Re: Mom desparately seeking answers

[Guest guest]

Yes. Right after my daughter was diagnosed late in the afternoon when the

Naposyn would wear off, she would have a fever and be very weak. She was having

joint pain at that time. I don't recall too many fevers without joint pain

during this period. Previously,there was a period when she would go into the

doctor and they always claimed she had a fever. She also has autoimmune liver

issues, so I attributed it to that. I am quite sure it is rather common with

systemic jra to run a fever.

Jo

Jo

>

> Hello. My son just turned 4 years old in February. When he was 2 1/2, he

started having very high fevers. He would just have fever, no other symptoms.

We would call his doctor and she would say that it was just a " virus " . That was

in October 2009 when the fevers started. In March 2010, although I had not

recorded the dates of the fevers, I noticed that they were coming at regular

intervals. After being told by his pediatrician that they were just " viruses " ,

I decided to switch him to a new pediatrician. In my opinion, viruses do not

come every 4 weeks. At that time, I started documenting his fevers and they

were coming so regular that I could mark my calendar as to when they would come.

He also developed a new symptom with leg pain when he had his fever. At his

first visit with his new pediatrician, they did blood workup. He had an

elevated ANA and very low iron level. He was sent to a pediatric rheumatologist

and the workup there was negative. He was then sent to a pediatric infectious

disease specialist who said that they " thought " that it might be (a

periodic fever disorder) but there is really no test for that so this was just

guessing.

>

> Well, it is now March 2011. He is still fevering regularly, every 4 to 5

weeks. He has SEVERE joint pain. He gets up in the morning and can't walk. I

have to carry him. He cries with his legs hurting and feet hurting during the

night. He has also even complained with his wrists hurting. We have another

appointment with the infectious disease doctor and the pediatric rheumatologist

on Monday. I can't help but feeling that he has some form of arthritis. He has

no other symptoms with these fever episodes other than severe joint pains. He

also had his first eye exam last week and he was diagnosed with a lazy eye. I

have also read where juvenile arthritis can lead to eye problems.

>

> My reason for posting in this group is to ask if any of you have experieced

anything like my son's problem.

>

> Any help would be greatly appreciated.

>

> Thank You.

>

[Guest guest]

My son, , had fevers as well and leg pain that we were told was growing

pains for a long time plus so many other issues pointing to JRA that our

pediatrician misdiagnosed. Our first visit to a pediatric rheumatologist wasn't

much better! It wasn't until we had MRI's done on 's knees and ankles

that the rheumatologist took it seriously...even though all of his blood work

pointed to JRA from the beginning. The best thing we ever did was find another

pediatric rheumatologist. She diagnosed him correctly, found all of the spots

of inflammation without us even having to tell her that's where his pain

was...she is amazing. The difference between the two rheumatologists were like

night and day! If your pediatric rheumatologist is basing his diagnosis on

blood work alone, then my advice would be to find a new pediatric

rheumatologist. Some children don't have all the telltale signs like elevated

labs or red, warm, swollen joints. My son only had 1 knee that was swollen (not

red or even warm to the touch), yet she found many joints involved, all which

were painful and stiff. His MRI's even confirmed the damage done in one knee

from being left untreated for so long and the other knee wasn't far behind! My

son is remarkably better now that he has been put on the right medication. He

still has issues with his knees, but feels a thousand times better than he did.

I also wanted to mention that my son also came up ANA positive which puts him at

an increased risk for developing inflammation in his eyes, it's called uveitis.

He has to go to a pediatric opthamologist for routine eye exams to check for

inflammation every 4 months. Please make sure you stay on top of that because

uveitis can cause blindness. Go with your gut feelings as a mom...you know your

child best. Keep pushing until you get your answers. Maybe think about an MRI,

or finding a new rheumatologist.

Good luck with everything! I hope you find your answers quickly and your son

gets on the road to feeling like a typical, happy, painfree 4 year old very

soon!

(, 12, Poly JRA)

From: melindaparks@...

Date: Fri, 18 Mar 2011 14:18:50 +0000,,

Subject: Mom desparately seeking answers

Hello. My son just turned 4 years old in February. When he was 2 1/2, he started

having very high fevers. He would just have fever, no other symptoms. We would

call his doctor and she would say that it was just a " virus " . That was in

October 2009 when the fevers started. In March 2010, although I had not recorded

the dates of the fevers, I noticed that they were coming at regular intervals.

After being told by his pediatrician that they were just " viruses " , I decided to

switch him to a new pediatrician. In my opinion, viruses do not come every 4

weeks. At that time, I started documenting his fevers and they were coming so

regular that I could mark my calendar as to when they would come. He also

developed a new symptom with leg pain when he had his fever. At his first visit

with his new pediatrician, they did blood workup. He had an elevated ANA and

very low iron level. He was sent to a pediatric rheumatologist and the workup

there was negative. He was then sent to a pediatric infectious disease

specialist who said that they " thought " that it might be (a periodic fever

disorder) but there is really no test for that so this was just guessing.

Well, it is now March 2011. He is still fevering regularly, every 4 to 5 weeks.

