Re: We just got an appt at NIH with Dr Chitkara

[Guest guest]

Deanna,

Jarrod saw Dr. Chitkara for his visit in March. She was VERY nice and

always answers any questions we have faster than our pediatrician :-) She

is very knowledgeable and compassionate (I think she has a young child

herself if I am remembering correctly). She is very interested in

which was exciting to me for a doctor to be so willing to listen. Hope

this helps :-)

(SWFL)

Mother of Jarrod (4)

[Guest guest]

Dr CHitkara is a doctor studying

Kiara does not have for sure but Dr Chitkara is still following her and

will answer emails quite fast.

SHe is very compassionate and is definitely willing to listen

Hope you have success

mom to Kiara

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[Guest guest]

I've never heard of that doctor but it must be rotation time at NIH. The docs

that we see at NIH are 'fellows' working towards pure research. For their first

year rotation, they see mostly patients then for the second year rotation, they

split their time between seeing patients and lab research and then after that

they move on to pure research.

I know that most people here don't remember Janet but she used to be

really good at trying to schedule your first appointment with a fellow just

starting a rotation, that way you would get to see the same one at least a

couple of times, before they moved on. I think now it's pretty much luck of the

draw!

It may be different though, if a doctor (one of the fellows) wants to

primarily see patients. I remember one we saw a couple of years who couldn't

wait to get past the part where she had to see patients. She just wanted to do

research without people!

Pat

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[Guest guest]

I agree Pat

Dr CHitkara is studying so from what I was told she will be there for

longer.

We saw one the first time we were there and now he is moved on..

grrrr

Re: We just got an appt at NIH with Dr Chitkara

I've never heard of that doctor but it must be rotation time at NIH. The docs

that we see at NIH are 'fellows' working towards pure research. For their first

year rotation, they see mostly patients then for the second year rotation, they

split their time between seeing patients and lab research and then after that

they move on to pure research.

I know that most people here don't remember Janet but she used to be

really good at trying to schedule your first appointment with a fellow just

starting a rotation, that way you would get to see the same one at least a

couple of times, before they moved on. I think now it's pretty much luck of the

draw!

It may be different though, if a doctor (one of the fellows) wants to

primarily see patients. I remember one we saw a couple of years who couldn't

wait to get past the part where she had to see patients. She just wanted to do

research without people!

Pat

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

So do you actually get to see Dr. Kastner at all, or are you only seen by a

fellow?

I would also appreciate any insight into what the first visit to NIH is

like--appointments, testing, etc. We are expecting to go in the next few

months and I would like to prepare for what to expect. Thanks.

-

[Guest guest]

, I think that visits vary quite a bit for people. Some have appointments

spread out over days but when we go every 6 months at least, we go in and out

the same day.

For our first visit, it went as follows:

Sign in at downstairs reception and they either take you or send you up.

A nurse will take vitals and a history, brief or long, as necessary. She puts

you in a room and then,

You meet with whichever fellow you've made appt. with. He or she examines and

goes over history again. They leave room and return with

the whole team of whatever other fellows and specialists are available at the

time. Initially we were seen by probably 6 people at that team visit, including

Dr. Kastner. You have to tell history again! Each doc will ask questions as they

pertain to their specialty. One doc was examining joints and asking about joint

pain while another was examining belly asking about belly issues while another

looks in eyes while another reads back history while another takes notes!

Needless to say, keep your cool, the experience can be a little overwhelming

the first time but you sit there thinking, my gosh, finally! People who

understand!

Then Dr. Kastner tells you a plan of action, whether he's sending you to the

lab for genetic tests if he suspects the need or discusses options. He'll let

you know whether or not you need to return and when, etc.

We go through pretty much the same thing every visit except that sometimes

instead of a whole bunch of people, it's just Dr. Kastner and the fellow we

started that appointment with. In the almost 5 years that we've been going, I

think we have seen Dr. Kastner every time but one. He always tells us to return

within at least 6 months or may specify a month or 6 weeks and they always take

their 8 tubes of blood plus every other visit or so, they want what they call a

" study sample " which PJ hates! It's 30cc of blood just sucked into a syringe,

that draw always makes him throw up.

Pat - I hope I covered it all, I'm sure others will share!

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

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[Guest guest]

Thank you for all the replies! I was just confused as all I've

heard was about Dr Kastner and the study. So when we were called

out of the blue by someone at the NIH to schedule an appt with this

doctor I'd never heard of, I wasn't sure what to expect. Thanks for

the whole run down and perhaps we can be bettter mentally

prepared. As for the blood draws, is there time to use the

numbing cream or would it be a waste to bring it?

Deanna

mom to Zachary,4yrs,

Kalla, 3yrs

Micah 1yr

>

> , I think that visits vary quite a bit for people. Some have

appointments spread out over days but when we go every 6 months at

least, we go in and out the same day.

>

> For our first visit, it went as follows:

> Sign in at downstairs reception and they either take you or

send you up.

>

> A nurse will take vitals and a history, brief or long, as

necessary. She puts you in a room and then,

>

> You meet with whichever fellow you've made appt. with. He or she

examines and goes over history again. They leave room and return with

>

> the whole team of whatever other fellows and specialists are

available at the time. Initially we were seen by probably 6 people

at that team visit, including Dr. Kastner. You have to tell history

again! Each doc will ask questions as they pertain to their

specialty. One doc was examining joints and asking about joint pain

while another was examining belly asking about belly issues while

another looks in eyes while another reads back history while another

takes notes!

>

> Needless to say, keep your cool, the experience can be a little

overwhelming the first time but you sit there thinking, my gosh,

finally! People who understand!

