Re: venting!!!

[Guest guest]

:

I am sooo sorry, I missed your post...but caught a response to it. Your

husband is Navy? How about being transferred to Newport, RI? Just a

thought, but here in RI, ABA services are paid for by the state through the

Beckett Medicaid waver program. Eligibility is based on the disabled

CHILD'S INCOME...instead of yours. We too were turned down by SSI, but get

the coverage anyway...through the Long Term Care program of Medicaid (

Beckett). A lot of what normal insurances don't cover can be submitted to

the state through this program...things like speech, OT, extra dental costs,

etc. They even provide Pull-ups for older children who are still

incontinent!

As for the mercury...there is no doctor here that does chelation, but

Worcester, MA and Boston, MA are both just 1 1/2 hours away, and there are

DAN doctors there...such as Hart in Sterling, MA and Hardy in Boston

area and LaCava in West Boylston. Most Moms here are actually using Dr.

McCandless, or are on her waiting list to get in soon. Since

you're already GFCF, that won't hold you back from her help. She is in CA,

but works with my friends son by FAX and Email! We have a nurse practitioner

here in Newport area that orders test kits and tests...then Dr McCandless

interprets data, prescribes and directs treatment. We even have an excellent

compounding pharmacist here who carries just about every supplement the kids

need!

Not to mention...there's a core group of Moms here who meet regularly to

discuss treatments, diets, test results, etc...and one started an autism

support group at the Newport Hospital that meets once a month!

So....will we be neighbors soon or what!

I do hope things work out for you...trust me, I've been through the ringer

with doctor's and battles with schools...but RI is certainly trying to come

around anyway!

Take Care,

[Guest guest]

> WARNING!! VENTING IN PROGRESS!!

>

,

I'm sorry you're having such a tough time. What has happened to our

kids is absolutely, indescribably, unfair. I wish I had some help to

offer, other than sympathy.

The only idea I have, if you haven't tried it already, is to see if

there is a local support group like the Autism Society or the Arc?

Our state autism society has advocates who can give you advice on

getting services. Since they're not paid by the school system or

local agencies, they don't have a financial interest in seeing you

denied services.

We're thinking of you. I hope things get better soon.

kat

[Guest guest]

Dear ,

I am sorry for your anger, I too have had to fight, and pay my own way. I

went from being a person with savings and good job to so indebt I cannot see

a way out. I cannot work becuase I must supply x hours of my son therapy

because we can no longer pay 30 dollars and hour. My son goes to school in

one town half day and afternoons are spent on another getting therapy the

school cannot provide. capped insurance for speech years ago. Service where

I live do not exist, I have to fly in people and house and feed then while

they are here. Respit? are you kidding? There is no time this child isn't

being worked with, let alone the fact that there are No respite workers

where I live. Last month alone I spent 376.00 with kirkmans, another 44.75

with Houston enzimes one doctor visit 275.00 and travel expense, 200.00.

Lets not even add in the cost of gfcf eating, or the fact that I have to

order 90% of his food off the web. See it's all of us.

Mercury distroyed my sons life, but I will not let it distroy what reamins.

I will fight this to the bitter end.I know of no other disorder where

parents have to fight so hard for services or spend so much out of their

pocket for help. I blew my stack the other day when I got a phone call from

some charity that gives money to the family of victems of drunk driving

accidents. If the family was hurt by a drunk driver, this charity come to

their aide and helps pay the bills!!! Well where is our aid, we didn't

choose to have mercury injected into our childern, yet we are left to handle

it single handedly. Sorry you won the big lottery, the mercury lottery and

your pay off is to deal with it, alone, and broke. welcome to the

club.Sorry, i'm blowing off steam today too! It does get better, and you

will feel better as your child gets better. Good luck, Cab

[ ] Venting!!!

> WARNING!! VENTING IN PROGRESS!!

>

> I have an unspeakable amount of RAGE!! When Kolin was

> first diagnosed, I went through grief, guilt and

> anger. We started the GFCF diet immediately, he

> started ABA in Dec. We are doing supplements like SNT

> and TMG. Have been giving Nystatin.

>

> I have been fighting with school, going to mediation,

> for the smallest things, a shadow, additional ABA,

> even potty training. I am fighting with Family

> services for Medicaid, even though I do not work and

> my husband is only a SGT in the military.(means makes

> very little money!) I am fighting with the MR/DD

> facility for simple Respite care. The only success I

> have had was with our Insurance for ABA, but I must

> battle with them to appropriately pay for specialty

> appointments. The Insurance will not pay for

> additional testing, unless you go through the HMO

> hoops! We are still waiting to hear from SSI, when

> the appeal was submitted in SEPTEMBER!

