Re: Question re: psoriatic arthritis

[Guest guest]

Hi Lynn! I'll tell you what I know with the caveat that it's coming from me, definitely not as educated as many others on this site, and you can take what you can. Owen (2 at the time) originally had an avascular necrosis in his left hip. They called it Legge-Calve-Perthes disease. Eventually his feet started to swell. They called it pauciarticular arthritis. When his fingers started to swell, they started talking about polyarticular arthritis. When his back started to ache, they started talking about psoriasis as a factor. In order to diagnosis him with it, though, they need to see a psoriasis rash. I have 9 brothers and sisters, we all have psoriasis (none of us have obvious arthritis, though, although I imagine it could have been missed in our large family) My understanding from my doctor is that it presents first as pauci, then poly, then JAS. Eventually a flare-up of psoriasis appears. My 7 year old year old Liam is tentatively being diagnosed with juvenile ankylosing spondylitis. Honestly, this little boy has been so sick I have a hard time believing that they know what is going on. In the past two weeks, he's had an arrhythmia in his heart due to (supposedly) a costochondritis, even though it's lasted two weeks. His lymph nodes are so swollen he has taken to holding his neck when he walks around, which isn't much these days, and he's on 60mg of Prednisone (the highest I've even heard of) with no effect whatsoever to his neck pain.

So, there you have it, my limited information on this. Enjoy your farm!

-- Question re: psoriatic arthritis

Hi :I am mom to Mickey (systemic jra diagnosed at 3, now 9). I have been "lurking" for a while, I used to be very active on the list but with a change of lifestyle I've had a hard time keeping up with everything. It was a happy change of lifestyle... we moved to a small 'hobby' farm and now I have a geriatric derelict house to maintain - but also 5 horses. I put up with the house, the girls and I love the horses! Who needs therapy...Anyhow - sorry for the digression. Your email below mentions psoriatic arthritis and you also say your son had a classic presentation of it. I have to admit, I haven't read much about that subtype of arthritis but would like to learn more. What are the classic symptoms you mention? You said the sorts that definitly differentiate for the psoriatric part often don't show up for 10 years. What are his symptoms now? I am just wondering... Mickey's diagnosis is definitely systemic, but I haven't seen much discussion of this subtype and would like to educate myself a little better. Are they sticking with a pauci diagnosis for Owen for now? My impression of pauciarticular was that it was 5 or fewer joints, almost always the larger ones (knees, hips, etc) Usually when feet and fingers get involved, the diagnosis becomes poly... just the number of joints. I hope things improve for Owen. Good luck. -- LynnMom to: Mickey (9), systemic jra since 3Kinsey(7), wonderful sister to Mickey From: <jt102493@...>Reply- Date: Fri, 02 Jan 2004 13:12:22 -0500 (Eastern Standard Time) Subject: RE: Possible arthritisMy son also has never had fevers, it started in only his hip and then moved on to his feet and back. After that it went to his fingers as well. At this point they have diagnosed him with pauciarticular but I get the feeling that they are waiting to see a psoriatic flare to diagnose him with juvenile psoriatic arthritis. He presents (minus psoriatic rash) text book for it. Apparently it can take up to ten years for psoriasis to show up after the RA symptoms.I hope you find answers for your daughter soon. It's hard to watch a child so young in pain, isn't it? Owen's problems started very young. One of the first words he ever said were, "Mommy, hurts" pointing to his feet. It's hard on the soul, can be very draining, and my children don't even remotely have the serious symptoms and problems that other courageous people on this list have been through. Good luck.

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[Guest guest]

HI JENNY THEY HAVE MENTIONED AVASCULAR NECROSIS WHEN IT COMES TO MY SONS HIP BUT EVEN WITH ALL THE MRIS AND CATSCANS DON'T SEEM TO KNOW IF IT IS THIS OR NOT. WHAT DID THEY DO FOR YOUR CHILDS AVASCULAR NECROSIS? JUST CURIOUS ? THANKS jANE

[Guest guest]

Hi :

Thanks for the answers... and I am so sorry to hear of all your worries with Owen and Liam. It's been a while since Mickey was that ill, but I well remember the years before and after she was diagnosed. Sick all the time, high fevers, rashes, often unable to walk. I won't go into all the grief and anger I was feeling at our family doctor's lack of adequate response to our worries, and even the two pediatricians who I finally got referred to... " kids get unexplained fevers, don't worry so much " and " she acting out to get attention because you're pregnant with another baby and she's feeling threatened " . I still feel like slugging the smug, arrogant assholes (pardon me) over their patronizing lack of response and totally inadequate doctoring. Anyway, many years, drugs and tribulations later, her symptoms are mostly under control and we don't have nearly so many bad days. It certainly makes a difference even just to know what it is you're dealing with.

