Introduction

[Guest guest]

<begin rant> A diagnosis of bipolar is not the end of the world as we know

it. Some close family members have bipolar disorder, and we all cope pretty

well. If they work well with their shrinks and take their meds as scheduled,

they do very well. Sometimes, there are ups and downs, which require changes

in meds, but there haven't been any major bipolar firestorms. Bipolar

disorder doesn't have to be an automatic sentence of " I don't know how s/he

stays married. " <end rant>

ps. Steph, I'm not ranting at you in particular. Just using the opportunity

to do a little educating on the subject of bipolar disorder, since it's a

subject that's near and dear to my heart.

wrote:

> Hi! My name is and I have a ....will be 10 year old girl

> (in 3 weeks) ASpergers and Oppositional Defiance Disorder child with

> ADHD and PDD. You have come to the right place! A little

> stressed????? I bet thats putting it midly. Your child has the same

> things as mine only with bipolar which brings you to a whole

> different level of frustration. My best friends husband is bipolar

> and I don't know how she stays married!! Youre right about having

> sooooo many ups and downs. Hopefully your son is on a good mood

> stabilizer!! you'll find lots of support here and great advice too!

> You just have to pick and choose what fits your situation the best.

> Meds are NOT the cure all but sure can help!!! Won't make them

> perfect but easier to live with. This is a good place to rant and

> rave, kick and scream, and let it all out! Lots of support!! Good

> luck and do something for yourself!!!!!

>

> Steph------ Dallas, Texas

>

>

> > Hi, I'm a single mom with a 10 year old boy with

> > Asperger's, bipolar disorder and oppositional

> > defiance disorder. Some days he's a sweetie.

> > Unfortunately, that don't happen often enough. When

> > he gets angry, he gets violent. I'm stressed.

> > Grandma (who was babysitting him while I worked) is

> > stressed. Teachers are stressed. Did I mention I'm

> > stressed?

> >

> > Anyways, it's been a really heartbreaking process

> > here. At first there are those niggly little

> > things, where one notices that things aren't quite

> > right. Then the denial. It isn't him, it's the

> > school that doesn't understand him. Not to mention

> > all the relatives and friends who have so much advice

> > and think he needs Ritalin--the cure-all for all

> > adults who can't cope with children with extra needs.

> >

> >

> > I have found there isn't a single parenting book

> > out there that applies to our situation. I know this

> > because I'm sure I've read nearly all of them. Must

> > be nice to have such normal children...

> >

> > Anyways, sorry to bore you with my little rant.

> > I hadn't expected to type so much up. I'm a little

> > stressed lately and ended up taking sick leave

> > from work. He seems pretty calm lately since we

> > changed his medication. His therapist had to take

> > sick leave recently so he's been kind of lost last

> > couple weeks. Hope she comes back soon.

> >

> >

> > =====

> > Stupid signature

> >

> > DragnFlye

> >

> >

> ______________________________________________________________________

>

> > Post your free ad now! http://personals..ca

>

>

>

[Guest guest]

>

> I have found there isn't a single parenting book

> out there that applies to our situation. I know this

> because I'm sure I've read nearly all of them. Must

> be nice to have such normal children...

>

Hi, welcome to our group!! Nope, no parenting guide for our kids.

But you can hang out here and know a lot of us are in the same

situation!

Roxanna

[Guest guest]

Hi,

Thanks for the introduction. The clinic you're going to is a licensed

CT office, it's not owned by Cranial Tech. That is why probably why

they're more expensive.

Please keep us posted.

> Hi to everyone!

> I guess I kinda jumped on this message board without introducing

> myself & my daughter & our story....for that I apologize. I just

> had loads of questions and jumped right in!

> Thanks, Debbie for your post & inquiry into our story. My

daughter,

> Caitlín, was diagnosed at the 2month well baby visit with plagio.

> She is our first child and we follow Dr's orders to the 't'....so

on

> her back she slept. Unfortunately, she had a preference to sleep

> looking left, thus the flattening on the left side and bulge on the

> right. The tort wasn't bad enough for PT, but we do do the home

> exercises. After months of appointments, etc. (you guys know the

> drill!), she was placed in her DOC band the first week of

> December '03...she was 7 months old then. She didn't get much wear

> the first two weeks due to red spots at the pressure points, but

she

> has worn it pretty religiously since mid Dec. She has just turned

9

> months old and we are very pleased with her progress thus far. The

> flattening is much improved, but the bulge on the opposite side is

> still noticeable. As for the assymmetry, I'm not sure...that's so

> hard to see and is where measurements would help ease my mind. Now

> it's apparently time for a second band, but we are skeptical as to

> this one truly no longer being effective...it seems to fit just the

> same as it did in December. Also, we are under a new insurance

this

> year and I'm sure we will pay completely out of pocket for this

> second one. It seems this Houston office is one of the most

> expensive....$3750 for the band & adjustments. All advice &

support

> is greatly appreciated!!

[Guest guest]

Thanks for your introduction.

I'm sure if you would ask your clinician, he'd be happy to take some

measurements for you. Never hurts to ask!

Cranial Tech has done studies about how long the band is effective

and found 4.5 mos is maximum life span. The bands pressure points &

holding points become exhausted after that amount of time, then

they'll recommend either graduating or a new band.

