Re: Sam had a Seizure..............:(

[Guest guest]

>>Yes I am hoping very much TST would address the issue and have considered given what Tracey has said in the past about her daughter having increased in seizures just prior to having great gains that since we just started new exercises 6 days before maybe that's what it was. Throwing the Taurine in anyways, not going to do him any harm

its simply amazing the way he has changed shape in just 6 weeks of having it done properly each day, rib cage is no longer coming round the corner before him

Mandi x

That's horrible Mandi, hopefully it will be just a one off and he doesn't go on to develop seizures. I live in dread of this since turned teenage, it seems a high porportion of kids do have this at adolescence, not sure if it's more prevalent in the severe kids.Will the TST address the problem?

[Guest guest]

Thanks Nevin, glad the AED's are helping Roni. its been suggested we try them but not by a medic, I'm inclined to leave it for now and see what happens, all my bits crossed

Mandi x

Sorry to hear that Sam had a seizure, I hope he won't develop more.AS you know my son Roni has been on sodium valproate since his seizures turned out a bit frightening type,so far it is helping him.However I also give him Taurine,carnosine (there is a research about this,I thionk Dr Chez made a trial with the kids who have severe seizures and managed to control it).I am hoping to stop this medication in a 6 months time,I hope!

[Guest guest]

Thanks Tracey, yes I believe this is likely the case too and add to that release of Lead stored in bones during these growth spurts increasing aggression as well..........sigh. He's just back from Youth Club and had a great evening, very calm but interactive with carer and staff in general, fingers crossed.

Part of my fear comes from never having seen a seizure in anybody and both of Sam's have been at school

Mandi x

So this is why I believe seizures are so prevalent in ASD pubescent boys- boys grow much more rapidly then girls at that age.. and the work done by Scotson has shown all the ASD children she has assessed have got an underlying weakness in their diaphragms and breathing mechanisms.. so whilst rapidly growing, and major shift in locus of the brain at the same time... their bodies are doing loads more and demanding more oxygen than their breathing mechanism can produce.

[Guest guest]

That's horrible Mandi, hopefully it will be just a one off and he doesn't go on to develop seizures.

I live in dread of this since turned teenage, it seems a high porportion of kids do have this at adolescence, not sure if it's more prevalent in the severe kids.

Will the TST address the problem?

Vicky

Sam had a Seizure..............

At school yesterday morning, found sitting on the floor, eyes rolled back, white as a sheet with a slight tremor, decided to take himself for a lie down after, cooperated well with school nurse doing obs, rested for and hour and a half then slept for an hour, fine and dandy afterwards and since.

Seizures scare me, he only had one big one before at school again 5 years ago and nothing since till yesterday. Hoping this is not the start of him becoming another statistic in teenage boys with autism.......

Mandi x

[Guest guest]

Do you know it was the fear of seizures years ago that started me on Taurine, I am like a headless chicken if we run out, you may remember lol.

No doubt Tracey will be along to reassure you about the exercises, but it makes sense given what you have said.

Vicky

Re: Sam had a Seizure..............

>>Yes I am hoping very much TST would address the issue and have considered given what Tracey has said in the past about her daughter having increased in seizures just prior to having great gains that since we just started new exercises 6 days before maybe that's what it was. Throwing the Taurine in anyways, not going to do him any harm

its simply amazing the way he has changed shape in just 6 weeks of having it done properly each day, rib cage is no longer coming round the corner before him

Mandi x

That's horrible Mandi, hopefully it will be just a one off and he doesn't go on to develop seizures.

I live in dread of this since turned teenage, it seems a high porportion of kids do have this at adolescence, not sure if it's more prevalent in the severe kids.

Will the TST address the problem?

[Guest guest]

Hi Mandi,

Sorry to hear that Sam had a seizure, I hope he won't develop more.AS you know

my son Roni has been on sodium valproate since his seizures turned out a bit

frightening type,so far it is helping him.However I also give him

Taurine,carnosine (there is a research about this,I thionk Dr Chez made a trial

with the kids who have severe seizures and managed to control it).I am hoping to

stop this medication in a 6 months time,I hope!

