Hello!

May 19, 2007

God bless You Doris!

Aren't you doing a beautiful job. I know we're going to hear interesting things from you. sounds like quite a neat kid.

Love,

Francine

In a message dated 5/19/2007 12:07:35 A.M. Eastern Daylight Time, f5survivor5399@... writes:

Thanks for letting me join your group. Let me tell you a bit about myself and my Aspy, . is the "love child" of my son, Steve and . He is now 11 years old.

I was 's main caregiver all of his life and the school and I had told his Mom on numerous occasions that there was something wrong with this child. She refused to believe it. In Dec 2004 was drunk and had a wreck with an open container in the car. was in the car and asked the highway patrol to please call his Grandma and Paw-paw to pick him up "because they love me." I got temp custody and then permanent custody of . has never attempted to get him back.

Last Thanksgiving week-end she had him for a visit. heard a noise and opened her bedroom door and she was having sex with a man did not know. He called the Police in the town where she lives which is about 75 miles from me. He told his Psychologist about it and she called Child Protective Services who told me to not let him be alone with his Mom or visit her until DHS could do an investigation. Neither of us have heard from them and he has seen his Mom 3 times since Thanksgiving. She rarely calls and does not pay her Court Ordered Child Support of $75.00 a month.

has been tested by various people who indicate his IQ is 74, 88 or 124. He is creative, writes pretend radio shows where he is the DJ, the announcer, the singer etc. He invisions himself as a Southern Gospel Music Singer; he sings solos about every 6 weeks at Church. He rarely goes outside to play. He would rather stay inside and sing or check out info on the computer. He shares info with me that he finds interesting, like "Bob Barker is 83 years old." He is currently on Adderall CR, Low dose Adderall and Risperdol. He will be in Middle School in the fall, which I find scary but the personnel at both schools try to assure me that he will be fine.

I am 70 years old and my husband, Don who is 71 has Mild Alzheimers. Sometimes he and lock horns and I refer to them as my "4 year old twins".

I live in Del City, OK a small suberb of OKC. I do have a very good support group of friends from Church.

I'm looking forward to hearing about you and yours.

Doris Mann aka GR

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May 19, 2007

Doris. Sounds like you are an incredible lady with a lot on her plate.You are definitely loving and in-tune with your grandson and he is very lucky to have you. As far as him going to school - I gotta say that you should talk to anyone and everyone you can, there. Let them see you,,,,know you and trust you. The more they know of you and that you are a caring person who wants to learn and get the best for her grandson,,,,,they will, hopefully, care more for him as well. Good luck. You are doind an incredible thing. Keep us posted. RobinGR <f5survivor5399@...> wrote: Thanks for letting me join your group. Let me tell you a bit about myself and my Aspy, . is the "love child" of my son, Steve and . He is now 11 years old. I was 's main caregiver all of his life and the school and I had told his Mom on numerous occasions that there was something wrong with this child. She refused to believe it. In Dec 2004 was drunk and had a wreck with an open container in the car. was in the car and asked the highway patrol to please call his Grandma and Paw-paw to pick him up "because they love me." I got temp custody and then permanent custody of . has never attempted to get him back. Last

Thanksgiving week-end she had him for a visit. heard a noise and opened her bedroom door and she was having sex with a man did not know. He called the Police in the town where she lives which is about 75 miles from me. He told his Psychologist about it and she called Child Protective Services who told me to not let him be alone with his Mom or visit her until DHS could do an investigation. Neither of us have heard from them and he has seen his Mom 3 times since Thanksgiving. She rarely calls and does not pay her Court Ordered Child Support of $75.00 a month. has been tested by various people who indicate his IQ is 74, 88 or 124. He is creative, writes pretend radio shows where he is the DJ, the announcer, the singer etc. He invisions himself as a Southern Gospel Music Singer; he sings solos about every 6 weeks at Church. He rarely goes outside to play. He would rather stay inside and sing or check out

info on the computer. He shares info with me that he finds interesting, like "Bob Barker is 83 years old." He is currently on Adderall CR, Low dose Adderall and Risperdol. He will be in Middle School in the fall, which I find scary but the personnel at both schools try to assure me that he will be fine. I am 70 years old and my husband, Don who is 71 has Mild Alzheimers. Sometimes he and lock horns and I refer to them as my "4 year old twins". I live in Del City, OK a small suberb of OKC. I do have a very good support group of friends from Church. I'm looking forward to hearing about you and yours. Doris Mann aka GR It's here! Your new message!Get new email alerts with the free Toolbar.

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May 29, 2007

Thank you Francine for your kind words. I wish that I had joined this group when was first diagnosed with Aspergers; I have been inundated with this child's needs, academacally, physically, mentally, emotionally and every other which way but loose. His Elementary School has basically been very supportive of and myself.They were very into "No Child Left Behind Program." I got the homeroom mother of the year at the awards assembly last week. LOL I was at the school, or on the phone to the school at least once a week and at least 1/2 of the students and faculty knew that I was 's Grandma. Our school district is restructuring this coming school year. They are going from Jr High for grades 7, 8 and 9 to Middle School for grades 6, 7 and 8. Its scary to think of him in Middle school but I have met his Counselor and one teacher; they along with his teachers, principle and office

staff have tried to assure me that he will do fine. I pray they are correct! Last week was a rough one for ; they did no formal school work and were basically just making up days they missed during the ice storm we had for a week last Winter. does very well in structured but the looseness of last week left him confused, axious etc. I hope to be an active member of thius group. Doris M in OK sunrose101@... wrote: God bless You Doris! Aren't you doing a beautiful job. I know we're going to hear interesting things from you. sounds like quite a neat kid. Love, Francine In a message dated 5/19/2007 12:07:35 A.M. Eastern Daylight Time, f5survivor5399 writes: Thanks for letting me join your group. Let me tell you a bit about myself and my Aspy, . is the "love child" of my son, Steve and . He is now 11 years old. I was 's main caregiver all of his life and

the school and I had told his Mom on numerous occasions that there was something wrong with this child. She refused to believe it. In Dec 2004 was drunk and had a wreck with an open container in the car. was in the car and asked the highway patrol to please call his Grandma and Paw-paw to pick him up "because they love me." I got temp custody and then permanent custody of . has never attempted to get him back. Last Thanksgiving week-end she had him for a visit. heard a noise and opened her bedroom door and she was having sex with a man did not know. He called the Police in the town where she lives which is about 75 miles from me. He told his Psychologist about it and she called Child Protective Services who told me to not let him be alone with his Mom or visit her until DHS could do an investigation. Neither of us have heard from them and he has seen his Mom 3 times since Thanksgiving. She

rarely calls and does not pay her Court Ordered Child Support of $75.00 a month. has been tested by various people who indicate his IQ is 74, 88 or 124. He is creative, writes pretend radio shows where he is the DJ, the announcer, the singer etc. He invisions himself as a Southern Gospel Music Singer; he sings solos about every 6 weeks at Church. He rarely goes outside to play. He would rather stay inside and sing or check out info on the computer. He shares info with me that he finds interesting, like "Bob Barker is 83 years old." He is currently on Adderall CR, Low dose Adderall and Risperdol. He will be in Middle School in the fall, which I find scary but the personnel at both schools try to assure me that he will be fine. I am 70 years old and my husband, Don who is 71 has Mild Alzheimers. Sometimes he and lock horns and I refer to them as my "4 year old twins". I live in Del City, OK a small suberb of OKC. I do have a very good support group of friends from Church. I'm looking forward to hearing about you and yours. Doris Mann aka GR It's here! Your new message!Get new email alerts with the free Toolbar. See what's free at AOL.com.

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May 30, 2007

Dear Doris, I am very much inspired by your writings. I also live in

Oklahoma near the town of Oilton halfway between OKC and Tulsa. God

bless you and thank you for sharing with us. Jodi

June 6, 2007

Welcome, . I have two boys with Shwachman-Diamond Syndrome here is a

link to our family website, if interested: www.shwachman.50megs.com

<http://www.shwachman.50megs.com/>

My boys used to get IVIG and last year started on SCIG (subcutaneous IG).