He has SEVERE joint pain. He gets up in the morning and can't walk. I have to

carry him. He cries with his legs hurting and feet hurting during the night. He

has also even complained with his wrists hurting. We have another appointment

with the infectious disease doctor and the pediatric rheumatologist on Monday. I

can't help but feeling that he has some form of arthritis. He has no other

symptoms with these fever episodes other than severe joint pains. He also had

his first eye exam last week and he was diagnosed with a lazy eye. I have also

read where juvenile arthritis can lead to eye problems.

My reason for posting in this group is to ask if any of you have experieced

anything like my son's problem.

Any help would be greatly appreciated.

Thank You.

[Guest guest]

Here's our story...it's very long but it may help...

My son was adopted from Russia the at 8 months old...10 days after returning

home with him...he ended up in the PICU (for another issue). He was released by

the other doctor after about 24 hours BUT...he had an unexplained high

fever...so he stayed in the PICU for a week. They did all sorts of tests, he saw

all sorts of doctors that week he spent in the hospital. Yet no one could

explain his high fever...finally we got him released even though he still had

the fever.

Over the next two years he had regular (monthly) 'viruses' with the accompanying

very high fevers...twice in those two years (almost exactly a year apart) he was

hours away from being hospitalized again. Also during those two years, had

all sorts of struggles...things we blamed on being institutionalized as an

infant and the stress of his adoption. He had, among other things...sensory

issues, attachment issues, significant developmental delays, issues gaining

weight, etc. All common issues with kids who are adopted from Russia.

At age 2.5 he had his tonsils & adenoids out and I stopped working...so he

stopped going to daycare. We hoped that would solve his problem of breing 'virus

velcro'...it didn't and he still got very high fevers. I was told some kids just

get 103, 104, 105 fevers...so I wasn't fazed by them any more.

At age 3.5 he was evaluated by a team of professionals in our wonderful school

district. I was thrilled they had experience with post institutionalized (PI)

kids. They deemed his delays severe enough that he immediately qualified for

this great program our district offers. He got an IEP for a severe speech

impairment and overall significant developmental delays (both gross & fine). He

started attending a special needs preschool right after his 4th birthday.

Right before this however he ended up in the hospital for croup and had a 105.8

fever...it freaked even me out...especially because he acted fine even with such

a high fever. Two months later he had his vaccinations...in my opinion they were

the trigger for his disease (not the cause of it...just what finally triggered

it)

He was now in school full time and going to OT...we started noticing his one

knee was more 'knobby' than the other. We assumed he had hurt it at school. We

now would joke (to ourselves) that he ran like an old man.

Finally at age 5.5 we noticed he was really limping some mornings...at this

piont he was in feeding therapy as well as OT and still in a special needs

program at school. He had FT early in the mornings (7:30) and one day exactly

two years ago the FT noticed his knee, felt it, and called in a PT who happened

to be in that early. She urged us to see the pediatrician ASAP...she was the

first to utter JIA.

The next morning we saw the pedi...he 'called' in a favor so we could see a pedi

ortho at a local children's hospital that day. We heard the words JIA two

additional times that day.

Ten days later we saw the pedi rheumy and was tentatively dxed with

polyarticular JIA...which bloodwork later confirmed.

Since we started treatment and he has improved so much...in so many aspects...we

all realize that so many things we assumed were related to his early life in

Russia was probably related to autoimmune issues and the untreated pain of JIA.

In my heart and gut, I feel the very first high fever episode at age 8.5 months

old was the start of it.

In his first 5.5 years of life he saw SO MANY doctors and therapists...yet no

one ever thought about his struggles being related to JIA. His high fevers we

always viruses...his low iron...feeding issues...his delays...PI related...his

sensory & attachment issues...adoption related. Looking back now it's clear it

was JIA and untreated (unknown) pain.

's poly impacts his toes, knees, hips, shoulders, elbows, and fingers...he's

currently in OT and on Enbrel, methotrexate injections, and folic acid. He

started Enbrel in July 09, by his November 09 appointment he showed Bo signs of

active disease. We are currently weaning him from the MTX. He is doing great

and is getting to enjoy his childhood. He is still very, very thin but we are

working on that as well.

I hope my very long winded post helps...all the best.

& , 7, poly...nystagmus...

Sent from my iPhone

[Guest guest]

I forgot to add... has had low iron issues, he is ANA+, and we just got done

patching his eye for 3 hours a day..for the past two years...for 'lazy' eye. He

also has nystagmus which makes our pedi ophthalmologist nuts...it makes checking

his eyes for JIA quite a task.

& , 7, poly

Sent from my iPhone

[Guest guest]

That's something ... also has a lazy eye, but I never thought of it

as related because I do as well. He has also had low iron issues off and on

since he was 4 years old and developed his first high fever (105.8) when he was

16 months. He was hospitalized for 4 days while they ran a bunch of tests, they

even made us hold him down while they did a spinal tap to test for

menangitis...in the end, even the infectious disease specialist found nothing

and sent us home on the 5th day when his fever broke. I never thought about

that as possibly being the beginning of it all. He even got a rash on the 5th

day and subsequent off and on rashes throughout his childhood.

