Questions related with seizure

[Guest guest]

Hello again

I am sorry to bring my son's condition frequently here but I feel not very clear

in my mind.My son had the second seizure last Sunday and I received the

appointment from the Neurology dept at Royal Free on the 12th of February,we've

got more than 10 days ahead.

The secretary is telling me if he has the third one obviously you can bring him

here, emergency dept. she said...For me it is such a big frustration, waiting

without knowing the reasons why he had the first and the second seizure..he has

hyperventilation,perhaps other metabolic issues..One friend pointed glutamate

and seizures link.last year his test from metametrix showed some problems with

glutamate..

At present I don't know should I wait for the appointment or find a neurologist

privately and get the answer.Could it be combined both?I mean without leaving

the NHS system, can I take him to a neurologist, do you know any good one ?

At present my priority to prevent future seizures,I don't know what is the

cause?

I am timid to give anything but still keep the general vitamins suppl.

I am not sending him to the school,because I don't know what measures the school

should take.

Shortly,has anyone know a good neurologist?

Thanks

Nevin

[Guest guest]

Hi Nevin

 

My guess is that the hyperventilation - poor oxygen flow to the brain is part of the problem.... Neuros limit of treatment is AEDs anti epileptic drugs or in the case of my daughter offering me major brain surgery. His seizures are a spike of electrical flow..

 

If you really want to help your son as I know you do then begin to speak to therapists who have experience of this breathing problem and seizures ... and follow what they are doing which has already helped children in similar situations.

 

 

 

The only person I know who has this pedigree to deal with this problem and already has many patients who are a lot better already is Scotson...

 

 

Very interesting I was speaking to someone today who said that in cerebral palsy children they have discovered that children on AEDs progress slower than those not on them.... the thinking is that sometimes seizures can actually be part of the process of recovery.. AEDs can reduce the flow of oxygen to the brain..

 

 

What might you not gain by simply ringing and asking her what she thinks... it will give you a second opinion before going down the Neuro route so that you can consider two very different approaches.

 

 

 

Best wishes

 

 

 

Tracey

On Fri, Jan 29, 2010 at 4:05 PM, tiredbee2006 <Nevin.Penny@...> wrote:

 

Hello againI am sorry to bring my son's condition frequently here but I feel not very clear in my mind.My son had the second seizure last Sunday and I received the appointment from the Neurology dept at Royal Free on the 12th of February,we've got more than 10 days ahead.

The secretary is telling me if he has the third one obviously you can bring him here, emergency dept. she said...For me it is such a big frustration, waiting without knowing the reasons why he had the first and the second seizure..he has hyperventilation,perhaps other metabolic issues..One friend pointed glutamate and seizures link.last year his test from metametrix showed some problems with glutamate..

At present I don't know should I wait for the appointment or find a neurologist privately and get the answer.Could it be combined both?I mean without leaving the NHS system, can I take him to a neurologist, do you know any good one ?

At present my priority to prevent future seizures,I don't know what is the cause?I am timid to give anything but still keep the general vitamins suppl.I am not sending him to the school,because I don't know what measures the school should take.

Shortly,has anyone know a good neurologist?ThanksNevin

[Guest guest]

Hi Tracey,

Thank you for making a comment.At this point I need definately what did it cause

his seizures? My son has very complex body profile.Seeing the neurologist as a

first step is important to understand the electrical activity in his brain if he

has ongoing things..DrJulu from the Breakspear Hospital is a specialist

Autonomic Neurophysiologist measures brainstem function.It must be a useful test

but very costly.Our DR says combination of DrJulu's work with a neurologist

perhaps will be very helpful,but not much chance from NHS I think.

Perhaps my son has metabolic disorder.As I said in my previous e-mail

glutamate-seizure link may be important.Because last year he had glutamate level

was high,DR said..this is excitoxin,his ammonia was also high,so we reduced

protein intake,gave him B6...May be this time is thsame..Or he is craving for

chocolate...may be something goes with serotonin-dopamin??

or his hormones particularly testesterone level may be important,as he has lots

of hair he is like a monkey,that makes me think that.Simply hyperventilation is

the main area but other metabolic issues can not be ignored,everything comes

like a package makes things much harder to deal with.

However I will talk to , there is no doubt her therapy will bring

benefits.Having said that healing crisis....whatever the way it is named is not

easily acceptable for me.Each seizures may take something from him for good and

very life threatening.

That's why I can not take a breath and wait for the appointment.

Many thanks for your deep thought.

Warmly

Nevin

>

> >

> >

> > Hello again

> >

> > I am sorry to bring my son's condition frequently here but I feel not very

> > clear in my mind.My son had the second seizure last Sunday and I received

> > the appointment from the Neurology dept at Royal Free on the 12th of

> > February,we've got more than 10 days ahead.

> > The secretary is telling me if he has the third one obviously you can bring

> > him here, emergency dept. she said...For me it is such a big frustration,

> > waiting without knowing the reasons why he had the first and the second

> > seizure..he has hyperventilation,perhaps other metabolic issues..One friend

> > pointed glutamate and seizures link.last year his test from metametrix

> > showed some problems with glutamate..

> > At present I don't know should I wait for the appointment or find a

> > neurologist privately and get the answer.Could it be combined both?I mean

> > without leaving the NHS system, can I take him to a neurologist, do you know

> > any good one ?

> > At present my priority to prevent future seizures,I don't know what is the

> > cause?

> > I am timid to give anything but still keep the general vitamins suppl.

> > I am not sending him to the school,because I don't know what measures the

> > school should take.

> > Shortly,has anyone know a good neurologist?

> > Thanks

> > Nevin

> >

> >

> >

>

[Guest guest]

Hi Nevin

 

The very best thing you can do is to find a way to look to the positive outcome you want for him... Our sensitive children feel our anxiety and this heightens theres.. I used to meditate often to find the inner peace to show the calming energy Tash needed.

 

What will you get from these very expensive tests... a diagnosis  or a positive way to stop the condition?- I think these tests give you a label to stick on children.. and not a helpful or positive way to recover him from the condition.

 

Every thing you mention of his symptoms... are just symptoms.. and each of them has to have a cause... until you get to the cause.. which seems to be linked to the hyperventilations.. what is causing his hyperventilation?  in common with nearly every other autistic child, he possibly has a problem with his diaphragm and cannot breathe properly.. no matter how much other stuff you do with him, until he can breathe properly and independently, without drug or mechanical support,  his body will struggle to function.

 

In stillness and light, sitting quietly with ourselves, we can discover that gentle inner voice which guides us to the outcome on which we focus....

 

 

Tracey

 

 

On Fri, Jan 29, 2010 at 6:32 PM, tiredbee2006 <Nevin.Penny@...> wrote:

 

Hi Tracey,Thank you for making a comment.At this point I need definately what did it cause his seizures? My son has very complex body profile.Seeing the neurologist as a first step is important to understand the electrical activity in his brain if he has ongoing things..DrJulu from the Breakspear Hospital is a specialist Autonomic Neurophysiologist measures brainstem function.It must be a useful test but very costly.Our DR says combination of DrJulu's work with a neurologist perhaps will be very helpful,but not much chance from NHS I think.

Perhaps my son has metabolic disorder.As I said in my previous e-mail glutamate-seizure link may be important.Because last year he had glutamate level was high,DR said..this is excitoxin,his ammonia was also high,so we reduced protein intake,gave him B6...May be this time is thsame..Or he is craving for chocolate...may be something goes with serotonin-dopamin??

or his hormones particularly testesterone level may be important,as he has lots of hair he is like a monkey,that makes me think that.Simply hyperventilation is the main area but other metabolic issues can not be ignored,everything comes like a package makes things much harder to deal with.

However I will talk to , there is no doubt her therapy will bring benefits.Having said that healing crisis....whatever the way it is named is not easily acceptable for me.Each seizures may take something from him for good and very life threatening.

That's why I can not take a breath and wait for the appointment.Many thanks for your deep thought.WarmlyNevin > > >> >> > Hello again> >> > I am sorry to bring my son's condition frequently here but I feel not very> > clear in my mind.My son had the second seizure last Sunday and I received

> > the appointment from the Neurology dept at Royal Free on the 12th of> > February,we've got more than 10 days ahead.> > The secretary is telling me if he has the third one obviously you can bring

> > him here, emergency dept. she said...For me it is such a big frustration,> > waiting without knowing the reasons why he had the first and the second> > seizure..he has hyperventilation,perhaps other metabolic issues..One friend

> > pointed glutamate and seizures link.last year his test from metametrix> > showed some problems with glutamate..> > At present I don't know should I wait for the appointment or find a> > neurologist privately and get the answer.Could it be combined both?I mean

> > without leaving the NHS system, can I take him to a neurologist, do you know> > any good one ?> > At present my priority to prevent future seizures,I don't know what is the> > cause?

> > I am timid to give anything but still keep the general vitamins suppl.> > I am not sending him to the school,because I don't know what measures the> > school should take.> > Shortly,has anyone know a good neurologist?

> > Thanks> > Nevin> >> > > >>

[Guest guest]

I am not giving you medical advice here but I would like to share what happened

with my son. When he first had seizures, a friend contacted Mrs of

Foresight. The message came back that Mrs thought he should take Ziman

drops (which Foresight sell) and magnesium. Ziman drops I think contain B6, zinc

and manganese. I told the neurologist about this and he said for heaven's sake

don't gove him this. (So I didn't). Later on the neurologist gave Henry b6 and

the seizures stopped. Mrs had put my friend's husband on a supplement

programme years ago for his epiepsy. He used to have about one seizure a month.

By that time he had been seizure free for 12 years and had cut his AEDs by half.

They obviously think a lot of Mrs !

Margaret

>

> Hello again

>

> I am sorry to bring my son's condition frequently here but I feel not very

clear in my mind.My son had the second seizure last Sunday and I received the

appointment from the Neurology dept at Royal Free on the 12th of February,we've

got more than 10 days ahead.

