Re: 1 step forward, 2 steps back

[Guest guest]

Have you tried Melatonin to help him sleep?

Nathalie

From: West

Sent: Monday, September 13, 2010 1:13 PM

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

,

I do not have 100% solutions for you. We go through the sleep deprivation in my

house too. My 4 year old will not sleep through the night so I wake up several

times through the night to put him back to bed. What he tends to seek is body

warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

The occupational therapist has suggested a weighted blanket for my son, we are

still waiting on our order. The other things they suggested are heavy work

before bed time such as pulling and carrying heavy stuff. I have no idea how

old your child is. My son also does the putting his hand in my shirt and I

constantly take his hand away, he does it more for attention seeking. My son

also benefits from deep pressure all over his body every few hours during the

day, he likes to get squeezes through out the day. I hope this helps a bit at

least. I am with you there, the sleep deprivation works a number on our

bodies. D

Does your son still take naps?, if he does, you may want to cut it out. I know

that has helped a great deal in our household. If my son takes a nap, it has to

be before 2pm and only for about 30minutes. Stay strong even in the midst of

not seeing the light at the end of the tunnel. I have not gone the DAN route

yet because the only one I thought of seeing was not completely honest. I felt

it was too money driven. Good luck.

________________________________

From: West <shanwest@...>

< >

Sent: Mon, September 13, 2010 2:13:16 PM

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

We put mattress warmers on the bed for both our boys, one asd and one nt.  Now

they sleep thru even the coldest nights, and if they kick the covers off, they

are still warm.

nancy j

a child is diagnosed with

asd every 20 seconds

From: Henrietta Osodi <onyeanwuli@...>

Subject: Re: 1 step forward, 2 steps back

Date: Monday, September 13, 2010, 1:25 PM

 

,

I do not have 100% solutions for you. We go through the sleep deprivation in my

house too. My 4 year old will not sleep through the night so I wake up several

times through the night to put him back to bed. What he tends to seek is body

warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

The occupational therapist has suggested a weighted blanket for my son, we are

still waiting on our order. The other things they suggested are heavy work

before bed time such as pulling and carrying heavy stuff. I have no idea how

old your child is. My son also does the putting his hand in my shirt and I

constantly take his hand away, he does it more for attention seeking. My son

also benefits from deep pressure all over his body every few hours during the

day, he likes to get squeezes through out the day. I hope this helps a bit at

least. I am with you there, the sleep deprivation works a number on our

bodies. D

Does your son still take naps?, if he does, you may want to cut it out. I know

that has helped a great deal in our household. If my son takes a nap, it has to

be before 2pm and only for about 30minutes. Stay strong even in the midst of

not seeing the light at the end of the tunnel. I have not gone the DAN route

yet because the only one I thought of seeing was not completely honest. I felt

it was too money driven. Good luck.

________________________________

From: West <shanwest@...>

< >

Sent: Mon, September 13, 2010 2:13:16 PM

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

 

i definitely agree about too much sleep in the day.

also look into 5htp as a precursor to melatonin. up to 200mg a day.

________________________________

From: nancy cook <endofautism@...>

Sent: Mon, September 13, 2010 10:39:07 PM

Subject: Re: 1 step forward, 2 steps back

 

We put mattress warmers on the bed for both our boys, one asd and one nt.  Now

they sleep thru even the coldest nights, and if they kick the covers off, they

are still warm.

nancy j

a child is diagnosed with

asd every 20 seconds

From: Henrietta Osodi <onyeanwuli@...>

Subject: Re: 1 step forward, 2 steps back

Date: Monday, September 13, 2010, 1:25 PM

 

,

I do not have 100% solutions for you. We go through the sleep deprivation in my

house too. My 4 year old will not sleep through the night so I wake up several

times through the night to put him back to bed. What he tends to seek is body

warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

The occupational therapist has suggested a weighted blanket for my son, we are

still waiting on our order. The other things they suggested are heavy work

before bed time such as pulling and carrying heavy stuff. I have no idea how

old your child is. My son also does the putting his hand in my shirt and I

constantly take his hand away, he does it more for attention seeking. My son

also benefits from deep pressure all over his body every few hours during the

day, he likes to get squeezes through out the day. I hope this helps a bit at

least. I am with you there, the sleep deprivation works a number on our

bodies. D

Does your son still take naps?, if he does, you may want to cut it out. I know

that has helped a great deal in our household. If my son takes a nap, it has to

be before 2pm and only for about 30minutes. Stay strong even in the midst of

not seeing the light at the end of the tunnel. I have not gone the DAN route

yet because the only one I thought of seeing was not completely honest. I felt

it was too money driven. Good luck.

