Re: Chelsea

February 28, 2001

Hi ,

It must have been frustrating for you to have had concerns about your daughter's

eyes and then need to see three eye doctors before the problem was addressed. My

son hasn't had any eye involvement as a result of his JRA. He sees the

eye doctor regularly though, because some of the meds he takes to treat his

arthritis can affect the eyes. My son has systemic JRA. It's usually young

children with pauciarticular (four or fewer joints affected) JRA, often girls,

that more often have eye involvement. Iritis/uveitis. Many times their arthritis

will present mostly in the knees. Sometimes the eye disease is the most

prominent feature and their arthritis is relatively mild. The eye doctor

probably did a slit lamp exam. When you see the rheumatologist, they will

probably take a sample of your daughter's blood to check for

Anti-nuclear Antibodies. The result may be positive and if so, this will help

confirm the diagnosis. Since we don't have any personal experience with this,

I've found an article for you to read that may be helpful. I hope the formatting

is readable. Others may write in as well, because there are a few other children

represented here who have uveitis.

Take Care,

Georgina

How juvenile rheumatoid arthritis can affect a child's eyes

http://onhealth.webmd.com/conditions/condctr/arthritis/item,52755.asp

Children with juvenile rheumatoid arthritis (JRA) can develop

eye

problems, either as a result of the disease itself, or rarely,

as a side

effect of some medications.

If any part of the eye becomes damaged, changes in eyesight can

occur.

Although it might not seem possible, a disease that affects the

joints

can sometimes also affect the eyes.

What are some common eye problems that may affect children with

JRA?

Uveitis is the most common eye problem that can develop in

children with

JRA. Uveitis is an inflammation of parts of the eye. The uvea

consists

of the iris (the colored portion of the eye), the ciliary body

(which

produces fluid inside the eye and controls the movement of the

lens) and

the choroid (which lines the eyeball from the iris all the way

around

the eye). Uveitis may also be known as iritis or iridocyclitis,

depending on which part of the eye is affected by inflammation.

If the inflammation is not detected and treated early, scarring

and

vision problems can occur. Glaucoma, cataracts and permanent

visual

damage (including blindness) are all complications that could

result

from severe uveitis.

Uveitis can occur up to one year before, at the same time as,

or up to

15 years after JRA is diagnosed. It can also occur several

years after

JRA is in remission.

The severity of the child's joint disease does not determine

how serious

the uveitis might be. However, eye problems are more common in

children

with pauciarticular (few joint) arthritis. Eye problems also

are more

likely if your child has a positive blood test for antinuclear

antibodies (ANA).

How will I know if my child is developing eye problems?

Because eye inflammation usually is not painful, the majority

of

children with JRA who develop eye problems do not have any

symptoms.

Rarely, children might complain of light bothering their eyes

or blurred

vision. Sometimes your child's eyes may look red or cloudy.

However,

these symptoms usually develop so slowly that permanent eye

damage can

occur before any visual difficulties are noticed.

In order to detect eye problems and prevent them from causing

damage,

your rheumatologist will schedule frequent appointments with a

pediatric

ophthalmologist. An ophthalmologist is a medical doctor who

specializes

in diagnosing and treating eye diseases. An ophthalmologist is

different

from an optometrist, who does not prescribe treatment in many

states.

What happens during an ophthalmologist appointment?

The eye exam performed by the ophthalmologist is painless and

may last

up to two hours. Be sure to tell the ophthalmologist about the

medications your child is taking (your rheumatologist can tell

you the

names of the medications, the dosages and why they have been

prescribed).

Prior to the eye exam, the ophthalmologist will put drops in

your

child's eyes (which may burn a little) to dilate the pupils.

Dilating

your child's eyes helps the doctor clearly view the inside of

the eyes.

To detect eye inflammation, an ophthalmologist uses a special

microscope

called a slit lamp. The machine shines a thin beam of light

into one eye

at a time so the doctor can view the inside of the eyes. A

visual field

exam also may be performed to detect vision changes.

How can eye problems be prevented?

Carefully follow your child's medication guidelines and keep

all

scheduled appointments with the rheumatologist and

ophthalmologist, even

if you don't think your child has eye problems or if the JRA is

in

a less-active period.

How often should my child have eye examinations?

The frequency of your child's eye exams will depend on the type

of JRA

he or she has, and what medications have been prescribed.

Because

iridocyclitis is more common in children with certain types of

JRA, such

as pauciarticular JRA, more frequent eye examinations (every

three to

four months) may be recommended. Children with polyarticular or

systemic

JRA usually need an ophthalmologist's examination every six to

12

months. Eye exams should continue for five years after your

child's

arthritis goes into remission. Ask the rheumatologist and

ophthalmologist how often your child's eye exams should be

scheduled and

follow their recommendations. If eye problems are detected,

more

frequent examinations will be necessary.

