Re: Traps testing

[Guest guest]

Hi Charyn,

I have the GeneDx swabs in my cupboard and the requisition filled out for

self-pay. ’s pediatrician has requested I hold off until she see’s yet

another Rheumatologist on Jan 5th. I’m reticent about continuing to jump

through all these hoops. I’m aware the new Rheum has very little experience

with periodic fever disorders, I have a copy of the diagnostic flowchart

used by the group of physicians “feverboard” and it is very lacking. If I

don’t jump when told I would likely get a nice letter stating my lack of

faith in the care provided as a reason to release the physician from

providing future care. There is a physician shortage here and and I

until recently only had walk in clinics as primary care. I’m trying really

hard not to burn bridges. The Rheumatologist typically does not order

genetic testing. If passes his criteria he will refer to a geneticist

who will request in writing permission for testing from the government. (OH

CANADA, MY HOME AND NATIVE LAND….) LOL After working in the US as a nurse

for nine years the bureaucracy here at times is a bit much. Yes our

healthcare is socialized, but at what cost. The pediatrician was floored

that I’d even consider paying myself for the testing. (What pay for health

care!!! Never in the thought of a typical Canadian)

Thanks for your persistent encouragement to do the testing, it doesn’t fall

on deaf ears, just frustrated careful ones. It will get done come hell or

high water. (and empty bank account) LOL

Merry Christmas to all!

Walton

(5) (?)

Nanaimo BC

Re: Eye pain

> Hi Satya,

> My five year old daughter also complains of eye pain. On

occasion it

> lasts for a little while and she will wear sunglasses and request

the lights

> and T.V. off. Most frequently though 's eye pain is shooting

and she

> suddenly has her hand go flying towards her right eye in shock

from the pain

> and she will wince or cry out. >>

Hi and Beverly,

I mentioned before that the eye pain and sensitivity you describe is

one of the defining characteristics of TRAPS. Kenny's periodic need

for sugnlasses and sudden, shooting pain is as you describe with

. Have either of you had your children tested for TRAPS yet?

Charyn, mom to Kenny, 4,

diagnosis changed from Pfapa to TRAPS, age 2

[Guest guest]

What is TRAPS testing? I'm new to all this and would like to find out as much

info as I can before my daughter sees the infectious disease specialist on

1/5/05.

Thanks so much!

[Guest guest]

> What is TRAPS testing? I'm new to all this and would like to find

out as much info as I can before my daughter sees the infectious

disease specialist on 1/5/05.

>

Fran explains this better than I do, but I'll try...

Pfapa is a fever disorder that is not genetically inherited. There

is no actual testing for Pfapa, it is a diagnosis by exclusion --

after other possible illnesses for which testing is available are

ruled out. With Pfapa, the fever episodes usually occur in a more

scheduled pattern...every 25 days...every 35 days, etc.

There are also several hereditary periodic fever syndromes that have

similar symptoms to Pfapa and for which genetic testing will give a

positive or negative diagnosis for the illness. These include FMF,

HIDS and TRAPS, all of which have symptoms that may include periodic

fevers (although not on as scheduled a pattern as with Pfapa),

muscle or arthritic pain, rashes, and severe abdominal pain. Eye

involvement (conjuncitivitis or eye pain or eye sensitivity) is

common with Traps and uncommon with the other fever disorders.

There are a lot of very informative articles in the file section of

this site. You should print them and bring them with you to your

appt. The articles here are what led to my son's testing for TRAPS,

which led to his positive diagnosis. You should also bring the

information for GeneDX, one of the few labs that do genetic testing

for these illnesses.

,

Please forgive me...I forgot that you live in Canada and have a

harder time arranging for the testing. I give you credit for your

patience and fortitude. it's got to be tough.

Charyn, mom to Kenny, 4, TRAPS

Brooklyn, NY