Concerns about infectious diseases

[Guest guest]

Our daughter (5 years old) has systemic JRA. SHe became ill in March with

stiff neck and pain. After two weeks the fever and the rash began so did the

High SED rate and platelet count. Many test were done to rule out other disease

as well as two biopsies. She is on MTX, Naproxen, Zantac and 1.5 ml of

predisone daily as well as folic acid. The fever and rash is gone. She has

mild

swelling on both of her wrist and is not bending them very well. The swelling

has left her knees and ankles but she is stiff in the AM and when she has been

sitting for a while. She will be fitted for braces tommorrow due to her

legs are turning inward. I would be grateful for any info anyone will share.

She goes back to school in one week and we are so worried about what will happen

when she gets her first virus. How will her body fight it with a suppressed

immune system? Does anyone have suggestions about diet - I have heard that

cow's milk is not good for arthitis? What about corn products? She has gained

her weight back that she lost when she was first sick and grew one half inch

this summer so the doctor is happy about that. We missed the conference due

to her not traveling well but we are hopeful that we will go next year. Again

any info will be great. Reading the " " has helped - in the fact that

we are not alone and anyone sounds so positive and helpful. Thanks - Ken, Sandi

and Hunter (5systemic)

[Guest guest]

My daughter is in the same boat as far as the immune situation. Aubrey was

Diagnosed with JRA just this Feb she is extremely mild but she has a severe case

of Iritis/Uveitis....She is on MTX and at 20mg oral........she has a weak immune

system before Mtx and after missed 20 days of school the beginning of school is

ok but as it gets closer to flu and cold season I feel edgy about her going

into the nurses office. She has to do eye drops as often as every two

hours.....My daughter was lucky and had teacher who believed in washing hands

often, I do hope we are lucky again. I almost want to offer those liquid

sanitizer in the class to her new teacher your concerns, I would feel are

normal. Even in my peds office if there are allot of kids sick and we are there

are for sick appt, we ask to place elsewhere she may come in for one thing and

leave with another.I am going make sure the teacher let me know when there has

been a chicken pox exposure, Aubrey has the shot but I would like to know with

her on a Immuno suppressant............I hope I didn't freak you out , I feel

the same as you.....you are not alone.//............Terri B

Concerns about infectious diseases

Our daughter (5 years old) has systemic JRA. SHe became ill in March with

stiff neck and pain. After two weeks the fever and the rash began so did the

High SED rate and platelet count. Many test were done to rule out other

disease

as well as two biopsies. She is on MTX, Naproxen, Zantac and 1.5 ml of

predisone daily as well as folic acid. The fever and rash is gone. She has

mild

swelling on both of her wrist and is not bending them very well. The swelling

has left her knees and ankles but she is stiff in the AM and when she has been

sitting for a while. She will be fitted for braces tommorrow due to her

legs are turning inward. I would be grateful for any info anyone will share.

She goes back to school in one week and we are so worried about what will

happen

when she gets her first virus. How will her body fight it with a suppressed

immune system? Does anyone have suggestions about diet - I have heard that

cow's milk is not good for arthitis? What about corn products? She has gained

her weight back that she lost when she was first sick and grew one half inch

this summer so the doctor is happy about that. We missed the conference due

to her not traveling well but we are hopeful that we will go next year. Again

any info will be great. Reading the " " has helped - in the fact that

we are not alone and anyone sounds so positive and helpful. Thanks - Ken,

Sandi

and Hunter (5systemic)

[Guest guest]

In a message dated 8/1/04 3:09:44 PM Central Standard Time,

deerhuntert6@... writes:

> She goes back to school in one week and we are so worried about what will

> happen

> when she gets her first virus. How will her body fight it with a suppressed

> immune system? Does anyone have suggestions about diet

Hi,

Just a couple things I learned at AJAO.The pred is the drug you have to worry

about supressing the immune system.It has been our experiance that

wouldn't get sicker(usualy) but things would hang around longer.The biggerst

problem was the pred would mask symptoms of an illness and make it hard to

diagnose.For example went to bed fine and woke up screaming over his

head.He

became very lethargic and the head ache kept getting worse.No visible symptoms

of

anything.Took him to the ER where he threw up and only then did he have

thick,green stuff in his nose.

There is no proof of any kinds of food helping arthritis.Stick to just a

healthy diet and don't skip out on dairy.Our kids our prone to bone

loss,especialy

from the pred.

Going back to the immune system.Our kids don't have weak immune systems but

over reactive immune systems.They can fight the illness just fine but the

immune system doesn't know when to turn itself off,so thats where the arthritis

symptoms can flare up after getting sick.Just be watchful for any sighns of

infection and our ped wants to see anytime his temp reaches 100.

Hugs

Becki and 6 systemic

[Guest guest]

Hi Ken:

This is a huge concern for me also. My daughter, Caitlin, has Still's

Disease. She is extremely fortunate to be in remission. It was triggered by a

Strep infection and knowing how sick she got from that threw me over the top

with

germs, etc. She was out of school for almost three months and I dreaded

sending her back. Of course, I couldn't keep her in a bubble so I sent her back

with a few precautions. She was under strict instructions (from me) to wash her

hands before she eats lunch. At her middle school they have a keypad that

they punch in the personal id number at the end of the line. This defeated the

handwashing. So she used Purell once at her table before she actually started

to eat. She was also excused from her class before lunch to go to wash up.

She had Purell in her locker too. The nurse, awesome lady, and her teachers

were all aware of what she had been through, how it happened and that she

needed to take some precautions. The nurse even called me one day because a

friend

of Caitlin's mother 'supposedly' had strep and Caitlin had been there the day

before. Fortunately, the mom did not have strep, just a sore throat. This

nurse has her back! When Caitlin comes into the clinic, for whatever reason,

the nurse has her wait out of the clinic because of all the germs/sick children

in there at any given time. If Caitlin needs to be picked up from school,

she has her wait in the office with the staff not the clinic.

Caitlin is also on prophylactic antibiotics as they (the pediatrician)

suspected Rheumatic Fever and put her on Cefzil. The rheumy kept her on it

until

her symptoms subsided and we have both agreed to keep her on it through the

winter and spring and then off in the summer. This is a safety net for her.

When

she comes off it, I will worry more, I am sure.

When she went back to school she was around many people who were sick with

this or that. Her friends were very protective of her, but germs are there and

you pick them up no matter how cautious you are. Between the time she went

back and the end of the school year she got a couple of colds. One of her

sisters contracted strep in March and thankfully, Caitlin did not get in and she

was in the same household. Something's working:)

How did the brace fitting go? You go back to school earlier than we do.

What state are you in? Is she looking forward to school starting? Mine are

already complaining that they are bored LOL. One, Caitlin, even wants to go

back

to school:)

Take care.

Patty