Re: Sequence of events

[Guest guest]

That is a question I would like to hear the answer to too. Charish is

going to go to Vanderbilt Childrens Hospital on Thursday. We finally

got a doc to see that she doesnt have a virus and there is more going

on then what meets the eye. I have no clue what to expect and what to

prepare her for. With the heart doc I knew what to tell her and what

was going to happen now this and I am clueless. I dont even know the

name of her doc and that drives me crazy too. I would like to know

theseqyence of things too.

Becca

[Guest guest]

That is a question I would like to hear the answer to too. Charish is

going to go to Vanderbilt Childrens Hospital on Thursday. We finally

got a doc to see that she doesnt have a virus and there is more going

on then what meets the eye. I have no clue what to expect and what to

prepare her for. With the heart doc I knew what to tell her and what

was going to happen now this and I am clueless. I dont even know the

name of her doc and that drives me crazy too. I would like to know

theseqyence of things too.

Becca

[Guest guest]

That is a question I would like to hear the answer to too. Charish is

going to go to Vanderbilt Childrens Hospital on Thursday. We finally

got a doc to see that she doesnt have a virus and there is more going

on then what meets the eye. I have no clue what to expect and what to

prepare her for. With the heart doc I knew what to tell her and what

was going to happen now this and I am clueless. I dont even know the

name of her doc and that drives me crazy too. I would like to know

theseqyence of things too.

Becca

[Guest guest]

Hi ,

I don't think there's any standard sequence of events for diagnosing

as each Dr seems to follow a slightly different protocol

depending on their experiences and on your child. In our personal

experience, we:

*Documented many " viruses " with our ped, got blood work done, and

were then referred to an ID.

*ID -- We saw 2 IDs as I didn't care for the first. Between the two,

they ran all sorts of blood tests to rule out some obvious things. We

then returned during an episode, got another eval and more blood

tests. The first ID ran an abdominal sonogram to rule out

Neuroblastoma(haven't read this from other people so I'm not sure how

many do this). Lastly, we ran genetic tests for HIDS, TRAPS and FMF.

*Rheum -- The ID referred us to a rheum because my son walked very

stiffly during episodes. Wanted to rule out JRA. Visited the Rheum and

got a whole different set of labs done.

*Hematologist -- For the first time my son had flaky test results

with the rheum and we are now being referred to a hematologist because

of the results. We would not be visiting the hematologist had we not

experienced the flaky results.

*Somewhere in between all of this we visited an ENT experienced with

kids for a consult. He did not run any labs, rather just told us

the procedure and his success rate. We returned for an evaluation

during an episode. Still pending a f/u during my son's next episode.

I found that every Dr has a different set of labs that they want to

see. We saw 2 different IDs and each of them had a completely

different approach. We stuck with the one we liked/trusted and went

from there based on my son's test results and symptoms.

Hope this helps. Just our personal experience and I'm sure it can vary

drastically between children/Drs. I'm sure others will chime in too.

Best,

Vivian

[Guest guest]

's 'chain of events'

July 05' broke femur bone, next day HIGH unexplained fever.

October 05' another fever

December 05 another fever and then every month since then.

Feb 06 my wonderful Pedi referred us to Infectious Disease

Feb 06 ID ordered round of PFS testing from GENEX* gave naprosyn for episode

(did NOTHING)

Mar 06 all test NEGATIVE **diagnossis assumed as

Apr 06 tried prednisone, this STOPPED fever in its tracks hours after admin,

but fever came back quicker and w/ more severity. We tried this on/off for 8/9

months

Feb/Mar 07 Cemitidine went 49 days fever free (then back to monthly)

Aug 07 upped the dose of Cemitidine to 2tsp 2x a day

Dec 07 Stopped all Cemitidine, go back to prednisone for treatment and

schedule T & A

Apr 4th T & A...

My wonderful Pedi, took no chances since we had lost our first son, and sent

us to ID right away who HAPPENED to know about PFS. So we were very lucky.

Only once, when switching insurance did we run into a STUPID pedi, who kept

telling me..yeah I have heard of these PFS but this kid is just sick..did strep

test, did ebstein barr test....NEGATIVE..DUHHH...anyway, got another PEDI, who

listened to me, then got referred to Stanford...hence where we are today!

I would say every other time they test 's blood for the counts

etc....during an episode and during a HEATHLY time too. So..thats my

TIMELINE...hope it helps..just don't give up on your pedi! PUSH!

cINDY

[Guest guest]

's 'chain of events'

July 05' broke femur bone, next day HIGH unexplained fever.

October 05' another fever

December 05 another fever and then every month since then.

Feb 06 my wonderful Pedi referred us to Infectious Disease

Feb 06 ID ordered round of PFS testing from GENEX* gave naprosyn for episode

(did NOTHING)

Mar 06 all test NEGATIVE **diagnossis assumed as

Apr 06 tried prednisone, this STOPPED fever in its tracks hours after admin,

but fever came back quicker and w/ more severity. We tried this on/off for 8/9

months

Feb/Mar 07 Cemitidine went 49 days fever free (then back to monthly)

Aug 07 upped the dose of Cemitidine to 2tsp 2x a day

Dec 07 Stopped all Cemitidine, go back to prednisone for treatment and

schedule T & A

Apr 4th T & A...

My wonderful Pedi, took no chances since we had lost our first son, and sent

us to ID right away who HAPPENED to know about PFS. So we were very lucky.

Only once, when switching insurance did we run into a STUPID pedi, who kept

telling me..yeah I have heard of these PFS but this kid is just sick..did strep

test, did ebstein barr test....NEGATIVE..DUHHH...anyway, got another PEDI, who

listened to me, then got referred to Stanford...hence where we are today!

I would say every other time they test 's blood for the counts

etc....during an episode and during a HEATHLY time too. So..thats my

TIMELINE...hope it helps..just don't give up on your pedi! PUSH!

cINDY

[Guest guest]

's 'chain of events'

July 05' broke femur bone, next day HIGH unexplained fever.

October 05' another fever

December 05 another fever and then every month since then.

Feb 06 my wonderful Pedi referred us to Infectious Disease

Feb 06 ID ordered round of PFS testing from GENEX* gave naprosyn for episode

(did NOTHING)

Mar 06 all test NEGATIVE **diagnossis assumed as

Apr 06 tried prednisone, this STOPPED fever in its tracks hours after admin,

but fever came back quicker and w/ more severity. We tried this on/off for 8/9

months

Feb/Mar 07 Cemitidine went 49 days fever free (then back to monthly)

Aug 07 upped the dose of Cemitidine to 2tsp 2x a day

Dec 07 Stopped all Cemitidine, go back to prednisone for treatment and

schedule T & A

Apr 4th T & A...

My wonderful Pedi, took no chances since we had lost our first son, and sent

us to ID right away who HAPPENED to know about PFS. So we were very lucky.

Only once, when switching insurance did we run into a STUPID pedi, who kept

telling me..yeah I have heard of these PFS but this kid is just sick..did strep

test, did ebstein barr test....NEGATIVE..DUHHH...anyway, got another PEDI, who

listened to me, then got referred to Stanford...hence where we are today!

I would say every other time they test 's blood for the counts

etc....during an episode and during a HEATHLY time too. So..thats my

TIMELINE...hope it helps..just don't give up on your pedi! PUSH!

cINDY