Re: Re: JRA from psoriasis

[Guest guest]

,

My daughter's father complained that I took her to the doctor too much. He said

she was fine and to not worry about her. He would get mad because of the medical

bills. He was angry when I took her to the neurologist and she was diagnosed

with a seizure disorder. He thought the arthritis diagnosis was bogus as well.

Needless to say his complaints were not too nice when she struggled with her

asthma. At age one when she was in the hospital totally lethargic for over 24

hours, I thought she was going to die cause they had no clue what was wrong, he

also thought it was rediculous. I think he just said let her sleep and

eventually she will wake up. Her father is not a total 100% jerk but he is

close. I only share this to say. Follow your instincts. A mothers intuition

knows much more then other people and that intuition is what will help your

daughter for years to come. She needs you and some men just do not have the

insight to a childs needs. I will pray that your husband will be very

supportive of you as you seek the medical attention your daughter needs. Kids

need their parents to understand them and listen to them and believe them. I do

not think you are just looking for things to be wrong, I think you are being

attentive to her needs and staying on top of things. You do not want to wait

til it is too late to stop damage if you have the opportunity to get ahead of

the game.

Veri & Jaye 16 poly and several other issues but doing well

Re: JRA from psoriasis

Thanks ,

I will. I have a sneeky suspition that she didn't really believe the pain she

was having. When she checked the joints she said that she didn't feel anything.

I guess it is a wait and watch. But I would like to keep speaking with you all

in case there comes a time when I need your expertise opinion.

I believe too that my husband doesn't think that it is a problem because he told

me after the visit that I shouldn't keep looking for things to be wrong with

her. Her other syndromes are going to cause her to go into menopause early and

the fact that both diseases can bring on osteoperosis early (in her 20's to

30's) was enough for me to have her seen early. I guess watching her closely is

the best I can do for her right now.......

Thanks all,

> >

> > Hey All,

> >

> > I was wondering about how many here have kids that has JRA/JIA due to

psoriasis. My daughter's psoriasis is under 5%. Her nails are a mess. I took her

to a ped rheumy when I saw what the nails can mean. She took x-rays of her hands

but said there is no sign of problems as yet.

> >

> > She complains of pains in her hands and ankles a lot. There are times when

she cries her hands hurt so bad. She is afraid to tell her teachers when she

hurts so she waits until she gets home and can't take it anymore.

> >

> > I know that there is nothing else I can do right now until she really shows

signs that can be seen by the rheumy. I just wondered when things started to get

seen between the psoriasis and the arthritis.

> >

> > maria

> >

>

[Guest guest]

Ah, yes, a mother's instinct! Amazing isn't it, how we often just know something

is not quite right with our children. As Veri said, trust yourself. You know

your child and you are her only advocate because she cannot speak for herself.

Something to think about - my son's first rheumy said it was not ok for a child

to be in pain. If they are having pain, something is going on and we have to

take care of that. Please keep on trying to get answers for your daughter, you

never were a " dumb new mother " . Please feel free to ask any questions here,

someone will surely be able to help answer them. Hugs, Michele ( 22,

spondy)

________________________________

From: [mailto: ] On Behalf Of

Sent: Wednesday, March 24, 2010 3:32 PM

Subject: Re: JRA from psoriasis

Thank you Veri,

I am just so worn out at trying to get him to understand " her " . Things she does

and says that is not typical he swears is a typical kid. I love her and surely

would not want for something to be wrong with her, but I feel it like I felt

their was something wrong with her older sister when she was an infant. If I

hadn't gone ahead and mentioned her skin color to her ped (who did not see it

until I showed him) she would be gone. There were signs that she was showing me,

but I was just a dumb new mother and it was normal for her to cry like she did,

that I was spoiling her when I held her, that this was the only time that she

would sleep is when she was being held. Even my mother tried to make me believe

I was acting stupidly and that it wasn't as hard dealing with her as I made out.

Then we found out at that appointment that her RBC was at 4 when it should have

been 12 to 15. Three days later we were in a medical center getting transfusions

and bone marrow biopsies for her, looking for leukemia and all kinds of weird

blood conditions. Never did I ever get an aplogy from her, or from my husband

for that matter. The only thing that my mother ever said was " we didn't know she

was a sick as she was " , but I did....