& , 12, poly

From: ahna08@...

Date: Sat, 19 Mar 2011 05:08:52 -0700

Subject: Re: Mom desparately seeking answers

I forgot to add... has had low iron issues, he is ANA+, and we just got done

patching his eye for 3 hours a day..for the past two years...for 'lazy' eye. He

also has nystagmus which makes our pedi ophthalmologist nuts...it makes checking

his eyes for JIA quite a task.

& , 7, poly

Sent from my iPhone

[Guest guest]

,

Wow it's crazy how similiar our stories are. I have no idea if 'lazy' eye is

part of 's JIA since kids with nystagmus often have other vision issues.

did see a pediatric neuro ophthalmologist at Bascom Palmer Eye Institute

and we know his nystagmus is not due to anything else (it's neurological and

congenital) so perhaps lazy eye is part of the JIA.

What's weird is that does not have systemic...he saw a pedi cardiologist

right after he was dxed for a heart murmur but it was determined is was a

'normal' murmur (the real dx escapes me right now.). He has never had the

systemic rash...but since we got the JIA under control...the fevers stopped.

He's actually been much healthier since starting the Enbrel...no more 'viruses'.

This is why I love this group...it's amazing how in sharing our stories we learn

so much.

& , 7, poly...and celebrating his 7th Adoption Anniversary tonight!

>

>

> That's something ... also has a lazy eye, but I never thought of

it as related because I do as well. He has also had low iron issues off and on

since he was 4 years old and developed his first high fever (105.8) when he was

16 months. He was hospitalized for 4 days while they ran a bunch of tests, they

even made us hold him down while they did a spinal tap to test for

menangitis...in the end, even the infectious disease specialist found nothing

and sent us home on the 5th day when his fever broke. I never thought about

that as possibly being the beginning of it all. He even got a rash on the 5th

day and subsequent off and on rashes throughout his childhood.

>

> & , 12, poly

>

>

>

> From: ahna08@...

> Date: Sat, 19 Mar 2011 05:08:52 -0700

> Subject: Re: Mom desparately seeking answers

>

>

>

>

>

>

> I forgot to add... has had low iron issues, he is ANA+, and we just got

done patching his eye for 3 hours a day..for the past two years...for 'lazy'

eye. He also has nystagmus which makes our pedi ophthalmologist nuts...it makes

checking his eyes for JIA quite a task.

>

> & , 7, poly

>

> Sent from my iPhone

>

>

>

>

>

>

[Guest guest]

Thank you all for your responses. We have appointments with infectious disease

and rheumatology tomorrow. I hope we can get some answers. We have been seeing

these doctors for over a year now. They just keep saying to wait it out, that

he might outgrow this. It has been 1 1/2 years and I do not think he is going

to outgrow this.

Here are his symptoms. Monthly fevers with severe joints pains and body aches,

+ANA, anemia, and recently diagnosed lazy eye that we are having to patch every

day.

Thanks

>

> I forgot to add... has had low iron issues, he is ANA+, and we just got

done patching his eye for 3 hours a day..for the past two years...for 'lazy'

eye. He also has nystagmus which makes our pedi ophthalmologist nuts...it makes

checking his eyes for JIA quite a task.

>

> & , 7, poly

>

> Sent from my iPhone

>

[Guest guest]

never mentioned headaches but he appears to have a high tolerance to

pain...probably from being in pain for so many years. He has recently had two

sinus infections...the first one was severe and he did not complain at all. He

was/is very sensitive to certain sounds and noises...we always blamed his

sensory issues. Maybe we were wring about that too...

I hope you get some answers....update us after the appointments.

& , 7, poly...nystagmus...SPD...

Sent from my iPhone

[Guest guest]

Melinda,

Both of my children have JRA and migraines. They both take preventatives for

the migraines.

I just read your earlier posts. I am a nurse as well as mom. I would quickly

find a second opinion if these doctors didn't find an answer VERY soon. This

has been going on too long and without treatment for too long.

In the (rare) case that they are correct, a second opinion NEVER hurts. I don't

know what part of the country that you are in, but there are plenty of moms on

here that can recommend a pediatric rheumatologist that is good. If not, I would

contact the Arthritis Foundation. It is worth the drive to find a great doctor.

Keep up the fight for your baby!

Audra

14 poly 07

Peyton 13 poly 08

>

> One more thing that I forgot to ask. When my child has these bouts of fever

and joint pain, he also holds his head and cries with headaches. Does any of

your children also have headaches?

>

> Thank You

>

> Melinda

>

[Guest guest]

Interesting about the eye. I know JRA can impact the vision, but they act like

only the eye inflamation issue is related to this disease. It makes you wonder.

My daughter had perfectly good vision until a few months after the JRA

diagnosis. Suddenly she is near-sighted, which they claim is unrelated, but

they do check for the eye inflamation every 3 months.

Jo

>

> One more thing that I forgot to ask. When my child has these bouts of fever

and joint pain, he also holds his head and cries with headaches. Does any of

your children also have headaches?

>

> Thank You

>

> Melinda

>