Hi everyone.
Really pleased to hear Megan is back home. Hope you get better soon. Also my thoughts are with Michelle sending gentle hugs.

My self I am off the Enbrel. Had to stop due to it causing severe issues with my heart. Go back to rheumy on the 24th and see what happens for there.

Now for my daughter.
Not sure how much of I have previously posted but she has had some major issues with her shoulder for years and more recently her wrists. Her wrists were made worse when she had a bad accident off her puch bike early this year. They have been gradually getting worse and now she can barely use her right hand. (yes she is right handed) luckily she has a laptop but still she has a lot of trouble. Even everyday hygene tasks are extremely difficult.

Anyway we went back to the doctor last week who decided to do some more blood tests. Funnily enough he re-tested her for HLA-B27 even though he had tested her for this before and it had already come back as positive. Oh well needless to say that test came back positive again and she also came back positive for RA. The doctor has now refered her to the same rheumy I go to. I don't know how long before she will be seen though as I had to wait for many months to get my first app.
I have an app on the 24th though and the doc said to ask about my daughter when I go and maybe even take her with me. Might help to reduce the waiting time for her.

My question to all you dear people is, where shoulod I go to find the best info for RA and kids? Does anyone know of any support groups or is the RA section of kickas the best for RA? I must confess I don't know that much about RA.

Many thanks
And all the very best to those KAers who are not doing so well. Much love to you all.

Trish
xxxx

sorry to hear about your daughter.

though i was 35 when mine started, my wrists were the first place to be hit hard. so hard i thought for sure i might lose my job over them.

PT, a cortisone shot, helped get them over the hump.

Gel ink pens instead of ballpoint were life savers.

everything for a long time, had to think ergonomically.

yeh, brushing teeth was one of the hardest things i had to do at the time. brushing hair as well; got hair cut short during that time to help out. clipping nails impossible.

one of the real turning points for my wrists was going on zanaflex. always imagined that maybe the enthesitis caused the muscles to spasm. but then the spasming muscles would "tug" at the tendon, making the enthesitis worse. in any case, the zanaflex allowed the dq tendonitis in both wrists quiet down.

about a month or so after the left wrist kicked in, so did the left "shoulder/upper back" (for me it seemed to be largely in the rhomboid area first, then spreading to the rotator cuff complex). then 1.5-2 months later the right wrist kicked in. that was it for about 2 years. then everything else joined in.

wonder if she'll be dx'ed with juvenile arthritis; sounds like it.
http://www.medicinenet.com/juvenile_arthritis/article.htm

good luck to you and her!

sorry enbrel did that to you!
sounds like what donette went through.

Trish - sorry to hear that news re your daughter. RA - suggest dropping into the RA section here on KA. Wendy is the knowledgeable RA person. Reckon she will put you on the right track - apart from checking out all the RA info on that forum - others also with RA will pile in with advice and help.

Hope your daughter gets a rheumy appt soon. This stuff sure does stink!

Takae care -

Thanks, will pop on over to RA area.

Sue: Doctor is still trying to decide if this is Juvenile RA or early onset adult RA. Most signs at this stage point to early onset adult RA and that is not good. Doc is leaning to adult RA because of her RA factor and the timing of symptom onset and number of Joints affected as well as the HLA-B27 +.

Thanks agian.

Trish, just wanted to send you and your daughter gentle hugs. I'm glad she has you to help her, and I'm glad you have her to focus on and love.

Warm hugs,

our daughter is 6 and since she had some "gut issues" we took her in to see an allergist. we also had her tested for the HLA b27 gene. And like me she is positive.
Since she seems like a mini me in many ways we decided to put her on a low gluten diet just to alleviate the impact on her possible hyper active immune system. this even though she didnt score that high on the reaction to gluten. Gluten makes your immune system work harder and with the way wheat is processed these days it is causing a lot of problems.