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Old 06-17-2009, 07:12 PM   #1
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2 yo daughter with Psoriatic arthritis

My beautiful sweet daughter was recently diagnosed with probably Psoriatic Arthritis. She is only 2! I am very worried. I've read so many posts by adults living with this disease and it sounds awful. At this time my daughter's disease is mild but after everything I've read I'm coming to realize her future isn't looking great.

Initially we were told she had oligoarticular JIA. The prognosis is much better for those children. However, my daughter has dactilytis of 2 toes (sausage toes), therefore, it is more likely that she has Psoriatic even though presently she has no evidence of Psoriasis.

Anyway, I'm looking for adult childhood sufferers of this disease that can give me some insight. I'm wondering if there is any chance that her course may be mild or is she doomed? The doctor hasn't given us much information about it. He just keeps saying that he prefers to be optimistic.

This doesn't seem to be very common in kids so I'm having trouble finding people that have had it since childhood.

Thanks, Cat

 
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Old 06-18-2009, 06:31 AM   #2
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Re: 2 yo daughter with Psoriatic arthritis

Hello Cat,

Oh my goodness, your poor little daughter! I have never heard of someone so young having Psoriatic Arthritis. I am 51 and have had PsA for 5 years now. I have been on all the usual dmards (disease modifying drugs) and about to embark on the Anti Tnf drugs. What do they intend to give your little girl? Do you think she will grow out of it in adulthood? What hurts her the most? My joints all ache at certain times, i.e. today its my wrists, toes, fingers and ankles, another day it could be knees, ankles toes, elbows etc. I had Psoriassis 5 years ago after a family crisis, and have never had skin problems since. It went straight to my joints and was diagnosed with psoriatic arthritis because of my pain and my bent fingers at the top and my sausage toes. If there is anything I can help you with please ask. I hope your daughter has the disease very mild and it stays that way for her, keep positive. Ronnie x

 
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Old 06-21-2009, 10:56 PM   #3
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Re: 2 yo daughter with Psoriatic arthritis

Quote:
Originally Posted by soulangeana View Post
My beautiful sweet daughter was recently diagnosed with probably Psoriatic Arthritis. She is only 2! I am very worried. I've read so many posts by adults living with this disease and it sounds awful. At this time my daughter's disease is mild but after everything I've read I'm coming to realize her future isn't looking great.

Initially we were told she had oligoarticular JIA. The prognosis is much better for those children. However, my daughter has dactilytis of 2 toes (sausage toes), therefore, it is more likely that she has Psoriatic even though presently she has no evidence of Psoriasis.

Anyway, I'm looking for adult childhood sufferers of this disease that can give me some insight. I'm wondering if there is any chance that her course may be mild or is she doomed? The doctor hasn't given us much information about it. He just keeps saying that he prefers to be optimistic.

This doesn't seem to be very common in kids so I'm having trouble finding people that have had it since childhood.

Thanks, Cat
What were her symptoms?? My 2yo has these reddish/whiteish scaly patches on her legs and occasionally her chest that will NOT go away. The Pedi told me to use cortisone cream which helps a little but they always come back.

I don't know if its allergy related or something else. Some auto immune runs in the family and it kind of freaks me out!

Was your DD in pain at all?

 
Old 07-06-2009, 07:18 AM   #4
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Re: 2 yo daughter with Psoriatic arthritis

My daughter actually has not been diagnosed with Psoriasis yet but I think she may have had a flare of psoriasis that went away before any doctor saw it. Around the same time that her toes swelled she kept complaining of her elbows hurting. They turned bright pink/reddish and looked dry. I just thought it was a bad case of dry skin and treated it as such. At that time I didn't notice the swollen toes. It was after looking back at photos taken of her that I noticed the swelling was present sooner than we thought. Heck, now looking back I remember when she was only 1 she would complain that her foot was hurting every once in a while. Again I thought it was something else and put ice on it. I had no idea that children could even have arthritis.

