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#91518 - 12/06/06 10:37 AM Re: Welcome!
Anonymous
Unregistered


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

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#160969 - 11/06/09 12:35 AM Re: welcome desk, welcome cocktail [Re: ]
Rocky Offline
Registered Visitor

Registered: 11/05/09
Posts: 10
Thank you, you are most welcome.

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#163336 - 12/15/09 01:33 PM Re: Welcome! [Re: ]
MisZ5 Offline
First time visitor

Registered: 12/15/09
Posts: 1
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?


Edited by MisZ5 (12/15/09 01:39 PM)

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#164331 - 01/03/10 08:07 PM Re: Welcome! [Re: MisZ5]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 235
Loc: 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!

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#184312 - 09/09/10 01:53 PM Re: Welcome! [Re: ]
Mom_of_five Offline
Registered Visitor

Registered: 09/09/10
Posts: 3
Loc: NY
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)

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#184314 - 09/09/10 02:06 PM Re: Welcome! [Re: Ken Delano]
Mom_of_five Offline
Registered Visitor

Registered: 09/09/10
Posts: 3
Loc: NY
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)

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#184336 - 09/09/10 06:08 PM Re: Welcome! [Re: Mom_of_five]
TennisAce Offline
Registered Visitor

Registered: 09/19/05
Posts: 1317
Loc: 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.

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#184350 - 09/09/10 08:38 PM Re: Welcome! [Re: TennisAce]
Mom_of_five Offline
Registered Visitor

Registered: 09/09/10
Posts: 3
Loc: 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)

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#185167 - 09/19/10 11:09 PM Re: Welcome! [Re: MariaElena]
mahanfamily Offline
First time visitor

Registered: 09/19/10
Posts: 1
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

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#237556 - 07/26/12 04:39 PM Re: Welcome! [Re: ]
Tmansmum Offline
Registered Visitor

Registered: 07/26/12
Posts: 4
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!

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