Cheri Payton FMF - Re: Pruden

August 21, 2007

Hi when do you go back to ucsf. we go on Oct. 25 to see probably the

same dr. thanks char.

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August 22, 2007

walnut creek. and boy is it hot today char

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August 22, 2007

Hi ,

Good to hear from you!

I have heard of Clearlake, but never been there. I'm sorry you have to drive so

far for your sons doc. I feel so fortunate that my sons ID doc is only 20

minutes away. He is wonderful too. I have his email address so I can ask

questions or let him know is sick. Dr. Belko is his name.

was tested for Traps and FMF. I think he was only tested for one of the

FMF mutations. Both came back neg. I still think there is a very good chance

of him having FMF, since my mom does. Time will tell...I guess.

Hope you and your son are having a good week.

Cheri in Northern California

missypruden <missypruden@...> wrote: Hi

Cheri,

We live in Clearlake. It's about an hour and a half above Santa

. It is a small county, a lot of people don't know where it is.

We are known for the Lake and Konocti Harbor Resort and it's many

concerts. It is good to hear from someone else on the West Coast,

and in California. When I first signed on and tried to find out

about doctor's in the area I couldn't find anyone who was even in

California. We eventually found a good Pediatrician who referred us

to UC San Francisco....it is quite a drive (almost 4 hours) but the

trip we made was well worth it.

We recently had DNA testing done for FMF and are waiting for the

results. I wonder if this could be what our son has. He has stomach

issues with his fevers, not diarrhea but a lot of gas and eating

issues. They come every 2 weeks, and last for 3 days. I read that

they have discovered so many mutations related to FMF (approximately

80 different ones) that the company only tests for where 95% of the

most common are identified. So a negative result does not

necessarily mean that a mutation is not there. They are finding that

certain mutations occur in high frequency in specific ethnic

populations. One of the most common mutations for American patients

is found in North African Jewish populations.

All of the information is interesting, but it can become so

overwhelming trying to determine how it relates and can help our

children.

I am glad to hear that your mother was able to find out what had

plagued her so unexplainably all those years. It doesn't ease the

condition, but atleast there is peace of mind in knowing you are not

crazy!

Best of Luck with your son,

Pruden

Mom to Tyler 20 months - undetermined PFS since 2 months

Northern California

> >

> > Does anyone have any advice about Genetic Testing and Insurance

> > Companies? I'm going to have my Dr. submit a letter to my

insurance

> > about coverage for genetic testing to be done. I've heard it's

> > expensive? Is it just blood that they take or will it be more

> intrusive?

> > Any advice would be greatly appreciated!

> >

> > Thanks!

> > Amy- Mom to -Age 2

> >

>

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

> Shape in your own image. Join our Network Research Panel

today!

>

August 22, 2007

Hi Char,

Where do you live? If you take your child to a doc in SF than you must live in

Northern CA...right?

Cheri in Northern CA

sheenhicks@... wrote: Hi when do

you go back to ucsf. we go on Oct. 25 to see probably the

same dr. thanks char.

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August 22, 2007

not far love it down there in santa cruz out side of san jose .

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August 22, 2007

oh the flea market in san jose is the best around . loveeeeee ittttttttt

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August 22, 2007

the winchells donuts closed down here too. and i just got over the flu too.

had Chinese tonight first food in four days besides soda and crackers

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August 22, 2007

I grew up in San ...Almaden Valley. I think that's somewhat near Walnut

Creek. Moved to MN when I was 17 years old.

Amy- Mom to -age 2

sheenhicks@... wrote:

walnut creek. and boy is it hot today char

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August 22, 2007

That's the biggest part about the cannot catch any thing that goes around.

My son has never in his 13 years even had the big d word. But if he gets any

trauma out pops an infection.

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August 22, 2007

i know i grew up in san jose for a while till i was in sixth grade. my dad

used to work down the street from it ... havn't been there in four years no

time anymore. when i was a kid we went to allam rock can't spell sorry ..

played in the creeks forever in the summer.

