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#91508 - 04/07/04 06:26 PM Welcome!  

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This forum is for parents and teens to discuss their issues with AS and related diseases.

Welcome!

Chris

#91509 - 04/08/04 11:02 AM Re: Welcome!  
Joined: Dec 2001
Posts: 113
rabbjbmom Offline
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rabbjbmom  Offline
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Joined: Dec 2001
Posts: 113
Ramsey, NJ
Thank you so much for your quick response to my comment. I hope other parents of kids and teens will use this forum to post their experiences or ask their questions.

#91510 - 04/08/04 03:40 PM Re: Welcome!  

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You are very welcome. smile

#91511 - 04/14/04 08:47 PM Re: Welcome!  
Joined: Oct 2003
Posts: 96
Ryan's mom Offline
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Ryan's mom  Offline
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Joined: Oct 2003
Posts: 96
Williamsville, Illinois
I'd like to thank you for this addition as well. It's nice to have a place to go to discuss issues between parents of teens/and or just for the teens/kids. I log in daily just to see what's new on the horizon. This has been extremely helpful for both Ryan and me. Thanks again!

#91512 - 04/23/04 11:51 PM Re: Welcome!  
Joined: Mar 2004
Posts: 85
Kathi Offline
Member
Kathi  Offline
Member

Joined: Mar 2004
Posts: 85
California
I have 2 sons, ages 16 & 20. The 16 yr old has been positively diagnosed with AS. My 20 yr old has not been tested yet; however, my Rheumy believes he has it too. He has been stiff every morning for at least the past 4 years & has other symptoms too. My 16 year old was going to a chiropractor occasionally because of back pain. My sons' AS was suspected after I was diagnosed with AS less than 3 months ago. My son's are not taking this seriously at all. They believe everyone has stiffness in the morning and pain in their bodies. I can't convince them otherwise. Does anyone else have a son or daughter like this?

#91513 - 05/18/04 03:23 PM Re: Welcome!  
Joined: Apr 2004
Posts: 8
MariaElena Offline
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MariaElena  Offline
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Joined: Apr 2004
Posts: 8
I have a 15 yr old daughter that was diagnosed with AS in September., Since that time she has been on Celebrex, Naprosyn, Sulphasalizine and recently methatraxate. She has progressively gotten worse and has now started taking the methatraxate in injection form. We just returned from UCLA rheumatology and they have recommended the drug Embrel which is in injection form also.
Is anyone familiar with this drug? My daughter is in constant pain and she has difficulty walking because of the swelling in the feet. Her hands and elbow are swollen also and has started having pain in her rib cage.
I have AS but never had these severe symptoms like my daughter. Is anyone out there experiencing this? We are both so frustrated. I am hoping the embrel will do the trick.
On top of everything else...the cost of the Embrel is outrageous. How can people afford this?
If anyone has any advice..please help!!

Thanks...Maria

#91514 - 05/18/04 04:46 PM Re: Welcome!  
Joined: Mar 2004
Posts: 85
Kathi Offline
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Kathi  Offline
Member

Joined: Mar 2004
Posts: 85
California
Maria,

My 16 yr old son is now taking AS seriously after seeing our Rheumy. My son is obviously not as affected as your daughter is. The doctor put him on Naproxen 500mg twice a day. At this point, he isn't feeling any different, but it has only been a week. I'm totally confused about meds anyway. Some of the posts say NSAIDS make AS worse, but the SAA has them as usual meds prescribed for AS. I don't know what to believe. Good luck with the right meds for your daughter. I understand your concern.

#91515 - 05/20/04 06:30 PM Re: Welcome!  
Joined: Oct 2003
Posts: 96
Ryan's mom Offline
Member
Ryan's mom  Offline
Member

Joined: Oct 2003
Posts: 96
Williamsville, Illinois
My son was diagnosed at 15. He sees a doc at Mayo Clinic and we go back on June 10. He's hurting, but doesn't want to let anyone know or make a "big deal" out of it. Right now, they're trying to diagnose me with fibromyalgia ... I'm HLAb27 positive (like Ryan) ... I don't think I have it, but they're looking at it. I think this is so hard for the kids to accept; we just have to be there for them, and it's great to have a place to share concerns. I just wish there were more of us posting in this area. Ryan has connected with a couple of teens through this and that helps; moms need connections too! Our thoughts and prayers go out to all of our friends dealing with AS ... it's a challenge.

#91516 - 12/05/06 08:26 PM Re: Welcome!  
Joined: Dec 2006
Posts: 1
andrew's mom Offline
Junior Member
andrew's mom  Offline
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Joined: Dec 2006
Posts: 1
texas
My son is 14. He has shown signs of something since he was about two. He was diagnosed with arthritis at 11. And he was officially diagnosed with AS at 12. He gets three shots a week. He gets methotraxate and Enbrel. The Endrel has made a HUGE difference in his health. He is not stiff in the mornings. He has more flexibility. If it rains, he can get out of bed. He also used to get multiple mouth sores, I mean we counted 25 one time. He couldn't eat, he was losing weight and he didn't have the energy to be active. He now has not had a mouth sore in about six months (he started Enbrel at that time) and he joined his old soccer team again. He hates getting the shots, but the doctors say doing this now will help keep his spine from fusing when he gets older.
I have a 37 year old brother that has AS. He wasn't diagnosed until he was in his mid 20's. He showed signs as a teen, but no body know what was wrong. He is doing well. He is very active and I think that helps tremendously. He doesn't take in of the drugs that have come out more recently because when he was first diagnosed they would try him on all different kinds of things that didn't work and had terrible side effects.
My son has a great team of doctors and a wonderful hospital that we go to.

#91517 - 12/05/06 09:05 PM Re: Welcome!  
Joined: May 2004
Posts: 1,526
Ken Delano Offline
Registered Visitor
Ken Delano  Offline
Registered Visitor

Joined: May 2004
Posts: 1,526
Minnesota
Welcome to the group Andrew's Mom! We're sorry you had to find us, but I am sure you will be glad you did. THere is a whole bunch of great folks here who Completly Understand what Andrew, and your brother, is going through.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
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