Introduction

[Guest guest]

welcome- my son josh has apraxia- he is 5 and has improved alot going from

severe profound to mild-moderate speech language disorder and starts all day

kindergarten in the fall-charlotte henry west des moines ia

[Guest guest]

Hi, Kim!

Welcome! I hope this list helps!

- Adrienne from Boston

--- kaysue4 <kaysue4@...> wrote:

> Hello everyone,

> My name is Kim and I have a 13 year old son with

> Aperger's, but

> not " officially " dx. His case manager suggested it

> and so has a few

> others. He goes to a small school for children with

> emotional

> issues. I also have 3 other boys, Randy 16 with

> ADHD, Bipolar, and

> Intermittent Explosive Disorder, 15 with ADD

> and Oppositional

> Conduct Disorder, and 10 who is

> " normal " . I am 37 and a

> full-time student currently and will graduate in

> July with an

> associates degree in business computer applications.

> I also have

> depression. I am looking forward to all the advice

> and stories to

> help deal with .

> Thank you,

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Subject: ( ) Introduction

Hello everyone,

My name is Kim and I have a 13 year old son with Aperger's, but

not " officially " dx. His case manager suggested it and so has a few

others. He goes to a small school for children with emotional

issues. I also have 3 other boys, Randy 16 with ADHD, Bipolar, and

Intermittent Explosive Disorder, 15 with ADD and Oppositional

Conduct Disorder, and 10 who is " normal " . I am 37 and a

full-time student currently and will graduate in July with an

associates degree in business computer applications. I also have

depression. I am looking forward to all the advice and stories to

help deal with .

Thank you,

Hi ! Welcome to our group! Hope you feel free to post and chat

with us all whenever you like!

Roxanna

[Guest guest]

Welcome ,

My hat is off to you. I have a 12 yo boy w/AS and 10 yo w/Hyperlexia/AS plus my

husband with AS. And I am just this year looking at homeschooling my oldest. I

have found out a lot of imformation on this site. There are plenty of people

here to support you.

<mkisses@...> wrote: Hello, My name is and I parent five

kids. Two are stepkids, but

they live here full time and no one goes anywhere on weekends, so I

consider myself raising five kids, lol.

I have three of my own, all special needs. My eldest son is adopted

and diagnosed with schizoaffective disorder, my daughter (11) is dx'd

with asperger's and mild mr, my youngest is borderline asperger's with

severe social anxiety. I homeschool my daughter and plan to

homeschool my youngest in two years when he " ages out " of the special

needs program here. I tried to homeschool my eldest but it didn't

work well.

I have MS myself, so life is very challenging(but rewarding too!). My

daughter has blossomed since I took her out of school: socially,

academically, self-esteem wise. Best move I made.

Just looking for some support and hoping that I can offer some as well.

Blessings,

[Guest guest]

Thank you for such a nice welcome! Ihope I can offer support to others as well!

Re: ( ) Introduction

Welcome ,

My hat is off to you. I have a 12 yo boy w/AS and 10 yo w/Hyperlexia/AS plus

my husband with AS. And I am just this year looking at homeschooling my oldest.

I have found out a lot of imformation on this site. There are plenty of people

here to support you.

<mkisses@...> wrote: Hello, My name is and I parent five

kids. Two are stepkids, but

they live here full time and no one goes anywhere on weekends, so I

consider myself raising five kids, lol.

I have three of my own, all special needs. My eldest son is adopted

and diagnosed with schizoaffective disorder, my daughter (11) is dx'd

with asperger's and mild mr, my youngest is borderline asperger's with

severe social anxiety. I homeschool my daughter and plan to

homeschool my youngest in two years when he " ages out " of the special

needs program here. I tried to homeschool my eldest but it didn't

work well.

I have MS myself, so life is very challenging(but rewarding too!). My

daughter has blossomed since I took her out of school: socially,

academically, self-esteem wise. Best move I made.

Just looking for some support and hoping that I can offer some as well.

Blessings,

[Guest guest]

Hi Kim,

Welcome to the group. Unfortunately your story is all too common

around here. A lot of us here have gone through what you've gone

through. It's really great that the ortho is educated about tort and

plagio!!

Andy is adorable! It's hard to see his plagio in the pic you have

posted. I do see that it's the back right side of his head that's

flat. And I aslo see some facial asymmetry. His right eye is a little

bit smaller than his left and his right cheek is a little bit more

forward than his left. That alone would help me decide to band my

baby. Can you post a picture of his head from a bird's eye view? Good

luck and please keep us posted.