> The secretary is telling me if he has the third one obviously you can bring

him here, emergency dept. she said...For me it is such a big frustration,

waiting without knowing the reasons why he had the first and the second

seizure..he has hyperventilation,perhaps other metabolic issues..One friend

pointed glutamate and seizures link.last year his test from metametrix showed

some problems with glutamate..

> At present I don't know should I wait for the appointment or find a

neurologist privately and get the answer.Could it be combined both?I mean

without leaving the NHS system, can I take him to a neurologist, do you know any

good one ?

> At present my priority to prevent future seizures,I don't know what is the

cause?

> I am timid to give anything but still keep the general vitamins suppl.

> I am not sending him to the school,because I don't know what measures the

school should take.

> Shortly,has anyone know a good neurologist?

> Thanks

> Nevin

>

[Guest guest]

Dear Margaret,

Thank you for responding.My son has been on B6 (50mg) a day, plus the other

vit.B complex..He takes zinc picolinate (3omg) daily and eats manganese rich

food almonds daily and he still had the seizures.So understanding the cause (in

my brain it links with his hyperventilation)of this incidents are important for

me.But this time I will insist at the neurology appointment not to ignore

possibility of metabolic imbalances.I will take some research papers with

me.There will be little time to talk but at least they can hear once again my

concerns and if it is ignored I will put them in formal letter this time.

I'm glad that you solved seizure issues in your family in a great degree.

Thanks

nevin

> >

> > Hello again

> >

> > I am sorry to bring my son's condition frequently here but I feel not very

clear in my mind.My son had the second seizure last Sunday and I received the

appointment from the Neurology dept at Royal Free on the 12th of February,we've

got more than 10 days ahead.

> > The secretary is telling me if he has the third one obviously you can bring

him here, emergency dept. she said...For me it is such a big frustration,

waiting without knowing the reasons why he had the first and the second

seizure..he has hyperventilation,perhaps other metabolic issues..One friend

pointed glutamate and seizures link.last year his test from metametrix showed

some problems with glutamate..

> > At present I don't know should I wait for the appointment or find a

neurologist privately and get the answer.Could it be combined both?I mean

without leaving the NHS system, can I take him to a neurologist, do you know any

good one ?

> > At present my priority to prevent future seizures,I don't know what is the

cause?

> > I am timid to give anything but still keep the general vitamins suppl.

> > I am not sending him to the school,because I don't know what measures the

school should take.

> > Shortly,has anyone know a good neurologist?

> > Thanks

> > Nevin

> >

>

[Guest guest]

Hi Tracey,

How nice to hear your positive thoughts,I wish I could change myself in that

direction a bit but I should perhaps..

I don't need an extra diagnosis but I need to know his condition now.This is

necessary to fight for more treatments for him, to adjust his school routine in

order him to be safe otherwise his life could be in danger.That's why I am

insisting to see a neurologist to understand his condition now.

However I 've decided to talk to ,at least he can have an assessment if she

agrees to see us on that basis.

Thank you so much.

Nevin

> >

> > >

> > > >

> > > >

> > > > Hello again

> > > >

> > > > I am sorry to bring my son's condition frequently here but I feel not

> > very

> > > > clear in my mind.My son had the second seizure last Sunday and I

> > received

> > > > the appointment from the Neurology dept at Royal Free on the 12th of

> > > > February,we've got more than 10 days ahead.

> > > > The secretary is telling me if he has the third one obviously you can

> > bring

> > > > him here, emergency dept. she said...For me it is such a big

> > frustration,

> > > > waiting without knowing the reasons why he had the first and the second

> > > > seizure..he has hyperventilation,perhaps other metabolic issues..One

> > friend

> > > > pointed glutamate and seizures link.last year his test from metametrix

> > > > showed some problems with glutamate..

> > > > At present I don't know should I wait for the appointment or find a

> > > > neurologist privately and get the answer.Could it be combined both?I

> > mean

> > > > without leaving the NHS system, can I take him to a neurologist, do you

> > know

> > > > any good one ?

> > > > At present my priority to prevent future seizures,I don't know what is

> > the

> > > > cause?

> > > > I am timid to give anything but still keep the general vitamins suppl.

> > > > I am not sending him to the school,because I don't know what measures

> > the

> > > > school should take.

> > > > Shortly,has anyone know a good neurologist?

> > > > Thanks

> > > > Nevin

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

We have been through seizures. I agree very frightening. Neuros had no insight and nothing to offer except antiepileptic meds. They also tend to get cross, if you don't want the medications. We felt they considered us irresponsible.

Some things that helped us:

-diet (some of the seizures seemed to be allergic reactions, eg he had partial seizure after eating wheat and egg).

-cranial osteopathy (did your child have a fall recently? Can trigger seizures)

-supplements eg DMG, omega oil, mineral supplements (mineral imbalances can cause seizures) -stress can cause seizures

Most paeds and neuros do not believe that food intolerances cause seizures, however I have come across other patients who have experienced this. There is a lot of anectdotal evidence.

EEGs are occasionaly helpful if they show something abnormal, but a "normal" EEG proves nothing, all it shows is that there was no seizure activity during the time of EEG.

Hope you find the cause soon

Good luck