New Member

[Guest guest]

Nice to meet you Fiona

[Guest guest]

Welcome Fiona!

I hope this message finds you on the mend and doing very well! Many

people in this group, including myself, have had ups and downs on

the road to health. You will soon discover that this is a very

helpful and friendly group with lots of information!

Good luck and take care!

-Ruth

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

" Muslim, Christian, Buddhist or Jew? I am whatever my dog is... "

[Guest guest]

Thanks Kay.

Fiona Young-Brown

Kentish Maid Candles

www.kentishmaidcandles.com <http://www.kentishmaidcandles.com/>

True religion is the life we live, not the creed we profess. - J.F.

.

-----Original Message-----

Nice to meet you Fiona

[Guest guest]

Thanks Ruth. I've been lurking for a few days and it seems like a great

group.

Fiona Young-Brown

Kentish Maid Candles

www.kentishmaidcandles.com <http://www.kentishmaidcandles.com/>

True religion is the life we live, not the creed we profess. - J.F.

.

-----Original Message-----

Welcome Fiona!

I hope this message finds you on the mend and doing very well! Many

people in this group, including myself, have had ups and downs on

the road to health. You will soon discover that this is a very

helpful and friendly group with lots of information!

Good luck and take care!

-Ruth

[Guest guest]

Welcome !

I'm Amy, 25 and SMA Type I/II (i guess) I'm married to Will (been together 9

years now!) and we have a beautiful almost 1 year old daughter named Olivia.

I never walked either. I use a CPAP at night due to sleep apnea, but

thankfully no need for other invasive equiptment.

Amy

(http://lilypie.com/)

[Guest guest]

Hi Sam,

My name is and I am 39 years old. I was dianosed with SMA II. I work at a

bank managing a bond portfolio. I use supplemental oxygen and a Bi-Pap at night.

Until now, I thought that I was the last person on Earth using an IPPB machine.

You seem like a great person! I would like to know more about you and your

service dog.

Have a great Labor Day weekend!

Lorey <milkynet@...> wrote:

Hi everyone! My name is , I'm 20 and was dianosed with SMA I (1/2). I

have never walked and use an electric wheelchair. I have a g-tube- only for

supplemential calories, use a Bi-Pap at night, and use the almost ancient IBBP

machine for breathing treatments. I am currently going for a degree in web

design and development. In my spare time I like to listen they music, mixed

media art stuff, reading, and shopping! I also have a service dog, Ivy, that I

received through Canine Partners for Life. I have been lure this list for a

while and I thought it was about time to introduce myself!

Sam

[Guest guest]

Welcome Sam,

My name is Kimi. I am 26 w/SMA 2. I have a vent/trach, g tube, and use an

electric wc. I also LOVE TO SHOP, hang w/friends and my bf , and I attend

UPENN for my masters in Bioethics. Where r u from? I'm in PA. hope u enjoy

the group.

love and smiles,

kimi

[Guest guest]

Hi ,

When I first went into the hospital, I was diagnosed with pneumonia, and

that explained shortness of breath. However I still have the shortness of

breath.

The first thing that my doctor checked me for of course, was heart problems.

He did an EKG, a stress test. He thought that I needed a stent implant, as

he said that the stress test showed a major abnormality with the right side

of my heart. He sent me for a heart catheterization, and everything checked

out fine. He did some bone imaging as I do have a diabetic ulcer, and had

cellulitis in my leg. The infection was not to the bone.

He checked my Carrotid artery to make sure that I am getting enough oxygen

to the brain, and am not in danger of a stroke. he did the sleep study and

learned that I do have sleep apnea. he did a stomach examination, and

learned that I have GERD. After the sleep study and the stomach exam, is

when I developed the dizziness and fainting, and the unsteadiness on my

feet.

All these latter things have been going on for about a month now.

I am always open for any advice. Thanks!

Donna

>From: " ~*GINA*~ " <gina_66@...>

>Reply-

>< >

>Subject: Re: New Member

>Date: Fri, 10 Sep 2004 09:39:31 -0500 (Eastern Standard Time)

>

>Welcome to the group!

>

>What all has your doctor tested you for?What are your symptoms? They should

>be more concerned as to why you have become like this " overnight " .

