Re: Why the docs don't know

[Guest guest]

It is very sad that the docs either don't know or don't want to know or

don't care! Our neuro tried to talk us into trying lin on klonopin or

the Canadian version (mogadan). I asked him what the side effects were and

he said " drowsiness " . That was it. So of course I came home and looked it

up on the internet and saw what others on this list said about klonopin and

found out how horribly addictive it was. Our neuro ALWAYS downplays the

side effects. When he mentioned trying Topomax again one time, I started

screaming because the seizures were way better than the side effects that we

experienced on topomax. And I had already told him that numerous times.

But its not just neurologists, I think Dr.s are just trained to prescribe

drugs and thats their answers to most things. My husband has trouble with

blood sugar levels and gets a lot of headaches and has some tingly/fainting

spells. He talked to his Dr. about it and his Dr. just offered him some

prescription drug. I looked up his symptoms and discovered the vitamin

supplement called Chromium picolinate. He started taking that daily and his

headaches went away and he has not had anymore trouble. Why can't they open

their minds to think that maybe vitamin supplements or a diet change might

be in order and then if that doesn't work, then try some drugs. Why are

drugs their only answer? And why not ever mention the side effects until we

ask what they are? I'm sure glad that I'm not the only one with lousey Dr.s

kathy

Re: withdrawl seizures.DeEtte

>

>

> Wondering why

> > the doc's don't know all this stuff too. I've

> > described what goes on and he's never mentioned the

> > things I've read here.

> >

> > Thanks again,

> >

>

>

>

[Guest guest]

I guess we all have to remember that doctors don't know it all or even try to

know it all. From my experience they are too busy to sit down and talk to you

like they should. I know our neuro is so busy that to make an appt for a check

up is like 4 mos or more down the road. And they started with evening and

weekend clinics to accomodate all the patients they have.

I'm curious...anyone try a regular neuro as opposed to a pediatric neuro? And I

saw someone mention a neuro specializing in the keto diet. I didn't know there

was such a thing. I thought a neurologist was a neurologist.

[Guest guest]

I just wanted to say that we have been really lucky with the Paediatrician

we got 3 1/2 years ago. Although Jack was misdiagnosed 5 times, he was

determined to find out what was really wrong. Every time we went through

bad times (which was often in the early days) I would ring him and he would

always return my call immediately and never treated me like a nutty mother.

Unfortunately he left in March to return to where he came from originally,

England. Two nights ago I checked all my emails and found one from him

wanting to know how things were going and the progress that Jack had made

since being diagnosed and starting the keto diet. Why do the good ones

always leave??!!

Sue in NZ - Mum to Jack 4 (keto kid since Sept 2001) and Molly 2

Re: Why the docs don't know

> I guess we all have to remember that doctors don't know it all or even try

to know it all. From my experience they are too busy to sit down and talk

to you like they should. I know our neuro is so busy that to make an appt

for a check up is like 4 mos or more down the road. And they started with

evening and weekend clinics to accomodate all the patients they have.

>

> I'm curious...anyone try a regular neuro as opposed to a pediatric neuro?

And I saw someone mention a neuro specializing in the keto diet. I didn't

know there was such a thing. I thought a neurologist was a neurologist.

>

>

> " 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

>

>

>

>

[Guest guest]

I just wanted to say that we have been really lucky with the Paediatrician

we got 3 1/2 years ago. Although Jack was misdiagnosed 5 times, he was

determined to find out what was really wrong. Every time we went through

bad times (which was often in the early days) I would ring him and he would

always return my call immediately and never treated me like a nutty mother.

Unfortunately he left in March to return to where he came from originally,

England. Two nights ago I checked all my emails and found one from him

wanting to know how things were going and the progress that Jack had made

since being diagnosed and starting the keto diet. Why do the good ones

always leave??!!

Sue in NZ - Mum to Jack 4 (keto kid since Sept 2001) and Molly 2

Re: Why the docs don't know

> I guess we all have to remember that doctors don't know it all or even try

to know it all. From my experience they are too busy to sit down and talk

to you like they should. I know our neuro is so busy that to make an appt

for a check up is like 4 mos or more down the road. And they started with

evening and weekend clinics to accomodate all the patients they have.

>

> I'm curious...anyone try a regular neuro as opposed to a pediatric neuro?

And I saw someone mention a neuro specializing in the keto diet. I didn't

know there was such a thing. I thought a neurologist was a neurologist.

>

>

> " 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

>

>

>

>

[Guest guest]

I would love to hear if it works for adult althought it's been used for

children mostly. and to the others who are waiting for my answers of the other

questions, please be patient because I want to make sure I have as much as info

before I answer the questions.

Patti wrote: I know that a neurologist is definitely NOT

a neurologist..... they're not all the same. We've seen five different ones....

mostly lousy. Our current one is a ped neuro (in Portland, OR) who specializes

in the Keto diet (there definitely is such a thing) .... mostly just because he

ended up being " converted " to the idea of the diet when he went to a Keto

conference a number of years ago. He accepted the invitation to the conference

and headed out, armed with all kinds of research and expecting to blast all

these " kooks " out of the water and show them how wrong they were...... Well, it

didn't quite happen that way. In fact, it was quite the opposite when he met

family after family who had miraculous results on the diet. Now he is the ONLY

neuro in our area that is open to it, trained in it, and actively practices

it..... because he saw the potential with his own eyes and then sought the

knowledge and the training. He does have some older teens and a few adults on

the diet as well, I believe. I think there are probably not many regular neuros

doing the diet as opposed to ped neuros because the diet is usually thought of

as being most effective with kids.

