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juvenile spondyoarthritis #91565
01/17/06 11:17 AM
01/17/06 11:17 AM
Joined: Jan 2006
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florida
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jodylin26 Offline OP
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jodylin26  Offline OP
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florida
does anyone have a child diagnosed with the above? I just had a follow-up appt with the pediatric rheum and my 14-year old daughter tested positive for the hla-b27 gene. i have been crying all night. she has had severe pain in her heel and ankle area for 6 years now when she walks too much and we all thought it was a "convenience pain" when she didn't want to be somewhere....after so many years (and you know your own child), i knew something was really wrong. her dr. is now scheduling her for an mri of her pelvic area.... he really seems to know what he's doing and it seems like it will be forever to wait 2 weeks for her followup appt. my child has adhd and is defiant and i am so angry...she doesn't deserve this....


jody
Re: juvenile spondyoarthritis #91566
01/17/06 09:09 PM
01/17/06 09:09 PM

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Hi Jody,

Sorry to hear about your daughter, but now that there is a diagnosis, treatment can begin.

For reference:

Click here - Juvenile Spondyloarthropathy / Spondyloarthritis

Also, you may want to post this on the General Message Board as well, since it is more heavily trafficked. A know of a couple of regular posters have children in the same position.

Best to you and your daughter,

Chris

Re: juvenile spondyoarthritis #91567
01/19/06 12:29 AM
01/19/06 12:29 AM
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Posts: 246
Australia
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Whilst I don't know the pain and anger you are experiencing as a mother, I can tell you what it is like to be the child...

A background, I am still awaiting a firm diagnosis of AS but I have suffered from chronic inflammatory pain in most joints for 12 years(I am now 24yo) and also have the back pain that accompanies AS. My Mum has also suffered tremendously with this pain for more than 30 years and has had four spinal surgeries to try and counteract the now very rapid degeneration.

Firstly, a diagnosis is a good thing and it most certainly is not a death sentence or a sentence to a lesser life! My Mum, despite her condition, played lacrosse for Australia for many many years, had 3 kids, and basically does everything she wants to do when she wants to do it and is the strongest and most amazing female I have ever come across. I too have represented my State in lacrosse and have played nearly every sport available to me - Some days I was in more pain than others but it certainly never stopped me being a normal rambunctious teenage girl! In fact, I have achieved far more than most of my friends as I learnt not to let anything stop me from doing what I want...

I know from watching my Mum that it is very hard to have a child in pain, but my Mum and Dad were determined to ensure that I never hid behind the pain - I was always raised to see that the pain and occasional immobility was actually a very small part of my life, and a managable part of my life, what mattered most was that I never used it as an excuse to not try or to be different to others. Sometimes I needed a little more rest than other kids, but that didn't ever mean I was significantly different. They got the flu or a cold, I got joint pain - No biggy...

No one really deserves anything like this, but it really comes back to the way you chose to see it - I prefer to think that I was "chosen" to have it cos I am stronger and tougher than the rest! laugh Hehehe - Its egotistical but it works for me!

Being angry and defiant is OK, its normal, hell its probably even healthy for a while, but being angry and defiant won't make this go away. Being well educated and being honest with friends etc will make the burden much less though and that will certainly help!

Advice for your daughter - Please don't see this as a road block, it is just one more hurdle in life, if you can't jump it take anouther route but don't let it stop you from reaching your destination.

Definitely chat and interact with all the other people on this forum, they are all amazing people who come from a huge range of backgrounds and each story is more a story of courage and achievement than it is a story of despair...


--Kris--

I used to care but now I take a pill for that!
Re: juvenile spondyoarthritis #91568
02/01/06 04:01 AM
02/01/06 04:01 AM
Joined: Jan 2006
Posts: 8
florida
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jodylin26 Offline OP
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florida
Hi everyone that responded to my 13-year old with spondylitis. She started complaining about her heel and surrounding area in such severe pain when she was about 7 and for all these years, until we found a pediatric rheumatologist, everyone thought this was a "confenience pain" when she didn't want to do something.

It has just continue too long and i knew something was wrong...she tested positive for the gene and the dr. tried her on relefen for one
month.....with no improvement...now he is suggesting humira...does anyone know about this every two week injection? Any parent would be nervous about this.

Thanks for listening.

Jody


jody
Re: juvenile spondyoarthritis #91569
02/01/06 04:46 AM
02/01/06 04:46 AM
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Posts: 246
Australia
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I recommend posting to the General forum - There are a few parents on the forum who have been through the same process you are now going through and I am sure that you will get lots of information about what to expect etc...

Also, under the About Spondylitis pages there is information about the various drug treatments that might help you out a bit: http://www.spondylitis.org/about/as_med.aspx


--Kris--

I used to care but now I take a pill for that!
Re: juvenile spondyoarthritis #91570
02/01/06 06:08 PM
02/01/06 06:08 PM
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Posts: 113
Ramsey, NJ
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My son and daughter have spondyloarthropathy althought they are not HLA-B27 postitive. My son is 17 and was diagnosed at 12. My daughter is 19 years old and was diagnosed at 16. First thing is to make sure your daughter is seeing a Board Certified Pediatric Rheumatologist. Children present differently, handle medications differently, etc., so it is really important that the doctor be a pediatric rheumatologist. The next thing you should know is that there are lots of medications. Many take a while before you know whether they are going to work and not every drug works for every patient, so it is a matter of trial and error. However, you will find something that can help her and make her life easier. In the meantime, you need to speak to the school and talk about 504 accommodations. These are accommodations that are legally required of public schools in the United States to make it easier for your daughter to get through her day. If you would like to e-mail me you can at rabbjbmom@optonline.net. Good luck.

Karen


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