>

>

>

>-- New Member

>

>Hi Everyone,

>

>I am a new member and am just stopping in to say " Hello! " I am

>married with six grown children, 4 step children and 10 grandchildren

>with two more coming soon.

>

>I have been a Type 2 diabetic for about 16 years. I have recently

>been diagnosed with GERD and Sleep Apnea. I am also having some other

>symptoms that my doctor has been unable to find a reason for. I have

>been feeling so overwhelmed with everything, because with symptoms

>that there seem to be no reason for, there are a lot of changes to my

>lifestyle. I have always been a very independent person and suddenly

>I have become very dependent, practically overnight! Also from

>getting around on my own, to suddenly needing a wheel chair!

>

>it just doesn't make a lot of sense!

>

>Donna

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

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>

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>This group is not intended to diagnose or treat illnesses. No one on this

>group is qualified to diagnose medical conditions. If you feel you need

>medical attention, seek the advice of a qualified physician.

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Welcome to the group!

What all has your doctor tested you for?What are your symptoms? They should be more concerned as to why you have become like this "overnight".

-- New Member

Hi Everyone,

I am a new member and am just stopping in to say "Hello!" I am

married with six grown children, 4 step children and 10 grandchildren

with two more coming soon.

I have been a Type 2 diabetic for about 16 years. I have recently

been diagnosed with GERD and Sleep Apnea. I am also having some other

symptoms that my doctor has been unable to find a reason for. I have

been feeling so overwhelmed with everything, because with symptoms

that there seem to be no reason for, there are a lot of changes to my

lifestyle. I have always been a very independent person and suddenly

I have become very dependent, practically overnight! Also from

getting around on my own, to suddenly needing a wheel chair!

it just doesn't make a lot of sense!

Donna

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Message Archives-/messages

Chat:- Scheduled Chats at

/chat

Bookmarks:-

Add a website URL you have found useful.

/links

Personal Complaints or problems:-

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email: -owner

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3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.

To modify your subscription settings please visit:-

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To subscribe or unsubscribe please email:-