> > >

> > > Hey All,

> > >

> > > I was wondering about how many here have kids that has JRA/JIA due to

psoriasis. My daughter's psoriasis is under 5%. Her nails are a mess. I took her

to a ped rheumy when I saw what the nails can mean. She took x-rays of her hands

but said there is no sign of problems as yet.

> > >

> > > She complains of pains in her hands and ankles a lot. There are times when

she cries her hands hurt so bad. She is afraid to tell her teachers when she

hurts so she waits until she gets home and can't take it anymore.

> > >

> > > I know that there is nothing else I can do right now until she really

shows signs that can be seen by the rheumy. I just wondered when things started

to get seen between the psoriasis and the arthritis.

> > >

> > > maria

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

My son doesn't have it in his toes, but he does have it in his fingers. They

get swollen and stretched over, looking a lot like sausages. Like the

sausage casings stretched over the meat.

This link might help you. I couldn't find any photos, but there might be

some with a little digging.

http://psoriasis.org/netcommunity/psoriatic_arthritis

On Wed, May 5, 2010 at 12:28 PM, <mariamaul08@...> wrote:

>

>

>

> Hi All,

> I am back again. This time I have a quesstion about what sausage digit

> looks like in toes. She hasn't complained of any pain but she noticed that

> the big toe on her right foot looks smaller than the big toe on her left

> foot. The big toe actually looks shorter than the toe next to it. It is not

> red or hot it just looks shorter and stubbier than her other big toe.

>

> I know that this may sound trival compared to what your kids are going

> through right now. Forgive me, I am concerned that this is the start of

> arthritis and I am not sure what it is supposed to look like.

>

> Thanks,

>

>

>

>

> > > > >

> > > > > Hey All,

> > > > >

> > > > > I was wondering about how many here have kids that has JRA/JIA due

> to psoriasis. My daughter's psoriasis is under 5%. Her nails are a mess. I

> took her to a ped rheumy when I saw what the nails can mean. She took x-rays

> of her hands but said there is no sign of problems as yet.

> > > > >

> > > > > She complains of pains in her hands and ankles a lot. There are

> times when she cries her hands hurt so bad. She is afraid to tell her

> teachers when she hurts so she waits until she gets home and can't take it

> anymore.

> > > > >

> > > > > I know that there is nothing else I can do right now until she

> really shows signs that can be seen by the rheumy. I just wondered when

> things started to get seen between the psoriasis and the arthritis.

> > > > >

> > > > > maria

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Two swollen toes were our first sign of arthritis in my son. He was 11 months

old at the time. The psoriasis three years after that. As far as appearance, the

toes were just really fat. From there, it took us many doctors to finally get a

diagnosis of jra. Other joints followed the toes but the toes alone didn't

respond to the medication. He finally got steroid shots in the toes last year

and that has seemed to help.Abbie (nie, 6, psoriatic)

From: <mariamaul08@...>

Subject: Re: JRA from psoriasis

Date: Wednesday, May 5, 2010, 9:28 AM

 

Hi All,

I am back again. This time I have a quesstion about what sausage digit looks

like in toes. She hasn't complained of any pain but she noticed that the big toe

on her right foot looks smaller than the big toe on her left foot. The big toe

actually looks shorter than the toe next to it. It is not red or hot it just

looks shorter and stubbier than her other big toe.

I know that this may sound trival compared to what your kids are going through

right now. Forgive me, I am concerned that this is the start of arthritis and I

am not sure what it is supposed to look like.

Thanks,

> > > >

> > > > Hey All,

> > > >

> > > > I was wondering about how many here have kids that has JRA/JIA due to

psoriasis. My daughter's psoriasis is under 5%. Her nails are a mess. I took her

to a ped rheumy when I saw what the nails can mean. She took x-rays of her hands

but said there is no sign of problems as yet.

> > > >

> > > > She complains of pains in her hands and ankles a lot. There are times

when she cries her hands hurt so bad. She is afraid to tell her teachers when

she hurts so she waits until she gets home and can't take it anymore.

> > > >

> > > > I know that there is nothing else I can do right now until she really

shows signs that can be seen by the rheumy. I just wondered when things started

to get seen between the psoriasis and the arthritis.

> > > >

> > > > maria

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >