Introduction

October 11, 2004

OHH and by the way if your crazy we all must be crazy on here as we all seem

to be going through similar symptoms

regards again

October 11, 2004

OHH and by the way if your crazy we all must be crazy on here as we all seem

to be going through similar symptoms

regards again

November 11, 2004

Hi, ! Thanks for your reply. RDI stands for Relationship

Development Intervention. This is a new kind of therapy (as I

understand it you actually do a lot of it at home) that focuses on

helping the child develop the motivation and skills for having social

relationships rather than on developing academic type skills.

I am considering it for Emma, but am trying to find out more about.

Since it is relatively new, there is not as much research done on it

as there has been on ABA for instance and so I am looking for people

who have tried it.

November 14, 2004

What is RDI?

My son is autistic, and 2 yrs old. We don't do special diets, but have noticed

that a lot of autistic kids have gastro reflux... I've heard a lot about the

gfcf diet, but with my son loving stuff that is a no no on it, it's not an

option...

Good luck in your search...

Ang

>

> From: " lauren_koertzen " <lauren_koertzen@...>

> Date: 2004/11/10 Wed PM 11:19:30 CST

> Autism and Aspergers Treatment

> Subject: Introduction

>

Faith sees the invisible, believes the unbelievable, and receives the

impossible. - Corrie Ten Boom

Faith's role is to grasp that which appears impossible or strange to human eyes.

- Murray

I believe in Christianity as I believe in the sun- not only because I see it,

but because by it I see everything else.- C. S.

Some never get started on their destiny course because they cannot humble

themselves to learn, grow, and change. - Cast Treat

Hi!

I have a 38 month old daughter who is being evaluated by

professionals and is likely going to receive an autism or pdd dx. I

also have a 22 month old son who is not yet saying words but

otherwise appears to be developing normally.

I am investigating the type of therapies available for autism and

specifically would like to know if anyone has tried:

1. Special Diets?

2. RDI?

Also, I am moving to Olympia, WA shortly and would like to know if

there is anyone on the list in that area who might be willing to

share what they know about schools, doctors, therapists, etc.., in

the olympia area.

Thanks,

November 16, 2004

Really...wow...thats why my son has heartburn. I didn't know that! Could you please send me more info on heartburn/reflux for autism if you have it. Greatly appreciated.

The Hitchcocks

Introduction> > Faith sees the invisible, believes the unbelievable, and receives the impossible. - Corrie Ten Boom Faith's role is to grasp that which appears impossible or strange to human eyes. - MurrayI believe in Christianity as I believe in the sun- not only because I see it, but because by it I see everything else.- C. S. Some never get started on their destiny course because they cannot humble themselves to learn, grow, and change. - Cast Treat

December 2, 2004

,

I don't have a long time to write right now but I just wanted to let

you know that our daughter who is now 5 years old started out with

fever only. No mouth sores, etc... just fever. She gradually added the

other symptoms about a year or more later.

We've had all the genetic testing done and the Dr. is pretty

comfortable with diagnosisng her with now. We are planning on

trying prednisone for the first time if she had another fever.

Tracey

mom to Maddie, age 5

Brent, age 9

League City, TX

On Thursday, December 2, 2004, at 08:26 AM, wrote:

>

> My name is and our daughter, Eva, (born May 2003) has been

> having high fevers (every 2-3 weeks) for the past 6 months. After the

> 8th " episode " I was FINALLY able to convince the pediatrician to

> order some blood tests. Eva has a high sed rate (49) and we were

> referred to a pediatric rheumatologist. Although her symptoms don't

> match periodic fever symdrome exactly, he suggested that we go ahead

> with some genetic testing. (Eva is 18 months, and only beginning to

> talk, so we have no way of knowing if she is suffering other

> symtptoms that she's not able to communicate to us.) We're waiting

> for approval from the insurance company for the genetic testing, and

> will plan to re-test the sed rate, as well.

>

> Our daughter also has delayed gross motor skills (very slow to learn

> how to crawl, stand, etc.) and she has physical therapy. Although

> the rheumatologist said that it's not related to her fevers, I'm

> wondering if there is some connection. When Eva has her fevers

> (which last about 3 days) we need to cancel the pt. Needless to say,

> it is very disruptive.

>

> I'm also wondering if any other children were diagnosed with

> who only had the fevers, with no other symptoms (mouth sores, etc.).

>

> While we still don't havea diagnosis, I am relieved to find this

> board in hopes of educating myself a bit.

>

<image.tiff>

>

<image.tiff>

>

December 18, 2004

Hi there,

My son, 5 y/o, also gets pain in his eyes during his episodes - he says they

" burn. " We always have to turn lights off so he feels better. This part of the

episode is only about a half a day long, and is always at the height of each

episode. See if making things a little darker in the room helps her out.

Hope this helps.

________________________________________________________________

Juno Gift Certificates

Give the gift of Internet access this holiday season.

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May 14, 2005

In a message dated 5/14/2005 12:53:23 AM Central Daylight Time,

sassyt4u@... writes:

think that it is very important to treat as a

" normal " man. Yes, he may look different on the ouside,

but he is as human as everyone else is. Look beyond his physical

limitations. Look at it this way. Would you, rather have your

daughter date an able body man, who makes her unhappy? I think it's

important to keep an open mind. Good Luck...

Thanks Terry! I'll admit that I am worried/concerned about finally meeting

in July, BUT, I think I would feel this way even if he WASN'T limited

physically. And your right, I am thrilled that my daughter is HAPPY, and I

couldn't stand it if she were with an AB man who treated her bad and made

her sad......

My mind is " wide open " about this, and I certainly appreciate your reply to

my post. I am filled with HOPE for my daughter's future with . I

just want to " be there " for them and NOT to " S(mother) "

them.........................

~

May 27, 2005

Hello ,

Welcome to the group. there are several families here who deal with tics,

teen issues, OCD, and a variety of other mental health disorders. Several

do home school as well. I have an 11 year old daughter with generalized

anxiety, OCD and depression, she is on prozac and seroquel. I have a mom

that for what ever her reason is no comfort or help and she is in denial

with her own issues (she is a hoarder). This group of people have been very

supportive to me and my family for several months. Many of the emotions and

frustrations you have expressed are very common conversations here, and you

are not alone. I am a bit short on time, just wanted to send you a quick

welcome and introduce myself. I am sure there are many others that will

jump in and you will be well on your way of developing a great supportive

network. BTW, have a good holiday weekend!

Amy

_____

From:

[mailto: ] On Behalf Of

Sent: Friday, May 27, 2005 8:41 PM

Subject: Introduction

Hello, I am new here. I have 3 children, a boy (14), and 2 girls (ages 12 &

2), and we are a Homeschooling family and have been for a long time. I

joined this list because I discovered my son is suffering from symptoms of

OCD. He has had a mood disorder since he was very young, and had his first

severe depression at age 8 in which I took him to a psychiatrist (and did

not get any help). I think he has Bipolar disorder (runs in my family)

with tourette's and now OCD, and maybe ADHD too. His symptoms have really

worsened and changed since hitting puberty, particularly in the last year.

I worry myself sick sometimes because my only sibling (younger brother), and

a maternal uncle are both severely disabled with severe psychiatric

disabilities (schizoaffective disorder & manic depression) which began in

adolescence. Most of the time I feel so utterly alone and frightened

inside with this problem and I have no one to talk to who truly understands

my concern. Especially coming from a family riddled with mental illnesses

like mine - being a sibling. Watching my own mother be devasted by my

younger brothers illness and my family nearly destroyed in its wake. And,

later finding out the same thing had happened to her mother. It's a

generational pattern.

I read and read looking for answers, searching for clues to what his

symptoms are (I refuse to live in denial, as my Mother does, but I realize

this is a survival mechanism for her also). I cannot get support or

understanding from her, only condemnation, (how could I put her 'perfect'

grandson on 'drugs', there is nothing wrong with him.......(only

me)........my Mother only sees what she wants to see and I sadly I can't

talk to her. How I wish my Grandmother were still alive. She was the

wisest and kindest woman I ever knew.

