question

[Guest guest]

There was a young gentleman from Greece on the site...Stavros....where are you?STsolakos@... He would be ideal to ask because he is a young guy too.

I was on Rebif for 1 1/2 yrs and progressed rapidly. I have been on LDN for 3 1/2 yrs and had only slight progression in the past year after I had the Shingles (chicken pox) . I was told that Rebif would "protect me"" for 3 months after I stopped it. I stopped July 3, 2003 and started LDN July 4th 2003 and never regretted it.

Try contacting Stavros, let us know how you make out. Kiki

[Guest guest]

Nastja,

I to have MS. I am trying a treatment for Lyme as well right now. I take LDN and have since the end of June '06. If you want to take a MS drug with LDN you can only take Copaxone-no other. You do need a prescription to get LDN. I pay less than $30.00 US to get my script filled. I think it is best if you mention your exact country that you live in so someone may be able to tell you who to contact to get a script.

Good luck write if you have any more questions.

-- [low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?

To get LDN on the positive list for drugs in my country (drugs that insurance will pay for) is a science fiction film lol, but of what I read at the ldn website, it doesn't seem to be too expensive. Do I have to have a prescription to get it?

One last thing. Can I get in touch with doctor Bihali or any other doctor via e-mail? Or should I make an appointment via phone? Can I have a consultation over the phone, shuld I schedule and pay for it? How about the making of the drug? Should I order it from the appointed pharmacies or can I get a pharmacy to manufacture it here?

Sorry if I ask questions that answers could be found for. I have a low level of concentration and a loss of short term memory, I read one day, I forget quickly and have to go back over and over and it is damn exhausting.

Thanks

Jove

p.s. if there is anyone on ldn from a near-by country (Bulgaria, Greece, Serbia, Montenegro, Albania, Croatia, Slovenia, ...), I would really like to hear from you and your way of obtaining the drug, thanks

__________________________________________________

[Guest guest]

Welcome Jove,

Would you like me to send you a copy of the "welcome e-mail" for LDN?

Just let me know

My best

Aletha

[low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?

To get LDN on the positive list for drugs in my country (drugs that insurance will pay for) is a science fiction film lol, but of what I read at the ldn website, it doesn't seem to be too expensive. Do I have to have a prescription to get it?

One last thing. Can I get in touch with doctor Bihali or any other doctor via e-mail? Or should I make an appointment via phone? Can I have a consultation over the phone, shuld I schedule and pay for it? How about the making of the drug? Should I order it from the appointed pharmacies or can I get a pharmacy to manufacture it here?

Sorry if I ask questions that answers could be found for. I have a low level of concentration and a loss of short term memory, I read one day, I forget quickly and have to go back over and over and it is damn exhausting.

Thanks

Jove

p.s. if there is anyone on ldn from a near-by country (Bulgaria, Greece, Serbia, Montenegro, Albania, Croatia, Slovenia, ...), I would really like to hear from you and your way of obtaining the drug, thanks

__________________________________________________

[Guest guest]

All I'm gonna say is, I started on LDN at 43 years old. I had an attack when I was 21. Had LDN been around when I was 21, maybe I'd not have had all those attacks that followed.

I had 10 years of annual attacks before starting LDN, now I'm going on 4 years without ANY. I'd say that's a big improvement.

Good luck to you. From my point of view, the risk is NOT getting it.

[low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?

[Guest guest]

I've been on LDN for a week and seeing good result.I will be getting on copaxone - but until the paperwork and funding gets through my nuero wants me to stay on Avonex- do you know of any problems with the 2 drugs mixing? and Iselborn <camjak@...> wrote: Nastja, I to have MS. I am trying a treatment for Lyme

as well right now. I take LDN and have since the end of June '06. If you want to take a MS drug with LDN you can only take Copaxone-no other. You do need a prescription to get LDN. I pay less than $30.00 US to get my script filled. I think it is best if you mention your exact country that you live in so someone may be able to tell you who to contact to get a script. Good luck write if you have any more questions. -- [low dose naltrexone] question Hi, I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. )) I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty

disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation. I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking? To get LDN on the positive list for drugs in my

country (drugs that insurance will pay for) is a science fiction film lol, but of what I read at the ldn website, it doesn't seem to be too expensive. Do I have to have a prescription to get it? One last thing. Can I get in touch with doctor Bihali or any other doctor via e-mail? Or should I make an appointment via phone? Can I have a consultation over the phone, shuld I schedule and pay for it? How about the making of the drug? Should I order it from the appointed pharmacies or can I get a pharmacy to manufacture it here? Sorry if I ask questions that answers could be found for. I have a low level of concentration and a loss of short term memory, I read one day, I forget quickly and have to go back over and over and it is damn exhausting. Thanks Jove p.s. if there is anyone on ldn from a near-by country (Bulgaria, Greece, Serbia, Montenegro, Albania, Croatia, Slovenia, ...), I would really like to hear from you and your way of obtaining the drug, thanks __________________________________________________

[Guest guest]

Laurel,

This is from http://www.low dose naltrexone.org/further_q_and_a.htm :

" Can LDN be taken along with any of the standard medications for

multiple sclerosis?