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This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.

~~~~ *** ~~~ *** ~~~ *** ~~~~

When nothing is sure, everything is possible.

--- Margaret Drabble

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Oh my gosh! Your symptoms of shortness of breath and dizzy,unsteady,etc. kinda sound like what sent me to the doctors one of the first times I went. After many tests I was diagnosed with Menieres disease http://www.tchain.com/otoneurology/disorders/menieres/menieres.html . I was also having panic attacks to top it off.I also have mitral valve prolapse and hypothyroidism...and they also make me have not so good feelings.

-- New Member

>

>Hi Everyone,

>

>I am a new member and am just stopping in to say "Hello!" I am

>married with six grown children, 4 step children and 10 grandchildren

>with two more coming soon.

>

>I have been a Type 2 diabetic for about 16 years. I have recently

>been diagnosed with GERD and Sleep Apnea. I am also having some other

>symptoms that my doctor has been unable to find a reason for. I have

>been feeling so overwhelmed with everything, because with symptoms

>that there seem to be no reason for, there are a lot of changes to my

>lifestyle. I have always been a very independent person and suddenly

>I have become very dependent, practically overnight! Also from

>getting around on my own, to suddenly needing a wheel chair!

>

>it just doesn't make a lot of sense!

>

>Donna

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

& gt;-subscribe

& gt;-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on this

>group is qualified to diagnose medical conditions. If you feel you need

>medical attention, seek the advice of a qualified physician.

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hello Donna,

Welcome to the group... Lots of nice folks on here... Venting is encouraged... ) I'm Helen, 53, from NW Ohio... Sorry you need be in a wheelchair... What are your symptoms that the doc can't figure out what you have??? Keep posting and updating us...

((( Welcoming Hugs )))

Helen

Hi Everyone,I am a new member and am just stopping in to say "Hello!" I am married with six grown children, 4 step children and 10 grandchildren with two more coming soon.I have been a Type 2 diabetic for about 16 years. I have recently been diagnosed with GERD and Sleep Apnea. I am also having some other symptoms that my doctor has been unable to find a reason for. I have been feeling so overwhelmed with everything, because with symptoms that there seem to be no reason for, there are a lot of changes to my lifestyle. I have always been a very independent person and suddenly I have become very dependent, practically overnight! Also from getting around on my own, to suddenly needing a wheel chair!it just doesn't make a lot of sense!Donna

May today there be peace within you.May you trust God that you are exactly where you are meant to be. "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." Even Angels Need Bear Hugsangelbear1129@...

[Guest guest]

,

I looked at the site that you sent the link for about Meneire's Disease. You

may be onto something. I have had problems with my ears all my life. The

pressure has become so bad recently that I thought it was caused by my CPAP

machine. I was diagnosed with migraines 4 or 5 years ago. They were pretty

well controlled, however recently they seem to be getting bad again. I will

be seeing the doc again on October 4th. I think I will just ask him if he

thinks that there might be a connection. Thanks!

Donna

>From: " ~*GINA*~ " <gina_66@...>

>Reply-

>< >

>Subject: Re: New Member

>Date: Fri, 10 Sep 2004 15:01:17 -0500 (Eastern Standard Time)

>

>Oh my gosh! Your symptoms of shortness of breath and dizzy,unsteady,etc.

>kinda sound like what sent me to the doctors one of the first times I went.

>After many tests I was diagnosed with Menieres disease http://www.tchain

>com/otoneurology/disorders/menieres/menieres.html . I was also having

>panic

>attacks to top it off.I also have mitral valve prolapse and

>hypothyroidism..

>and they also make me have not so good feelings.

>

>

>

>-- New Member

> >

> >Hi Everyone,

> >

> >I am a new member and am just stopping in to say " Hello! " I am

> >married with six grown children, 4 step children and 10 grandchildren

> >with two more coming soon.

> >

> >I have been a Type 2 diabetic for about 16 years. I have recently

> >been diagnosed with GERD and Sleep Apnea. I am also having some other

> >symptoms that my doctor has been unable to find a reason for. I have

> >been feeling so overwhelmed with everything, because with symptoms

> >that there seem to be no reason for, there are a lot of changes to my

> >lifestyle. I have always been a very independent person and suddenly

> >I have become very dependent, practically overnight! Also from

> >getting around on my own, to suddenly needing a wheel chair!

> >

> >it just doesn't make a lot of sense!

> >

> >Donna

> >

> >

> >

> >~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Being Sick Community

> >

> >

> >Message Archives-/messages

> >

> >Chat:- Scheduled Chats at

> >/chat

> >

> >Bookmarks:-

> >Add a website URL you have found useful.

> >/links

> >

> >Personal Complaints or problems:-

> >Please contact a moderator

> >email: -owner

> >

> >Subscription Details:-

> >1) Individual email - means that every email sent to the list you

>receive.

