what is nih?

[Guest guest]

Not sure if this came through it was for Nan and others who have not found

the info at our site.

_____

From: Fran Bulone [mailto:FBULONE@...]

Sent: Saturday, January 21, 2006 1:19 PM

' '

Subject: RE: what is NIH?

Hi,

When each new member joins I send a welcome note... in that welcome note I

welcome you... describe the group and members and I give you a summary of my

son's illness from infancy until today.

I also include the information and mention NIH, the National Institute for

Health run by our government in Bethesda MD for research. It is a HUGE

facility where research studies are initiated and funded through the US.

I like to inform parents and other family members of the studies currently

going on for Periodic Fevers.

Dr. Kastner is the Director of the Fever Studies and the Specific

Genetic Studies going on currently.

Plass is the RN who works with Kastner since the fall.

Beverly Barnham is the RN who use to work with us however since the studies

are getting bigger with more participants they split adults and children.

has pediatrics and Bev has adults.

The information is ALL in the file section and there are links in the link

section.... There are names and telephone numbers too.

Too expedite looking in the file section and link section check below and

you will see the Studies we are discussing.

The website for NIH is.... www.nih.gov

There is a wealth of info there.

The link for the portion of NIH where we belong is:

http://www.niams.nih.gov/

<http://www.niams>

Periodic Fever Syndromes

<http://clinicalstudies.info.nih.gov/cgi/processqry3.pl?sort=1 & search=niams &

searchtype=0 & patient_type=All & protocoltype=All & institute=%25 & conditions=All>

05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with

Autoinflammatory Disease: A Therapeutic Approach to Study Pathogenesis. This

study will examine the safety and effectiveness of interleukin-1 (IL-1) Trap

for treating patients with autoinflammatory diseases-conditions with intense

episodes of inflammation, such as fever, rash, or joint swelling. IL-1 Trap

blocks a substance called IL-1 that may be important in causing the

inflammation in these diseases.

<http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_94-AR-0105.htm

l@familial@mediterranean> 94-AR-0105: Genetics and Pathophysiology of

Familial Mediterranean Fever and Related Disorders. This study admits

patients with familial Mediterranean fever and other episodic inflammatory

syndromes. The goal is to identify subsets of patients to define distinct

genetic diseases and their clinical manifestations.

Neonatal Onset Multisystem Inflammatory Disease (NOMID)

<http://clinicalstudies.info.nih.gov/cgi/processqry3.pl?sort=1 & search=niams &

searchtype=0 & patient_type=All & protocoltype=All & institute=%25 & conditions=All>

05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with

Auto inflammatory Disease: A Therapeutic Approach to Study Pathogenesis.

This study will examine the safety and effectiveness of interleukin-1 (IL-1)

Trap for treating patients with auto inflammatory diseases-conditions with

intense episodes of inflammation, such as fever, rash, or joint swelling.

IL-1 Trap blocks a substance called IL-1 that may be important in causing

the inflammation in these diseases.

<http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR-0298.html>

03-AR-0298: A Pilot Study with the IL-1 Receptor Antagonist Anakinra/Kineret

in Patients with Neonatal Onset Multisystem Inflammatory Disease

(NOMID/CINCA Syndrome). This is a multi-center pilot study using the IL-1

receptor antagonist anakinra to treat children with Neonatal Onset

Multisystem Inflammatory Disease (NOMID), also known as chronic infantile

neurological, cutaneous and arthopathy (CINCA) syndrome.

<http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR-0173.html>

03-AR-0173: Studies of the Pathogenesis and Natural History of Neonatal

Onset Multisystem Inflammatory Disease (NOMID). This study will examine and

test patients with neonatal onset multi-system inflammatory disease (NOMID)

to learn more about the cause and course of the disease. It will study the

disease signs and symptoms and the possible role of a gene called CIAS1, and

it will develop a database to gather information on patients with NOMID in

the United States and around the world. It will also serve as a screening

protocol to offer eligible patients participation in a treatment protocol,

if an appropriate one is available.

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Rose & all,

This is a site that Fran posted a short time ago. My husband

actually found it last year and we've used it frequently. The

language & format is very easy to understand. It basically goes

through questions that people typically ask and give answers for

each of the fever disorders.

http://www.printo.it/pediatric-rheumatology/information/UK/13.htm

There is a link to the pdf version at the top of the artical. My

husband and I both have it saved so we can print it when we need

to.

As I said, we've used this frequently over the last year. We've

given it to friends parents, our nanny and other sitters, our

parents and family members, 's speach therapist, and so on...

Ever since we started using this artical, we've received less

questions and less resistance....well except for my mother in law -

but she is a topic in herself!

I think that when we are dealing with something everyday and do

sooooo much research it is hard to explain it to others so that they

can truly understand. When you are dealing with something so rare

and with so many unknowns, people's first reaction is to doubt and

ask questions. I found that a brief explaination and then asking

someone to read the HIDS section (since that is the closest to my

children) helps a lot. Then, if they have questions they can ask

and we can talk about it. There usually are not any questions, just

understanding.

I hope it helps others as well....

[Guest guest]

I am new to . Last week the physician suggested this for my son.

He gets very frequent, very high fevers for up to 8 days at a time. He

doesn't get mouth soars. They did see lymph nodes but his only other

symptom is extreme headaches. He often says " I can't take it anymore "

He's only 4 and has been doing this for 2 years. When he was 2 we took

him to the eye dr. Can anyone fill me in on all the acronyms and

different things I should know.

Thanks,

New to the club,

Houston, Texas

4 1/2