________________________________

From: West <shanwest@...>

< >

Sent: Mon, September 13, 2010 2:13:16 PM

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

From: shanwest@...

Date: Mon, 13 Sep 2010 11:13:16 -0700

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

Yes, he gets 3mg before bed and then another 1.5 at midnight if he's still up,

or in the middle of the night if he wakes up.

----- Receiving the following content -----

From: NL

Receiver:

Time: 2010-09-13, 12:46:55

Subject: Re: 1 step forward, 2 steps back

>Have you tried Melatonin to help him sleep?

>

>Nathalie

>

>

>From: West

>Sent: Monday, September 13, 2010 1:13 PM

>

>Subject: 1 step forward, 2 steps back

>

>

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>

>

>

>

>

[Guest guest]

The episode was called " The boy who bit "

From: shanwest@...

Date: Mon, 13 Sep 2010 11:13:16 -0700

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

He doesn't nap through the day at all. And he can't have 5htp because of the

serotonin imbalance. It would make it worse.

----- Receiving the following content -----

From: Yarkoni

Receiver:

Time: 2010-09-13, 13:46:15

Subject: Re: 1 step forward, 2 steps back

>¡¡

>i definitely agree about too much sleep in the day.

>also look into 5htp as a precursor to melatonin. up to 200mg a day.

>

>

>

>

>________________________________

>From: nancy cook

>

>Sent: Mon, September 13, 2010 10:39:07 PM

>Subject: Re: 1 step forward, 2 steps back

>

>¡¡

>We put mattress warmers on the bed for both our boys, one asd and one nt.¡¡ Now

>they sleep thru even the coldest nights, and if they kick the covers off, they

>are still warm.

>

>nancy j

>

>a child is diagnosed with

>

>asd every 20 seconds

>

>

>

>From: Henrietta Osodi

>Subject: Re: 1 step forward, 2 steps back

>

>Date: Monday, September 13, 2010, 1:25 PM

>

>¡¡

>

>,

>

>I do not have 100% solutions for you. We go through the sleep deprivation in my

>

>house too. My 4 year old will not sleep through the night so I wake up several

>

>times through the night to put him back to bed. What he tends to seek is body

>

>warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

>

>The occupational therapist has suggested a weighted blanket for my son, we are

>

>still waiting on our order. The other things they suggested are heavy work

>

>before bed time such as pulling and carrying heavy stuff. I have no idea how

>

>old your child is. My son also does the putting his hand in my shirt and I

>

>constantly take his hand away, he does it more for attention seeking. My son

>

>also benefits from deep pressure all over his body every few hours during the

>

>day, he likes to get squeezes through out the day. I hope this helps a bit at

>

>least. I am with you there, the sleep deprivation works a number on our

>

>bodies. D

>

>Does your son still take naps?, if he does, you may want to cut it out. I know

>

>that has helped a great deal in our household. If my son takes a nap, it has to

>

>be before 2pm and only for about 30minutes. Stay strong even in the midst of

>

>not seeing the light at the end of the tunnel. I have not gone the DAN route

>

>yet because the only one I thought of seeing was not completely honest. I felt

>

>it was too money driven. Good luck.

>

>________________________________

>

>From: West

>

>

>

>Sent: Mon, September 13, 2010 2:13:16 PM

>

>Subject: 1 step forward, 2 steps back

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

>

>and it was awful. The DAN doc says it's the worst she's seen. She called the

lab

>

>

>(she has a friend there) and he said it was one of the worst he'd seen. So, now

>

>I'm looking at it going " What now? " and unfortunately, so are they. The theory

>

>is that he's got a food allergy that is enflaming him so badly that his gut is

>

>leaking terribly - so for that, we're doing an elimination diet. The serotonin

>

>markers are nuts. He's terribly toxic from solvents and plastics, phthalates

>

>being the worst. There's no sign of yeast or bacteria or viruses. That's the

>

>only good thing.

