Re: New and a child w/PA

[Guest guest]

Hi . I am a lurker on this list but all 3 of my kids have " issues " ... the

oldest (almost 11) has an official label of PA. She started off as having

thickening and grooves in her toe nails and pits in her finger nails. I just

figured it was nothing to worry about. Then a few months after that she started

getting pains in her feet, especially if she bumped one during recess at school

or something like that. X-rays would come back normal even though she would cry

out in pain. A few months later she ended up with a swollen pinky toe on one

foot. X-rays and then MRI's later they told us she had an infection in the bone

and were next to ready to remove the bone totally. Thank God I would not allow

that unless they could prove to me they were 100% sure. So after NOT believing

them we ended up seeing a rheumy and she confirmed PA. The P just being in the

nails. So she was put on meds and eventually the pain left and most of the

swelling went away, although the toe is still larger then the same one on the

other foot years later. She often gets migraines and pains in joints and her

back. Times she is in so much ankle pain even with meds that she refuses to

walk. I now home school her and her 6 y.o. brother. My son's issues are pain

from being double jointed. He is so used to being able to bend w/o thinking

about it that at times I suppose it catches up with him and then he needs his

meds. Then there is my almost 3 y.o. daughter. She always screamed (and I mean

horribly) when the sun would get into her eyes. She still does now. The eye doc

says nothing is wrong. I don't believe him. She is always tired, even after

sleeping a full night 12 hours, wakes up and is ready for a nap within a half

hour. The doc will not confirm anything for me. About a year ago she ended up

getting a weird hives looking rash that would turn into swelling that turned

into red areas that then turned into black and blues looking.

It covered her entire body and she was not able to bend her fingers or walk

from being so swollen. She looked like a bruised puffy marshmallow. And all she

could do was cry from being in so much pain. After taking blood they said she

had some type of swelling in her body (no duh!) but could not tell me why. All 3

kids have had the special exams done on the eyes. My oldest had it many time now

already. She also has something called optic nerve head drusen which I read will

eventually blind her although the doc for that said he rarely see anyone like

that. Who knows. But yes both daughters get tired easily. All 3 kids take

taekwondo (a form of karate) to keep from getting stiffened up and at times we

take breaks during flares. My mom's side of the family had arthritis issues. My

mom has Rheum. Arthritis and Sjogren's Syndrome as well. I am noticing a lot of

cracking and pains with myself as well as very dry eyes. Perhaps I am following

my mom's path. And

all 3 kids crack like it's going out of style. Of course I am no doctor but

what you describe to me, it sounds like you are on the right path with you

daughter in figuring it out on your own. Trust your instincts. Mother knows

better that anyone when things are not right. Good luck and best wishes in your

journey to an official label. I hope I helped at least a little. It helped me to

at least know we were not the only family out there trying to find answers and

after getting some answers to not be the only ones with this label. Well that is

that and sorry it's so long!

Jen from Penn... mom to...

Grace- almost 11- PA

- 6- Hypermobile

- almost 3- nobody wants to tell me

-

[Guest guest]

Hi!

That is definitely P in her nails. I have it really bad in my nails and that

sounds like mine. I got P at the age of 5. No one knew what it was forever. Then

at about age 10-12 I started having horrible problems with my jaws, no one would

listen to me. It got to where I couldn't even chew a lot of things. It affected

my growth in my jaw and to this day it is too small and I can't open it big

enough for the dentist or doc. Then I had probs with my knees on and off and

shoulders. I was the kid that couldn't sit cross legged at school for very long

or do the stretches. No one ever diagnosed me with PA. I felt like I was pretty

much ignored and not believed by my doctor and parents.

Finally at the age of 28 I found a good rheumy but it was a little late for me.

I have permanent damage in my neck, two of my neck vertebrae have fused

together, I have a few crooked fingers and at 29 I had to get my hip replaced.

My point in rambling on about this be proactive for your daughter and go to

different doctors until someone helps her. This disease is very fast acting and

permanent damage comes quickly. Don't let that happen to her.