OK, so anyway, enough about me, right. My son has been on gabitril (a mood

stabilizer, not a first line tx for bipolar disorder, but he is not being

adequatetly treated because I can't find anyone to treat him but am working

very hard to find someone........and finding it to be nearly

impossible......because I am working through the public mental health

system..we are a medicaid family..and limited options, and it's a long

story, but I am supposed to " make the system work for me " , right, well I've

been trying, meanwhile my son is getting worse and worse it would seem and

no one seems to care. It's been 2 years now since I took him there for

help. I still can't believe this is the kind of treatment, so called

" medical care " a child with a neurological condition recieves in the

wealthiest country in the world, on the planet ever, in the 21st

century..............if that isn't saying something, I don't know what

is..................and everywhere I turn someone is criticizing me it would

seem, either for placing my son on medication, taking him to a psychiatrist,

or 'labeling' him, whether it is family members, well-meaning " friends " , or

the medical establishnment.........they are all highly

critical..........what none of them seem to understand is that none of that

matters, what does matter, is that my son is suffering, he is getting worse,

time is ticking away, his childhood is slipping by, our family is suffering

daily, yearly, due to treatment failure, and then they blame us - the

family, the mother, the parents, stress in the home, you know, it always

comes down to that, somehow they turn the table on you........you try to do

the right thing, and get your children the medical attention and care that

you know that they need and deserve, and then you are actually labeled a bad

mother, you are stigmatized for doing so when they can't or won't help, or

when the treatment they give is unhelpful and makes things

worse.................it's " stress in the home " , that is the stamp we

received. It's been horrible. Worst of all, my son has developed a

(healthy) phobia of all doctors as a result of the inadequate and grossly

neglectful and discriminatory treatment our family has recieved. But,

thankfully he is still willing to go and try again.

from September to January he suffered from constant complex motor tics.

This was a new thing. He was highly distracted and disoriented also. He

gets confused when we go out sometimes. He has severe social anxiety. and

panic attacks. He no has deteriorated to wearing huge baggy sweatpants (not

in style at all), refuses to cut his hair at all, wears a black cap (winter

type) down almost to his eyes evertime he goes out (even in 95 degree

weather and camping like today). He doesn't care if people stare or tease

him. He won't wear normal clothes, he won't let me buy him clothes, and he

refuses to go out otherwise. I do not understand this. I ask him why. He

says everything else " feels " weird. He will say nothing more. Usually he

talks to me more.

This whole thing is just upsetting me so much, I can hardly stand it. I

feel like crying all the time. I am so worried about him and no one

understands how much I am worried. I need help. He needs help. Our family

needs help. I've tried to tell his pediatrician (for years) that he has

serious problems, I've taken him to 2 different specialists, one made him

worse with the medication he gave him and refused to take him off of it

(very scary), and the other one did not help and then refused to see him.

We've been waiting for an appt. for months now (next week).

I am overwhelmed.

I feel like nothing will help now.

Our list archives, bookmarks, files, and chat feature may be accessed at:

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Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D.,

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suggestions may be addressed to Louis Harkins, list owner, at

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_____

May 27, 2005

marianne_nancy wrote:

> Hi, My name is nne and I'm new to the group. I have two

> children. My daughter is 9 years old, and my son is 5. My daughter

> has always been an anxious child, right from the time she was born

> it seems. She was diagnosed in April with Generalized Anxiety

> Disorder, and within a few weeks it developed into a severe case of

> Obsessive Compulsive disorder. It appeared to happen almost

> overnight.

>

> She is plagued with disturbing intrusive thoughts almost all the

> time....Terrible thoughts that are even too frightening to

> mention...She has been seeing a psychologist for the last month.

> She has been prescribed Prozac and ativan for her anxiety. They

> tell us it will take at least a month for the medication to work,

> but she is so terrified by these thoughts, that we wonder if we

> should be doing something more to help her. We have been trying to

> use relaxation tapes and yoga, but she is usually too upset to do

> them.

>

> We were never a fan of medication. We thought we could handle it

> ourselves, but she is just so sick, we felt we had no choice. We're

> praying that the medication provides her some relief. She feels the

> need to tell us every thought that comes into her head (sometimes

> even 10 a minute)and needs our reassurance constantly. She is

> trying to fight back against " the Worry Guy " , but she ends up

> mumbling to herself in a frantic state. Sometimes we can't

> understand what she is saying because she is talking so fast. She

> is also showing some agression, and our super shy little girl, has

> become much less inhibited.

>

> We are so worried about her, and wonder if we should be doing

> something more, or if it just takes time. We are living in a

> constant state of chaos and fear. If anyone has been here, I would

> appreciate any advice or suggestions. Thank you.

>

Hi nne, and welcome! All of that sounds VERY familiar! I am also

new to this group and can't believe how much better informed I am just

from reading and learning from everyone else. I have a just turned 10

yr. old daughter. She developed sudden symptoms at age 7 1/2. Her

anxiety went sky high, she wouldn't separate from me, would bolt from

the classroom, crying, just terrible anxiety. It was horrible. We had

an initial diagnosis of a simple phobia and generalized anxiety, (she

was afraid of throwing up), but after awhile it became apparent that it

was OCD. She did fairly well on Celexa for 1 1/2 yrs. and had a

" waxing " period this spring where it got suddenly terrible again. We

switched her to Prozac with a small dose of Zyprexa as well. (She wasn't

eating--that's why the Zyprexa). She had a really difficult time

getting ON the Prozac. About week 9, we saw a huge change in her. Her

anxiety was nearly gone, the constant thoughts (she had them all day,

constantly as well) were gone--it was amazing. But during the ramping

up period of the Prozac she would nearly jump out of her skin with

anxiety. She has also become much less inhibited, which is new, and has

angry outbursts. Both of these side effects have been lessening with

time, although they are still there. We are working with the

psychiatrist to figure out the right dose. She may also switch her from

Zyprexa to Abilify, since she's put all her weight back on. Apparently

Abilify doesn't cause as much weight gain. How long has she been in

the Prozac?

I can relate to not wanting to give the medication. Our daughter was

also extremely sick when we finally started. I cried the first time I

gave her the Celexa and I cried harder when I had to put her on the

Zyprexa. I was terrified I was pouring cement in her brain. After

watching her gain her life back this spring, it was absolutely the right

thing to do. She is so happy to be free of her obsessive thoughts.

I worry about my daughter constantly as well. I mourn the fact that

this had to happen to her, to our family. But, when she's doing better

like she is now, it isn't so overwhelming. I hope you can figure out

your daughter's medication soon so that she, and you, can get some

relief and enjoy life again.

Dina

May 28, 2005

Hi, nne.

My name is Ramona. I have a 16 yo daughter who has always been an

anxious child. She was fianlly diagnosed with OCD when she was 9. She

also has generalized anxiety & separation anxiety disorder. She has bad

thoughts, worries a lot mostly about death, has a lot of compulsions

such as tapping & touching & doing things until they are just right.

She is currently on Lexapro although she has been on many different

meds in the past. I too was afraid of giving medication to a child, but

once we found the right one, we were so glad we did. The teriifying

thoughts these children have are not something they should have to

suffer through. It is wonderful if they can deal with it without

medication, but I now believe that sometimes it is neccessary to

medicate.

I also have a 7 yo son. He has not been diagnosed, but just recently

developed some OCD tendencies. He is not on medication since they do

not interfere with his life. He worries some usually at bedtime, but

not to the point where he is not sleeping. He will not sleep in his own

room only my bed or the living room. Right now we have a mattress on the

living room floor for him. Which is a big step from sleeping with mom &

dad. He also chews on his shirts & socks (I know, yuck!). He has 2

friends that are " contaminated " . He will play with them, but they are

not allowed to touch his mattress, get in his swimming pool or eat any

food at our house. It is funny because he has other friends that are

not " contaminated " , just these two.

I will be homeschooling both my children in the fall. My daughter has

been homeschooled since last November. The OCD was more than her school

wanted to deal with. This group has been a Godsend to me. I have learned

so much here. Whenever you need support to just get through the day or

someone to brag to when your child has a major accomplishment. this is

the place to go. I know it is tough to go through this, but it does get

better. So hang in there! My motto is " one minute at a time " . I don't

even shoot for a day at a time anymore. And don't forget to rejoice in

the good times( there will be good times again). They are so special!

Ramona

May 28, 2005

Hi , welcome!

I'm a single mom, 3 sons. My 16 yr old began having OCD before he

turned 12, at the beginning of 6th grade. I felt he might have been

going thru a puberty stage at that time (growth) but don't really

know what might have triggered the OCD. He'd had what I called " OCD

behaviors " before that, but nothing like the 24/7 that appeared

suddenly.

I've read here & elsewhere about bipolar some. At least to know that

it can be tricky finding the right medication combo for it when other

things (disorders) are there too, like OCD. There are others in this

group who do have bipolar in their families also, hope they see your

post!

We live in a rural type area also, so nothing too close to here for

OCD treatment either. And I work at our local mental health center

too! No one there is really familiar with the therapy part of OCD.

However the psychiatrists are more familiar with it, at least the

medication part. However, we see a psych for medication elsewhere

(just don't want to go to where I work since this is " personal " ) and

someone there said the do therapy for OCD so we have my son's first

appt next week; will see how that goes.

If you don't mind telling us about where you live (state and what

part or what near) someone here might know of someone or some

facility.

You're right not to buy into the " family is the cause " stuff, except

that it seems to run in families. I can see where OCD comes into

play in ours. Although my son seems to have got the brunt of it, no

one else affected as badly. He also has diagnoses of dysgraphia

(think that was due to his illegible writing) and Aspergers (on the

autism spectrum, very mild and he's really smart).

My other 2 sons aren't perfect, but no diagnoses!

I have to go take one to a friend's right now, wish I had more time.

Have you checked on the internet or called your state's mental health

site to see if they can direct you to anyone?

> Hello, I am new here. I have 3 children, a boy (14), and 2 girls

(ages 12 &

> 2), and we are a Homeschooling family and have been for a long

time. I

> joined this list because I discovered my son is suffering from

symptoms of

> OCD. He has had a mood disorder since he was very young, and had

his first

> severe depression at age 8 in which I took him to a psychiatrist

(and did

> not get any help). I think he has Bipolar disorder (runs in my

family)

May 28, 2005

Hi again , I replied earlier but wanted to comment on some more

of your post.

You wrote: ...and everywhere I turn someone is criticizing me it

would seem, either for placing my son on medication, taking him to a

psychiatrist, or 'labeling' him....

**As hard as it is, try to ignore them as YOU know you are doing the

right thing. They just don't see it. Might have missed this in your

post, but how does dad feel about it?

You wrote: ...and then they blame us - the family, the mother, the

parents, stress in the home...., and then you are actually labeled a

bad mother....it's " stress in the home " , that is the stamp we

received.

**Oh, you're not the first here to hear that!! But, again, pay it no

attention. I think the thing is - and don't know if I'll word my

thoughts very well right now - that stress does agitate lots of

things/disorders - OCD, anxiety, tics.... And lessening stress can

help relieve some things, OCD ease up maybe or whatever (note I

said " maybe " on that OCD thing!). But it's not *the* cause with all

OCD and doctors/therapists should not dwell on " it's bad parenting,

parents not getting along or sibling problems, etc. " Oh, I don't

mind if they go over ways to de-stress/relax, better ways to

handle/avoid outbursts or meltdowns, ways to NOT stress things in the

home. But with OCD they need to work on HOW to control/boss back OCD

and use methods to help gain control, lessen OCD anxiety, get rid of

some obsession, " whatever " and not dwell on home life as a " cause. "

My OCD son has a twin (not identical) and the 2 don't get along well,

aren't friends but aren't enemies and the other twin really, really

does " get to " my OCD son. (Not so much now that they are older - 16 -

but more when younger.) And I just know the psychologist (who was

also a friend, since he was at our local mental health center where I

work) thought that the stress/agitation my OCD son () felt

with (twin) was a problem. Like it was the " home life " and so

on. And, as stated above, I wouldn't mind if he went over with

how to not let get to him, how to handle situations,

whatever. But I really, really don't think the psych *understood*

OCD actually. He would tell to work on compulsions not

lasting so long, trying to shorten them. But just from some things

said, I think the psych thought it was more " home life " than OCD that

was the problem. I might be wrong, just guessing a bit there. But

it was OCD driving insane, me insane, his brothers fed up

with it, etc.

OK, rambled a bit there. But you're right in not buying into

the " stress in the home " as THE problem.

You wrote: from September to January he suffered from constant

complex motor tics. This was a new thing. He was highly distracted

and disoriented also. He gets confused when we go out sometimes. He

has severe social anxiety. and panic attacks.

**Was there any medication change at the time (new med or dosage

change)?

With the clothes thing and all - there can be so many variables there

as to that. Regular teen thing ( just FINALLY got a hair cut, I

can see his eyes again!) or depression or some sensory issues that

have come up. had a few sensory issues when younger, wouldn't

wear certain clothes, hated the feel of the material. My OCD son

(who also has Aspergers Syndrome) likes only plain t-shirts, doesn't

want any words/pictures on the. My other 2 sons HAVE to have

something on t-shirts, won't wear plain ones. used to wear

jeans all summer, didn't like shorts. Also he went thru a summer or

two with long sleeves, as it felt right to him. I thought at least

others can see ONE twin dressing seasonably (), it's not MOM

who is making him wear that stuff in 90+ degrees! But depression can

leave people not caring about appearance. OCD can cause some clothes

things too.

I hope your upcoming appt goes well! New psychiatrist or new

therapist??

I mentioned earlier your state Mental Health department. Call them

if you feel your son is not getting better (you've tried for 2 years

now!!) and perhaps they will have your local center refer you to

someone with actual experience. That way, Medicaid should still pay

MAYBE, if billed through the mental health center. Just a thought.

> Hello, I am new here. I have 3 children, a boy (14), and 2 girls

(ages 12 &

> 2), and we are a Homeschooling family and have been for a long

time. I

> joined this list because I discovered my son is suffering from

symptoms of

> OCD. He has had a mood disorder since he was very young, and had

his first

> severe depression at age 8 in which I took him to a psychiatrist

May 31, 2005

Hi , and welcome to the list. You certainly have a lot going on right

now. I can understand the concerns you have for your son with his

disorder(s) and the family history :-(

I wanted to mention that sometimes, once OCD is adequately treated, other

suspected disorders clear up as well--or at least the picture becomes less

fuzzy and confusing. The exception to this is depression, which experts say

should be treated first before tackling OCD in a serious way. But as I read

your post, your son has a history of severe depression but at this time he

is not taking an antidepressant? Gabitril is for seizures, primarily, I

think, and is a GABA reuptake inhibitor. Even if you are unhappy with the

doctor who has prescribed this, I would ask him why isn't he isn't trying

first-line meds for depression or bipolar depression... Or, is he now

taking nothing?

The clothing thing is something many of us here can relate to. These can be

either OCD compulsions (to reduce anxiety, keep him " safe " in some OCD way),

or sensory issues (called sensory integration disorder or more recently,

disorders of sensory integration--search either and you will get a lot of

" hits " to learn about this), or both. Lots of OCD kids have this problem,

but usually it seems it's the younger ones. Your son may not be being

purposefully vague about this. My daughter also has a very hard time

describing this problem. Some clothes feel " right " and some feel " wrong "

and she too will wear odd or out-of-season things rather than put up with

the very distressing " wrong " feelings.

While you continue to try to get the system to work for you (ugh :-( , you

may want to contact any teaching hospitals associated with universities you

may have in your area. They are usually staffed with top-flight

psychiatrists and therapists, and offer sliding fees based on income. Look

for an anxiety clinic and/or a depression or bipolar clinic attached to a

university hospital. I think before anything else, you son needs an

accurate diagnosis, *then* the right balance of meds and effective therapy

can be found.

Where are you , what largish city are you near? With that info I'll

see if I can find any university clinics for you to consider.

Hang in there, write again and let us know how things are going.

Kathy R. in Indiana

----- Original Message -----

From: " " <kthielen@...>

> Hello, I am new here. I have 3 children, a boy (14), and 2 girls (ages 12

> &

> 2), and we are a Homeschooling family and have been for a long time. I

> joined this list because I discovered my son is suffering from symptoms of

> OCD. He has had a mood disorder since he was very young, and had his

> first

> severe depression at age 8 in which I took him to a psychiatrist (and did

> not get any help). I think he has Bipolar disorder (runs in my family)

> with tourette's and now OCD, and maybe ADHD too. His symptoms have really

> worsened and changed since hitting puberty, particularly in the last year.

> I worry myself sick sometimes because my only sibling (younger brother),

> and

> a maternal uncle are both severely disabled with severe psychiatric

> disabilities (schizoaffective disorder & manic depression) which began in

> adolescence. Most of the time I feel so utterly alone and frightened

> inside with this problem and I have no one to talk to who truly

> understands

> my concern. Especially coming from a family riddled with mental illnesses

> like mine - being a sibling. Watching my own mother be devasted by my

> younger brothers illness and my family nearly destroyed in its wake. And,

> later finding out the same thing had happened to her mother. It's a

> generational pattern.

>

> I read and read looking for answers, searching for clues to what his

> symptoms are (I refuse to live in denial, as my Mother does, but I realize

> this is a survival mechanism for her also). I cannot get support or

> understanding from her, only condemnation, (how could I put her 'perfect'

> grandson on 'drugs', there is nothing wrong with him.......(only

> me)........my Mother only sees what she wants to see and I sadly I can't

> talk to her. How I wish my Grandmother were still alive. She was the

> wisest and kindest woman I ever knew.

>

> OK, so anyway, enough about me, right. My son has been on gabitril (a

> mood

> stabilizer, not a first line tx for bipolar disorder, but he is not being

> adequatetly treated because I can't find anyone to treat him but am

> working

> very hard to find someone........and finding it to be nearly

> impossible......because I am working through the public mental health

> system..we are a medicaid family..and limited options, and it's a long

> story, but I am supposed to " make the system work for me " , right, well

> I've

> been trying, meanwhile my son is getting worse and worse it would seem and

> no one seems to care. It's been 2 years now since I took him there for

> help. I still can't believe this is the kind of treatment, so called

> " medical care " a child with a neurological condition recieves in the

> wealthiest country in the world, on the planet ever, in the 21st

> century..............if that isn't saying something, I don't know what

> is..................and everywhere I turn someone is criticizing me it

> would

> seem, either for placing my son on medication, taking him to a

> psychiatrist,

> or 'labeling' him, whether it is family members, well-meaning " friends " ,

> or

> the medical establishnment.........they are all highly

> critical..........what none of them seem to understand is that none of

> that

> matters, what does matter, is that my son is suffering, he is getting

> worse,

> time is ticking away, his childhood is slipping by, our family is

> suffering

> daily, yearly, due to treatment failure, and then they blame us - the

> family, the mother, the parents, stress in the home, you know, it always

> comes down to that, somehow they turn the table on you........you try to

> do

> the right thing, and get your children the medical attention and care that

> you know that they need and deserve, and then you are actually labeled a

> bad

> mother, you are stigmatized for doing so when they can't or won't help, or

> when the treatment they give is unhelpful and makes things

> worse.................it's " stress in the home " , that is the stamp we

> received. It's been horrible. Worst of all, my son has developed a

> (healthy) phobia of all doctors as a result of the inadequate and grossly

> neglectful and discriminatory treatment our family has recieved. But,

> thankfully he is still willing to go and try again.

