NIH

[Guest guest]

Must be nice we have never been in and out of there in 1 day. Always

2-3 days.

I just hope this time they have more answers. We always see Kasnter as they

have no clue now what Kiara has

We are going this time for bone density testing, endocrinology and I don't

know who else lol

mom to Kiara unknown.. said to not have for sure

Re: NIH

,

Our first (and second) appointments at the NIH began around 10 a.m.

Only the first you have to " check in " at admissions at 7 or 7:30 and

that took under 1/2 for us. Also, when you " check in " at that early

hour, you can go alone and leave your children and husband at the

Inn sleeping. You will have plenty of time to go back to the Inn

and get them before the appointment at 9 or 10, whatever your time

is.

Both times, we were walking out of the Hospital by noonish, maybe

12:30 at the latest. So in short, we were able to catch at

2:30/3:00 flight home.

Good luck. in Tampa. Mom to Jonah, 5 (TRAPS)

> > >

> > > We got our call from Beverly today, and will be going to NIH

> > December 4.

> > > Anyone else going to be there then?

> > >

> > > It sounds like the wait time depends on the doctor you see. I

> > can't remember

> > > the name she gave me (I was out and she called on my cell

phone,

> > and I had

> > > no way to write it down. I think it sounded like an Indian name

> > perhaps.) I

> > > asked if we would see Dr. Kastner at all, and she said no, and

> > that it would

> > > be another eight month wait at least if we wanted to see him.

He

> > had

> > > reviewed 's chart and assigned him to this other doctor

who

> > is working

> > > with the part of the study. So maybe kids with different

> > symptoms get

> > > assigned to different doctors who have different length

backlogs?

> > We

> > > submitted paperwork in March, so it will be nine months for us

from

> > > application to appointment.

> > >

> > > We will also have our six-year-old with us. Does the Children's

> > Inn provide

> > > any activities for siblings during the appointment, or will he

> > need to be

> > > with us the whole time? I'd be interested in hearing how you

> > managed from

> > > anyone else who has been through this with another child along

> > (off list, if

> > > you don't think the whole group would be interested, or feel

free

> > to send it

> > > to the list if you want).

> > >

> > > We are also working with Angel Flight to get there, so I would

> > also be

> > > interested in hearing from anyone who has had that experience.

> > We're coming

> > > from Michigan. I'm a little nervous about flying out of

Michigan

> > on a tiny

> > > plane in December of all months (oh, well, probably better than

> > February!)

> > >

> > > Anyway, it was really exciting to finally get the call!

> > >

> > > -

> > >

> > >

> > >

[Guest guest]

Wow, I never heard of them not asking for the parent to contact the Research

Nurse in 6 months or a year!!

Especially with siblings. It is unusual for Dr. Kastner or the other members of

the team to label as especially with two kids in the same family. They

usually say it is most likely an unidentified mutation causing the fevers and

that maybe in time they will identify it... They commonly call it Periodic Fever

Syndrome of unknown origin or etiology.

The fever team most often will ask for you to come back in a year... (sometimes

6 months) simply to run immunoglobulins and a few other tests.... and to see how

the child (ren) are doing.... if new symptoms occur, fever patterns change

etc...

They do not contact you though... they usually tell the parent to contact them

is x amount of months and you would contact Beverly and she would set up the

appointment for a follow-up. The follow-up is usually a few hours... eval and

labs... If new genetic studies become available they will usually ask to run

them.

Hope this helps,

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

I have to admit that I was kind if shocked at that response too! Especially with

2 kids. It instantly brought Nicki to mind, wondering if she was the one that

gave that reply...

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

Access over 1 million songs - Music Unlimited Try it today.

[Guest guest]

Sacora,

doesn't have an official appointment yet, but Beverly " penciled " us

in for April 24th.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(9), and Kate(4)

Philadelphia, PA

" Sacora " <sacoracasselman@...>

Sent by:

01/24/2007 06:31 PM

Please respond to

To

cc

Subject

NIH

Is anyone going to the NIH in April? What dates if anyone is?