-- In Plagiocephaly , " babyodell2006 "

<allykittie79@...> wrote:

>

> Hi everyone,

>

> My name is Kim, married to Andy, and we have a little boy, .

> He was born in April and is now 3 months old.

>

> Since was born, we noticed how he always turned his head to

> the left and tilted it. I did some reading in books and online and

> I thought it sounded a lot like Torticollis. At BOTH his 1 and 2

> month well-baby checkups, I brought this up to his doctor and she

> pretty much blew me off. She said try to use the carseat head

> supports to help keep his head straight (yeah right) and that we'd

> keep an eye on it. I also brought up his head shape (he had

> somewhat of a traumatic birth - emergency section after being

> twisted and stuck, and he had to be pulled back up the birth canal)

> and she said it would get better in time, etc.

>

> Unrelated to his head/neck, I asked for an orthopedic eval for his

> foot (it was turned completely upwards at birth). Mind you, the

> pediatrician didn't offer or suggest this eval, I had to ASK for

> it. So we saw an orthopedic surgeon at Children's Hospital in

> Buffalo and thankfully, his foot is doing awesome. However, the

> ortho automatically diagnosed with Torticollis and

> Plagiocephaly! I had known it all along and it was SO nice to have

> someone validate my concerns. The doctor gave us a script for PT

> and we have been seeing the therapist for 2 weeks now.

>

> has an ultrasound for his hips next Wednesday to rule out hip

> dysplasia. The PT also mentioned helmet therapy today for the

> plagio and is going to bring us info next time we see her (in 2

> weeks). I'm not sure what route to take with this, as I'm not sure

> how severe his plagio exactly is. I'm not around enough babies to

> know how severe or not his head shape is. I'm going to put a

> picture with this and hopefully I can get some feedback from

> everyone.

> http://i18.photobucket.com/albums/b111/allykittie/.jpg

>

> Thanks so much for taking the time to read this!

>

> Oh, and I am switching pediatricians. If anyone is in the

> Buffalo/Niagara area and can suggest one (one that will LISTEN to

> me!) I'd really appreciate it!

>

> Kim, Buffalo, NY

>

[Guest guest]

Hi Kim-

Your little boy is so sweet. I’m

assuming the PT has given you a chart of exercises to do with at home to

loosen up those neck muscles. Do them religiously! Also, these next

two months keep him off his flat side AS MUCH AS POSSIBLE! All though be

careful that he doesn’t start to develop plagio on the opposite side.

We had great luck with repositioning with

our son. He’s almost ten months now, still has some misshaping, but

not very noticeable. We didn’t keep our son off his flat side as

much as we should have…….so if you do you’ll probably have

really good luck. I know it’s a lot of work, but it’ll save

you so much turmoil in the future……TRUST ME!

Also, I know a lady that went through

plagio with both of her children. Her first child wore a helmet.

They were successful with their second child using the repositioning method so a

helmet was unnecessary. With their second child they kept her off her

flat side as much as possible. She told me she used bunny ears.

Bunny ears is a receiving blanket rolled up and bound together with a rubber

band at the ends to make a support to keep pressure off the babies head.

If you want a picture of what I’m talking about I’d be happy to

send one…let me know! However, the bunny ears method was not

recommended by a doctor. It was a concoction she made herself.

Good Luck!

From:

Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of babyodell2006

Sent: Tuesday, July 18, 2006 3:50

PM

Plagiocephaly

Subject: Introduction

Hi everyone,

My name is Kim, married to Andy, and we have a little boy, .

He was born in April and is now 3 months old.

Since was born, we noticed how he always turned his head to

the left and tilted it. I did some reading in books and online and

I thought it sounded a lot like Torticollis. At BOTH his 1 and 2

month well-baby checkups, I brought this up to his doctor and she

pretty much blew me off. She said try to use the carseat head

supports to help keep his head straight (yeah right) and that we'd

keep an eye on it. I also brought up his head shape (he had

somewhat of a traumatic birth - emergency section after being

twisted and stuck, and he had to be pulled back up the birth canal)

and she said it would get better in time, etc.

