hello

January 30, 2006

What is your major?? *being nosy*

Lori

wrote:

> Dr. Ashwal huh? I'm supposed to be transferring from Riverside

> Community College to Cal-State San Bernardino for the fall, at which

> point I've decided to live on campus in San Bernardino, so maybe if my

> Riverside neurologist hasn't figured this out before I transfer, then

> I can get IEHP to assign me to Ashwal.

>

> Sincerely,

> R.

>

January 30, 2006

English/Language Arts. I want to be a high school teacher.

Those Two <those2@...> wrote: What is your major?? *being nosy*

Lori

wrote:

> Dr. Ashwal huh? I'm supposed to be transferring from Riverside

> Community College to Cal-State San Bernardino for the fall, at which

> point I've decided to live on campus in San Bernardino, so maybe if my

> Riverside neurologist hasn't figured this out before I transfer, then

> I can get IEHP to assign me to Ashwal.

>

> Sincerely,

> R.

>

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January 31, 2006

Hello - That is with me they have not found none of the mutations in me

but they put me on colchine and I have did well on it. As for my son Nick we

tried him on colchine and it did nothing for him, he still had fevers and all

that and he was on it for months. Right now were in the process to see if

Dr.Kastner would see him and have him on the study. I haven't heard back yet.

They called a week ago saying they would be viewing his records last week and

would be in contact, I haven't heard nothing as of yet. As for Nicki I have been

reading the post about her and they have not been positive. I see some people

saying it could take 18 months to get to the NIH clinic that is a long time to

wait. My son I worry so much about him. He is so pale sucken and dark eyes he

just don't look good. Since he had his toncils out we haven't had fever but alot

of joint pain, abdomen pain and other symtoms just not fevers. My middle child

has been braking out in bad canker sores in his mouth and

feeling fatiged but no fevers could that mean something too? I broke out as

well with canker sore and I have been aching every where lately. Does any one

know how long the waiting list is for the clinical studies?

Thanks so much everyone

Bombardier <petish44@...> wrote:

Hello Sacora! My son has been diagnosed with 'Clinical' FMF. That means that

Dr. Kastner is convinced that PJ has FMF even though so far they have found none

of the known mutations in him. He has responded very well to the Colchicine

which is another indicator for FMF.

You know, if you have been on Colchicine for the past few years and it has

helped and now your son has these periodic fevers, to me personally, that just

screams out FMF for your son. Have you tried to get him into the fever study? I

would do so as soon as possible, if only to be tested. I'll bet that since NIH

has tested you and found you to be probable FMF, Dr. Kastner would be very

interested in seeing your son.

Has he ever tried Colchicine? If you do try to get him into the study and find

that you will have to wait a few months to get in, maybe you could see if one of

his docs would be willing to try Colchicine for him.

I don't believe that you can " get immune " to the Colchicine but I know that

for my son, he has periods where it is not as effective for him as others. The

episodes try to come back more often or a little stronger. I think that that is

just the nature of the disease. He too, is still growing and as he does, he

needs to have his dose increased.

I wish I could be of more help! As I said, I think that you both need to go

be seen at NIH, he to be tested and you to be followed up on. I want to be able

to say, 'go ahead, call Nicky, she'll help guide you', but if you've been

reading previous posts, it may not be that simple. Try! Good luck.

Pat

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

Bring words and photos together (easily) with

PhotoMail - it's free and works with .

January 31, 2006

Sacora:

I am so sad to hear that you and two of your children are not

feeling well.

As for getting into the study at the NIH, everyone has a different

experience and time frame. Some people say it takes up to 18

months, which may be true. However, I think that is on the long

side and not everyone waits that long. I heard within 6 weeks of

mailing my application and medical records and then got an appt. in

2 weeks. I recommend to anyone applying - obtain the required

medical records from your doctor and mail them yourself with the

application. That way you know when everything was sent out. Your

doctor's office may say they will send them out on a certain date

and it never gets done and you are waiting to hear . . . Also when

the NIH calls, take the first available appt. they offer that you

can make it to.