>

>But his symptoms are so out of control and nothing seems to be working. He's

got

>

>

>a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

>

>minute he's awake. And it varies between conversation volume and LOUD and

>

>SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

>

>night, he slept from 3 to 9. He's obsessed with putting his fingers into my

>

>shirt. He's so hyper and inattentive that he can't even sit still long enough

to

>

>

>eat. He has no interest in anything other than occasionally stacking cards or

>

>cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

>

>about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

>

>most of the time. The only thing that makes any of it better is if we go

>

>someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

>

>And better for a while at home afterward. Weird, I know.

>

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

>

>crazy.

>

>

>

>

[Guest guest]

The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

Thanks for the ideas.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 14:00:58

Subject: RE: 1 step forward, 2 steps back

>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 11:13:16 -0700

>Subject: 1 step forward, 2 steps back

>

>

>

>

>

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>

>

>

>

>

[Guest guest]

I'd love to wath it too. Can you post the date and time if you find it.

thanks!

From: Burleson <lesburleson@...>

Subject: RE: 1 step forward, 2 steps back

Date: Monday, September 13, 2010, 2:00 PM

Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

From: shanwest@...

Date: Mon, 13 Sep 2010 11:13:16 -0700

Subject: 1 step forward, 2 steps back

 

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

                         

[Guest guest]

Yes, my son does sleep better with someone next to him. He's 4 and a half, btw.

We do the hugs and squishes and that sort of thing. But I'll do a bit more, I

think. No, he doesn't nap at all unless he's sick.

Thanks! I appreciate it.

----- Receiving the following content -----

From: Henrietta Osodi

Receiver:

Time: 2010-09-13, 13:25:24

Subject: Re: 1 step forward, 2 steps back

>,

>I do not have 100% solutions for you. We go through the sleep deprivation in

my

>house too. My 4 year old will not sleep through the night so I wake up several

>times through the night to put him back to bed. What he tends to seek is body

>warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

>The occupational therapist has suggested a weighted blanket for my son, we are

>still waiting on our order. The other things they suggested are heavy work

>before bed time such as pulling and carrying heavy stuff. I have no idea how

>old your child is. My son also does the putting his hand in my shirt and I

>constantly take his hand away, he does it more for attention seeking. My son

>also benefits from deep pressure all over his body every few hours during the

>day, he likes to get squeezes through out the day. I hope this helps a bit at

>least. I am with you there, the sleep deprivation works a number on our

>bodies. D

>Does your son still take naps?, if he does, you may want to cut it out. I know

>that has helped a great deal in our household. If my son takes a nap, it has

to

>be before 2pm and only for about 30minutes. Stay strong even in the midst of

>not seeing the light at the end of the tunnel. I have not gone the DAN route

>yet because the only one I thought of seeing was not completely honest. I felt

>it was too money driven. Good luck.

>

>

>

>

>

>________________________________

>From: West

>

>Sent: Mon, September 13, 2010 2:13:16 PM

>Subject: 1 step forward, 2 steps back

>

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

>and it was awful. The DAN doc says it's the worst she's seen. She called the

lab

>(she has a friend there) and he said it was one of the worst he'd seen. So, now

>I'm looking at it going " What now? " and unfortunately, so are they. The theory

>is that he's got a food allergy that is enflaming him so badly that his gut is

>leaking terribly - so for that, we're doing an elimination diet. The serotonin

>markers are nuts. He's terribly toxic from solvents and plastics, phthalates

>being the worst. There's no sign of yeast or bacteria or viruses. That's the

>only good thing.

>But his symptoms are so out of control and nothing seems to be working. He's

got

>a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

>minute he's awake. And it varies between conversation volume and LOUD and

>SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

>night, he slept from 3 to 9. He's obsessed with putting his fingers into my

>shirt. He's so hyper and inattentive that he can't even sit still long enough

to

>eat. He has no interest in anything other than occasionally stacking cards or

>cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

>about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

>most of the time. The only thing that makes any of it better is if we go

>someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

>And better for a while at home afterward. Weird, I know.