Unrelated to his head/neck, I asked for an orthopedic eval for his

foot (it was turned completely upwards at birth). Mind you, the

pediatrician didn't offer or suggest this eval, I had to ASK for

it. So we saw an orthopedic surgeon at Children's Hospital in

Buffalo and

thankfully, his foot is doing awesome. However, the

ortho automatically diagnosed with Torticollis and

Plagiocephaly! I had known it all along and it was SO nice to have

someone validate my concerns. The doctor gave us a script for PT

and we have been seeing the therapist for 2 weeks now.

has an ultrasound for his hips next Wednesday to rule out hip

dysplasia. The PT also mentioned helmet therapy today for the

plagio and is going to bring us info next time we see her (in 2

weeks). I'm not sure what route to take with this, as I'm not sure

how severe his plagio exactly is. I'm not around enough babies to

know how severe or not his head shape is. I'm going to put a

picture with this and hopefully I can get some feedback from

everyone.

http://i18.photobucket.com/albums/b111/allykittie/.jpg

Thanks so much for taking the time to read this!

Oh, and I am switching pediatricians. If anyone is in the

Buffalo/Niagara area and can suggest one (one that will LISTEN to

me!) I'd really appreciate it!

Kim, Buffalo, NY

[Guest guest]

Hi Josh and Breean Zimmerman, My 3 month old baby always turns towards his right side and we noticed flatness on the same side, from then we have been trying to distract him to the left side and practicising the exercises the PT has recommended. we tried using a nightform positioner but the foam heated up his body and he started having diahorrea. Could you pls send the picture of the bunny ears. Thank you, PriyaJosh & Breean Zimmerman <jbzman@...> wrote: Hi Kim- Your little boy is so sweet. I’m assuming the PT has given you a chart of exercises to do with at home to loosen up those neck muscles. Do them religiously! Also, these next two months keep him off his flat side AS MUCH AS POSSIBLE! All though be careful that he doesn’t start to develop plagio on the opposite side. We had great luck with repositioning with our son. He’s almost ten months now, still has some misshaping, but not very noticeable. We didn’t keep our son off his flat side as much as we should have…….so if you do you’ll probably have really good luck. I know it’s a lot of work, but it’ll save you so much turmoil in the future……TRUST ME! Also, I know a lady that went through plagio with both of her children. Her first child wore a helmet. They were successful with their second child using the

repositioning method so a helmet was unnecessary. With their second child they kept her off her flat side as much as possible. She told me she used bunny ears. Bunny ears is a receiving blanket rolled up and bound together with a rubber band at the ends to make a support to keep pressure off the babies head. If you want a picture of what I’m talking about I’d be happy to send one…let me know! However, the bunny ears method was not recommended by a doctor. It was a concoction she made herself. Good Luck! From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of babyodell2006Sent: Tuesday, July 18, 2006 3:50 PMPlagiocephaly Subject: Introduction Hi everyone,My name is Kim, married to Andy, and we have a little boy, . He was born in April and is now 3 months old. Since was born, we noticed how he always turned his head to the left and tilted it. I did some reading in books and online and I thought it sounded a lot like Torticollis. At BOTH his 1 and 2 month well-baby checkups, I brought this up to his doctor and she pretty much blew me off. She said try to use the carseat head supports to help keep his head straight (yeah right) and that we'd keep an eye on it. I also brought up his head shape (he had somewhat of a traumatic birth - emergency section after being twisted and stuck, and he had to be pulled back up the birth canal) and she said it would get better in

time, etc.Unrelated to his head/neck, I asked for an orthopedic eval for his foot (it was turned completely upwards at birth). Mind you, the pediatrician didn't offer or suggest this eval, I had to ASK for it. So we saw an orthopedic surgeon at Children's Hospital in Buffalo and thankfully, his foot is doing awesome. However, the ortho automatically diagnosed with Torticollis and Plagiocephaly! I had known it all along and it was SO nice to have someone validate my concerns. The doctor gave us a script for PT and we have been seeing the therapist for 2 weeks now. has an ultrasound for his hips next Wednesday to rule out hip dysplasia. The PT also mentioned helmet therapy today for the plagio and is going to bring us info next time we see her (in 2 weeks). I'm not sure what route to take with this, as I'm not sure how severe his plagio exactly is. I'm not around enough babies

to know how severe or not his head shape is. I'm going to put a picture with this and hopefully I can get some feedback from everyone. http://i18.photobucket.com/albums/b111/allykittie/.jpgThanks so much for taking the time to read this!Oh, and I am switching pediatricians. If anyone is in the Buffalo/Niagara area and can suggest one (one that will LISTEN to me!) I'd really appreciate it!Kim, Buffalo, NY

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Sara,

I am from MI too. I joined becasue of my Grandaughter Autmn.

