Update Claire - T&A

[Guest guest]

Hi Everyone,

has a tonsillectomy scheduled for January 22. This

comes after a very frustrating visit with a pediatric

rheumatologist.

About 6 months ago MC started getting conjunctivitis, mild eye

swelling, joint pain, loose bm's/diarrhea and more rashes with her

episodes. The episodes have increased in frequency, duration and

have added additional symptoms since they began 1 ½ years ago.

Then, in November, she developed arthritis in her toe and had mild

swelling in her fingers.

The rheumy did not seem to think it was Systemic JRA because her sed

rate and WBC looked good….which is very good news.

They now feel it is between TRAPS and and want me to continue

logging for another 3 months (even though I have detailed records

for the past year) and do genetic testing in April when we go back.

Needless to say, this did not go over well with me. My frustration

level is pretty high. I'm tired of watching MC fever for 19 days in

a row and the thought of giving her more steroids and colchicine is

just too much. (she has a tendency to get neutropenia and

leukopenia on her own and colchicine can cause it to become worse)

At this point, I feel we have nothing to loose by doing the

tonsillectomy and everything to gain. My hope is that if it is

, then the tonsillectomy will work. If it is a different PFS,

then we will go from there.

Truthfully, I'm at a loose as to what to do. I'm worried the

tonsillectomy won't work because of the other symptoms but find the

likelihood of it being TRAPS so remote. We have no family history

of anything like this in our family.

When she started getting fevers they would be every month for 3-4

days, red throat and occasional mouth ulcers. Now, she will get

into episodes for so long I can't tell when one is starting or

stopping. Although, she has not had one since the middle of

December.

Do I push the doctor's harder to go the genetic testing now? For

those who had genetic testing, what did your doctors do? Try the

tonsillectomy and hope for the best? What would you guys do? I'm

frustrated and unsure how to proceed with this.

Thanks for listening to this very long post.

Micah

Mom to (2.5) PFS