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

>crazy.

>

>

>

>

>

>

>

>

[Guest guest]

Ooh, good points. I forgot all about the sleep deprivation thing. Weighted

blankets are AMAZING!! My son actually just has a huge weighted frog and a

weighted lizzard right now. When he covers up I lay them on him...he loves it.

From: onyeanwuli@...

Date: Mon, 13 Sep 2010 13:25:24 -0700

Subject: Re: 1 step forward, 2 steps back

,

I do not have 100% solutions for you. We go through the sleep deprivation in my

house too. My 4 year old will not sleep through the night so I wake up several

times through the night to put him back to bed. What he tends to seek is body

warmth. He sleeps if there is someone sleeping next to him that he can cuddle.

The occupational therapist has suggested a weighted blanket for my son, we are

still waiting on our order. The other things they suggested are heavy work

before bed time such as pulling and carrying heavy stuff. I have no idea how

old your child is. My son also does the putting his hand in my shirt and I

constantly take his hand away, he does it more for attention seeking. My son

also benefits from deep pressure all over his body every few hours during the

day, he likes to get squeezes through out the day. I hope this helps a bit at

least. I am with you there, the sleep deprivation works a number on our

bodies. D

Does your son still take naps?, if he does, you may want to cut it out. I know

that has helped a great deal in our household. If my son takes a nap, it has to

be before 2pm and only for about 30minutes. Stay strong even in the midst of

not seeing the light at the end of the tunnel. I have not gone the DAN route

yet because the only one I thought of seeing was not completely honest. I felt

it was too money driven. Good luck.

________________________________

From: West <shanwest@...>

< >

Sent: Mon, September 13, 2010 2:13:16 PM

Subject: 1 step forward, 2 steps back

I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

But his symptoms are so out of control and nothing seems to be working. He's got

a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

[Guest guest]

Timed release melatonin works wonders, they don't wake up during the night.

nancy j

a child is diagnosed with

asd every 20 seconds

From: West <shanwest@...>

Subject: Re: 1 step forward, 2 steps back

" " < >

Date: Monday, September 13, 2010, 2:01 PM

 

Yes, he gets 3mg before bed and then another 1.5 at midnight if he's still

up, or in the middle of the night if he wakes up.

----- Receiving the following content -----

From: NL

Receiver:

Time: 2010-09-13, 12:46:55

Subject: Re: 1 step forward, 2 steps back

>Have you tried Melatonin to help him sleep?

>

>Nathalie

>

>

>From: West

>Sent: Monday, September 13, 2010 1:13 PM

>

>Subject: 1 step forward, 2 steps back

>

>

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>

>

>

>

>

[Guest guest]

He can't swallow pills.

----- Receiving the following content -----

From: nancy cook

Receiver:

Time: 2010-09-13, 14:12:04

Subject: Re: 1 step forward, 2 steps back

>Timed release melatonin works wonders, they don't wake up during the night.

>

>nancy j

>

>

>

>a child is diagnosed with

>

>asd every 20 seconds

>

>

>

>From: West

>Subject: Re: 1 step forward, 2 steps back

> " "

>Date: Monday, September 13, 2010, 2:01 PM

>

>

>

>

>

>

>

>¡¡

>

>

>

>

>

>

>

>

>

> Yes, he gets 3mg before bed and then another 1.5 at midnight if he's

still up, or in the middle of the night if he wakes up.

>

>

>

>----- Receiving the following content -----

>

>From: NL

>

>Receiver:

>

>Time: 2010-09-13, 12:46:55

>

>Subject: Re: 1 step forward, 2 steps back

>

>

>

>>Have you tried Melatonin to help him sleep?

>

>>

>

>>Nathalie

>

>>

>

>>

>

>>From: West

>

>>Sent: Monday, September 13, 2010 1:13 PM

>

>>

>

>>Subject: 1 step forward, 2 steps back

>

>>

>

>>

>

>>

>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

[Guest guest]

we crush it and dissolve it in juice.  No flavor, goes right down.

nancy j

a child is diagnosed with

asd every 20 seconds

>

>From: West

>Subject: Re: 1 step forward, 2 steps back

> " "

>Date: Monday, September 13, 2010, 2:01 PM

>

>

>

>

>

>

>

>　

>

>

>

>

>

>

>

>

>

> Yes, he gets 3mg before bed and then another 1.5 at midnight if he's

still up, or in the middle of the night if he wakes up.

