Re: Too much stress and too little sleep- an unexpected visit to A and E

May 29, 2010

Dear Tracey,

I am, so sorry to hear your daughter's seizure, it's upsetting I know.

When my son had the fifth one, I blamed myself because I realized that the day

before I made him to play on line games which increases his attention on the

Lumosity web site.it was a big mistake, any activity which needs great

concentration is risky and triggers seizure I think.He also recovered very

quickly, this is the good moment.

I take this opportunity to ask you what antiglare screen you are using? My Dr

(neurolog) recommended this but on the epilepsy action web site,it says that

that sort of screens are not much useful to reduce the flickering..We also

reduced the watching TV time as the dr suggested.

Wishing your daughter better health and speedy recovery.

Nevin

>

> Dear Group

>

> Many of you know that my daughter Tatijana is epileptic, and we are finding

good results with TST.

>

> Over the past few weeks a combination of too much pressure of outstanding work

for college, distruption with older brother leaving home and too little good

quality sleep pushed her over the edge and she had her first clonic tonic

seizure in 4 years.

>

> The reason for posting it to let you understand my current thinking about our

children having limited good quality oxygen supply and that doing too much with

them either physically through physio etc or mentally through educational

programmes, or them getting tooo stressed creates an oxygen deficit.- and for

the epileptics.. this shows itself with increased seizure activity.

>

> Since every experience is simply a way of learning new information, I have

been able to take a step back and revisit what has been happening recently in

her life.

>

> The lesson for me is that I must find ways for Tash to release her stress...

when she did spend a few minutes a day punching the free standing punch bag it

lifted her spirits and she seemed less stressed.

> I should have intervened earlier and understood what the situation was at

College.. Now I have I find that the only person putting pressure on anyone was

Tatijana putting all the pressure on herself!

>

> On the plus side, Tatijana recovered really quickly from the seizure.. in and

out of it within under a minute... however with the improvement in her

metabolism with TST and her oxygen levels.. her body absorbed more of the

Epistatus and far quicker.. which created a complication of her blood pressure

dropping rapidly and her hands going blue... Again another valuable lesson.. her

body is much more receptive and we need to use half the amount of meds...

>

> So on the whole... we have learned a lot... Tatijana's " blowing a fuse " has

left her totally chilled and unstressed!

>

> With Best Wishes

>

> Tracey

>

May 29, 2010

Hi Nevin

I guess when we know what contributes to seizures.. it is easier to make adjustments.

Is your son photosensitive? Has he actually been tested with flashing lights to see if this causes him problems.?

Tatijana had this test done at Addenbrookes hospital... what a laugh.. she loved all the bright flashing lights and blissfully looked at them all getting happier and happier.. I was sitting in the same room feeling more and more nauseus!- We have not looked into any glare screens for this reason.

The newer TFT screens are supposed to be much better with much less flicker.. so I think there is much less risk of photosensitive seizures from watching the computer screens. I wonder how computer literate your Neuro guy is... the advice he is giving became out of date about 5 years ago I think!

Thanks for your message

Onwards and upwards

Tracey

On Sat, May 29, 2010 at 5:47 PM, tiredbee2006 <Nevin.Penny@...> wrote:

Dear Tracey, I am, so sorry to hear your daughter's seizure, it's upsetting I know.When my son had the fifth one, I blamed myself because I realized that the day before I made him to play on line games which increases his attention on the Lumosity web site.it was a big mistake, any activity which needs great concentration is risky and triggers seizure I think.He also recovered very quickly, this is the good moment.

I take this opportunity to ask you what antiglare screen you are using? My Dr (neurolog) recommended this but on the epilepsy action web site,it says that that sort of screens are not much useful to reduce the flickering..We also reduced the watching TV time as the dr suggested.

Wishing your daughter better health and speedy recovery.Nevin >

> Dear Group> > Many of you know that my daughter Tatijana is epileptic, and we are finding good results with TST.> > Over the past few weeks a combination of too much pressure of outstanding work for college, distruption with older brother leaving home and too little good quality sleep pushed her over the edge and she had her first clonic tonic seizure in 4 years.

> > The reason for posting it to let you understand my current thinking about our children having limited good quality oxygen supply and that doing too much with them either physically through physio etc or mentally through educational programmes, or them getting tooo stressed creates an oxygen deficit.- and for the epileptics.. this shows itself with increased seizure activity.

> > Since every experience is simply a way of learning new information, I have been able to take a step back and revisit what has been happening recently in her life.> > The lesson for me is that I must find ways for Tash to release her stress... when she did spend a few minutes a day punching the free standing punch bag it lifted her spirits and she seemed less stressed.

> I should have intervened earlier and understood what the situation was at College.. Now I have I find that the only person putting pressure on anyone was Tatijana putting all the pressure on herself!> > On the plus side, Tatijana recovered really quickly from the seizure.. in and out of it within under a minute... however with the improvement in her metabolism with TST and her oxygen levels.. her body absorbed more of the Epistatus and far quicker.. which created a complication of her blood pressure dropping rapidly and her hands going blue... Again another valuable lesson.. her body is much more receptive and we need to use half the amount of meds...

> > So on the whole... we have learned a lot... Tatijana's " blowing a fuse " has left her totally chilled and unstressed! > > With Best Wishes> > > > >

> > Tracey>

May 29, 2010

Dear Tracey,

Sorry that Tatijana has had a clonic tonic, it must have been scarey for

all of you especially after 4 yrs with none. Glad to hear though that

she is feeling better and hope that you find different ways for her to

release her stress.

I've found that the minute Norman concentrates (like when he gives me

100% eye contact, or starts babbling and it goes on for a reasonable

length of time) we ran into problems and sure enough he gets a tonic

clonic. We've now learnt not to push him or extend this behaviour, so

we try to distract him to something else. These moments when he is

clearly with us are few and far between but is really a shame when you

have to stop it as you just want him to continue with the eye contact

and the babbling so badly. I'm sure though in his case, that there are

probably a lot, lot more stressors that he encounters which are very

difficult for us to know/realise and act on (example a simple thing like

walking, sometimes he just refuses and next thing you know he has

crashed down on the floor and yet other times he is just being simply a

stubborn teenager and wants to be left alone!).

Guess what I'm trying to say is that sometimes its difficult to jump in

and redirect from a stressful situation and that is if you are even

aware of the stress being there..... I know it's not easy but please

don't blame yourself for not intervening beforehand. Hopefully

Tatijana can learn to identify and pull herself away from such stressess

and as you say arming yourselves with things to destress is a way

forward.

Thanks for the warning with the Epistatus and the effect, I'll watch out

for this. Were you in A & E when giving it, that must have been very

worrying.

Thinking of you and Tatijana and all my best wishes,

emily

>

> Dear Group

>

> Many of you know that my daughter Tatijana is epileptic, and we are

finding good results with TST.

>

> Over the past few weeks a combination of too much pressure of

outstanding work for college, distruption with older brother leaving

home and too little good quality sleep pushed her over the edge and she

had her first clonic tonic seizure in 4 years.

>

> The reason for posting it to let you understand my current thinking

about our children having limited good quality oxygen supply and that

doing too much with them either physically through physio etc or

mentally through educational programmes, or them getting tooo stressed

creates an oxygen deficit.- and for the epileptics.. this shows itself

with increased seizure activity.

>

> Since every experience is simply a way of learning new information, I

have been able to take a step back and revisit what has been happening

recently in her life.

>

> The lesson for me is that I must find ways for Tash to release her

stress... when she did spend a few minutes a day punching the free

standing punch bag it lifted her spirits and she seemed less stressed.

> I should have intervened earlier and understood what the situation was

at College.. Now I have I find that the only person putting pressure on

anyone was Tatijana putting all the pressure on herself!

>

> On the plus side, Tatijana recovered really quickly from the seizure..

in and out of it within under a minute... however with the improvement

in her metabolism with TST and her oxygen levels.. her body absorbed

more of the Epistatus and far quicker.. which created a complication of

her blood pressure dropping rapidly and her hands going blue... Again

another valuable lesson.. her body is much more receptive and we need to

use half the amount of meds...

>

> So on the whole... we have learned a lot... Tatijana's " blowing a

fuse " has left her totally chilled and unstressed!

>

> With Best Wishes

>

> Tracey

>

May 30, 2010

Hi

Thanks for the message of support. I think that what I was aware of is that I had become complacent because there were so many positive changes.. and this reminds me that she is still a delicate little flower ( the lovely expression her osteopath uses)

We administered the epistatus at home.. I gave 10 mg which stopped the seizure developing.. It was about 15 mins later when we got to hospital that her veins started constricting and her blood pressure dropped to 80 over 30.. so this is why I am certain it was the epistatus that caused the problem.. and that the dose I gave her was tooo high.. Historically she has been able to cope with up to 2 mls when administered 10 mins apart!! and historically her blood pressure whilst in status has been very very high..

Other than the hangover when she woke up, she had no other signs of problems.. and her speech is much more fluid.. We will wait to see if there are any other gains.. as you know we have found that with TST she is having some larger seizures though she recovers more quickly and we see neuro gains afterwards.

The positive plus for us too was that the staff in A and E and EAU were absolutely brilliant and supported our decisions about treatment 100%.. and were happy for us to go home as soon as they had bloods and urine results... and as ever... nothing showed up.. a relief as we were beginning to think she was reacting to epilim too.- (I think that as TST developments continue, her body will begin to reject Epilim.. so this is something to watch out for.)

