New to Group

December 8, 2006

,

Yes you are welcome here. I am so sorry to hear of the very

challenging year that you and amanda have had. It seems like you

have both just jumped through one hoop into another.

As you will find by reading thru the posts there are many that have

struggled along the way to get an accurate diagnosis and treatment

for their child. There is nothing more frustrating that trying to

find outs whats wrong so that you can start to do something about it.

Have you been pleased with amanda's doctors?

What type of surgery were they looking to do? Have you had any

success in getting a homebound tutor? How has she been

keeping up with her studies?

This is such an informative and compassionate group of people.

Please feel free to vent or ask questions. Chances are pretty good

that someone will be able to respond or at least lead you in the

right direction.

Do you have a local arthritis foundation that you can be in touch

with? Often times they will have local support groups that can be

beneficial as well.

I am glad that you found us and hope that you will feel very

comfortable here.

Blessings,

sonia (aundrea 11 systemic jra/gerd)

>

> hi everyone,

>

> I am new to the group, and not even sure if we 'qualify' for this

group...I thought it was for JA but another message said JRA...we

don't have a definitive diagnosis yet...

>

> My daughter is 16. She has always been extremely active and

athletic, and also always had pain....from her feet waking her in

the night as a toddler to numerous bouts of tendonitis in knees and

shoulders throughout grade school to high school...but pushed

through the pain with lots of advil because her sports defined her.

She has always had chronic respiratory infections as well.

>

> About two years ago, she began getting sicker...mono and more

respiratory infections. Six months later, she received her first

diagnosis...CVID, a primary immune deficiency. She played most of

her water polo season last year but became progressively more ill,

and she began infusions January - we thought she would now start to

improve. Early Feb, she came down with viral meningitis. Since that

time, she has had chronic daily migraines and leg pain that never

ceases.

>

> Spinal CT was done to rule out lesions. In May saw peds rheumo at

UCLA. CRP and ANA both positive; dr not sure if after effects of

meningitis. Noticed rigidity in distal finger joints and signs of

past inflammation. My daugther was having a bad flare of bursitis in

her hip. Dr put her on anaprox. July, her blood work was okay,

although her pain was no better. In Aug, stomach was so bad, dr

removed her from Anaprox...She also joined a ped pain mgmt program

at UCLA at this time, but it has not helped either. Sept when

hospitalized for IV treatment, had vasculitis...October tests CRP

and ANA were high again so rheumo started Mobic. In Nov, the ENT

took her off all anti-inflammatory meds in prep for surgery...my

daughter did not think Mobic was helping her at all until she

stopped it...her hips and knees were excruciating over

Thanksgiving. Surgery postponed...medically unstable...

>

> Saw rheumo a few days ago. Daughter's left knee was

swollen..although her joints aren't often visibly swollen. Dr says

definitely arthritis...not certain what kind...tested RF but no

results yet. If I understand correctly, her IVIG infusions make the

diagnosis more difficult.

>

> It has been a long, frustrating year...my daughter has missed

almost two semesters of school now...we just finally got an IEP for

her...one more battle...she wants more than anything to have less

pain, to return to school, and to play water polo her senior year....

>

> Whether we belong in this group or not, thanks for listening...

>

> mom to , 16, arthritis, CVID, migraines

>

> ---------------------------------

> Access over 1 million songs - Music Unlimited.

>

December 11, 2006

Hi and welcome. Yes you belong. At her age, I would look into

spondylitis as a possibility. Check out the symptoms of it at

www.spondylitis.org <http://www.spondylitis.org/> or www.arthritis.org

<http://www.arthritis.org/> and see if any of them fit your daughter.

Make sure to get a slit lamp test eye exam to check for uveitis. An ANA

positive girl is more susceptible to that. Let us know how she is doing,

Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Friday, December 08, 2006 3:06 AM

Subject: new to group

hi everyone,

I am new to the group, and not even sure if we 'qualify' for this

group...I thought it was for JA but another message said JRA...we don't

have a definitive diagnosis yet...

My daughter is 16. She has always been extremely active and athletic,

and also always had pain....from her feet waking her in the night as a

toddler to numerous bouts of tendonitis in knees and shoulders

throughout grade school to high school...but pushed through the pain

with lots of advil because her sports defined her. She has always had

chronic respiratory infections as well.

About two years ago, she began getting sicker...mono and more

respiratory infections. Six months later, she received her first

diagnosis...CVID, a primary immune deficiency. She played most of her

water polo season last year but became progressively more ill, and she

began infusions January - we thought she would now start to improve.

Early Feb, she came down with viral meningitis. Since that time, she has

had chronic daily migraines and leg pain that never ceases.

Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA.

CRP and ANA both positive; dr not sure if after effects of meningitis.

Noticed rigidity in distal finger joints and signs of past inflammation.

My daugther was having a bad flare of bursitis in her hip. Dr put her on

anaprox. July, her blood work was okay, although her pain was no better.

In Aug, stomach was so bad, dr removed her from Anaprox...She also

joined a ped pain mgmt program at UCLA at this time, but it has not

helped either. Sept when hospitalized for IV treatment, had

vasculitis...October tests CRP and ANA were high again so rheumo started

Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep

for surgery...my daughter did not think Mobic was helping her at all

until she stopped it...her hips and knees were excruciating over

Thanksgiving. Surgery postponed...medically unstable...

Saw rheumo a few days ago. Daughter's left knee was swollen..although

her joints aren't often visibly swollen. Dr says definitely

arthritis...not certain what kind...tested RF but no results yet. If I

understand correctly, her IVIG infusions make the diagnosis more

difficult.

It has been a long, frustrating year...my daughter has missed almost two

semesters of school now...we just finally got an IEP for her...one more

battle...she wants more than anything to have less pain, to return to

school, and to play water polo her senior year....

Whether we belong in this group or not, thanks for listening...

mom to , 16, arthritis, CVID, migraines

---------------------------------

Access over 1 million songs - Music Unlimited.

December 12, 2006

Hi ,

thank you for your kind welcome. I was looking over the website and her

symptoms sounds most like JSpA as her focus of pain is hips, knees, and

sometimes heels...except for two things...under diagnosis, did I misunderstand

that they usually do not have a positive ANA , which she does - and the drs

repeated comments on the apparent dammage to the distal joints in her

fingers..Unless her RF comes back positive, I think it is worth mentioning to

the rheumy and will do so at her next appt.

How is your son doing? How was high school for him with the illness? This

combination of illnesses is just ruiing high school for . (she has missed

two semesters)..it breaks my heart...we are hoping to get enough of a handle on

her pain so she can be fully involved in her senior year...

Thank you for telling me about spondylitis - I am open to anything that might

help get a proper diagnosis and treatment! By the way, what is a slit lamp test

eye exam and uveitis?

I will let you know what transpires. Thanks again for your input.

" Tepper, Michele " <MTepper@...> wrote:

Hi and welcome. Yes you belong. At her age, I would look into

spondylitis as a possibility. Check out the symptoms of it at

www.spondylitis.org <http://www.spondylitis.org/> or www.arthritis.org

<http://www.arthritis.org/> and see if any of them fit your daughter.

Make sure to get a slit lamp test eye exam to check for uveitis. An ANA

positive girl is more susceptible to that. Let us know how she is doing,

Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Friday, December 08, 2006 3:06 AM

Subject: new to group

hi everyone,

I am new to the group, and not even sure if we 'qualify' for this

group...I thought it was for JA but another message said JRA...we don't

have a definitive diagnosis yet...

My daughter is 16. She has always been extremely active and athletic,

and also always had pain....from her feet waking her in the night as a

toddler to numerous bouts of tendonitis in knees and shoulders

throughout grade school to high school...but pushed through the pain

with lots of advil because her sports defined her. She has always had

chronic respiratory infections as well.

About two years ago, she began getting sicker...mono and more

respiratory infections. Six months later, she received her first

diagnosis...CVID, a primary immune deficiency. She played most of her

water polo season last year but became progressively more ill, and she

began infusions January - we thought she would now start to improve.

Early Feb, she came down with viral meningitis. Since that time, she has

had chronic daily migraines and leg pain that never ceases.

Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA.

CRP and ANA both positive; dr not sure if after effects of meningitis.

Noticed rigidity in distal finger joints and signs of past inflammation.

My daugther was having a bad flare of bursitis in her hip. Dr put her on

anaprox. July, her blood work was okay, although her pain was no better.

In Aug, stomach was so bad, dr removed her from Anaprox...She also

joined a ped pain mgmt program at UCLA at this time, but it has not

helped either. Sept when hospitalized for IV treatment, had

vasculitis...October tests CRP and ANA were high again so rheumo started

Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep

for surgery...my daughter did not think Mobic was helping her at all

until she stopped it...her hips and knees were excruciating over

Thanksgiving. Surgery postponed...medically unstable...

Saw rheumo a few days ago. Daughter's left knee was swollen..although

her joints aren't often visibly swollen. Dr says definitely

arthritis...not certain what kind...tested RF but no results yet. If I

understand correctly, her IVIG infusions make the diagnosis more

difficult.

It has been a long, frustrating year...my daughter has missed almost two

semesters of school now...we just finally got an IEP for her...one more

battle...she wants more than anything to have less pain, to return to

school, and to play water polo her senior year....

Whether we belong in this group or not, thanks for listening...

mom to , 16, arthritis, CVID, migraines

---------------------------------

Access over 1 million songs - Music Unlimited.

December 12, 2006

has a positive ANA, negative RF. What the dr may check for, in

looking for a spondy diagnosis with the blood work, is a positive

HLA-B27 marker. Now, is negative for that, but is still spondy. If

you are positive, you may have more organ involvement. Either way, the

diagnosis, as we were told, is based on symptoms. had a lot of

ankle involvement, particularly the Achilles tendon. His fingers are

also involved, mostly with knuckle swelling. Sometimes the drs felt he

may have had psoriatic arthritis, but have always stuck with the spondy

diagnosis since it was made, about 6 months after the initial JRA

diagnosis. He began to have back involvement, which the dr found to be

inflammation of his pelvic rim. That is when she diagnosed him with

spondylitis.

Overall, is now doing well. We were lucky in that he did not miss

a lot of school. He did however, not participate in a lot of extra

curricular's as he had planned to do. He was big into baseball and

volleyball, but when the arthritis hit, he lost the ability to run for

about 2 years. By the time the meds kicked in well enough to allow that,

he was behind the other guys and sports being quite competitive where we

are, he did not feel he could compete well enough, so he did not try. He

did play ball locally for a couple of summers at first, but did not keep

up with it. He did well in school, and once he was on methotrexate which

is the DMARD that really helped him, he was physically much better. He

did not get as sick in high school as he used to in grammar school. The

hardest thing was getting him to keep up with the meds, and drs visits

and now that he is older, he does not keep up with taking care of

himself. He has days now when he has pain, and there is not much I can

do, but encourage him to go back to the dr and start on meds again. The

drs tell me this is quite common with kids with chronic illness that as

they get older, they don't always do what they should.

A slit lamp eye test is simply the eye dr dilating the pupils with

special drops and then using a special light to look for inflammation of

the eye. Arthritis of the eye, uveitis, can happen and there are no

symptoms you can see by just looking. There are several kids on the list

with this. I will say, this is the one dr does keep up with. When

he was first diagnosed, he went every three months for the test. After

one year clear, he started going every six months. For seven years after

diagnosis the eye dr said, he should come for the test every six months.

It is very important as blindness or other vision problems can happen if

it goes undiagnosed. It is treatable if inflammation is found. I hope

this has helped, and ask any questions you might have. There is a lot of

help here on the list, Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of nancy barnes

Sent: Tuesday, December 12, 2006 9:10 AM

Subject: RE: new to group

Hi ,

thank you for your kind welcome. I was looking over the website and her

symptoms sounds most like JSpA as her focus of pain is hips, knees, and

sometimes heels...except for two things...under diagnosis, did I

misunderstand that they usually do not have a positive ANA , which she

does - and the drs repeated comments on the apparent dammage to the

distal joints in her fingers..Unless her RF comes back positive, I think

it is worth mentioning to the rheumy and will do so at her next appt.

How is your son doing? How was high school for him with the illness?

This combination of illnesses is just ruiing high school for .

(she has missed two semesters)..it breaks my heart...we are hoping to

get enough of a handle on her pain so she can be fully involved in her

senior year...

Thank you for telling me about spondylitis - I am open to anything that

might help get a proper diagnosis and treatment! By the way, what is a

slit lamp test eye exam and uveitis?

I will let you know what transpires. Thanks again for your input.

" Tepper, Michele " <MTepper@...

<mailto:MTepper%40ftportfolios.com> > wrote: Hi and welcome. Yes you

belong. At her age, I would look into

spondylitis as a possibility. Check out the symptoms of it at

www.spondylitis.org <http://www.spondylitis.org/

<http://www.spondylitis.org/> > or www.arthritis.org

<http://www.arthritis.org/ <http://www.arthritis.org/> > and see if any

of them fit your daughter.

Make sure to get a slit lamp test eye exam to check for uveitis. An ANA

positive girl is more susceptible to that. Let us know how she is doing,

Michele ( 19, spondy)

________________________________

From: <mailto: %40>

[mailto: <mailto: %40> ]

On

Behalf Of nancy barnes

Sent: Friday, December 08, 2006 3:06 AM

<mailto: %40>

Subject: new to group

hi everyone,

I am new to the group, and not even sure if we 'qualify' for this

group...I thought it was for JA but another message said JRA...we don't

have a definitive diagnosis yet...

My daughter is 16. She has always been extremely active and athletic,

and also always had pain....from her feet waking her in the night as a

toddler to numerous bouts of tendonitis in knees and shoulders

throughout grade school to high school...but pushed through the pain

with lots of advil because her sports defined her. She has always had

chronic respiratory infections as well.

About two years ago, she began getting sicker...mono and more

respiratory infections. Six months later, she received her first

diagnosis...CVID, a primary immune deficiency. She played most of her

water polo season last year but became progressively more ill, and she

began infusions January - we thought she would now start to improve.

Early Feb, she came down with viral meningitis. Since that time, she has

had chronic daily migraines and leg pain that never ceases.

Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA.

CRP and ANA both positive; dr not sure if after effects of meningitis.

Noticed rigidity in distal finger joints and signs of past inflammation.

My daugther was having a bad flare of bursitis in her hip. Dr put her on

anaprox. July, her blood work was okay, although her pain was no better.

In Aug, stomach was so bad, dr removed her from Anaprox...She also

joined a ped pain mgmt program at UCLA at this time, but it has not

helped either. Sept when hospitalized for IV treatment, had

vasculitis...October tests CRP and ANA were high again so rheumo started

Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep

for surgery...my daughter did not think Mobic was helping her at all

until she stopped it...her hips and knees were excruciating over

Thanksgiving. Surgery postponed...medically unstable...

Saw rheumo a few days ago. Daughter's left knee was swollen..although

her joints aren't often visibly swollen. Dr says definitely

arthritis...not certain what kind...tested RF but no results yet. If I

understand correctly, her IVIG infusions make the diagnosis more

difficult.

It has been a long, frustrating year...my daughter has missed almost two

semesters of school now...we just finally got an IEP for her...one more

battle...she wants more than anything to have less pain, to return to

school, and to play water polo her senior year....

Whether we belong in this group or not, thanks for listening...

mom to , 16, arthritis, CVID, migraines

---------------------------------

Access over 1 million songs - Music Unlimited.

December 12, 2006

I understand how feels about not doing treatment. I myself went through

this rebellion.

When you are sick, and constantly having to take meds to feel " Normal " , you

feel like you have no control. So you stop getting treatment because that is a

decision you can make. I regret it now. It finally took my husband (then

boyfriend) pressuring me to take care of myself to get me back on track. Of

course by then I had suffered some irreversible damage. Mostly it's elbows that

no longer straighten, my knee needed a synevectomy. And I've lost range of

motion. But at the time, you couldn't have told me anything about taking care

of myself. I hope gets through this phase quickly, and doesn't lose as

much as I did.

JRA since 20 months old