New to Group

August 17, 2007

Since he was a baby I have been taking him to Dr afte Dr telling them something was not right. I was told by Dr.'s that I was making up things for attention and my son would have "attacks" for attention.

Now, 15 yrs later after seeing the peds rheumatologist (his pediatrician decided he needed to see the RA Dr. because of swollen joints) he found what was going on. He also detected a heart problem and sent him to a cardiologist who diagnosed my son with mitral valve prolapse and regurgitation. He ordered major amounts of blood work and tests. He also discovered a pulmonary defect. So we have just finally gotten diagnosis' and starting treatments.

We are in West Texas.

Thanks for the support.

August 17, 2007

Hi and welcome to the group. I admit I do

not much about what your son was diagnosed with, but I would be curious to know

what meds he is on and his symptoms. You have found a great group of people with

kids of varying ages and types of rheumatic disease. Everyone has lots of info

and are willing to share what they have learned, along with just being here for

each other when it all gets too much. Feel free to ask any questions you may

have or vent whenever you need to. I see you have asked about Plaquenil. I am

sure there are others here on that. Let us know how your son is doing, Michele

( 20, spondy)

From: [mailto: ] On Behalf Of Posey family

Sent: Thursday, August 16, 2007

7:56 AM

Subject: New to group

My 16 yr old son has been diagnosed with LUPUS

ERYTHEMATOSUS.

I am still researching that and the meds he has prescribed.

September 3, 2007

> Here goes. I guess you all get this with every new person. " What the heck is

going on? "

> I've been dealing with MCS for afew years now I get a real computer (I'm on

webtv.)

> and I get sick instantly!

Welcome Judi (although I'm sure you'd rather not be here!),

Reacting to a computer is similar to reacting to chemicals -- they both seem to

have (more or less) the same cause, and also the same cure. That is, they seem

(for the most part) to be due to excessive buildup of toxins (acidic wastes)

in the body, and also inadequate nutrition (or if you're eating well, poor

absorption). The " cure " is to (slowly) remove the buildup of toxins within

the body, either by taking substances which remove it from the body (chelators),

or by supporting your organs of elimination (liver, kidneys) so that they

can deal with it in the way a person with normal health would.

However, a cure is a long-term solution, and most people merely want to

feel better in the short-term. For that, you can eliminate all wireless

electronics from your house (wireless internet, cordless phones), replace

all energy-efficient compact florescent light bulbs with incandescents,

try to keep a distance from all electronics and power outlets, and increase

your intake of antioxidants, essential fatty acids, minerals, etc. You

may also have luck with certain EMF protection devices on the market (although

in some cases, these may actually make your symptoms worse). Also, the removal

of metal objects on your person (including dental work) will make you less

of an " antenna " for nearby electromagnetic fields.

Note that a person with normal health probably wouldn't have any difficulty

with your computer, so one cannot technically blame the computer, but rather

the blame should be on the poor health of the person experiencing the symptoms.

Of course, there are cases where people are exposed to high levels of

radiation, which could be caused by faulty electronics or faulty wiring.

In such cases an electrician would be need to fix the wiring, or the

electronics replaced with something else.

Marc

September 5, 2007

Given the MCS it is possible fumes, dust, or residue on the keyboard

are to blame. Try leaving the keyboard outside (not in the rain) for a week

or so. Same with the computer and monitor.

But it could be the RF, ELF or microwaves. Make sure any wireless features

are disabled. Then see if it's better keeping the screen and computer as

far from you as possible. Also the cords and power supplies.

I try to make time when the computer is used by my 5 year old the exception,

not the rule.

Bill

On 9/3/07, judi_mcpherson <judibugs@...> wrote:

>

> Here goes. I guess you all get this with every new person. " What the

> heck is going on? "

> I've been dealing with MCS for afew years now I get a real computer (I'm

> on webtv.)

> and I get sick instantly!

> I've been going to a holistic Doctor for about 6 months and she uses an

> EDM machine on me. Is that a problem?

> I have a 5yo girl and she loves the computer. What do I do to make her

> safe?

> I'm 50 so I'm not surprized things are catching up with me but she has a

> long way to go.

> Thanks for being here.

> Yours in peace from the chemically insane, Judi

>

September 13, 2007

Have you tried the ketogenic diet ? Sue

mirandag1981 <mirandag1981@...> wrote:

Hi, my name is Miranda and I am writing in regards to my 4 y/o

daughter, Hailey. She has had a severe case of epilepsy for 2 1/2

years now. She had developed typically until the age of 2 1/2. We have

tried a number of different things to help her over the years

including 7 AED's, herbs (from an Amish dr.), a number of vitamin

supp., chiropractors, cranio sacral, GFCF diet, and currently the

ketogenic diet. Her diagnosis is generalized onset epilepsy. She

currently has between 50-200 myoclonic seizures per day, down from

about 500. She also has tonic clonic seizures, but those have been

pretty well controlled lately, has not had one for about a month, but

they were daily. She has recently lost the ability to walk and talk,

due to med. toxicity. There is no known cause for her seizures and at

first they told me that she would grow out of it. Now, the prognosis

has changed dramatically. They always tell me to expect for her to get

worse and expect some form of mental retardation... which I will not.

We will do anything in our power to prevent that.

So anyway, we have recently been looking into HBOT. We think it

could be very promising for her, based on the research we have done.

Though we would do anything for our our daughter, money is tight. We

are in Kentucky and have Passport (Medicaid). If it is possible to get

this covered, I would love to hear how. I have always had a very

difficult time w/ Passport, even getting prescriptions refilled or

going out of state for treatment. Please help us find a way to

possibly get this covered. It would obviously be a tremendous help.

Thank you so much in advance for any help and we are eager to

here back.

Miranda Goranflo

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

Catch up on fall's hot new shows on TV. Watch previews, get listings,

and more!

September 13, 2007

Miranda,

So many of us are in the same boat. Thusfar some have been able to finangle

reimbursement, but certainly not the majority. This group is full of

parents who are tenacious fighters on behalf of their children---sounds like

you are a good fit!

HBOT has made a tremendous difference for Dawson, but I must say that doing

it in conjunction with a neurodevelopmental program is what we've found to

be the most effective. Giving input to the brain at the same time as giving

it the healing benefits of oxygen has been very powerful for us. I really

recommend looking into www.familyhopecenter.org They use hbot as part of

their program---but it's also so much more. They have a unique view of

seizures and I think you would really appreciate it.

To keep everything " above board " ---yes, I have been trained by FHC. No, I

do not get ANY payment for referring people to them. I pursued training

from them because I believe in their program and have seen it work so well.

I refer folks to them for the exact same reason.

At the very least, I would recommend that you read their website and give

them a call. I know they could help.

On 9/12/07, mirandag1981 <mirandag1981@...> wrote:

>

> Hi, my name is Miranda and I am writing in regards to my 4 y/o

> daughter, Hailey. She has had a severe case of epilepsy for 2 1/2

> years now. She had developed typically until the age of 2 1/2. We have

> tried a number of different things to help her over the years

> including 7 AED's, herbs (from an Amish dr.), a number of vitamin

> supp., chiropractors, cranio sacral, GFCF diet, and currently the

> ketogenic diet. Her diagnosis is generalized onset epilepsy. She

> currently has between 50-200 myoclonic seizures per day, down from

> about 500. She also has tonic clonic seizures, but those have been

> pretty well controlled lately, has not had one for about a month, but

> they were daily. She has recently lost the ability to walk and talk,

> due to med. toxicity. There is no known cause for her seizures and at

> first they told me that she would grow out of it. Now, the prognosis

> has changed dramatically. They always tell me to expect for her to get

> worse and expect some form of mental retardation... which I will not.

> We will do anything in our power to prevent that.

> So anyway, we have recently been looking into HBOT. We think it

> could be very promising for her, based on the research we have done.

> Though we would do anything for our our daughter, money is tight. We

> are in Kentucky and have Passport (Medicaid). If it is possible to get

> this covered, I would love to hear how. I have always had a very

> difficult time w/ Passport, even getting prescriptions refilled or

> going out of state for treatment. Please help us find a way to

> possibly get this covered. It would obviously be a tremendous help.

> Thank you so much in advance for any help and we are eager to

> here back.

>

> Miranda Goranflo

>

--

Donna Bateman

Neurodevelopmental Specialist

www.parentswithpurpose.com

Mom to 23, Katy 21, Preston 18, Annie 16, Kent 14, Callie 11 (cured

from dyslexia), Carson 9, Dawson 7 (brain injured--was severe now mild!)

September 13, 2007

Dear Hailey's Mom,

Welcome to the group. Have you read through all the

pdfs you received upon joining? That's really where you need to start.

Seizures generally occur from hyper-perfusion, or excessive blood

flow to one area of the brain. Because cerebral blood flow and brain

metabolism are coupled, Hailey's brain is overloaded in the one

section or place--thus the hyper-functioning of her brain, i.e.,

seizures.

While HBOT forces the growth of new capillaries, it also smooths out

the cerebral blood flow and eliminates the hyper-perfusion, creating

more regular blood flow. This has been documented a number of times

and can be documented for Hailey herself if she receives SPECT-scan

imaging before/after HBOT.

SPECT is a functional brain imaging technique that measures cerebral

blood flow. A good resource is Dr. Uszler's website at http://

www.DrSPECTscan.com .

A short answer as to whether Medicaid/Passport should cover HBOT:

Yes. Absolutely. However, in order for this to occur as expeditiously

as possible, it's critical that you understand the battlefield on

which you're entering.

You should have received a series of pdf files upon joining the

group. Please take the time, invest the time, to read each and every

one. You do have some institutional barriers to overcome, and

sometimes it can seem impossible, but it is not. If you look

in

medicaid/files/ ,

you'll find documentation from 18 states who now cover off-label HBOT

for pediatric brain-injury.

That's 1700% more states than when this group started just a few

years ago when it was just one, Virginia.

While you can learn about HBOT here just like on other HBOT groups,

the bigger problem for most families is figuring out how to pay for it.

It turns out that most disabled children automatically qualify for

Medicaid. Not only that but Medicaid--for children--EPSDT--was

specifically created to help disabled children access nontraditional

interventions. Even if something is considered " experimental and

investigational, " under Federal law, state Medicaid agencies are

required to pay for it if " it " is determined " necessary to correct or

ameliorate. "

That's not " medically necessary to correct or ameliorate, " just

" necessary to correct or ameliorate. " There's a huge difference, and

it's explained in your pdfs. Please read them.

Now, the Kentucky Passport folks most likely do not even know what

the Federal law states. That's why they're already giving you a hard

time about the prescriptions. This is why it's critical for Hailey

for you to know what the law states because you're going to have to

educate the Passport people. Many times the state Medicaid folks have

caved in once they realize they're dealing with somebody who really

does know what they're talking about.

That would be you, once you've educated yourself on how your state's

system now works and how it's supposed to really work.

DF

[ ] new to group

>

> Hi, my name is Miranda and I am writing in regards to my 4 y/o

>daughter, Hailey. She has had a severe case of epilepsy for 2 1/2

>years now. She had developed typically until the age of 2 1/2. We have

>tried a number of different things to help her over the years

>including 7 AED's, herbs (from an Amish dr.), a number of vitamin

>supp., chiropractors, cranio sacral, GFCF diet, and currently the

>ketogenic diet. Her diagnosis is generalized onset epilepsy. She

>currently has between 50-200 myoclonic seizures per day, down from

>about 500. She also has tonic clonic seizures, but those have been

>pretty well controlled lately, has not had one for about a month, but

>they were daily. She has recently lost the ability to walk and talk,

>due to med. toxicity. There is no known cause for her seizures and at

>first they told me that she would grow out of it. Now, the prognosis

>has changed dramatically. They always tell me to expect for her to get

>worse and expect some form of mental retardation... which I will not.

>We will do anything in our power to prevent that.

> So anyway, we have recently been looking into HBOT. We think it

>could be very promising for her, based on the research we have done.

>Though we would do anything for our our daughter, money is tight. We

>are in Kentucky and have Passport (Medicaid). If it is possible to get

>this covered, I would love to hear how. I have always had a very

>difficult time w/ Passport, even getting prescriptions refilled or

>going out of state for treatment. Please help us find a way to

>possibly get this covered. It would obviously be a tremendous help.

> Thank you so much in advance for any help and we are eager to

>here back.

>

> Miranda Goranflo

>

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770-491-6776 (phone)

404-725-4520 (cell)

815-366-7962 (fax)

mailto:david@...

fearlessparents/

http://www. .com

http://www.davidfreels.com

September 13, 2007

Sue,

Yes, she has been on the keto diet now for 3 months at a 4:1 ratio. We are a

part of the keto support group. We have seen some improvement, but not as

much as we would like. She is also on Keppra and Klonopin. She gets lots of

O.T., P.T. and speech. She is currently seeing a chiropractor and also gets

cranio sacral therapy. We are also trying several other massage tecniques w/

her. Do you have a little one on the diet?

Miranda

Sue DuPart <gaduparts@...> wrote: Have you

tried the ketogenic diet ? Sue