Many thanks for the very kind words... it is now half term and we will have a lot of chill time in this household.. and good news too we think we have found a live in Au Pair to be a big sister for Tash.. and I might be able to exercise my grey matter in a work environment again... .. The au pair has off her own back enrolled in an epilepsy awareness and treatment course in her home town in Germany.. so that is a really good sign

Lots of Rainbows here today

Tracey

On Sun, May 30, 2010 at 3:53 AM, emilyscorer <emilyscorer@...> wrote:

Dear Tracey,Sorry that Tatijana has had a clonic tonic, it must have been scarey forall of you especially after 4 yrs with none. Glad to hear though thatshe is feeling better and hope that you find different ways for her to

release her stress.I've found that the minute Norman concentrates (like when he gives me100% eye contact, or starts babbling and it goes on for a reasonablelength of time) we ran into problems and sure enough he gets a tonic

clonic. We've now learnt not to push him or extend this behaviour, sowe try to distract him to something else. These moments when he isclearly with us are few and far between but is really a shame when you

have to stop it as you just want him to continue with the eye contactand the babbling so badly. I'm sure though in his case, that there areprobably a lot, lot more stressors that he encounters which are very

difficult for us to know/realise and act on (example a simple thing likewalking, sometimes he just refuses and next thing you know he hascrashed down on the floor and yet other times he is just being simply astubborn teenager and wants to be left alone!).

Guess what I'm trying to say is that sometimes its difficult to jump inand redirect from a stressful situation and that is if you are evenaware of the stress being there..... I know it's not easy but please

don't blame yourself for not intervening beforehand. HopefullyTatijana can learn to identify and pull herself away from such stressessand as you say arming yourselves with things to destress is a wayforward.

Thanks for the warning with the Epistatus and the effect, I'll watch outfor this. Were you in A & E when giving it, that must have been veryworrying.Thinking of you and Tatijana and all my best wishes,

emily>> Dear Group

>> Many of you know that my daughter Tatijana is epileptic, and we arefinding good results with TST.>> Over the past few weeks a combination of too much pressure ofoutstanding work for college, distruption with older brother leaving

home and too little good quality sleep pushed her over the edge and shehad her first clonic tonic seizure in 4 years.>> The reason for posting it to let you understand my current thinkingabout our children having limited good quality oxygen supply and that

doing too much with them either physically through physio etc ormentally through educational programmes, or them getting tooo stressedcreates an oxygen deficit.- and for the epileptics.. this shows itselfwith increased seizure activity.

>> Since every experience is simply a way of learning new information, Ihave been able to take a step back and revisit what has been happeningrecently in her life.>> The lesson for me is that I must find ways for Tash to release her

stress... when she did spend a few minutes a day punching the freestanding punch bag it lifted her spirits and she seemed less stressed.> I should have intervened earlier and understood what the situation was

at College.. Now I have I find that the only person putting pressure onanyone was Tatijana putting all the pressure on herself!>> On the plus side, Tatijana recovered really quickly from the seizure..

in and out of it within under a minute... however with the improvementin her metabolism with TST and her oxygen levels.. her body absorbedmore of the Epistatus and far quicker.. which created a complication of

her blood pressure dropping rapidly and her hands going blue... Againanother valuable lesson.. her body is much more receptive and we need touse half the amount of meds...>> So on the whole... we have learned a lot... Tatijana's " blowing a

fuse " has left her totally chilled and unstressed!>> With Best Wishes>>>>>>> Tracey>

May 30, 2010

Hi Tracey

Sorry to hear that Tatijana (and you & your family) have been through a tough time lately, although it does sound that something good is going on neurologically for her to make these gains afterwards. As the good ole saying goes, sometimes you have to get worse before you get better.

Wonderful news about the Au pair - you sound like you've hit the jackpot!

All the best Wishes

xx

Autism Treatment From: thelifechangers@...Date: Sun, 30 May 2010 11:15:31 +0100Subject: Re: Re: Too much stress and too little sleep- an unexpected visit to A and E

Hi

Thanks for the message of support. I think that what I was aware of is that I had become complacent because there were so many positive changes.. and this reminds me that she is still a delicate little flower ( the lovely expression her osteopath uses)

We administered the epistatus at home.. I gave 10 mg which stopped the seizure developing.. It was about 15 mins later when we got to hospital that her veins started constricting and her blood pressure dropped to 80 over 30.. so this is why I am certain it was the epistatus that caused the problem.. and that the dose I gave her was tooo high.. Historically she has been able to cope with up to 2 mls when administered 10 mins apart!! and historically her blood pressure whilst in status has been very very high..

Other than the hangover when she woke up, she had no other signs of problems.. and her speech is much more fluid.. We will wait to see if there are any other gains.. as you know we have found that with TST she is having some larger seizures though she recovers more quickly and we see neuro gains afterwards.

The positive plus for us too was that the staff in A and E and EAU were absolutely brilliant and supported our decisions about treatment 100%.. and were happy for us to go home as soon as they had bloods and urine results... and as ever... nothing showed up.. a relief as we were beginning to think she was reacting to epilim too.- (I think that as TST developments continue, her body will begin to reject Epilim.. so this is something to watch out for.)

Many thanks for the very kind words... it is now half term and we will have a lot of chill time in this household.. and good news too we think we have found a live in Au Pair to be a big sister for Tash.. and I might be able to exercise my grey matter in a work environment again... .. The au pair has off her own back enrolled in an epilepsy awareness and treatment course in her home town in Germany.. so that is a really good sign

Lots of Rainbows here today

Tracey

On Sun, May 30, 2010 at 3:53 AM, emilyscorer <emilyscorer > wrote:

Dear Tracey,Sorry that Tatijana has had a clonic tonic, it must have been scarey forall of you especially after 4 yrs with none. Glad to hear though thatshe is feeling better and hope that you find different ways for her torelease her stress.I've found that the minute Norman concentrates (like when he gives me100% eye contact, or starts babbling and it goes on for a reasonablelength of time) we ran into problems and sure enough he gets a tonicclonic. We've now learnt not to push him or extend this behaviour, sowe try to distract him to something else. These moments when he isclearly with us are few and far between but is really a shame when youhave to stop it as you just want him to continue with the eye contactand the babbling so badly. I'm sure though in his case, that there areprobably a lot, lot more stressors that he encounters which are verydifficult for us to know/realise and act on (example a simple thing likewalking, sometimes he just refuses and next thing you know he hascrashed down on the floor and yet other times he is just being simply astubborn teenager and wants to be left alone!).Guess what I'm trying to say is that sometimes its difficult to jump inand redirect from a stressful situation and that is if you are evenaware of the stress being there..... I know it's not easy but pleasedon't blame yourself for not intervening beforehand. HopefullyTatijana can learn to identify and pull herself away from such stressessand as you say arming yourselves with things to destress is a wayforward.Thanks for the warning with the Epistatus and the effect, I'll watch outfor this. Were you in A & E when giving it, that must have been veryworrying.Thinking of you and Tatijana and all my best wishes,emily>> Dear Group>> Many of you know that my daughter Tatijana is epileptic, and we arefinding good results with TST.>> Over the past few weeks a combination of too much pressure ofoutstanding work for college, distruption with older brother leavinghome and too little good quality sleep pushed her over the edge and shehad her first clonic tonic seizure in 4 years.>> The reason for posting it to let you understand my current thinkingabout our children having limited good quality oxygen supply and thatdoing too much with them either physically through physio etc ormentally through educational programmes, or them getting tooo stressedcreates an oxygen deficit.- and for the epileptics.. this shows itselfwith increased seizure activity.>> Since every experience is simply a way of learning new information, Ihave been able to take a step back and revisit what has been happeningrecently in her life.>> The lesson for me is that I must find ways for Tash to release herstress... when she did spend a few minutes a day punching the freestanding punch bag it lifted her spirits and she seemed less stressed.> I should have intervened earlier and understood what the situation wasat College.. Now I have I find that the only person putting pressure onanyone was Tatijana putting all the pressure on herself!>> On the plus side, Tatijana recovered really quickly from the seizure..in and out of it within under a minute... however with the improvementin her metabolism with TST and her oxygen levels.. her body absorbedmore of the Epistatus and far quicker.. which created a complication ofher blood pressure dropping rapidly and her hands going blue... Againanother valuable lesson.. her body is much more receptive and we need touse half the amount of meds...>> So on the whole... we have learned a lot... Tatijana's "blowing afuse" has left her totally chilled and unstressed!>> With Best Wishes>>>>>>> Tracey>

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May 30, 2010

Dear

Thanks for the kind words.. we have so much to be grateful for.. when she was 8 she was in hospital at least every 10 weeks.... what a long way we have come.. with much more good stuff lying ahead on our journey.

Best Wishes

Tracey

On Sun, May 30, 2010 at 11:33 AM, michelle lacey <michelle0471@...> wrote:

Hi Tracey Sorry to hear that Tatijana (and you & your family) have been through a tough time lately, although it does sound that something good is going on neurologically for her to make these gains afterwards. As the good ole saying goes, sometimes you have to get worse before you get better.

Wonderful news about the Au pair - you sound like you've hit the jackpot! All the best Wishes xx

Autism Treatment From: thelifechangers@...

Date: Sun, 30 May 2010 11:15:31 +0100Subject: Re: Re: Too much stress and too little sleep- an unexpected visit to A and E