RE: New to list-glad for any helpful info or advice

[Guest guest]

Hi, a. First of all, welcome to the list. Sorry you need to be here,

but you will find a wealth of info and support. I am sure more will be

chiming in soon. Now, in my opinion, you probably do not need to wait

for a diagnosis. As you may know, there are kids who go months and years

before they get the proper one. My son was 7 months of tests, drs, ct

scans, etc before being diagnosed. Talk with school and set up an IEP

plan. This will allow him certain things while still attending school.

Some kids here are home schooled, as it is easier for some kids that

way. I do not know a lot about the school plans, as my kids went to

private school and things are a bit more informal, but there is lots of

info on those plans in past posts and I am sure someone will chime in

with more info. For my son, I simply went in and spoke with the teachers

and he was excused from gym unless he felt comfortable doing it, and

they were aware we were trying to deal with the problem. Once diagnosed,

his teachers would allow him to rest if needed (he never did that as he

was 13 at the time and did not want to be different) stay out of gym

until he could keep up, which with the physical therapy was not too

long, and they were completely tolerant of frequent dr visits. Very

flexible and helpful. I would talk with the school, explain what is

going on, and work on something to help your son keep up with the class.

My sons ankles were the first things affected as well. Makes it very

hard to walk and run I know. I hope my post helps somewhat and I am sure

someone with more experience on the school plans can give even better

info. Good luck and post whenever you need to and ask questions. You

will learn a lot here! Michele ( 17, pauci & spondy)

New to list-glad for any helpful info or advice

Hello,

My name is a and I live in north central Texas. Just before our

school year began my 6 yr old son began showing symptoms of JRA. By

the end of August his ankles were so badly swollen that he was

unable to walk. We were able to get to see a Rhuematologist at the

ish Rite Hospital for a prelimary exam. We are now scheduled

for an MRI at the end of this month.

He seems to have all the symptoms for Dermamyositis but I guess at

the time the diagnosis is not official. He has complained twice

about his vision and in his particular type of JRA he could have

trouble swollowing.

My current frustration is the school district. Although the swelling

has gone down he still tiptoes around rather than walking flat

footed. The school is being rather insistant that he return even if

for only half a day. When I spoke to the doctor at the exam she told

me to tell the school that he was being evaluated and that I would

need to get his books from the school. THe school counselor (who

tells me she once worked at ish Rite) tells me they dont

understand school policy.

I am in the process of getting him set up for the homebound program,

if not for the immediate use then for an " as needed " basis.

He has missed 2 weeks of school and they are essentially threatening

me with legal action. This makes me want to keep him home all the

more. I had wanted to wait until I had the full diagnosis to send

him to school but wonder if that is necessary.

I know I am an over protective mom so feel free to be straight with

me.

Thanks,

a

[Guest guest]

After re-reading my post, I realize I should have added that you need to

do what is best for your son. If he is in a lot of pain, and not on any

meds to help with it, you may need to keep him home, or only going half

days. Is your son on any meds yet? Michele

New to list-glad for any helpful info or advice

Hello,

My name is a and I live in north central Texas. Just before our

school year began my 6 yr old son began showing symptoms of JRA. By

the end of August his ankles were so badly swollen that he was

unable to walk. We were able to get to see a Rhuematologist at the

ish Rite Hospital for a prelimary exam. We are now scheduled

for an MRI at the end of this month.

He seems to have all the symptoms for Dermamyositis but I guess at

the time the diagnosis is not official. He has complained twice

about his vision and in his particular type of JRA he could have

trouble swollowing.

My current frustration is the school district. Although the swelling

has gone down he still tiptoes around rather than walking flat

footed. The school is being rather insistant that he return even if

for only half a day. When I spoke to the doctor at the exam she told

me to tell the school that he was being evaluated and that I would

need to get his books from the school. THe school counselor (who

tells me she once worked at ish Rite) tells me they dont

understand school policy.

I am in the process of getting him set up for the homebound program,

if not for the immediate use then for an " as needed " basis.

He has missed 2 weeks of school and they are essentially threatening

me with legal action. This makes me want to keep him home all the

more. I had wanted to wait until I had the full diagnosis to send

him to school but wonder if that is necessary.

I know I am an over protective mom so feel free to be straight with

me.

Thanks,

a

[Guest guest]

a

My 11 child has been diagnosed with Dermatomyositis and we are in

South Texas. We have often thought of going to ish Rite for

evaluation. We met a couple from Hurst that goes to ish Rite

and their child has Dermatomyositis.

The ARD (Admission, Review and Dismissal) unfortunately is something

that you must go through to make sure your child gets a free,

appropriate education in the least restrictive manner. The ARD is

intended to provide a common understanding for parents, school

personnel, and communities, of the process by which an IEP

(individual education plan) is developed for a student with

disabilities.

Your child should qualify under OHI (other health impaired) which is

due to a chronic illness that affects strength, alertness, etc. This

is all part of the federal law of IDEA (Individuals with Disabilities

Education Act)

As several have told you, a diagnosis could take several months. As

my child exhibited symptoms for 8+ years before we had a good

diagnosis this summer of the Dermatomyositis. You should feel

blessed that you are seeing the right doctors that will get to the

bottom of this.

If you feel you are not getting the right treatment at the school go

up the ladder. You should be talking to the special education

coordinator for the school. Counselors are great; however it is the

special education coordinator that should be handling this. Check

out the Texas Education Website under special education for your

rights.

Always when talking to the school remind them that their education is

important to you and you are willing to work with the school

district. Make sure you have everything in writing to prove you are

working with them. If they are threatening you with lawsuit

documentation is very important

Sadie missed over 40 days of school at the end of last year due to

her health, and all that time we did not have a good diagnosis.

However, they were very understanding and started homebound

services. However, there has been a lot of agony during these ARD

process also. If they child can't go to school and function they

the child should not be at school.

Also, there is in June Jambalaya Jubilee in Shreveport LA that many

of the patients of ish Rite goes to. It is a Rheumatic Disease

Family Retreat that some of the doctors at ish Rite speak at.

If you would like to speak of the board further about the ARD

process, let me know.

Jeanine

[Guest guest]

Hi a,

I'm so sad that you are having a hard time with your son right now,

and compounding the pain and aggravation with waiting for formal

diagnosis and school issues. I have not had problems with our

school, so no help there. There is at least one other family on

this list that goes to ish Rite. Hopefully they will chime in

here and offer their wisdom/experiences.

Welcome to this wonderful place and I hope you get your answers.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

-a,,

I know im late in responding but i just wanted to tell you that it

makes me so sad tor ead of your plight with the school, like dealing

with your sons disease is not enough.

I would make a formal request to the school and get the wheels in

motion for a IEP to do written for him. He will need accomadations

in school and i think its very short sighted of the counceller not

to see this.

I hope you start to get more positive help from the school. its in

your sonsbest interest for the school to help in any way they can

and I am horrified that they are making this so difficult for you.

HUGS..

Again, it makes me very grateful for all the help my sons school has

given, all on their own.

Good luck and let us know how it goes..

HUgs Helen and (7,systemic)

> Hi a,

>

> I'm so sad that you are having a hard time with your son right

now,

> and compounding the pain and aggravation with waiting for formal

> diagnosis and school issues. I have not had problems with our

> school, so no help there. There is at least one other family on

> this list that goes to ish Rite. Hopefully they will chime

in

> here and offer their wisdom/experiences.

>

> Welcome to this wonderful place and I hope you get your answers.

>

> Stacia and Hunter 8 systemic, iritis