Good luck,

[Guest guest]

Thank you Jen,

You are the first person on any site that has talked to me one parent to

another. I have read all the info on sites that I can find and I just wanted to

here how other parents figured it out.

I am so sorry to hear that your kids are having such problems. I can't imagine

the head banging you must be doing after all the talks with doctors not

listening. I just got put out in left field to figure out symptoms on my own.

How do they find the problems with the eyes? My daughter has had pain to the

sunlight since she was a baby. She comes home with headaches from school alot

and I am wondering if that isn't from the lighting at the school. She has some

other medical conditions which I think is going to make meds harder to do. I

feel bad for her because she may have been in pain everyday since she was little

and she just thought it was what was supposed to happen.

I thought of home-schooling her for the rest of this year because she has missed

a lot of school already. Nobody could ever tell me why she had headaches. When

she was two, I would pick her up from daycare and she said her head hurt almost

everyday. Now I am thinking that this was probably from her playing outside.

Did I see right? Does it say you are in Pennsylvania? I am in WV. She goes to

Pittsburgh Childrens tomorrow. I can't remember the name of the doc that she is

to see, I think that the woman on the phone said she was a fellows, but could

still help her. I will let you know what they tell me. I am so glad that I have

a parent or two that can tell me that I am not crazy and yea that sounds like

it. I know only the doctor can tell me for sure but it is nice to hear.

Thanks EVERYONE!

[Guest guest]

Ask your doctor if you can start your daughter on fish oil supplements and ask

himhowmuch you can give her. You have to be careful with too much a,c,d,and e

vitamins but basically it is safe . just to be sure ask your pediatrician . This

will help her . It takes a while for fish oil to work but it will help her in

many ways .

cathy from ma

[Guest guest]

I'm not a parent of a child with the disease but given the " runaround " some of

your docs have given you, I would try to find a pediatric rheumatologist if you

live in a large enough metropolitan area for there to be one. I'm in suburban

Chicago and know there's one in our County. It certainly sounds as though your

daughter has PA and she needs help as quickly as she can get it before serious

damage occurs.

Joanna Hoelscher

[Guest guest]

The first sign I had anything going on was in 1993, I developed iritis in my

eyes. Years later when I was diagnosed in 2008 after the pain started getting

severe the first thing the rheumatologist asked me was if I had ever had eye

problems.

Celeste

[Guest guest]

Hi All,

Well, amazingly enough the doc says that she doesn't think that she has PA. I

still say that she might. She took X-rays of her hands so that she could check

for any signs of bone loss. I also wanted her to check the the index finger that

seems to be turning into the middle finger at the tip. She gave us a script for

naprosin and told me to use it on her for a couple of weeks. The aches she has

may be from her other conditions. If it doesn't help then we are to stop as it

can cause stomach problems.

If she is to have any swelling of any kind then I am to get pics and send them

to her. We see her back again in about 3 months or so.

She and her father are to see an opthamologist for sensitivity to light. That

she was insistent on.

Hopefully this won't turn out to be any worse than it is now. I have been on top

of her psoriasis so that it doesn't get worse and doesn't cause her

embarrassment. Only time will tell. Thank you all, if you can think of anything

else please give me all the info you have.

>

> The first sign I had anything going on was in 1993, I developed iritis in my

eyes. Years later when I was diagnosed in 2008 after the pain started getting

severe the first thing the rheumatologist asked me was if I had ever had eye

problems.

>

> Celeste

>

[Guest guest]

It sounds like the doc is looking for JRA.  My doc was always frustrated by my

diffuse swelling which is a difference between us and rheumatoid.  Their

swelling is very much localized in the joint and docs like to aspirate fluid

from them.  Ours is diffuse - puffy all around the joint.  Frustrated the doc no

end he never could aspirate any of my joints.  The naprosyn is an NSAID which

should help with any inflammatory arthritis. 

Janette

[Guest guest]

Janette,

May I ask why you suggest that? It seems I may be missing some things here. I

was so sure that it was PA.

[Guest guest]

I'm betting you're right but doctors don't like making a PsA diagnosis. Swollen

joints are not a good indication for PsA because we have diffuse swelling. They

are a good indicator for rheumatoid because that swelling is all in the joint.

