calcium or should a person's parathyroid be able to

regulate the amount of calcium that gets to the blood regardless of

how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out after a fall. When she was a toddler, she never

fell, was extremely careful. As she has gotten better, she now takes

many more chances, plays as rough as other kids, and gets hurt. The

first time it happened, she was taken the ER, and the ped who both

said it was not a seizure, but a Vagus Vasal reaction to pain that

some people have.

>

> Today after an hour long hot shower and blow drying her hair,

without the pain, she passed out again as she was brushing her teeth.

She seemed stiff initially, but relaxed when I picked her up. I was

standing right beside her. This episode did seem different than the

first three, one of which I personally witnessed. Previously, she

seemed dazed, but this time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she

had hit her head, hard on my tile floor. By the time I got her to the

couch, she was talking to me saying that she felt wobbly. It took her

about 20 minutes to fully recover, she was weak, but she seems none

the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer

her to a neuro for an EEG, but my question is how do you tell the

difference between a Vagus Vasal reaction and a seizure?

>

> If it is true that there is usually some emotional phenoma

surrounding a seizure, would it count that she was mildly fussing

about two minutes prior to her fainting about not getting back to some

art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the administration of one I should know about?

>

> Also, I have read where you have said a lot of neuro's don't read

them properly, so how do we make sure the EEG is read properly?

>

> Are we or the neuro looking for anything in particular?

>

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of this about a month ago and you said get this

checked out if there is any " spasticity " . Does her stiffness when she

fainted count as spasticity? She had the same temporary stiffness

with what the ER and the ped called the Vagus vasal reaction.

>

> Thanks for your attention,

>

>

>

>

>

[Guest guest]

Thanks, Andy, but a real doc in Ohio is an oxymoron. All the good ones left for

warmer climates and the rest are busy planning a mass exodus due to malpractice

issues.

I was talking with the psychologist who took over my old job of district school

psychologist. We are working with an 8 year old Asperger student.

This man actually told me that Autism happens because parents " allow " the child

to be autistic or display autistic behaviors. Know I know this guy, he's not

stupid, don't think he is on drugs, but he was dead serious!

I was so angry I got very uncharacteristically speechless! But that is an

example of the finest and brightest Ohio has to offer. I would not be here

either save for my dgd.

So, all you parents out there, quit " letting " your kids be autistic.

[ ] Re: Andy/-seizure or Vagus vasal?

I would ask the pede to show you charts with high calcium levels - I

do not believe he sees them routinely.

If he really does it is probably a problem in the laboratory that

really doesn't require pincushioning your poor granddaughter.

If the doc made this claim up to get them to go along with what he

said, this might be a tool to jerk your daughter's and son in law's

chains enough to rattle some sense into their brains and get them to

find a real doctor instead.

I think what you are doing is fine.

Andy . . . . . . .

>

> Andy:

>

> Related to the fainting spell of last week and the high blood

calcium level, we took our girl to the ped yesterday.

>

> The ped pronounced her fainting spell a vagus vasal reaction sans

seizure related to her prolonged shower. He did order an EKG, but

doesn't expect to find anything and said that Vagus vasal reactions

are quite common and feels comfortable that these occur without

seizure activity.

>

> Although my dd brought the high blood calcium to his attention, he

was not concerned, said he sees high calcium blood levels at that

level frequently and said he would keep an eye on it.

>

> As he recommended no further blood testing, I guess he is just going

to look at her and tell when her blood calcium gets higher, geesh!

>

> So, a few questions about the high calcium level in her blood. I

carefully counted her Vitamin D level and counting food sources and

supplementation it is below 1000IU daily.

>

> Why specifically are we watching this? Is this related to her

parathyroid? This is the third ped we are currently exhausting. Would

have been easier and less time consuming to go to med school myself

than to get answers/help from these people.

>

> She takes magnesium with every meal. Her cal/mag ratio is approx

1:2, with calcium being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

>

> Previously we had supplemented calcium, on which she does well, at

about 500 mgs a day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high

blood level of calcium or should a person's parathyroid be able to

regulate the amount of calcium that gets to the blood regardless of

how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out after a fall. When she was a toddler, she never

fell, was extremely careful. As she has gotten better, she now takes

many more chances, plays as rough as other kids, and gets hurt. The

first time it happened, she was taken the ER, and the ped who both

said it was not a seizure, but a Vagus Vasal reaction to pain that

some people have.

>

> Today after an hour long hot shower and blow drying her hair,

without the pain, she passed out again as she was brushing her teeth.

