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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
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rabbjbmom Offline
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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
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Ryan's mom Offline
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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
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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
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MariaElena Offline
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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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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
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Ryan's mom  Offline
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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
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andrew's mom Offline
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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
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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
#91518 - 12/06/06 03:37 PM Re: Welcome!  

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Yes, welcome Andrew's Mom smile

I may as well mention now that we are developing a website for teens with spondylitis. We hope to have it launched the second or third week of January.

There is also a relatively new teen AS support group in Orange County, CA.

See the Support Groups List - click here for details.

Best,

Chris

#160969 - 11/06/09 05:35 AM Re: welcome desk, welcome cocktail [Re: ]  
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Rocky Offline
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Thank you, you are most welcome.

#163336 - 12/15/09 06:33 PM Re: Welcome! [Re: ]  
Joined: Dec 2009
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Thank you. I have never done any of this before so I am a bit overwhelmed but feel that I am in the right place for help and answers to alot of my questions. My 13 year old son was just diagnosed. We are seeing a specialist on Thursday. Not sure what to do or ask at this appointment? Any suggestions?

Last edited by MisZ5; 12/15/09 06:39 PM.
#164331 - 01/04/10 01:07 AM Re: Welcome! [Re: MisZ5]  
Joined: Oct 2007
Posts: 235
Ericsmom Offline
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Ventura County, CA
Hi MisZ
Just wondering what you found out. I didn't see your post until too late to reply, but hope you were able to find out more info. I don't know if it would help but I found that the book below has a lot of good information on juvenile arthritis in general as well as ASpA specifically; also on meds and treatments:

"It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone, and Joint Pain, Rheumatic Diseases, and the Latest Treatments"
by Thomas J. A. Lehman

I got it used on the internet so you might try there. It is very easy to read and has tons of info. My son is 14 and was diagnosed at 11. His ankles were so swollen that they hit each other when he ran and he was stiff and achy. He started on NSAIDS then progressed to oral methotrexate. That wasn't enough so he was started on Enbrel about 2 years ago and then switched to Humira about 6 months ago. The Enbrel worked miracles and he was able to go back to sports full time. He started having hip, heel and ankle pain again so they switched him to Humira. It is working pretty well although he is still haveing some pain and stiffness. He loves sports and is able to do everything again, although there is pain often afterwards especially. He playing club soccer, high school soccer, and ran 7-10 miles a day with high school cross country. His doctor has put no restrictions on him and in fact loves that he is active. the only thing I would suggest is that if you have access to a pediatric rheumatologist, to use them. They definitely have a more aggressive approach to treatment than adult rheumy's. Maybe you are already using one, or possible don't have access since there are not many of them.

Let us know how it is going- good luck!

#184312 - 09/09/10 05:53 PM Re: Welcome! [Re: ]  
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Mom_of_five Offline
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My son is 16 and was diagnosed 6 years ago. I have been having trouble getting my son through school. It always seems to be a fight to get what he needs. Every year I go in to explain his disease, but because he "looks" normal I always get some flack. He is going every day for half days so that he can actually make it there every day. Now the school doesn't want to let him have a math specialist for the math class he misses. He is tired of all the let downs with school and I am looking for alternatives to help or if anyone knows what the schools in NY state are required to give him.


Son age 16 diagnosed 2003, other adult children have symptoms but don't want to be tested (fear of losing insurance)
#184314 - 09/09/10 06:06 PM Re: Welcome! [Re: Ken Delano]  
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Mom_of_five Offline
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After reading a few of these posts, I thought I would share what our family has gone through. My son was diagnosed around age 10. It was a fairly quick diagnosis since I knew what the disease was and had a husband with the same symptoms. Since that time my son has taken almost everything to control the pain. Enbrel, Humira (did not do shots well since he has no fat on his body),He also has been on methotrexate, mobic and a multitude of other NSAIDS (which haven't helped). Now he is on Remicade. Basically we are trying to prevent any fusion. He still has pretty good mobility, but will have days where it hurts to get out of bed. Scarier still is when he'll say it hurts to breath because the pain runs up his back. The biggest thing we struggle with is school. Between teacher comments or judgements they make about him, I have become very discouraged. When he was in 8th grade, he wanted to go to college, now he is in 11th and just wants to get out. I try to keep encouraging him, but I just don't know how to keep him motivated. I grew up with a dad who had rhuematoid arthritis and I know my son will have challenges in his future, so I really need to find ways to keep him motivated now.