I also know that Childrens Hospital (Detroit) and U of M (Ann Arbor

also does helmets. I don't know much other than that.

I have talked to Childrens Hospital via email and they did say we

would have to have a prescription to see the specialist. I think

it depends on your insurance if you have to have a referral. Autumn

actually is on state insurance so I knew she would need a referral.

If we were to put her on our insurance I don't think one is needed as

we can go to any doctor as long as they are in the network without

a referral. If you find any other info I would be happy to have that info

also.

Introduction

Hi, I just found this board and this is my first time posting so I wanted to introduce myself. My name is Sara and I have a 4 year old daughter and an almost 6 month old son. When my son was about 2 months old we noticed that he was favoring his right side and started to develop a flat spot there. We took him to the ped and she said that it would be fine and it would round out as he started being off his head more. Well, at the 4 month visit he still had the flat spot and it was getting more noticeable, she still wasn't concerned about it and actually kind of laughed when I asked if he might need a helmet. She gave us stretching exercises to do for his neck which helped right away. After that appointment I did some research and started doing agressive repositioning. He sleeps mostly on his tummy now, he spends time in his exersaucer or Bumbo to keep the pressure off of his head and is never in anything that puts pressure there other than his carseat and we have a Boppy Noggin Nest for that. After all of this it still isn't getting better and I'm concerned about what the next step is. I know that he needs something done, but I'm not counting on cooperation from his doctor. What should be my first step? I printed out the database from this site of the providers in my state (Michigan), but I'm confused about how you go to them and if you need a referral or what. I would really appreciate any advice on where to start and what to do next. I live in mid-Michigan. If there is anyone in my area, who did you go to and what was your experience.Thanks so much for any help that you can give me,Sara

[Guest guest]

Hello we live in the Canton area in Michigan and our 7 month old has

been in his helmet for about three weeks now. We are going to U-of

M's clinic in Ann Arbor and using their helmet. He seems to be

adjusting to it well. We only had to make one visit for an

adjustment. He was 2 cm off and we go back Aug 15th to check his

progress. Please let me know if you need any additional

information. I wish I could update you on the progress or

effectiveness of the helmet but we can't tell by looking.

Kim

>

> Sara,

> I am from MI too. I joined becasue of my Grandaughter Autmn.

> I also know that Childrens Hospital (Detroit) and U of M (Ann

Arbor

> also does helmets. I don't know much other than that.

> I have talked to Childrens Hospital via email and they did say we

> would have to have a prescription to see the specialist. I think

> it depends on your insurance if you have to have a referral.

Autumn

> actually is on state insurance so I knew she would need a referral.

> If we were to put her on our insurance I don't think one is needed

as

> we can go to any doctor as long as they are in the network without

> a referral. If you find any other info I would be happy to have

that info

> also.

>

>

>

>

> Introduction

>

>

> Hi, I just found this board and this is my first time posting so

I

> wanted to introduce myself. My name is Sara and I have a 4 year

old

> daughter and an almost 6 month old son. When my son was about 2

> months old we noticed that he was favoring his right side and

> started to develop a flat spot there. We took him to the ped and

> she said that it would be fine and it would round out as he

started

> being off his head more. Well, at the 4 month visit he still had

> the flat spot and it was getting more noticeable, she still

wasn't

> concerned about it and actually kind of laughed when I asked if

he

> might need a helmet. She gave us stretching exercises to do for

his

> neck which helped right away. After that appointment I did some

> research and started doing agressive repositioning. He sleeps

> mostly on his tummy now, he spends time in his exersaucer or

Bumbo

> to keep the pressure off of his head and is never in anything

that

> puts pressure there other than his carseat and we have a Boppy

> Noggin Nest for that. After all of this it still isn't getting

> better and I'm concerned about what the next step is. I know

that

> he needs something done, but I'm not counting on cooperation

from

> his doctor. What should be my first step? I printed out the

> database from this site of the providers in my state (Michigan),

but

> I'm confused about how you go to them and if you need a referral

or

> what. I would really appreciate any advice on where to start and

> what to do next. I live in mid-Michigan. If there is anyone in

my

> area, who did you go to and what was your experience.

