Re: encephalopathy....new diagnosis

[Guest guest]

My son received a diagnosis of static encephalopathy for the same reasons.

He had a head trauma as a baby (minor, probably not the cause of his speech

and language stuff, but you can't say it wasn't.) The neuro psych thought

it would get us better coverage. We have since moved and his new doctor

wasn't comfortable using that diagnosis because he has been making

progress. I pointed out that his progress was just in articulation and

speech production and that his language has been fairly static. We're going

through prior auth now and I haven't seen the referral so I don't know what

she ended up using.

Since his diagnosis I have heard of several other kids getting that

diagnosis or static encephalopathy tagged on with other things. It can mean

something very mild or something extremely severe. Basically what it is is

an injury to the brain which is static or not changing. It doesn't mean

that the child won't respond to therapy which is why therapies are supposed

to be covered with this diagnosis.

Miche

On Fri, Mar 7, 2008 at 7:22 PM, Tara Romanowich <tvromanowich@...>

wrote:

> We saw our neurologist today. My daughter, who will be 3 next week,

> currently has a diagnosis of global apraxia (not walking or speaking yet) We

> asked him for a different diagnosis...one insurance companies would take

> more seriously, so encephalopathy is what we got. He felt certain this would

> help us. Does anyone else's child have this diagnosis and if so, has it

> helped you to get more funding for services through your insurance company?

> Thanks. tara in NJ

>

[Guest guest]

My son was diagnosed with Encephalopathy by a neurologist and it initially did

get part of his speech and OT eval covered by insurance. He also has autism but

the goal of this diagnosis was to secure services as out insurance is self

funded (AB88 does not apply). He was diagnosed with Encephalopathy due to

being very sick with Meningitis. It is a serious but somewhat generic diagnosis

that seems to garner a higher level of benefits with insurance companies. We

have not had luck getting the actual speech therapy covered though as our SLP

will diagnoses the disorder as speech apraxia, oral apraxia and abnormal

auditory perception. Staying away from any " developmental " codes may be helpful

in getting coverage also. (315.32, 315.39, 315.31)

Best of luck.

Tara Romanowich <tvromanowich@...> wrote:

We saw our neurologist today. My daughter, who will be 3 next week,

currently has a diagnosis of global apraxia (not walking or speaking yet) We

asked him for a different diagnosis...one insurance companies would take more

seriously, so encephalopathy is what we got. He felt certain this would help us.

Does anyone else's child have this diagnosis and if so, has it helped you to get

more funding for services through your insurance company? Thanks. tara in NJ

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

You have to be very careful when you get a diagnosis. Once you get

services for your child, and they have a label such as autism etc...

that label follows them to the school system. You may be really

hindering your child if you are just trying to get free money.

Sadly, many parents do this so they can profit on their child at

their child's expense.

>

> We saw our neurologist today. My daughter, who will be 3 next

week, currently has a diagnosis of global apraxia (not walking or

speaking yet) We asked him for a different diagnosis...one insurance

companies would take more seriously, so encephalopathy is what we

got. He felt certain this would help us. Does anyone else's child

have this diagnosis and if so, has it helped you to get more funding

for services through your insurance company? Thanks. tara in NJ

>

>

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

> Be a better friend, newshound, and know-it-all with

Mobile. Try it now.

>

>

[Guest guest]

Unfortunately, the system is such that a child needing service is simply not

enough to secure them. You need to do whatever you can to make sure that your

child gets the assistance they need to move ahead. The school district has no

access to medical records, if a parent has signed consent to share info with the

district this is remedied by simply revoking consent in writing.

Having an autism diagnosis was beyond our control, sadly this is a completely

accurate diagnosis for my son but I know many parents who have kids who

desperately need various therapies and were not able to get an ounce of support

from the regional center, school district or insurance without it. My son would

not be where he is today had he not recieved those much needed ABA, speech and

Ot services. No parent wants to have their child labeled. To say that a parent

will " profit " from a child's diagnosis is extremely harsh and judgmental when

you have no idea of various family dynamics and situations.

suzika13 <suzika13@...> wrote:

You have to be very careful when you get a diagnosis. Once you get

services for your child, and they have a label such as autism etc...

that label follows them to the school system. You may be really

hindering your child if you are just trying to get free money.