Son age 16 diagnosed 2003, other adult children have symptoms but don't want to be tested (fear of losing insurance)
#184336 - 09/09/10 10:08 PM Re: Welcome! [Re: Mom_of_five]  
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NJ
Hi Mom of 5,

I am sorry for son's troubles. I hope you can figure out the hs thing. I don't know what state of NY is req to do for children with disabilities. I struggled and failed for mine is MA, but I was fighting for learning disabilities (ADHD and other).

What I will tell you though is, or should I ask, could it also be a little of the age thing? I know once my kids into hs they didn't like school at all, largely cuz it was the cool thing. Once we kept pushing and trying to keep my daughter in the right direction, we found a college that she loves and is totally re-engaged in school.

We also had a struggle since she wasn't diagnosed with ADHD until senior year in hs. We were able but had to pick up the costs of a math tutor who was fantastic. My daughter actually wound up with an A a couple of quarters in calc despite being told this would be a problem course.

Keep fighting!


Daughter diagnosed 2004; son diagnosed 2006. Both are currently without spondy meds and currently in a medicine induced remissions. One has been pharma free for 3 years; the other one for 2 years.
#184350 - 09/10/10 12:38 AM Re: Welcome! [Re: TennisAce]  
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Mom_of_five Offline
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NY
Thanks for you input,
Oh yea, part of it's his age and his frustration with everything. I will be looking into some on-line courses for him to do at home since they don't seem to want to help. We will probably keep things at the bare minimum at school so he will graduate on time. I just want him to see that he is bright and can do anything he wants. He knows he may have physical limitations when he is older (his dad is fused to L4 and uncle is fused completely through spine), but I want to make sure he is able to have some kind of future working, especially if his body won't let him get up everyday.

He started school two days ago and already is posture and disposition changes. He comes home lays on his side and stays put for an hour. Then he seems ready to go again. I can just see it in his face and it breaks my heart.


Son age 16 diagnosed 2003, other adult children have symptoms but don't want to be tested (fear of losing insurance)
#185167 - 09/20/10 03:09 AM Re: Welcome! [Re: MariaElena]  
Joined: Sep 2010
Posts: 1
mahanfamily Offline
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Maria,

I also have a daughter with AS. She is now 18 and was diagnosed in April of this year. We thankfully only went 4 months not knowing what she had. She is taking enbrel now and it is working. For the last 9 years she has played competitive volleyball and was lucky enough to get a scholarship. We thought it was all over and she would not play, it took about 2 months for it to even out but, she's playing, taking 15 hours in college. Her pain is still there but, nothing and I mean nothing like it was. There is a copay card that comes with the enbrel, it is great! We have insurance but, it doesn't pay all. The copay card takes care of the rest. I felt your pain thru your email and I hope this helps you both. My prayers are with you. Rhonda

#237556 - 07/26/12 08:39 PM Re: Welcome! [Re: ]  
Joined: Jul 2012
Posts: 4
Tmansmum Offline
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Thank for letting me join! I have 16yr old son who is waitingfor the HLA-B27 results back. We went on tues to the Rheumys office, he seems pretty certain that he has AS. I myself have lupus,Sjogrens and uveitis. So we were looking into the auto immune disease because he was exhibiting a lot of the symptoms. Just wanted to say hi!


Sammie ~my16yr old is going through being dx'd, we are taking it a day at a time!
#275548 - 08/03/16 03:24 AM Re: Welcome! [Re: ]  
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fayeda32 Offline
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Hey, I'm new here. I just want to say a hi to all smile Hope everyone is doing good.

#275577 - 08/04/16 01:11 AM Re: Welcome! [Re: ]  
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Jessie10 Offline
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Welcome fayeda32!


26 y/o female. HLA-B27 negative. Dxd AS 4/2016
Enbrel, naproxen
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