Re: My teenager

April 10, 2002

-

Sorry to hear you've been feeling crummy. I don't know about for the rest of you, but I know when I feel crummy, I'm always more "aware" of my ICD. (On the good days, I almost forget it's there.) Don't let yourself get too stressed about it going off -- if it does, it will be because it really needs to, and it's actually over really fast. Have the doctors been able to suggest anything to help your symptoms? Definitely let them know how you've been feeling ... I know some of the meds. I was on actually made me feel a lot worse (and some of the side effects didn't even really kick in for me until I'd been on it for 4 weeks or so.) -- In fact, one med. I was on even seemed to actually INCREASE the arrhythmia's in my particular situation. Have you had your first ICD interrogation yet?

Glad to hear that you're happy with the steps your daughter's pediatrician is taking with her. It sounds like she is being very thorough, and that's always good.

Feel free to e-mail me privately jdivine@... if you just need to vent. I definitely know how frustrating it can be when you just plain feel crummy all the time! I just got my ICD about 5 weeks ago also, so we can be "newbies" together.

PS -- I read your other post about scrapbooking -- I'm glad to know there's a fellow scrapbooker on the board!

Take care -

ita

My teenager

My daughter had her appointment today with her pediatrician (actually it was another Dr in the practice). I had to send her with her grandpa and talk to them by phone. I'm feeling dizzy & lightheaded and my blood sugar is up. My Congestive Heart Failure symptoms are stronger today. I was afraid I'd pass out or have this ICD go off. Only had it for 5 weeks now and a little afraid still of when and were it will happen.

Anyway, the doctor herself has an ICD. She took me very seriously about my concerns and ran through the things she would do........all of which we know........EKG and blood work was done already at the hopsital across the street to begin with. Then she will send the info to Childrens Hospital and have them do Event, Holter and/or Stress test. Finally a Dr who isn't willing to just stay with just a diagnosis of Asthma. She was concerned that it was really bad with dance and PE.

Another thing that came up was the fact that had lost 19lbs in a little over 2 months. She has never been overweight to begin with. They checked for anemia and it was ok. The blood tests will check her for Diabetes. Anyone elses kids lost a lot of weight like that?

At least we are on the road!!!

Please visit the Zapper homepage athttp://www.ZapLife.org

April 10, 2002

In a message dated 4/10/02 10:27:55 AM Eastern Daylight Time, Scrapnfriend@... writes:

I read your other post about scrapbooking -- I'm glad to know there's a fellow scrapbook on the board!

Just curious, and I am looking for a hobby, What are you scrapping?

April 10, 2002

I have always had different reactions to meds. Some work (but only for a short amount of time) some don't and some make things worse for me. We just never know. We have to play around with them and most of the time it is while I am in the hospital (just in case). Guess the ICD will keep me from having to go in to try them now. I'm going to make an appointment with my doc to see about new meds to help me feel better. Although, I think if I didn't do anything (shopping, going to sons baseball & daughters dance) I would feel better. Seems like whenever I do these things I have days of feeling crummy afterwards. Anyone else have this?

It's funny how things happen. Last night at 2am my daughter had a "fluttery feeling" as she put it and tightness in her chest. Used my blood pressure/heart rate monitor on her. Her BP was 140/96 and heart rate 98. I could tell from it that she was having an arrythmia. She and I think that this isn't the first time but that she is more aware of it today after seeing the Doc and being aware of what might be going on. What should a 15year old's heart rate & BP be? I am calling the docs when they open but curious now.

Re: My teenager

-

Sorry to hear you've been feeling crummy. I don't know about for the rest of you, but I know when I feel crummy, I'm always more "aware" of my ICD. (On the good days, I almost forget it's there.) Don't let yourself get too stressed about it going off -- if it does, it will be because it really needs to, and it's actually over really fast. Have the doctors been able to suggest anything to help your symptoms? Definitely let them know how you've been feeling ... I know some of the meds. I was on actually made me feel a lot worse (and some of the side effects didn't even really kick in for me until I'd been on it for 4 weeks or so.) -- In fact, one med. I was on even seemed to actually INCREASE the arrhythmia's in my particular situation. Have you had your first ICD interrogation yet?

Glad to hear that you're happy with the steps your daughter's pediatrician is taking with her. It sounds like she is being very thorough, and that's always good.

Feel free to e-mail me privately jdivine@... if you just need to vent. I definitely know how frustrating it can be when you just plain feel crummy all the time! I just got my ICD about 5 weeks ago also, so we can be "newbies" together.

PS -- I read your other post about scrapbooking -- I'm glad to know there's a fellow scrapbooker on the board!

Take care -

ita

April 10, 2002

I have 3 kids so I have a lot of things to scrap. Our family albums from the last 15 years. Vacations, sons sports and daughters dance. I include any tickets, programs, maps etc. Scrapbooking has became more than just a way to share pictures......for some it is more about the artwork than just the pictures......for others it is cronicaling their family story. For me it is the pictures along with some of both the art and the story.

To see some of the things people are doing check out this site

http://www.twopeasinabucket.com/layouts/

From: pschatsky@...

Sent: Wednesday, April 10, 2002 10:46 AM

Subject: Re: My teenager

In a message dated 4/10/02 10:27:55 AM Eastern Daylight Time, Scrapnfriend@... writes:

I read your other post about scrapbooking -- I'm glad to know there's a fellow scrapbook on the board!Just curious, and I am looking for a hobby, What are you scrapping? Please visit the Zapper homepage athttp://www.ZapLife.org

April 10, 2002

Yep, -- I'm with you -- it's the whole idea of art/story/pictures etc. that appeals to me -- and incidentally, I LOVE that two peas in a bucket site! They have GREAT motivational quotes and things for all kinds of occasions. Many people find it to be a very therapeutic outlet.

ita

Re: My teenager

In a message dated 4/10/02 10:27:55 AM Eastern Daylight Time, Scrapnfriend@... writes:

I read your other post about scrapbooking -- I'm glad to know there's a fellow scrapbook on the board!Just curious, and I am looking for a hobby, What are you scrapping? Please visit the Zapper homepage athttp://www.ZapLife.org

April 10, 2002

.. I do believe the key is in learning to pace ourselves... when

we feel good we tend to keep on going then pay the price... I know

that's how it is for me anyway... so it's important to learn our

limits and then not to exceed them.

JES in NJ

God Bless America

Believe in the power of a dream

Although, I think if I didn't do anything (shopping, going to sons

baseball & daughters dance) I would feel better. Seems like whenever

I do these things I have days of feeling crummy afterwards. Anyone

else have this?

>

> >

>

April 11, 2002

JES,

I guess the most frustrating part is that these things used to be minor to me.........I was always the super mom/woman and had a lot of energy. Now I can't even sit at a game or recital without being exhausted. Just very frustrated with this whole thing.

Thanks,

in CA

Re: My teenager

.. I do believe the key is in learning to pace ourselves... when we feel good we tend to keep on going then pay the price... I know that's how it is for me anyway... so it's important to learn our limits and then not to exceed them.JES in NJGod Bless AmericaBelieve in the power of a dream :)Although, I think if I didn't do anything (shopping, going to sons baseball & daughters dance) I would feel better. Seems like whenever I do these things I have days of feeling crummy afterwards. Anyone else have this?> > > > > > Please visit the Zapper homepage athttp://www.ZapLife.org

April 11, 2002

... I hear you ... loudly and clearly... I use to have my own

child care business along w/running hubby's building business... and

was chief pooper scooper and food manager of 3 outdoor dog pens...

had b'fast on the table, at least 2 loads of wash on the line and

dogs done before first child arrived at 7:15AM ... then I'd do the

house work, play w/the kids, take 'em for walks, do crafts, write a

little report on each child to go home w/mommy/daddy to read so

they'd know what little Susie or did all day and have a home

cooked meal on table when hubby walked in the door at 5 ... now I'm

lucky if I accomplish what use to be done by 7:15AM before 7:15PM I

no longer do the child care think and as for getting house work done,

forget about it ... trust me, I know the felling of frustration...

but it doesn't change that we do have our limitations... and from

personal experience I think if we push beyond them we do pay the

price... like not being able to move out of the lazy boy for about 24

hrs because we're so drained ... 'still think it's key to pace

ourselves ... get our priorities in order and learn to delegate some

of our tasks... kids can do some simple chores like setting tables

and helping w/folding wash... you could even make a little game of it

I bet

JES in NJ

God Bless America

Dreams begin with a simple thought and in time they grow.