Hopefully your insurance will surprise you & cover at least partial

band cost. Houston is a licensed center, the Cranial Tech licensed

centers are more expensive than their owned clinics. I think I've

heard their KC & CA licensed centers are also $3,750.00.

I'm happy she's shown good correction thus far though. Keep us

posted.

Debbie Abby's mom DOCGrad

MI

> > Hi to everyone!

> > I guess I kinda jumped on this message board without introducing

> > myself & my daughter & our story....for that I apologize. I

just

> > had loads of questions and jumped right in!

> > Thanks, Debbie for your post & inquiry into our story. My

> daughter,

> > Caitlín, was diagnosed at the 2month well baby visit with

plagio.

> > She is our first child and we follow Dr's orders to

the 't'....so

> on

> > her back she slept. Unfortunately, she had a preference to

sleep

> > looking left, thus the flattening on the left side and bulge on

the

> > right. The tort wasn't bad enough for PT, but we do do the home

> > exercises. After months of appointments, etc. (you guys know the

> > drill!), she was placed in her DOC band the first week of

> > December '03...she was 7 months old then. She didn't get much

wear

> > the first two weeks due to red spots at the pressure points, but

> she

> > has worn it pretty religiously since mid Dec. She has just

turned

> 9

> > months old and we are very pleased with her progress thus far.

The

> > flattening is much improved, but the bulge on the opposite side

is

> > still noticeable. As for the assymmetry, I'm not sure...that's

so

> > hard to see and is where measurements would help ease my mind.

Now

> > it's apparently time for a second band, but we are skeptical as

to

> > this one truly no longer being effective...it seems to fit just

the

> > same as it did in December. Also, we are under a new insurance

> this

> > year and I'm sure we will pay completely out of pocket for this

> > second one. It seems this Houston office is one of the most

> > expensive....$3750 for the band & adjustments. All advice &

> support

> > is greatly appreciated!!

[Guest guest]

Hi and welcome to the group. It seems as if Houston is having a

boom of plagio babies. We've had several in the past week join the

group, so you have some local support as well. It sounds as it your

on well on your way to a rounder noggin for your baby. It is very

common for red spots in the first few weeks. Keep up the good work

and keep us updated on your little one.

Dustie, mom to , DOCGrad'03

Dallas

> Hi to everyone!

> I guess I kinda jumped on this message board without introducing

> myself & my daughter & our story....for that I apologize. I just

> had loads of questions and jumped right in!

> Thanks, Debbie for your post & inquiry into our story. My

daughter,

> Caitlín, was diagnosed at the 2month well baby visit with plagio.

> She is our first child and we follow Dr's orders to the 't'....so

on

> her back she slept. Unfortunately, she had a preference to sleep

> looking left, thus the flattening on the left side and bulge on

the

> right. The tort wasn't bad enough for PT, but we do do the home

> exercises. After months of appointments, etc. (you guys know the

> drill!), she was placed in her DOC band the first week of

> December '03...she was 7 months old then. She didn't get much

wear

> the first two weeks due to red spots at the pressure points, but

she

> has worn it pretty religiously since mid Dec. She has just turned

9

> months old and we are very pleased with her progress thus far.

The

> flattening is much improved, but the bulge on the opposite side is

> still noticeable. As for the assymmetry, I'm not sure...that's so

> hard to see and is where measurements would help ease my mind. Now

> it's apparently time for a second band, but we are skeptical as to

> this one truly no longer being effective...it seems to fit just

the

> same as it did in December. Also, we are under a new insurance

this

> year and I'm sure we will pay completely out of pocket for this

> second one. It seems this Houston office is one of the most

> expensive....$3750 for the band & adjustments. All advice &

support

> is greatly appreciated!!

[Guest guest]

Welcome to the group. I see you have recieved great replies so i wont repeat them. Please keep us posted.

Angie and Jenna

Introduction

Hi to everyone!I guess I kinda jumped on this message board without introducing myself & my daughter & our story....for that I apologize. I just had loads of questions and jumped right in!Thanks, Debbie for your post & inquiry into our story. My daughter, Caitlín, was diagnosed at the 2month well baby visit with plagio. She is our first child and we follow Dr's orders to the 't'....so on her back she slept. Unfortunately, she had a preference to sleep looking left, thus the flattening on the left side and bulge on the right. The tort wasn't bad enough for PT, but we do do the home exercises. After months of appointments, etc. (you guys know the drill!), she was placed in her DOC band the first week of December '03...she was 7 months old then. She didn't get much wear the first two weeks due to red spots at the pressure points, but she has worn it pretty religiously since mid Dec. She has just turned 9 months old and we are very pleased with her progress thus far. The flattening is much improved, but the bulge on the opposite side is still noticeable. As for the assymmetry, I'm not sure...that's so hard to see and is where measurements would help ease my mind. Now it's apparently time for a second band, but we are skeptical as to this one truly no longer being effective...it seems to fit just the same as it did in December. Also, we are under a new insurance this year and I'm sure we will pay completely out of pocket for this second one. It seems this Houston office is one of the most expensive....$3750 for the band & adjustments. All advice & support is greatly appreciated!! For more plagio info

[Guest guest]

Hi Lorraine,

Welcome to the sight, and I know how you feel about having to self-

diagnose your family, and then self-treat too. My son is a patient

of Dr Goldberg's, diagnosed with ASD, but blood work and a year of

anti-virals has proved otherwise, and he is on a steady road to

recovery. But my daughter and I have to stay on top of self-

treating our immune systems or our symptoms suface.