>

> At school yesterday morning, found sitting on the floor, eyes rolled back,

> white as a sheet with a slight tremor, decided to take himself for a lie

> down after, cooperated well with school nurse doing obs, rested for and hour

> and a half then slept for an hour, fine and dandy afterwards and since.

>

> Seizures scare me, he only had one big one before at school again 5 years

> ago and nothing since till yesterday. Hoping this is not the start of him

> becoming another statistic in teenage boys with autism.......

>

> Mandi x

>

[Guest guest]

Dear Mandi

 

I think seizures make more sense with a whole bunch less fear when we look at them from the perspective of oxygenation and blood flow to the brain.

 

Now that Sam's diaphragm is building and working better, it is normal to notice rib cage shape change.... The add on from this is a more effective breathing mechanism, which not only means more oxygenation and better bloodflow around the body.. and helpfully to the brain, it also leads to a more efficient exhaling of breath... and this process of alkalisation can help rid the body of long established parasites, yeast and bacteria ( none of these can exist in an alkali environment.)

 

When the body notices increased oxygenation,. I believe it then prepares itself for growth and development- for us this has shown in more reasoned thinking, and improved communication. However the body sometimes develops more quickly than the improving oxygenation levels... and with this mismatch - we got more seizure activity.( really common with periods of growth and very noticeable when teething). So this is why I believe seizures are so prevalent in ASD pubescent boys- boys grow much more rapidly then girls at that age.. and the work done by Scotson has shown all the ASD children she has assessed have got an underlying weakness in their diaphragms and breathing mechanisms.. so whilst rapidly growing, and major shift in locus of the brain at the same time... their bodies are doing loads more and demanding more oxygen than their breathing mechanism can produce.

 

Having had years of fear with Seizures, I now see them simply as an indication that oxygen flow to a part of her brain is not optimal.. and then we can take steps to address it. The really big things have been around food. Definately NO ANIMAL PROTEIN after 1pm each day. and never mixing animal proteins with carbs or potatoes. Also staying hydrated and we limit exposure to WiFi,  and NO microwaved food and little contact with mobile phones.

 

 You may recall that Tash ended up in hospital in June with a convulsion- first in four years... however this was so different to those in the past and have opened the gateway to us now being able to add new TST exercises which within 2 weeks brought about a complete stop to her seizures.... Even mega stress and sleep deprivation with college work did not rock her boat... and on Monday we get to 14 weeks seizure free... longest period since she was 11 months old....

 

With our babies the road to success seems to require a path with a few potholes in it.... and we can all have high hopes and expectations of a very bright outcome for them.... once they can breath properly.

 

Best Wishes

 

 

Tracey

 

 

 

 

 

Hi Mandi,Sorry to hear that Sam had a seizure, I hope he won't develop more.AS you know my son Roni has been on sodium valproate since his seizures turned out a bit frightening type,so far it is helping him.However I also give him Taurine,carnosine (there is a research about this,I thionk Dr Chez made a trial with the kids who have severe seizures and managed to control it).I am hoping to stop this medication in a 6 months time,I hope! >> At school yesterday morning, found sitting on the floor, eyes rolled back,

> white as a sheet with a slight tremor, decided to take himself for a lie > down after, cooperated well with school nurse doing obs, rested for and hour > and a half then slept for an hour, fine and dandy afterwards and since.

> > Seizures scare me, he only had one big one before at school again 5 years > ago and nothing since till yesterday. Hoping this is not the start of him > becoming another statistic in teenage boys with autism.......

> > Mandi x>

[Guest guest]

oh mandi poor you,poor sam! of course its not a statistic such a worry hope

things ok imediately afterwards all the best Isobel

>

> At school yesterday morning, found sitting on the floor, eyes rolled back,

> white as a sheet with a slight tremor, decided to take himself for a lie

> down after, cooperated well with school nurse doing obs, rested for and hour

> and a half then slept for an hour, fine and dandy afterwards and since.

