Re: Preschool or no preschool??

January 17, 2006

Tasha - our daughter was 5 when diagnosed with Systemic JRA. Here we are

two years later and we are still " tweaking her medications " to get the disease

under control. Every child is different - Even when Hunter's labs have been

normal and there is no sign of a flare - she still has days when she feels

sick - she is pale complains of tummy ache and feels down right yucky. She

stays home and rest and gets plenty of fluids. The disease that our children

have is very mysterious and difficult to treat at times. What medications is

your son taking? Our daughter's school was such a pain at first - they only

got to see Hunter on her good days - daH! I kept her home on her sick days.

Their attitudes changed when one day at school - Hunter developed life

threatening complications - she is fine but needless to say - the school became

very aware of how serious this disease is. Now two years later - Hunter has

made the principals list (all A'S) two times this school year - and she still

misses 3 to 4 days a month of school. We all work together for the best

possible world for Hunter. Good luck with your son's school - remember you are

not only his mother but his advocate when it come to this disease. Sandi Ken

Hunter (7Systemic)

January 17, 2006

Tasha - we kept Hunter home March, April, May 2004 (her preschool year)

During Kindergarten she was able to stay in school until Feb 2005 and was

homeschooled the rest of the year. (I was a teacher at that time and resigned)

She improved both times. Don't know if it was the fact she was home and the

care she got or if the disease just changed course. We have not had to go to

Embel/Enbrel? yet - she has done well with the MTX injections. She still has

a lot of stomach issues - went today to have Abdomen ultrasound and Upper GI.

Also incurs protein in her urine. Does your son ever experience night

sweats? Hunter also takes Naproxen and the Folic Acid (which was recently

increased to two tablets a day) She takes prevacid for her tummy. Is

Roseville a

suburb of Sacramento - we lived there for 5 years? What do the doctors think

is causing the abdominal swelling? Gotta go do the dinner thing - Oh - does

he take his lunch to school? Hunter always does better when I make her

lunch - I hope this info helps - I am not usually so long winded> Good luck -

it sounds like you have a pretty good handle of things - it took me awhile>

Sandi Ken Hunter (7 Systemic)

January 17, 2006

Tasha,

I was diagnosed at age 4 as well, and went through the public school

system, including pre-school. I too had bad days, but rarely missed

school. It was very important for myself, and my parents that I

continue in my education with a normal progression, and not get behind.

Kids are very versatile, especially ones with a chronic illness. I

think you can overcome any obstacle, and I have, in part due to my

parents strong will to help me keep going.

I hope this helps, and I hope others like me will voice their opinions

as well.

Fischer

DPA Architects, Inc.

pfischer@...

Preschool or no preschool??

Thanks to everyone who responded to my previous post. I am really torn

right now. My son, Elijah (age 4 diagnosed systemic Jan 2005) is

currently in preschool, but has been missing quite a few days. His

school started back from the holiday break on Jan. 9th, and he has

missed 3 days. He started feeling sick last Wed night and has yet to

feel better. I can tell when I talk to the school, they don't like that

he misses so much... but I refuse to send him when he's not feeling

well. My dilemna is... do I keep him in preschool or pull him out... I

just don't know what would be best.

Tasha (Roseville, CA)

January 17, 2006

When my oldest daughter (not my child w/JRA) was about 4, she developed

strep throat and scarlet fever every month for about 10 months. At one

point, in an effort to see if she would improve, we had to pull her out

of preschool. She was out for about 2 months, did not improve and had

her tonsils out. She went back after that. Her preschool was in a local

day care center and they were willing to be flexible with us. It is a

decision that only you can make. I was lucky - at the time I was a stay

at home mom - so work for me was not a factor. Keeping her home did help

her to get stronger, even though the infection was in her tonsils so not

really anything to do with preschool. I would talk with your ped and get

his/her thoughts. Also, talk with the teacher and school admin. Keeping

him out of preschool will not ultimately hurt how he does in school - my

daughter is in her last semester of college with great grades - and it

may help him to feel better/stronger and keep his incidence of colds and

things like that down for awhile. Good luck, Michele ( 18, spondy)

Preschool or no preschool??

Thanks to everyone who responded to my previous post. I am really

torn right now. My son, Elijah (age 4 diagnosed systemic Jan 2005) is

currently in preschool, but has been missing quite a few days. His

school started back from the holiday break on Jan. 9th, and he has

missed 3 days. He started feeling sick last Wed night and has yet to

feel better. I can tell when I talk to the school, they don't like

that he misses so much... but I refuse to send him when he's not

feeling well. My dilemna is... do I keep him in preschool or pull him

out... I just don't know what would be best.

Tasha (Roseville, CA)

January 17, 2006

Tasha,

I guess you are talking about private preschool where you pay if your child

is there or not.

My son caught a virus in preschool,actualy the transitional 2 yr class, that

triggered his arthritis.We had to take him out,he had systemic disease and was

totaly crippled in the beginning.

It took a little work but a few months later at the age of 3 we got him in

special ed preschool 2 days a week for 4 hrs.That was all he could handle.

Don't let special ed scare you.Most kids had ADD/ADHD or looked and seamed

perfectly normal.One child had recurrant ear infection and he had loss of

hearing.Only 1 child had a severe disability.

It helped us tremendously before our son actualy started kindergarten.

We were told it would be best to just teach him at home.I dissagreed,he

needed the social aspects of it all.

It was a hard decision to make but it was free unlike the almost $100 a week

for the place he was going to.

You have gotten alot of great advice and only you can make the decision.

Becki and 7 systemic

January 17, 2006

In a message dated 1/17/06 1:22:43 PM Central Standard Time,

burgesspierce@... writes:

> Thanks to everyone who responded to my previous post. I am really

> torn right now. My son, Elijah (age 4 diagnosed systemic Jan 2005) is

> currently in preschool, but has been missing quite a few days. His

> school started back from the holiday break on Jan. 9th, and he has

> missed 3 days. He started feeling sick last Wed night and has yet to

> feel better. I can tell when I talk to the school, they don't like

> that he misses so much... but I refuse to send him when he's not

> feeling well. My dilemna is... do I keep him in preschool or pull him

> out... I just don't know what would be best.

>

> Tasha (Roseville, CA)

>

Hi,

I can both sides of your dilemma. I have a 10 year old daughter with jra and

was diagnosed 3 years ago. I am also a kindergarten teacher. What is best

for your child is to keep him in preschool. You will need to talk to the nurse

or counselor to start a 504 plan for medical reasons that way he can miss

days and not be retained. In Texas, kindergarten is very academic so it is

essential they get to 1st grade reading, writing, have skills in math, besides

social skills, and fine motor skills. Talk to the teacher and make her aware of

your concerns and be prepared to fight for your son. I have had to do it. My

daughter has had some teachers with no common sense. Since my daughter does

not show an illness they think there is nothing wrong. I have talked to these

teachers and made them aware they will respect the 504 plan and will provide

the education for my daughter. Teachers sometimes care about results because

that is how we are measured. We are measured by attendance and test scores so

sometimes teachers forget what is important in the lives of our children. So

sad to say.

Hope this helps.

o Salas

January 17, 2006

Hi Tasha,

I am sorry to hear of Elijah's ongoing problems. My son was 4 when he was

diagnosed with systemic onset, he is now 8 years old and in the 3rd grade. We

live in land - and preschool wasn't required prior to Kindergarden. Is it

required where you are? If required, I would work with the school so they could

provide assistance in helping Elijah keep up, and have him in school when he

feels well enough. With that said, my situation was a little different - though

preschool wasn't required & my son started Kindergarden 3 months before he

turned 5, he was in a preschool/daycare setting as I had to work, as a single

parent. There were many days he went to daycare when he wasn't feeling 100% -

and many days when half way through the day, I would be called to come and pick

him up - sometimes when he'd been feeling fine that morning, sometimes when he

wasn't. That was in the early days after onset, when were working with IV meds

and raising the po steriods and other meds to get to a level that had him well

controlled. After that - for the next few years Robbie was either nearly 100%

and going to school - or entirely too ill - unable to walk, fever over 104/105

and basicly unable to move, peirod. His flares would come on fast and furious -

so there was never any question. When well, he went to school - when sick, he

didn't. But, we often picked up school work - and once the IV meds started

kicking in, he was making up school work to stay caught up. This was as big a

concern for him and it was for me. Once, when on our way for him to be

admitted, he told me we had to stop by the school and get his work, because he

didn't want to get behind in math. So, in spite of missing many school days,

with at least 2 admissions per school year (if I am looking back and counting

correctly) - there were some admissions that occurred in the summers - so I may

be a little off count.

Things have been quite different, however this school year. No big flares

(knock on wood) - no fevers, no rashes - no hospitalizations thus far - but in

many ways it has been the most trying school year so far. He continues to do

well in school, and the school continues to work with us without problems, but

this year is the first that the Arthritis has made a daily impact on school.

Last year was nearly like that - with a lot of complications creating problems

that went on log term - but this year his ongoing back pain has presented major

problems in his getting to school on time in the morning. this impacts his

school work and my work hours. With that said, he has missed very few days this

year - he knows once the meds kick in, he needs to be in school to stay caught

up - and most days when he goes in late by the time he does go in he feels

pretty good. There are days that he would rather stay home - but we have

discussed at length that when able to participate - he needs to, the days away

from school have to be reserved for when he really can't function at all - or

is in too much pain. I keep him home when it is obvious he is going to have

difficulty getting around - and when he is unable to sit for any time at all

without pain. When it isn't so bad, he can go to school, and get up and move

around when necessary to keep the pain and stiffness at bay. he is also able to

go to the school nurse whenever he feels he needs to - and can lay down and rest

there. He also knows that at any time the school nurse will call me and i will

come and pick him up if necessary - she always calls me when he has been in her

office - to let me know, and often he and I talk and determine if he needs me to

come and get him.

Oh - my long and rambling responses! I don't know if this has been any help -

but I took a very long time to tell you that with us it's a day to day call -

sometimes it's an easy call to make, other times not so easy. But taking Robbie

out of daycare/preschool and later school entirely hasn't really been an option

for us. But, I don't hesitate to keep him home when needed - and I expect &

receive support from the school, not grief. The days that I have taken Robbie

to school and expected to be called before lunch to pick him up, I haven't been

- and other days when he was fine in the morning - I am on my way to get him.

It's a hard call to make. There are a lot of benefits to preschool - the

socialization, preparing for the classroom environment, etc - but maybe keeping

Elijah home is the best answer for you - and hopefully things will improve by

the new school year.

You will be able to sort it all out, and find the right choice to make for

Elijah. I hope that he feels better quickly!

Val

Rob's mom (8,systemic)