Plass

[Guest guest]

Please... with all of the complaints I am getting.... send a formal letter

to Dr Kastner and Beverly. I will again list their emails.

They NEED to know the problems WE are ALL having with Plass. This is

a problem. Some of our children have a diagnosis and need to be placed on

special medications and followed closely while others are STILL searching

for answers.

I have worked CLOSELY with Janet the original research nurse... and

then Beverly and now . Even when Bev was BRAND new she learned and

took on the responsibility needed in the position she held. She asserted

herself. I have NOT met however I too have significant problems with

her.

I agree sometimes the Nurses may need 24-48 hours to research an answer...

however the weeks that go by with NO response is simply NOT acceptable. A

new patient who is trying to get information regarding the study should have

a call back within 24 hours... Same with an email. Even if someone is busy

a courtesy call is appropriate and a telephonic consultation should be set

up for a later date.

Uggh.... My little boy is fevering often... his episodes last longer and

longer... and his joints are so so sore. He gets more and more symptoms with

this disorder.... and Kastner seemed so concerned and told me he wanted

ph up at NIH as soon as could get us in. He explained in November

that we would need to be there for 4-5 days and he SPECIFIED the testing

that needed to be done which included placing him under anesthesia for a

total body MRI. Funny thing is knew NOTHING about this. Although I

did write an email late in November after finding ALL of this information

(shocking news to me) and asked her to let me know early so I could plan

care for my elderly disabled Mother who lives with us.... as well as set up

someone to walk our two Standard Poodles throughout the day. I listed the

tests Kastner told me we would need to get as baseline studies.

So I do NOT know How she stated she was " unaware " of this. She even stated

she did not know ph was already a patient in a research study at the

NIH!

Unreal! These are NOT a " being new " problem. I was a manager of a large

trauma Operating Room and if I had a staff RN who responded to our patients

like this.... and I KNEW of the problems... she would be gone from my unit.

I am upset!! <smile>

If we do not send formal diplomatic yet assertive letters to these people

nothing will be done.

_L_Kastner@... or <mailto:kastnerd@...>

kastnerd@...

BBarham@...

mancusoj@... Joan Mancuso