There is a list of doctors on this website...this is a support site

for thoses with CFS or FMS.

http://www.chronicfatiguesupport.com/community/referral/

I have spent some time on the message board there and have found

there are many routes to go...but good reading.

Also, DR G once told me if I beleive my daughter has symptoms of

CFIDS to take her to a rheumotologist, an Immunologist, or an

infectious Disease specialist....that they should run the list of

labs that he recommends and they should know what to do with the

results if there is an autoimmune or viral issue (the theory).

HTH

God luck

--- In , Lorraine M Nessman <adorehymn@j...>

wrote:

> Hi, I'm Lorraine.

>

> My husband and I have four children. None of them have strong

immune

> systems, which makes sense. I ran myself into the ground in

college

> (studying and working, not partying......perhaps I had that

> backwards??!!!). My immune system is finally surging back if the

hair

> regrowth means anything. My hair not only thinned, but it

receeded as

> much as four inches in some areas, and was becoming shorter and

shorter

> in it's growth pattern all around my head. But the hair is

returning.

> My immune system didn't have a chance to re-develop when I had

three

> years of liver dysfunction (no known cause), and/or when I was

pregnant.

> We figured that out after three children, then whoopsed and had

one more,

> so I've been struggling for a long time. Now I am finding out

that I've

> always shadowed NLD, and when my immune system is stretched by a

cold, I

> really seem to materialize into full blown NLD.

>

> Anyway, our oldest son, 15 yo, has been diagnosed with Non-Verbal

> Learning Disability. Our next son, 8 yo, has a clear mind, but

> coordination problems. The next son, 6 yo, is susceptible to

fungal

> infections in various areas of his skin (for example, if he gets a

cold,

> he appears to have ring-worm on his chest). The last child, our

only

> daughter, is only 3 years old. But she has shown signs that lead

me to

> think that she might also have NLD, but it could simply be

dyspraxia and

> mild sensory integration disorder, or something else altogether.

She's

> awfully young for me to be sure. The doctor is not sure either at

this

> point, but she never belly crawled without dragging her ?left?

leg. My

> daughter was born purple and refused oxygen.......long story.

>

> The NLDer has a weak immune system, seen mostly from a tendency

towards

> childhood arthritis. It has not been diagnosed, and low doses of

> MannaVine (the original formual of MannaTech) have been able to

ward off

> the arthritis for now, but it kicks in hard without the MannaVine.

> Sometimes he also takes SeaSilver and/or seaweed. My husband isn't

> strongly convinced that vitamins and such are beneficial at all,

even

> though they have kept me from developing full blown Lupus, but he

does

> get a kick out of giving the kids multi-vitamins sometimes (the

kids

> kind).

>

> The question is what to do now. I am excited to have found your

site,

> and am surfing my way through it slowly.

>

> Is there a list of doctors around the country who are friendly to

the

> ideas? We live in central Oklahoma, so the metropolitan

Oklahoma

> City area would be best, but is there anyone even close enough to

drive

> to who could be helpful?

>

> Besides surfing the site and sponging from the list, do you

have

> other recommendations for reading and/or etc?

>

> Thanks,

>

> Lorraine

[Guest guest]

they are 3,500 in kc mo

Hilly

Re: Introduction

Thanks for your introduction. I'm sure if you would ask your clinician, he'd be happy to take some measurements for you. Never hurts to ask!Cranial Tech has done studies about how long the band is effective and found 4.5 mos is maximum life span. The bands pressure points & holding points become exhausted after that amount of time, then they'll recommend either graduating or a new band.Hopefully your insurance will surprise you & cover at least partial band cost. Houston is a licensed center, the Cranial Tech licensed centers are more expensive than their owned clinics. I think I've heard their KC & CA licensed centers are also $3,750.00.I'm happy she's shown good correction thus far though. Keep us posted.Debbie Abby's mom DOCGradMI> > Hi to everyone!> > I guess I kinda jumped on this message board without introducing > > myself & my daughter & our story....for that I apologize. I just > > had loads of questions and jumped right in!> > Thanks, Debbie for your post & inquiry into our story. My > daughter, > > Caitlín, was diagnosed at the 2month well baby visit with plagio. > > She is our first child and we follow Dr's orders to the 't'....so > on > > her back she slept. Unfortunately, she had a preference to sleep > > looking left, thus the flattening on the left side and bulge on the > > right. The tort wasn't bad enough for PT, but we do do the home > > exercises. After months of appointments, etc. (you guys know the > > drill!), she was placed in her DOC band the first week of > > December '03...she was 7 months old then. She didn't get much wear > > the first two weeks due to red spots at the pressure points, but > she > > has worn it pretty religiously since mid Dec. She has just turned > 9 > > months old and we are very pleased with her progress thus far. The > > flattening is much improved, but the bulge on the opposite side is > > still noticeable. As for the assymmetry, I'm not sure...that's so > > hard to see and is where measurements would help ease my mind. Now > > it's apparently time for a second band, but we are skeptical as to > > this one truly no longer being effective...it seems to fit just the > > same as it did in December. Also, we are under a new insurance > this > > year and I'm sure we will pay completely out of pocket for this > > second one. It seems this Houston office is one of the most > > expensive....$3750 for the band & adjustments. All advice & > support > > is greatly appreciated!!For more plagio info

[Guest guest]

Hi ,

Welcome to the group. Can you put yourself on their cancellation

list to get in sooner?