Patti

Re: Why the docs don't know

I'm curious...anyone try a regular neuro as opposed to a pediatric neuro? And

I saw someone mention a neuro specializing in the keto diet. I didn't know

there was such a thing. I thought a neurologist was a neurologist.

[Guest guest]

I would love to hear if it works for adult althought it's been used for

children mostly. and to the others who are waiting for my answers of the other

questions, please be patient because I want to make sure I have as much as info

before I answer the questions.

Patti wrote: I know that a neurologist is definitely NOT

a neurologist..... they're not all the same. We've seen five different ones....

mostly lousy. Our current one is a ped neuro (in Portland, OR) who specializes

in the Keto diet (there definitely is such a thing) .... mostly just because he

ended up being " converted " to the idea of the diet when he went to a Keto

conference a number of years ago. He accepted the invitation to the conference

and headed out, armed with all kinds of research and expecting to blast all

these " kooks " out of the water and show them how wrong they were...... Well, it

didn't quite happen that way. In fact, it was quite the opposite when he met

family after family who had miraculous results on the diet. Now he is the ONLY

neuro in our area that is open to it, trained in it, and actively practices

it..... because he saw the potential with his own eyes and then sought the

knowledge and the training. He does have some older teens and a few adults on

the diet as well, I believe. I think there are probably not many regular neuros

doing the diet as opposed to ped neuros because the diet is usually thought of

as being most effective with kids.

Patti

Re: Why the docs don't know

I'm curious...anyone try a regular neuro as opposed to a pediatric neuro? And

I saw someone mention a neuro specializing in the keto diet. I didn't know

there was such a thing. I thought a neurologist was a neurologist.

[Guest guest]

It was a paediatric epileptologist that eventually diagnosed . Our

paediatric neuro simply does not have time to look into epilepsy (and rec

treatments) in great depth - he has so many kids to cover with a vast array

of neuro disturbances.

Sad thing is, that the paediatric epileptologist we saw (in another city to

us) is the only one in the country, but she has to do 'other neuro' work due

to the shortage of 'general' paed neuros here as well. (3 in the whole

country).

Had we not kicked up big time, we would still be waiting to get in to see

her, 2 yrs down the track - 'tis definitely the squeakiest wheel syndrome

here with our medical system,

Hill in NZ

Re: Why the docs don't know

> >Date: Wed, 19 Jun 2002 17:56:51 -0400

> >

> >I guess we all have to remember that doctors don't know it all or even

try

> >to know it all. From my experience they are too busy to sit down and

talk

> >to you like they should. I know our neuro is so busy that to make an

appt

> >for a check up is like 4 mos or more down the road. And they started

with

> >evening and weekend clinics to accomodate all the patients they have.

> >

> >I'm curious...anyone try a regular neuro as opposed to a pediatric neuro?

> >And I saw someone mention a neuro specializing in the keto diet. I

didn't

> >know there was such a thing. I thought a neurologist was a neurologist.

>

>

>

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

>

>

> " 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

>

>

>

>

[Guest guest]

It was a paediatric epileptologist that eventually diagnosed . Our

paediatric neuro simply does not have time to look into epilepsy (and rec

treatments) in great depth - he has so many kids to cover with a vast array

of neuro disturbances.

Sad thing is, that the paediatric epileptologist we saw (in another city to

us) is the only one in the country, but she has to do 'other neuro' work due

to the shortage of 'general' paed neuros here as well. (3 in the whole

country).

Had we not kicked up big time, we would still be waiting to get in to see

her, 2 yrs down the track - 'tis definitely the squeakiest wheel syndrome

here with our medical system,

Hill in NZ

Re: Why the docs don't know

> >Date: Wed, 19 Jun 2002 17:56:51 -0400

> >

> >I guess we all have to remember that doctors don't know it all or even

try

> >to know it all. From my experience they are too busy to sit down and

talk

> >to you like they should. I know our neuro is so busy that to make an

appt

> >for a check up is like 4 mos or more down the road. And they started

with

> >evening and weekend clinics to accomodate all the patients they have.

> >

> >I'm curious...anyone try a regular neuro as opposed to a pediatric neuro?

> >And I saw someone mention a neuro specializing in the keto diet. I

didn't

> >know there was such a thing. I thought a neurologist was a neurologist.

>

>

>

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

>

>

> " 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

>

>

>

>

[Guest guest]

Wow Sue,

You were really lucky to find a doctor like that. I have come across a few and

did have a wonderful pediatrician at one time but with a change in insurance we

had to change docs. He was so calm and never rushed us and initially he was the

one who got us going on testing for Tuberous Sclerosis. I just wish I could

find a neurologist like that. I did have a pretty good one but he left to

pursue research somewhere else. I think even he could stand being around the

other neuros!!! He was too normal!

in Kansas City

[Guest guest]

Wow Sue,

You were really lucky to find a doctor like that. I have come across a few and

did have a wonderful pediatrician at one time but with a change in insurance we

had to change docs. He was so calm and never rushed us and initially he was the

one who got us going on testing for Tuberous Sclerosis. I just wish I could

find a neurologist like that. I did have a pretty good one but he left to

pursue research somewhere else. I think even he could stand being around the

other neuros!!! He was too normal!

in Kansas City