Good luck hearing - and don't be afraid to call and check the status

of your application.

in Tampa with Jonah, (awaiting genetic testing results),

almost 5 years old.

> Hello Sacora! My son has been diagnosed with 'Clinical' FMF.

That means that Dr. Kastner is convinced that PJ has FMF even though

so far they have found none of the known mutations in him. He has

responded very well to the Colchicine which is another indicator for

FMF.

> You know, if you have been on Colchicine for the past few years

and it has helped and now your son has these periodic fevers, to me

personally, that just screams out FMF for your son. Have you tried

to get him into the fever study? I would do so as soon as possible,

if only to be tested. I'll bet that since NIH has tested you and

found you to be probable FMF, Dr. Kastner would be very interested

in seeing your son.

> Has he ever tried Colchicine? If you do try to get him into the

study and find that you will have to wait a few months to get in,

maybe you could see if one of his docs would be willing to try

Colchicine for him.

> I don't believe that you can " get immune " to the Colchicine

but I know that for my son, he has periods where it is not as

effective for him as others. The episodes try to come back more

often or a little stronger. I think that that is just the nature of

the disease. He too, is still growing and as he does, he needs to

have his dose increased.

> I wish I could be of more help! As I said, I think that you

both need to go be seen at NIH, he to be tested and you to be

followed up on. I want to be able to say, 'go ahead, call Nicky,

she'll help guide you', but if you've been reading previous posts,

it may not be that simple. Try! Good luck.

>

> Pat

>

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

> Bring words and photos together (easily) with

> PhotoMail - it's free and works with .

>

January 31, 2006

lynne llerrom wrote:

from dale,

Good to see you back, Lynne. How's sis?

In His service,

dale

February 2, 2006

hello my name is julie i have a daughter with sma type 1to type 2 she as just

spent the last 9 weeks in hospital on a lifesurrport machine,she is ok now but

was touch and go.i just dont know how docs can tell u its the end of the line

and to turn surrport off it just shows u what sma kids can do

<laotianrose@...> wrote: Hi everyone, my name is and

I'm 21 and there is a very real possibility that I have Type 3 Spinal Muscular

Atrophy. When I was 11, I was misdiagnosed with Syringomyelia. I have all of

the symptoms and motor skill problems but my neurologist must do a biopsy to be

sure. More than likely, I do have SMA. I can stand up on my own but with

extreme difficulty when I'm sitting on the floor. My shoulders are not very

functional, I have much difficulty in raising my outstretched arms up to my

chest or higher. I'm also quite talkative so I hope someone else here is too.

Sincerely,

R.

February 2, 2006

Sacora,

You should ask Bev or Nikki and Rhonda the coordinator for you to stay at

the Childrens Inn...

www.childrensinn.org

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

February 3, 2006

-

Hello I did get an appointment but I had to take the second choice so

I can make all the arrangements and with me being across the United

States it has been hard so far unless I want to pay for them.I wish

we could of went on their first choice but I don't think i can have

finances and all that ready.

Take care

Thank you

Sacora

-- In , " nchad1967 " <nancy.chad@...> wrote:

>

> Sacora:

>

> I am so sad to hear that you and two of your children are not

> feeling well.

>

> As for getting into the study at the NIH, everyone has a different

> experience and time frame. Some people say it takes up to 18

> months, which may be true. However, I think that is on the long

> side and not everyone waits that long. I heard within 6 weeks of

> mailing my application and medical records and then got an appt. in

> 2 weeks. I recommend to anyone applying - obtain the required

> medical records from your doctor and mail them yourself with the

> application. That way you know when everything was sent out. Your

> doctor's office may say they will send them out on a certain date

> and it never gets done and you are waiting to hear . . . Also when

> the NIH calls, take the first available appt. they offer that you

> can make it to.