> JES,

>

> I guess the most frustrating part is that these things used to be

minor to me.........I was always the super mom/woman and had a lot of

energy. Now I can't even sit at a game or recital without being

exhausted. Just very frustrated with this whole thing.

>

> Thanks,

>

> in CA

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

April 11, 2002

JES,

Thanks for the support and the words of encouragement. Not only do I get frustrated and feel as if I should do more but those around me are so used to me doing it ALL that they don't realise that they are adding to my feeling badly.

in CA

Re: My teenager

... I hear you ... loudly and clearly... I use to have my own child care business along w/running hubby's building business... and was chief pooper scooper and food manager of 3 outdoor dog pens... had b'fast on the table, at least 2 loads of wash on the line and dogs done before first child arrived at 7:15AM ... then I'd do the house work, play w/the kids, take 'em for walks, do crafts, write a little report on each child to go home w/mommy/daddy to read so they'd know what little Susie or did all day and have a home cooked meal on table when hubby walked in the door at 5 ... now I'm lucky if I accomplish what use to be done by 7:15AM before 7:15PM I no longer do the child care think and as for getting house work done, forget about it ... trust me, I know the felling of frustration... but it doesn't change that we do have our limitations... and from personal experience I think if we push beyond them we do pay the price... like not being able to move out of the lazy boy for about 24 hrs because we're so drained ... 'still think it's key to pace ourselves ... get our priorities in order and learn to delegate some of our tasks... kids can do some simple chores like setting tables and helping w/folding wash... you could even make a little game of it I bet :)JES in NJGod Bless AmericaDreams begin with a simple thought and in time they grow.> JES,> > I guess the most frustrating part is that these things used to be minor to me.........I was always the super mom/woman and had a lot of energy. Now I can't even sit at a game or recital without being exhausted. Just very frustrated with this whole thing.> > Thanks,> > in CA> ----- Original Message ----- Please visit the Zapper homepage athttp://www.ZapLife.org

June 27, 2010

Hi Alison

It is worth looking at the amazing work Scotson is doing with her TST (The Scotson Technique) therapy... she believes that at the heart of all neurological issues, including epilepsy, ASD, CP etc, lies an immature breathing mechanism and an inability for the body to maintain good oxygen levels..

Once the breathing, improved diaphragm and lungs are in place, improvements can happen more easily.and many of the more recognised ASD interventions have the potential to produce more gains without the risk of reaching a plateau.

... With seizures.. if too much is done too quickly, it can aggrevate the seizure inclination.

Best wishes and welcome to the group

Tracey

On Sun, Jun 27, 2010 at 11:03 AM, Alison Wiles <awiles84@...> wrote:

Hello This is my first post. Our son is 14 and has ASD, seizures and OCD. We are taking him to a DAN doctor here in the UK for the first time next week. Is there any advice you can give me to prepare for the assessment and is there anyone else who is starting out with their teen? Am half way through reading McClandess' book so learning as much as I can. Thanks in advance!

AlisonSent from my iPhone

June 27, 2010

Hi Alison

It is worth looking at the amazing work Scotson is doing with her TST (The Scotson Technique) therapy... she believes that at the heart of all neurological issues, including epilepsy, ASD, CP etc, lies an immature breathing mechanism and an inability for the body to maintain good oxygen levels..

Once the breathing, improved diaphragm and lungs are in place, improvements can happen more easily.and many of the more recognised ASD interventions have the potential to produce more gains without the risk of reaching a plateau.

... With seizures.. if too much is done too quickly, it can aggrevate the seizure inclination.

Best wishes and welcome to the group

Tracey

On Sun, Jun 27, 2010 at 11:03 AM, Alison Wiles <awiles84@...> wrote:

Hello This is my first post. Our son is 14 and has ASD, seizures and OCD. We are taking him to a DAN doctor here in the UK for the first time next week. Is there any advice you can give me to prepare for the assessment and is there anyone else who is starting out with their teen? Am half way through reading McClandess' book so learning as much as I can. Thanks in advance!

