an Update (Enthesitis related arthritis)

[Guest guest]

Hi here has been seen by our local kids long term care

section which deals with Chronically ill children. starts her

hydrotherapy on monday coming and the physio will be coming tomy

house this friday am.

Rainbow house as it is known has arranged for her eyes to be checked

for Uvitis and gave me a brief run down of her condition which ive

been told is the most painful form of arthritis and that basically

there isnt much i can do for her except give her plenty of pain meds

and love.

Do any other children when walking around for long periods of time

instead of hip and knee joint problems get sore backs and necks......

seems that if she has to walk alot she pays for it later on. if ilet

her rest on the couch or in her bed instead of her going out and

about she has no pain levels at all. Am i doing something wrong or is

this part of the condition?

She is on Codiene and paracetamol for pain, Piroxicam, Sulphasalzine,

and steroid tablets.

I do hot packs and hot long baths cold packs make her flare up. Any

thing else i havent thought of to try relieve pain. If she doesnt

move around much she gets very little pain.

Is there anyway of massaging her joints down where there is pockets

of fluids (back of hands, knees, ribs).. or am i looking for silly

options here? sorry to be a pain but im very new to this..... 1 Month

today is all ive been dealing with this. Robbin your emails have

been a Godsend and i appreciate all the mesages i have been given so

far and the advice im watching on the boards is great.

Blessings

(single mum to 10 1/2 severe ERA HLA B27 positive. going

slowly mad)