>

> Thanks so much for any help that you can give me,

> Sara

>

[Guest guest]

Amy welcome to the group. I have had MS for 30 some

yrs and now that I moved to a new state the neuro here

says I do not have MS. I am awaiting the appointment

for a 2nd opinion. I fully understand spasticity as I

have EXTREME spasticity. I will be happy to help you

any way that I can.

Maureen

--- onebusymommyof3 <onebusymommyof3@...> wrote:

> Hello! My name is Amy and I'm 36 years old. I was

> diagnosed with MS

> last June and am currently taking daily Copaxone

> shots. I have

> recently learned of LDN and am very interested in

> learning more. I

> generally experience spasicity in my legs at night,

> the strange 'band'

> around the waist that tightens off and on (some

> people may not know

> what I'm talking about), brain fog (but then I have

> 3 young kids, it

> may just be motherhood...LOL!) among other minor

> things. My MS was in

> remission until recently as I came out of a very

> stressful time and

> it's back with a vengence. Currently we don't have

> insurance I am

> waiting for Medicaid to come through and I don't

> even know if they

> would cover LDN anyway since it's not yet approved

> by the FDA.

>

> Anyway...enough of my rambling. Thanks for your

> help and support. I

> look forward to meeting you all!

>

> Bless ya,

> Amy

>

>

>

>

>

__________________________________________________

[Guest guest]

Thanks, Maureen...what do they think you may have if not MS? I had

a spinal tap and was told that was definitive. My spasicity is not

so bad, but uncomfortable enough to jostle me awake at it's worst.

What state are/were you in? I was diagnosed in Nebraska and live in

NY now.

Thanks,

Amy

>

> > Hello! My name is Amy and I'm 36 years old. I was

> > diagnosed with MS

> > last June and am currently taking daily Copaxone

> > shots. I have

> > recently learned of LDN and am very interested in

> > learning more. I

> > generally experience spasicity in my legs at night,

> > the strange 'band'

> > around the waist that tightens off and on (some

> > people may not know

> > what I'm talking about), brain fog (but then I have

> > 3 young kids, it

> > may just be motherhood...LOL!) among other minor

> > things. My MS was in

> > remission until recently as I came out of a very

> > stressful time and

> > it's back with a vengence. Currently we don't have

> > insurance I am

> > waiting for Medicaid to come through and I don't

> > even know if they

> > would cover LDN anyway since it's not yet approved

> > by the FDA.

> >

> > Anyway...enough of my rambling. Thanks for your

> > help and support. I

> > look forward to meeting you all!

> >

> > Bless ya,

> > Amy

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Amy,

I tooam on Copaxone and started LDN 4 months ago> I do get spcaicity in

the middle of the night in my calves every night that always wakes me up. I

noticed since being on LDN that I can go a night or two without any pain and

when I do have the spasicity it's not as bad as pre LDN. I live in upstate

NY good luck with LDN and if you have any questions please get in touch with

me I went thu what you are going thu now and this board was very helpful to

me, take care nn

[low dose naltrexone] Re: Introduction

> Thanks, Maureen...what do they think you may have if not MS? I had

> a spinal tap and was told that was definitive. My spasicity is not

> so bad, but uncomfortable enough to jostle me awake at it's worst.

>

> What state are/were you in? I was diagnosed in Nebraska and live in

> NY now.

>

> Thanks,

> Amy

>

>

>

>>

>> > Hello! My name is Amy and I'm 36 years old. I was

>> > diagnosed with MS

>> > last June and am currently taking daily Copaxone

>> > shots. I have

>> > recently learned of LDN and am very interested in

>> > learning more. I

>> > generally experience spasicity in my legs at night,

>> > the strange 'band'

>> > around the waist that tightens off and on (some

>> > people may not know

>> > what I'm talking about), brain fog (but then I have

>> > 3 young kids, it

>> > may just be motherhood...LOL!) among other minor

>> > things. My MS was in

>> > remission until recently as I came out of a very

>> > stressful time and

>> > it's back with a vengence. Currently we don't have

>> > insurance I am

>> > waiting for Medicaid to come through and I don't

>> > even know if they

>> > would cover LDN anyway since it's not yet approved

>> > by the FDA.

>> >

>> > Anyway...enough of my rambling. Thanks for your

>> > help and support. I

>> > look forward to meeting you all!

>> >

>> > Bless ya,

>> > Amy

>> >

>> >

>> >

>> >

>> >

>>

>>

>> __________________________________________________

>>

[Guest guest]

Thanks, Jillian, nice to meet you!