>

> Seizures scare me, he only had one big one before at school again 5 years

> ago and nothing since till yesterday. Hoping this is not the start of him

> becoming another statistic in teenage boys with autism.......

>

> Mandi x

>

[Guest guest]

Thinking of you and Sam and fingers ccrossed for you. We are in this place as

well at the moment - Henry has had two night time seizures involving falling out

of bed in only 9 days. I hadn't witnessed a seizure for five or six years until

then. He's going to have an EEG knocked out with melatonin. I want to look at

all the biomed ways of supporting his neuro function.

(Haven't tried carnitine - where's the best source and how much is generally

used?)

Margarey

> >

> > At school yesterday morning, found sitting on the floor, eyes rolled back,

> > white as a sheet with a slight tremor, decided to take himself for a lie

> > down after, cooperated well with school nurse doing obs, rested for and

hour

> > and a half then slept for an hour, fine and dandy afterwards and since.

> >

> > Seizures scare me, he only had one big one before at school again 5 years

> > ago and nothing since till yesterday. Hoping this is not the start of him

> > becoming another statistic in teenage boys with autism.......

> >

> > Mandi x

> >

>

[Guest guest]

Mandi,Really, sorry to hear the news. I know it's not nearly the same thing but taurine has done wonders here. DS was having facial tics a while back and I was very worried but with increasing taurine they are a thing of the past. I started giving it after listening to Unprovoked Seizures in Autistic Individuals by Tapan Audhya phd on Autism one. He recommended a cocktail for seizures and I know little about the subject but thought I'd tell you about the presentation.Really just wanted to say sorry to hear the

news.All the best, Subject: Re: Sam had a Seizure..............:(To:

Autism-Biomedical-Europe Date: Saturday, November 27, 2010, 5:07

AM

>>Yes I am hoping very much TST would address the issue and have considered given what Tracey has said in the past about her daughter having increased in seizures just prior to having great gains that since we just started new exercises 6 days before maybe that's what it was. Throwing the Taurine in anyways, not going to do him any harm

its simply amazing the way he has changed shape in just 6 weeks of having it done properly each day, rib cage is no longer coming round the corner before him

Mandi x

That's horrible Mandi, hopefully it will be just a one off and he doesn't go on to develop seizures. I live in dread of this since turned teenage, it seems a high porportion of kids do have this at adolescence, not sure if it's more prevalent in the severe kids.Will the TST address the problem?

[Guest guest]

Thanks so much for posting Kate, I do find myself calmer this time than before, I mailed Tracey straight away off list and that did help me lots and that in itself has helped siblings and his DP carer too. School see so much of this type of thing, they are well set up, very caring so that helps as well

Mandi x

Hi Mandy

To date I have lost track of the number of seizures I have faced with Charlie in the space of one year of them starting. Initially I use to hold my breath and end up shaking afterwards, then fearing the next one and not being able to get rid of the knot in my stomach of dread. I have written little on this site as I feel until I get a handle on this that I have little to offer in giving any thoughts. Right now I am finally in a better space and feel that I am learning to accept that life has its little glitches.

When I was at my deepest low point over the summer, I had an amazing ray of positivity and generosity from Tracey. I think I would have had a nervous breakdown with out her amazing support. She dropped everything when i was in chelsea westminster hospital high dependency unit and even stayed in over night when we needed someone with her calmness and experience to help move forw ard. In a bizarre way she managed to make me see that seizures are not a bad thing just something to work through and help our amazingly gifted kids come out the other side. We are now on AEM (sodium valproate) and like others I hope this is only a short term thing. We have a long journey to go and much to learn but I am so incredibly grateful for the support from others on this forum.

My thoughts are with you and I look forward to hearing how well Sam is doing in the future.

With loads of Love

Kate

(Ps Charlie is now down to three seizures a week - life is looking up!!!)