Natasha

> Hi everyone. I'm new here -- my 6 month old daughter Eleanor has

had

> a flat spot on the right side of her head for a couple of months,

and

> at her ped appointment this morning, her doctor indicated that she

> thought we should see a specialist. We've been trying the

> repositioning for a while now, and while her spot has improved a

tiny

> bit, it's still pretty flat.

>

> Now we're in the process of trying to get in to get a consultation

> with a craniofacial specialist -- though I have good insurance,

the

> name they gave us had no appointments until late June. We're

trying

> to get in for a non-insurance (ouch) appointment with Dr. Craig

Hall

> in Hackensack, NJ.

>

> I'm really upset for my daughter and feeling like a bad mom. Has

> anyone had any experience with this doctor? Thanks in advance for

any

> help you can provide.

>

>

> mom to Eleanor

[Guest guest]

Hi ,

Welcome to the group! I am not from NJ but I wanted to say that I

know how you feel about feeling guilty BUT in no way is it anything

that you did! I too, felt guilty. Just know that what you're doing

now is on the road to roundness Try not to be too hard on

yourself.

I would, like everyone else said, suggest trying to get on a list

for cancelations. Or, try the Cranial Tech office if it's close to

you.

Good luck and keep us posted!

Kim

mom to Kaela (9) and Jaxson 9 mo tort/CranioCap grad 04/09/04

> Hi everyone. I'm new here -- my 6 month old daughter Eleanor has

had

> a flat spot on the right side of her head for a couple of months,

and

> at her ped appointment this morning, her doctor indicated that she

> thought we should see a specialist. We've been trying the

> repositioning for a while now, and while her spot has improved a

tiny

> bit, it's still pretty flat.

>

> Now we're in the process of trying to get in to get a consultation

> with a craniofacial specialist -- though I have good insurance, the

> name they gave us had no appointments until late June. We're trying

> to get in for a non-insurance (ouch) appointment with Dr. Craig

Hall

> in Hackensack, NJ.

>

> I'm really upset for my daughter and feeling like a bad mom. Has

> anyone had any experience with this doctor? Thanks in advance for

any

> help you can provide.

>

>

> mom to Eleanor

[Guest guest]

hi heather,

while i do not know anything about the doctor they are sending you

too, (i'm in texas). i do know everything about feeling like a bad

mom, and feeling even worse for my daughter. i can give you good news

that it is not your fault! you did nothing wrong. unfortunatly so

many doctors are either uneducated in the areas of plagiocephaly and

torticollis, or they have the old-fashioned attitude of " wait and

see " . my daughter will recieve her doc band on the 3rd of may and i

still have days when i feel as if it is all my fault. so hang in

there and know you did nothing wrong. niether plagiocephaly or

torticollis is a reflection on anyone as a parent.....kelly

> Hi everyone. I'm new here -- my 6 month old daughter Eleanor has

had

> a flat spot on the right side of her head for a couple of months,

and

[Guest guest]

I want to thank everyone so much for the warm welcomes

and reassurance. We did manage to get an appointment

next Tuesday afternoon for a consultation with Dr.

Hall, and I guess I will just fight it out with the

insurance company later on. I really appreciate the

support and will let you know how Eleanor progresses.

Mom to Eleanor 10/16/03

Montclair, NJ

On Mon, 26 Apr 2004 17:48:24 -0000, " john and kelly "

wrote:

hi heather,

while i do not know anything about the doctor they are

sending you

too, (i'm in texas). i do know everything about feeling

like a bad

mom, and feeling even worse for my daughter. i can give

you good news

that it is not your fault! you did nothing wrong.

unfortunatly so

many doctors are either uneducated in the areas of

plagiocephaly and

torticollis, or they have the old-fashioned attitude of

" wait and

see " . my daughter will recieve her doc band on the 3rd

of may and i

still have days when i feel as if it is all my fault.

so hang in

there and know you did nothing wrong. niether

plagiocephaly or

torticollis is a reflection on anyone as a

parent.....kelly

--- In Plagiocephaly , heather@p...

wrote:

> Hi everyone. I'm new here -- my 6 month old daughter

Eleanor has

had

> a flat spot on the right side of her head for a

couple of months,

and

For more plagio info, go to

www.plagiocephaly.org/support

[Guest guest]

What is ABA Therapy?

_____

From: Harmon [mailto:lisaharmon@...]

