Re: Did the dr do a good job?

[Guest guest]

What does he mean to rare, look at all these kids? Is there no one in

Germany with this. I would seek a second option. but there is no test for

that is why it is done by process of elimination. Was he a specialist if so in

what kind? you have to speak for your son so stick in there good luck char

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

What does he mean to rare, look at all these kids? Is there no one in

Germany with this. I would seek a second option. but there is no test for

that is why it is done by process of elimination. Was he a specialist if so in

what kind? you have to speak for your son so stick in there good luck char

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

What does he mean to rare, look at all these kids? Is there no one in

Germany with this. I would seek a second option. but there is no test for

that is why it is done by process of elimination. Was he a specialist if so in

what kind? you have to speak for your son so stick in there good luck char

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi Karin,

My daughters doc ran numerous tests and most of them took some 30 days

to get the results. Do the tests to rule out anything else. It was

just blood work. From our last visit in December there is now 2 new

tests that they can do as well. Its kind of like an elimination

process. Hope this helps... Marice, and 13

[Guest guest]

Hi Karin,

My daughters doc ran numerous tests and most of them took some 30 days

to get the results. Do the tests to rule out anything else. It was

just blood work. From our last visit in December there is now 2 new

tests that they can do as well. Its kind of like an elimination

process. Hope this helps... Marice, and 13

[Guest guest]

Hi Karin,

My daughters doc ran numerous tests and most of them took some 30 days

to get the results. Do the tests to rule out anything else. It was

just blood work. From our last visit in December there is now 2 new

tests that they can do as well. Its kind of like an elimination

process. Hope this helps... Marice, and 13

[Guest guest]

Hello- I am a registered nurse and a mom of a child with TRAPS who is followed

at the NIH, and have been a member of this group for quite a while as well. I

don't write in very often, but I do try to keep up with what's going on.

What a frustrating appointment. I believe that is more common than most

physicians think it is -- and while there are really no tests to make a

definitive diagnosis, the diagnosis can usually be made based on the child's

symptoms and history.

If you are not comfortable with this doctor or his recommendations, a second

opinion would be a very reasonable option. How about contacting the National

Institutes of Health? I imagine that it has taken quite a while to get this far,

and if this doctor really wants to wait and see more of what's happening, going

forward with genetic testing while you're waiting / figuring this out seems also

to be a good idea. What's the downside? If it is , the genetic tests

should show no abnormality, and if there is a genetic cause to your child's

symptoms, at least you will know what you're dealing with.

Regards,

Kathy

(The " A " in " T & A " stands for adenoid / adenoidectomy).

[Guest guest]

Hi Karin,

My experience is that doctors can vary radically; if you left feeling

unheard or that the doctor isn't really digging for answers for your

child, I would find someone else.

How long has Lukas been fevering? At five, I am assuming that you

have " waited to see what happened " already, and that is why you went

to a specialist!

Just for comparison, when we first saw a specialist (rhumatologist)

for our daughter, she:

gave her a very thorough physical evalutation (seriously, it took

some 15-20 minutes), looking for any signs of arthritis

listened to Lily's history of fevers and all symptoms, and took us

seriously

had read through her previous medical records from the pediatrician

and was familiar w/her case

ordered bloodwork that day to rule out all sorts of stuff, some I had

heard of, some not,

as well as the six-week long testing ruling out cyclic neutropenia

discussed genetic testing (this was four years ago), which we waited

on b/c of $$--we eventually got it done through NIH

ordered a chest x-ray (can't remember what that ruled out)

we left w/clear instructions on returning for more bloodwork and

physical eval. during a flare, as well as the option

to try prednisone, and literature on the different pfs' then known about

It is important to rule out the genetic pfs b/c not everything is as

relatively " benign " (as one doctor chirpily told me) as .

d Timblin

mdefaye@...

[Guest guest]

Hi Karin,

My experience is that doctors can vary radically; if you left feeling

unheard or that the doctor isn't really digging for answers for your

child, I would find someone else.

How long has Lukas been fevering? At five, I am assuming that you

have " waited to see what happened " already, and that is why you went

to a specialist!

Just for comparison, when we first saw a specialist (rhumatologist)

for our daughter, she:

gave her a very thorough physical evalutation (seriously, it took

some 15-20 minutes), looking for any signs of arthritis

listened to Lily's history of fevers and all symptoms, and took us

seriously

had read through her previous medical records from the pediatrician

and was familiar w/her case

ordered bloodwork that day to rule out all sorts of stuff, some I had

heard of, some not,

as well as the six-week long testing ruling out cyclic neutropenia

discussed genetic testing (this was four years ago), which we waited

on b/c of $$--we eventually got it done through NIH

ordered a chest x-ray (can't remember what that ruled out)

we left w/clear instructions on returning for more bloodwork and

physical eval. during a flare, as well as the option

to try prednisone, and literature on the different pfs' then known about

It is important to rule out the genetic pfs b/c not everything is as

relatively " benign " (as one doctor chirpily told me) as .

d Timblin

mdefaye@...

[Guest guest]

Hi Karin,

My experience is that doctors can vary radically; if you left feeling

unheard or that the doctor isn't really digging for answers for your

child, I would find someone else.

How long has Lukas been fevering? At five, I am assuming that you

have " waited to see what happened " already, and that is why you went

to a specialist!

Just for comparison, when we first saw a specialist (rhumatologist)

for our daughter, she:

gave her a very thorough physical evalutation (seriously, it took

some 15-20 minutes), looking for any signs of arthritis

listened to Lily's history of fevers and all symptoms, and took us

seriously

had read through her previous medical records from the pediatrician

and was familiar w/her case

ordered bloodwork that day to rule out all sorts of stuff, some I had

heard of, some not,

as well as the six-week long testing ruling out cyclic neutropenia

discussed genetic testing (this was four years ago), which we waited

on b/c of $$--we eventually got it done through NIH

ordered a chest x-ray (can't remember what that ruled out)

we left w/clear instructions on returning for more bloodwork and

physical eval. during a flare, as well as the option

to try prednisone, and literature on the different pfs' then known about

It is important to rule out the genetic pfs b/c not everything is as

relatively " benign " (as one doctor chirpily told me) as .

d Timblin

mdefaye@...