Doctors are more familiar and more comfortable with rheumatoid. PsA is very hard

to diagnose and that's why it takes so long to get a diagnosis. One test for

inflammation that worked for me is called a bone scan. Mine indicated

inflammation in all the joints I'd told the doctor were giving me pain even

though he couldn't see the swelling. Are her fingers sausage digits (looking

just like it sounds)? That's a good PsA indicator.

I have a distant cousin with this disease who was diagnosed as non-rheumatoid

factor rheumatoid. In a way she's got it better than I do because rheumatoid is

a more common diagnosis and has more approved meds. All our meds were developed

for rheumatoid first. Then they have to go through extra trials before they're

approved for us. I'd like to try Kineret but that's only approved for

rheumatoid so my insurance won't cover it. My cousin can get it. If you're

offered a jRA diagnosis I'd say go for it - you get all the meds PsA patients

have plus a lot more.

Another possibility: Many spondys get their original diagnosis from an

ophthalmologist because they have iritis. Maybe that appointment will lead the

rheumy to give you a diagnosis of inflammatory arthritis. If the naprosyn

provides relief it's a good sign there's inflammation because it is an

anti-inflammatory. You need to get the inflammation under control or damage gets

done but it won't show up on x-rays until years after the damage is done. You

want to stop it with meds now.

Good luck, keep searching,

Janette

[Guest guest]

Thank you Janette,

When I saw it in her fingers at it's worst was when I was clipping her

finger nails and cutting out the psoriasis under them. One finger looked swollen

from the middle knuckle to the tip of her finger. It was red and did feel a

little warm. The thing about most of her pains, she has that high tolerance. I

know this from when she was little. She could have a fever of 102 and be

playing, she had an ear infection once that almost burst her eardrum. I ask her

questions last week before the visit, but I didn't want to go too far as to feel

like I am proading things out of her that may not be there. I asked her if she

had any pains at school and she told me that it did hurt her fingers sometimes

to write with her pencil. She also said (and I may have already posted) that

when they sit at circle time or do things on the floor, she has to sit on the

floor with her legs straight out.

Her finger that is turning is not on the hand that she writes with. That is what

worried me too. The fact that she has Syndrome is what makes the joint

things hard to see unless you know what her fingers look like all the time.

There is a chunky look to her fingers and the joints obviously look larger than

normal. Maybe she is looking for RA, and maybe that could be more so than the PA

even though she may have both. I don't want to go there yet. I am confused as it

is.

[Guest guest]

I was talking to my daughter about yours and said the Juvenile Idiopathic

Arthritis (JIA) diagnosis was a new one for me.  She is a grad student working

daily in a lab full of rheumatologists.  She said my JRA comment was

old-fashioned.  Rheumys with the latest knowledge know that children with

arthritis seem to have something unique and in subtle ways different from

rheumatoid or psoriatic.  So nowadays rheumys just call it JIA and take a wait

and see attitude as to whether kid grows into full fledged rheumatoid or

psoriatic.  She says sometimes they just keep JIA diagnosis into adulthood.  It

is treated with the same drugs as us adults so it doesn't really matter.  Sorry

for my old-fashioned language.

Learn something new every day

Janette

[Guest guest]

Thanks Janette,

It is really great that she is on top of things! I may be coming back to ask her

for advice!

[Guest guest]

My son was first diagnosed with uveitis. At that point we were referred to a

pediatric rheumy to see what was causing the uveitis and that is when

inflammation was found in his ankle and toe. Since Grant had been diagnosed

with psoriasis several years earlier his diagnosis was juvenile psoriatic

arthritis. I don't think it is a big deal as to whether it is called JRA, JIA,

psoriatic, spondylitis..... they are all pretty much treated the same way.

You may know this already but the ophthalmologist needs to do a slit lamp exam

in order to see if there is inflammation in the eye. Also - make sure that the

ped rheumy feels every joint for inflammation. I have heard that some don't

even do that. Grants labs and x-rays were all normal but after the physical

exam is when the inflammation was detected.

Keep us posted!

& Grant (12, psoriatic/uveitis)