>

>

>

>----- Receiving the following content -----

>

>From: NL

>

>Receiver:

>

>Time: 2010-09-13, 12:46:55

>

>Subject: Re: 1 step forward, 2 steps back

>

>

>

>>Have you tried Melatonin to help him sleep?

>

>>

>

>>Nathalie

>

>>

>

>>

>

>>From: West

>

>>Sent: Monday, September 13, 2010 1:13 PM

>

>>

>

>>Subject: 1 step forward, 2 steps back

>

>>

>

>>

>

>>

>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

[Guest guest]

But then it's not time released. You've crushed it so he gets it all in one

shot.

----- Receiving the following content -----

From: nancy cook

Receiver:

Time: 2010-09-13, 14:15:55

Subject: Re: 1 step forward, 2 steps back

>we crush it and dissolve it in juice.¡¡ No flavor, goes right down.

>

>nancy j

>

>

>

>a child is diagnosed with

>

>asd every 20 seconds

>

>

>

>>

>

>>From: West

>

>>Subject: Re: 1 step forward, 2 steps back

>

>> " "

>

>>Date: Monday, September 13, 2010, 2:01 PM

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>¡¡

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>> Yes, he gets 3mg before bed and then another 1.5 at midnight if he's

still up, or in the middle of the night if he wakes up.

>

>>

>

>>

>

>>

>

>>----- Receiving the following content -----

>

>>

>

>>From: NL

>

>>

>

>>Receiver:

>

>>

>

>>Time: 2010-09-13, 12:46:55

>

>>

>

>>Subject: Re: 1 step forward, 2 steps back

>

>>

>

>>

>

>>

>

>>>Have you tried Melatonin to help him sleep?

>

>>

>

>>>

>

>>

>

>>>Nathalie

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>From: West

>

>>

>

>>>Sent: Monday, September 13, 2010 1:13 PM

>

>>

>

>>>

>

>>

>

>>>Subject: 1 step forward, 2 steps back

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>

>>

>

>>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>

>>

>

>>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

[Guest guest]

so far, it's working.  Maybe cause we don't pulverize it, just crush it smaller

and give our guy a straw to drink it with.  The crumbles get to the back of his

mouth and he doesn't feel the lumps.  It looks like a small aspirin, so it's

not coated or anything.

nancy j

a child is diagnosed with

asd every 20 seconds

>

>>

>

>>From: West

>

>>Subject: Re: 1 step forward, 2 steps back

>

>> " "

>

>>Date: Monday, September 13, 2010, 2:01 PM

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>　

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>> Yes, he gets 3mg before bed and then another 1.5 at midnight if he's

still up, or in the middle of the night if he wakes up.

>

>>

>

>>

>

>>

>

>>----- Receiving the following content -----

>

>>

>

>>From: NL

>

>>

>

>>Receiver:

>

>>

>

>>Time: 2010-09-13, 12:46:55

>

>>

>

>>Subject: Re: 1 step forward, 2 steps back

>

>>

>

>>

>

>>

>

>>>Have you tried Melatonin to help him sleep?

>

>>

>

>>>

>

>>

>

>>>Nathalie

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>From: West

>

>>

>

>>>Sent: Monday, September 13, 2010 1:13 PM

>

>>

>

>>>

>

>>

>

>>>Subject: 1 step forward, 2 steps back

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>

>>

>

>>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>

>>

>

>>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

>

>>

>

>>>

[Guest guest]

" The theory is that he's got a food allergy that is enflaming him so badly that

his gut is leaking terribly - so for that, we're doing an elimination diet. "

Eliminating allergic foods, digestive enzymes, probiotics and Gastro Support by

Kirkman Labs helped my son's gut healing. But if his gut is leaky, the foods you

replace the eliminated ones with will become a problem. So rotation diet is

usually best, as much as is possible to do.

" He's terribly toxic from solvents and plastics, phthalates being the worst.

