New Member, 7 year old son with Reiters Syndrome

[Guest guest]

Im not sure that I should be posting here but I am so extremely

frustrated. Exactly 30 days ago my son was diagnosed with Reiters

sydrome. The Diagnoses didnt come easy for the all the doctors

involved. As my son was extremely ill for over six weeks, running

high fevers for almost a full month. Doctors first suspected Scarlet

fever, gave him a triple dose of antibiotics, which didnt even bring

down the fevers much at first. He had two well days after the meds

were finished and went right back into fevers.

I ran him back to the doctors and they said they didnt know why he

had a full body rash, why his eyes were red, and why he wasnt well.

Childrens hosptital ran blood tests, urine tests, ultrasounds on his

heart and other various organs as his inflammatory sed rates were

elevated very high.

Now Im told after 30 days of bloodwork that all else has been ruled

out, my son has reiters sydrome. He's home, cant go to school or

church to play with other kids as his immune system has been impaired

so they say due to Reiters. They can't explain how he got it this

young. From all Ive read its a young adults disease.

Just when my son starts to look well, he gets sick again, I thought

for sure that maybe the doctors were wrong as he hasnt presented with

lesions on his privates. That was until last night. Now we have

lesions.

Is there any hope for a cure, for the pain of the arthritis to

disappear on its own, for the immune system to kick back in? It kills

me to hear my son complain he doesnt feel well that his back aches

and that it hurts were he has sores.

I typically wouldnt post this anywhere, and Im not sure Im in the

right place, but I feel as though Ive run out of resources to help my

son.

Thanks for hearing me out

phs 38 Year old Mom!

Deb

[Guest guest]

Dear Deb,

I know your son had alot of testing done, but my son had similar symptoms and

they finally (at my request) tested him for mononucleosis (epstein-barr

virus) and he was positive. They were also able to tell it was recently

contracted

with blood tests ( I don't remember the exact tests they did). Did they test

your son for this? It's often overlooked in young children...

What about lyme disease? That can cause illness like that as well. Did they

test for that?

My son would nearly get well and then get sick again, just like your son -

high fevers, rashes, red eyes, severe fatigue. The mono was bad for the first

4-5 months, with constant relapses. It still kicked up every time he went out to

play for the first 9 mos and has finally subsided now, it's over a year

later, except that he sleeps alot more than he ever did before he got it. It

also

made his allergies alot worse and he has a high eosinophil count ever since

(this occurred during the mono bout as well...signifying severe allergies).

Please check into this...it's just a thought. Hope he is doing better soon.

Your friend...Debra!

[Guest guest]

Deb,

Welcome!

You most certainly have written the right place!!!

You will find here the most caring and loving people on the net. Your

letter will be read and responded to by these people who have so much

experience.

There is no cure for reiter's but the good news is that there are so many

new drugs that help with it. it is just a matted of finding the ones that

help the most.Finding a good dr is vital...

Anyway,

to intro myself I'm Liz, two days shy of 52, married to Jeff, no children

but 3 dogs and a zillion kittie, living in Lincoln, NE.

I have had reiter's for 20 yars now.. that sounds so long writing it

down...it feels like forever. I am in good control mode for the most part

now.. though the drugs are doing a number on my liver at this point. They

are watching that carefully.

I'm so glad ou are with us dear Deb.. ANY time you need advice, support,

or just to share joys and sorrows. we are here.

BIG HUGS

Liz

~~~~~~

" Happiness comes of the capacity to feel deeply, to enjoy simply, to think

freely, to risk life, and to be needed. " **Storm on**

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult ADD GROUP PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Deb,

I am sorry that your son is having to endure such pain and discomfort at such an

early age. Like your son I had my first bouts with Reiters Syndrome, now known

as Reactive Arthritis, when I was barely 10 years old. That was 45 years ago.

My symptoms progressed fairly slowly over several years with my first case of

Keratoderma blenorraghia (typical rash on hands, feet, and/or genitals) when I

was 11. Primary symptoms until then were IBS (irritable bowel syndrome),

inflammed eyes, ankle and heel pain, hand and finger pain, and lower back pain,

bladder spasms, ureathral inflammation causing frequency and urgency. At that

time a diagnosis of Reiters for a child was pretty unthinkable, especially since

it was assumed that all cases then were triggered as a result of an STD. My

parents were told to take me to a psychiatrist since no child could possibly

hurt that much.

Without a proper diagnosis I was condemned to finding individual doctors to

treat various symptoms. At age 26 a allergist put it all together and suggested

Reiters Syndrome as a possible diagnosis. Around the same time I had an

enormous flare-up of symptoms resulting in extreme pain, unbelievable fatigue,

and the rapid loss of 45 pounds in less than 3 weeks. Now that got the

attention of my doctors!

To make a long story shorter I was hospitalized for 7 long weeks and underwent

an exhausting battery of tests and scans. The end result was the diagnosis of

Reiters by the Vanderbilt Medical Center and the Rheumatology Clinic there

confirmed the diagnosis.

I wish I could tell you that having a diagnosis meant proper treatment, and a

lessening of symptoms and flare-ups. It didn't. Reiters Syndrome (RS), aka

Reactive Arthritis (ReA) has put a constant drag on my life. Just when I think

I'm clear and free of symptoms I'll encounter another flareup that will knock me

back down. I'm resilient though and keep getting back up to fight again.

Learning to balance life and still achieve life, school, career, social and

spiritual goals is something your son will have to learn. Please encourage him

to try anything and everything he wishes to explore even if it will tax him

physically. Everyone needs physical activity, especially children. You might

direct his efforts carefully, say toward soccer instead of football, or an

individual type sport like tennis or golf. Gymnastics is great for strength and

flexibility. Continued participation in exercise is important. Swimming is

ideal for any arthritic condition. The sooner you get him involved the better

off he will be physically and emotionally. Push him to overcome the pain and

fatigue when it is at a lower ebb to participate in sport activities. Don't

'protect' him by excusing him from every physical activity. Let him be the

judge as to whether he can participate, after he has tried the activity.

Symptoms vary from day to day and week to week. You will have to educate his

teachers, especially his gym teachers.

Hang in there. I got through school, have a B.S., degree and two Masters, and

may be going back to school for another. I have worked as an elementary

teacher, special education teacher, am an ordained minister,who has pastored

several churches, was a garden center owner, and hope to be one again. I'm 55

and am currently in the best physical condition of my entire life.

Please watch your child's weight. Being overweight is not helpful or desired.

Excess weight creates and aggrevates pain and other symptoms. Turn off the TV

and video games and require physical activity, even if it is just a walk around

the block with Mom, or a bike ride in the park. You'll be glad you did.

Ray Neal, moderator

former child with reiters syndrome