> >2) Daily Digest - sends you 25 messages in one single email for you to

> >browse. This is an excellent option if you receive alot of email.

> >3) Web only/No mail - means that you can pop into groups at your

> >convenience and receive no email.

> >

> >To modify your subscription settings please visit:-

> >/join

> >

> >To subscribe or unsubscribe please email:-

> & gt;-subscribe

> & gt;-unsubscribe

> >

> >This group is not intended to diagnose or treat illnesses. No one on

>this

> >group is qualified to diagnose medical conditions. If you feel you need

> >medical attention, seek the advice of a qualified physician.

> >~~~~ *** ~~~ *** ~~~ *** ~~~~

> >When nothing is sure, everything is possible.

> >

> >--- Margaret Drabble

> >

> >~~~~ *** ~~~ *** ~~~ *** ~~~~

> >

> >

[Guest guest]

Hi Helen,

It is so nice to meet you. The symptoms that my doctor can't find any reason

for are shortness of breath, dizziness and fainting, and unsteadiness on my

feet. The dizziness is so bad, that I am lke a stranger in my home. I am not

able to walk across the center of a floor. I have to hold onto things as I

walk. If I go into the kitchen I have to hold on to the refrigerator, the

stove the counter to get to the sink etc. This all just seemed to happen

overnight, with no warning! It is rather scary, and I am very depressed by

it all. If there were just a reasonable explanation, I think I could accept

it and go on! Thanks for the hugs! I need all I can get.

Donna

>From: angelbear1129@...

>Reply-

>

>Subject: Re: New Member

>Date: Sat, 11 Sep 2004 02:48:25 EDT

>

>Hello Donna,

> Welcome to the group... Lots of nice folks on here... Venting is

>encouraged... ) I'm Helen, 53, from NW Ohio... Sorry you need be in a

>wheelchair... What are your symptoms that the doc can't figure out what

>you have???

>Keep posting and updating us...

>((( Welcoming Hugs )))

>Helen

>

>Hi Everyone,

>

>I am a new member and am just stopping in to say " Hello! " I am

>married with six grown children, 4 step children and 10 grandchildren

>with two more coming soon.

>

>I have been a Type 2 diabetic for about 16 years. I have recently

>been diagnosed with GERD and Sleep Apnea. I am also having some other

>symptoms that my doctor has been unable to find a reason for. I have

>been feeling so overwhelmed with everything, because with symptoms

>that there seem to be no reason for, there are a lot of changes to my

>lifestyle. I have always been a very independent person and suddenly

>I have become very dependent, practically overnight! Also from

>getting around on my own, to suddenly needing a wheel chair!

>

>it just doesn't make a lot of sense!

>

>Donna

>

>May today there be peace within you.

>May you trust God that you are exactly where you are meant to be.

> " I believe that friends are quiet angels who lift us to our feet when our

>wings have trouble remembering how to fly. "

>

>Even Angels Need Bear Hugs

>

>angelbear1129@...

[Guest guest]

Hello Donna! Welcome to the group! I'm sorry you need us but glad you found

us!!! I have some of the same problems as you (just read another one of your

posts too) but i get dizzy and pass out because of low b/p. I have NCS

(Neurocardiogenic Syncope) and it really messed with my independence! One of my

dogs is being trained right now to be my service dog because he alerts me when

my b/p start to drop so we are hoping i can get some independence back. He

already goes out to lunch with me and to a few little stores around town. I also

use a wheelchair when i'm going to be walking or standing for a long time. That

way my b/p doesn't drop on me and i don't get so drained because of it. I'm

waiting for it though....i've had new classes for a whole year now...i still

call them new because i've yet to go " carpet sniffing " (pass out) with them

on...i always smash up my poor classes!! lol. Anyway i hope the doctors figure

out what's going on with you so you can get some help with it!! Took me forever

to find a doctor who would listen. Take care and don't give up hope!

Jessi

[Guest guest]

Hi Jessi,

Thank you so much! you have given me new hope. As I was taking my medicine

last night, I wondered about the blood pressure pill. I do not know why; it

was just suddenly there on my mind, wondering if maybe my blood pressure is

being lowered too much. I am making a list of things that I am wondering

about to talk over with my doctor when I see him on the 4th of October. If

there were just a reason for it all, I honestly think I could adjust and go

on!

Donna

>From: jessi <shanes_maaa@...>

>Reply-

>

>Subject: Re: New Member

>Date: Sat, 11 Sep 2004 09:44:50 -0400 (GMT-04:00)

>

>Hello Donna! Welcome to the group! I'm sorry you need us but glad you found

>us!!! I have some of the same problems as you (just read another one of

>your posts too) but i get dizzy and pass out because of low b/p. I have NCS

>(Neurocardiogenic Syncope) and it really messed with my independence! One

>of my dogs is being trained right now to be my service dog because he

>alerts me when my b/p start to drop so we are hoping i can get some

>independence back. He already goes out to lunch with me and to a few little

>stores around town. I also use a wheelchair when i'm going to be walking or

>standing for a long time. That way my b/p doesn't drop on me and i don't

>get so drained because of it. I'm waiting for it though....i've had new