AlisonSent from my iPhone

June 27, 2010

Hi Tracey, thanks for the welcome and the information I will have a read on

their website, looks very interesting although I can't see my son sitting still

for very long! Would you know what success rate they have had with teenagers

with ASD?

Alison

>

> >

> > Hello This is my first post. Our son is 14 and has ASD, seizures and OCD.

> > We are taking him to a DAN doctor here in the UK for the first time next

> > week. Is there any advice you can give me to prepare for the assessment and

> > is there anyone else who is starting out with their teen? Am half way

> > through reading McClandess' book so learning as much as I can.

> > Thanks in advance!

> >

> > Alison

> >

> > Sent from my iPhone

> >

>

June 27, 2010

Hi Tracey, thanks for the welcome and the information I will have a read on

their website, looks very interesting although I can't see my son sitting still

for very long! Would you know what success rate they have had with teenagers

with ASD?

Alison

>

> >

> > Hello This is my first post. Our son is 14 and has ASD, seizures and OCD.

> > We are taking him to a DAN doctor here in the UK for the first time next

> > week. Is there any advice you can give me to prepare for the assessment and

> > is there anyone else who is starting out with their teen? Am half way

> > through reading McClandess' book so learning as much as I can.

> > Thanks in advance!

> >

> > Alison

> >

> > Sent from my iPhone

> >

>

June 27, 2010

Initially many of the ASD kids can only sit still for a few seconds at a time, irrespective of age.. Mandi on this group has a teenage son who has just begun this therapy... even though she has only managed a few minutes a day, in brief snatches, she has seen some gains.

Her son has recently managed to sit still for the whole first exercise cycle which is about 1 hour ( five minutes massage and five minutes rest)

I love TST as the results are totally predictable.. I like it too because if it is done as an early therapy, it can potentially save you thousands of pounds in supps and other programmes.

If you look on the files section of this group there is a file for TST and you can read the experiences of other ASD children there and a fully explanation from on how the therapy works.

We have been on our very expensive journey for nearly 17 years... and many many thousands of pounds... and have had more gains with TST than with any other programme.... because it has tackled the source of the problems rather than playing with the symptoms. I am especially enthuisiastic about this treatment as it teaches the body to become healthy and strong with the support of very limited supplements and a truly nutritious diet.

When kids breathe properly their bodies remain alkali, they do not have yeast overgrowthe and they do not have parasitic overload.. They sleep properly and develop properly.. The brain has the capacity to heal if it gets sufficient oxygen and real nutrition.

If you need to understand more about TST and ASD kids, I suggest you send an e:mail to Scotson at Advance and she can respond directly to your questions...

Best Wishes

Tracey

On Sun, Jun 27, 2010 at 1:27 PM, Alison <awiles84@...> wrote:

Hi Tracey, thanks for the welcome and the information I will have a read on their website, looks very interesting although I can't see my son sitting still for very long! Would you know what success rate they have had with teenagers with ASD?

Alison> > >

> >> > Hello This is my first post. Our son is 14 and has ASD, seizures and OCD.> > We are taking him to a DAN doctor here in the UK for the first time next> > week. Is there any advice you can give me to prepare for the assessment and

> > is there anyone else who is starting out with their teen? Am half way> > through reading McClandess' book so learning as much as I can.> > Thanks in advance!> >> > Alison

> >> > Sent from my iPhone> > > >>

June 27, 2010

Dear Tracey or others,

May I ask you what improvements you have seen while doing the therapy

and when did you see these results?

Best wishes,

Hannah

> > >

> > > >

> > > > Hello This is my first post. Our son is 14 and has ASD, seizures and

> > OCD.

> > > > We are taking him to a DAN doctor here in the UK for the first time

> > next

> > > > week. Is there any advice you can give me to prepare for the assessment

> > and

> > > > is there anyone else who is starting out with their teen? Am half way

> > > > through reading McClandess' book so learning as much as I

> > can.

> > > > Thanks in advance!

> > > >

> > > > Alison

> > > >

> > > > Sent from my iPhone

> > > >

> > >

> >

>

June 27, 2010

Hi Hannah

This is what happened within the first three months.

The big things we noticed were much more energy, more mental alertness. She slimmed down 1.5 stone in first three months.. her body tone improved and in the first three months she had a lot less seizures.

Her stress levels reduced and the biggest thing for us was she began crying.. she has never cried through emotion before ( she was 16 when we begun).

Best Wishes

On Sun, Jun 27, 2010 at 3:13 PM, Hannah <kersten123@...> wrote:

Dear Tracey or others,May I ask you what improvements you have seen while doing the therapyand when did you see these results?Best wishes,Hannah > > >> > > >> > > >> > > > Hello This is my first post. Our son is 14 and has ASD, seizures and

> > OCD.> > > > We are taking him to a DAN doctor here in the UK for the first time> > next> > > > week. Is there any advice you can give me to prepare for the assessment

> > and> > > > is there anyone else who is starting out with their teen? Am half way> > > > through reading McClandess' book so learning as much as I> > can.

> > > > Thanks in advance!> > > >> > > > Alison> > > >> > > > Sent from my iPhone> > > >> > > >> > >

> >> > > >>

June 27, 2010

Thanks Tracey,

We've done TST for three months and we've got a lot less results

till now. just that my son started dreaming. Last week we've been to Advance for

the second time and I noticed that I was pushing too hard. maybe because of

that.

Hannah.

> > > > >

> > > > > >

> > > > > > Hello This is my first post. Our son is 14 and has ASD, seizures

> > and

> > > > OCD.

> > > > > > We are taking him to a DAN doctor here in the UK for the first time

> > > > next

> > > > > > week. Is there any advice you can give me to prepare for the

> > assessment

> > > > and

> > > > > > is there anyone else who is starting out with their teen? Am half

> > way

> > > > > > through reading McClandess' book so learning as much as

> > I

> > > > can.

> > > > > > Thanks in advance!

> > > > > >

> > > > > > Alison

> > > > > >

> > > > > > Sent from my iPhone

> > > > > >

> > > > >

> > > >

> > >

> >

>

June 27, 2010

Hi Hannah

Our special babes each have their own speed and healing capacity.. Tatijana is essentially NT with complex seizures... so our starting point may be different and you son's breathing deficiencies may be higher.

Tash at the age of nearly 18 has done all her growing and things, so her body is not using as much energy to grow or face the stresses of puberty etc... We have been lucky too that Tatijana as a very rules based black and white thinker has had total dedicated responsibility for her TST..

I wonder if a lot of the changes at this stage are more about improved muscle tone,,, and the fact that he is now REM sleeping is a huge breakthrough.. it allows his body to regenerate at night and it allows his body to have deep and necessary sleep.. We started off with Tatijana already having good sleep... so your first HUGE leap forward has been to develop proper sleep... and this is a significant foundation stone for further progress.

it is easy to press a little too hard in the early days... and there will still be some gains even if the pressure is a little too hard... by reducing the pressure you effectively get the tiny capillaries to be compressed very gently which gives them a work out, strenghtens them and persuades them to expand and create further capillaries... which allows for more blood flow to go around the body...and the diaphragm to become stronger.... so already you are on the way ..... with many more rainbow moments to come.... I am sure.

Tracey

On Sun, Jun 27, 2010 at 5:50 PM, Hannah <kersten123@...> wrote:

Thanks Tracey,We've done TST for three months and we've got a lot less resultstill now. just that my son started dreaming. Last week we've been to Advance for the second time and I noticed that I was pushing too hard. maybe because of that.

Hannah.

> > > > >> > > > > >> > > > > >> > > > > > Hello This is my first post. Our son is 14 and has ASD, seizures> > and> > > > OCD.

> > > > > > We are taking him to a DAN doctor here in the UK for the first time> > > > next> > > > > > week. Is there any advice you can give me to prepare for the

> > assessment> > > > and> > > > > > is there anyone else who is starting out with their teen? Am half> > way> > > > > > through reading McClandess' book so learning as much as

> > I> > > > can.> > > > > > Thanks in advance!> > > > > >> > > > > > Alison> > > > > >> > > > > > Sent from my iPhone

> > > > > >> > > > > >> > > > >> > > >> > > >> > > >> > >> >> > > >

>

June 28, 2010

On 27 June 2010 11:03, Alison Wiles <awiles84@...> wrote:

> Hello This is my first post. Our son is 14 and has ASD, seizures and OCD. We

are taking him to a DAN doctor here in the UK for the first time next week. Is

there any advice you can give me to prepare for the assessment and is there

anyone else who is starting out with their teen? Am half way through reading

McClandess' book so learning as much as I can. Thanks in advance!