Sent: Monday, May 31, 2004 12:03 PM

Subject: [ ] Introduction

Hello All,

Sorry to post so much without doing this but seems like every time I sit

down to do it I get sidetracked. I am Mom to a NT 13 yo boy and a 10 yo boy

on the spectrum. He was diagnosed at the age of three. As a baby, he was a

little unusual but in general he was progressing until about 18 months. He

had his MMR at 15 months and had a pretty bad reaction to it - high fever

and just sick. He regressed after that - lost words, quit letting us read

to him, etc. He received traditional speech therapy until he was three with

no progress and then we started ABA therapy. He made immediate progress.

About the time he was diagnosed, biological treatments were all so

theoreticalso decided to let it go. We tried a few things that were easy.

He took DMG for many years which was helpful. At one point, I gave him CLO

and he became very hyper and tic-y. We tried enzymes, saw no change and he

had stomach aches alot. He took Super Nu Thera for a while with no change.

He has allergies but never seemed to have any problem with particular foods.

He had bad eczema as a baby but that has just become dry bumpy skin that is

worse in the winter but never goes away.

The only thing that has made a difference is Adderall. This improves his

focus and his sensory type behaviors. The only support he receives at

school is that we hand pick his teacher for the next year and make sure she

has some info about HFA. He has wonderful grades, some friends, and many

talents.

THANKS to all you pioneers who have done the work needed to make all these

treatments alot less theoretical. What a great resource! The reason I'm

here is that I would like for him to be able to stop taking Adderall. He

had his first asthma attack last year so that's a concern. Our doctor has

always said the skin condition was allergies but I would like to see if we

can clear that up.

I plan to do a hair test but until that arrives I have been trying to start

some things he needs for support for chelation. I have been giving him

Super Nu Thera 1/day. I suppose I need to increase that at some point? I

added flax seed oil last week. I'm not sure what to do next. If any of you

have opinions about the order to add stuff I'd like to hear it. I just want

to add things slowly so I know what each one is doing. He has never shown

any of the physical signs of yeast but he does occasionally giggle

uncontrolably. He did this alot when we tried to change his medication a

few months back but it went away when we changed back to his old med. He

loves fruit and I was wondering if kids who have trouble with phenols crave

them like GFCF kids. Doesn't have signs of this that I know of.

I knew this would get too long. If you got this far, thanks for reading and

I'm looking forward to hearing from you.

H.

=======================================================

[Guest guest]

applied behavioral analysis

On May 31, 2004, at 1:35 PM, Pridmore wrote:

> What is ABA Therapy?

>

>

>

>

>

>

>

> _____

>

> From: Harmon [mailto:lisaharmon@...]

> Sent: Monday, May 31, 2004 12:03 PM

>

> Subject: [ ] Introduction

>

>

>

> Hello All,

>

> Sorry to post so much without doing this but seems like every time I

> sit

> down to do it I get sidetracked. I am Mom to a NT 13 yo boy and a 10

> yo boy

> on the spectrum. He was diagnosed at the age of three. As a baby, he

> was a

> little unusual but in general he was progressing until about 18

> months. He

> had his MMR at 15 months and had a pretty bad reaction to it - high

> fever

> and just sick. He regressed after that - lost words, quit letting us

> read

> to him, etc. He received traditional speech therapy until he was

> three with

> no progress and then we started ABA therapy. He made immediate

> progress.

>

> About the time he was diagnosed, biological treatments were all so

> theoreticalso decided to let it go. We tried a few things that were

> easy.

> He took DMG for many years which was helpful. At one point, I gave

> him CLO

> and he became very hyper and tic-y. We tried enzymes, saw no change

> and he

> had stomach aches alot. He took Super Nu Thera for a while with no

> change.

> He has allergies but never seemed to have any problem with particular

> foods.

> He had bad eczema as a baby but that has just become dry bumpy skin

> that is

> worse in the winter but never goes away.

>

> The only thing that has made a difference is Adderall. This improves

> his

> focus and his sensory type behaviors. The only support he receives at

> school is that we hand pick his teacher for the next year and make

> sure she

> has some info about HFA. He has wonderful grades, some friends, and

> many

> talents.

>

> THANKS to all you pioneers who have done the work needed to make all

> these

> treatments alot less theoretical. What a great resource! The reason

> I'm

> here is that I would like for him to be able to stop taking Adderall.

> He

> had his first asthma attack last year so that's a concern. Our doctor

> has

> always said the skin condition was allergies but I would like to see

> if we

> can clear that up.

>

> I plan to do a hair test but until that arrives I have been trying to

> start

> some things he needs for support for chelation. I have been giving him

> Super Nu Thera 1/day. I suppose I need to increase that at some

> point? I

> added flax seed oil last week. I'm not sure what to do next. If any

> of you

> have opinions about the order to add stuff I'd like to hear it. I

> just want

> to add things slowly so I know what each one is doing. He has never

> shown

> any of the physical signs of yeast but he does occasionally giggle

> uncontrolably. He did this alot when we tried to change his

> medication a

> few months back but it went away when we changed back to his old med.

> He

> loves fruit and I was wondering if kids who have trouble with phenols

> crave

> them like GFCF kids. Doesn't have signs of this that I know of.

>

> I knew this would get too long. If you got this far, thanks for

> reading and

> I'm looking forward to hearing from you.

>

> H.

>

>

>

> =======================================================

>

[Guest guest]

You may want to find out about " Verbal Behaviour " too.

See Carbone, or Verbal Behaviour website.

-- In , " Pridmore "

<spridmore@a...> wrote:

> What is ABA Therapy?

>

>

>

>

>

>

>

> _____

>

> From: Harmon [mailto:lisaharmon@a...]

> Sent: Monday, May 31, 2004 12:03 PM

>

> Subject: [ ] Introduction

>

>

>

> Hello All,

>

> Sorry to post so much without doing this but seems like every time

I sit

> down to do it I get sidetracked. I am Mom to a NT 13 yo boy and a

10 yo boy

> on the spectrum. He was diagnosed at the age of three. As a

baby, he was a

> little unusual but in general he was progressing until about 18

months. He

> had his MMR at 15 months and had a pretty bad reaction to it -

high fever

> and just sick. He regressed after that - lost words, quit letting

us read

> to him, etc. He received traditional speech therapy until he was

three with

> no progress and then we started ABA therapy. He made immediate

progress.

>

> About the time he was diagnosed, biological treatments were all so

> theoreticalso decided to let it go. We tried a few things that

were easy.

> He took DMG for many years which was helpful. At one point, I

gave him CLO

> and he became very hyper and tic-y. We tried enzymes, saw no

change and he

> had stomach aches alot. He took Super Nu Thera for a while with

no change.

> He has allergies but never seemed to have any problem with

particular foods.

> He had bad eczema as a baby but that has just become dry bumpy

skin that is

> worse in the winter but never goes away.

>

> The only thing that has made a difference is Adderall. This

improves his

> focus and his sensory type behaviors. The only support he

receives at

> school is that we hand pick his teacher for the next year and make

sure she

> has some info about HFA. He has wonderful grades, some friends,

and many

> talents.

>

> THANKS to all you pioneers who have done the work needed to make

all these

> treatments alot less theoretical. What a great resource! The

reason I'm

> here is that I would like for him to be able to stop taking

Adderall. He

> had his first asthma attack last year so that's a concern. Our

doctor has

> always said the skin condition was allergies but I would like to

see if we

> can clear that up.

>

> I plan to do a hair test but until that arrives I have been trying

to start

> some things he needs for support for chelation. I have been

giving him

> Super Nu Thera 1/day. I suppose I need to increase that at some

point? I

> added flax seed oil last week. I'm not sure what to do next. If

any of you

> have opinions about the order to add stuff I'd like to hear it. I

just want

> to add things slowly so I know what each one is doing. He has

never shown

> any of the physical signs of yeast but he does occasionally giggle

> uncontrolably. He did this alot when we tried to change his

medication a

> few months back but it went away when we changed back to his old

med. He

> loves fruit and I was wondering if kids who have trouble with

phenols crave

> them like GFCF kids. Doesn't have signs of this that I know of.

>

> I knew this would get too long. If you got this far, thanks for

reading and

> I'm looking forward to hearing from you.

>

> H.

>

>

>

> =======================================================

>

[Guest guest]

Thanks Dana. I may give them a try again. Since we last tried them, we

have stopped drinking milk but not removed all milk products. He seems to

think that helps his congestion problems.

I was wondering if it would be alright to give him some GSE for a few days

as a test to see if yeast is an issue with him. We were in Central America

this winter and people were using GSE for bacterial and parasite problems.

Were they mistakenly thinking that this helps?

From: " danasview " <danasview@...>

Reply-

Date: Tue, 01 Jun 2004 13:39:44 -0000

Subject: [ ] Re: Introduction

> had his first asthma attack last year so that's a concern. Our

doctor has

> always said the skin condition was allergies but I would like to see

if we

> can clear that up.

Milk is a prime cause of asthma and skin issues. You can try removing

it and see if that helps. Or re-consider enzymes

http://www.houstonni.com/

> loves fruit and I was wondering if kids who have trouble with

phenols crave

> them like GFCF kids.

Some phenol-intolerant kids crave fruits. Kids with yeast also tend

to crave fruits.

Dana

=======================================================

[Guest guest]

> I was wondering if it would be alright to give him some GSE for a

few days

> as a test to see if yeast is an issue with him.

Yes, altho watch for signs of bacteria. When I gave GSE and my son

did not have yeast, it tended to cause a bacteria problem. But giving

one drop should be okay to start.

We were in Central America

> this winter and people were using GSE for bacterial and parasite

problems.

> Were they mistakenly thinking that this helps?

It probably helps eliminate some bacteria, but not all. I don't know

about the parasites.

Dana

[Guest guest]

>>Ive become very interested in the

> bio-medical aspects of autism and would like to try to find out all I

> can about optimizing his health and comfort.

Here is my biomedical page, which includes most of the interventions

currently known to help

http://www.danasview.net/parent3.htm

>>My son eats an extremely limited diet of mostly carbs, milk,

> peanut butter, cheddar cheese, chicken nuggets and some other

> goodies.

You might find that diet restrictions and/or enzymes can be helpful.

>>I cant get him to eat healthy, I was hoping

> enzymes might help, but I dont know where to begin.

This site is good

http://www.enzymestuff.com/

These enzymes are what I use

http://www.houstonni.com/

Dana

[Guest guest]

I began by reading DeFelice's book, reading some of the reference

material listed, and as each thing fell into place, going off of reference

material from those books. Very, very selective reading, not very scientific

way to go about it, and without the appropriate background, a lot left me

scratching my head. Anyway, that's what gave me my jumping off point for

beginning enzymes. Each kid is so different, that no one size fits all,

Houston enzymes are great, but I wouldn't jump into them without

understanding some of it, can be a very disappointing experience if you

don't know what to expect. Can be a marvelous exhilarating experience if you

can anticipate and prepare for what comes. And for my family, enzymes

brought enough of a respite from all our gastrointestinal, and inadvertently

immune issues, that I was able to dig deeper into some serious underlying

problems my son had. Whereas before the enzymes I was trying to bail out the

ocean with a bucket.

Introduction

> Hello everyone. Im new here. I have a 4 year old diagnosed high

> functioning autistic. He's becoming more verbal and starting to use

> language in more meaningful ways. Ive become very interested in the

> bio-medical aspects of autism and would like to try to find out all I

> can about optimizing his health and comfort. Ive gone to the aisles

> of supplements and Im completely baffled about which ones I should

> try for him. My latest internet research has been about urine

> organic acids in autistics (and many other neurological conditions).

> I havent been able to find anyone so far in my other groups familiar

> with these findings and what they might mean. Anyone experienced this

> test? My son eats an extremely limited diet of mostly carbs, milk,

> peanut butter, cheddar cheese, chicken nuggets and some other

> goodies. He takes Centrum rugrats vitamins. He was shown about 2

> months ago through bloodwork to be slightly anemic. He is slightly

> chubby, but hasnt gained hardly any weight in about one and a half to

> two years. He had a routine for diagnosis urine organic acids that

> showed a few abnormalities. He's never taken a pill, but I know this

> is the ONLY way he would take supplements-he has extremely sensitive

> taste buds if you know what I mean. Right now what I believe is

> causing the most discomfort for him is getting stuck on ideas, and

> difficulty stopping himself from repeating the same action over and

> over. Thank goodness head banging and most biting has stopped. He's

> more calm since he's been out of an inappropriate preschool and Im

> very worried about his possible upcoming first day of a special

> preschool (geared more towards speech/language delay than other

> autistic challenges). I cant get him to eat healthy, I was hoping

> enzymes might help, but I dont know where to begin. thanks for

> letting me join. Sorry so long.

>

>

> Caroline

>

>

>

>

>

>

[Guest guest]

Welcome, !

I'm sure you'll get this from other people but here are some books that are

invaluable! The Late Talker, The Out-of-Sync Child, and The Out-of-Sync Child

Has Fun. Obviously, there are a lot of other books out there that are excellent

but I find myself referring to these three most often for help and advice. Good

luck. You have come to the right place!

Sherry

<niallsmagickiss@...> wrote:

Hi all. My name is . My son, Colin was born at 25 weeks gestation. He

is now two and a half and has Expressive Language Disorder, Sensory Integration

Dysfunction, and other developmental delays. He's a bright boy and clearly

understands speech but cannot express himself. His frustration reminds me of my

father's recovery after suffering a stroke.

I have joined this list in hopes of finding support and resources to help me

help my son. We currently get speech therapy and weekly visits from a

developmentalist and we were to see an occupational therapist as well, but in

order to stay one step ahead of my ex husband (who's abuse cause Colin's

premature birth), we must move in with relatives, where these services are

unlikely to be available.

My plan is to take over Colin's therapy myself, so I need guidance. I took

Developmental Psychology in college and worked for years as a music therapist

with Alzheimers patients, so I feel that I have the ability to do this. I

would like to know what I should read to help prepare myself. Please suggest

any resources, including college texts, articles in medical journals, anything

at all.

Thank you,

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

thank you Sherry. I do know those books and they are very helpful. I am

looking for things a bit more in depth, such as clinical manuals, case studies,

medical reference, etc. Thank you though.

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

Welcome, ! You are a busy woman!

Sorry that you are in a flare. What medications do you take?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Introduction

>

>

>

> My name is . I live in Houston, Texas and am raising 5

> children. my R.A. onset in 1991, so I have been 'coping' for 14 years

> and I can think of a lot of things that I would rather be doing. I am

> currently in a huge flare and naturally R.A. is foremost in my mind,

> when I am not in a flare, I completely forget that I have it and just

> tell myself that it is old age (I will be 40 this year).

>

> I was feeling so great a month ago, I really pushed myself to the

> limits, driving hundreds of miles a day, working on the computer, and

> chasing children over the snowy countryside. now I am fighting a

> little cold and heavens to mercatroid, you would think that I had a

> life threatening illness, I am so drained.

>

> I am a professional photographer on my good days and I love to take

> pictures. I also do some family history, some sewing, some baking, and

> some home schooling, interior remodeling, and travel. I really want

> to see and do it all before I go. this condition however really does

> get in the way of that!

>

> (Houston)

> Magnus (6.27.01)

> (9.29.99)

> Naomi (12.7.90)

> Krystal (9.25.85)

> Jasmine (9.25.85)

>

> http://www.wretchedheathen.com (home)

> http://www.barefootgiggles.com (work)

[Guest guest]

- Welcome from another - in Michigan. I am 50 and have been dealing

what was later diagnosed as RA since college. Glad to see you here- hope things

get better for you. Your disability app was turned down like many in the first

round- although age should work to your benefit in the appellate - usually 50

and over is good -55 and over better with regard to retraining. I am still

working- poverty law firm that does social security disability benefits rights

work-0 and have spent some time reviewing apps and the grid. I have been very

fortunate inasmuch as my RA has been very slow progressing over the years- but

understand the fatigue. Let's hope the Social Security reforms proposed won't

work to the disadvantage of folks who rely on it. Welcome - this is a wonderful

group of folks.

Hugs and Hi,

in MI

-------------- Original message ----------------------

From: " " <kwendt@...>

>

>

>

> Hello,

> Glad to have bumped into this group.

> I was diagnosed with RA a little over two years ago. Started out

> with methotrexate and large dose of steriod . . . then went to

> Humira and am now on Remicaid, methotrexate, anti depression,

> flexeril and vitamins. Ongoing symptoms led me to a recent diagnosis

> of fibromyalgia and the dry eyes and mouth is thought to be

> Sjorgens. I'm 55 and had to leave work because I couldn't function

> on any level at my job . . . filed for disability and of course have

> been turned down and now at the appeal stage. Have cataracts due to

> the steriods I took for so long.

> I wish I could say I've had a remission but no such luck - I have

> good days here and there and I cherish them.

> I finally changed my rheumatologist to one closer to me and

> more " pro-active " He tested me for the HLA-B20? gene and I have it -

> he hasn't told me much yet beyond that I was positive so I've been

> trying to learn what I can about it. If anyone knows what that

> means, I would love to hear.

> I feel worse for my husband and my family - I look the same so it's

> hard for them to understand why I can't do all the things I used to

> and why I'm so tired . . .

> Anyway - I'm looking forward to learning and sharing with others.

>

> Thanks so much!

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

the whole buffet:

celebrex 400 mg

methotrexate 20 mg

prednisone 10 mg

folic acid 1 mg

ibuprofen 800 mg

chocolate as needed. ;-)

> Welcome, ! You are a busy woman!

>

> Sorry that you are in a flare. What medications do you take?

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Introduction

>

>

> >

> >

> >

> > My name is . I live in Houston, Texas and am raising 5

> > children. my R.A. onset in 1991, so I have been 'coping' for 14 years

> > and I can think of a lot of things that I would rather be doing. I am

> > currently in a huge flare and naturally R.A. is foremost in my mind,

> > when I am not in a flare, I completely forget that I have it and just

> > tell myself that it is old age (I will be 40 this year).

> >

> > I was feeling so great a month ago, I really pushed myself to the

> > limits, driving hundreds of miles a day, working on the computer, and

> > chasing children over the snowy countryside. now I am fighting a

> > little cold and heavens to mercatroid, you would think that I had a

> > life threatening illness, I am so drained.

> >

> > I am a professional photographer on my good days and I love to take

> > pictures. I also do some family history, some sewing, some baking, and

> > some home schooling, interior remodeling, and travel. I really want

> > to see and do it all before I go. this condition however really does

> > get in the way of that!

> >

> > (Houston)

> > Magnus (6.27.01)

> > (9.29.99)

> > Naomi (12.7.90)

> > Krystal (9.25.85)

> > Jasmine (9.25.85)

> >

> > http://www.wretchedheathen.com (home)

> > http://www.barefootgiggles.com (work)

[Guest guest]

karen, we are about the same age and i have had sjogrens, fibromyalgia, osteo

arthritis and now the big RA! it is hard because we do ~look~ the same... and

we do not feel the same that is for sure...

i have just started enbrel and i am feeling better already... my husband is

giving me the injections...

we need to read and educate our selves as much as we can..

and this is a very nice place to do it... gina and paula are very nice and

verrrry knowledgeable on a lot of this...

you can e-mail me anytime you want...

rae

[ ] Introduction

Hello,

Glad to have bumped into this group.

I was diagnosed with RA a little over two years ago. Started out

with methotrexate and large dose of steriod . . . then went to

Humira and am now on Remicaid, methotrexate, anti depression,

flexeril and vitamins. Ongoing symptoms led me to a recent diagnosis

of fibromyalgia and the dry eyes and mouth is thought to be

Sjorgens. I'm 55 and had to leave work because I couldn't function

on any level at my job . . . filed for disability and of course have

been turned down and now at the appeal stage. Have cataracts due to

the steriods I took for so long.

I wish I could say I've had a remission but no such luck - I have

good days here and there and I cherish them.

I finally changed my rheumatologist to one closer to me and

more " pro-active " He tested me for the HLA-B20? gene and I have it -

he hasn't told me much yet beyond that I was positive so I've been

trying to learn what I can about it. If anyone knows what that

means, I would love to hear.

I feel worse for my husband and my family - I look the same so it's

hard for them to understand why I can't do all the things I used to

and why I'm so tired . . .

Anyway - I'm looking forward to learning and sharing with others.

Thanks so much!