A lot of people develop the arthritis before the skin condition though most people develop Psoriasis first.

As for her pain, at this time we have a pretty good handle on it with Naproxen and Methotrexate, but she doesn't use her knee as she should. Consequently she is to start physical therapy as soon as they can get her in.

I have no idea what her future holds because there seems to be little research on pediatric PsA. It's much less common than the more typical juvenile arthritis types. She currently has less than 5 joints affected but from what I've read with children the severity at onset doesn't seem to mean much. I'm hoping it never gets worse, but I'm very afraid it will.

I've had a lot of depression and anxiety over this. I have obsessively researched the disease online but have not found the answers I'm looking for. I want to know what her prognosis is. The doctor doesn't seem to know. I can't imagine her living life battling pain daily. I feel like it isn't fair.

I'm trying to remember that things can be worse. There are much worse diseases/conditions out there and she is doing well at this time.

Sorry it's taken me so long to reply. I couldn't remember what board I had signed up at.
Cat

 
Old 07-06-2009, 07:37 AM   #5
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Re: 2 yo daughter with Psoriatic arthritis

Thanks Ronnie. I'm hoping the Methotrexate will be enough for her but I'm pretty sure she will be on a biologic eventually. Of course this makes me extremely nervous.

I'm wondering if my husband has some sort of undiagnosed arthritis. He has aches and pains all the time too......back, ankle, thumb, shoulder......No swelling yet though and no diagnosed psoriasis but he definitely has some skin issues.

Most of my daughter's pain at this time is in her knee areas. Luckily the medication has brought her pain down considerably and her stiffness has almost vanished. I have high hopes that there is a cure or at least a much safer and effective medication on the horizon, hopefully before she reaches adulthood.

Last edited by soulangeana; 07-06-2009 at 07:39 AM.

 
Old 07-06-2009, 02:28 PM   #6
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Re: 2 yo daughter with Psoriatic arthritis

Hi, I was diagnosed with JIRA, juvi idiopathic rheumatoid arthritis when i was 18 months old. Although this is a different type than your daughter maybe i can give you some advice anyway.
My parents tell me i spent a lot of my early childhood in pain, in hospital, taking adult doses of painkillers- I DON'T REMEMBER THIS.
I remember getting chocolate at the hospital-my dad tells me this was when i was having blood taken, again i don't link any pain with that memory.
My only memory of my many stays in hospital is of a toy catapillar, finger puppets and donald duck rubber rings-no pain, no sadness.
My dad would take me out for food after hospital trips, my mum dyed my bandages pink, i took my medication in hot chocolate. These are really the only things i remember from being ill when i was really little.
I was surrounded by a very possative family and that helped a lot. I never missed out because i had arthritis- when i was ten my class went skiing with the school, i couldn't ski but i was made official photographer to record the trip. Your daughter may not be able to take part fully in everything "healthy" children do but there is always a compramise.
What i am trying to say that even with what your little girl is going through she will have a happy childhood if you help her. You are already doing the right things, finding all the answers you can. Doctors are great but if you don't fit into one of their neat little lables they can be slow to adapt. Find out what works well for adult sufferers and how you can adapt for your girl.
Also don't be afraid to listen to your heart-you know her best.

I don't know if I have been any help, best of luck with the future and stay possative

Thistle

 
Old 07-07-2009, 02:26 PM   #7
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Re: 2 yo daughter with Psoriatic arthritis

Thiste,

What a lovely message!

Ronnie

 
Old 07-10-2009, 03:37 PM   #8
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Re: 2 yo daughter with Psoriatic arthritis

Quote:
Originally Posted by soulangeana View Post
My daughter actually has not been diagnosed with Psoriasis yet but I think she may have had a flare of psoriasis that went away before any doctor saw it. Around the same time that her toes swelled she kept complaining of her elbows hurting. They turned bright pink/reddish and looked dry. I just thought it was a bad case of dry skin and treated it as such. At that time I didn't notice the swollen toes. It was after looking back at photos taken of her that I noticed the swelling was present sooner than we thought. Heck, now looking back I remember when she was only 1 she would complain that her foot was hurting every once in a while. Again I thought it was something else and put ice on it. I had no idea that children could even have arthritis.

