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#271261 - 05/05/15 07:07 AM New with Questions
nymom23 Offline
Registered Visitor

Registered: 05/03/15
Posts: 2
Hi all,

I am new here... I have a 23-year-old son who most likely has AS. Rheumatologist brought it up about a year ago... He has the genetic markers for it…. he is in pain daily especially back and neck. He is currently working with the rheumatologist and is taking Celebrex which is helping some.

I also have an 11-year-old daughter who has the genetic markers for AS too. She has also been having issues with her knees, ankles and heels. Her knee is swollen just below the knee cap at the top of the bone and is painful… especially to the touch. I think they call it enthesitis. It is where the ligaments attach to the bone. The docs have mentioned Osgood schlatter as a possible cause.

I haven’t really thought about her having AS too until I started reading about the early signs for it in kids as being problems with her knees, heels and ankles. I just assumed Osgood schlatter and have been icing and resting as needed. My son was exactly the same way when he was her age. Sooo it makes me think twice.

Would you all think that this is more than Osgood schatter and I should look into this further?? Is there a benefit to an early diagnosis? If so what is that? My husband was curious.

We have a follow-up appointment with the geneticist in 2 weeks…

Thanks for any responses.

Kim

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#271266 - 05/05/15 07:59 PM Re: New with Questions [Re: nymom23]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 233
Loc: Ventura County, CA
Hi Kim- I don't know enough about OS to say if that is an accurate diagnosis. My son was diagnosed with juvenile spondy at age 11, but had symptoms much younger. He is now 19 with full AS. His first symptoms were similar to your daughter's: very painful heels and pain in his ankles and knees. By the time he was diagnosed he also had lost flexibility in his hips, and his ankles were noticeably enlarged. Enthesitis was his biggest symptom initially, and that is very common in younger children. Given your son's history, I would definitely consider AS in your daughter.

The benefit to early diagnosis is controlling any inflammation as much as possible. Long-term inflammation causes permanent joint damage, so the sooner it is controlled, the less damage. My son was started on NSAIDS and then methotrexate originally but w/o great results. He has been on biologics- first Enbrel and now Humira- for over 8 years now with great results. He went from having difficulty walking, to running cross country in high school to now playing NCAA soccer in college. He must take his meds weekly to function well, he does yoga and stretches to stay flexible and he stiffens up if he doesn't stay active. He has flare-ups sometimes and it takes him extra time to start moving comfortably in the morning, but overall he is doing very well! Good luck and keep us posted.
Jennifer


Edited by Ericsmom (05/05/15 10:58 PM)

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#272709 - 11/26/15 04:16 AM Re: New with Questions [Re: nymom23]
johndean Offline
First time visitor

Registered: 11/18/15
Posts: 1
you can send me a private message and I think I have some anwers for you..

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