>

> In doing research, I find out that what I thought was

> the right thing to do for my children, did more harm

> for their lives, than good. The possible cause of

> Kolin's Autism, not to mention Kassie's(6 y/o

> daughter)

> Asthma, being not just the mercury in their Vaccines,

> but also the Rhogam I was told I needed during and

> after my pregnancies.

>

>

> I am TIRED of being told that the military should pay

> for everything, when they refuse do a little know

> " duplication of services " law!

> I am TIRED of waiting for other people to decide to do

> their JOBS! I am being told that I am doing my job as

> a parent, by doing EVERYTHING and paying for

> EVERYTHING for my son. I do willingly, but I KNOW

> there is help out there. All the foundations and

> government programs give money to groups that do not

> do ANYTHING for the people who need it!

>

> I am furious!!!

>

> thank you for reading!

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

I think having to fight EVERYBODY for everything and just to get a little help

is so anger producing and so frustrating. I used to be a half full kind of a

girl and often feel now that I am the half empty type....I hate it. But what

we have been thru has been so frustrrating, upsetting, ,tragic etc.

My six yr old daughter also has asthma ......... this is her autism expression

so to speak....this is how the vacs affected her. KNow I need to chelate her

too. Feels like a double wammy, double worry. We dont have a genetic

backround of asthma or allergies.... there is more to where this came from for

her. Overloaded her body with a bunch of vacs crap. Anyway, ,I am sorry you

are going thru this and just wanted to say, I can relate!

[ ] Venting!!!

WARNING!! VENTING IN PROGRESS!!

I have an unspeakable amount of RAGE!! When Kolin was

first diagnosed, I went through grief, guilt and

anger. We started the GFCF diet immediately, he

started ABA in Dec. We are doing supplements like SNT

and TMG. Have been giving Nystatin.

I have been fighting with school, going to mediation,

for the smallest things, a shadow, additional ABA,

even potty training. I am fighting with Family

services for Medicaid, even though I do not work and

my husband is only a SGT in the military.(means makes

very little money!) I am fighting with the MR/DD

facility for simple Respite care. The only success I

have had was with our Insurance for ABA, but I must

battle with them to appropriately pay for specialty

appointments. The Insurance will not pay for

additional testing, unless you go through the HMO

hoops! We are still waiting to hear from SSI, when

the appeal was submitted in SEPTEMBER!

In doing research, I find out that what I thought was

the right thing to do for my children, did more harm

for their lives, than good. The possible cause of

Kolin's Autism, not to mention Kassie's(6 y/o

daughter)

Asthma, being not just the mercury in their Vaccines,

but also the Rhogam I was told I needed during and

after my pregnancies.

I am TIRED of being told that the military should pay

for everything, when they refuse do a little know

" duplication of services " law!

I am TIRED of waiting for other people to decide to do

their JOBS! I am being told that I am doing my job as

a parent, by doing EVERYTHING and paying for

EVERYTHING for my son. I do willingly, but I KNOW

there is help out there. All the foundations and

government programs give money to groups that do not

do ANYTHING for the people who need it!

I am furious!!!

thank you for reading!

__________________________________________________

[Guest guest]

Amen Cab! I too am where you are trying to save my son in all of the same

ways with the same results. So see, , you're not alone. Frustrated in

New Orleans....Sheila

>From: " Marshall " <mcbailey@...>

>Reply-

>< >

>Subject: Re: [ ] Venting!!!

>Date: Fri, 22 Feb 2002 13:42:51 -0600

>

>Dear ,

>I am sorry for your anger, I too have had to fight, and pay my own way. I

>went from being a person with savings and good job to so indebt I cannot

>see

>a way out. I cannot work becuase I must supply x hours of my son therapy

>because we can no longer pay 30 dollars and hour. My son goes to school in

>one town half day and afternoons are spent on another getting therapy the

>school cannot provide. capped insurance for speech years ago. Service where

>I live do not exist, I have to fly in people and house and feed then while

>they are here. Respit? are you kidding? There is no time this child isn't

>being worked with, let alone the fact that there are No respite workers

>where I live. Last month alone I spent 376.00 with kirkmans, another 44.75

>with Houston enzimes one doctor visit 275.00 and travel expense, 200.00.

>Lets not even add in the cost of gfcf eating, or the fact that I have to

>order 90% of his food off the web. See it's all of us.

>Mercury distroyed my sons life, but I will not let it distroy what reamins.

>I will fight this to the bitter end.I know of no other disorder where

>parents have to fight so hard for services or spend so much out of their

>pocket for help. I blew my stack the other day when I got a phone call from

>some charity that gives money to the family of victems of drunk driving

>accidents. If the family was hurt by a drunk driver, this charity come to

>their aide and helps pay the bills!!! Well where is our aid, we didn't

>choose to have mercury injected into our childern, yet we are left to

>handle

>it single handedly. Sorry you won the big lottery, the mercury lottery and

>your pay off is to deal with it, alone, and broke. welcome to the

>club.Sorry, i'm blowing off steam today too! It does get better, and you

>will feel better as your child gets better. Good luck, Cab

> [ ] Venting!!!

>

>

> > WARNING!! VENTING IN PROGRESS!!

> >

> > I have an unspeakable amount of RAGE!! When Kolin was

> > first diagnosed, I went through grief, guilt and

> > anger. We started the GFCF diet immediately, he

> > started ABA in Dec. We are doing supplements like SNT

> > and TMG. Have been giving Nystatin.

> >

> > I have been fighting with school, going to mediation,

> > for the smallest things, a shadow, additional ABA,

> > even potty training. I am fighting with Family

> > services for Medicaid, even though I do not work and

> > my husband is only a SGT in the military.(means makes

> > very little money!) I am fighting with the MR/DD

> > facility for simple Respite care. The only success I

> > have had was with our Insurance for ABA, but I must

> > battle with them to appropriately pay for specialty

> > appointments. The Insurance will not pay for

> > additional testing, unless you go through the HMO

> > hoops! We are still waiting to hear from SSI, when

> > the appeal was submitted in SEPTEMBER!

> >

> > In doing research, I find out that what I thought was

> > the right thing to do for my children, did more harm

> > for their lives, than good. The possible cause of

> > Kolin's Autism, not to mention Kassie's(6 y/o

> > daughter)

> > Asthma, being not just the mercury in their Vaccines,

> > but also the Rhogam I was told I needed during and

> > after my pregnancies.

> >

> >

> > I am TIRED of being told that the military should pay

> > for everything, when they refuse do a little know

> > " duplication of services " law!

> > I am TIRED of waiting for other people to decide to do

> > their JOBS! I am being told that I am doing my job as

> > a parent, by doing EVERYTHING and paying for

> > EVERYTHING for my son. I do willingly, but I KNOW

> > there is help out there. All the foundations and

> > government programs give money to groups that do not

> > do ANYTHING for the people who need it!

> >

> > I am furious!!!

> >

> > thank you for reading!

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

Vent away!!!!That's what we're here for......not only knowledge but a

bit of emotional support as well. What ticks me off is when Clinton's

administration made up the statute of limitations for vaccine compensation

for the kids. They knew that most of the kids would not be diagnosed until

they were three or more which in most cases would disqualify them from

receiving any money if they were damaged early on in their innoculations..

Talk about deceitfulness! First they damage our kids then they won't help us

or pay up!.This is injustice at it's finest!

Thanks for listening, R

[Guest guest]

i've done them both already too. plus i am on the state medicare drug

program and my family thinks i may loose my coverage because i made $80 too much

last year.

[Guest guest]

thanks you guys. i just feel picked on lately!!

kathy in il

[Guest guest]

Kathy, I am so sorry to hear all you are going through. Has Enbrel or Remicade

been mentioned? Phone and tell them to come up with something else fast. My

prayers are with you.

Hugs

June

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

From: kringlemom@...

well my rheumi's office just called back and said i can not go back on the

methotrexate, they feel with the incidents i had with my tongue and chest it

would be too great a risk. so she tells me they are sending me information

and a prescription for arava. i said great, i've already taken that back in 97

or 98. i was so dizzy i had to hang on to the walls at work to get around. she

told me to review the information. but ultimately it is my decision. my appt

is in 3 weeks. i am so tired and sore, just don't want to do it

anymore.(housework, motivation 0) i sat here and ran a fever last weekend. i

haven't felt

this way in awhile. add on my 4 front teeth are loose and so sore. my car is

leaking trans fluid again in 2 spots and was told that the fluid is cheaper

than the fix. i am still trying to recover from the car catching on fire,

christmas, sinus infection, ear infection, bronchitis, pneumonia, steroid

boost,

yeast infections x 6 meds and still a problem !!!!!!! i always hear, don't

worry next year will be better. it really hasn't been so far!!!

kathy in il

[Guest guest]

I'm sorry you're going through so much Kathy. Since mtx has been so

effective for you,

maybe a lower dose wouldn't have such side effects (if it's from the

mtx).

When I was on mtx many years ago, I had side effects at 15mg. Instead

of decreasing

my dose to what I could tolerate, I was switched to something else.

I'm on mtx again

at only 10mg, and so far I'm tolerating it. I know you've tried so

many things and nothing

worked until mtx. It really stinks when you find something that works

so well and you have

to stop taking it due to side effects. Hang in there. Hopefully your

doctors will find

something to make you feel better.

a

On Mar 1, 2006, at 6:58 PM, kringlemom@... wrote:

> well my rheumi's office just called back and said i can not go

> back on the

> methotrexate, they feel with the incidents i had with my tongue and

> chest it

> would be too great a risk. so she tells me they are sending me

> information

> and a prescription for arava. i said great, i've already taken that

> back in 97

> or 98. i was so dizzy i had to hang on to the walls at work to get

> around. she

> told me to review the information. but ultimately it is my

> decision. my appt

> is in 3 weeks. i am so tired and sore, just don't want to do it

> anymore.(housework, motivation 0) i sat here and ran a fever last

> weekend. i haven't felt

> this way in awhile. add on my 4 front teeth are loose and so sore.

> my car is

> leaking trans fluid again in 2 spots and was told that the fluid

> is cheaper

> than the fix. i am still trying to recover from the car catching

> on fire,

> christmas, sinus infection, ear infection, bronchitis, pneumonia,

> steroid boost,

> yeast infections x 6 meds and still a problem !!!!!!! i always

> hear, don't

> worry next year will be better. it really hasn't been so far!!!

>

> kathy in il

>

>

>

>

[Guest guest]

I'm so sorry to hear all of this, Kathy. Vent away.

Why do you suppose your teeth are loose?

I read in one study that Arava might be better tolerated if you don't take

the loading dose. Last time, did you?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] venting!!!

> well my rheumi's office just called back and said i can not go back on

> the

> methotrexate, they feel with the incidents i had with my tongue and chest

> it

> would be too great a risk. so she tells me they are sending me information

> and a prescription for arava. i said great, i've already taken that back

> in 97

> or 98. i was so dizzy i had to hang on to the walls at work to get around.

> she

> told me to review the information. but ultimately it is my decision. my

> appt

> is in 3 weeks. i am so tired and sore, just don't want to do it

> anymore.(housework, motivation 0) i sat here and ran a fever last

> weekend. i haven't felt

> this way in awhile. add on my 4 front teeth are loose and so sore. my car

> is

> leaking trans fluid again in 2 spots and was told that the fluid is

> cheaper

> than the fix. i am still trying to recover from the car catching on fire,

> christmas, sinus infection, ear infection, bronchitis, pneumonia, steroid

> boost,

> yeast infections x 6 meds and still a problem !!!!!!! i always hear,

> don't

> worry next year will be better. it really hasn't been so far!!!

>

> kathy in il

[Guest guest]

my teeth are loose from my braces. they have no roots to them anymore. as

far as arave. i really don't remember, just the part of hanging on the walls

to walk around the office

kathy in il

[Guest guest]

write it down if you have to. i've sent a letter tp my rheumi before. when i

went in for my appt., she told me it made her cry that i suffered.

kathy in il

[Guest guest]

In a message dated 3/2/2006 10:08:53 PM Central Standard Time,

kringlemom@... writes:

write it down if you have to. i've sent a letter tp my rheumi before. when

i

went in for my appt., she told me it made her cry that i suffered.

ty Kathy i will do that. my husband has to work that morning so i will have

my 2yr old with me... fun! lol so we'll see how it goes. hugs

from PA

[Guest guest]

you will be distracted with your little one. write it down. you might miss

something otherwise

kathy in il

[Guest guest]

In a message dated 3/3/2006 5:31:04 AM Central Standard Time,

kringlemom@... writes:

you will be distracted with your little one. write it down. you might miss

something otherwise

Yes i will sit down sometime sunday and write it all out. She may think i'm

nutz, but oh well. I need help and if i have to go thru the trouble of

getting there she is going to do more than write refill scripts and send me on

my

way.

[Guest guest]

yep, gotta look out for #1!!! my boss was saying something about a survey

where your primary care dr only listens for the first 23 seconds!!!! sometimes

it seems that way!!

kathy in il

[Guest guest]

In a message dated 3/3/2006 3:30:57 PM Central Standard Time,

kringlemom@... writes:

yep, gotta look out for #1!!! my boss was saying something about a survey

where your primary care dr only listens for the first 23 seconds!!!!

sometimes

it seems that way!!

lol i dont think she was listening to me at all. during my last appointment

she didnt evem remember putting me on humira!!!!!! How dumb can you be

really...I mean come on!

[Guest guest]

take a moment and review a chart!!

kathy in il