MY INTRODUCTION

December 14, 2006

*******Hi Colleen, welcome to the group. I have a 14 year old son

diagnosed with Asperger's, OCD, Tourettes. I can see why you are

concerned about next year, as that is a very large kindergarten class. I

wouldn't go with the first Psychologists suggestion as 'needs being

mild'. The problem being, mild now, can escalate quickly to a bad

situation, especially with 25 kids in a class. Tell the school you are

very concerned, and ask for further testing by a Neuro-Psychologist.

With this type of testing your son's strengths and weaknesses will be

more apparent. Some schools will pay, some won't, the cost being

around$1,800.00 A more specific diagnosis would be good, so that someone

at the school can work out a plan possibly involving a behaviorist as

you mentioned. Even if he isn't eligible for an IEP, he most certainly

would be for a 504. My son was almost 10 before the As. diagnosis. He

was a very sweet child, so much got missed. In his case there was " too

little, too late " . We removed him from Public School when he was 10

(middle of 5th grade)for the sake of his mental health. He is doing

well. However, he would do well in a school, as he loves to learn, if

classes were small and organized differently, than they are at most

Ps.'s..... Today we had a pool table installed and we had a great time

playing. One of the liberating aspects of Home School, among many

others. See what the system can do for your son first, but don't wait

till he crashes to move on if necessary. If kindergarten is all day, I

would suggest going half days if possible. Take care, Gail A.

Hello,

My name is Colleen, and I'm the mom to 2 terrific children: a 10

year old girl and a 4 year old boy.

We had him observed by the school's " Project

Find " psychologist, and evaluated for special needs. His issues were

deemed to be mild, and didn't qualify him

for extra help. There was some talk of possible Asperger's then.

the

school system really doesn't know what to do with him because he

seems to need some help, but doesn't qualify for special assistance

yet from them

December 14, 2006

Colleen, RED FLAG - HUGE RED FLAG!!! Have you had a private evaluation yet for him? Your child, if he has aspergers, needs to have an IEP in place - even if there are only very small modifications made. This is something that I have struggled with - and reminds me of my daughter (who is now 15), in kindergarten I repeatedly asked that she be evaluated - there idea of an eval at that time was an overall achievement test - which she tested low on but not in need of assistance. HOWEVER - this year I finally got her autism team services (her diagnosis is Aspergers, PTSD, Possible Mood Disorder- may just be the AS, and possible OCD - also may be part of the AS), when her OT and the Speech and Language Therapist (btw she graduated from speech in third grade initially) have her as markedly impaired - in other words, if there had been early intervention - (and not from lack of dragging her to doctors) she would be almost

undetectable - however, she is VERY low functioning Aspie - almost no skill whatsoever in decoding non verbal behavior - resulting in a physical and a sexual assault at the middle school last year, complete inability to have a give and take conversation in regards to something that she isn't into etc etc.,, Thank GOD for the Speech and Language Therapist they brought in from another school to work with Molly - she works exclusively with Aspies and HFA kids - and is amazing - she shadows her periodically, found a volunteer (a teacher) to meet with her several times a week to assist with organization, AND has put together packets for each and every teacher on what AS is. So, for the first time ever, the school understands that yes, she doodles in class - she does this because it is VERY difficult for her to concentrate on the subject AND attempt to make eye contact. Also - she called her art teacher a b@@ch the other day, I wasn't

notified because they called the School Psych and her case handler and they were over there in a flash - turns out Molly was thinking it - and didn't even realize that she had said it out loud. Bottom line -? My Aspie is lower functioning than my Autistic child - I would honestly persue finding a developmental psychologist and walk in there saying do every single test that you can think of - have the school copied on it. Sorry if this seems forceful - I am the mom of four special needs kiddos - and I have had to fight for every single thing - the school has gotten excellent over the years though lilies@... wrote: *******Hi Colleen, welcome to the group. I have a 14 year old sondiagnosed with Asperger's, OCD, Tourettes. I can see why you areconcerned about next year, as that is a very large kindergarten class. Iwouldn't go with the first Psychologists suggestion as 'needs beingmild'. The problem being, mild now, can escalate quickly to a badsituation, especially with 25 kids in a class. Tell the school you arevery concerned, and ask for further testing by a Neuro-Psychologist.With this type of testing your son's strengths and weaknesses will bemore apparent. Some schools will pay, some won't, the cost beingaround$1,800.00 A more specific diagnosis would be good, so that someoneat the school can work out a plan possibly involving a

behaviorist asyou mentioned. Even if he isn't eligible for an IEP, he most certainlywould be for a 504. My son was almost 10 before the As. diagnosis. Hewas a very sweet child, so much got missed. In his case there was "toolittle, too late". We removed him from Public School when he was 10(middle of 5th grade)for the sake of his mental health. He is doingwell. However, he would do well in a school, as he loves to learn, ifclasses were small and organized differently, than they are at mostPs.'s..... Today we had a pool table installed and we had a great timeplaying. One of the liberating aspects of Home School, among manyothers. See what the system can do for your son first, but don't waittill he crashes to move on if necessary. If kindergarten is all day, Iwould suggest going half days if possible. Take care, Gail A. Hello,My name is Colleen, and I'm the mom to 2 terrific children: a 10 year old girl and a

4 year old boy. We had him observed by the school's "Project Find" psychologist, and evaluated for special needs. His issues were deemed to be mild, and didn't qualify him for extra help. There was some talk of possible Asperger's then. the school system really doesn't know what to do with him because he seems to need some help, but doesn't qualify for special assistance yet from them "I want to be part of the solution. Not part of the agonizing, grinding, boring complacent problem..."