>

> Good luck hearing - and don't be afraid to call and check the

status

> of your application.

> in Tampa with Jonah, (awaiting genetic testing results),

> almost 5 years old.

>

> > Hello Sacora! My son has been diagnosed with 'Clinical' FMF.

> That means that Dr. Kastner is convinced that PJ has FMF even

though

> so far they have found none of the known mutations in him. He has

> responded very well to the Colchicine which is another indicator

for

> FMF.

> > You know, if you have been on Colchicine for the past few years

> and it has helped and now your son has these periodic fevers, to me

> personally, that just screams out FMF for your son. Have you tried

> to get him into the fever study? I would do so as soon as possible,

> if only to be tested. I'll bet that since NIH has tested you and

> found you to be probable FMF, Dr. Kastner would be very interested

> in seeing your son.

> > Has he ever tried Colchicine? If you do try to get him into the

> study and find that you will have to wait a few months to get in,

> maybe you could see if one of his docs would be willing to try

> Colchicine for him.

> > I don't believe that you can " get immune " to the Colchicine

> but I know that for my son, he has periods where it is not as

> effective for him as others. The episodes try to come back more

> often or a little stronger. I think that that is just the nature of

> the disease. He too, is still growing and as he does, he needs to

> have his dose increased.

> > I wish I could be of more help! As I said, I think that you

> both need to go be seen at NIH, he to be tested and you to be

> followed up on. I want to be able to say, 'go ahead, call Nicky,

> she'll help guide you', but if you've been reading previous posts,

> it may not be that simple. Try! Good luck.

> >

> > Pat

> >

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

> > Bring words and photos together (easily) with

> > PhotoMail - it's free and works with .

> >

February 3, 2006

Sacora, I am sooo happy for you and ! I honestly feel that both you and

your son are headed in the right direction by being seen at NIH!

Pat Bombardier, mom to PJ, 13yo, Virginia

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

Relax. virus scanning helps detect nasty viruses!

February 3, 2006

Thank you , I hope this will give us some answers but it also scarries

me too. Thank you for being here that is great. I think we are too heading in

the right direction. Again thanks everyone for supporting me and my son.

Sacora mom of Nicolas 12

Redmond, OR

Bombardier <petish44@...> wrote:

Sacora, I am sooo happy for you and ! I honestly feel that both you

and your son are headed in the right direction by being seen at NIH!

Pat Bombardier, mom to PJ, 13yo, Virginia

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

Relax. virus scanning helps detect nasty viruses!

February 3, 2006

-Hi Fran-

I was wondering said that they let the Children's Inn know

about the appointment and makes the reservations for us is that true?

I have seen some postings on her and I don't want to get there and

be stuck with no place to stay. What arrangements do I need to do

any?

thanks so much

Sacora

-- In , " Fran Bulone " <fbulone@...> wrote:

>

> Sacora,

> You should ask Bev or Nikki and Rhonda the coordinator for you to

stay at

> the Childrens Inn...

> www.childrensinn.org

> Fran

> Fran A Bulone

> Mom to ph 6 yrs old

> Waxhaw, NC

> Owner & Moderator Group

>

February 9, 2006

At 10:41 PM 2/8/2006, you wrote:

>hi you all,

>my name is debora leia, i'm from brazil but live now in miami. i love

>natural fragrances, specially because i am alergic to the majority of

>synthetic ones.

>i'm really new in the art of blending essential oils, i think i don't

>know any thing really and hope to learn a lot in this group. have many

>question, but now i just wanted to say hello.

>peace

Hi Debora

I'm in Miami, too, and am synthetic to *some* synthetics, enough that I

avoid going near perfume counters in stores.

I recommend you get some good books, sample a lot of raw aromatics, and

start systematically training your nose. Read through the archives, and

you'll find it's like a mini-lesson in perfumery.

Most of all, have fun, experiment and enjoy yourself.

Anya

http://.com

The premier site on the Web to discover the beauty of Natural Perfume

/

Join to study natural perfumery

February 11, 2006

> >hi you all,

> >my name is debora leia, i'm from brazil but live now in miami. i love

> >natural fragrances, specially because i am alergic to the majority of

> >synthetic ones.

> >i'm really new in the art of blending essential oils, i think i don't

> >know any thing really and hope to learn a lot in this group. have many

> >question, but now i just wanted to say hello.

> >peace

>

> Hi Debora

> I'm in Miami, too, and am synthetic to *some* synthetics, enough that I

> avoid going near perfume counters in stores.

>

> I recommend you get some good books, sample a lot of raw aromatics, and

> start systematically training your nose. Read through the archives, and

> you'll find it's like a mini-lesson in perfumery.

>

> Most of all, have fun, experiment and enjoy yourself.

>

> Anya

> http://.com

> The premier site on the Web to discover the beauty of Natural Perfume

> /

> Join to study natural perfumery

>

Hi Anya

i am doing that already. actually i am in the process of opening a

small spa and gift shop in Miami Beach. I am going to sell natural and

organic, and environmentally safe products. We also intend to have

workshops about aromatherapy, wellness, natural fragrances and other

related subjects.

Do you have a store in Miami? If so, what is your experience with

people here?

thanks

débora

February 12, 2006

At 11:03 AM 2/11/2006, you wrote:

> >

>Hi Anya

>i am doing that already. actually i am in the process of opening a

>small spa and gift shop in Miami Beach. I am going to sell natural and

>organic, and environmentally safe products. We also intend to have

>workshops about aromatherapy, wellness, natural fragrances and other

>related subjects.

>Do you have a store in Miami? If so, what is your experience with

>people here?

>thanks

>débora

Hi débora:

There is a receptive audience there for naturally-fragranced products, so

I'm sure you'll do well. Let me know when you open. By experience with

people, well, all I had was with the owners, as I'm not in retail. The

tourists and Beach residents are wonderful, from my perspective, which is

the feedback from the store owners (and hotel owners.)

Anya

http://.com

The premier site on the Web to discover the beauty of Natural Perfume

/

Join to study natural perfumery

February 15, 2006

Hi -

I believe my daughter may have . She will be 4 yrs old on March 17th,

2006 and for the past two and a half years has had the monthly fevers that

are only diagnosed as " viral. " I found out about by doing a web

search on her symptoms.

>>>Some background: I adopted her from China when she was 10 months old and

therefore have no medical history from her family and minimal from the

orphanage, except that she was " healthy. " She has tubes in her ears

(since age 15 mos.) due to frequent ear infections.

She is otherwise very healthy and physically/developmentally on track (or

ahead) in some areas. She has been having the fevers every three weeks now

for the past 7 months along with swollen tonsils and sometimes mouth sores.

She has never had strep throat, although many times I've had her throat

cultured to rule that out.

I'm concerned because it's very frustrating to watch her continue in this

cycle with no apparent cause or treatment. I am very interested in seeing

if a tonsillectomy would improve things. >>>

Betsy,

Take time to browse the archives and check out the files.

There are more Periodic Fever disorders than ... although rare we have

many children here who came to us thinking or being mis-diagnosed with

... and with the new genome project and the ability for the research

centers to isolate mutations which are the culprits causing some of the

periodic fever syndromes... diagnosing has become much more complex.

Read the past few postings... we have had a good amount of new members and

we have discussed the need for DNA studies.

By the way... my angel was adopted domestically too!! <smile>

God Bless

Fran

February 19, 2006

Being scared is good. It'll motivate you to do the right things.

I wasn't scared enough. It took years for the reality to sink in

and for me to realize that I was on death's door. I still consider

it more of a nuisance than a life threatening condition. (except

when I feel really sick because the heart isn't working properly)

Good luck with your doctor visit. Write down your questions

and when he/she answers your questions, right down the answers.

I keep a notebook listing everything....daily weight, blood pressure,

medications, how I'm feeling, and bring that to the appointments.

My short term memory seems to be fading.

Mike

On Feb 18, 2006, at 2:21 PM, Lansing wrote:

> Last Tues, Feb 14th, I had my procedure. I now an a joey and scared of

> being a kangaroo. My injection fraction was 25% so that's haow I

> became a candidate.

>

> Well I see my doctor on Monday the 20th at noon and he will then give

> me all the info I need, I hope. Glad I ran across this list. Hope I

> don't come across as being domb but I didn't realize just how scared I

> am until I read this. Anyway hope to learn from you guys.

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

February 20, 2006

have you contacted mercy medical????

here is their website sacora

http://www.mercymedical.org/

vanessa mom to kiara 5 off to nih march 7

Hello

Hello Everyone

Nicolas is getting sick again with his glands swelling, face puffy,

headaches, sore throat, all that. I havent been feeling well either so

maybe were catching a virus or something. So is everyone getting all

the arrangements done for their trips to the NIh. I still haven't heard

nothing about flights I know alot of them were saying they only travel

1000 miles and for me it is over 3000 miles, so i am not sure yet about

how we are flying there. Any advice? So is there any one that lives

close to Oregon in the group?? I thank those who I have chatted with

and has given me advice thanks. I wish I could meet with some of you

that are going to the NIH that would be very nice. Have a good day and

take care all.

Sacora mom of Nicolas 12

February 21, 2006

-Thanks Vanissa

I will see what they say if they help with that. Thanks so much

Sacora

-- In , " Bisson " <proudmom@...> wrote:

>

> have you contacted mercy medical????

>

> here is their website sacora

> http://www.mercymedical.org/

>

> vanessa mom to kiara 5 off to nih march 7

> Hello

>

> Hello Everyone

> Nicolas is getting sick again with his glands swelling, face

puffy,

> headaches, sore throat, all that. I havent been feeling well

either so

> maybe were catching a virus or something. So is everyone getting

all

> the arrangements done for their trips to the NIh. I still haven't

heard

> nothing about flights I know alot of them were saying they only

travel

> 1000 miles and for me it is over 3000 miles, so i am not sure yet

about

> how we are flying there. Any advice? So is there any one that

lives

> close to Oregon in the group?? I thank those who I have chatted

with

> and has given me advice thanks. I wish I could meet with some of

you

> that are going to the NIH that would be very nice. Have a good

day and

> take care all.

> Sacora mom of Nicolas 12

>

March 4, 2006

> >

> > hi-i am new here.i have a 16 year old son with severe ocd. he

has

> been

> > in treatment for many years-recently a 30 day stay at the

menninger

> > clinic in texas. he has improved a great deal over the last

couple of

> > months as he is really commited to doing treatment now.he is

also

> > attending a special high school here that has a theraputic

component

> > to it.his ocd has to do with perfectionism and scrupulosity.this

is

> > the first time i have lokked for support from other parents

going

> > through this.it has been a long journey.i also have a 21 year

old son

> > who is bi-polar. it seemed as soon as we got him good treatment

and

> > feeling much better, the ocd began in earnest for our 16 year

old! i

> > am always interested in others experiances and hopefully can

help

> > others with information i might have. thank you, mary

> >hi! thank you for welcoming me. i have heard that rogers memorial

has a wonderful program also. tony learned a lot at menninger- but

was also very depressed when the reality of it all hit him. he was

very homesick-we live in pa. he was very willing to go-but i think

he thought at first it was going to be a " quick fix " . when he came

home he regressed some at first-which they say is not uncommon. i

have learned that eating disorders are a form of ocd.i have had

bulimia for 24 years and have my first therapy appointment on

monday! i will be happy to share what info i find out about it all.

mary

>

March 4, 2006