It can, and many people with MS do this. However, all of the standard

MS drugs, with the probable exception of Copaxone, are

immunosuppressant and thus tend to oppose the beneficial immune

system upregulation induced by LDN. Therefore, many people with MS

try to wean themselves away from these other medications when they

find that they are doing well on LDN "

....And from (http://www.gazorpa.com/LDNFAQ.html):

" LDN should not be used by people already receiving interferon (Beta

Seron, Avonex, or Rebif).

Because LDN stimulates the immune system and interferon suppresses

it, the two therapies are

incompatible. The combination of these therapies does not cause any

adverse reactions, but it is

believed that they cancel out each other's effectiveness. "

> I've been on LDN for a week and seeing good result.I will be

getting on copaxone - but until the paperwork and funding gets

through my nuero wants me to stay on Avonex- do you know of any

problems with the 2 drugs mixing?

__________________________________________________

[Guest guest]

Congradulations Larry!

i love to hear good news that this "up swing" in health will continue!

sincerely'

kasey

[low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?__________________________________________________

[Guest guest]

Laurel,

You can not do any MS drug except for Copaxone with LDN.

-- [low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?

To get LDN on the positive list for drugs in my country (drugs that insurance will pay for) is a science fiction film lol, but of what I read at the ldn website, it doesn't seem to be too expensive. Do I have to have a prescription to get it?

One last thing. Can I get in touch with doctor Bihali or any other doctor via e-mail? Or should I make an appointment via phone? Can I have a consultation over the phone, shuld I schedule and pay for it? How about the making of the drug? Should I order it from the appointed pharmacies or can I get a pharmacy to manufacture it here?

Sorry if I ask questions that answers could be found for. I have a low level of concentration and a loss of short term memory, I read one day, I forget quickly and have to go back over and over and it is damn exhausting.

Thanks

Jove

p.s. if there is anyone on ldn from a near-by country (Bulgaria, Greece, Serbia, Montenegro, Albania, Croatia, Slovenia, ...), I would really like to hear from you and your way of obtaining the drug, thanks

__________________________________________________

[Guest guest]

>

> Hi,

> I'm an ms-patient and I've been following the discussions abot the

ldn and I really can not make up my mind. I haven't talked to my

neuro about it yet, but I don't think it will make any difference,

it is not really up to her, it is up to me. She will tell me to go

on with my Rebif 44 and wait 3 years until the Tysabri comes to

Europe. ))

----------------- -

Check out remedyfind.com and compare the MS drugs there. Remedyfind

is a site where the common " Joe Patient " can write about their

particular experience with a drug and rate the drug.

Be cautious, as many people write a mostly emotional response with

little to no data / firm results - observations to back up their

findings. To make matters more confusing, generally the first three

months of experience with a drug can be attributed to the " placebo

effect " . Remedyfind does have a spot to report how long person has

been taking a drug. Also, the interferons are such strong drugs, an

immediate negative observation is probably a valid observation.

My personal observation, which does not apply to anyone else: Even

if naltrexone does nothing at all, it's a step ahead of the

interferons. Whatever therapy we decide on, we need to have a

positive attitude about it and never regret marching down that road.

Mileage (L/100km) my vary

[Guest guest]

Nastja,

You should only do LDN. You should not take Avenex. Copaxone is OK with LDN. Most people find it unnecessary to continue on Copaxone with LDN. I would use LDN by itself first and only add Copaxone if you feel it is best and you still need it.