** keep note of the behavioural issues you son has. Also mention any

physical or sensory issues he may have. Mention allergies that you

know he has and any supplements or interventions you have

tried/willing to try.

Is he anywhere near bristol? im asking as im looking for one myself

for my aspergers.

--

is

June 28, 2010

On 27 June 2010 11:27, Tracey Clewer <thelifechangers@...> wrote:

Hi Alison

It is worth looking at the amazing work Scotson is doing with her TST (The Scotson Technique) therapy... she believes that at the heart of all neurological issues, including epilepsy, ASD, CP etc, lies an immature breathing mechanism and an inability for the body to maintain good oxygen levels..

Once the breathing, improved diaphragm and lungs are in place, improvements can happen more easily.and many of the more recognised ASD interventions have the potential to produce more gains without the risk of reaching a plateau.

... With seizures.. if too much is done too quickly, it can aggravate the seizure inclination.** i know that fish oils cannot be used by epileptics. Also that heavy metal poisoning can cause seizures.

Arsenic, lead, manganese, thallium and tin can be possible sources. http://www.danasview.net/metals.htm is an excellentsite and that page mentions the symptoms of various types of metal posioning.

Best wishes and welcome to the group

Same from me as well, good luck with the DAN!-- is

June 28, 2010

On 27 June 2010 11:27, Tracey Clewer <thelifechangers@...> wrote:

Hi Alison

It is worth looking at the amazing work Scotson is doing with her TST (The Scotson Technique) therapy... she believes that at the heart of all neurological issues, including epilepsy, ASD, CP etc, lies an immature breathing mechanism and an inability for the body to maintain good oxygen levels..

Once the breathing, improved diaphragm and lungs are in place, improvements can happen more easily.and many of the more recognised ASD interventions have the potential to produce more gains without the risk of reaching a plateau.

... With seizures.. if too much is done too quickly, it can aggravate the seizure inclination.** i know that fish oils cannot be used by epileptics. Also that heavy metal poisoning can cause seizures.

Arsenic, lead, manganese, thallium and tin can be possible sources. http://www.danasview.net/metals.htm is an excellentsite and that page mentions the symptoms of various types of metal posioning.

Best wishes and welcome to the group

Same from me as well, good luck with the DAN!-- is

June 28, 2010

On 27 June 2010 13:42, Tracey Clewer <thelifechangers@...> wrote:

Initially many of the ASD kids can only sit still for a few seconds at a time, irrespective of age.. Mandi on this group has a teenage son who has just begun this therapy... even though she has only managed a few minutes a day, in brief snatches, she has seen some gains.

Her son has recently managed to sit still for the whole first exercise cycle which is about 1 hour ( five minutes massage and five minutes rest)

I love TST as the results are totally predictable.. I like it too because if it is done as an early therapy, it can potentially save you thousands of pounds in supps and other programmes.

Does that mean it's not worth it for a 30 something like myself to try on myself?

If you look on the files section of this group there is a file for TST and you can read the experiences of other ASD children there and a fully explanation from on how the therapy works.

We have been on our very expensive journey for nearly 17 years... and many many thousands of pounds... and have had more gains with TST than with any other programme.... because it has tackled the source of the problems rather than playing with the symptoms. I am especially enthuisiastic about this treatment as it teaches the body to become healthy and strong with the support of very limited supplements and a truly nutritious diet.

When kids breathe properly their bodies remain alkali, they do not have yeast overgrowthe and they do not have parasitic overload.. They sleep properly and develop properly.. The brain has the capacity to heal if it gets sufficient oxygen and real nutrition.

** That sounds great and i hope i can try this therapy soon on myself if it's worth it for an older autistic.

If you need to understand more about TST and ASD kids, I suggest you send an e:mail to Scotson at Advance and she can respond directly to your questions...

Cheers tracy-- is

June 28, 2010