What do we do now.

[Guest guest]

My daughter had episodes since she was 18 months. At the age of 8

she was diagnosed with Pfapa. Great. She went form 8 to 13 without an

episode. Now at 13, she is starting to have the fever, mouth ulcers,

headaches, ect. We took her back to her doctor in December and was

told that the Pfapa was back. We were given a single dose of pred

and instructed to give it to her when the next episode came. Last

wednesday, told me she felt like she was getting sick and she

had a mouth ulcer developing with a low fever. We gave her the pred

and within 12 hours she was feeling fine. By the next monday, she

develped a fever, headache, nausia, and 2 mouth ulcers. Now it is

wednesday and we are in day 3. We have been able to keep her fever

controlled with tylenol but did not give her the pred. I called her

doctor, told her what was going on and now she said that does

not have because the episodes would not come within a week and

that we should see a rheumatologist. What does that mean?.... When

was 8, she was having episodes back to back. She was

hospitialized at one point. I really think that she blew me off.

Maybe she had no clue to who I was. My daughter had seen every doc

under the sun and does this mean we have to go through all this

again?...... Her regular doc is at a lost to what to do and we

thought that this was under controll with her ifectious disease doc.

Guess I was wrong. UUUUUUUUUGGGGGGGGHHHHHHHHHHHH!!!!!!!!!!!!!!