Aletha

[low dose naltrexone] question

Hi,

I'm an ms-patient and I've been following the discussions abot the ldn and I really can not make up my mind. I haven't talked to my neuro about it yet, but I don't think it will make any difference, it is not really up to her, it is up to me. She will tell me to go on with my Rebif 44 and wait 3 years until the Tysabri comes to Europe. ))

I am from Macedonia, Southeastern Europe. In my country, two million people, 1000 with ms... the "concerned" pharmacies from Switzerland and my pretty disorganised and disfunctional country still appoint the ms patients to Rebif 22, I guess I am lucky that I can pay for my 44 dose, but is it really luck? I am 23, dxed with ms at 17 and have taken rebif since 18, for almost six years now. The relapses are not that severe, that's true, but the progression is obvious. I can tackle with everything, but the fatigue is a killer. I am 23, I want to do things young people do. Not really go scoobadiving or skiing or swimming across the ocean, but go out in clubs and stay for more than 3 hours or have sexual intercourse and not feel like a train ran over me for 2 weeks afterwards or even have an execerbation.

I am scared to experiment. Am I experimenting if I take the LDN? How much am I risking?

To get LDN on the positive list for drugs in my country (drugs that insurance will pay for) is a science fiction film lol, but of what I read at the ldn website, it doesn't seem to be too expensive. Do I have to have a prescription to get it?

One last thing. Can I get in touch with doctor Bihali or any other doctor via e-mail? Or should I make an appointment via phone? Can I have a consultation over the phone, shuld I schedule and pay for it? How about the making of the drug? Should I order it from the appointed pharmacies or can I get a pharmacy to manufacture it here?

Sorry if I ask questions that answers could be found for. I have a low level of concentration and a loss of short term memory, I read one day, I forget quickly and have to go back over and over and it is damn exhausting.

Thanks

Jove

p.s. if there is anyone on ldn from a near-by country (Bulgaria, Greece, Serbia, Montenegro, Albania, Croatia, Slovenia, ...), I would really like to hear from you and your way of obtaining the drug, thanks

__________________________________________________

[Guest guest]

Thank you so much perfectlysunnyday. Have you had success with LDN for MS?perfectlysunnyday <mmmorris@...> wrote: Laurel,This is from http://www.low dose naltrexone.org/further_q_and_a.htm :"Can LDN be taken along with any of the standard medications for multiple sclerosis? It can, and many people with MS do this. However, all of the standard MS drugs, with the probable exception of Copaxone, are immunosuppressant and

thus tend to oppose the beneficial immune system upregulation induced by LDN. Therefore, many people with MS try to wean themselves away from these other medications when they find that they are doing well on LDN"...And from (http://www.gazorpa.com/LDNFAQ.html):"LDN should not be used by people already receiving interferon (Beta Seron, Avonex, or Rebif).Because LDN stimulates the immune system and interferon suppresses it, the two therapies areincompatible. The combination of these therapies does not cause any adverse reactions, but it isbelieved that they cancel out each other's effectiveness." > I've been on LDN for a week and seeing good result.I will be getting on copaxone - but

until the paperwork and funding gets through my nuero wants me to stay on Avonex- do you know of any problems with the 2 drugs mixing?__________________________________________________ __________________________________________________

[Guest guest]

Laurel,

I have been on LDN seven months for RRMS. I have better energy,

stamina, strength and wonderful improvements in a four year old case

of optic neuritis. My dose (from the start) is 4.5mg. For me, there

has never been a problem with sleep disturbance or any side

effect...as a matter of fact, I sleep better than ever.

I was on Avonex for about six years. On Avonex, not only did I

continued to decline, but at a faster rate than the many years that I

took nothing at all.

I am SO glad not to have to deal with the side effects anymore, or

worry about what damage the interferon is doing to my body!

> Thank you so much perfectlysunnyday. Have you had success with LDN

for MS?

[Guest guest]

>

> Laurel,

>

> I have been on LDN seven months for RRMS. I have better energy,

> stamina, strength and wonderful improvements in a four year old case

> of optic neuritis.

Hello, I wanted to know about your improvement with your case of optic

neuritis. I tried sending a post before but it came back as

undeliverable so I'll try again. Anyway I've also had a 4 year bout

with optic neuritis where my sight never came back. All I see is

shadows. I'm going to see my new neurologist who will be giving me the

LDN. I'm anxious to see what it can do for me.

Tina

[Guest guest]

Dear Laurel & Tina,

I will forward on some older posts regarding LDN, and other supplements that have been helpful to optical neuritis.

They should be sent to you shortly.

