RE: Re: Nikki is no Beverly Carey... response

January 19, 2006

Carey,

My heart reaches out to you.

This should have all been decided prior to your stay. Nikki or who ever did

your initial intake should have asked the question regarding staph... I

remember our first stay, Bev asked if ph had any history of staph

infections as did the person from the Children's Inn who called to confirm

our stay.

That was missed by someone there.

Since there was a mishap, it would have been 's place to make sure

she followed you through with the problem and made sure you were comfortably

set up at a nearby hotel... So so sad.... she is a research nurse and she is

responsible to make sure she gets a good history from the parents.

Well enough said... I hope you get to the bottom of the fever disorder. Have

they mentioned running any other DNA studies for the rarer disorders such as

NOMID/Muckle Wells. You mention rash... and history of meningitis??

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

January 20, 2006

Im sorry you are having trouble. Nikki truely is a poor RN and it truely makes

me apprehensive about going down there. But they really struggle with diagnosis

for Kiara up here and it makes it so hard.

I dont know what to do .. but I know god is tellig me to get answers.

Ill keep praying for you

VAnessa Bisson

mom to kiara 5

Re: Nikki is no Beverly Carey... response

>Fran,

When we were there in November Dr Kastner was not there. So they did

not say anything about running more DNA tests. So far she has been

tested for HIDS and TRAPS. On our first visit in 2004 Dr. Kim had

commented on Muckle Wells because Hannah has a history of stomach

problems. When she was 5 weeks old we had to have a biopsy done.

The doctors at Vanderbilt thought she had Hirsprungs disease but the

test was negative. The DNA test to my knowledge has not been done

for Muckle Wells. She has never had meningitis. Last August she did

have a kidney stone. At the age of 3!!! I have an older brother who

shares common symptoms with Hannah and is in poor health now. Which

makes me want to figure Hannah's condition out even more because I do

not want her to suffer the things my brother is currently going

through. As far as the staph infections are concerned if Nikki had

read Hannah's chart she would have known this because when Hannah was

hospitilized for the infection the doctors here contacted NIH to see

if there was any connection between the staph infections and any of

the fever syndromes. I have faxed Nikki the lasted test results to

find out where we should stay when we fly in on February 13 but she

still hasn't contacted me. Thanks for listening to my frustration

even most family members don't quite understand how frustrating this

is.

Carey

Mom of Hannah

Liberty, TN

> Carey,

> My heart reaches out to you.

>

> This should have all been decided prior to your stay. Nikki or who

ever did

> your initial intake should have asked the question regarding

staph... I

> remember our first stay, Bev asked if ph had any history of

staph

> infections as did the person from the Children's Inn who called to

confirm

> our stay.

>

> That was missed by someone there.

>

> Since there was a mishap, it would have been 's place to

make sure

> she followed you through with the problem and made sure you were

comfortably

> set up at a nearby hotel... So so sad.... she is a research nurse

and she is

> responsible to make sure she gets a good history from the parents.

>

> Well enough said... I hope you get to the bottom of the fever

disorder. Have

> they mentioned running any other DNA studies for the rarer

disorders such as

> NOMID/Muckle Wells. You mention rash... and history of meningitis??

>

> God Bless

> Fran

> Fran A Bulone

> Mom to ph 6 yrs old

> Waxhaw, NC

> Owner & Moderator Group

>

January 20, 2006

Carey,

I am so sorry to hear what you had to deal with! UGH as if things are not hard

enough! I would also maybe contact the info desk at the Clinical building and

ask about local hotels. I can tell you that do remember seeing on a bulletin

board by the cafe that there is at least one hotel which offers either very low

rates or possibly free rooms(not sure). If the info desk is of no help call and

ask for a social worker in any dept!!! I bet a worker in oncology would be of

great assistance..I would tell them that u are just trying to get help and your

" clinic nurse' has not been to responsive. U wouldn't really need to disclose

whom that is or what clinic......just tell them u are looking for a hotel !

Or even call the Inn and speak to there social worker...not a volunteer !

Sometimes the volunteers don't always now!