A lot of people develop the arthritis before the skin condition though most people develop Psoriasis first.

As for her pain, at this time we have a pretty good handle on it with Naproxen and Methotrexate, but she doesn't use her knee as she should. Consequently she is to start physical therapy as soon as they can get her in.

I have no idea what her future holds because there seems to be little research on pediatric PsA. It's much less common than the more typical juvenile arthritis types. She currently has less than 5 joints affected but from what I've read with children the severity at onset doesn't seem to mean much. I'm hoping it never gets worse, but I'm very afraid it will.

I've had a lot of depression and anxiety over this. I have obsessively researched the disease online but have not found the answers I'm looking for. I want to know what her prognosis is. The doctor doesn't seem to know. I can't imagine her living life battling pain daily. I feel like it isn't fair.

I'm trying to remember that things can be worse. There are much worse diseases/conditions out there and she is doing well at this time.

Sorry it's taken me so long to reply. I couldn't remember what board I had signed up at.
Cat
Hi and thanks for the reply. I'm so glad she is doing well and I HOPE it does not progress!!!

My little one has had this strange, scaly-sometimes round, bumpy rash on her legs from about 6 months. It migrates to her torso & chest on occasion. This week is is ALL over her upper chest, on her legs and near her belly button. It has been there so long on her legs that they will not tan like the rest of her skin, that area stays white.

She has complained that her feet hurt once or twice, I thought it was her new shoes. So I don't know, hopefully it's ezcema.

I hope everything goes smoothly for you guys.

....and Thistlegirl your post was awesome!!!!

Last edited by Vuitton70; 07-10-2009 at 03:38 PM.

 
Old 07-13-2009, 05:00 PM   #9
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soulangeana HB User
Re: 2 yo daughter with Psoriatic arthritis

Quote:
Originally Posted by thistlegirl View Post
Hi, I was diagnosed with JIRA, juvi idiopathic rheumatoid arthritis when i was 18 months old. Although this is a different type than your daughter maybe i can give you some advice anyway.
My parents tell me i spent a lot of my early childhood in pain, in hospital, taking adult doses of painkillers- I DON'T REMEMBER THIS.
I remember getting chocolate at the hospital-my dad tells me this was when i was having blood taken, again i don't link any pain with that memory.
My only memory of my many stays in hospital is of a toy catapillar, finger puppets and donald duck rubber rings-no pain, no sadness.
My dad would take me out for food after hospital trips, my mum dyed my bandages pink, i took my medication in hot chocolate. These are really the only things i remember from being ill when i was really little.
I was surrounded by a very possative family and that helped a lot. I never missed out because i had arthritis- when i was ten my class went skiing with the school, i couldn't ski but i was made official photographer to record the trip. Your daughter may not be able to take part fully in everything "healthy" children do but there is always a compramise.
What i am trying to say that even with what your little girl is going through she will have a happy childhood if you help her. You are already doing the right things, finding all the answers you can. Doctors are great but if you don't fit into one of their neat little lables they can be slow to adapt. Find out what works well for adult sufferers and how you can adapt for your girl.
Also don't be afraid to listen to your heart-you know her best.

I don't know if I have been any help, best of luck with the future and stay possative

Thistle
Thank you so much for your encouragement. I've been looking for more adults that have had arthritis since childhood so I can see how it has affected their lives. This ordeal has been very distressing for us and it takes quite an effort to remain positive. Encouragement from others in the same or similar situation really helps.

 
Old 07-16-2009, 03:47 PM   #10
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Re: 2 yo daughter with Psoriatic arthritis

Hi everyone, thanks for your comments.
I was so touched by your original post Soulangeana because you sounded so worried for your girl. It is a very tough thing that your family is going through, yes some people are going through worse but that doesn't really make it any easier for you.

