Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Topic Options
#271204 - 04/29/15 02:56 AM New to this
ateacch Offline
Registered Visitor

Registered: 04/23/15
Posts: 8
Loc: Wisconsin
Hello everyone, I am new to this forum. My son has been having issues with lower back pain and knee pain for the past 3 years. We have been to see many different doctors. He is HBLA-27 positive and a history of anklyosing spondylitis in the family. Our journey has been a bumpy one. Fortunately scans have been good. Unfortunately for most of our local doctors that has meant he is depressed, constipated, or just going to have to live with the pain. For 8 months we had been treating him for Lymes as a doctor assured us that Lymes was the problem. We had no improvement while on a ton of antibiotics. We are from WI and traveled to NY to see a doctor who diagnosed him as having Spondyloarthropathy. I guess I am looking to know more about what that means for him?

Top
#271221 - 04/30/15 12:48 PM Re: New to this [Re: ateacch]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Sorry to hear about the struggle. Some of my friends with Lymes report very similar symptoms as SpA, so I am sure misDx happens a lot.

What spondylitis means for your son -and you- is difficult to say. Some people have a very difficult time and some have a more mild case. some go through long periods of low disease activity.

Your son is blessed to have you. believe it or not, several parents believe the first doc that says "it's growing pains" and don't explore any further. Now that you know, you will know what helps and what doesn't. smoking, drug abuse don't help. being active does. there is no cure (yet) so the meds wont solve everything, but they help a lot of people live normal lives. Now that you know, you will also know what complications to watch out for and guard against.

If your son is a teen, then check out the SWIFT site http://teens.spondylitis.org/

There is a ton of info on this www.spondylitis.org site. The last issue of Spondylitis Plus magazine has some articles regarding Juvenile spondyloarthritis. call me & I'll mail it to you 800-777-8189.

another helpful thing for you to try is going to a support group meeting. there is not one in WI, but perhaps next time youre in NY or another state you can check it out. You can join my group via skype if you want. let me know, because I have to get it ready. http://www.spondylitis.org/patient_resources/support_groups.aspx

Kind regards,
Rich


Edited by RAHMBA (04/30/15 12:52 PM)
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

Top
#271223 - 04/30/15 02:56 PM Re: New to this [Re: ateacch]
ateacch Offline
Registered Visitor

Registered: 04/23/15
Posts: 8
Loc: Wisconsin
Thanks for the response.
Started on Relafen or Nabutome. Hopefully by early to mid week we will know if this works.
Looking at going to 1/2 day for school starting next week until the end of the year. Having an issue with one staff member who feels that an assigner was given out 2 weeks ago should have been turned in on Monday. During those 10 days, he only made about 5 days of school. 3 of the days we were flying to NY to see DR. My son has an IEP that states extra time to complete assignments. Also a handbook policy that he should get 2 days for every day he was gone. Staff member refuses to budge. Principal is not the friendliest.
If they think I wouldn't change this--ugh. I just can't get it through to them that this pain has been his life for the past 3-4 years so he is not going to cry. I also can't seem to get them to understand that his brain is not working the way you might expect other 6th graders do. He can't remember 1/2 of what you say let alone if you give him a ton of things to do.

Top
#271311 - 05/08/15 10:15 AM Re: New to this [Re: ateacch]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 232
Loc: Ventura County, CA
It sounds like you might be in one of the many areas without access to a pediatric rheumatologist. I can't imagine how much more difficult that must make it for you! The treatment route for juveniles is so different than that for adults, so it means you have to be that much more familiar with current practices for children to make sure your son is getting the right treatment. Interesting about the Lymes misdiagnosis- we are in CA but my uncle was in WI and was diagnosed with Lymes many years ago. He was finally diagnosed with AS when he was much older and had already suffered permanent joint damage. I think Lymes must be more prevalent in your area so that is the immediate conclusion that many Dr.'s jump to. I don't have any great advice- you should know soon if the new meds will work. Like I said in the other thread, our Peds. Rheumy indicated that NSAIDS are usually not enough in cases of juvenile spondyloarthropathy. My son saw virtually no improvement with them. Biologics have been a miracle drug for him and he has been using them for around 8 years now. As long as he maintains his drug regimen, he has little inflammation and pain and is able to maintain an extremely active lifestyle. Be sure to let us know what happens!

Top
#271321 - 05/08/15 04:29 PM Re: New to this [Re: ateacch]
ateacch Offline
Registered Visitor

Registered: 04/23/15
Posts: 8
Loc: Wisconsin
Thanks for the response. Called the dr. In NY today. They wanted some blood work done to make sure all was well. So, by the time labs are run today and read, it will be Monday before the dr. Can get the labs to see what he thinks. Hopefully early next week we will have a new plan.

Top
#272757 - 12/03/15 10:13 AM Re: New to this [Re: ateacch]
BlueRidge Offline
Registered Visitor

Registered: 11/16/15
Posts: 3
Loc: Virginia
Did any of your teens develop stomach issues? Reason I ask, is have HLA-B27, AS, fusing SI and countless bouts with Iritis. I'm 51 experienced incredible pain chocked up to "growing pains," just a different generation.

My 20-year-old son is double jointed, began complaining about lower back pain, ankle, knee and shoulder pain in mid-teens. I will have to see if we have a peds Rheumy, perhaps at a town further from the one we live in. Given that the paternal grandmother had it, I have it, this is not out of the realm of possibility (sadly, I wonder if it is not actually a probability).

Any suggestions would be most appreciated.

Top
#273122 - 01/21/16 06:19 PM Re: New to this [Re: ateacch]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 232
Loc: Ventura County, CA
The only stomach issues my son had were when he was on MtX- he had to take Omeprazole to prevent upset stomachs. As soon as he was taken off the MtX, his stomach issues cleared up. Since stomach problems can be the result of diseases that can be related to AS, I wouldn't be surprised. Hope you found some answers!

Top


Moderator:  ElinAslanyan