There's no sign of yeast or bacteria or viruses. That's the only good thing. "

IV chelation helped my son with those toxins. Have a hard time believing with

that damaged of a gut, he doesn't have an inbalance of good vs. bad bacteria.

Odd.

> " But his symptoms are so out of control and nothing seems to be working. He's

so hyper and inattentive that he can't even sit still long enough to eat. He has

no interest in anything other than occasionally stacking cards or cds. "

The supplement GABA and Taurine and eliminating phenols helped tremendously with

impulsivity, repetitive language/sounds. The best thing we did was chelation and

methyl-B12 shots.Those seemed to balance him and the " noise " in our house

lessened greatly.

" The only thing that makes any of it better is if we go someplace loud/bright.

Like Walmart or Best Buy or Costco. He's content there. And better for a while

at home afterward. "

I've heard of this and can't remember why it happens, but I think your OT could

tell you?

Joanne

www.healingautismandadhd.wordpress.com

[Guest guest]

>

> " The theory is that he's got a food allergy that is enflaming him so badly

that his gut is leaking terribly - so for that, we're doing an elimination

diet. "

>

>Eliminating allergic foods, digestive enzymes, probiotics and Gastro Support by

Kirkman Labs helped my son's gut healing. But if his gut is leaky, the foods you

replace the eliminated ones with will become a problem. So rotation diet is

usually best, as much as is possible to do.

We're trying to figure out the allergic foods, digestive enzymes and probiotics

are already onboard. Gastro Support I will look into!

> " He's terribly toxic from solvents and plastics, phthalates being the worst.

There's no sign of yeast or bacteria or viruses. That's the only good thing. "

>IV chelation helped my son with those toxins. Have a hard time believing with

that damaged of a gut, he doesn't have an inbalance of good vs. bad bacteria.

Odd.

Well, I think that's because we treated him pretty hard for gut bugs before the

test and anything that was in there was fixed by the time the test was done.

Chelation is in the works, but Dr M wants to get his gut healed somewhat first.

She thinks chelating will make him worse, behaviour wise, if he's already not

feeling well.

>> " But his symptoms are so out of control and nothing seems to be working.

He's so hyper and inattentive that he can't even sit still long enough to eat.

He has no interest in anything other than occasionally stacking cards or cds. "

>The supplement GABA and Taurine and eliminating phenols helped tremendously

with impulsivity, repetitive language/sounds. The best thing we did was

chelation and methyl-B12 shots.Those seemed to balance him and the " noise " in

our house lessened greatly.

GABA and Taurine we give at 2000mg/twice a day and 1000mg/twice a day

respectively. B12 shots are a good idea. I do think that the B12 supplement he

takes helps. Shots would probably help more. If nothing is better by the next

time we go, I'm going to push for shots and then chelation.

> " The only thing that makes any of it better is if we go someplace loud/bright.

Like Walmart or Best Buy or Costco. He's content there. And better for a while

at home afterward. "

>I've heard of this and can't remember why it happens, but I think your OT could

tell you?

That's one thing we don't have. But I can find one and ask! Thanks so much.

[Guest guest]

If they get hyper with the DMG you can give Folinic acid to make it go away. I

was ready to try that with my son, but his went away before I could order any:)

So I don't really know how well it works

From: shanwest@...

Date: Mon, 13 Sep 2010 14:05:37 -0700

Subject: RE: 1 step forward, 2 steps back

The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

Thanks for the ideas.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 14:00:58

Subject: RE: 1 step forward, 2 steps back

>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 11:13:16 -0700

>Subject: 1 step forward, 2 steps back

>

>

>

>

>

>

>I'm longing for the 1 step forward... We got my elder son's OAT back last week,

and it was awful. The DAN doc says it's the worst she's seen. She called the lab

(she has a friend there) and he said it was one of the worst he'd seen. So, now

I'm looking at it going " What now? " and unfortunately, so are they. The theory

is that he's got a food allergy that is enflaming him so badly that his gut is

leaking terribly - so for that, we're doing an elimination diet. The serotonin

markers are nuts. He's terribly toxic from solvents and plastics, phthalates

being the worst. There's no sign of yeast or bacteria or viruses. That's the

only good thing.

>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>

>

>

>

>

>

[Guest guest]

Ooh , with the lights blinking thing...I have this terrific website that

somebody sent me. It is therapy toys that are really cheap. They ahd a bunch of

fabulous light up toys. I haven't found th esite yet...I've got to go look

through my folders:) I posted it on the ABMD website a little while ago...I'll

see if I can find it there.

[Guest guest]

It had folinic in it. Still with the hyper. Maybe if I bought some extra folinic

and added it on top of that yet? I dunno.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 17:59:49

Subject: RE: 1 step forward, 2 steps back

>If they get hyper with the DMG you can give Folinic acid to make it go away. I

was ready to try that with my son, but his went away before I could order any:)

So I don't really know how well it works

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 14:05:37 -0700

>Subject: RE: 1 step forward, 2 steps back

>

>

>

>

>

>

>The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

>

>I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

>

>Thanks for the ideas.

>

>

>

>----- Receiving the following content -----

>From: Burleson

>Receiver:

>Time: 2010-09-13, 14:00:58

>Subject: RE: 1 step forward, 2 steps back

>

>>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>>

>>

>>

>>

>>From: shanwest@...

>>Date: Mon, 13 Sep 2010 11:13:16 -0700

>>Subject: 1 step forward, 2 steps back

>>

>>

>>

>>

>>

>>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>>

>>

>>

>>

>>

>>

[Guest guest]

we tried dmg with folinic with folate, threw everything at it but the kitchen

sink.....it made our guy CRAZY....ISSIMG, CLICKING, YOU NAME IT....3 times and

then called it quits.

nancy j

a child is diagnosed with

asd every 20 seconds

From: West <shanwest@...>

Subject: RE: 1 step forward, 2 steps back

" " < >

Date: Monday, September 13, 2010, 6:38 PM

 

It had folinic in it. Still with the hyper. Maybe if I bought some extra

folinic and added it on top of that yet? I dunno.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 17:59:49

Subject: RE: 1 step forward, 2 steps back

>If they get hyper with the DMG you can give Folinic acid to make it go away. I

was ready to try that with my son, but his went away before I could order any:)

So I don't really know how well it works

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 14:05:37 -0700

>Subject: RE: 1 step forward, 2 steps back

>

>

>

>

>

>

>The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

>

>I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

>

>Thanks for the ideas.

>

>

>

>----- Receiving the following content -----

>From: Burleson

>Receiver:

>Time: 2010-09-13, 14:00:58

>Subject: RE: 1 step forward, 2 steps back

>

>>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>>

>>

>>

>>

>>From: shanwest@...

>>Date: Mon, 13 Sep 2010 11:13:16 -0700

>>Subject: 1 step forward, 2 steps back

>>

>>

>>

>>

>>

>>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>>

>>

>>

>>

>>

>>

[Guest guest]

Hmmmm...do you happen to know the dosage? I can look up the recommendation for

the ratio that helps...I've got a fabulous book that has it in there

From: shanwest@...

Date: Mon, 13 Sep 2010 18:38:22 -0700

Subject: RE: 1 step forward, 2 steps back

It had folinic in it. Still with the hyper. Maybe if I bought some extra folinic

and added it on top of that yet? I dunno.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 17:59:49

Subject: RE: 1 step forward, 2 steps back

>If they get hyper with the DMG you can give Folinic acid to make it go away. I

was ready to try that with my son, but his went away before I could order any:)

So I don't really know how well it works

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 14:05:37 -0700

>Subject: RE: 1 step forward, 2 steps back

>

>

>

>

>

>

>The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

>

>I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

>

>Thanks for the ideas.

>

>

>

>----- Receiving the following content -----

>From: Burleson

>Receiver:

>Time: 2010-09-13, 14:00:58

>Subject: RE: 1 step forward, 2 steps back

>

>>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>>

>>

>>

>>

>>From: shanwest@...

>>Date: Mon, 13 Sep 2010 11:13:16 -0700

>>Subject: 1 step forward, 2 steps back

>>

>>

>>

>>

>>

>>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>>

>>

>>

>>

>>

>>

[Guest guest]

Yikes..I've heard of that:( Sorry Did you try Taurine? I'm just

curious...it's on my list of possible things to try

From: endofautism@...