Sadly, many parents do this so they can profit on their child at

their child's expense.

>

> We saw our neurologist today. My daughter, who will be 3 next

week, currently has a diagnosis of global apraxia (not walking or

speaking yet) We asked him for a different diagnosis...one insurance

companies would take more seriously, so encephalopathy is what we

got. He felt certain this would help us. Does anyone else's child

have this diagnosis and if so, has it helped you to get more funding

for services through your insurance company? Thanks. tara in NJ

>

>

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

> Be a better friend, newshound, and know-it-all with

Mobile. Try it now.

>

>

[Guest guest]

Hi Tara,

I like that dx -- I'm pretty sure the insurance companies will give

you more coverage. AND I'm pretty sure that is the dx that got my

sister's insurance company to pay for HBOT, which might really

benefit your daughter. She looked back in her records to confirm the

payment recently, and she noticed that she switched insurance

companies halfway through and both covered it at a rate of 95%. It

is a well-researched, mainstream therapy option for encephalopathy.

Just confirm that your insurance will pay beforehand. And also, they

are probably more likely to pay if it is done in a facility vs. with

a home rental.

HBOT is mentioned on Dr. Freedenfeld's website, so I pretty sure he

does it. If you need a referral to a doctor around here, he might be

able to point you in the right direction. I am going to part of the

DAN conference, so maybe I'll pick up some info. there, too.

in NJ

>

> We saw our neurologist today. My daughter, who will be 3 next

week, currently has a diagnosis of global apraxia (not walking or

speaking yet) We asked him for a different diagnosis...one insurance

companies would take more seriously, so encephalopathy is what we

got. He felt certain this would help us. Does anyone else's child

have this diagnosis and if so, has it helped you to get more funding

for services through your insurance company? Thanks. tara in NJ

>

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

>

[Guest guest]

I think with so many kids " labeled " these days, the school districts

are (generally speaking) less likely to limit your child forever

based on a dx at three years old. With so many kids in need, they

want to give less help, not more.

Also, this is a private medical dx, not one given or even known about

by the school district. No one need ever know about this dx, and the

doctors can only share it with permission and with the insurance

company. Like school districts, insurance companies are not looking

to make you keep an expensive dx longer than necessary.

And finally, my sister and I both are of the opinion that we'll worry

about being limited by a label when the label no longer applies. To

refuse to seek every medical treatment, therapy, or educational

opportunity to avoid being pre-judged five years from now is

irresponsible!

To suggest that Tara is trying to PROFIT from her daughter's medical

condition is rude and insulting. She is trying to heal her daughter

just like the rest of us. Please choose your words more carefully in

the future.

in NJ

>

> You have to be very careful when you get a diagnosis. Once you get

> services for your child, and they have a label such as autism

etc...

> that label follows them to the school system. You may be really

> hindering your child if you are just trying to get free money.

> Sadly, many parents do this so they can profit on their child at

> their child's expense.

[Guest guest]

<<You may be really hindering your child if you are just trying to

get free money. Sadly, many parents do this so they can profit on

their child at their child's expense.>>

???????????????????????????????

" get free money? "

" profit on their child? "

There's no " profit " to parents when getting insurance companies to

reimburse expenses needed to treat their special needs children.

And, surely you cannot actually mean that reimbursement for

necessary expenses that parents paid on behalf of their children

equals " free money, " particularly when most times exorbitent

premiums have been paid for many many years?

> >

> > We saw our neurologist today. My daughter, who will be 3 next

> week, currently has a diagnosis of global apraxia (not walking or

> speaking yet) We asked him for a different diagnosis...one

insurance

> companies would take more seriously, so encephalopathy is what we

> got. He felt certain this would help us. Does anyone else's

child

> have this diagnosis and if so, has it helped you to get more

funding

> for services through your insurance company? Thanks. tara in NJ

> >

> >

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

> > Be a better friend, newshound, and know-it-all with

> Mobile. Try it now.