How can eye problems be treated?

If eye problems occur, your rheumatologist and ophthalmologist

will

discuss ways to treat them to prevent permanent eye damage. If

uveitis

is diagnosed, different types of eye drops may be prescribed.

Mydriatric

drops may be prescribed, which dilate the eyes to keep the

pupils open

and help prevent scarring.

Steroid (cortisone) drops may be prescribed to reduce swelling

and

decrease inflammation. However, long-term use of steroid eye

drops can

have significant side effects. Newer, nonsteroidal

anti-inflammatory eye

drops are now available.

If eye drops are not effective in decreasing the inflammation,

oral

steroids may be prescribed. Oral or injectable methotrexate is

often

used to treat significant eye inflammation so the long-term

side effects

of steroids can be avoided.

February 28, 2001

-

Wow, I've never heard of the eye inflammation coming before every thing else.

Lots of kids with jra are at increased risk for eye inflammation (iritis,

uveitis), especially if they test positive for ANA. My daughter has a

positive ANA and has to be checked by a pediatric opthamologist every 3 or 4

months. So far, she hasn't had a problem. Usually, the swelling can be

brought down by steroid drops. I've also heard that methotextrate or Enbrel

sometimes help with this. I'm surprised you hadn't noticed any joint

problems before. You'll find lots of good info here on jra and on

uveitis/iritis. Good luck. Feel free to ask questions. Someone here's sure

to answer.

Diane

February 28, 2001

Although Meghann was not dx'd through eye problems, she did have a pretty

good case of iritis when we dx'd the JRA. We took her to the opthomalogist

within a week of dx. It took two rounds of drops (5 times a day) to get rid

of it.

Because we were dealing with severe breathing problems at the time the

symptoms probably didn't even make a dent into our concerns. (You don't

breath, you don't live). Basically in a 2 1/2 month period we were dealing

with obstructive sleep problems (chest would concave down to back bone),

surgery to relieve the problem, and this annoying knee problem that turned

out to be JRA. We never thought a moment about the eyes.

Sharon and Meghann

JRA and PRS

Re: Chelsea

> -

>

> Wow, I've never heard of the eye inflammation coming before every thing

else.

> Lots of kids with jra are at increased risk for eye inflammation (iritis,

> uveitis), especially if they test positive for ANA. My daughter has a

> positive ANA and has to be checked by a pediatric opthamologist every 3 or

4

> months. So far, she hasn't had a problem. Usually, the swelling can be

> brought down by steroid drops. I've also heard that methotextrate or

Enbrel

> sometimes help with this. I'm surprised you hadn't noticed any joint

> problems before. You'll find lots of good info here on jra and on

> uveitis/iritis. Good luck. Feel free to ask questions. Someone here's

sure

> to answer.

>

> Diane

>

> To manage your subscription settings, please visit:

>

> For links to websites about JRA:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

December 19, 2001

Thank you Belinda,

We should know more tomorrow we get the prelim Blood Culture results. She is

such a GREAT patient and I am SOOOOOOOOO Very Proud of her. She is a fighter

and will get through this as well! My well wished to all the pumpkins and

their families.

Marlo

December 19, 2001

Thank you Belinda,

We should know more tomorrow we get the prelim Blood Culture results. She is

such a GREAT patient and I am SOOOOOOOOO Very Proud of her. She is a fighter

and will get through this as well! My well wished to all the pumpkins and

their families.

Marlo

December 19, 2001

I know what you mean Ursula......This would of only been our third X-mas

home. There still is a possibility she will be home in time, however on IV

Unyson. I am so happy to hear Macy is well at this time.

Happy Holidays!

Marlo

December 19, 2001

I know what you mean Ursula......This would of only been our third X-mas

home. There still is a possibility she will be home in time, however on IV

Unyson. I am so happy to hear Macy is well at this time.

Happy Holidays!

Marlo

December 19, 2001

Thank you !

I will update you all tomorrow, I must try and get a few hours sleep as I

need to work in the am.......

Take Care!

Marlo

December 19, 2001

Thank you !

I will update you all tomorrow, I must try and get a few hours sleep as I

need to work in the am.......

Take Care!

Marlo

December 19, 2001

Marlo,

My thoughts and prayers will be with Chelsea for a speedy recovery and a

trip home in time for Christmas.

Grace 8/14/97 (IgA def, selective T-cell deficiency,pneumococcal antibody

deficiency, mild asthma, allergies)

Caelan 8/26/99 (IgA def, selective T-cell deficiency, pneumococcal antibody

deficiency, asthma, eosinophilic esophagitis, severe food allergies)

December 19, 2001

Marlo,

My thoughts and prayers will be with Chelsea for a speedy recovery and a

trip home in time for Christmas.

Grace 8/14/97 (IgA def, selective T-cell deficiency,pneumococcal antibody

deficiency, mild asthma, allergies)

Caelan 8/26/99 (IgA def, selective T-cell deficiency, pneumococcal antibody

deficiency, asthma, eosinophilic esophagitis, severe food allergies)

December 19, 2001

Marlo - our prayers are with Chelsea and a speedy recovery and trip home. This

is actually the first year in the last 4

that Macey was not either inpatient or in the emergency room sick for Christmas.

Let us know what they find.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net

December 19, 2001

Marlo - our prayers are with Chelsea and a speedy recovery and trip home. This

is actually the first year in the last 4

that Macey was not either inpatient or in the emergency room sick for Christmas.

Let us know what they find.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net

December 20, 2001

Thank you ,

It is tough tight now but Chelsea has a GREAT Spirit and is such the Big Girl

that it helps......

Thanks Again

Marlo

December 20, 2001

Thank you ,

It is tough tight now but Chelsea has a GREAT Spirit and is such the Big Girl

that it helps......

Thanks Again

Marlo

December 20, 2001

Marlo: Please know that my thoughts and prayers are with Chelsea and your

family right now. I also know from past experience how hard it is to have a

child in the hospital at the holidays.

--mom to , 8, dysgammaglobulinemia, leukemia-in remission, etc.;

, 10, , 3

December 20, 2001

Marlo: Please know that my thoughts and prayers are with Chelsea and your

family right now. I also know from past experience how hard it is to have a

child in the hospital at the holidays.

--mom to , 8, dysgammaglobulinemia, leukemia-in remission, etc.;

, 10, , 3

December 28, 2001

Thanks Ursula....It has been quite the week.. She just finsihed a round of IV

Unasyn every six hours and appears to be doing well. I got a call from the

Pedatrician and I know she wants us to see a pulmonary doc soon at Childrens

of LA not looking forward to this. Thanks for asking. We will be testing

again for cystic Fibrosis. Hope Macey is well. Happy New Year!

Marlo

December 28, 2001

Marlo how's Chelsea doing? Is the line doing ok? Will the recheck her counts or

just finish the IV's and go from there?

I wish her a speedy recovery and happy New Year.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net

March 27, 2010

Hi Chelsea,

Please got to the FILES section of CAST to dwnld/read a published, medical

journal titled " Growth as a corrective force in the early treatment of

progressive infantile scoliosis, " by Mehta. May I also recommend that you

view " A New Direction, " DVD...(Everyones strapped for cash these days, so

if you want me to loan the dvd, thats no problem at all....) These 2 items

will help you to better understand the principles of this gentle,

effective,treatment modality....A properly applied EDF cast is far more

comfy than an ineffective brace...Most experienced parents will agree.

The advice you have been given so far is spot on, so please research Early

Treatment with EDF/Mehta casting and ask us any questions at all. If you

decide to pursue St. Louis please clarify that they will be using a proper

frame with the 3-dimensional corrective ability, the correct materials,

and understand the importance of properly trimmed windows.

You are on the right track, so just keep going with your maternal

instinct!! Its always right.

Glad you found us!

HRH

> Judy, Thank you so much for that info. I'm also seeing Dr. " a " if its the

> same one in ortho! He has seemed very nice through all of this but just

> kept saying we could wait two months and ten come back to see if aubreys

> scoliosis has got any better otherwise he wanted to brace. But I do

> believe im going to call on monday and see if i can get an appointment to

> talk about putting a cast on her because she does have a very big curve in

> her back andi think i would be better off putting the cast on where as

> with the brace i can take it off. We've been trying to get some medical

> help for aubrey due to that fact we are not rich! I stay at home just

> because with all these appointments theres no way i could keep a job and

> have them let me off for everything. But our familes arent exactly

> supportive in our decision so thats really been the only hard part. Aubrey

> is holding up like a trooper and thats pretty much what gets me through.

> She does not like the brace and I do feel bad for putting in on, but I

> would rather her cry then not be here like the doctor said if we didnt do

> anything. So as of right now im taking it one day at a time, and im going

> to look into all the places you have said in this message and see if i can

> get some things figured out! Thank you so much -Chelsea

>

>> > >

>> > > As a side note, my cousin is a nurse at childrens mercy and they

>> don't currently use derotational casting to my knowledge. St. Louis

>> Shriners, salt lake city or Chicago are your closest options.

>> > >

>> > > Sent from my iPhone

>> > >

>> >

>>

>

March 27, 2010