I've not tried Carn-Aware but have tried regular Carnosine alongside Zinc and Vit E he was already getting and did not notice any difference, this was pre his first seizure, yonks ago when it fist came out but he needs waaaay more Zinc and Vit E than in these tabs

Mx

Oh noooooo, this is the one I've read about in the past

http://www.carn-aware.com/

Thinking of you and Sam and fingers ccrossed for you. We are in this place as well at the moment - Henry has had two night time seizures involving falling out of bed in only 9 days. I hadn't witnessed a seizure for five or six years until then. He's going to have an EEG knocked out with melatonin. I want to look at all the biomed ways of supporting his neuro function.(Haven't tried carnitine - where's the best source and how much is generally used?)Margarey> >> > At school yesterday morning, found sitting on the floor, eyes rolled back, > > white as a sheet with a slight tremor, decided to take himself for a lie > > down after, cooperated well with school nurse doing obs, rested for and hour > > and a half then slept for an hour, fine and dandy afterwards and since.> > > > Seizures scare me, he only had one big one before at school again 5 years > > ago and nothing since till yesterday. Hoping this is not the start of him > > becoming another statistic in teenage boys with autism.......> > > > Mandi x> >>

[Guest guest]

Re the lead: do you think it's worth giving calcium? I can't understand all the

stuff about calcium channeks and why calcium might not be good in some cases,

but I remember reading that in pregnant women if they were given a calciun

supplement there was less lead found in their bloodstream.

Margaret

>

> Thanks Tracey, yes I believe this is likely the case too and add to that

> release of Lead stored in bones during these growth spurts increasing

> aggression as well..........sigh. He's just back from Youth Club and had a

great

> evening, very calm but interactive with carer and staff in general, fingers

> crossed.

>

> Part of my fear comes from never having seen a seizure in anybody and both

> of Sam's have been at school

>

> Mandi x

>

>

> In a message dated 26/11/2010 20:37:31 GMT Standard Time,

> thelifechangers@... writes:

>

> So this is why I believe seizures are so prevalent in ASD pubescent boys-

> boys grow much more rapidly then girls at that age.. and the work done by

> Scotson has shown all the ASD children she has assessed have got an

> underlying weakness in their diaphragms and breathing mechanisms.. so whilst

> rapidly growing, and major shift in locus of the brain at the same time...

> their bodies are doing loads more and demanding more oxygen than their

> breathing mechanism can produce.

>

[Guest guest]

All the best to you Kate. We had a terrible period of seizures when H was a baby

so I have some idea how awful it can be.

Margaret

> > > >

> > > > At school yesterday morning, found sitting on the floor, eyes rolled

back,

> > > > white as a sheet with a slight tremor, decided to take himself for a lie

> > > > down after, cooperated well with school nurse doing obs, rested for and

hour

> > > > and a half then slept for an hour, fine and dandy afterwards and since.

> > > >

> > > > Seizures scare me, he only had one big one before at school again 5

years

> > > > ago and nothing since till yesterday. Hoping this is not the start of

him

> > > > becoming another statistic in teenage boys with autism.......

> > > >

> > > > Mandi x

> > > >

> > >

> >

> >

> >

> >

> >

>

[Guest guest]

Thanks, we do quite a bit of Magnesium, Glycinate and Malate mostly at the moment. He has always done better on higher doses and in the past it was an attempt to balance dietary Calcium.

He is very vocal today, cheeky with when she came to do TST and ultra cooperative, she said she could feel a positive shift in his 'energy' half way through.

Mx

if you decide to try calcium and it does not work, try giving in combowith magnesium, some can take it fine in the combo> >> > Thanks Tracey, yes I believe this is likely the case too and add tothat> > release of Lead stored in bones during these growth spurtsincreasing> > aggression as well..........sigh. He's just back from Youth Cluband had> a great> > evening, very calm but interactive with carer and staff in general,> fingers> > crossed.> >> > Part of my fear comes from never having seen a seizure in anybodyand> both> > of Sam's have been at school> >> > Mandi x> >> >> > In a message dated 26/11/2010 20:37:31 GMT Standard Time,> > thelifechangers@ writes:> >> > So this is why I believe seizures are so prevalent in ASD pubescent> boys-> > boys grow much more rapidly then girls at that age.. and the workdone> by> > Scotson has shown all the ASD children she has assessed havegot> an> > underlying weakness in their diaphragms and breathing mechanisms..so> whilst> > rapidly growing, and major shift in locus of the brain at the same> time...> > their bodies are doing loads more and demanding more oxygen thantheir> > breathing mechanism can produce.> >>

[Guest guest]

Thanks , was this Autism One Radio or a conference presentation?