She seemed stiff initially, but relaxed when I picked her up. I was

standing right beside her. This episode did seem different than the

first three, one of which I personally witnessed. Previously, she

seemed dazed, but this time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she

had hit her head, hard on my tile floor. By the time I got her to the

couch, she was talking to me saying that she felt wobbly. It took her

about 20 minutes to fully recover, she was weak, but she seems none

the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer

her to a neuro for an EEG, but my question is how do you tell the

difference between a Vagus Vasal reaction and a seizure?

>

> If it is true that there is usually some emotional phenoma

surrounding a seizure, would it count that she was mildly fussing

about two minutes prior to her fainting about not getting back to some

art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the administration of one I should know about?

>

> Also, I have read where you have said a lot of neuro's don't read

them properly, so how do we make sure the EEG is read properly?

>

> Are we or the neuro looking for anything in particular?

>

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of this about a month ago and you said get this

checked out if there is any " spasticity " . Does her stiffness when she

fainted count as spasticity? She had the same temporary stiffness

with what the ER and the ped called the Vagus vasal reaction.

>

> Thanks for your attention,

>

>

>

>

>

[Guest guest]

LOL, guess it's all over then, you go on to your regular life and live happily

ever after.

Btw, I do plan on getting back with this gentlemen and having a looong chat with

him

Re: [ ] Re: Andy/-seizure or Vagus vasal?

In a message dated 08/03/2006 01:28:46 GMT Standard Time,

Ladyshrink111@... writes:

So, all you parents out there, quit " letting " your kids be autistic.

>>>Ok I will do that frst thing tomorrow then. Whats happens next? ROFL

Mandi x

[Guest guest]

, I'll get right on it!! Note to self.... ;-)

René

(Actually, I really did think it was ALL MY FAULT, before we realized

that my son actually had a diagnosable condition. Bettelheim et al.

would have had a field day with me if only this had happened 40 years

ago. I shudder to think.)

>

> This man actually told me that Autism happens because

parents " allow " the child to be autistic or display autistic

behaviors. Know I know this guy, he's not stupid, don't think he is

on drugs, but he was dead serious!

>

>

> So, all you parents out there, quit " letting " your kids be autistic.

>

>

[Guest guest]

I have seen many heartless, rejecting mothers with the most NT kids you can

find. It certainly is not related.

[ ] Re: Andy/-seizure or Vagus vasal?

, I'll get right on it!! Note to self.... ;-)

René

(Actually, I really did think it was ALL MY FAULT, before we realized

that my son actually had a diagnosable condition. Bettelheim et al.

would have had a field day with me if only this had happened 40 years

ago. I shudder to think.)

>

> This man actually told me that Autism happens because

parents " allow " the child to be autistic or display autistic

behaviors. Know I know this guy, he's not stupid, don't think he is

on drugs, but he was dead serious!

>

>

> So, all you parents out there, quit " letting " your kids be autistic.

>

>

=======================================================

[Guest guest]

> LOL, guess it's all over then, you go on to your regular life and live happily

ever after.

>

> Btw, I do plan on getting back with this gentlemen and having a looong chat

with him

, no matter how smart you say he is, I would guess that in this case you

will probably

waste your time. I mean somebody who can think (and SAY!) such things... TODAY!

I am guessing

that it would take a lot more than talking to convince them. Maybe, like it

happened to

others, he needs to see it happening in his family, to realize that he is wrong.

I hope not,

but... you know that today chances are this could happen to anybody.

Valentina

[Guest guest]

>

> Andy:

>

> Related to the fainting spell of last week and the high blood calcium level,

we took our

girl to the ped yesterday.

>

> The ped pronounced her fainting spell a vagus vasal reaction sans seizure

related to her

prolonged shower. He did order an EKG, but doesn't expect to find anything and

said that

Vagus vasal reactions are quite common and feels comfortable that these occur

without

seizure activity.

Well, if it is really a vagovasal reaction, it is not a seizure.

It can be hard to tell if someone is having a seizure or not.

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what this guy

tells you.

The received wisdom in MD medicine is that a first seizure is often (more than

half the

time) just a random event that will not occur again, so it isn't appropriate to

consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the various

kinds of

seizures and associated behaviors so you know what to look for if this is a

seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was not

concerned,

said he sees high calcium blood levels at that level frequently and said he

would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes it.

> As he recommended no further blood testing, I guess he is just going to look

at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware of if it

is

happening.

> So, a few questions about the high calcium level in her blood. I carefully

counted her

Vitamin D level and counting food sources and supplementation it is below 1000IU

daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her parathyroid?

This is the third

ped we are currently exhausting. Would have been easier and less time consuming

to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2, with

calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at about 500

mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high blood level

of

calcium or should a person's parathyroid be able to regulate the amount of

calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl (5.1)

passed out

after a fall. When she was a toddler, she never fell, was extremely careful.

As she has

gotten better, she now takes many more chances, plays as rough as other kids,

and gets

hurt. The first time it happened, she was taken the ER, and the ped who both

said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without the

pain, she

passed out again as she was brushing her teeth. She seemed stiff initially, but

relaxed

when I picked her up. I was standing right beside her. This episode did seem

different than

the first three, one of which I personally witnessed. Previously, she seemed

dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had hit her

head, hard

on my tile floor. By the time I got her to the couch, she was talking to me

saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was weak, but

she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her to a

neuro for an

EEG, but my question is how do you tell the difference between a Vagus Vasal

reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding a

seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to her

fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any parameters

about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so that

she is

compliant and doesn't pull the wires off or anything like that. It doesn't hurt

and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or neuro

tells you

" everything is fine " if they didn't see an actual seizure but did see other

abnormalities that

are discussed in the report. The thing to do is get a copy of the letter report

interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range 10.2. We

spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped called the

Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a little

child and let

big daddy take care of you - which is what he was taught was the deal in med

school.

Don't torment him but do insist on getting things explained and knowing what the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which plays in

to their

getting bad care out of bad doctors. What happens in the doctor's office isn't

going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get information! If

the neuro

has to give it to you with a dollop of paternalism and prejudice, let him do

that. You're

not there to be his psychiatrist, those are his problems and don't let them be

yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some with

seizures, some

without, illuminates his reading of textbooks in a way you can never do by just

doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy

[Guest guest]

Are you supplementing Vitamin K2? (It must be K2 form, since K1 doesn't

work the same way.) K2 is important in terms of calcium distribution.

Check out the " VitaminK " group at for more detailed information.

-Lana

> So, a few questions about the high calcium level in her blood. I

> carefully counted her

> Vitamin D level and counting food sources and supplementation it is below

> 1000IU daily.

>

> So that isn't doing it.

>

[Guest guest]

----- Original Message -----

From: andrewhallcutler

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what this

guy tells you.

==>Related to this fainting incident, the ped did order the EEG and my dd

insisted on a meeting with the neuro. She told his office ahead of time she

wanted other examples of normal EEG's and other not so normal ones. The neuro

was good, patient and explained things satisfactorily. He felt she did not have

seizure activity and explained that Vagus Vasal reactions are not that uncommon

and usually outgrown by the end of adolescence.

She has had a few more vagus vasal reactions always in relation to severe

pain.

We have had her parathyroid checked and it was normal. We got her D levels

about three weeks ago and they are as follows.

Vit D 1-25 Dihyd 55 ref range 15-75

Vit D 25 Hydroxy 63H ref range 20-57

Osteocalcin 79 no ref range

Serum Calcium 9.9 8.6-10.5 rr

Just a few questions; I'm not sure what the last value means. Should she get

any Vitamin D at all? She is off raw milk and drinks D fortified milk.

Thanks,

The received wisdom in MD medicine is that a first seizure is often (more than

half the

time) just a random event that will not occur again, so it isn't appropriate

to consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the various

kinds of

seizures and associated behaviors so you know what to look for if this is a

seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was not

concerned,

said he sees high calcium blood levels at that level frequently and said he

would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes it.

> As he recommended no further blood testing, I guess he is just going to look

at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware of if

it is

happening.

> So, a few questions about the high calcium level in her blood. I carefully

counted her

Vitamin D level and counting food sources and supplementation it is below

1000IU daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her parathyroid?

This is the third

ped we are currently exhausting. Would have been easier and less time

consuming to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2, with

calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at about 500

mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high blood

level of

calcium or should a person's parathyroid be able to regulate the amount of

calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl (5.1)

passed out

after a fall. When she was a toddler, she never fell, was extremely careful.

As she has

gotten better, she now takes many more chances, plays as rough as other kids,

and gets

hurt. The first time it happened, she was taken the ER, and the ped who both

said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without the

pain, she

passed out again as she was brushing her teeth. She seemed stiff initially,

but relaxed

when I picked her up. I was standing right beside her. This episode did seem

different than

the first three, one of which I personally witnessed. Previously, she seemed

dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had hit her

head, hard

on my tile floor. By the time I got her to the couch, she was talking to me

saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was weak, but

she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her to a

neuro for an

EEG, but my question is how do you tell the difference between a Vagus Vasal

reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding a

seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to her

fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any parameters

about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so that

she is

compliant and doesn't pull the wires off or anything like that. It doesn't

hurt and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or neuro

tells you

" everything is fine " if they didn't see an actual seizure but did see other

abnormalities that

are discussed in the report. The thing to do is get a copy of the letter

report interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range 10.2. We

spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped called the

Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a little

child and let

big daddy take care of you - which is what he was taught was the deal in med

school.

Don't torment him but do insist on getting things explained and knowing what

the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which plays

in to their

getting bad care out of bad doctors. What happens in the doctor's office isn't

going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get information! If

the neuro

has to give it to you with a dollop of paternalism and prejudice, let him do

that. You're

not there to be his psychiatrist, those are his problems and don't let them be

yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some with

seizures, some

without, illuminates his reading of textbooks in a way you can never do by

just doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy

[Guest guest]

Sorry, forgot something. The previous calcium level I gave has fallen from a

high of 11.4 with the addition of Vitamin K, however we are not done with our

calcium problems.

She is very tall but small boned, in the 95% for height for her age. This is

commensurate with her genetics. She also has the beginning of scoliosis and the

dentist is not terribly happy with the development of her lower jaw. I knew

there would be a price to pay for the inability to get calcium where it needed

to be.

Anything I should be aware of as to the scoliosis?

Thanks,

Re: [ ] Re: Andy/-seizure or Vagus vasal?

----- Original Message -----

From: andrewhallcutler

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what this

guy tells you.

==>Related to this fainting incident, the ped did order the EEG and my dd

insisted on a meeting with the neuro. She told his office ahead of time she

wanted other examples of normal EEG's and other not so normal ones. The neuro

was good, patient and explained things satisfactorily. He felt she did not have

seizure activity and explained that Vagus Vasal reactions are not that uncommon

and usually outgrown by the end of adolescence.

She has had a few more vagus vasal reactions always in relation to severe

pain.

We have had her parathyroid checked and it was normal. We got her D levels

about three weeks ago and they are as follows.

Vit D 1-25 Dihyd 55 ref range 15-75

Vit D 25 Hydroxy 63H ref range 20-57

Osteocalcin 79 no ref range

Serum Calcium 9.9 8.6-10.5 rr

Just a few questions; I'm not sure what the last value means. Should she get

any Vitamin D at all? She is off raw milk and drinks D fortified milk.

Thanks,

The received wisdom in MD medicine is that a first seizure is often (more than

half the

time) just a random event that will not occur again, so it isn't appropriate

to consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the various

kinds of

seizures and associated behaviors so you know what to look for if this is a

seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was not

concerned,

said he sees high calcium blood levels at that level frequently and said he

would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes it.

> As he recommended no further blood testing, I guess he is just going to look

at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware of if

it is

happening.

> So, a few questions about the high calcium level in her blood. I carefully

counted her

Vitamin D level and counting food sources and supplementation it is below

1000IU daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her parathyroid?

This is the third

ped we are currently exhausting. Would have been easier and less time

consuming to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2, with

calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at about 500

mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high blood

level of

calcium or should a person's parathyroid be able to regulate the amount of

calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl (5.1)

passed out

after a fall. When she was a toddler, she never fell, was extremely careful.

As she has

gotten better, she now takes many more chances, plays as rough as other kids,

and gets

hurt. The first time it happened, she was taken the ER, and the ped who both

said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without the

pain, she

passed out again as she was brushing her teeth. She seemed stiff initially,

but relaxed

when I picked her up. I was standing right beside her. This episode did seem

different than

the first three, one of which I personally witnessed. Previously, she seemed

dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had hit her

head, hard

on my tile floor. By the time I got her to the couch, she was talking to me

saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was weak, but

she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her to a

neuro for an

EEG, but my question is how do you tell the difference between a Vagus Vasal

reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding a

seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to her

fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any parameters

about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so that

she is

compliant and doesn't pull the wires off or anything like that. It doesn't

hurt and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or neuro

tells you

" everything is fine " if they didn't see an actual seizure but did see other

abnormalities that

are discussed in the report. The thing to do is get a copy of the letter

report interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range 10.2. We

spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped called the

Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a little

child and let

big daddy take care of you - which is what he was taught was the deal in med

school.

Don't torment him but do insist on getting things explained and knowing what

the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which plays

in to their

getting bad care out of bad doctors. What happens in the doctor's office isn't

going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get information! If

the neuro

has to give it to you with a dollop of paternalism and prejudice, let him do

that. You're

not there to be his psychiatrist, those are his problems and don't let them be

yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some with

seizures, some

without, illuminates his reading of textbooks in a way you can never do by

just doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy

[Guest guest]

>

>

> ----- Original Message -----

> From: andrewhallcutler

>

>

> Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

> eEg, and do get it. Then read the neuro's letter report no matter what this

guy tells

you.

>

> ==>Related to this fainting incident, the ped did order the EEG and my dd

insisted on

a meeting with the neuro. She told his office ahead of time she wanted other

examples of

normal EEG's and other not so normal ones. The neuro was good, patient and

explained

things satisfactorily.

You still want to see whatever he said in the written interpretive report.

> He felt she did not have seizure activity and explained that Vagus Vasal

reactions are

not that uncommon and usually outgrown by the end of adolescence.

>

> She has had a few more vagus vasal reactions always in relation to severe

pain.

>

> We have had her parathyroid checked and it was normal. We got her D levels

about

three weeks ago and they are as follows.

>

> Vit D 1-25 Dihyd 55 ref range 15-75

>

> Vit D 25 Hydroxy 63H ref range 20-57

>

> Osteocalcin 79 no ref range

>

> Serum Calcium 9.9 8.6-10.5 rr

>

> Just a few questions; I'm not sure what the last value means. Should she get

any

Vitamin D at all? She is off raw milk and drinks D fortified milk.

These are reasonable enough values I'd just wait and see how things go.

Andy

[Guest guest]

>

> Sorry, forgot something. The previous calcium level I gave has fallen from a

high of 11.4

with the addition of Vitamin K, however we are not done with our calcium

problems.

>

> She is very tall but small boned, in the 95% for height for her age. This is

commensurate

with her genetics. She also has the beginning of scoliosis and the dentist is

not terribly

happy with the development of her lower jaw. I knew there would be a price to

pay for the

inability to get calcium where it needed to be.

Definitely give her Ca supplements.

Andy

[Guest guest]

Load her up on manganese (it activates prolidase) - bran and germ are

excellent food sources.

Look here for other nutritional suggestions for scoliosis:

http://www.scoliosis.com/vitaminsminerals.cfm

-Lana

> Anything I should be aware of as to the scoliosis?

>

> Thanks,

>

>

[Guest guest]

In my experience, tetany is far more likely to be a result of

hypocalcemia than hypercalcemia. Jim

________________________________

From:

[mailto: ] On Behalf Of

Sent: Thursday, June 28, 2007 1:17 PM

Subject: Re: [ ] Re: Andy/-seizure or Vagus vasal?

----- Original Message -----

From: andrewhallcutler

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what

this guy tells you.

==>Related to this fainting incident, the ped did order the EEG and my

dd insisted on a meeting with the neuro. She told his office ahead of

time she wanted other examples of normal EEG's and other not so normal

ones. The neuro was good, patient and explained things satisfactorily.

He felt she did not have seizure activity and explained that Vagus Vasal

reactions are not that uncommon and usually outgrown by the end of

adolescence.

She has had a few more vagus vasal reactions always in relation to

severe pain.

We have had her parathyroid checked and it was normal. We got her D

levels about three weeks ago and they are as follows.

Vit D 1-25 Dihyd 55 ref range 15-75

Vit D 25 Hydroxy 63H ref range 20-57

Osteocalcin 79 no ref range

Serum Calcium 9.9 8.6-10.5 rr

Just a few questions; I'm not sure what the last value means. Should she

get any Vitamin D at all? She is off raw milk and drinks D fortified

milk.

Thanks,

The received wisdom in MD medicine is that a first seizure is often

(more than half the

time) just a random event that will not occur again, so it isn't

appropriate to consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the

various kinds of

seizures and associated behaviors so you know what to look for if this

is a seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was

not concerned,

said he sees high calcium blood levels at that level frequently and said

he would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes

it.

> As he recommended no further blood testing, I guess he is just going

to look at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware

of if it is

happening.

> So, a few questions about the high calcium level in her blood. I

carefully counted her

Vitamin D level and counting food sources and supplementation it is

below 1000IU daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her

parathyroid? This is the third

ped we are currently exhausting. Would have been easier and less time

consuming to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2,

with calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at

about 500 mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high

blood level of

calcium or should a person's parathyroid be able to regulate the amount

of calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out

after a fall. When she was a toddler, she never fell, was extremely

careful. As she has

gotten better, she now takes many more chances, plays as rough as other

kids, and gets

hurt. The first time it happened, she was taken the ER, and the ped who

both said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without

the pain, she

passed out again as she was brushing her teeth. She seemed stiff

initially, but relaxed

when I picked her up. I was standing right beside her. This episode did

seem different than

the first three, one of which I personally witnessed. Previously, she

seemed dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had

hit her head, hard

on my tile floor. By the time I got her to the couch, she was talking to

me saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was

weak, but she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her

to a neuro for an

EEG, but my question is how do you tell the difference between a Vagus

Vasal reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite

that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding

a seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to

her fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so

that she is

compliant and doesn't pull the wires off or anything like that. It

doesn't hurt and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or

neuro tells you

" everything is fine " if they didn't see an actual seizure but did see

other abnormalities that

are discussed in the report. The thing to do is get a copy of the letter

report interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped

called the Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a

little child and let

big daddy take care of you - which is what he was taught was the deal in

med school.

Don't torment him but do insist on getting things explained and knowing

what the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which

plays in to their

getting bad care out of bad doctors. What happens in the doctor's office

isn't going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get

information! If the neuro

has to give it to you with a dollop of paternalism and prejudice, let

him do that. You're

not there to be his psychiatrist, those are his problems and don't let

them be yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some

with seizures, some

without, illuminates his reading of textbooks in a way you can never do

by just doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy

[Guest guest]

Thanks, Lana, for the information and the link. She does get some manganese in

her multi and her hair test shows high normal levels. I'm afraid that her bone

problems are a result of low K, which we didn't catch, and thyroid problems as

the thyroid is integral in regulating calcium.

Both of these have been corrected but she just grew too fast. Hopefully we can

stave this off with enough nutrients before too much damage is done.

Re: [ ] Re: Andy/-seizure or Vagus vasal?

Load her up on manganese (it activates prolidase) - bran and germ are

excellent food sources.

Look here for other nutritional suggestions for scoliosis:

http://www.scoliosis.com/vitaminsminerals.cfm

-Lana

> Anything I should be aware of as to the scoliosis?

>

> Thanks,

>

>

[Guest guest]

Technically anyone with high blood calcium is hypercalcemic, but if for some

reason that calcium is not getting where it needs to go, they end up with

cellular hypocalcemia. They aren't technically hypocalcemic, because their

blood levels are fine, but they show all the symptoms of hypocalcemia.

This is one of the reasons why blood tests are so flawed.

-Lana

On 6/28/07, Popplewell <JPopplewell@...> wrote:

>

> In my experience, tetany is far more likely to be a result of

> hypocalcemia than hypercalcemia. Jim

>

[Guest guest]

Well, in this case could be both, depending on how you look at it. She had high

serum calcium, probably indicating it was getting absorbed just circulating

around in her blood. So we would call that, hypercalcemia when in reality it

would be hypocalcemia, confusing.

Re: [ ] Re: Andy/-seizure or Vagus vasal?

----- Original Message -----

From: andrewhallcutler

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what

this guy tells you.

==>Related to this fainting incident, the ped did order the EEG and my

dd insisted on a meeting with the neuro. She told his office ahead of

time she wanted other examples of normal EEG's and other not so normal

ones. The neuro was good, patient and explained things satisfactorily.

He felt she did not have seizure activity and explained that Vagus Vasal

reactions are not that uncommon and usually outgrown by the end of

adolescence.

She has had a few more vagus vasal reactions always in relation to

severe pain.

We have had her parathyroid checked and it was normal. We got her D

levels about three weeks ago and they are as follows.

Vit D 1-25 Dihyd 55 ref range 15-75

Vit D 25 Hydroxy 63H ref range 20-57

Osteocalcin 79 no ref range

Serum Calcium 9.9 8.6-10.5 rr

Just a few questions; I'm not sure what the last value means. Should she

get any Vitamin D at all? She is off raw milk and drinks D fortified

milk.

Thanks,

The received wisdom in MD medicine is that a first seizure is often

(more than half the

time) just a random event that will not occur again, so it isn't

appropriate to consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the

various kinds of

seizures and associated behaviors so you know what to look for if this

is a seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was

not concerned,

said he sees high calcium blood levels at that level frequently and said

he would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes

it.

> As he recommended no further blood testing, I guess he is just going

to look at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware

of if it is

happening.

> So, a few questions about the high calcium level in her blood. I

carefully counted her

Vitamin D level and counting food sources and supplementation it is

below 1000IU daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her

parathyroid? This is the third

ped we are currently exhausting. Would have been easier and less time

consuming to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2,

with calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at

about 500 mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high

blood level of

calcium or should a person's parathyroid be able to regulate the amount

of calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out

after a fall. When she was a toddler, she never fell, was extremely

careful. As she has

gotten better, she now takes many more chances, plays as rough as other

kids, and gets

hurt. The first time it happened, she was taken the ER, and the ped who

both said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without

the pain, she

passed out again as she was brushing her teeth. She seemed stiff

initially, but relaxed

when I picked her up. I was standing right beside her. This episode did

seem different than

the first three, one of which I personally witnessed. Previously, she

seemed dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had

hit her head, hard

on my tile floor. By the time I got her to the couch, she was talking to

me saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was

weak, but she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her

to a neuro for an

EEG, but my question is how do you tell the difference between a Vagus

Vasal reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite

that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding

a seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to

her fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so

that she is

compliant and doesn't pull the wires off or anything like that. It

doesn't hurt and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or

neuro tells you

" everything is fine " if they didn't see an actual seizure but did see

other abnormalities that

are discussed in the report. The thing to do is get a copy of the letter

report interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped

called the Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a

little child and let

big daddy take care of you - which is what he was taught was the deal in

med school.