Henry Rollins; From "I hate U2"

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Answers.

February 14, 2007

Hi Greg! We also live in Little Rock. Our son was recently diagnosed at

the age of 3 at ID at Children's. He has had the fevers for almost 2 years and

has leg and foot pain, mouth ulcers, easy bruising and swollen nodes with this

disorder. He has the same results with the prednisone. His fevers went from once

every 4-6 weeks to every week. This lasted for almost 6 weeks. Just when we were

about to quit the prednisone, his fevers slowed down drastically. He hasn't had

a fever in 6 weeks now. We went to ID at Children's yesterday and were told that

the battery of test that were done were completely normal. This groups has been

so great for me. I can read what other parents are going through and am often

relieved by the similarities. From what you've shared, our situations are

extremely similar. Feel free to email me personally to get my phone number. You

are not alone!

God Bless,

Futterer

3/1/2-

Alayna 2

Ean 7 months

My introduction

Hello!

I am a new member of the group and wanted to give a brief introduction of

our family, our and our situation.

(2nd child) was born in 2002 from a healthy pregnancy. No issues at

birth, a standard vaginal delivery. He was breast-fed and really didn't have any

health concerns other than a mild cause of reflux, which was treated with

Zantac. As far as family background, my (father) history is pretty clean.

However, my wife's family has a history of autoimmune disorders. Her father had

multiple sclerosis and her grandmother had lupus.

Right around our son 's 3rd birthday, he would start running periodic

high fevers, around 105, that would last for around 4-5 days. He would be

lethargic during this time but really didn't have any other symptoms. Tylenol

and Advil would knock the fever down, but never enough to really do anything.

Our pediatrician just said it must be some kind of virus that he must be picking

up from preschool. This went off and on for several months, my wife and I were

getting worried since we were constantly having to take off a week of work

regularly due to his fever, plus worried about the drain it was putting on

. Once we started tracking it, we realized the onset of the fever was

almost exactly every 28 days. With my wife's family history, she was very

concerned about the possibility of auto-immune diseases. Our pedicatrician then

referred us to an Infectious Disease doc at Arkansas Children's Hospital, where

she came up with the diagnosis of . This was

around a year, when was 4 years.

We began treating with prednisolone, 10 mg would seem to knock out the fever in

about an hour. My wife was leary of treating with a steriod, since she had seen

the long-term effect it had on her dad in his treatment for MS. After talking to

a lot of experts (docs, pharmacists, etc.), and realizing it was a small,

infrequent dose, we went ahead with the treatment.

Lately the re-occurence of his fevers has gotten closer to 18 days. The amazing

thing to us is that knows about the onset before any symptoms (fever)

appear. He will be playing and be totally fine and then he will come up and sit

on one of our laps, put his head on our shoulder, and say, " I'm going to need my

magic medicine " (which is what he calls the prednisolone. ) Sure enough, within

about 10-20 minutes, you can just feel his body starting to heat up and his temp

will hit 104 in less than an hour. A dose of " magic medicine " and he's back to

normal.

We just returned to the ID doc, where she drew a bunch of blood to test a myriad

of things. We're still waiting for the results from these tests. We are

contemplating a tonsillectomy, but are waiting for the results of the tests

before we see a pediatric ENT.

That's pretty much our story in a nutshell (although it seems like a pretty big

nut!) I look forward to being part of this group!

Keep us in your prayers!

Greg Warren

Little Rock, Arkansas

February 15, 2007

Hello, I read your intro and it amazes me as to how many people continue with

the prednisolone. The only reason I say this is because my son's Dr. at

Chidrens Medical Dr. Wasserman (Immunoligist) in Dallas told us that he did not

really want to continue with the steroid since in knock the fever down pretty

quickly. He said that since it did that he was sure it was and gave us

choices about treatment. Continue with the steriod, tylenol and motrin or a

tonsillectomy. I ask him which one he recommended and he said T & A.

We had the T & A and now no fever. Ive said this in the past Cade still has

some foot pain or hot feet every once in a while but no fevers. Yeah. But I am

just curious why some docs say take the steriod and some don't. Also, should I

take him to a Rhemutologist sorry spelling.

Leanne

Cade 4 yrs & no fevers for 4 months.

Waxahachie, Texas

Warren <gwarren25@...> wrote: