Re: (unknown)

June 29, 2006

> This was about the time when I became frustrated with the continual viral

diagnosis. It can drive you insane - I know it firsthand. My daughter is 22

months old and we went to see a pediatric rheumatologist in April which is where

the term was mentioned to us for the first time. So we are only two months

into this amd we have learned so much from this group. Just a warning, nothing

is going to go very fast. Everything takes time. Refferals take time, lab tests

take time, an affirmative diagnosis takes a long time from where we sit anyway.

They are still not sure what it is my daughter is dealing with, probable

but not sure until they rule out other genetic disorder possibilities (others in

the group can give you better info on these - I am still learning myself). At

least you have the ball rolling. You found this group. Ask questions to the

group and to your doctors. Tell others what you are going through, that way they

won't treat you like you are exposing their children to the plague during the

fever cycles. Plus you never know, they may know someone else who is dealing

with the same thing in your area as well. Those people are also great resources.

Just keep on going, know you are not alone in this. Keep an eye on the boards

here and it won't take you log to figure it out. Also, journal allthe symptoms

your daughter has - dates, reactions, major and minor symptoms - the

specialists will ask when you get there. Good luck!

Lori Rodgers

mom to

(10)

Jenna (7)

Abby (5)

(22 months and probable )

> From: Tammielee Rebel <tlrebel@...>

> Date: 2006/06/29 Thu PM 09:22:52 EDT

>

> Subject: (unknown)

>

> Hi,

> I am trying to get as much research on Pfapas as possible. My 15mth old

daughter has been getting sick every 2-3 weeks for the past 6 months and I have

been fed up with my Dr. telling me it was just a virus. I finally made him

listen and he agreed once he reviewed her chart that something is wrong. He

doesn't have any answers for me so he is sending me to Childrens Hospital in PA,

he suggested that she may have Pfapas but he isn't very familiar with it so I

have been doing research and from what I have learned it fits my daughters

symptoms exactly. I was both relieved and still upset if this does turn out to

be what is wrong. I will be glad that she doesn't have something life threatning

yet at the same time this can be so disabling to someone who has this especially

if it continues for years. If anyone has any suggestions for me during this time

I would appreciate it. I just want some answers!!!!!!!!!!!!!!!

>

> Tammielee

>

> ---------------------------------

> Sneak preview the all-new .com. It's not radically different. Just

radically better.

>

July 5, 2006

asp aut wrote:

>

> Hello,I have two kids my son is 6 with {adhd} and on the way of being

> diagnosed with Aspergers. I have been seeing alot of changes in him. He

> seem to get worse every. This was his First yr. In school and his

> teacher didn't know how or what to do for him . She made out to me that

> there was something was really wrong with him she wrote me a note home

> and said that he talked about morbid things and that he done ritual type

> motions. I cried for days. So needless to say he failed school , He is

> going to be 7 in grade " k "

Does your son have an IEP? Is he doing regular classes with a resource

room/person, or all special ed or part special ed? There is no excuse

for placing your son with a teacher who doesn't understand his

difference. And to make him pay for it by " failing " him is unfair in

the extreme. I'd ask, no, demand an IEP (Individual Educational Plan)

for your son, as mandated by Federal law, and a different classroom

placement with a teacher who knows at least a little about your son's

difference. Or who is at least willing to learn. IF there's no teacher

like that in your son's present school, the school system has to find

one for him. Period. IT's the law. Your son is entitled to the same

education that anyone else gets, tailored to his difference and in the

least restrictive environment. Settle for nothing less. The law says

your son gets this just like any other kid in school. But be ready for

a fight from your school system. They seldom do this stuff without one.

BTW, the " teacher " is wrong. There's nothing wrong with your son. He

is an Asperger's autistic person, and there's nothing wrong with that.

It's a difference in brain structure and function, not a disease, not a

mental illness. Your son's teacher needs to be told this.

> he is verbal but still very,very quite at times until

> his sister starts getting on his nerve's thin his hands go over his ears

> and he starts rocking thin he gets very mad .

The rocking is called self-stim (for self-stimulation). It's a thing a

lot of autistic people do to calm and center themselves during times of

stress. When he starts to do this, it's a sign that he's being

overloaded with sensory input. A good thing to do is to give him, if

possible, a quiet place that's his where he can go and calm down if his

sister gets on his last nerve...or starts to.

> Some times people get mad

> an aggravated at him because he want answer them .

Yeah, you get a lot of this from the NT (neuro-typical) world. They

just don't understand. He doesn't answer, probably, because to his

logical mind what they've said doesn't require a reply, so why give one?

Just tell people that he's an autistic person and tends to be

close-mouthed around all but family. If they have a problem with this,

it's their problem, not yours.

> I ted to do thing for

> him even though I know he can do it. I do it before I think.

I did this for a long time too, when our guy was first diagnosed. It's

a hard habit to break, because it comes right along with being a mom.

But you can do it, I know. Because you want your son to learn to

paddle his own canoe in the world, and that's a good place to start.

BTW, I'm Annie, in Albuquerque NM. Our guy is Louie. He's 26, has been

in assisted living for 5 years now with three roomies in a beautiful old

hacienda, works 2 part-time jobs (asst. sexton and apt. yardman), has a

volunteer gig filling bird feeders in a nature park, and a training

opportunity learning to groom and care for a horse named Rocky. When he

was diagnosed at 2.5, we were advised to put him into a home because

he'd never be a contributing member of society (he was non-verbal from

2-almost 6). Shows what they know.

Nice to meet you!

Annie, who loves ya annie@...

--

“He knows so little and knows it so fluently.” -- Ellen Glasgow

July 5, 2006

I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what is wrong with her, is she psychotic or something? And she was only 7!! As she gets

older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing

others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school

and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he

gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________

July 8, 2006

OMG DeeDee, I so live that in reverse! My

son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her

getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY

even being 7 years apart. Some days I want to run away!!!

Charlotte

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbin

Sent: Wednesday, July 05, 2006

3:55 PM

Autism and Aspergers Treatment

Subject: Re:

(unknown)

I understand what you are going through. My AS child is my middle child

who is 13, I have heard similar things re her for years. The thing is, at least

with her and the " morbid things " is that she sees things so black and

white that it is not truly morbid to her but just another " thing, topic

whatever " . We had an issue a couple months back where she made one of

those little hand games the kids play with paper to find out how many kids they

will have or who they will fall in love with etc. (where it fits on fingers and

thumbs and they count move it how many times you say and then open that flap

and read it) ANYWAY, it was in what horrific accident you would die. She had no

clue why her aunts and everyone were so upset, to her it was just like the

other games. Sometimes, it is scary. I remember before she was diagnosed crying

and being SO upset and calling her dad and stepmom asking what is wrong with

her, is she psychotic or something? And she was only 7!! As she gets older, I

can't necessarily get it across to her WHY certain things are not appropriate

but I have pretty much gotten her to understand she can't discuss them if she

doesn't see why! SO in some ways it does get better.

As far as the violence against younger sibs, mine are 7 years apart and

she knocked my 6 yr olds front top tooth into his gum on Thursday (right before

her therapist was supposed to be here too!) and I had to take him to the

dentist to have it pulled. We are working on it. Unfortunately, her emotional

age is close to his actual age so they bicker at the same level CONSTANTLY! I

am currently enjoying her being at dads for a week so have some peace. We are

working on that one in therapy I will let you know if we find something to try

that works!

Good luck and God Bless, remember, there are good moments too but the

frustration and stress goes with the territory, this board has been a blessing

to me in just knowing others go through it too and do understand!

DeeDee

mom of

Aslynne 15, NT

Elissa 13 AS, ADHD, ODD and mood disorder nos

Tynan 6 NT and soon step mom of

2, 4 and 8 yr olds who are also NT

asp aut

<asp_aut@...> wrote:

Hello,I

have two kids my son is 6 with {adhd} and on the way of being diagnosed with

Aspergers. I have been seeing alot of changes in him. He seem to get worse

every. This was his First yr. In school and his teacher didn't know how or what

to do for him . She made out to me that there was something was really wrong

with him she wrote me a note home and said that he talked about morbid things

and that he done ritual type motions. I cried for days. So needless to say he

failed school , He is going to be 7 in grade " k " his daily meds, are

concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so

aggressive to his little sister she is 4 . He got to were he was hitting

her so hard it was knocking the wind out of her .So the doc. put him on

the Tenex .

He does not

sleep very good at first the Tenex was helping but not know. He is very little

for his age he only weight about 34 lb. His skin color is very pale he is

verbal but still very,very quite at times until his sister starts getting

on his nerve's thin his hands go over his ears and he starts rocking thin he

gets very mad . Some times people get mad an aggravated at him because he

want answer them . I ted to do thing for him even though I know he can do it. I

do it before I think. Thank you for listing .

__________________________________________________

July 8, 2006

Hi Sara, I'm not bothered by your email address. It would only bother me in the event someone writes to you for more information and you try to sell it to them. (A common marketing tactic). People participating here are sick. People who take advantage of their limited energy just to make a buck are not welcome. This goes for everybody: If you are selling something, then know that this is not the place to market it. If you're here to really participate, you're more than welcome. penny Sara <satellitesab@...> wrote: I changed my mind, I am NOT leaving this group. I have as much right to share my experiences as any other person, and I am not willing to let one person with a bad attitude chase me off. But I guess I will keep my experiences to myself from now on and be a silent observer.Penny, I am sorry if you were bothered by my email address. Living pain free is my goal, it is an affirmation of sorts. Perhaps it is silly, but it is a daily reminder of where I want to be, and if it helps me get there, then use it I shall.To answer your question, my primary problem seem to be a result of systemic candida infection. Once I was able to get that under control, my other symptoms became more manageable. The supplementation, along with a total overhaul of my eating

habits, brought my serum candida levels down. At the same time, my supplements helped to specifically reduce inflammation. I still have flareups, and a whole slew of trouble spots, but I am able to carry on.Living pain free, one day at a time,Sara

July 8, 2006

"The supplementation, along with a total overhaul of my eating habits, brought my serum Candida levels down."

Well , there's a thing , Candida in serum is a life threatening condition , usually associated with end stage illness's such as AIDS & cancer with it comes a 75% Morbidity risk, the actual term for it is candidemia So you've done extremely well with your supplements .Yes I am cynical . but i'm willing to be educated , tell us specifics of your tests , How you avoid toxic overload from $250 worth of supps a month and why are you treating yourself when apparently you have a doc who tests and accepts your condition has an infectious cause ...

-----Original Message-----From: infections [mailto:infections ]On Behalf Of SaraSent: 08 July 2006 02:19infections Subject: [infections] (unknown)

I changed my mind, I am NOT leaving this group. I have as much right to share my experiences as any other person, and I am not willing to let one person with a bad attitude chase me off. But I guess I will keep my experiences to myself from now on and be a silent observer.Penny, I am sorry if you were bothered by my email address. Living pain free is my goal, it is an affirmation of sorts. Perhaps it is silly, but it is a daily reminder of where I want to be, and if it helps me get there, then use it I shall.To answer your question, my primary problem seem to be a result of systemic candida infection. Once I was able to get that under control, my other symptoms became more manageable. The supplementation, along with a total overhaul of my eating habits, brought my serum candida levels down. At the same time, my supplements helped to specifically reduce inflammation. I still have flareups, and a whole slew of trouble spots, but I am able to carry on.Living pain free, one day at a time,Sara

July 8, 2006

It is so good knowing that I am not the only one dealing with sibling issues. is eleven and Adam is eight. He goes to the kid connection meetings here in our town to be with other kids who have special needs siblings and it has really helped him deal wirh her. He wishes all the time that she could talk and play with him like a "normal" sister. He has to deal with his anger towards her cause she really makes him mad like when she tries to bite him or take his toys from him. Charlotte <scottdesigns@...> wrote: OMG DeeDee, I so live that in reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly worry about her getting hurt because she is 41lbs and he’s 144lbs! They fight CONSTANTLY even being 7 years apart. Some days I want to run away!!! Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of d corbinSent: Wednesday, July 05, 2006 3:55 PMAutism and Aspergers Treatment Subject: Re: (unknown)

I understand what you are going through. My AS child is my middle child who is 13, I have heard similar things re her for years. The thing is, at least with her and the "morbid things" is that she sees things so black and white that it is not truly morbid to her but just another "thing, topic whatever". We had an issue a couple months back where she made one of those little hand games the kids play with paper to find out how many kids they will have or who they will fall in love with etc. (where it fits on fingers and thumbs and they count move it how many times you say and then open that flap and read it) ANYWAY, it was in what horrific accident you would die. She had no clue why her aunts and everyone were so upset, to her it was just like the other games. Sometimes, it is scary. I remember before she was diagnosed crying and being SO upset and calling her dad and stepmom asking what

is wrong with her, is she psychotic or something? And she was only 7!! As she gets older, I can't necessarily get it across to her WHY certain things are not appropriate but I have pretty much gotten her to understand she can't discuss them if she doesn't see why! SO in some ways it does get better. As far as the violence against younger sibs, mine are 7 years apart and she knocked my 6 yr olds front top tooth into his gum on Thursday (right before her therapist was supposed to be here too!) and I had to take him to the dentist to have it pulled. We are working on it. Unfortunately, her emotional age is close to his actual age so they bicker at the same level CONSTANTLY! I am currently enjoying her being at dads for a

week so have some peace. We are working on that one in therapy I will let you know if we find something to try that works! Good luck and God Bless, remember, there are good moments too but the frustration and stress goes with the territory, this board has been a blessing to me in just knowing others go through it too and do understand! DeeDee mom of Aslynne 15, NT Elissa 13 AS, ADHD, ODD and mood disorder nos Tynan 6 NT and soon step mom of 2, 4 and 8 yr olds who are also NTasp aut <asp_aut@...> wrote: Hello,I have two kids my son is 6 with {adhd} and on

the way of being diagnosed with Aspergers. I have been seeing alot of changes in him. He seem to get worse every. This was his First yr. In school and his teacher didn't know how or what to do for him . She made out to me that there was something was really wrong with him she wrote me a note home and said that he talked about morbid things and that he done ritual type motions. I cried for days. So needless to say he failed school , He is going to be 7 in grade "k" his daily meds, are concerta 18mg,and 27mg. Tenex 1mg, 2 in morn, and 2 at night . He got to be so aggressive to his little sister she is 4 . He got to were he was hitting her so hard it was knocking the wind out of her .So the doc. put him on the Tenex . He does not sleep very good at first the Tenex was

helping but not know. He is very little for his age he only weight about 34 lb. His skin color is very pale he is verbal but still very,very quite at times until his sister starts getting on his nerve's thin his hands go over his ears and he starts rocking thin he gets very mad . Some times people get mad an aggravated at him because he want answer them . I ted to do thing for him even though I know he can do it. I do it before I think. Thank you for listing . __________________________________________________

July 9, 2006

I have tried to call the local ARC about

sib shops for my daughter and no one ever calls be back! Thanks for mentioning

it again, I think I will call the US supervisor tomorrow and see if I

can get somewhere.

Charlotte

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of sharon boone

Sent: Saturday, July 08, 2006

11:57 AM

Autism and Aspergers Treatment

Subject: RE:

(unknown)

It is so

good knowing that I am not the only one dealing with sibling issues.

is eleven and Adam is eight. He goes to the kid connection meetings here

in our town to be with other kids who have special needs siblings and it has

really helped him deal wirh her. He wishes all the time that she could talk and

play with him like a " normal " sister. He has to deal with his

anger towards her cause she really makes him mad like when she tries to bite

him or take his toys from him.

Charlotte <scottdesigns@...>

wrote:

OMG DeeDee, I so live that in

reverse! My son is 12 ½ (aspie) and my daughter (nt) is 5 ½, I constantly

worry about her getting hurt because she is 41lbs and he’s 144lbs!

They fight CONSTANTLY even being 7 years apart. Some days I want to run

away!!!