> >>

> >> > Hello! My name is Amy and I'm 36 years old. I was

> >> > diagnosed with MS

> >> > last June and am currently taking daily Copaxone

> >> > shots. I have

> >> > recently learned of LDN and am very interested in

> >> > learning more. I

> >> > generally experience spasicity in my legs at night,

> >> > the strange 'band'

> >> > around the waist that tightens off and on (some

> >> > people may not know

> >> > what I'm talking about), brain fog (but then I have

> >> > 3 young kids, it

> >> > may just be motherhood...LOL!) among other minor

> >> > things. My MS was in

> >> > remission until recently as I came out of a very

> >> > stressful time and

> >> > it's back with a vengence. Currently we don't have

> >> > insurance I am

> >> > waiting for Medicaid to come through and I don't

> >> > even know if they

> >> > would cover LDN anyway since it's not yet approved

> >> > by the FDA.

> >> >

> >> > Anyway...enough of my rambling. Thanks for your

> >> > help and support. I

> >> > look forward to meeting you all!

> >> >

> >> > Bless ya,

> >> > Amy

> >> >

> >> >

> >> >

> >> >

> >> >

> >>

> >>

> >> __________________________________________________

> >>

[Guest guest]

>

> Hello! My name is Amy and I'm 36 years old. I was diagnosed with

MS

> last June and am currently taking daily Copaxone shots. I have

> recently learned of LDN and am very interested in learning more.

> Bless ya,

> Amy

>

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

Amy, of course the official LDN website is the place to start and

you will find lots of helpful LDN info at my LDN forum and

information center. See below.

LDN website

http://www.ldninfo.org

My LDN forum & info center. Ignore the google adds at the top.

Check out all the red tack sticky posts as they contain valuable

information.

http://ldn.proboards3.com/index.cgi?

[Guest guest]

>

> Amy welcome to the group. I have had MS for 30 some

> yrs and now that I moved to a new state the neuro here

> says I do not have MS. I am awaiting the appointment

> for a 2nd opinion. I fully understand spasticity as I

> have EXTREME spasticity. I will be happy to help you

> any way that I can.

> Maureen

>

==========

Is this our old Maureen that has the website on LDN? If it is, then

what is this doc suspecting you have? Something still autoimmune that

LDN will help?

[Guest guest]

nn,

Try putting soap in your bed at night near the areas with the pain and

spasms.

let us know if it helps

Aletha

[low dose naltrexone] Re: Introduction

>

>

>> Thanks, Maureen...what do they think you may have if not MS? I had

>> a spinal tap and was told that was definitive. My spasicity is not

>> so bad, but uncomfortable enough to jostle me awake at it's worst.

>>

>> What state are/were you in? I was diagnosed in Nebraska and live in

>> NY now.

>>

>> Thanks,

>> Amy

>>

>>

>>

>>>

>>> > Hello! My name is Amy and I'm 36 years old. I was

>>> > diagnosed with MS

>>> > last June and am currently taking daily Copaxone

>>> > shots. I have

>>> > recently learned of LDN and am very interested in

>>> > learning more. I

>>> > generally experience spasicity in my legs at night,

>>> > the strange 'band'

>>> > around the waist that tightens off and on (some

>>> > people may not know

>>> > what I'm talking about), brain fog (but then I have

>>> > 3 young kids, it

>>> > may just be motherhood...LOL!) among other minor

>>> > things. My MS was in

>>> > remission until recently as I came out of a very

>>> > stressful time and

>>> > it's back with a vengence. Currently we don't have

>>> > insurance I am

>>> > waiting for Medicaid to come through and I don't

>>> > even know if they

>>> > would cover LDN anyway since it's not yet approved

>>> > by the FDA.

>>> >

>>> > Anyway...enough of my rambling. Thanks for your

>>> > help and support. I

>>> > look forward to meeting you all!

>>> >

>>> > Bless ya,

>>> > Amy

>>> >

>>> >

>>> >

>>> >

>>> >

>>>

>>>

>>> __________________________________________________

>>>

[Guest guest]

Amy they think I have Transeverse myelitis. I used

in Pennsylvania until 7 weeks ago when I moved to

Alabama. I found a fully handicap accessible home

that is quite large in my opinion 2000 sqft.