My best

Aletha

[low dose naltrexone] Re: question

>> Laurel, > > I have been on LDN seven months for RRMS. I have better energy, > stamina, strength and wonderful improvements in a four year old case > of optic neuritis. Hello, I wanted to know about your improvement with your case of optic neuritis. I tried sending a post before but it came back as undeliverable so I'll try again. Anyway I've also had a 4 year bout with optic neuritis where my sight never came back. All I see is shadows. I'm going to see my new neurologist who will be giving me the LDN. I'm anxious to see what it can do for me.Tina

[Guest guest]

Technically no -- you can have SPD or SID without having any type of

autism. (I've got a fully neurotypical 17 yos to prove it!) But, many

people with autism have some form of sensory processing issues. My son's

biggest issue is tactile problems, don't bump into him in line or a

crowd or you'll see what I mean!

mommysbudbud wrote:

>

> is Sensory Processing Disorder or Sensory Integration Disorder a form

> of Autism? Someone told me this and I was shocked.

>

>

>

>

< /post;_ylc=X3oDMTJwczNmNzV0BF9TAz\

k3MzU5NzE0BGdycElkAzE4NjM4BGdycHNwSWQDMTcwNjMyOTA1MgRtc2dJZAMxMDI4NTkEc2VjA2Z0cg\

RzbGsDcnBseQRzdGltZQMxMTY5NTEyMDY2?act=reply & messageNum=102859>

[Guest guest]

nope! (though plenty of spectrum kids have sensory processing trouble,

it doesn't follow that sensory processing disroder kids have any

spectrum disorder)

christine

mommysbudbud wrote:

>

> is Sensory Processing Disorder or Sensory Integration Disorder a form

> of Autism? Someone told me this and I was shocked.

>

>

[Guest guest]

When he is at daycare, does he play like the other kids?

Roxanna

( ) question

I have 2 younger boys ages 6 and 1/2 and 4 years old. My 6 year old is an

Aspie. My 4 year old has not been tested but..

Both of my boys are mimics (mostly movies and games). Many of the criteria for

Asperger's can be overlooked in young children with because of the developmental

stages. There is no question with my older son. I knew as soon as I read about

Asperger's that it fit my older son. There are many of the symptoms in my

younger son as well, but he is only 4 and it is not as noticable with him. How

do you tell what is just a young child trying to " be like " the older child and

what is actually symptoms? I know its fairly normal for 4 year olds to imitate

anyone or anything they know/see. I dont get much feedback from daycare, and I

dont want to jump the gun and say please test him without that " something is

definately wrong " feeling. He has many of the classic signs, but some may be

learned traits from his brother. Also, younger has been in daycare since he was

6 weeks old. So he has been socializing with children other than his brother for

8-10 hours per day 5 days a week. I would assum that would be enough to give him

a definate feel for NT type interactions. However, when hes at home both of the

boys are glued together (almost like when twins play), they have their own

language (almost a toddler form of baby talk that I cant understand, but they

both seem to have entire coversations with each other???), he has sensory

issues, he has no sense of personal danger no matter what I try to teach him.

He's social, sort of. He tries very hard just like his brother, however he is

the " director " just like his brother. And if others dont play his way with his

rules, he goes to play by himself. The rules though are rules my older son made

up for his " world " (a mix of harry potter, knights, dinosaurs, star wars, and

nascar. let me tell you sometimes I wonder how they keep it all straight.) Any

thoughts? Also younger doesnt seem to have his own specific topic like his

brother does. He actually just moves in to learn with his brother. Normal

brother interaction or 2! young a spies at work?

Older says: Im going to be an architect and a palentologist when I grow up.

Little one says: I going to be an architect and palentologist too and Im going

to help brother when hes working. (lol )

Sorry for the long post. Any thoughts would be appreciated.

Thanks

Amarith

6 1/2 year old son Aspergers (meds on tues? iep in the works, and behavioral

modification training starting in March)

4 year old son no dx but concerned

[Guest guest]

That is a question that I cant really answer. I made the daycare aware that my

older son who used to go there was and Aspie. I asked that they tell me

anything they saw as being outside the norm with my younger. No response in 6

months either way.

When I have gone in to drop him off or pick him up, I have seen him literally

tackle another child to say hi. I have seen him " directing " other children

while playing in the fantasy world both my boys seem to live in. But I have

never seen him doing any type of play outside of that world with or without

other children. The times I have seen him playing with other kids he acts just

like my Aspie son and will walk away if the other child(ren) refuse to follow

exactly what he tells them to do.

( ) question

I have 2 younger boys ages 6 and 1/2 and 4 years old. My 6 year old is an

Aspie. My 4 year old has not been tested but..

Both of my boys are mimics (mostly movies and games). Many of the criteria for

Asperger's can be overlooked in young children with because of the developmental

stages. There is no question with my older son. I knew as soon as I read about

Asperger's that it fit my older son. There are many of the symptoms in my

younger son as well, but he is only 4 and it is not as noticable with him. How

do you tell what is just a young child trying to " be like " the older child and

what is actually symptoms? I know its fairly normal for 4 year olds to imitate

anyone or anything they know/see. I dont get much feedback from daycare, and I

dont want to jump the gun and say please test him without that " something is

definately wrong " feeling. He has many of the classic signs, but some may be

learned traits from his brother. Also, younger has been in daycare since he was

6 weeks old. So he has been socializing with children other than his brother for

8-10 hours per day 5 days a week. I would assum that would be enough to give him

a definate feel for NT type interactions. However, when hes at home both of the

boys are glued together (almost like when twins play), they have their own

language (almost a toddler form of baby talk that I cant understand, but they

both seem to have entire coversations with each other???), he has sensory

issues, he has no sense of personal danger no matter what I try to teach him.

He's social, sort of. He tries very hard just like his brother, however he is

the " director " just like his brother. And if others dont play his way with his

rules, he goes to play by himself. The rules though are rules my older son made

up for his " world " (a mix of harry potter, knights, dinosaurs, star wars, and

nascar. let me tell you sometimes I wonder how they keep it all straight.) Any

thoughts? Also younger doesnt seem to have his own specific topic like his

brother does. He actually just moves in to learn with his brother. Normal

brother interaction or 2! young a spies at work?

Older says: Im going to be an architect and a palentologist when I grow up.

Little one says: I going to be an architect and palentologist too and Im going

to help brother when hes working. (lol )

Sorry for the long post. Any thoughts would be appreciated.

Thanks

Amarith

6 1/2 year old son Aspergers (meds on tues? iep in the works, and behavioral

modification training starting in March)

4 year old son no dx but concerned

[Guest guest]

Sounds suspicious to me. It would be interesting to watch him at day care

sometime through the day - just to see if he had normal interactions or none at

all.

Roxanna

( ) question

I have 2 younger boys ages 6 and 1/2 and 4 years old. My 6 year old is an

Aspie. My 4 year old has not been tested but..

Both of my boys are mimics (mostly movies and games). Many of the criteria for

Asperger's can be overlooked in young children with because of the developmental

stages. There is no question with my older son. I knew as soon as I read about

Asperger's that it fit my older son. There are many of the symptoms in my

younger son as well, but he is only 4 and it is not as noticable with him. How

do you tell what is just a young child trying to " be like " the older child and

what is actually symptoms? I know its fairly normal for 4 year olds to imitate

anyone or anything they know/see. I dont get much feedback from daycare, and I

dont want to jump the gun and say please test him without that " something is

definately wrong " feeling. He has many of the classic signs, but some may be

learned traits from his brother. Also, younger has been in daycare since he was

6 weeks old. So he has been socializing with children other than his brother for

8-10 hours per day 5 days a week. I would assum that wouldbe enough to give him

a definate feel for NT type interactions. However, when hes at home both of the

boys are glued together (almost like when twins play), they have their own

language (almost a toddler form of baby talk that I cant understand, but they

both seem to have entire coversations with each other???), he has sensory

issues, he has no sense of personal danger no matter what I try to teach him.

He's social, sort of. He tries very hard just like his brother, however he is

the " director " just like his brother. And if others dont play his way with his

rules, he goes to play by himself. The rules though are rules my older son made

up for his " world " (a mix of harry potter, knights, dinosaurs, star wars, and

nascar. let me tell you sometimes I wonder how they keep it all straight.) Any

thoughts? Also younger doesnt seem to have his own specific topic like his

brother does. He actually just moves in to learn with his brother. Normal

brother interaction or 2! young a spies at wor! k?

Older says: Im going to be an architect and a palentologist when I grow up.

Little one says: I going to be an architect and palentologist too and Im going

to help brother when hes working. (lol )

Sorry for the long post. Any thoughts would be appreciated.

Thanks

Amarith

6 1/2 year old son Aspergers (meds on tues? iep in the works, and behavioral

modification training starting in March)

4 year old son no dx but concerned

[Guest guest]

Hi Dawn,

I'm sorry to hear that you'll have to get helmets for your babies. it

is hard to take at first. however it is definitely worth it. babies

adjust quickly, it takes us parents a little longer.

Do you have measurements for what you consider " very mild " for ?

My daughter started her band at 5 mo, and wore it for 5 mo for severe

brachy. it went quickly, and she's already been out of her band for 4

mo. While she was wearing it I got so used to it she looked funny

without. We still keep it on the shelf in her room as a memento.

What kinds of bands will they be getting? When is the casting/scan?

take care and keep us posted.

