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[Guest guest]

I have a daughter Jaye and she is 11 but will be 12 in a week. A

month ago she was diagnosed with JRA. Everything started on October 26th with

her

foot/ankle so swollen and painful with no explanation of injury. An

appointment to the peditrician and x-rays showed nothing. A week later the

swelling

was from her toes up past her knee and getting worse, we had another appt.

with the ped and plenty of blood work and scheduled to see the opthamologist.

After the appointment to the opthmalogist to check for interocular inflamation

which came back negative, we were scheduled to see a JRA specialist in mid

February. The next week the skin on her foot started looking brown and there

were areas of dead skin that started flaking off. The ped. scheduled a

dopplar study to look for blood clots and found nothing. Since things just kept

getting worse and nothing was getting better I requested to see if we could

find

a different specialist before mid Feb. We were able to get into KU Med

Center on November 28th. During the first month the ped. continued to say to

keep

walking on her foot.

Immediatly the JRA spec. said to get her on crutches. She put her on

Celebrex and ordered a bone scan and more blood work.We saw the JRA specialist

again on Dec. 19th and she diagnosed her with JRA. The bone scan showed an

irregularity that she feels is JRA. The bloodwork all came back within normal

ranges exept the one on the Thyroid and it was below normal. Her foot was

still

swollen and painful to walk on but it was beginning to improve. She ordered PT

for her and suggested we go to a pool for exercise as often as we can and

took her out of her P.E. class. At that time she also added hydroxichloroquine

daily.

After two and a half months her foot was normal again, no crutches and no

limping. After crawling up the stairs on her knees for two months we are now

again walking. We no longer are going to PT but are trying to get to the pool

five days a week. It is something loves anyway and about the only

physical activity she can do at this point.

Two days ago she called from school telling me that she was having more pain

in her foot and yes it was swelling again but not near as bad. She has alot

of stairs at school and for a while they were allowing her to use the

elevator. She would prefer to walk the stairs with her friends and so now for a

week

she did walk the stairs. I am not sure but maybe we will have to limit the

stairs from her again.

We are scheduled to see an endocrinologist in March to see what to do about

the thyroid. I really do not want to put her on another medication. When

was 5 she began having seizures and so is already on two anti-seizure

medications. She is also using a steroid cream for the dry patches she has that

appear on her skin.

As far as I know in my family and in her fathers family there is no history

of Rheumatoid Arthritis. I know nothing about the RA and so am totally lost.

I am searching on the internet for information and of course most of the

information does not sound good. I try to not get discouraged but some days it

is hard. But when was diagnosed with the seizure disorder I knew

nothing about that either and have learned quite a bit. She has been seizure

free

for nearly three years now and that is promising.

I have friend that found this site for me so I have read some of the e-mail

for a couple of days. If you have suggestions or thoughts to share with me

please do so.

Veri, mother of