Don't torment him but do insist on getting things explained and knowing

what the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which

plays in to their

getting bad care out of bad doctors. What happens in the doctor's office

isn't going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get

information! If the neuro

has to give it to you with a dollop of paternalism and prejudice, let

him do that. You're

not there to be his psychiatrist, those are his problems and don't let

them be yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some

with seizures, some

without, illuminates his reading of textbooks in a way you can never do

by just doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy

[Guest guest]

I can understand how this might be the case, but I'm not sure how it

would come about since the increasing calcium level in the blood should

reduce PTH secretion and simultaneously increase renal calcium excretion

and lower serum calcium levels to a more normal range. Does the effect

you are describing apply both to bone and to muscle and other soft

tissue?

Jim

________________________________

From:

[mailto: ] On Behalf Of Lana Gibbons

Sent: Thursday, June 28, 2007 2:22 PM

Subject: Re: [ ] Re: Andy/-seizure or Vagus vasal?

Technically anyone with high blood calcium is hypercalcemic, but if for

some

reason that calcium is not getting where it needs to go, they end up

with

cellular hypocalcemia. They aren't technically hypocalcemic, because

their

blood levels are fine, but they show all the symptoms of hypocalcemia.

This is one of the reasons why blood tests are so flawed.

-Lana

On 6/28/07, Popplewell <JPopplewell@...

<mailto:JPopplewell%40vmrc.net> > wrote:

>

> In my experience, tetany is far more likely to be a result of

> hypocalcemia than hypercalcemia. Jim

>

[Guest guest]

Confusing to me, certainly. As a rule, intracellular free calcium is

very low anyway. The intracellular:plasma gradient of ionized calcium

is probably on the order of 1:1000 or 1:10000. So the vast majority of

calcium in the body is extracellular, with the cells actually expending

energy to maintain relatively low intracellular calcium levels against

this gradient. I don't see how this condition could be described as

hypocalcemia. Is there a known condition that leads to intracellular

calcium depletion? I'm the first to admit it has been decades since

I've studied cellular metabolism.

Jim

________________________________

From:

[mailto: ] On Behalf Of

Sent: Thursday, June 28, 2007 2:25 PM

Subject: Re: [ ] Re: Andy/-seizure or Vagus vasal?

Well, in this case could be both, depending on how you look at it. She

had high serum calcium, probably indicating it was getting absorbed just

circulating around in her blood. So we would call that, hypercalcemia

when in reality it would be hypocalcemia, confusing.

Re: [ ] Re: Andy/-seizure or Vagus vasal?

----- Original Message -----

From: andrewhallcutler

Did he order an EKG (electrocardiogram) or EEG (electroencephalogram)?

Hopefully an

eEg, and do get it. Then read the neuro's letter report no matter what

this guy tells you.

==>Related to this fainting incident, the ped did order the EEG and my

dd insisted on a meeting with the neuro. She told his office ahead of

time she wanted other examples of normal EEG's and other not so normal

ones. The neuro was good, patient and explained things satisfactorily.

He felt she did not have seizure activity and explained that Vagus Vasal

reactions are not that uncommon and usually outgrown by the end of

adolescence.

She has had a few more vagus vasal reactions always in relation to

severe pain.

We have had her parathyroid checked and it was normal. We got her D

levels about three weeks ago and they are as follows.

Vit D 1-25 Dihyd 55 ref range 15-75

Vit D 25 Hydroxy 63H ref range 20-57

Osteocalcin 79 no ref range

Serum Calcium 9.9 8.6-10.5 rr

Just a few questions; I'm not sure what the last value means. Should she

get any Vitamin D at all? She is off raw milk and drinks D fortified

milk.

Thanks,

The received wisdom in MD medicine is that a first seizure is often

(more than half the

time) just a random event that will not occur again, so it isn't

appropriate to consider

medications until a second one occurs. Halfway reasonable.

I would suggest you read some neuro texts and papers that describe the

various kinds of

seizures and associated behaviors so you know what to look for if this

is a seizure

problem.

> Although my dd brought the high blood calcium to his attention, he was

not concerned,

said he sees high calcium blood levels at that level frequently and said

he would keep an

eye on it.

Ask him WHY he sees high Ca at that level, which is to say what causes

it.

> As he recommended no further blood testing, I guess he is just going

to look at her and

tell when her blood calcium gets higher, geesh!