>classes for a whole year now...i still call them new because i've yet to go

> " carpet sniffing " (pass out) with them on...i always smash up my poor

>classes!! lol. Anyway i hope the doctors figure out what's going on with

>you so you can get some help with it!! Took me forever to find a doctor who

>would listen. Take care and don't give up hope!

>

>Jessi

>

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

>-subscribe

>-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on this

>group is qualified to diagnose medical conditions. If you feel you need

>medical attention, seek the advice of a qualified physician.

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hello Donna! It does make a huge difference to have a " name " or to know what's

going on! I use to pass out ALL the time and doctors were treating me like i was

crazy when we moved here i saw a Neuro and she sent me to a wonderful Preds.

Cardiologist! He is the best around here and he told me right off what he

thought i had and did a few tests and he was right. Made a big difference in how

i felt and how i delt with things. ) anyway gotta go take care of the animals.

take care k

Jessi

Re: New Member

>Date: Sat, 11 Sep 2004 09:44:50 -0400 (GMT-04:00)

>

>Hello Donna! Welcome to the group! I'm sorry you need us but glad you found

>us!!! I have some of the same problems as you (just read another one of

>your posts too) but i get dizzy and pass out because of low b/p. I have NCS

>(Neurocardiogenic Syncope) and it really messed with my independence! One

>of my dogs is being trained right now to be my service dog because he

>alerts me when my b/p start to drop so we are hoping i can get some

>independence back. He already goes out to lunch with me and to a few little

>stores around town. I also use a wheelchair when i'm going to be walking or

>standing for a long time. That way my b/p doesn't drop on me and i don't

>get so drained because of it. I'm waiting for it though....i've had new

>classes for a whole year now...i still call them new because i've yet to go

> " carpet sniffing " (pass out) with them on...i always smash up my poor

>classes!! lol. Anyway i hope the doctors figure out what's going on with

>you so you can get some help with it!! Took me forever to find a doctor who

>would listen. Take care and don't give up hope!

>

>Jessi

>

>

>

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

>Message Archives-/messages

>

>Chat:- Scheduled Chats at

>/chat

>

>Bookmarks:-

>Add a website URL you have found useful.

>/links

>

>Personal Complaints or problems:-

>Please contact a moderator

>email: -owner

>

>Subscription Details:-

>1) Individual email - means that every email sent to the list you receive.

>2) Daily Digest - sends you 25 messages in one single email for you to

>browse. This is an excellent option if you receive alot of email.

>3) Web only/No mail - means that you can pop into groups at your

>convenience and receive no email.

>

>To modify your subscription settings please visit:-

>/join

>

>To subscribe or unsubscribe please email:-

>-subscribe

>-unsubscribe

>

>This group is not intended to diagnose or treat illnesses. No one on this

>group is qualified to diagnose medical conditions. If you feel you need

>medical attention, seek the advice of a qualified physician.

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>When nothing is sure, everything is possible.

>

>--- Margaret Drabble

>

>~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hi Avi

I sympathize with you having to watch a young child be sooo sick. Keep going

the way you are going and I would support the adenoids and tonsils coming

out out as an effort .. At least it may give you some relief!

new member

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is

7 and my young son is 3 years old. Since 3 months from the day he was born

he has been suffering from periodic fevers of about every 4 weeks. The fever

was always followed by swollen tonsils and swollen lymphatic glands. Until

he was 2 years old he was under the supervision of our family doctor, who

was always under the impression that he had some sort of a virus and was

treated with antibiotics such as augmentine, zinat and many more. It never

really helped, with the antibiotics he was sick for at least 7-10 days. When

he was 2 years old he was hospitalized 4 times, for many days. He passed

nearly every possible test (the list is very long). The final diagnose was

that he has " phapa " . As far as we could understand the reason of this

disease is unknown, and the only treatment is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is

Dr. Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today

he has an attack 4 - 5 times a month!! A few hours before he has fever, he

becomes very unsettled, very niggled, he complains of sore knees and his

eyes become red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets

of 0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn't seem to be concerned at all. He

told us to continue with the Betnezol and that it will pass at the age of 7

or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils

out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would

really like to share this information ,learn more about phapa and hopefully

find a way to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Hi Avi

I sympathize with you having to watch a young child be sooo sick. Keep going

the way you are going and I would support the adenoids and tonsils coming

out out as an effort .. At least it may give you some relief!

new member

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is

7 and my young son is 3 years old. Since 3 months from the day he was born

he has been suffering from periodic fevers of about every 4 weeks. The fever

was always followed by swollen tonsils and swollen lymphatic glands. Until

he was 2 years old he was under the supervision of our family doctor, who

was always under the impression that he had some sort of a virus and was

treated with antibiotics such as augmentine, zinat and many more. It never

really helped, with the antibiotics he was sick for at least 7-10 days. When

he was 2 years old he was hospitalized 4 times, for many days. He passed

nearly every possible test (the list is very long). The final diagnose was

that he has " phapa " . As far as we could understand the reason of this

disease is unknown, and the only treatment is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is

Dr. Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today

he has an attack 4 - 5 times a month!! A few hours before he has fever, he

becomes very unsettled, very niggled, he complains of sore knees and his

eyes become red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets

of 0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn't seem to be concerned at all. He

told us to continue with the Betnezol and that it will pass at the age of 7

or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils

out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would

really like to share this information ,learn more about phapa and hopefully

find a way to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Hi Avi,

Not certain if you’ve had all the genetic tests done. Have you tried

Cimetidine? I hear if it works it can be can feel like a miracle. Normal

life, something we all long for. We started on it today and our fingers are

crossed. I’d hate to see any child have surgery if there is any other

option. Worth looking at in my eyes, and pretty risk free. Surgery though

there is always a risk between anesthesia and the procedure itself however

small the risk, not worth it to me until every other stone turned over. We

each though know what we or our family can deal with, or what feels right.

Wishing you the best.

Walton

(5)

BC Canada

Re: new member

Hi Avi

I sympathize with you having to watch a young child be sooo sick. Keep going

the way you are going and I would support the adenoids and tonsils coming

out out as an effort .. At least it may give you some relief!

new member

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is

7 and my young son is 3 years old. Since 3 months from the day he was born

he has been suffering from periodic fevers of about every 4 weeks. The fever

was always followed by swollen tonsils and swollen lymphatic glands. Until

he was 2 years old he was under the supervision of our family doctor, who

was always under the impression that he had some sort of a virus and was

treated with antibiotics such as augmentine, zinat and many more. It never

really helped, with the antibiotics he was sick for at least 7-10 days. When

he was 2 years old he was hospitalized 4 times, for many days. He passed

nearly every possible test (the list is very long). The final diagnose was

that he has " phapa " . As far as we could understand the reason of this

disease is unknown, and the only treatment is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is

Dr. Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today

he has an attack 4 - 5 times a month!! A few hours before he has fever, he

becomes very unsettled, very niggled, he complains of sore knees and his

eyes become red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets

of 0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn't seem to be concerned at all. He

told us to continue with the Betnezol and that it will pass at the age of 7

or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils

out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would

really like to share this information ,learn more about phapa and hopefully

find a way to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Hi Avi,

Not certain if you’ve had all the genetic tests done. Have you tried

Cimetidine? I hear if it works it can be can feel like a miracle. Normal

life, something we all long for. We started on it today and our fingers are

crossed. I’d hate to see any child have surgery if there is any other

option. Worth looking at in my eyes, and pretty risk free. Surgery though

there is always a risk between anesthesia and the procedure itself however

small the risk, not worth it to me until every other stone turned over. We

each though know what we or our family can deal with, or what feels right.

Wishing you the best.

Walton

(5)

BC Canada

Re: new member

Hi Avi

I sympathize with you having to watch a young child be sooo sick. Keep going

the way you are going and I would support the adenoids and tonsils coming

out out as an effort .. At least it may give you some relief!

new member

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is

7 and my young son is 3 years old. Since 3 months from the day he was born

he has been suffering from periodic fevers of about every 4 weeks. The fever

was always followed by swollen tonsils and swollen lymphatic glands. Until