Sacora mom of nicolas 13

[Guest guest]

Yes it is the same study..

Go to the files and links there is ALL the info regarding the study and the

director Dr. Dan Kastner.

God Bless

Fran

PS Contact info is in the file section too.

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06

Waxhaw NC

/

[Guest guest]

HI ,

So when you go why do they have you stay so long? They

are having the doctors in our local area take care of

some of the test they want done and biopsy of the

lymph nodes. Any ways good luck

take care

--- proudmom@... wrote:

> Kiara and I are at the inn this week til thursday...

> anyone elsE????

>

>

>

>

__________________________________________________

[Guest guest]

We always take a day of rest when we first get here. Then we see docs all day

tomorrow and possible wed.. then we leave mid day thursday..

Always time for shopping and museums

Quoting Sacora Casselman <sacoracasselman@...>:

> HI ,

> So when you go why do they have you stay so long? They

> are having the doctors in our local area take care of

> some of the test they want done and biopsy of the

> lymph nodes. Any ways good luck

> take care

> --- proudmom@... wrote:

>

> > Kiara and I are at the inn this week til thursday...

> > anyone elsE????

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Sacora,

What happened at

NIH???????????????????????????????????????????????????????????????

I left a post on your carepage!

Re: NIH

HI ,

So when you go why do they have you stay so long? They

are having the doctors in our local area take care of

some of the test they want done and biopsy of the

lymph nodes. Any ways good luck

take care

--- proudmom@... wrote:

> Kiara and I are at the inn this week til thursday...

> anyone elsE????

>

>

>

>

__________________________________________________

[Guest guest]

hey tracy

you have a carepage?

Quoting <gt4990@...>:

> Sacora,

>

> What happened at

> NIH???????????????????????????????????????????????????????????????

> I left a post on your carepage!

>

> Re: NIH

>

>

> HI ,

> So when you go why do they have you stay so long? They

> are having the doctors in our local area take care of

> some of the test they want done and biopsy of the

> lymph nodes. Any ways good luck

> take care

> --- proudmom@... wrote:

>

> > Kiara and I are at the inn this week til thursday...

> > anyone elsE????

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

no...but i check yours!!!LOL

Re: NIH

>

>

> HI ,

> So when you go why do they have you stay so long? They

> are having the doctors in our local area take care of

> some of the test they want done and biopsy of the

> lymph nodes. Any ways good luck

> take care

> --- proudmom@... wrote:

>

> > Kiara and I are at the inn this week til thursday...

> > anyone elsE????

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Sacora,

I believe you can also call the inn and they have schedules of the

vans that go back and forth to the airports. I've heard other

parents mention it at the inn. We've always driven though, so I've

never done it personally.

Good luck,

[Guest guest]

Thank you Fran and

I did ask about the vans and the Inn said they did not have any vans that came

back and forth besides the shuttle buses. But thank you so much

Sacora

[Guest guest]

Thank you, I will check into that. Have you or anyone flown into the

Reagan Nation Airport?

[Guest guest]

We flew OUT of Reagan airport last spring and there was a

shuttle that took us easily from

the NIH to the airport. I got a lot of good info from the NIH's site;

here is a link for the shuttle

schedules. Sorry if that's not what you were asking about; I hadn't

followed the whole conversation.

http://dtts.ors.od.nih.gov/patient_shuttles.htm

, Seattle

[Guest guest]

Sorry, the shuttle bus is the " van " I was thinking of. Did they say

the shuttle buses go to the airport? I know I've talked to people

who have used them.

[Guest guest]

Hi ! What a small world! My son PJ is a patient of the NIH and we live in

Manassas, Va as well. Who is your son's pediatrician and who diagnosed him?

You can find the contact info in the files section of the group. I believe

that the waiting list is pretty long but you could start by contacting Beverly

Barham at the NIH.

Pat Bombardier, mom to PJ, 14 years old, Manassas, Va.

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

Never miss a thing. Make your homepage.

[Guest guest]

You can try to contact Plath at the NIH. That is who we saw 2 years ago.

Her phone # is 1-888-996-4267 ext. 3

hello there - I am new to this group. My son (age 5) has been

battling

fevers for about a year. Only recently he has been diagnosed with

. Reading thru all of your posts, it gives me some comfort to know

others feel the same frustrations as my wife and i do.

My first question (of many I am sure) is about NIH. I see in some other

messages that there is some sort of study going on at NIH. Does anyone

have any contact information for the study?

Thank You

Manassas, VA

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[Guest guest]

My son has also been referred to the NIH. I spoke to the nurse in

the deparment that handles periodic fever syndrome. She was very

nice and extremely helpful. The doctor that we would be seeing is

Dr. Kastner. Apparently they don't review the charts very frequently

due to how busy the doctor is, so dont be surprised if it takes a

couple of months to hear something back. The NIH faxed a

questionaire to my pediatrician office for me to fill out, and then

my pediatrician also wrote a summary to fax along with medical

documentation. The nurse mentioned that there is a children's inn

where family can stay for free that is set up by the NIH, along as

there is availability. There is a waiting list of over 100 children

and they will see you according the severity of your childs case. If

Dr Kastner is the doctor you would be seeing at the NIH I would give

you the number you need. My son has been tested through DNA for

every Periodic fever syndrome, and all have come back fine, except

for TRAPS Syndrome. There was a mutated gene found but not one

usually associated with TRAPS.It could be a gene that still hasn't

been seen, since the syndrome is rare. The nurse also said to feel

free to call anytime to see if the chart has been reviewed and/or if

he was placed on a list. GOOD luck.

[Guest guest]

Thank you and good luck to you too.

**************

Life should be easier. So

should your homepage. Try the NEW AOL.com.

(http://www.aol.com/?optin=new-dp & amp;

icid=aolcom40vanity & amp;ncid=emlcntaolcom00000002)

[Guest guest]

, thank you for all the information. Right now, I am going to put in on the

back burner until I rule out Lyme.

I honestly don't know how I'd travel to D.C. because I'm so weak. A short trip to Tulsa two weeks ago still

has me under.

Val

[Guest guest]

Any salt loads on the vacation?They can sneak in and in some will increase BP the next day.CE Grim MDOn Jul 15, 2009, at 1:02 PM, Valarie wrote: I've had a full work-up at University of Colorado Endocrinology, a full heart work-up at National Jewish. I've been to Mayo Clinic and I have an endo I haven't seen in over a year. I've gotten blank stares from all of them. The exception was National Jewish which was exceptionally thorough but had no answers. Since I've been back from my mini vacation, my BP is up 25 pts, even though I raised spiro 25 mg. I went through a similar experience in April and concluded my spiro might be bad. I don't think it was. I'm hoping it settles down soon. Urinary sodium at Mayo last summer was too low to measure. I'm not eating any differently. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bindner One step at a time. The first step is to look at the Endocrine trial and call them to request a study letter, which is taken to your endo. Don't worry about the later steps until your endo weighs in - and take Dr. Grim's advice about being wary of the Lyme route - your symptoms may be best treated by an endo, even if they have nothing to do with PA.

[Guest guest]

Actually, there is and I hadn't thought about it. At the picnic, in 104 degree weather, I

ate one slice of bread with a little barbequed pork on it, and a tad of side

dishes. I ate just a tiny bit of

several things. What else does one

eat at a picnic in Tulsa, OK?

That's when I got so faint in the heat and have had a hard time

recovering. How long should it take

to recover from a hit of salt like that?

Other times when we go out, I just eat a tiny bit of things and it has

not bothered me. 'course, I'm not

in the heat then. I've been taking

K pills the last two days and they seem to be helping. I'm back to peeing all night and not

sleeping.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Any salt loads on the vacation?

They

can sneak in and in some will increase BP the next day.

CE

Grim MD

On

Jul 15, 2009, at 1:02 PM, Valarie wrote:

Since I've been back from my mini

vacation, my BP is up 25 pts, even though I raised spiro 25 mg.