Yup.

High calcium causes muscle tension - tetany - that you shoiuld be aware

of if it is

happening.

> So, a few questions about the high calcium level in her blood. I

carefully counted her

Vitamin D level and counting food sources and supplementation it is

below 1000IU daily.

So that isn't doing it.

> Why specifically are we watching this? Is this related to her

parathyroid? This is the third

ped we are currently exhausting. Would have been easier and less time

consuming to go

to med school myself than to get answers/help from these people.

> She takes magnesium with every meal. Her cal/mag ratio is approx 1:2,

with calcium

being on the low end compared to magnesium, for clarity.

>

> Is it okay to supplement calcium?

Probably. Blood levels are tightly regulated and don't vary with intake.

>

> Previously we had supplemented calcium, on which she does well, at

about 500 mgs a

day. She also drinks approx a quart of milk a day.

>

> Does the calcium supplementation have anything to do with the high

blood level of

calcium or should a person's parathyroid be able to regulate the amount

of calcium that

gets to the blood regardless of how much they are getting?

>

> Thank you for your attention,

>

>

>

>

> Andy:

>

> Over the summer, there were three seperate incidents when our girl

(5.1) passed out

after a fall. When she was a toddler, she never fell, was extremely

careful. As she has

gotten better, she now takes many more chances, plays as rough as other

kids, and gets

hurt. The first time it happened, she was taken the ER, and the ped who

both said it was

not a seizure, but a Vagus Vasal reaction to pain that some people have.

>

> Today after an hour long hot shower and blow drying her hair, without

the pain, she

passed out again as she was brushing her teeth. She seemed stiff

initially, but relaxed

when I picked her up. I was standing right beside her. This episode did

seem different than

the first three, one of which I personally witnessed. Previously, she

seemed dazed, but this

time appeared very readily conscious.

>

> She was crying as I was carrying her to the family room, but she had

hit her head, hard

on my tile floor. By the time I got her to the couch, she was talking to

me saying that she

felt wobbly. It took her about 20 minutes to fully recover, she was

weak, but she seems

none the worse for wear, physically or cognitively speaking.

>

> She is going to go back to the ped, where I assume they will refer her

to a neuro for an

EEG, but my question is how do you tell the difference between a Vagus

Vasal reaction

and a seizure?

See what the neurologist says and how the EEG comes out.

Spend some time remembering exactly what happened each time and recite

that

accurately to the neurologist.

> If it is true that there is usually some emotional phenoma surrounding

a seizure,

Not always. Depends on the seizure type.

>would it count that she was mildly fussing about two minutes prior to

her fainting about

not getting back to some art project she and I were working on?

>

> I know nothing about EEG's, is there one or many or are they any

parameters about the

administration of one I should know about?

No. They are pretty benign. You just need to be there and be relaxed so

that she is

compliant and doesn't pull the wires off or anything like that. It

doesn't hurt and isn't

unpleasant.

> Also, I have read where you have said a lot of neuro's don't read them

properly, so how

do we make sure the EEG is read properly?

They often read it properly, write a proper report, then the doctor or

neuro tells you

" everything is fine " if they didn't see an actual seizure but did see

other abnormalities that

are discussed in the report. The thing to do is get a copy of the letter

report interpreting

the EEG that the neuro will write.

> Are we or the neuro looking for anything in particular?

Whatever he wants to look for.

> Also, her blood calcium was above ref range, 11.4, high ref range

10.2. We spoke of

this about a month ago and you said get this checked out if there is any

" spasticity " . Does

her stiffness when she fainted count as spasticity?

no, but do mention that to the neurologist.

>She had the same temporary stiffness with what the ER and the ped

called the Vagus

vasal reaction.

Mention this to the neurologist.

>

> Thanks for your attention,

>

You're going to the neurologist for an opinion and service, not to be a

little child and let

big daddy take care of you - which is what he was taught was the deal in

med school.

Don't torment him but do insist on getting things explained and knowing

what the

options, possibilities and choices are.

Most people with epilepsy and their parents develop a lot of fear which

plays in to their

getting bad care out of bad doctors. What happens in the doctor's office

isn't going to

make her better or worse, the only things that are going to help are the

decisions YOU

make based on the ifnormation YOU are able to gather. So get

information! If the neuro

has to give it to you with a dollop of paternalism and prejudice, let

him do that. You're

not there to be his psychiatrist, those are his problems and don't let

them be yours. Your

problem is to get information.

The pediatric neurologist's experience in seeing a zillion kids, some

with seizures, some

without, illuminates his reading of textbooks in a way you can never do

by just doing the

reading. This experience is what is valuable, and what you want to take

advantage of.

Andy