I really hope they find out what is causing Liam so much trouble and get it under control, and Owen too. It is so hard to see your children ill like that.

--

Lynn

Mom to:

Mickey (9), systemic jra since 3

Kinsey(7), wonderful sister to Mickey

From: <jt102493@...>

Reply-

Date: Sat, 03 Jan 2004 23:47:37 -0500 (Eastern Standard Time)

Subject: Re: Question re: psoriatic arthritis

Hi Lynn! I'll tell you what I know with the caveat that it's coming from me, definitely not as educated as many others on this site, and you can take what you can. Owen (2 at the time) originally had an avascular necrosis in his left hip. They called it Legge-Calve-Perthes disease. Eventually his feet started to swell. They called it pauciarticular arthritis. When his fingers started to swell, they started talking about polyarticular arthritis. When his back started to ache, they started talking about psoriasis as a factor. In order to diagnosis him with it, though, they need to see a psoriasis rash. I have 9 brothers and sisters, we all have psoriasis (none of us have obvious arthritis, though, although I imagine it could have been missed in our large family) My understanding from my doctor is that it presents first as pauci, then poly, then JAS. Eventually a flare-up of psoriasis appears. My 7 year old year old Liam is tentatively being diagnosed with juvenile ankylosing spondylitis. Honestly, this little boy has been so sick I have a hard time believing that they know what is going on. In the past two weeks, he's had an arrhythmia in his heart due to (supposedly) a costochondritis, even though it's lasted two weeks. His lymph nodes are so swollen he has taken to holding his neck when he walks around, which isn't much these days, and he's on 60mg of Prednisone (the highest I've even heard of) with no effect whatsoever to his neck pain.

So, there you have it, my limited information on this. Enjoy your farm!

-- RE: Possible arthritis

My son also has never had fevers, it started in only his hip and then moved on to his feet and back. After that it went to his finger s as well. At this point they have diagnosed him with pauciarticular but I get the feeling that they are waiting to see a psoriatic flare to diagnose him with juvenile psoriatic arthritis. He presents (minus psoriatic rash) text book for it. Apparently it can take up to ten years for psoriasis to show up after the RA symptoms.

I hope you find answers for your daughter soon. It's hard to watch a child so young in pain, isn't it? Owen's problems started very young. One of the first words he ever said were, " Mommy, hurts " pointing to his feet. It's hard on the soul, can be very draining, and my children don't even remotely have the serious symptoms and problems that other courageous people on this list have been through.

Good luck.

____________________________________________________

IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Jane,

An avascular necrosis (bone death, degeneration of the bone) in the epiphysis of the femoral head (the ball that goes in the socket) is obvious on a simple x-ray. This is what Owen has. If it's anywhere else I don't know but I do know that for this specific problem they are waiting to see what happens when it grows back. If it is in the epiphysis of the bone (the growth part of our bones) then the chances are that once the cause (cutting off of blood supply) is removed, the bone will grow back. Then their are a multitude of different scenarios depending on age, how much bone involvement, etc.

If you let me know more specifically about what they said about your son, I can be more specific about the prognosis, treatment options, and generally more about it. It just so happens this in one thing I know something about!

-- Re: Question re: psoriatic arthritis

HI JENNY THEY HAVE MENTIONED AVASCULAR NECROSIS WHEN IT COMES TO MY SONS HIP BUT EVEN WITH ALL THE MRIS AND CATSCANS DON'T SEEM TO KNOW IF IT IS THIS OR NOT. WHAT DID THEY DO FOR YOUR CHILDS AVASCULAR NECROSIS? JUST CURIOUS ? THANKS jANE