Re: New - & Questions (of course!)

[Guest guest]

OOOOOOOO! Gail, do let me know her details. We live in Putney so Southfields is right next door, so to speak. Would be much easier than a trip to Guildford!

Thanks so much!

Darla

In a message dated 05/06/2006 22:25:15 GMT Standard Time, gail@... writes:

Hi DarlaI also live in SW London (across the river from Chelsea and Westminster). My son has/had vestibular/visual/auditory problems, he still has some auditory processing issues but has made good progress. We see a lady recommended by a friend whose ASD son made similarly good progress. She is now retired from full time work but still sees children privately, is a Physio by trade but knows her stuff about Sensory Intgration(SI). She has always worked in paediatrics in the field of SI. She lived out in Canada years ago and first got into SI out there. She is leagues ahead of anyone else I have come across re SI. She lives in Southfields.Let me know if you want more infoGail

[Guest guest]

OOOOOOOO! Gail, do let me know her details. We live in Putney so Southfields is right next door, so to speak. Would be much easier than a trip to Guildford!

Thanks so much!

Darla

In a message dated 05/06/2006 22:25:15 GMT Standard Time, gail@... writes:

Hi DarlaI also live in SW London (across the river from Chelsea and Westminster). My son has/had vestibular/visual/auditory problems, he still has some auditory processing issues but has made good progress. We see a lady recommended by a friend whose ASD son made similarly good progress. She is now retired from full time work but still sees children privately, is a Physio by trade but knows her stuff about Sensory Intgration(SI). She has always worked in paediatrics in the field of SI. She lived out in Canada years ago and first got into SI out there. She is leagues ahead of anyone else I have come across re SI. She lives in Southfields.Let me know if you want more infoGail

[Guest guest]

OOOOOOOO! Gail, do let me know her details. We live in Putney so Southfields is right next door, so to speak. Would be much easier than a trip to Guildford!

Thanks so much!

Darla

In a message dated 05/06/2006 22:25:15 GMT Standard Time, gail@... writes:

Hi DarlaI also live in SW London (across the river from Chelsea and Westminster). My son has/had vestibular/visual/auditory problems, he still has some auditory processing issues but has made good progress. We see a lady recommended by a friend whose ASD son made similarly good progress. She is now retired from full time work but still sees children privately, is a Physio by trade but knows her stuff about Sensory Intgration(SI). She has always worked in paediatrics in the field of SI. She lived out in Canada years ago and first got into SI out there. She is leagues ahead of anyone else I have come across re SI. She lives in Southfields.Let me know if you want more infoGail

[Guest guest]

Hi Darla

Her name is Ann Sumra. Will send you her phone number offline. We

must be nearly neighbours - I'm just into SW18, if you are coming to

see Ann please contact me and call in. I am just down the road from

her.

Saw you had another reply from someone in SW15 - we should get

together for a cuppa. Will post and see if she wants to link up.

Bests

Gail

>

>

> OOOOOOOO! Gail, do let me know her details. We live in Putney

so

> Southfields is right next door, so to speak. Would be much easier

than a trip to

> Guildford!

>

> Thanks so much!

> Darla

>

> In a message dated 05/06/2006 22:25:15 GMT Standard Time,

gail@...

> writes:

>

> Hi Darla

>

> I also live in SW London (across the river from Chelsea and

> Westminster). My son has/had vestibular/visual/auditory problems,

he

> still has some auditory processing issues but has made good

> progress. We see a lady recommended by a friend whose ASD son

made

> similarly good progress. She is now retired from full time work

but

> still sees children privately, is a Physio by trade but knows her

> stuff about Sensory Intgration(SI). She has always worked in

> paediatrics in the field of SI. She lived out in Canada years ago

> and first got into SI out there. She is leagues ahead of anyone

else

> I have come across re SI. She lives in Southfields.

> Let me know if you want more info

> Gail

>

[Guest guest]

Hi Darla

Her name is Ann Sumra. Will send you her phone number offline. We

must be nearly neighbours - I'm just into SW18, if you are coming to

see Ann please contact me and call in. I am just down the road from

her.

Saw you had another reply from someone in SW15 - we should get

together for a cuppa. Will post and see if she wants to link up.

Bests

Gail

>

>

> OOOOOOOO! Gail, do let me know her details. We live in Putney

so

> Southfields is right next door, so to speak. Would be much easier

than a trip to

> Guildford!

>

> Thanks so much!

> Darla

>

> In a message dated 05/06/2006 22:25:15 GMT Standard Time,

gail@...

> writes:

>

> Hi Darla

>

> I also live in SW London (across the river from Chelsea and

> Westminster). My son has/had vestibular/visual/auditory problems,

he

> still has some auditory processing issues but has made good

> progress. We see a lady recommended by a friend whose ASD son

made

> similarly good progress. She is now retired from full time work

but

> still sees children privately, is a Physio by trade but knows her

> stuff about Sensory Intgration(SI). She has always worked in

> paediatrics in the field of SI. She lived out in Canada years ago

> and first got into SI out there. She is leagues ahead of anyone

else

> I have come across re SI. She lives in Southfields.

> Let me know if you want more info

> Gail

>

[Guest guest]

Hi Darla

Her name is Ann Sumra. Will send you her phone number offline. We

must be nearly neighbours - I'm just into SW18, if you are coming to

see Ann please contact me and call in. I am just down the road from

her.

Saw you had another reply from someone in SW15 - we should get

together for a cuppa. Will post and see if she wants to link up.

Bests

Gail

>

>

> OOOOOOOO! Gail, do let me know her details. We live in Putney

so

> Southfields is right next door, so to speak. Would be much easier

than a trip to

> Guildford!

>

> Thanks so much!

> Darla

>

> In a message dated 05/06/2006 22:25:15 GMT Standard Time,

gail@...

> writes:

>

> Hi Darla

>

> I also live in SW London (across the river from Chelsea and

> Westminster). My son has/had vestibular/visual/auditory problems,

he

> still has some auditory processing issues but has made good

> progress. We see a lady recommended by a friend whose ASD son

made

> similarly good progress. She is now retired from full time work

but

> still sees children privately, is a Physio by trade but knows her

> stuff about Sensory Intgration(SI). She has always worked in

> paediatrics in the field of SI. She lived out in Canada years ago

> and first got into SI out there. She is leagues ahead of anyone

else

> I have come across re SI. She lives in Southfields.

> Let me know if you want more info

> Gail

>

[Guest guest]

Hi Darla

We use rice milk from ASda - not rice dream (too many additives) and

supplement calcium from nutricentre. The thing is if he has leaky

gut ( probable) then normal milk will make matters worse.

Our DAN dr is in the States. Alot of people on this site use Dr

Heard or Muscroft - I'm sure someone can give you details.

There are so many autistic kids now that good DAN dr's get very

booked with many months waiting lists.It's best to go on

recommendations - our 1st experience with a DAN dr in LOndon was

very expensive and disastrous - hence the States.

It's a really horrible time for you but starting with your son being

so young is a good thing.

All the best

Peta

-

- In Autism Treatment , rexel45@... wrote:

>

>

> Thanks, Peta! I would start the GF/CF diet but can't chew

properly.

> He still drinks so much milk. I'm hoping that the SLT will help

us with that.

> I'm also buying an electronic toothbrush to stimulate the side to

side

> motion of his tongue. Just chewing one bite of broccoli can take

him up to 5

> minutes because he can't move it in his mouth. He kind of sucks

it down.

>

>

> Where can I find a DAN dr? Any recommendations in the London

area? I've

> found another Dr who is up on all the biomed stuff but she's not

DAN trained.

> She is however, treating another gut kid (ASD) who lives in our

> neighbourhood.

>

> Thanks, Peta.

> Darla

>

> In a message dated 05/06/2006 21:53:58 GMT Standard Time,

> peta3366@... writes:

>

> Hi Darla

> If I were you I would start the gf/cf diet straight away. We did

> with Charlie at 3 when we got the diagnosis - he didn't eat

anything

> else but bread and milk so we weren't restricting him. Within a

week

> he ate a roast dinner and it made an enormous difference to

> awareness and behavior - the younger you start with the diet the

> better. I would also get your name on the waiting list of a good

DAN

> dr. Our dr is fab but they have a long waiting list. He says they

> fight over 2 year olds because most things seem to work with

them.If

> he needs chelating then the sooner you start with a good dr then

the

> sooner you can get him better and it could save you years of

> heartache and pain. We didn't start with Charlie until he was

nearly

> 4 yrs old( he is now nearly 5) and the improvements we have seen

in

> the last year have been incredible. I really wish I had started

at

> two. I'm afraid I am one of those people who does as much as I

can

> straight away. At first I didn't believe that DAN dr's could

really

> help - I was so wrong. Unfortunately the only thing that makes me

> happy is getting Charlie better. This site is great and everyone

is

> so helpful.

> Good luck

> Peta-

>

[Guest guest]

Hi Darla

We use rice milk from ASda - not rice dream (too many additives) and

supplement calcium from nutricentre. The thing is if he has leaky

gut ( probable) then normal milk will make matters worse.

Our DAN dr is in the States. Alot of people on this site use Dr

Heard or Muscroft - I'm sure someone can give you details.

There are so many autistic kids now that good DAN dr's get very

booked with many months waiting lists.It's best to go on

recommendations - our 1st experience with a DAN dr in LOndon was

very expensive and disastrous - hence the States.

It's a really horrible time for you but starting with your son being

so young is a good thing.

All the best

Peta

-

- In Autism Treatment , rexel45@... wrote:

>

>

> Thanks, Peta! I would start the GF/CF diet but can't chew

properly.

> He still drinks so much milk. I'm hoping that the SLT will help

us with that.

> I'm also buying an electronic toothbrush to stimulate the side to

side

> motion of his tongue. Just chewing one bite of broccoli can take

him up to 5

> minutes because he can't move it in his mouth. He kind of sucks

it down.

>

>

> Where can I find a DAN dr? Any recommendations in the London

area? I've

> found another Dr who is up on all the biomed stuff but she's not

DAN trained.

> She is however, treating another gut kid (ASD) who lives in our

> neighbourhood.

>

> Thanks, Peta.

> Darla

>

> In a message dated 05/06/2006 21:53:58 GMT Standard Time,

> peta3366@... writes:

>

> Hi Darla

> If I were you I would start the gf/cf diet straight away. We did

> with Charlie at 3 when we got the diagnosis - he didn't eat

anything

> else but bread and milk so we weren't restricting him. Within a

week

> he ate a roast dinner and it made an enormous difference to

> awareness and behavior - the younger you start with the diet the

> better. I would also get your name on the waiting list of a good

DAN

> dr. Our dr is fab but they have a long waiting list. He says they

> fight over 2 year olds because most things seem to work with

them.If

> he needs chelating then the sooner you start with a good dr then

the

> sooner you can get him better and it could save you years of

> heartache and pain. We didn't start with Charlie until he was

nearly

> 4 yrs old( he is now nearly 5) and the improvements we have seen

in

> the last year have been incredible. I really wish I had started

at

> two. I'm afraid I am one of those people who does as much as I

can

> straight away. At first I didn't believe that DAN dr's could

really

> help - I was so wrong. Unfortunately the only thing that makes me

> happy is getting Charlie better. This site is great and everyone

is

> so helpful.

> Good luck

> Peta-

>

[Guest guest]

Rice milk can be a disaster if Clostrida infection is involved, as it

feeds on rice. An OATs test - Organic Acid Analysis usually shows if

there is any Clostrida in the gut.

If you cannot get on any UK DAN doc list, Natasha Cambell McBride in

Cambridge specialises in ASD kids/diet issues (she specialises in

SCDiet, which was godsent for us), not sure if she prescribes anything

like mb12...

Natasa

> >

> >

> > Thanks, Peta! I would start the GF/CF diet but can't chew

> properly.