> >

> >

[Guest guest]

In our case the schools ignored the static encephalopathy diagnosis as they

considered it completely medical and not well defined. They said it's

something they see doctors adding to help get insurance to qualify for

services. They used the autism (which they also didn't agree with, but it's

the only way he qualifies for a para) and apraxia and mixed

receptive-expressive language diagnoses.

Miche

On Fri, Mar 7, 2008 at 11:08 PM, suzika13 <suzika13@...> wrote:

> You have to be very careful when you get a diagnosis. Once you get

> services for your child, and they have a label such as autism etc...

> that label follows them to the school system. You may be really

> hindering your child if you are just trying to get free money.

> Sadly, many parents do this so they can profit on their child at

> their child's expense.

>

> >

> > We saw our neurologist today. My daughter, who will be 3 next

> week, currently has a diagnosis of global apraxia (not walking or

> speaking yet) We asked him for a different diagnosis...one insurance

> companies would take more seriously, so encephalopathy is what we

> got. He felt certain this would help us. Does anyone else's child

> have this diagnosis and if so, has it helped you to get more funding

> for services through your insurance company? Thanks. tara in NJ

>

[Guest guest]

If it helps this thread a local girl was dx with epilepsy and

dyspraxia. She could speak but had crossing the midline stuff (still

does actually) and receptive language issues after shots (not at all

implying this is what is seen here....telling the story to address

the label issue). Some of her stuff had been seen in the family in

different members but not all the same person like her. She is celiac

it seems now according to the docs and mom has her off milk for now

based on doc's orders. Likely not an allergy but they are trying to

fix her gut impairment from prophylactic antibiotics given for kidney

stuff they now think was caused by unaddressed celic. Celiac and

antibiotics and shots may be the cause of her problems the medical

team thinks but it is not like she goes on this diet and is

immediately healed. What they have seen though is a better expressive

and more importantly, receptive speech ability and a firm

recollection of all prior therapy so she really " gets " things now. At

the school she still has the labels and to be on the safe side the

school is providing an aide next year as she starts kindergarten. No

one knows whether things will fully improve and she will lose a label

but at least in this case the school is working with the mom and the

teacher and school OT are thrilled at her progress. The OT actually

wrote a letter to her neuro saying that in 25 years she has never

seen something like this and it pleases her greatly. It is possible

for schools to follow your story and look to do the accommodation

that fits, drop labels, etc. when warranted. This mom is pretty

reasonable and go with the flow. I think that made them want to help.

> >

> > You have to be very careful when you get a diagnosis. Once you

get

> > services for your child, and they have a label such as autism

> etc...

> > that label follows them to the school system. You may be really

> > hindering your child if you are just trying to get free money.

> > Sadly, many parents do this so they can profit on their child at

> > their child's expense.

>

[Guest guest]

How ignorant.

> > >

> > > We saw our neurologist today. My daughter, who will be 3 next

> > week, currently has a diagnosis of global apraxia (not walking or

> > speaking yet) We asked him for a different diagnosis...one

insurance

> > companies would take more seriously, so encephalopathy is what we

> > got. He felt certain this would help us. Does anyone else's child

> > have this diagnosis and if so, has it helped you to get more

funding

> > for services through your insurance company? Thanks. tara in NJ

> >

>

>

>

[Guest guest]

Hi Tara and welcome!

While I don't agree with Suzi that parents seek out diagnosis for own

financial gain reasons, I believe parents seek out these diagnosis

for treatment reasons, I too would not label my child with a

diagnosis that is not appropriate just to secure services. In

addition I as well as many others used the apraxia diagnosis and got

our child's therapy covered by our insurance -and there is an entire

chapter of The Late Talker book including letters to show how. There

is also constant support here from parents and professionals that can

answer questions and offer help.

If encephalopathy, mental retardation, or autism etc. was not the

diagnosis of my child -I for one would not allow anyone to diagnose

either of my boys with it. I went to the other extreme in that I did

not auto accept any diagnosis and sought out second opinions to

confirm or deny. When your child gets to school age this happens

often that labels are used that are not appropriate which leads to

inappropriate placement and therapy down the road.

Fight for appropriate diagnosis and appropriate therapy.