he was 2 years old he was under the supervision of our family doctor, who

was always under the impression that he had some sort of a virus and was

treated with antibiotics such as augmentine, zinat and many more. It never

really helped, with the antibiotics he was sick for at least 7-10 days. When

he was 2 years old he was hospitalized 4 times, for many days. He passed

nearly every possible test (the list is very long). The final diagnose was

that he has " phapa " . As far as we could understand the reason of this

disease is unknown, and the only treatment is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is

Dr. Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today

he has an attack 4 - 5 times a month!! A few hours before he has fever, he

becomes very unsettled, very niggled, he complains of sore knees and his

eyes become red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets

of 0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn't seem to be concerned at all. He

told us to continue with the Betnezol and that it will pass at the age of 7

or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils

out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would

really like to share this information ,learn more about phapa and hopefully

find a way to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Hi Avi

My name is Ilana and I'm also from Israel. My son Gal has been fevering since

Feb 2004.

We will see Dr Padeh next October, hoping he will send us for genetic tests.

I'll send you my phone number so we can talk.

Ilana mom to Gal 5

Raz 3

Israel

avi doctors <doctorsa71@...> wrote:

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is 7

and my young son is 3 years old. Since 3 months from the day he was born he has

been suffering from periodic fevers of about every 4 weeks. The fever was always

followed by swollen tonsils and swollen lymphatic glands. Until he was 2 years

old he was under the supervision of our family doctor, who was always under the

impression that he had some sort of a virus and was treated with antibiotics

such as augmentine, zinat and many more. It never really helped, with the

antibiotics he was sick for at least 7-10 days. When he was 2 years old he was

hospitalized 4 times, for many days. He passed nearly every possible test (the

list is very long). The final diagnose was that he has " phapa " . As far as we

could understand the reason of this disease is unknown, and the only treatment

is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is Dr.

Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today he

has an attack 4 – 5 times a month!! A few hours before he has fever, he becomes

very unsettled, very niggled, he complains of sore knees and his eyes become

red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets of

0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn’t seem to be concerned at all. He told us

to continue with the Betnezol and that it will pass at the age of 7 or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would really

like to share this information ,learn more about phapa and hopefully find a way

to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Hi Avi

My name is Ilana and I'm also from Israel. My son Gal has been fevering since

Feb 2004.

We will see Dr Padeh next October, hoping he will send us for genetic tests.

I'll send you my phone number so we can talk.

Ilana mom to Gal 5

Raz 3

Israel

avi doctors <doctorsa71@...> wrote:

Dear group.

My name is Avi Doctors,I live in Israel. I have two children. My daughter is 7

and my young son is 3 years old. Since 3 months from the day he was born he has

been suffering from periodic fevers of about every 4 weeks. The fever was always

followed by swollen tonsils and swollen lymphatic glands. Until he was 2 years

old he was under the supervision of our family doctor, who was always under the

impression that he had some sort of a virus and was treated with antibiotics

such as augmentine, zinat and many more. It never really helped, with the

antibiotics he was sick for at least 7-10 days. When he was 2 years old he was

hospitalized 4 times, for many days. He passed nearly every possible test (the

list is very long). The final diagnose was that he has " phapa " . As far as we

could understand the reason of this disease is unknown, and the only treatment

is the Betnezol steroid.

There is one doctor in Israel that specializes in this disease. His name is Dr.

Shay Pade.

Since our son was 2 years old he has been suffering much more. Until today he

has an attack 4 – 5 times a month!! A few hours before he has fever, he becomes

very unsettled, very niggled, he complains of sore knees and his eyes become

red.

A few hours later the high fever appears (40c and above).

As mentioned the treatment is betnezol steroid. Each time he takes 3 tablets of

0.5 gr. each. The fever goes straight down, but later on he becomes hyper

active, cry's a lot, and in general really hard to deal with.

We had met Dr. Pade twice, and he didn’t seem to be concerned at all. He told us

to continue with the Betnezol and that it will pass at the age of 7 or 8.

Today our son is under the supervision of a children hematologist who is

concerned by the way things are looking and recommends taking his tonsils out.

We are very confused, helpless and are sure that something must be done.

Our son is really suffering (he is sick about 3 days a week) and we would really

