Second visit to the ID at COOK

[Guest guest]

Well, we are off tomorrow to head back to Ft Worth. For the past

three months we have kept a fever journal. We have been giving Kaia

prenisolone at the onset of fevers and it typically wipes them out in

5-6 hours. They have been coming more frequently and with no

particular pattern, anywhere between 11 and 17 days. I am hoping for

some more testing and have looked into our insurance for genetic

testing...they will cover it if requested through primary care so

hopefully they will work together and get this done. I am confident

that the DRs at Cook Children's are goingto get us a definite

diagnosis...I will post an update latter in the week.

Tera Wong

[Guest guest]

Tera - We ended up with Dr. Panaro at ish Rite in Dallas - and

she is a local expert on . She works with the docs at NIH and

everything. If you feel as though you need more answers or whatever

don't be afraid to ask to be referred there. It's free - but it takes

3-4 months to get in. And she is super knowledgeable on the

subject . . .

Good luck and let me know what you find out!

Hannah