Not only for the obvious reasons already stated -but also there are

certain diagnosis that put one at risk for securing insurance down

the road once. Not sure if encephalopathy is one of them -but good

for one who secures their child with this diagnosis to find out-

especially if it's linked to being degenerative. Insurance companies

apparently are even checking facebook and myspace pages to deny

coverage.

http://www.law.com/jsp/article.jsp?id=1201779829458

" Approximately half of children infected with HIV at birth will have

a condition called encephalopathy "

http://rileychildrenshospital.com/parents-and-patients/living-with-hiv/hiv-insur\

ance.jsp

And this mentions the word " degenerative " Apraxia is not

degenerative.

" Encephalopathy literally means disease of the brain. It is a brain

malfunction in the face of systemic metabolic derangements due to

cardiopulmonary, mitochondrial, renal, hepatic or endocrine disease.

In medical jargon it can refer to a wide variety of degenerative

brain disorders with very different etiologies, prognoses and

implications. For example, prion diseases, all of which cause

transmissible spongiform encephalopathies, are nearly always fatal

and have an infectious origin, but other encephalopathies are

reversible and can be caused by deficiency, toxins, and several other

causes. "

http://en.wikipedia.org/wiki/Encephalopathy

" What is the prognosis?

Treating the underlying cause of the disorder may improve symptoms.

However, the encephalopathy may cause permanent structural changes

and irreversible damage to the brain. Some encephalopathies can be

fatal.

http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm

=====

[Guest guest]

I agree about getting the correct diagnosis. This sounds like it is

an insurance issue. If insurance is through a company you work

through, someone has posted in the past that you can talk to the

employer about coverage and they might be able to help. Therapist

putting in the incorrect codes when sending the bill to the insurance

could also cause a problem. The developmental codes could cause the

problem. At three, the school district should be helping with

services Speech and Occupational therapies. Some therapists will

even work with you on cost. Our insurance is paying less than some

other insurances pay, but our private therapist was fine with the

amount the insurance company would pay. Not sure if this is

everywhere, but here in GA there is a Becket waiver to apply

for after social security has denied you. Hopefully you can still

keep the correct diagnosis of global apraxia/dyspraxia and look other

places to help solve the problem with the insurance company. Or

possibly change insurance companies--I have seen some posts about

changing insurance companies also.

Tina

>

> Hi Tara and welcome!

>

> While I don't agree with Suzi that parents seek out diagnosis for

own

> financial gain reasons, I believe parents seek out these diagnosis

> for treatment reasons, I too would not label my child with a

> diagnosis that is not appropriate just to secure services. In

> addition I as well as many others used the apraxia diagnosis and got

> our child's therapy covered by our insurance -and there is an entire

> chapter of The Late Talker book including letters to show how.

There

> is also constant support here from parents and professionals that

can

> answer questions and offer help.

>

> If encephalopathy, mental retardation, or autism etc. was not the

> diagnosis of my child -I for one would not allow anyone to diagnose

> either of my boys with it. I went to the other extreme in that I

did

> not auto accept any diagnosis and sought out second opinions to

> confirm or deny. When your child gets to school age this happens

> often that labels are used that are not appropriate which leads to

> inappropriate placement and therapy down the road.

>

> Fight for appropriate diagnosis and appropriate therapy.

>

> Not only for the obvious reasons already stated -but also there are

> certain diagnosis that put one at risk for securing insurance down

> the road once. Not sure if encephalopathy is one of them -but good

> for one who secures their child with this diagnosis to find out-

> especially if it's linked to being degenerative. Insurance

companies

> apparently are even checking facebook and myspace pages to deny

> coverage.

> http://www.law.com/jsp/article.jsp?id=1201779829458

>

> " Approximately half of children infected with HIV at birth will have

> a condition called encephalopathy "

> http://rileychildrenshospital.com/parents-and-patients/living-with-

hiv/hiv-insurance.jsp

>

> And this mentions the word " degenerative " Apraxia is not

> degenerative.

>

> " Encephalopathy literally means disease of the brain. It is a brain

> malfunction in the face of systemic metabolic derangements due to

> cardiopulmonary, mitochondrial, renal, hepatic or endocrine disease.

> In medical jargon it can refer to a wide variety of degenerative

> brain disorders with very different etiologies, prognoses and

> implications. For example, prion diseases, all of which cause

> transmissible spongiform encephalopathies, are nearly always fatal

> and have an infectious origin, but other encephalopathies are

> reversible and can be caused by deficiency, toxins, and several

other

> causes. "

> http://en.wikipedia.org/wiki/Encephalopathy

>

> " What is the prognosis?

>

> Treating the underlying cause of the disorder may improve symptoms.

> However, the encephalopathy may cause permanent structural changes

> and irreversible damage to the brain. Some encephalopathies can be

> fatal.

> http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm

>

> =====

>

[Guest guest]

I think it's pretty harsh to say one is profiting on their child at their

child's expense. I know for us, our insurance specifically states it WILL

NOT cover apraxia. No ands, ifs or butts in the matter. No appeal, etc.

The insurance company considers apraxia a childhood illness that the child

will grow out of. If it did cover, we would still be liable for the $20.00

copay. So, we are in therapy, paying out of pocket. Comes to $100.00 a

week. We are very fortunate in that we can afford this for our daughter.

We'd like to have her in for 2x a week, but we can't afford that. By paying

the copay only, we would not be profiting on our child's expense. For us,

if we could get insurance to pay, we'd have her in 2x a week, paying out of

pocket for one and insurance copay for the other.

Some people may need " free money " as you call it. And guess what, it's not

free...we pay for our insurance, they should be providing these services.

Insurance companies are really out of touch with so many kids needing these

services and they refusing to pay. If the only way to get them to pay is

label it something else, and the neurologist is comfortable with that, than

more power to them. Our SLP said many insurance companies refuse to pay for

speech because it's one of the very few therapies that gets paid 100%. Most

of the others, like OT only get a small fraction of the invoiced price.

From: suzika13

Date: 3/8/2008 5:49:38 AM

Subject: [ ] Re: encephalopathy....new diagnosis

You have to be very careful when you get a diagnosis. Once you get

services for your child, and they have a label such as autism etc...

that label follows them to the school system. You may be really

hindering your child if you are just trying to get free money.

Sadly, many parents do this so they can profit on their child at

their child's expense.

>

> We saw our neurologist today. My daughter, who will be 3 next

week, currently has a diagnosis of global apraxia (not walking or

speaking yet) We asked him for a different diagnosis...one insurance

companies would take more seriously, so encephalopathy is what we

got. He felt certain this would help us. Does anyone else's child

have this diagnosis and if so, has it helped you to get more funding

for services through your insurance company? Thanks. tara in NJ

>

>

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

> Be a better friend, newshound, and know-it-all with

Mobile. Try it now.

>

>

[Guest guest]

Actually I wouldn't be surprised if the insurance companies now are

claiming that they won't cover apraxia since it's a childhood

disorder. Isn't that funny when just a few years ago apraxia

didn't " exist " in pediatrics which is why they came up with

developmental to separate it from the acquired apraxia adults are

diagnosed with. Thing is how does anyone know for sure apraxia

can't be acquired in children. Sure some may be born with it but Tanner wasn't

as

he regressed and lost skills at 11 months old- right after 2 weeks

of high fevers –and speaking of vaccines –we found out when we moved

to Florida because back then we didn't suspect vaccines -but right

after his 3rd Hep B shot –and this was back in 1997 prior to heroes

like Sallie Bernard and others having the thimerosal removed.

Tanner not only lost sounds (most obvious to Glenn was " da da " ) but

in photos you can actually see the low tone change -around his eyes

the most but in his body too. Many today that know Tanner view his

apraxia as acquired -and again until we know why there are this many

kids with a diagnosis that used to be rare -none of us know.

If you check the archives -even though we don't know where it came

from or if it was acquired -many of us were smart and learned not to

use the name " DAS " or developmental apraxia of speech due to the

problems of the insurance companies using it against us. Why cover

a disorder when it's " developmental " ? So yes for a few years we

just called it apraxia and got coverage.