> > He still drinks so much milk. I'm hoping that the SLT will help

> us with that.

> > I'm also buying an electronic toothbrush to stimulate the side to

> side

> > motion of his tongue. Just chewing one bite of broccoli can take

> him up to 5

> > minutes because he can't move it in his mouth. He kind of sucks

> it down.

> >

> >

> > Where can I find a DAN dr? Any recommendations in the London

> area? I've

> > found another Dr who is up on all the biomed stuff but she's not

> DAN trained.

> > She is however, treating another gut kid (ASD) who lives in our

> > neighbourhood.

> >

> > Thanks, Peta.

> > Darla

> >

> > In a message dated 05/06/2006 21:53:58 GMT Standard Time,

> > peta3366@ writes:

> >

> > Hi Darla

> > If I were you I would start the gf/cf diet straight away. We did

> > with Charlie at 3 when we got the diagnosis - he didn't eat

> anything

> > else but bread and milk so we weren't restricting him. Within a

> week

> > he ate a roast dinner and it made an enormous difference to

> > awareness and behavior - the younger you start with the diet the

> > better. I would also get your name on the waiting list of a good

> DAN

> > dr. Our dr is fab but they have a long waiting list. He says they

> > fight over 2 year olds because most things seem to work with

> them.If

> > he needs chelating then the sooner you start with a good dr then

> the

> > sooner you can get him better and it could save you years of

> > heartache and pain. We didn't start with Charlie until he was

> nearly

> > 4 yrs old( he is now nearly 5) and the improvements we have seen

> in

> > the last year have been incredible. I really wish I had started

> at

> > two. I'm afraid I am one of those people who does as much as I

> can

> > straight away. At first I didn't believe that DAN dr's could

> really

> > help - I was so wrong. Unfortunately the only thing that makes me

> > happy is getting Charlie better. This site is great and everyone

> is

> > so helpful.

> > Good luck

> > Peta-

> >

>

[Guest guest]

Rice milk can be a disaster if Clostrida infection is involved, as it

feeds on rice. An OATs test - Organic Acid Analysis usually shows if

there is any Clostrida in the gut.

If you cannot get on any UK DAN doc list, Natasha Cambell McBride in

Cambridge specialises in ASD kids/diet issues (she specialises in

SCDiet, which was godsent for us), not sure if she prescribes anything

like mb12...

Natasa

> >

> >

> > Thanks, Peta! I would start the GF/CF diet but can't chew

> properly.

> > He still drinks so much milk. I'm hoping that the SLT will help

> us with that.

> > I'm also buying an electronic toothbrush to stimulate the side to

> side

> > motion of his tongue. Just chewing one bite of broccoli can take

> him up to 5

> > minutes because he can't move it in his mouth. He kind of sucks

> it down.

> >

> >

> > Where can I find a DAN dr? Any recommendations in the London

> area? I've

> > found another Dr who is up on all the biomed stuff but she's not

> DAN trained.

> > She is however, treating another gut kid (ASD) who lives in our

> > neighbourhood.

> >

> > Thanks, Peta.

> > Darla

> >

> > In a message dated 05/06/2006 21:53:58 GMT Standard Time,

> > peta3366@ writes:

> >

> > Hi Darla

> > If I were you I would start the gf/cf diet straight away. We did

> > with Charlie at 3 when we got the diagnosis - he didn't eat

> anything

> > else but bread and milk so we weren't restricting him. Within a

> week

> > he ate a roast dinner and it made an enormous difference to

> > awareness and behavior - the younger you start with the diet the

> > better. I would also get your name on the waiting list of a good

> DAN

> > dr. Our dr is fab but they have a long waiting list. He says they

> > fight over 2 year olds because most things seem to work with

> them.If

> > he needs chelating then the sooner you start with a good dr then

> the

> > sooner you can get him better and it could save you years of

> > heartache and pain. We didn't start with Charlie until he was

> nearly

> > 4 yrs old( he is now nearly 5) and the improvements we have seen

> in

> > the last year have been incredible. I really wish I had started

> at

> > two. I'm afraid I am one of those people who does as much as I

> can

> > straight away. At first I didn't believe that DAN dr's could

> really

> > help - I was so wrong. Unfortunately the only thing that makes me

> > happy is getting Charlie better. This site is great and everyone

> is

> > so helpful.

> > Good luck

> > Peta-

> >

>

[Guest guest]

Hi -

As far as changing his milk, Peta and Natatsa - I'm so reluctant to do it precisely because of what you say Natasa - I may move him from the frying pan to the fire so to speak and since he's been so sick I've not been able to evaluate any of the changes anyway. He's doing better physically now than he ever has in his life so I am finally able to evaluate changes. The primary reason I'm not willing to change his formula is that he had stool/blood tests run while on this formula. No malabsorption, no anemia. So given those two things, I'm sticking with it until I can get advice from a knowledgeable practioner following further testing.

Dr McBride has been recommended to us and I've ordered a copy of her book. Two of my "new" friends have been to see her and recommended her. But one has been to see her and told me that given 's restricted dietary intake it probably would be best to begin working with a local practioner, get his gut as healed as we can, get his chewing/swallowing skills up to par and then spend the money to see Dr. McBride.

Thanks for the recommendations, I'm filing them away for the when we do change his formula.

Kind Regards,

Darla

In a message dated 06/06/2006 18:15:14 GMT Standard Time, neno@... writes:

Rice milk can be a disaster if Clostrida infection is involved, as itfeeds on rice. An OATs test - Organic Acid Analysis usually shows ifthere is any Clostrida in the gut.If you cannot get on any UK DAN doc list, Natasha Cambell McBride inCambridge specialises in ASD kids/diet issues (she specialises inSCDiet, which was godsent for us), not sure if she prescribes anythinglike mb12...Natasa

[Guest guest]

In a message dated 06/06/2006 09:04:55 GMT Daylight Time, rexel45@... writes:

I sprinkled the enzymes in some yoghurt and he ate that but it just went so thin so quickly! Yuck! I'm going to try mixing it in some juice and syringing it into his mouth before each bottle. Does it matter how long it stays in the juice? Could I take a small bottle of juice/enzyme mix with me to dose out while we are out or would it be better to mix it immediately before giving it? I'm assuming there's no biodegradation (or digestion) happening with juice, right?

>>>They are good in cold juice for 4 hours with some ice cubdes or pop the whoel bottle in freezer for a bit before you go out.

Dome folks do the yoghurt trick - very quickly - put a little on a teaspoon, lightening fast add mor eyoghurt on the top and down the hatch before it goes all wateray and falls off the spoon LOL - that save him from a whole pot of watery yoghurt

Mandi x

[Guest guest]

Thanks for all the info this morning, Mandi!

>>>>I sprinkled the enzymes in some yoghurt and he ate that but it just went so thin so quickly! Yuck! I'm going to try mixing it in some juice and syringing it into his mouth before each bottle. Does it matter how long it stays in the juice? Could I take a small bottle of juice/enzyme mix with me to dose out while we are out or would it be better to mix it immediately before giving it? I'm assuming there's no biodegradation (or digestion) happening with juice, right? >>>>

>>>They are good in cold juice for 4 hours with some ice cubdes or pop the whoel bottle in freezer for a bit before you go out.

Dome folks do the yoghurt trick - very quickly - put a little on a teaspoon, lightening fast add mor eyoghurt on the top and down the hatch before it goes all wateray and falls off the spoon LOL - that save him from a whole pot of watery yoghurt>>>

Oh, Mandi, if you can do this speedy feeding trick with *my* son then you win the prize!!! I have to chase him around the house with a spoon, stand on my head, make funny faces, SING, play videos on my mobile (of him)....just to get the yoghurt from a spoon down the hatch...unless, of course, there is a feeding therapist here, in which case he will feed from a spoon like he's been doing it every day and hey, what IS mum on about? LOL.

The juice thing, however, that WILL work. That means I can take the enzymes with me and syringe them. That's GREAT!

Thanks so much,

Darla