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August 22, 2007

that crazy wild mouse too. i would never go on it because it went over the

beach. afraid it would fall off ....

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August 22, 2007

don't want to show my age lol but when i was a kid we had a woody. every

weekend to the beach ...

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August 22, 2007

I live in San . I used to live in the Almaden Valley - I live on

the other side of San now. Walnut Creek is about an hour or less

drive from here. Clear Lake is about a four hour drive. We are going

there in about 4 weeks for a little vacation.

The little girl I care for lives in San . We had a terrible time

getting a diagnosis here too. Her regular doctor kept saying it was

only a virus - every single month for almost a year. Finally they took

her to another doctor who wouldn't have known what was but had

just the weekend before been to a seminar about it and knew what it was

right away because she fit the pattern so well. We finally knew why she

had the fevers. But there are few doctors in any area, it seems, who

know what this is...

It is hot here today!!!

Joanne caretaker to Kimi 3

Amy Scala wrote:

>I grew up in San ...Almaden Valley. I think that's somewhat near Walnut

Creek. Moved to MN when I was 17 years old.

>

> Amy- Mom to -age 2

>

>sheenhicks@... wrote:

> walnut creek. and boy is it hot today char

>

August 22, 2007

funny alfonso's is starting tonight. his back of his neck glands are

starting to swell . its nice to think about something else for a while thinks

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August 22, 2007

lol love it

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August 22, 2007

You will think I'm crazy...But, please eat Togo's, Round Table Pizza, Its-It

Ice-Cream Sandwiches, and Winchell's Donuts for me ...LOL! I miss the food out

there! We don't have that stuff here!

Joanne <joanne4@...> wrote: I live in San . I used to

live in the Almaden Valley - I live on

the other side of San now. Walnut Creek is about an hour or less

drive from here. Clear Lake is about a four hour drive. We are going

there in about 4 weeks for a little vacation.

The little girl I care for lives in San . We had a terrible time

getting a diagnosis here too. Her regular doctor kept saying it was

only a virus - every single month for almost a year. Finally they took

her to another doctor who wouldn't have known what was but had

just the weekend before been to a seminar about it and knew what it was

right away because she fit the pattern so well. We finally knew why she

had the fevers. But there are few doctors in any area, it seems, who

know what this is...

It is hot here today!!!

Joanne caretaker to Kimi 3

Amy Scala wrote:

>I grew up in San ...Almaden Valley. I think that's somewhat near Walnut

Creek. Moved to MN when I was 17 years old.

>

> Amy- Mom to -age 2

>

>sheenhicks@... wrote:

> walnut creek. and boy is it hot today char

>

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Games.

August 22, 2007

Hi Amy

OMG you don't have any of those where you are? Yikes! We have a Togo's

and Round Table a couple of blocks away and I am thankful for that since

I do child care I don't always have time to cook. Believe it or not the

Winchell's Donuts near here actually closed. We couldn't believe it -

how can you not make it in a donut shop. The Its It Ice Cream factory

is by the freeway on the way to San Francisco - we see it every time we

go to San Fran when my son does a show up there. I will think of you

and eat that stuff in your honor! :-) A lot of people miss See's

Chocolates too - it is a California based business too. But I guess you

can buy See's online now. We may be having Togo's for dinner tonight.

My husband and I had the flu the last four days (got it from the kids)

and I feel decent enough to actually eat tonight. Yesterday was our

anniversary and we had chicken soup.... how sad is that...

Take care

Joanne

Amy Scala wrote:

>You will think I'm crazy...But, please eat Togo's, Round Table Pizza, Its-It

Ice-Cream Sandwiches, and Winchell's Donuts for me ...LOL! I miss the food out

there! We don't have that stuff here!

>

>Joanne <joanne4@...> wrote: I live in San . I used to

live in the Almaden Valley - I live on

>the other side of San now. Walnut Creek is about an hour or less

>drive from here. Clear Lake is about a four hour drive. We are going

>there in about 4 weeks for a little vacation.

>

>The little girl I care for lives in San . We had a terrible time

>getting a diagnosis here too. Her regular doctor kept saying it was

>only a virus - every single month for almost a year. Finally they took

>her to another doctor who wouldn't have known what was but had

>just the weekend before been to a seminar about it and knew what it was

>right away because she fit the pattern so well. We finally knew why she

>had the fevers. But there are few doctors in any area, it seems, who

>know what this is...

>

>It is hot here today!!!

>

>Joanne caretaker to Kimi 3

>

>Amy Scala wrote:

>

>>I grew up in San ...Almaden Valley. I think that's somewhat near Walnut

Creek. Moved to MN when I was 17 years old.

>>

>>Amy- Mom to -age 2

>>

>>sheenhicks@... wrote:

>>walnut creek. and boy is it hot today char

>>

>

August 22, 2007

You won't believe it but they are closing down that flea market soon.

the owners are going to develop the land. Being it is in Silicon Valley

here they decided it was just worth more money than they could pass up

so we will be losing it. Sad... it has been there for so many years.

It has gotten huge, though. Not sure of exactly when they will close

down but it won't be long.

Joanne

sheenhicks@... wrote:

>oh the flea market in san jose is the best around . loveeeeee ittttttttt

>

August 22, 2007

Where are you located - are there other Winchell's donuts around? This

flu is bad. Made me feel weak and rung out. Stomach - awful! I was

actually able to eat a sandwich tonight and so far I am okay.

You know what I noticed about my child (she is one of my day care

children) - she seldom catches any of these other things that go

around. It is like her immune system is very strong and other than her

fevers she rarely gets much of anything. Once or twice a winter she

will get a little cold but seldom does she get these ugly viruses that

go through the rest of the group. Any of you noticed that with your

children. That they seem to have a very strong immune system

other than dealing with the fevers - which I know are not a germ or

virus at all. Just a syndrome... a nasty one but a syndrome.

Joanne

sheenhicks@... wrote:

>the winchells donuts closed down here too. and i just got over the flu too.

> had Chinese tonight first food in four days besides soda and crackers

>

August 22, 2007

Santa Cruz just celebrated their 100th birthday - it is one of the only

original boardwalks left anywhere in the USA. They still have many of

the original things on the boardwalk. They still have the original

Carousel - one of the most beautful Carousels ever made. And it is kept

up beautifully - you would never know it is 100 years old.

Joanne

sheenhicks@... wrote:

>not far love it down there in santa cruz out side of san jose .

>

August 22, 2007

Yes... the boardwalk was my Summer hang-out in my teen years .

sheenhicks@... wrote: not far love it down there in santa cruz out

side of san jose .

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August 22, 2007

That is where we ALL hung out in our teen years....

Joanne

Amy Scala wrote:

>Yes... the boardwalk was my Summer hang-out in my teen years .

>

>sheenhicks@... wrote: not far love it down there in santa cruz out

side of san jose .

>

August 22, 2007

I'm so jealous that you are having Togo's!!!! I wonder if Winchell's went out of

business? Last time I visited there both locations I went to were shut down too!

Yes, See's Candies was a staple in my family. Every Easter basket was filled

with See's chocolate eggs, Christmas stockings filled with chocolate Santa's,

and Valentine's boxes were the best!!! We now have stands in the malls here

during the Holidays. But, it's not the same as the smell of a See's Store with

fresh candy! Fond memories!

Have a good night ladies! 's fever episode ended today. Only 3 days

long...on Singulair..max temp was 103 degrees! I think we might have a

comfortable night of sleep tonight!

Take Care,

Amy- Mom to -age 2- Minnesota

Joanne <joanne4@...> wrote: