NIH Contact RN for Dr. Kastner is Beverly again

[Guest guest]

Beverly Barham, R.N., B.S.N.

Nurse Specialist (Research)

Office of the Clinical Director

Phone: 301-594-2494; 888-996-4267

Fax: 301-402-0765

Building 10, Room 9S209

E-mail: bbarham@...

Just a quick note:

is NOT scheduling for Dr. Kastner's patients any longer.

She is still scheduling for Dr. GoldBach-Mansky.

So as of now... Beverly has taken BACK the pediatric patients which Kastner

takes care of and she will schedule the new Periodic Fever Patients who wish to

join the research study.

This MAY change.... but for now I wanted to repost her info so you can email her

or call.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

> Hi Fran

Thanks for the info. I try to keep myself as updated as possible so I don't

bother the wrong person. I was told to check in again in a few weeks about my

daughters status on the " list " . Thank you again!!!!

Lori

Mom to (2) ?PFS

> From: " Fran Bulone " <fbulone@...>

> Date: 2006/08/12 Sat PM 07:57:35 EDT

> < >

> Subject: NIH Contact RN for Dr. Kastner is Beverly again

>

> Beverly Barham, R.N., B.S.N.

>

>

> Nurse Specialist (Research)

> Office of the Clinical Director

>

> Phone: 301-594-2494; 888-996-4267

> Fax: 301-402-0765

> Building 10, Room 9S209

> E-mail: bbarham@...

>

> Just a quick note:

>

> is NOT scheduling for Dr. Kastner's patients any longer.

> She is still scheduling for Dr. GoldBach-Mansky.

>

> So as of now... Beverly has taken BACK the pediatric patients which Kastner

takes care of and she will schedule the new Periodic Fever Patients who wish to

join the research study.

>

> This MAY change.... but for now I wanted to repost her info so you can email

her or call.

>

> God Bless

> Fran

> Fran Bulone RN

> Mom to ph 7yr

> Waxhaw NC

> /

>

>

>

>

>

>

[Guest guest]

I hope that people whose information went to don't get lost in

this shuffle. I sent in my application in March and we're still

waiting to hear anything. I hate to bother people, but maybe I should

check on our status again.

-

[Guest guest]

,

Wait a week or so and send a note to Beverly.

She is on vacation until the 27th so I would wait until a few days after she

returns...

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Hi. My name is Linette. My daughter's name is Elaina. She is just under

21/2 and has a twin brother and an older sister. She also has , or so

we have been told.

Right now we are pretty scared and trying to get over the shock. We just

saw the infectious disease doctor, at CHOP two days ago. She started with

high fevers, reaching as high as 105.6, and no other symptoms, about 4

months ago. The fevers come almost exactly 27 -30 days apart each month,

and aside from the high fevers you would never know that she is sick. She

eats, plays, and laughs. She just can't shake the temperature. When the

fever is down, she acts as if noting is wrong. When it comes back up she

gets quiet. Today is day 4 of her most recent episode. Sometimes her legs

shake and it seems like her stomach hurts, but my husband and I don't know

if that is because her fever is high, or if her stomach hurts. She doesn't

cry she just twitches for about 15 minutes.

Last month, she had what appeared to be a throat infection, it turned out to

be just another symptom of . She also gets scattered hives during the

episodes. They don't seem to hurt her, but they sure do affect me. I sure

hope the doctors are right. They have told me not to worry because

everything will be okay. I should expect this to last for about 3 years and

it will disappear. That is not what I have read from others.

I have never talked to anyone on the computer, but I feel like all I want to

do is cry. So, I thought I would give this a try. I know that my daughter

is lucky compared to others, and for that I am thankful. I just hope it

doesn't get worse for her. I live in fear of that every minute.

I look forward to reading what others have to say, and wish strength to

everyone who needs it.

Thank you

[Guest guest]

Linette,

I noticed that you to your daughter to CHOP so I'm assuming you live in

the Delaware Valley. I live in Philadelphia, so I particularly wanted to

welcome you. Did the ID doc recommend any testing for the genetic periodic

fevers?

Coming to this message board has really been a wonderful experience for

me. The search for answers is certainly a roller coaster ride. I don't

think any two families experience with this syndrome has been the same,

but it sure has been helpful to have others that can relate to what we've

been through.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

<srolle@...>

Sent by:

08/13/2006 12:02 PM

Please respond to

< >

cc:

Subject: Re: NIH Contact RN for Dr. Kastner is Beverly

again

Hi. My name is Linette. My daughter's name is Elaina. She is just under

21/2 and has a twin brother and an older sister. She also has , or so

we have been told.

Right now we are pretty scared and trying to get over the shock. We just

saw the infectious disease doctor, at CHOP two days ago. She started with

high fevers, reaching as high as 105.6, and no other symptoms, about 4

months ago. The fevers come almost exactly 27 -30 days apart each month,

and aside from the high fevers you would never know that she is sick. She

eats, plays, and laughs. She just can't shake the temperature. When the

fever is down, she acts as if noting is wrong. When it comes back up she

gets quiet. Today is day 4 of her most recent episode. Sometimes her legs

shake and it seems like her stomach hurts, but my husband and I don't know

if that is because her fever is high, or if her stomach hurts. She doesn't

cry she just twitches for about 15 minutes.

Last month, she had what appeared to be a throat infection, it turned out

to

be just another symptom of . She also gets scattered hives during the

episodes. They don't seem to hurt her, but they sure do affect me. I sure

hope the doctors are right. They have told me not to worry because

everything will be okay. I should expect this to last for about 3 years

and

it will disappear. That is not what I have read from others.

I have never talked to anyone on the computer, but I feel like all I want

to

do is cry. So, I thought I would give this a try. I know that my daughter

is lucky compared to others, and for that I am thankful. I just hope it

doesn't get worse for her. I live in fear of that every minute.

I look forward to reading what others have to say, and wish strength to

everyone who needs it.

Thank you

[Guest guest]

Hey Linette,

It does seem very scary because you don't have answers.

My son is 7 1/2 and over the past 5 years we've seen Oncologist (cancer),

Neurologists, Infectious Disease Spec., Rheumatologists, and had several

ex-rays, sonograms, EKG's, MRI's and about 100 blood draws. Tho I REALLY want

an answer I am pretty confident that he does not have a fatal condition and the

people on this site have eased my fear and at the same time made me even more

persistent to keep fighting to find answers. This site may not tell you what's

going on with your daughter, but keep reading and you'll find you're not alone

and there are people who can help. I hope this makes you feel better.

Re: NIH Contact RN for Dr. Kastner is Beverly again

Hi. My name is Linette. My daughter's name is Elaina. She is just under

21/2 and has a twin brother and an older sister. She also has , or so

we have been told.

Right now we are pretty scared and trying to get over the shock. We just

saw the infectious disease doctor, at CHOP two days ago. She started with

high fevers, reaching as high as 105.6, and no other symptoms, about 4

months ago. The fevers come almost exactly 27 -30 days apart each month,

and aside from the high fevers you would never know that she is sick. She

eats, plays, and laughs. She just can't shake the temperature. When the

fever is down, she acts as if noting is wrong. When it comes back up she

gets quiet. Today is day 4 of her most recent episode. Sometimes her legs

shake and it seems like her stomach hurts, but my husband and I don't know

if that is because her fever is high, or if her stomach hurts. She doesn't

cry she just twitches for about 15 minutes.

Last month, she had what appeared to be a throat infection, it turned out to

be just another symptom of . She also gets scattered hives during the

episodes. They don't seem to hurt her, but they sure do affect me. I sure

hope the doctors are right. They have told me not to worry because

everything will be okay. I should expect this to last for about 3 years and

it will disappear. That is not what I have read from others.

I have never talked to anyone on the computer, but I feel like all I want to

do is cry. So, I thought I would give this a try. I know that my daughter

is lucky compared to others, and for that I am thankful. I just hope it

doesn't get worse for her. I live in fear of that every minute.

I look forward to reading what others have to say, and wish strength to

everyone who needs it.

Thank you

[Guest guest]

Hi,

I have all the information and lab work to send to NIH. Does the Dr.'s office

have to fax it all over or can I send my own childs information to Beverly at

NIH? Does anyone have information about sending in medical information to NIH?

Kim-Mom of

Devin and twins-3 1/2

Fran Bulone <fbulone@...> wrote:

Beverly Barham, R.N., B.S.N.

Nurse Specialist (Research)

Office of the Clinical Director

Phone: 301-594-2494; 888-996-4267

Fax: 301-402-0765

Building 10, Room 9S209

E-mail: bbarham@...

Just a quick note:

is NOT scheduling for Dr. Kastner's patients any longer.

She is still scheduling for Dr. GoldBach-Mansky.

So as of now... Beverly has taken BACK the pediatric patients which Kastner

takes care of and she will schedule the new Periodic Fever Patients who wish to

join the research study.

This MAY change.... but for now I wanted to repost her info so you can email her

or call.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

You can send it... The info is in the FILE section but I will send it here...

Beverly Barham, R.N., B.S.N.

Nurse Specialist (Research)

Office of the Clinical Director

Phone: 301-594-2494; 888-996-4267

Fax: 301-402-0765

Building 10, Room 9S209

E-mail: bbarham@...

[Guest guest]

-Was this information for me(Kim) on sending the medical records to

NIH? Just wanted to check because it was not addressed to anyone.

KIm- mom of twins

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

>

> You can send it... The info is in the FILE section but I will send

it here...

>

>

> Beverly Barham, R.N., B.S.N.

>

>

> Nurse Specialist (Research)

> Office of the Clinical Director

>

> Phone: 301-594-2494; 888-996-4267

> Fax: 301-402-0765

> Building 10, Room 9S209

> E-mail: bbarham@...

>

>

>

>

[Guest guest]

Yes Kim for you and anyone else who needs it.... Letting everyone know this info

and lots of other info is in the file section at the site too!!

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Hi .

Double checking can't hurt!!! Things did get a little

confusing, but the NIH is wonderful and they will get

you in when they can! You will be in good hands!

Best of luck.

Love,

Lori

--- Klooster <andreaklooster@...> wrote:

> I hope that people whose information went to

> don't get lost in

> this shuffle. I sent in my application in March and

> we're still

> waiting to hear anything. I hate to bother people,

> but maybe I should

> check on our status again.

>

> -

>

__________________________________________________

[Guest guest]

Hi Linette.

What a beautiful post.

Best of luck to you and your family!

Love and prayers,

Lori

--- srolle@... wrote:

> Hi. My name is Linette. My daughter's name is

> Elaina. She is just under

> 21/2 and has a twin brother and an older sister.

> She also has , or so

> we have been told.

>

> Right now we are pretty scared and trying to get

> over the shock. We just

> saw the infectious disease doctor, at CHOP two days

> ago. She started with

> high fevers, reaching as high as 105.6, and no other

> symptoms, about 4

> months ago. The fevers come almost exactly 27 -30

> days apart each month,

> and aside from the high fevers you would never know

> that she is sick. She

> eats, plays, and laughs. She just can't shake the

> temperature. When the

> fever is down, she acts as if noting is wrong. When

> it comes back up she

> gets quiet. Today is day 4 of her most recent

> episode. Sometimes her legs

> shake and it seems like her stomach hurts, but my

> husband and I don't know

> if that is because her fever is high, or if her

> stomach hurts. She doesn't

> cry she just twitches for about 15 minutes.

>

> Last month, she had what appeared to be a throat

> infection, it turned out to

> be just another symptom of . She also gets

> scattered hives during the

> episodes. They don't seem to hurt her, but they

> sure do affect me. I sure

> hope the doctors are right. They have told me not

> to worry because

> everything will be okay. I should expect this to

> last for about 3 years and

> it will disappear. That is not what I have read

> from others.

>

> I have never talked to anyone on the computer, but I

> feel like all I want to

> do is cry. So, I thought I would give this a try.

> I know that my daughter

> is lucky compared to others, and for that I am

> thankful. I just hope it

> doesn't get worse for her. I live in fear of that

> every minute.

>

> I look forward to reading what others have to say,

> and wish strength to

> everyone who needs it.

>

>

>

> Thank you

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________