>

> from September to January he suffered from constant complex motor tics.

> This was a new thing. He was highly distracted and disoriented also. He

> gets confused when we go out sometimes. He has severe social anxiety.

> and

> panic attacks. He no has deteriorated to wearing huge baggy sweatpants

> (not

> in style at all), refuses to cut his hair at all, wears a black cap

> (winter

> type) down almost to his eyes evertime he goes out (even in 95 degree

> weather and camping like today). He doesn't care if people stare or tease

> him. He won't wear normal clothes, he won't let me buy him clothes, and

> he

> refuses to go out otherwise. I do not understand this. I ask him why.

> He

> says everything else " feels " weird. He will say nothing more. Usually he

> talks to me more.

> This whole thing is just upsetting me so much, I can hardly stand it. I

> feel like crying all the time. I am so worried about him and no one

> understands how much I am worried. I need help. He needs help. Our

> family

> needs help. I've tried to tell his pediatrician (for years) that he has

> serious problems, I've taken him to 2 different specialists, one made him

> worse with the medication he gave him and refused to take him off of it

> (very scary), and the other one did not help and then refused to see him.

> We've been waiting for an appt. for months now (next week).

> I am overwhelmed.

> I feel like nothing will help now.

>

June 5, 2005

Hi . Welcome to the group. To answer some of your questions -

It seems like people's experiences vary greatly regarding how long it

takes to realize that the fevers are not just a coincidence. We were

lucky in that once my daughter had her second fever, her doctor

started questioning what was going on and monitoring her. We've had

lots of ups and downs and still don't have a diagnosis. Her fevers

and symptoms have changed over time (she is now 22 months old, fevers

started at 9 months) and she still doesn't fit a diagnosis. But it

was a relief to know that her doctor was monitoring her and we didn't

have to hear " its just a virus " month after month. By the time she

had her 3rd fever, her pediatrician referred us to a specialist. But

I think our experience is unique in that regard.

As far as specialists go - we are also in the San Francisco Bay

Area. I would recommend seeing an Infectious Disease specialist at

either UCSF, Stanford or Oakland Children's Hospital. We have had

our daughter's file reviewed by all hospitals but see the Infectious

Disease and Rheumatologist specialists at Stanford regularily. I

would recommend bringing the matter up with your pediatrian and

requesting a referral to any of these hospitals.

If you have any other questions or need any other information, please

let me know.

Take care & good luck!

am

(mom to Layla, 22 months)

> Hello,

>

> My name is , and I am mom to Al-Hieser. I am excited to find

> this group and am hoping that I can gain some knowledge to help me

> better go forward.

>

> My son is 20 months old and is now experiencing his forth fever.

> All fevers have been spaced out by exactly six weeks. All come on

> suddenly and range somewhere between 104 - 104.5. They have each

> lasted 6 days, and suddenly resolved. I have taken him to the

> doctor each time, but as of yet no blood work has been done. The

> doctor I take him to seems to think that since his throat looks

> inflammed that the fever is probably from a virus, but since his

> second fever I have been suspicious. With Motrin and Tylenol I can

> bring his fever under control. Usually to about 101.5 - 102.0. He

> has had no other symptoms.

>

> My question to the group is when did you know, and discuss with

your

> doctor the possiblity that the fevers your children are suffering

> from was not just mere coincidence. I am trying to gather

> information so that the next time my son has an episode I know how

> to approach the doctor.

>

> Other than the fevers my son has been remarkedly healthy. He had

> one other long, unexplained fever last July when he was 10 months

> old. He is also fine, happy, and healthy between fevers.

>

> Any information on how you handled things in the beginning would be

> appreciated. Also, if any one knows of any clinics or doctors in

> San Francisco familar with recurring fevers that would be great.

>

> Thank you,

>

> Burger

> Mom of Al-Hieser - 20 months

> San Francisco, CA

June 14, 2005

!

First, Congratulations! Second, you look absolutely amazing and are an

inspiration to us

all. I just started my 2nd BFL challenge yesterday. The last one I did was in

March of 2003,

and have had success since keeping it up. So, I know first hand what

accomplishing a

challege will do. Good luck in your last 2 weeks.