--- onebusymommyof3 <onebusymommyof3@...> wrote:

> Thanks, Maureen...what do they think you may have if

> not MS? I had

> a spinal tap and was told that was definitive. My

> spasicity is not

> so bad, but uncomfortable enough to jostle me awake

> at it's worst.

>

> What state are/were you in? I was diagnosed in

> Nebraska and live in

> NY now.

>

> Thanks,

> Amy

>

>

>

> >

> > > Hello! My name is Amy and I'm 36 years old. I

> was

> > > diagnosed with MS

> > > last June and am currently taking daily Copaxone

> > > shots. I have

> > > recently learned of LDN and am very interested

> in

> > > learning more. I

> > > generally experience spasicity in my legs at

> night,

> > > the strange 'band'

> > > around the waist that tightens off and on (some

> > > people may not know

> > > what I'm talking about), brain fog (but then I

> have

> > > 3 young kids, it

> > > may just be motherhood...LOL!) among other minor

> > > things. My MS was in

> > > remission until recently as I came out of a very

> > > stressful time and

> > > it's back with a vengence. Currently we don't

> have

> > > insurance I am

> > > waiting for Medicaid to come through and I don't

> > > even know if they

> > > would cover LDN anyway since it's not yet

> approved

> > > by the FDA.

> > >

> > > Anyway...enough of my rambling. Thanks for your

> > > help and support. I

> > > look forward to meeting you all!

> > >

> > > Bless ya,

> > > Amy

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

I'm not the Maureen with the web site and it is

strange to have 2 Maureen's in a group they think

I have transervse myelitis.

--- Bren <b63powell@...> wrote:

>

> >

> > Amy welcome to the group. I have had MS for 30

> some

> > yrs and now that I moved to a new state the neuro

> here

> > says I do not have MS. I am awaiting the

> appointment

> > for a 2nd opinion. I fully understand spasticity

> as I

> > have EXTREME spasticity. I will be happy to help

> you

> > any way that I can.

> > Maureen

> >

> ==========

>

> Is this our old Maureen that has the website on LDN?

> If it is, then

> what is this doc suspecting you have? Something

> still autoimmune that

> LDN will help?

>

>

>

>

>

>

__________________________________________________

[Guest guest]

>

amy just so you understand. LDN is an off label use of an already

approved medication which is perfectly legal in the US. The original

drug naltrexone has already been tested for safety.

and its very inexpensive.

cyndi

>> Hello! My name is Amy and I'm 36 years old. I was

>> diagnosed with MS

>> last June and am currently taking daily Copaxone

>> shots. I have

>> recently learned of LDN and am very interested in

>> learning more. I

>> generally experience spasicity in my legs at night,

>> the strange 'band'

>> around the waist that tightens off and on (some

>> people may not know

>> what I'm talking about), brain fog (but then I have

>> 3 young kids, it

>> may just be motherhood...LOL!) among other minor

>> things. My MS was in

>> remission until recently as I came out of a very

>> stressful time and

>> it's back with a vengence. Currently we don't have

>> insurance I am

>> waiting for Medicaid to come through and I don't

>> even know if they

>> would cover LDN anyway since it's not yet approved

>> by the FDA.

>>

>> Anyway...enough of my rambling. Thanks for your

>> help and support. I

>> look forward to meeting you all!

>>

>> Bless ya,

>> Amy

>>

>>

>>

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

maureen

there is a woman named crystel who uses ldn for her ms and transverse

myelitits. i'll send you her web page.

cyndi

On Jul 28, 2006, at 9:16 PM, M B wrote:

> Amy they think I have Transeverse myelitis. I used

> in Pennsylvania until 7 weeks ago when I moved to

> Alabama. I found a fully handicap accessible home

> that is quite large in my opinion 2000 sqft.

>

> --- onebusymommyof3 <onebusymommyof3@...> wrote:

>

>> Thanks, Maureen...what do they think you may have if

>> not MS? I had

>> a spinal tap and was told that was definitive. My

>> spasicity is not

>> so bad, but uncomfortable enough to jostle me awake

>> at it's worst.

>>

>> What state are/were you in? I was diagnosed in

>> Nebraska and live in

>> NY now.

>>

>> Thanks,

>> Amy

>>

>>

>>

>>>

>>>> Hello! My name is Amy and I'm 36 years old. I

>> was

>>>> diagnosed with MS

>>>> last June and am currently taking daily Copaxone

>>>> shots. I have

>>>> recently learned of LDN and am very interested

>> in

>>>> learning more. I

>>>> generally experience spasicity in my legs at

>> night,

>>>> the strange 'band'

>>>> around the waist that tightens off and on (some

>>>> people may not know

>>>> what I'm talking about), brain fog (but then I

>> have

>>>> 3 young kids, it

>>>> may just be motherhood...LOL!) among other minor

>>>> things. My MS was in

>>>> remission until recently as I came out of a very

>>>> stressful time and

>>>> it's back with a vengence. Currently we don't

>> have

>>>> insurance I am

>>>> waiting for Medicaid to come through and I don't

>>>> even know if they

>>>> would cover LDN anyway since it's not yet

>> approved

>>>> by the FDA.

>>>>

>>>> Anyway...enough of my rambling. Thanks for your

>>>> help and support. I

>>>> look forward to meeting you all!

>>>>

>>>> Bless ya,

>>>> Amy

>>>>

>>>>

>>>>

>>>>

>>>>

>>>

>>>

>>> __________________________________________________

>>>

[Guest guest]

Oh my gosh, it was so funny when I went to the Tony Attwood convention a few

weeks ago, he talked about how he'll see families and talk about how kids with

AS are when they get older and 50% of the time one looks at the other and says

they think they have AS. As he went into detail about my husband and I kept

looking at eachother and realizing, Oh my gosh he totally has it. There's a few

books I'm going to get that talks about having a relationship with someone with

AS. One is called Asperger In Love by Maxine (I didn't get the last name written

down) and the other is Loving Mr. Spok. I didn't get the author of that one

either but I'm going to look for it on Amazon.com or maybe the tonyattwood.com

site may have it listed.

patty7194@... wrote: I have a double whammie in my

family...lol...my 14 yr old son was recently diagnosed with moderate Aspergers,

characterized by emotional disconnect and a total inability to process social

cues. As my therapist was working with my husband and I, she pulled me aside and

told me that my husband was " classic Aspergers " . It's a mixed thing.....on one

hand it can be pretty frustrating, but it makes me more tolerant (understanding,

at least) of my husband's behavioral quirks. Unfortunately my son has been

incarcerated in a youth sexual offender therapy program for the last 18 months,

who were totally clueless about Aspergers and exclusively used cognitive

behavioral therapy in their program. Through the grace of God and a marvelously

skilled and compassionate therapist (yay, Cheryl!) we were able to find a

residential facility with a comprehensive understanding of Aspergers, along with

continuing treatment for the sexual offender issues. My son

is being transferred to this new facility this next week.

I hope to be able to read other people's experiences, and am looking forward to

the support.

Thanks,

Patty in UT

__________________________________________________________

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[Guest guest]

In a message dated 8/6/2006 5:38:28 P.M. Mountain Standard Time,

kellystar734@... writes:

Well knowing that your hubby is also AS shouldn't change anything even

though you now know as he has not official been dx'd. I rally can't

see why one would want to be dx'd when an adult because its not going

to change anything...as adults we have learned to deal with all that

goes on around us just like our children will one day when they get

older

Marj

The way that it changes things, is that I can now be more tolerant and

understanding about my husband's quirks and mannerisms....and if he does

something

that hurts my feelings, I can look at the behavior through the window of

Aspergers, instead of berating him and watching the bewildered look on his

face,

when he doesn't realize why I " take everything personally. " It actually

helps our marriage, because I see him now for who he is, and can make the

informed decision that I want to be with him for the rest of my life. He has

adapted marvelously, has always been a responsible husband, has held steady

jobs,

and we're blessed with friends that love him for who he is.

Thanks so much for your input.

Patty in UT

[Guest guest]

> she pulled me aside and told me that my husband was " classic

>Aspergers " .>>>>>>>>>>>>

Yep as both my hubby and I have some form of this also. That is why I

feel that all of this is hereditary.

Well knowing that your hubby is also AS shouldn't change anything even

though you now know as he has not official been dx'd. I rally can't

see why one would want to be dx'd when an adult because its not going

to change anything...as adults we have learned to deal with all that

goes on around us just like our children will one day when they get

older.

Marj

[Guest guest]

In your state you can get help for adults with AS?

Wow! Not in Maine!

We are sooo behind!

Depressing. If we don't have maine care (sort of a medicaid

insurance) we can't get any help at all, because most help for us

Aspies must be covered by maine care.

Working on changing that, though!!

*smiles*

lisa

>