Date: Mon, 13 Sep 2010 19:26:32 -0700

Subject: RE: 1 step forward, 2 steps back

we tried dmg with folinic with folate, threw everything at it but the kitchen

sink.....it made our guy CRAZY....ISSIMG, CLICKING, YOU NAME IT....3 times and

then called it quits.

nancy j

a child is diagnosed with

asd every 20 seconds

From: West <shanwest@...>

Subject: RE: 1 step forward, 2 steps back

" " < >

Date: Monday, September 13, 2010, 6:38 PM

It had folinic in it. Still with the hyper. Maybe if I bought some extra folinic

and added it on top of that yet? I dunno.

----- Receiving the following content -----

From: Burleson

Receiver:

Time: 2010-09-13, 17:59:49

Subject: RE: 1 step forward, 2 steps back

>If they get hyper with the DMG you can give Folinic acid to make it go away. I

was ready to try that with my son, but his went away before I could order any:)

So I don't really know how well it works

>

>

>

>

>From: shanwest@...

>Date: Mon, 13 Sep 2010 14:05:37 -0700

>Subject: RE: 1 step forward, 2 steps back

>

>

>

>

>

>

>The OAT showed no gut dysbiosis, so it's not strep. I did try DMG, but OMG the

hyperactivity got even worse. He was actually quite miserable with the hyperness

then.

>

>I'll look into the antibiotics, but I dunno. I'm scared of throwing his gut

flora out of balance on top of it all.

>

>Thanks for the ideas.

>

>

>

>----- Receiving the following content -----

>From: Burleson

>Receiver:

>Time: 2010-09-13, 14:00:58

>Subject: RE: 1 step forward, 2 steps back

>

>>Oh my gosh! Well you haven't lost your sense of humor and that is a very good

thing...sometimes it's all we have:) Have you tried TMG or DMG? I know they are

supposed to go a long way in healing the actual gut leaks. Also Vancomycin,

Neomycin, Gentamycin, and Rifaxamin are these weird antibiotics that are

supposed to resolve inflammation. I think you might find that they also help

with som eof the tics and stuff....it sounds an awful lot like PANDAS. Have you

had his strep antibodies tested? You should look on tv guide quickly and see if

Discovery Health Channel is going to replay the Mistery Diagnosis on PANDAS

again. It was on last night and my Mom recorded it...I'll see if I can find the

name of the actual episode for you

>>

>>

>>

>>

>>From: shanwest@...

>>Date: Mon, 13 Sep 2010 11:13:16 -0700

>>Subject: 1 step forward, 2 steps back

>>

>>

>>

>>

>>

>>

>>I'm longing for the 1 step forward... We got my elder son's OAT back last

week, and it was awful. The DAN doc says it's the worst she's seen. She called

the lab (she has a friend there) and he said it was one of the worst he'd seen.

So, now I'm looking at it going " What now? " and unfortunately, so are they. The

theory is that he's got a food allergy that is enflaming him so badly that his

gut is leaking terribly - so for that, we're doing an elimination diet. The

serotonin markers are nuts. He's terribly toxic from solvents and plastics,

phthalates being the worst. There's no sign of yeast or bacteria or viruses.

That's the only good thing.

>>But his symptoms are so out of control and nothing seems to be working. He's

got a vocal tic that makes me insane. " Uh! Ay! " around 6 times per minute, every

minute he's awake. And it varies between conversation volume and LOUD and

SHRILL. Like my ears are literally pounding. His sleep is utterly hosed. Last

night, he slept from 3 to 9. He's obsessed with putting his fingers into my

shirt. He's so hyper and inattentive that he can't even sit still long enough to

eat. He has no interest in anything other than occasionally stacking cards or

cds. Mostly, he runs around and jumps and harasses the dog. Oh, and he's happy

about it all. Or at least appears that way. He's not meltdown-y. He doesn't cry

most of the time. The only thing that makes any of it better is if we go

someplace loud/bright. Like Walmart or Best Buy or Costco. He's content there.

And better for a while at home afterward. Weird, I know.

>>I'm all for ideas. Because he's deafening me. And I'm so sleep deprived it's

crazy.

>>

>>

>>

>>

>>

>>