> Hello everyone!

>

> I have read this board on and off for about a year and a half, but

> have never posted. All of the people who recently joined and the

> fellow lurkers who made posts have inspired me to escape from

> lurkdom.

>

> I'm currently in week 10 of my challenge. For some reason I have a

> lot of bravery today, and I actually posted pictures as well (see

> the folder). I have started at least a handful of challenges

> in the past, but this will be the first one I finish.

>

> For the people just starting the challenge, please don't

> underestimate the mental aspect. In another post, pointed out

> some articles on her site that cover this better than I could ever

> hope to (e.g., " This is Your Brain on Body For Life "

> http://www.skwigg.com/id60.html) My past challenges failed because

> I didn't have good reasons. Simply " to be thin " or " to be in good

> shape " wasn't enough. I had to figure out the compelling, emotional

> reasons I can't live anymore in the shape that I've been in.

>

> I was always the biggest cynic of the mental transformation that

> Bill discusses in the BFL book. I thought, " Yeah, right. Eating

> this way and working out is really going to change my life and my

> brain. Don't give me that touchy-feely crud. " But when you open

> yourself up it really does happen! If you commit to BFL and really

> dedicate yourself to making changes, you will not believe the

> changes inside and out. I am a 100% different person than I was

> before, and am inspired to make major changes in my life in other

> areas.

>

> This is an awesome group to be a part of. Thank you to everyone who

> offers their support, advice, and insight. Hopefully I can offer

> some help in the future! Thanks for listening

>

June 14, 2005

All I can say is " You look amazing " and only in 10

weeks! I am in awe! You should be very proud of your

self. Have you been doing everything completely by

the book? Could you give me some info on what you are

eating on a daily basis. It would be most helpful!

You have inspired me! My hat is off to you!

Lorraine

--- nheyrman <nheyrman@...> wrote:

> Hello everyone!

>

> I have read this board on and off for about a year

> and a half, but

> have never posted. All of the people who recently

> joined and the

> fellow lurkers who made posts have inspired me to

> escape from

> lurkdom.

>

> I'm currently in week 10 of my challenge. For some

> reason I have a

> lot of bravery today, and I actually posted pictures

> as well (see

> the folder). I have started at least a

> handful of challenges

> in the past, but this will be the first one I

> finish.

>

> For the people just starting the challenge, please

> don't

> underestimate the mental aspect. In another post,

> pointed out

> some articles on her site that cover this better

> than I could ever

> hope to (e.g., " This is Your Brain on Body For Life "

>

> http://www.skwigg.com/id60.html) My past challenges

> failed because

> I didn't have good reasons. Simply " to be thin " or

> " to be in good

> shape " wasn't enough. I had to figure out the

> compelling, emotional

> reasons I can't live anymore in the shape that I've

> been in.

>

> I was always the biggest cynic of the mental

> transformation that

> Bill discusses in the BFL book. I thought, " Yeah,

> right. Eating

> this way and working out is really going to change

> my life and my

> brain. Don't give me that touchy-feely crud. " But

> when you open

> yourself up it really does happen! If you commit to

> BFL and really

> dedicate yourself to making changes, you will not

> believe the

> changes inside and out. I am a 100% different

> person than I was

> before, and am inspired to make major changes in my

> life in other

> areas.

>

> This is an awesome group to be a part of. Thank you

> to everyone who

> offers their support, advice, and insight.

> Hopefully I can offer

> some help in the future! Thanks for listening

>

__________________________________________________

June 14, 2005

OH MY GOODNESS NICOLE! You have made incredible progress! You

should be very proud of yourself girl. I would be interested in

seeing your stats.........it looks like you have lost a boatload of

weight and inches. Keep up the awesome progress!

> Hello everyone!

>

> I have read this board on and off for about a year and a half, but

> have never posted. All of the people who recently joined and the

> fellow lurkers who made posts have inspired me to escape from

> lurkdom.

>

> I'm currently in week 10 of my challenge. For some reason I have a

> lot of bravery today, and I actually posted pictures as well (see

> the folder). I have started at least a handful of

challenges

> in the past, but this will be the first one I finish.

>

> For the people just starting the challenge, please don't

> underestimate the mental aspect. In another post, pointed

out

> some articles on her site that cover this better than I could ever

> hope to (e.g., " This is Your Brain on Body For Life "

> http://www.skwigg.com/id60.html) My past challenges failed because

> I didn't have good reasons. Simply " to be thin " or " to be in good

> shape " wasn't enough. I had to figure out the compelling,

emotional