>

> Then Dr. Kastner tells you a plan of action, whether he's

sending you to the lab for genetic tests if he suspects the need or

discusses options. He'll let you know whether or not you need to

return and when, etc.

>

> We go through pretty much the same thing every visit except that

sometimes instead of a whole bunch of people, it's just Dr. Kastner

and the fellow we started that appointment with. In the almost 5

years that we've been going, I think we have seen Dr. Kastner every

time but one. He always tells us to return within at least 6 months

or may specify a month or 6 weeks and they always take their 8 tubes

of blood plus every other visit or so, they want what they call

a " study sample " which PJ hates! It's 30cc of blood just sucked into

a syringe, that draw always makes him throw up.

>

> Pat - I hope I covered it all, I'm sure others will share!

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

they will EMLA them there if you so request.

Re: We just got an appt at NIH with Dr Chitkara

Thank you for all the replies! I was just confused as all I've

heard was about Dr Kastner and the study. So when we were called

out of the blue by someone at the NIH to schedule an appt with this

doctor I'd never heard of, I wasn't sure what to expect. Thanks for

the whole run down and perhaps we can be bettter mentally

prepared. As for the blood draws, is there time to use the

numbing cream or would it be a waste to bring it?

Deanna

mom to Zachary,4yrs,

Kalla, 3yrs

Micah 1yr

>

> , I think that visits vary quite a bit for people. Some have

appointments spread out over days but when we go every 6 months at

least, we go in and out the same day.

>

> For our first visit, it went as follows:

> Sign in at downstairs reception and they either take you or

send you up.

>

> A nurse will take vitals and a history, brief or long, as

necessary. She puts you in a room and then,

>

> You meet with whichever fellow you've made appt. with. He or she

examines and goes over history again. They leave room and return with

>

> the whole team of whatever other fellows and specialists are

available at the time. Initially we were seen by probably 6 people

at that team visit, including Dr. Kastner. You have to tell history

again! Each doc will ask questions as they pertain to their

specialty. One doc was examining joints and asking about joint pain

while another was examining belly asking about belly issues while

another looks in eyes while another reads back history while another

takes notes!

>

> Needless to say, keep your cool, the experience can be a little

overwhelming the first time but you sit there thinking, my gosh,

finally! People who understand!

>

> Then Dr. Kastner tells you a plan of action, whether he's

sending you to the lab for genetic tests if he suspects the need or

discusses options. He'll let you know whether or not you need to

return and when, etc.

>

> We go through pretty much the same thing every visit except that

sometimes instead of a whole bunch of people, it's just Dr. Kastner

and the fellow we started that appointment with. In the almost 5

years that we've been going, I think we have seen Dr. Kastner every

time but one. He always tells us to return within at least 6 months

or may specify a month or 6 weeks and they always take their 8 tubes

of blood plus every other visit or so, they want what they call

a " study sample " which PJ hates! It's 30cc of blood just sucked into

a syringe, that draw always makes him throw up.

>

> Pat - I hope I covered it all, I'm sure others will share!

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

Okay, this is making me a little nervous. has done really well with

blood draws, thanks to emla and a terrific technician who made it fun with

stickers and balloons. We got through the cyclic neutropenia testing with

him only crying once, and he was sad when I told him we didn't need to go

back anymore. But how much blood can they take from a 30 pound kid at one

time? Is it the sight of the blood that makes PJ throw up, or is he actually

getting sick because they are taking so much blood at once?

-

On 9/16/06, Bombardier <petish44@...> wrote:

>

> they always take their 8 tubes of blood plus every other visit or so,

> they want what they call a " study sample " which PJ hates! It's 30cc of blood

> just sucked into a syringe, that draw always makes him throw up.

>

[Guest guest]

We get about 8 tubes taken from ph at the NIH.... He handles it really

well. They have never missed the stick and last time we were blessed because he

went under anesthesia by mask.... and then after he was asleep and tubed, they

started an IV ... took his blood from the site and sent it off to the lab.

We head up there tomorrow for the week and he is not going under anesthesia this

time so he will go to the lab!! Hopefully he will do well again.

They are regulated in how many cc's of blood a child can have taken... so

although 6-8 vials are taken it is usually within the normal allowed amount.

I always buy ph something very special after he has a major stick!!

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

, don't worry! Those techs are so good at what they do! They use a little

butterfly to get it all out of one stick. I think that it might be the sight of

all of that blood in the syringe that makes him sick but I'm not positive. It

must be also the sensation of that amount being drawn out.

Pat

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

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Hey Pat,

Yep hydration helps draw blood.

Keeps the veins fat and plump!

LOL

We will head out and begin our drive late today since we had company up from

Florida... Maybe around noon and arrive after dinner and before dark at the

Children's Inn... I hope!

Talk soon.

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

[Guest guest]

Hi , I don't want to scare you, but we had an appt in early Sept and

the lab technician didn't know which drawer the tiny 'butterfly' needles

were in, so he used a bigger one. The bigger needle blocked too much flow in

's little vein, so the blood stopped flowing and they had to switch to

the other arm. For the second prick the tech managed to find the

'butterfly' needles and everything went smoothly.

My point is: make sure they use the tiny 'butterfly' needles! With those

everything goes smoothly

By the way, Dr. Chitkara is very nice and she responds to my emails within a

few hours!

Patty Manning

( - 4.5 yrs - )

Re: We just got an appt at NIH with Dr Chitkara

, don't worry! Those techs are so good at what they do! They use a

little butterfly to get it all out of one stick. I think that it might be

the sight of all of that blood in the syringe that makes him sick but I'm

not positive. It must be also the sensation of that amount being drawn out.

Pat

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

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faster.