like to share this information ,learn more about phapa and hopefully find a way

to help our son.

Thank you for reading this letter.

Avi doctors.

__________________________________________________

[Guest guest]

Betsy-

Is all this paid for by the state of Arizona? You are going to hard pressed to get all these services in Georgia without paying for them especially the in home services. Georgia unfortunately does not pay for services like a lot of other states do. You can apply for medicaid- Beckett deeming waiver, and that helps cover costs that aren't picked up by your insurance. However, that doesn't usually include ABA therapists in the home, ST, etc, in the home, or private schools, etc. respite in the home, etc. I am not trying to sound pessimistic about moving to Georgia. It just unfortunately does not help financially with spec. needs kids like a lot of other states do.

New Member

Hi,My name is Betsy and we live in AZ. My husband has a job transfer opportunity to Norcross, GA. Before we go further in the transfer process, we need to obtain some info about services available in Georgia for our 7 year old. He is severely autistic, non-verbal but has good receptive language. We also have an 8 year old gifted daughter who participates in soccer, hip hop dance and a mother/daughter activity group through the YMCA. Our questions are:What areas near Norcross are good areas?What school districts to try for or to avoid?Does the state provide respite or habilitation services?Any good behaviorial specialists, developmental psychs etc?Here's what we currently have that we are comparing to. We know it will be difficult to beat!120 hours habilitation / month (1:1 with a provider in the home)60 hours respite/month (babysitting)2 hours 1:1 speech in home per week1 hr 1:1 Occupational therapy in home per week4 hours of housecleaning (this was approved when my husband was fighting cancer and the state hasn't taken it away since he's only been in remission for 3 months.Please email me at betsy8626@...Thanks in advance for your help.Betsy

[Guest guest]

I live in Houston County and receive financial assistance from the state through the Macon United Cerebral Palsy. My daughter is 9 years old and diagnosed HFA. As far as I know, if your child has an any Autism diagnosis your family is eligible for this assistance. It covers an array of financial assistance, or reimbursement, from dental services, special clothing, specialized equipment, therapeutic services. and even recreational/alternative activities. I have heard that each region determines what services will be approved, not sure how true that is. I have received funding for the past 3 years and I am currently waiting for approval for this year's request. We use the funding mostly to pay for music lessons which falls under the recreational/alternative activities. Lani has been taking piano lessons for 3 years and it has helped her self esteem tremendously. She may be the last kid to be picked in PE but in music class she is the friend everyone wants on their team.

Betsy - my husband will be retiring next may from the AF and we will be moving to Tucson. Any advice?

Kiki (mom to Lani - 9yr old HFA and Kai - 11 yr old crazy tween)

Aloha Pumehana

New Member

Hi,My name is Betsy and we live in AZ. My husband has a job transfer opportunity to Norcross, GA. Before we go further in the transfer process, we need to obtain some info about services available in Georgia for our 7 year old. He is severely autistic, non-verbal but has good receptive language. We also have an 8 year old gifted daughter who participates in soccer, hip hop dance and a mother/daughter activity group through the YMCA. Our questions are:What areas near Norcross are good areas?What school districts to try for or to avoid?Does the state provide respite or habilitation services?Any good behaviorial specialists, developmental psychs etc?Here's what we currently have that we are comparing to. We know it will be difficult to beat!120 hours habilitation / month (1:1 with a provider in the home)60 hours respite/month (babysitting)2 hours 1:1 speech in home per week1 hr 1:1 Occupational therapy in home per week4 hours of housecleaning (this was approved when my husband was fighting cancer and the state hasn't taken it away since he's only been in remission for 3 months.Please email me at betsy8626@...Thanks in advance for your help.Betsy

[Guest guest]

In a message dated 10/6/2004 1:09:03 PM Eastern Daylight Time, mpati02@... writes:

You can go to the web site of Gwinnett Co, where Norcross is,

Based on personal information that I know of from a Special Education Lawyer,, Gwinnett county seems to have a vengeance for turning special needs parents into DFACS (Dept of family and children services) as well as having a lawyer on THEIR side of the school board that adamantly FIGHTS special services in schools!!

If it is at all possible,, dont move to that county, pick another nearby and commute to work. Also, if you can afford private schooling,, try to look at some of those in the area.

GA lags waaay behind in being able to give the services you mentioned,, I'd venture to say that you will have to pay privately to have all that you do where you are coming from.

Feel Free to email me offlist if you would like.

"What's right is greater than what's wrong, and what's wrong we can take on together.""The success of a child is the measure of the adults who surround him."Thanks,Gretchen House