You wanted to know about growing up with arthur (as i like to call my JIRA), i can tell you how i did it, again lots of little points that you can take or leave, most of these are not from my point of view as i don't remember them. Sorry it is such a long post but i have 30 years to talk about.

I guess i was tired a lot. I used to fall asleep at the dinner table a lot, my sisters told me recently that that they would see me dozing but not tell my parents until i landed face first in my pasta. I was the dinner time entertainment.

I remember Primary school being pretty normal, i would have some extra days off for the hospital appointments. Arthur was active in my knees mainly.Sometimes i wasn't able to go out a breaktime, but i would stay inside with some of my friends instead- this was great in Scottish weather as it rains a lot.
My main arthur memory from this time was being banned from playing football(soccer). I was a tomboy, i couldn't run but i thought being in goal was a good compramise. This is my earliest memory of Arthur stopping me from doing what i wanted, i was 10 years old and thought i knew better, the docor had to sit me down and tell me all the things that arthur could do to me. This was the first time that i remember being told the bad parts.

I high school i had a major flare up, Arthur decided to try out pretty much every joint in my body.
My attendence was very mixed, one year i was at 60%. Again there was compramise.
I dropped P.E. as the only sport i was allowed to do was swimming- I took an extra art class instead, my favourite lesson.
I was allowed extensions for assignments, i rarely abused this. Please remember i was a teenager and any abuse of this i blame on puberty.
I wasn't able to go out at the weekends as much as my friends, and most of my meds did not mix well with alcohol, so underage drinking never happened. My parents liked this part!
I gained some good grades at school, i do think that they would have been better if a was fully healthy, but i got enough to go to university.

At University i trained to be a teacher, i had to sit out a semester because of Arthur but i made up the time and graduated a few months later than the rest of my class.

I now teach high school students and i love it. The school where i work has been great. I again need time off for appointments, but i plan my lessons around it. When i have a bad patch we work things out.
I have less energy than other people, i live for the school holidays to recharge myself but until i win the lottery i can't see myself doing any other job.

I am now 30 years old and Arthur has been around pretty much all of my life, every 5 years or so i would have a few months off for good behaviour before he would flare up again. I think that in some ways it has been easier as i have only known a life with Arthur. Sometimes i will get a comment along the lines of "oh, i don't know how you cope, i couldn't cope if i was in your shoes." For starters pity is REALLY not helpful, but my main point is that this is me, my body has always felt like this, i don't really know what 'healthy' feels like.
A lot of days i feel really great, i am still taking painkillers and other meds but in my reality i feel great, i am able to go to work, see my friends and look after my house. When i do feel bad i have great family and friends that will help me with anything from taking me to the hospital in the middle of the night, to bringing over a movie and food when a can't make it out and i am going crazy.

I have worked my way through most of the meds around, i am now on methatrexate, infliximab and painkillers. This mix seems to be working well and I am living a pretty good life, it isn't perfect but who's is? I still have chocolate when i go to the hospital, i am addicted to hot chocolate and my handbag sometimes rattles with tablets.

One of the most annoying things about Arthur is that you and your doctors don't know what he is going to to next. Nobody can tell you how your daughter is going to be in a couple of years and you could drive yourself mad looking for answers. I famously said when i was 5 that "Doctors know nothing!" Sometimes it still feels like that but most times they help.

Take one day at a time, one problem at a time, don't looks for a cure, look for a solution. Also beware searching a disease online, you will see the worse case senarios, and they freak me out.
I have rambled on enough, again i don't know if there is anything in there to help. Please remember that although you grow up with arthur it is not who you are, it is only one small part of your daughter and never let it take over. Your daughter is not the girl with Arthritis, she is the girl who likes pink, likes to play on the swings and hates peas.(just a guess)

I hope that you are all doing well at the moment, thanks for taking to time to read a really long post. Get in touch if you want anything- even if it is just to scream at the world.

Thistle.

 
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