-christine

mom to sydney/ 13 mo/ starband grad 10-06

>

> We had our appointment today and it is official that and Max have

> Plagiocephaly. I am not surprised at all but I am a little sad now

that it

> is official. Our ped kept telling us not to worry about it that

they will

> round out on their own and I guess I was expecting to hear that today.

>

> Anyway, has a very mild case and Max's is worse. If it were

just

> I am not sure that we would band but since Max will be getting one,

it seem

> that we should do it for too.

>

> Has anyone had a child with a very mild case that decided to band?

Because

> they are fourth months old, she thinks they will only need to wear

the bands

> for three months.

>

> Thanks, Dawn

>

[Guest guest]

I don't remember what the measurements were. They didn't say 's and I

think Max's was 1cm??? But, I am really not sure. We have an appointment

for measurments on March 3rd for the helmet. I don't even know what kind

they use. Gosh, I really don't know much. I was in a little shock and we

went right up for x-rays. The molding company is & Filippis in

Detroit. I will know more when we go.

What were your daughter's measurments for severe brachy?

>From: " christineashok " <christineashok@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Question

>Date: Fri, 23 Feb 2007 20:51:54 -0000

>

>Hi Dawn,

>I'm sorry to hear that you'll have to get helmets for your babies. it

>is hard to take at first. however it is definitely worth it. babies

>adjust quickly, it takes us parents a little longer.

>

>Do you have measurements for what you consider " very mild " for ?

>My daughter started her band at 5 mo, and wore it for 5 mo for severe

>brachy. it went quickly, and she's already been out of her band for 4

>mo. While she was wearing it I got so used to it she looked funny

>without. We still keep it on the shelf in her room as a memento.

>

>What kinds of bands will they be getting? When is the casting/scan?

>take care and keep us posted.

>-christine

>mom to sydney/ 13 mo/ starband grad 10-06

>

>

> >

> > We had our appointment today and it is official that and Max have

> > Plagiocephaly. I am not surprised at all but I am a little sad now

>that it

> > is official. Our ped kept telling us not to worry about it that

>they will

> > round out on their own and I guess I was expecting to hear that today.

> >

> > Anyway, has a very mild case and Max's is worse. If it were

>just

> > I am not sure that we would band but since Max will be getting one,

>it seem

> > that we should do it for too.

> >

> > Has anyone had a child with a very mild case that decided to band?

>Because

> > they are fourth months old, she thinks they will only need to wear

>the bands

> > for three months.

> >

> > Thanks, Dawn

> >

>

>

_________________________________________________________________

With tax season right around the corner, make sure to follow these few

simple tips.

http://articles.moneycentral.msn.com/Taxes/PreparationTips/PreparationTips.aspx?\

icid=HMFebtagline

[Guest guest]

Dawn, My son has mild plagio. Our doctor didn't give us measurements but he said his severity was about a 3 out of 10. He said it was up to us whether or not to do the helmet. We decided to do it because we feared that he would resent our decision if we didn't. When I was a small child, I had a really bad underbite, and my parents had me in a headgear to fix my underbite and it worked...on the contrary we had a friend, whose parents tried to fix his underbite when he was much older and it didn't work and he still has it today. In other words, so a flat head is maybe not that big of a deal and kids can probably deal with it and grow up to lead productive lives, but we felt that we were presented with an opportunity to help our child and decided to do so and I am really glad we did. He has had his helmet about 3 weeks and is doing great...it doesn't bother him a bit and we are already seeing results...very rewarding.

Good luck! Louisville, KY Mom to Wyatt, almost 7 months old Helmet, 2/1/2007Dawn Friedman <dmf2375@...> wrote: We had our appointment today and it is official that and Max have Plagiocephaly. I am not surprised at all but I am a little sad now that it is official. Our ped kept telling us not to worry about it that they will round out on their own and I guess I was expecting to hear that today.Anyway, has a very mild case and