Mx

Really, sorry to hear the news. I know it's not nearly the same thing but taurine has done wonders here. DS was having facial tics a while back and I was very worried but with increasing taurine they are a thing of the past. I started giving it after listening to Unprovoked Seizures in Autistic Individuals by Tapan Audhya phd on Autism one. He recommended a cocktail for seizures and I know little about the subject but thought I'd tell you about the presentation.

[Guest guest]

if you decide to try calcium and it does not work, try giving in combo

with magnesium, some can take it fine in the combo

> >

> > Thanks Tracey, yes I believe this is likely the case too and add to

that

> > release of Lead stored in bones during these growth spurts

increasing

> > aggression as well..........sigh. He's just back from Youth Club

and had

> a great

> > evening, very calm but interactive with carer and staff in general,

> fingers

> > crossed.

> >

> > Part of my fear comes from never having seen a seizure in anybody

and

> both

> > of Sam's have been at school

> >

> > Mandi x

> >

> >

> > In a message dated 26/11/2010 20:37:31 GMT Standard Time,

> > thelifechangers@ writes:

> >

> > So this is why I believe seizures are so prevalent in ASD pubescent

> boys-

> > boys grow much more rapidly then girls at that age.. and the work

done

> by

> > Scotson has shown all the ASD children she has assessed have

got

> an

> > underlying weakness in their diaphragms and breathing mechanisms..

so

> whilst

> > rapidly growing, and major shift in locus of the brain at the same

> time...

> > their bodies are doing loads more and demanding more oxygen than

their

> > breathing mechanism can produce.

> >

>

[Guest guest]

Conference presentation. I still have the cocktail written down in my notes if you don't get around to watching it. Subject: Re: Sam had a Seizure..............:(To: Autism-Biomedical-Europe Date: Sunday, November 28, 2010, 12:56 AM

Thanks , was this Autism One Radio or a conference presentation?

Mx

Really, sorry to hear the news. I know it's not nearly the same thing but taurine has done wonders here. DS was having facial tics a while back and I was very worried but with increasing taurine they are a thing of the past. I started giving it after listening to Unprovoked Seizures in Autistic Individuals by Tapan Audhya phd on Autism one. He recommended a cocktail for seizures and I know little about the subject but thought I'd tell you about the presentation.

[Guest guest]

Hi Mandi,

Sorry to hear about Sam. Hope things go well and that you all get plenty of

rest too.

(just ordered a bag of loose organic nettle from baldwins - taking about 2-3

weeks for the order though).

Sandyxx

[Guest guest]

Hi Mandi,

Just seen this (as away in Africa), so sorry to hear about the seizure.

Hopefully it is a one-off and Sam is more settled now. I really do

understand what it feels like.

We saw N's seizures settle down to his " normal " pattern after a long 3

months of increased seizures from Sept thru to Nov, but now that we are

away he has become unsettled again, seems to always be the case when we

visit my parents and really can see that the higher altitude/air

pressure plays a part with reduced oxygenation.

Thinking of you and Sam.

emily x

>

> At school yesterday morning, found sitting on the floor, eyes rolled

back,

> white as a sheet with a slight tremor, decided to take himself for a

lie

> down after, cooperated well with school nurse doing obs, rested for

and hour

> and a half then slept for an hour, fine and dandy afterwards and

since.

>

> Seizures scare me, he only had one big one before at school again 5

years

> ago and nothing since till yesterday. Hoping this is not the start of

him

> becoming another statistic in teenage boys with autism.......

>

> Mandi x

>