They had awful side-effects from IVIG and have not had any on SCIG. I've

got pictures of them on the website and info about SCIG.

You'll find lots of info here.

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

June 6, 2007

Welcome, !

My daughter had the same reaction after her first IVIG. They ran it too fast

and the product did not " agree " with her. Please make sure that you are logging

the product, reactions, expiration date, lot number, etc. Every time.

There was a biologic withdrawl notice by ZLB Behring for Carimune NF lot

43017-00016 with exp. 11/26/09. If you need help, call: 1888-update-u

Hope your son starts to feel better soon.

mom to 5 y.o. CVID

Hello!

Hello everyone! Boy am I glad I found this site.

My son has recently been diagnosed with Selective IgG Defiency. I

thought we were all alone out here. There are no other children in our

town on IVIG.

He has been taking IVIG since Feb. It was horrible at first, he got

aseptic meningitis(sp) everytime. Last month in the hospital they gave

him a treatment of 40 grms of Carimmune over eight hours, and no side

effects! We now go every three weeks outpatient at the hospital for 10

hrs and have had 3 treatments with no side effects. YIPEE! I can see

the light at the end of the tunnel.

Just wanted to introduce myself and say Hi!

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July 9, 2007

Hi Faith,

I'm really glad you are doing the research on your own! That's great.

It's also great that your doctor is looking at all the possibilities,

including Stills disease. As far as how long a diagnosis can take,

well, that varies. It took 6 years for me, some on here as long as 20

years, and some a couple of months. It really depends on your doctor

and what they have seen and know.

Many people's tests show nothing wrong - including mine - thus making

any diagnosis difficult. Stills becomes a diagnosis of exclusion at

that point due to the fact that it's not Lupus and it's not RA as they

have definitive tests.

Keep up your search. In the meantime, what meds does the doc have you

on?

Houston, Texas

July 9, 2007

Hi Faith,

I am and I live in western NC. I am a nursing student, married, with a

two year old son. I was diagnosed with Still's over ten years ago when I was

24 years old. I also had a hard time getting a diagnoses. Just wanted to say

Welcome.

</HTML>

July 9, 2007

Hi Faith,

I am and I live in western NC. I am a nursing student, married, with a

two year old son. I was diagnosed with Still's over ten years ago when I was

24 years old. I also had a hard time getting a diagnoses. Just wanted to say

Welcome.

</HTML>

July 9, 2007

Hello Faith,

My name is and I am also from Missouri. I was diagnosed after four

months of tests and procedures....that was nine years ago now. Glad you found

the group. I was a social worker before I became dsabled and my husband is a 25

year veteran of the Branson Fire Department. I have one daughter who had just

turned four when I was diagnosed at the age of 26. Just wanted to introduce

myself and welcome you to this group. Even though you haven't been officially

diagnosed yet, I pray that you have some answers soon. The feeling of not

knowing what is wrong is probably the worst part of it in the beginning. Hang

in there...and keep the faith! (Sorry...bad pun)

Stay Healthy

Palmer

Faith Holt wrote:

Hello, my name is Faith Holt from Missouri. I haven't been officially

diagnosed with Still's yet. My rheumatologist seems hesitant to go ahead. My

rashes and symptoms are very similar to a lot of things but all of the blood

tests are coming back negative. The last visit he mentioned Still's and so I

started my research. I am at a loss and totally exhausted and feeling very

alone. Sometimes I wish it were something easier to diagnose so that I would

have something definite. I am going to post some pics of my rashing. I feel

tired all of the time, I hurt and ache so that I don't want to get out of bed. I

laugh and tell my husband that I'm 26 but feel like I'm 80. The flare ups come

and go. I wonder how long it typically takes to diagnose and if there is

anything specific they look for? Anyway, back to the basics, I have two

wonderful step-sons that we have full custody of and two beautiful daughters. I

sell real estate and my husband sells cars. Thank you for

the e-mails I have already received! Faith Holt

---------------------------------

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July 9, 2007