for

October 15, 2006

My mom was diagnosed with FMF about 6 years ago. From

the time she was newborn and into her late 20's she

had fevers and sever stomache pain, three days of

every week. Sound familar?? Of course no one knew

back then what was wronge with her. She is 69 years

old now and still has an occational fever with

stomache pain (very mild though, compared to when she

was younger) Has your child been tested for FMF??

Just something to think about...

Cheri, mom to 11,

Galt, CA

--- missypruden <missypruden@...> wrote:

> Hello Everyone,

>

> My name is . I am a first time Mother of a

> wonderful 10

> month old, Tyler. He is a joy to raise, very

> inquisitive, and quick

> to learn.

>

> I am new to the group, just joined yesterday. I

> have begun reading

> as much as I can. I am trying to find answers to

> what is happening

> to our Son.

>

> I don't know what our Son has. He is 10 months old

> and has had

> recurring fevers that I have written on the Calendar

> for the last 5

> months. I know he had them before that, but was

> believing he was

> building his immune system in response to virus

> exposure.

>

> Tyler has fevers 103-105 every 13-15 days. They

> last for 3 days and

> go away. In between the episodes he is normal. He

> is a very jovial

> little guy, huge sense of humour already. Great

> developement, a

> little ahead of his age group in most things. It is

> as if he is

> never sick. Then it occurs again.

>

> Tylenol and Motrin give a little help, but they

> never bring his

> fever down all of the way. I have never noticed

> oral sores inside

> of his mouth. Although about 2 days before each

> episode, a spot

> appears on his cheek near his mouth. It is red and

> stays through

> the fever, then peels white, and disappears 1 to 2

> days after the

> fever is gone. The spot never weeps or gets puss.

> I thought it was

> a dry spot and put infant moisturizer on it. But

> then I began to

> notice it only came out directly before he became

> sick.

>

> He gets a bad stomach, won't hardly eat, and won't

> touch solid food

> at all. He does have some vomiting, but I believe

> it is from the

> medication. He has increasingly began to have a

> hard time taking it

> orally. We just found the Tylenol suppositories,

> FeverAll Brand,

> and used those on him with this last bout that ended

> last night.

> They worked much better, and were so much easier on

> his already bad

> stomach.

>

> He is still VERY alert ( he notices everything ),

> even when he is

> sick. He is just very weak and miserable. We have

> given him cool

> baths a few times. Sometimes they help, sometimes

> not very much.

> He never gets diarrhea, but he does tend to have gas

> and really

> smelly stools during this time.

>

> I am just trying to find answers, and hopefully a

> way to make it

> easier on him. Every 2 weeks this occurs, and it is

> very hard on

> him, and the family.

>

> Before I began searching the net, I had no idea that

> these diseases

> were out there! I guess I am not alone in that,

> from what I have

> read so far.

>

> We have been to 2 pediatricians about this. His

> first (and now

> again his current) MD told us he was just building

> his immune

> system. Because the fevers don't last more than 3

> days, it is just

> response to virus exposure. That sounded right at

> the time. Then

> we moved from California to Oregon where my Husband

> job changed to.

> A new Dr immediately had us run tests after we

> explained his

> recurring fevers. The results showed elevated WBC,

> there were other

> tests, cultures all negative. The Dr found nothing

> to show it was

> anything other than a virus. Unfortunately I do not

> know exactly

> what test were run. I am working on getting a copy

> of those

> results. We had blood work taken 3 times, same

> results. I didn't

> call her again when he had his next episodes. It

> seemed like

> torturing him for samples with no results being

> given.

>

> The closeness of the fevers has made it hard. Since

> then I have

> moved back to California. My Mother is helping me

> with Tyler. I

> will be seeing his first Dr about this, and I need

> to know what to

> ask him to check for. He originally held that it is

> all from virus

> exposure. But now with the added history, he may

> believe

> differently.

>

> Sorry for such a long Post! I will be reading as

> much as I can on

> this site. Thank You ALL for sharing! Hopefully

> from this site,

> and with the help of Open Minded Doctors, We can

> find out what our

> Son has.

>

> Thank You

> and God Bless you and your children

>

> Pruden

> Clearlake, California

> Northern California

> and sometimes

> Medford, Oregon

>

__________________________________________________

October 17, 2006

How did he do ?

SNIP----Some fantastic news I know you will agree - my 5 year old

autistic son had his first haircut at the barbers today!!!!!!!!!!!!

October 17, 2006

How did he do ?

SNIP----Some fantastic news I know you will agree - my 5 year old

autistic son had his first haircut at the barbers today!!!!!!!!!!!!

October 17, 2006

He done quite well - He had it done after watching Daddy have his cut, it took a bit of gentle force to get him in the chair but stayed there with my hand on his shoulder all the time. He only wriggled out of the chair twice and started moaning towards the end. I made sure the barber just used the clippers and a electric razor to tidy all the edges up, so the cut itself was very quick. It gives us something now to build up from.

Re: For

How did he do ?SNIP----Some fantastic news I know you will agree - my 5 year old autistic son had his first haircut at the barbers today!!!!!!!!!!!!

October 17, 2006

He done quite well - He had it done after watching Daddy have his cut, it took a bit of gentle force to get him in the chair but stayed there with my hand on his shoulder all the time. He only wriggled out of the chair twice and started moaning towards the end. I made sure the barber just used the clippers and a electric razor to tidy all the edges up, so the cut itself was very quick. It gives us something now to build up from.

Re: For

How did he do ?SNIP----Some fantastic news I know you will agree - my 5 year old autistic son had his first haircut at the barbers today!!!!!!!!!!!!

December 13, 2006

I'd like to second Kim's message. My own daughter has so many medical issues

that affect

her brain development... all I want to do is make her healthy so she can develop

the brain

she was supposed to have. So she can learn to speak, to read & write... to be

able to make

decisions for herself... so she can live an independent and self-fulfilled life.

Right now

she's 8 years old... and you'd swear she had the mind and abilities of a 2 year

old (but

without speech).

, we don't want to try to cure you or change who you are as a person. You're

an adult,

so you can choose your life and medical care as you see fit.

As for my daughter, she is who she is. Giving her proper health and the chance

to gain

new abilities and skills isn't going to negate any part of WHO she is. But it

will give her the

tools to CHOOSE what she wants to do in life... with a greater set of options

than that of

someone with severe autism. If we can recover her from Autism... she'll still be

the same

person...

Autism isn't who she is. It is just the cage that confines her. I just want to

open the door.

>

> Good morning, . I understand that you are an autistic adult/young

> adult. Now I see why you posted your messages. - my girls are

> not as fortunate as you. I would trade the world for them to have your

> abilities. I do not despise you as an autistic person. And I do not

> despise my daughters. I want to help them, not take away any part of

> their personalities that makes them special.

>

> Yours in peace,

>

> Kim Stagliano

>

December 13, 2006

is a true asset to our community, as is his wonderful mom Anne.

I had the honor of meeting him in D.C. this year.

, you remind me of my son whom I hope turns out as good as

you have.

>

> Good morning, . I understand that you are an autistic

adult/young

> adult. Now I see why you posted your messages. - my girls are

> not as fortunate as you. I would trade the world for them to have

your

> abilities. I do not despise you as an autistic person. And I do not

> despise my daughters. I want to help them, not take away any part

of

> their personalities that makes them special.

>

> Yours in peace,

>

> Kim Stagliano

>

December 13, 2006

Hi

Like the others I have a deep admiration of you. Not because you

have autism - but because of who you are...

I would caution you to be careful regarding your experience being

the " autism experience " . Your experience is the Dachel

experience...

I have several different disorders myself that make me unique in

some ways from the vast majority of the population. However, my own

uniqueness is based on " me " ; nothing more, nothing less.

- your uniqueness as being " Dachel " is ever so much more

special than any label you could ever carry! With all of my heart,

Hooker

> >

> > Good morning, . I understand that you are an autistic

> adult/young

> > adult. Now I see why you posted your messages. - my girls

are

> > not as fortunate as you. I would trade the world for them to

have

> your

> > abilities. I do not despise you as an autistic person. And I do

not

> > despise my daughters. I want to help them, not take away any

part

> of

> > their personalities that makes them special.

> >

> > Yours in peace,

> >

> > Kim Stagliano

> >

>

July 2, 2008

HI - My son was diagnosed with achalasia at age 12.He is now 15.

We took him to the Cleveland Clinic in Ohio to a specialist there

named Rice.(300+ surgeries)

My son has been doing great since then and hasnt stopped eating

either : ) Please let me know of any help I can be to you.IT is so

very difficult having children with this disease.I am also willing

to talk by phone if you like as well.You just let me know ok.

1-540-314-8656

Tonia

>

> Me AGAIN! (I'm avoiding pulling up some carpet in a bedroom,

looking

> for anything to do to avoid that mess.)

>

> I've heard back from Chavez, whose son Adam had surgery about

9

> months ago. He has gained about 25 pounds and grown a bunch since

> surgery. He is more than happy to talk to you at the numbers I

> emailed you privately. Also Peggy just got back to me and she

isn't

> traveling for a few weeks and is easily available. She is in

> Lompoc. I'm sure others here are happy to talk also. There are

some

> other Central CAians, I keep in touch with off the board, they

don't

> all check in here. Where are you? It helps to meet one of us in

> person. There are other Moms around, they must be with kids

during

> the fourth and not checking in, because usually if there is a

young

> child there is a lot of response. Tonia has great insight, so

does

> Carolyn. I'm sure they will contact you. When there is a child

it

> is so hard to imagine a parent dealing with it when the child

doesn't

> know what is really going on. There are several members here that

> developed achalasia as teens. No one as young as 4 comes to mind

> though. We have weird things happen that families don't

understand.

> Often water is more difficult than a hamburger. For me blended

food

> didn't really help, but for some it does. Some things just don't

> seem logical and you may gain some insight as to what she is going

> through.

>

> Okay... I'm done... the mid 90's dark teal green carpet is going

out

> the door. Then we have to decide what to do with that floor.

>

> Sandy

>

August 13, 2008

- said:

>

> BTW Dom also sells books and grains.

Yes, but it seems to me that it is a long way to ship from Australia

to the USA..when there are good suppliers here, like Merilyn,etc.

>

> What are you interested in milk or water or as I am both?

> in VT

>

I am interested in mostly water for the moment..as you are.. I would

like to do some things with fruit juices, also.

Marilyn suggested getting the water grains and building up the stock

(we will have to figure out how to do this as we go..i think )

and then we will have a nice batch to experiment with.

I think they feed on sugar..initially.

i am waiting as i type for my first batch of water grains to arrive so

that i can begin. Marilyn has some instructions with her products, so

i am going to follow them precisely..

That seems to me to be the way to go , first..

i am dizzy from all the reading i have been doing.

The book " wild fermentation' i read ( which goes WAAAY beyond the

scope of kefir ) said that almost any sweet juice can become a

slighltly fermented drink with the addition of kefir.. even cranberry

juice.and gatorade..!.But no formulas are given.

i personally do not think the alcohol contents are terribly high.

I think Dom does make a caution about using water kefir with some

herbs because the combination might make us a little 'high', but i

think in our initial experiments we need not fear this.

this is only from my ignorant point of view.. learning more every day.

as i guess you are.

have fun.!

alice

August 13, 2008

Hi Alice,

I am probably going to order from Merilyn But I need to

learn more. I did mention Dom selling books Etc. because there is more of a

choice there to pick from.

I¢m dizzy two from Dom¢s site. But am learning a lot (I

think)

Great and good luck,

in VT

From: alice magooey <alice.magooey@...>

Subject: Re: for

Date: Wednesday, August 13, 2008, 1:41 PM

- said:

>

> BTW Dom also sells books and grains.

Yes, but it seems to me that it is a long way to ship from Australia

to the USA..when there are good suppliers here, like Merilyn,etc.

>

> What are you interested in milk or water or as I am both?

> in VT

>

I am interested in mostly water for the moment..as you are.. I would

like to do some things with fruit juices, also.

Marilyn suggested getting the water grains and building up the stock

(we will have to figure out how to do this as we go..i think )

and then we will have a nice batch to experiment with.

I think they feed on sugar..initially.

i am waiting as i type for my first batch of water grains to arrive so

that i can begin. Marilyn has some instructions with her products, so

i am going to follow them precisely..

That seems to me to be the way to go , first..

i am dizzy from all the reading i have been doing.

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

September 5, 2008

I can tell you Cleveland Clinic did not follow the guidelines.

>

> Can you give us details on how your BP was measured at Mayo?

>

> Did they measure your arm circumference while standing to select

the

> cuff?

>

> Did you rest for 5 min with no talking by the staff or you?

>

> Did they ask if your pressure was different in your arms?

>

> Did they do BP in both arms? This should always be done when seen

by

> a new Dr.

>

> I was just assured by someone from Mayo's that they follow AHA

> guidelines but suspect they might not.

>

> Thanks,

>

> May your pressure be low!

>

> Clarence Grim BS, MS, MD

>

> High Blood Pressure Consulting

>

> Senior Consultant to Shared Care Research and Education Consulting,

Inc.

> Clarence Grim BS, MS, MD

>

> High Blood Pressure Consulting

>

> Senior Consultant to Shared Care Research and Education Consulting,

Inc.

>

September 5, 2008

Here is an opportunity for another paper from out site. Personal

observations on how BP is measured in the real world!

Perhaps we need to put together a standard grading form.

I am looking at Google spreadsheets now.

CE

On Sep 5, 2008, at 10:28 AM, mmcandmcc wrote:

> I can tell you Cleveland Clinic did not follow the guidelines.

>

> >

> > Can you give us details on how your BP was measured at Mayo?

> >

> > Did they measure your arm circumference while standing to select

> the

> > cuff?

> >

> > Did you rest for 5 min with no talking by the staff or you?

> >

> > Did they ask if your pressure was different in your arms?

> >

> > Did they do BP in both arms? This should always be done when seen

> by

> > a new Dr.

> >

> > I was just assured by someone from Mayo's that they follow AHA

> > guidelines but suspect they might not.

> >

> > Thanks,

> >

> > May your pressure be low!

> >

> > Clarence Grim BS, MS, MD

> >

> > High Blood Pressure Consulting

> >

> > Senior Consultant to Shared Care Research and Education Consulting,

> Inc.

> > Clarence Grim BS, MS, MD

> >

> > High Blood Pressure Consulting

> >

> > Senior Consultant to Shared Care Research and Education Consulting,

> Inc.

> >

September 5, 2008

My arm circumference was not measured although the nurse may have eyeballed

it and selected a cuff based on her estimate.

They did not ask about pressure in different arms

She took the pressure in only the RIGHT arm.

I sat quietly for at least five minutes while the nurse entered data, etc.

She put the cuff on and went on asking questions. She told me the cuff

would measure six pressures and then give her an average. The measurement

was about 10 - 15 pts higher than my measurements at home, but they are

always higher in the doc's office. Additionally, I measure the left arm at

home. The measurement was done with an automatic device.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Can you give us details on how your BP was measured at Mayo?

Did they measure your arm circumference while standing to select the

cuff?

Did you rest for 5 min with no talking by the staff or you?

Did they ask if your pressure was different in your arms?

Did they do BP in both arms? This should always be done when seen by

a new Dr.

I was just assured by someone from Mayo's that they follow AHA

guidelines but suspect they might not.

September 6, 2008

Hey! We all need your sanity hints! Looking forward to the post.

ES

>

> Hi, I tried to reply to your email but it never would let me. Here

is

> the message I tried to send ya...You are welcome...that's a good idea

> to build ur own info. I just try to remember some of it...lol. your

> idea is way better since my brainfog takes over! I'm glad you had a

> good day...they keep the hope alive. The eyedrops are ROHTO V ICE

> eyedrops(blue) walmart $5...I tell you what, if u are interested I'll

> sit down tomorrow and list the stuff I do that has saved my sanity. I

> can actually sit at the laptop and not get mauled like before I knew

> what was goin on. Of course, my hubby thought I was crazy....prolly

> still thinks so, lol. BUT, I know when something is biting me! or

> crawling on me. I've always been VERY sensitive. I learned how to

> tune it out at a young age but now I find that I should listen to

> it. If ur interested in my crazy lil' sanity keepers, I'd be glad

> to tell ya. ttyl, chasity

>

September 6, 2008

Please tell e about:

The eyedrops are ROHTO V ICE

& gt; eyedrops(blue) walmart $5...I tell you what, I am interested , & also in

all the tips you have to beat the bug.

I HAVE TO GET MY LIFE BACK. PLEASE HELP ,please

thank you

Bill

itsjustmedammitgrl wrote:

> Hi, I tried to reply to your email but it never would let me.

Here is

> the message I tried to send ya...You are welcome...that' s a good idea