Max's is worse. If it were just I am not sure that we would band but since Max will be getting one, it seem that we should do it for too.Has anyone had a child with a very mild case that decided to band? Because they are fourth months old, she thinks they will only need to wear the bands for three months.Thanks, Dawn>From: "nswords" <nswords >>Reply-Plagiocephaly >Plagiocephaly >Subject: Torticollis Versus Plagio>Date: Fri, 23 Feb 2007 19:10:12 -0000>>I have an issue...if, say in the car seat, I position my plagio baby>with something behind her right shoulder to keep her off her flat>side, then her neck tilts to the left, which

encourages her>torticollos. If I support her chin on the left to counteract the>torticollis, then the right side of her head flattens against the back>of the seat. I feel like everyday I have choose which one to treat in>the car seat, or bouncer, etc. Of course, I try to keep her out of>these things as much as possible, but she's not my only child and if>someone else needs help I sometimes have to put her down for a>minute...and all these minutes add up, I know. Her torticollis is as>important to tackle as her plagio....so what to do?>__________________________________________________________Want a degree but can't afford to quit? Top school degrees online - in as fast as 1 year http://forms.nextag.com/goto.jsp?url=/serv/main/buyer/education.jsp?doSearch=n & tm=y & search=education_text_links_88_h288c & s=4079 & p=5116

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

Try not to be too down. You are doing a good thing for your children. I wish I had went with my gut at 4 months and not listened to our pedi who kept telling me that my daughter's head will round out. I am sure you will have great correction because your children are so young. My daughter has a mild case and got her helmet at about 9.5 months. We haven't seen much change yet, because she did a lot of her growing during her younger months. So, definitely get the helmets now while their growth rate is optimal. , NYDawn Friedman <dmf2375@...> wrote: We had our appointment today and it is official that and Max have Plagiocephaly. I am not surprised at all but I am a little sad now that it is official. Our ped kept telling us not to worry about it that they will round out on their own and I guess I was expecting to hear that today.Anyway, has a very mild case and Max's is worse. If it were just I am not sure that we would band but since Max will be getting one, it seem that we should do it for too.Has anyone had a child with a very mild case that decided to band? Because they are fourth months old, she thinks they will only need to wear the bands for three months.Thanks, Dawn>From: "nswords" <nswords >>Reply-Plagiocephaly >Plagiocephaly >Subject: Torticollis Versus Plagio>Date: Fri, 23 Feb 2007 19:10:12 -0000>>I have an issue...if, say in the car seat, I position my plagio baby>with something behind her right shoulder to keep her off her flat>side, then her neck tilts to the left, which encourages her>torticollos. If I support her chin on the left to counteract the>torticollis, then the right side of her head flattens against the back>of the seat. I feel like everyday I have choose which one to treat in>the car seat, or bouncer, etc. Of course, I try to keep her out of>these things as much as possible, but she's not my only child and if>someone else needs help I sometimes have to put her down for a>minute...and all

these minutes add up, I know. Her torticollis is as>important to tackle as her plagio....so what to do?>__________________________________________________________Want a degree but can't afford to quit? Top school degrees online - in as fast as 1 year http://forms.nextag.com/goto.jsp?url=/serv/main/buyer/education.jsp?doSearch=n & tm=y & search=education_text_links_88_h288c & s=4079 & p=5116

Everyone is raving about the all-new beta.

[Guest guest]

,

Thank you so much, I really needed to hear that. I just feel like everyone

I know thinks that I am going overboard and they really don't understand

this. I have been educating so many people on this. Now that the

specialist say to get the band everyone is starting to understand.

I like the point you made. As a child my parents never put braces on my

teeth and now at the age of 32 I am wearing them! I wish they would have

done it when I was a child and then I wouldn't have gone so many years with

hating my teeth.

My husband also made a great point when he told me that three months would

bring us to the start of summer and they would be done.

I know in my heart this is the right thing to do, I just wish more of our

friends and family understood it.

>From: Shafer <wyattthebear@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Question

>Date: Fri, 23 Feb 2007 13:13:43 -0800 (PST)

>

>Dawn,

> My son has mild plagio. Our doctor didn't give us measurements but he

>said his severity was about a 3 out of 10. He said it was up to us whether

>or not to do the helmet. We decided to do it because we feared that he

>would resent our decision if we didn't. When I was a small child, I had a

>really bad underbite, and my parents had me in a headgear to fix my

>underbite and it worked...on the contrary we had a friend, whose parents

>tried to fix his underbite when he was much older and it didn't work and he

>still has it today. In other words, so a flat head is maybe not that big

>of a deal and kids can probably deal with it and grow up to lead productive

>lives, but we felt that we were presented with an opportunity to help our

>child and decided to do so and I am really glad we did. He has had his

>helmet about 3 weeks and is doing great...it doesn't bother him a bit and

>we are already seeing results...very rewarding.

>Good luck!

>

> Louisville, KY

> Mom to Wyatt, almost 7 months old

> Helmet, 2/1/2007

>Dawn Friedman <dmf2375@...> wrote:

> We had our appointment today and it is official that and

>Max have

>Plagiocephaly. I am not surprised at all but I am a little sad now that it

>is official. Our ped kept telling us not to worry about it that they will

>round out on their own and I guess I was expecting to hear that today.

>

>Anyway, has a very mild case and Max's is worse. If it were just

>I am not sure that we would band but since Max will be getting one, it seem

>that we should do it for too.

>

>Has anyone had a child with a very mild case that decided to band? Because

>they are fourth months old, she thinks they will only need to wear the

>bands

>for three months.

>

>Thanks, Dawn

>

> >From: " nswords " <nswords@...>

> >Reply-Plagiocephaly

> >Plagiocephaly

> >Subject: Torticollis Versus Plagio

> >Date: Fri, 23 Feb 2007 19:10:12 -0000

> >

> >I have an issue...if, say in the car seat, I position my plagio baby

> >with something behind her right shoulder to keep her off her flat

> >side, then her neck tilts to the left, which encourages her

> >torticollos. If I support her chin on the left to counteract the

> >torticollis, then the right side of her head flattens against the back

> >of the seat. I feel like everyday I have choose which one to treat in

> >the car seat, or bouncer, etc. Of course, I try to keep her out of

> >these things as much as possible, but she's not my only child and if

> >someone else needs help I sometimes have to put her down for a

> >minute...and all these minutes add up, I know. Her torticollis is as

> >important to tackle as her plagio....so what to do?

> >

>

>__________________________________________________________

>Want a degree but can't afford to quit? Top school degrees online - in as

>fast as 1 year

>http://forms.nextag.com/goto.jsp?url=/serv/main/buyer/education.jsp?doSearch=n & \

tm=y & search=education_text_links_88_h288c & s=4079 & p=5116

>

>

>

>

>

>

>---------------------------------

>Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

_________________________________________________________________

Find a local pizza place, movie theater, and more….then map the best route!

http://maps.live.com/?icid=hmtag1 & FORM=MGAC01

[Guest guest]

Is 10mm considered moderate? If Max's is 10mm, I wonder what is since

she told me is mild is has to be less than that. The only other option

for us for the helmet is U of M Orthotics and Prosthetics Center.

Has anyone been there and think they are better than and Flippis??

>From: " christineashok " <christineashok@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Question

>Date: Fri, 23 Feb 2007 21:58:15 -0000

>

>Hi, 1cm is probably right. usually they measure in mm, so he would be

>10 mm.

>I looked in the database and seems that and Filippis uses the

>Danmar Helmet which is a passive band. Passive bands are generally

>used only for young babies and max's plagio isn't severe so the band

>should be fine. Maybe others can offer opinions of the orthos there.

>Generally passive bands need to be worn longer than active bands. you

>should check with the ortho if the 3 mo estimate is reasonable.

>

>active band providers include cranial technologies (docband),

>orthomeric (starband) and hanger (hanger band). these generally work

>faster and are adjusted more frequently. I'm not sure if there are

>local providers of any of these bands in your area. with any of these

>bands (including danmar) the key is to have an experience ortho. that

>is the best way to ensure a good outcome.

>

>Brachy is measured differently than plagio. Her cranial index was

>about 100 - meaning her head was equally wide and long (width/length).

>The idea is around 78-80.

>

>hope this isn't too much info to start. there are lots of people here

>going through the same thing, so you'll find plenty of support.

>-christine

>mom to sydney/ 13 mo/ starband grad 10-06

>

>

>

> > > >

> > > > We had our appointment today and it is official that and

>Max have

> > > > Plagiocephaly. I am not surprised at all but I am a little sad now

> > >that it

> > > > is official. Our ped kept telling us not to worry about it that

> > >they will

> > > > round out on their own and I guess I was expecting to hear that

>today.

> > > >

> > > > Anyway, has a very mild case and Max's is worse. If it were

> > >just

> > > > I am not sure that we would band but since Max will be getting one,

> > >it seem

> > > > that we should do it for too.

> > > >

> > > > Has anyone had a child with a very mild case that decided to band?

> > >Because

> > > > they are fourth months old, she thinks they will only need to wear

> > >the bands

> > > > for three months.

> > > >

> > > > Thanks, Dawn

> > > >

> > >

> > >

> >

> > _________________________________________________________________

> > With tax season right around the corner, make sure to follow these few

> > simple tips.

> >

>http://articles.moneycentral.msn.com/Taxes/PreparationTips/PreparationTips.aspx\

?icid=HMFebtagline

> >

>

>

_________________________________________________________________

Win a Zune™—make MSN® your homepage for your chance to win!

http://homepage.msn.com/zune?icid=hmetagline