So why a few years later would anyone start calling apraxia –the

condition where one breaks down the longer the utterance the longest

diagnosis name ever - " childhood apraxia of speech " We got rid of

developmental before the word apraxia –we need to do the same with

the word childhood. And why add " of speech " after the diagnosis

name apraxia as we know apraxia is more of a syndrome today –don't

we?! Many have motor planning issues in the body that have verbal

or oral apraxia.

Now that autism and apraxia are being morphed together more and more

will those that lost speech due to autism be diagnosed as having

childhood autism of speech?! Don't think so. So for those of you

with children with apraxia today -for many reasons from insurance to

your child's future as a teen and adult etc. Unless you are 100%

sure that apraxia will be cured in the childhood years -which none

of us knows (right Janice and Robin and others of teens/adults in this

group) don't label a child with a diagnosis name that can bite him

today for insurance and tomorrow when he's no longer a " child " .

The free money comment –that's so out there it had to be

misinterpreted by us. Whomever wrote that can you please explain

what you meant? Anyone who has a child with apraxia or autism knows

that even with coverage through insurance –and even with services

through early intervention or the school –that doesn't cover

anywhere close to everything. We as parents still ending up paying

out of pocket for at least hundreds of dollars a month extra on top

of our other expenses. Here's a comment I'll always remember from

Stacey who used to be our " notes in crayon " secretary for CHERAB

when we used to meet in person (long story but you kind of know why

we called her that!) about where she spent her summer vacation due

to her apraxic child.

" As for the summer, I have a deposit at a regular day camp, Harbor

Hills,

in Randolph. I have him signed up for 3 full days. He will have

swimming,

cooking, nature, arts and crafts, zip line, sports instruction, a

beautiful

playground, and 7-10 kids in a group. Sounds absolutely perfect,

right? It

will cost us a fortune so we will be vacationing on our deck! I

will have

him do speech therapy on the off days. "

Stacey also summed up the feelings of what many of us go through

years ago. The last thing any of us need is blame on top of the

following:

" Dear Holly and Pat:

Welcome, both of you, to our list. You have come to the right

place! It

seems you are both on your way to helping your apraxic child to

overcome

their difficulties. You are right to say it is an uphill battle.

Unlike a

regular child, the decisions you make for your " special " child can

affect

him/her for the rest of their lives. I find I AGONIZE over every

decision I

make for my Evan (3.2). Which school, which therapists, which

extracurricular activities, which summer camp, should he be with

typical or

special kids ... these are just a few of the questions that we

wrestle with

everyday. A support group or list is a great way to bounce your

ideas off of

other people in the same place as you, not to mention the

professionals

lurking. You can gather information here or just dump. We will

always be

here to listen.

I heard Rick LaVoie speak last night at Summit Middle School and the

last

part of his lecture was devoted to the family, particularly how

finding out

that your child has a " need " affects your marriage. He described

how we all

start at denial (not my child) and work our way to acceptance. The

journey

takes us through a whole slew of emotions including anger (why my

kid), fear

(what will the future bring), mourning (if only it were different),

isolation

(I am the only one who understands my child and I have to shield him

from the

world), blame (not my side of the family), guilt (if only I had done

something different), envy (look at how easy it is for those other

kids) ...

just to name a few. The problem in our relationships is that the

father

usually stays in denial longer and than the mother and experiences

the stages

at different times. The support is not always there for one partner

or the

other when it is needed. It can definitely put a strain on the

relationship!! I hope that getting this out in the open can maybe

help

people to understand how their spouse is feeling and make all of

this a

little easier!

Stacey Abenstein "

=====

[Guest guest]

>

> You have to be very careful when you get a diagnosis. Once you get

> services for your child, and they have a label such as autism etc...

> that label follows them to the school system. You may be really

> hindering your child if you are just trying to get free money.

> Sadly, many parents do this so they can profit on their child at

> their child's expense.

You know, I'm so tired of people making this old, tired

PREJUDICIAL argument and using it as an excuse to deny aid to " them " .

(whatever group of people they want to feel better than) If there is

an ounce of truth in your statement, SHOW US THE STATISTICS OR SLINK

OFF SOMEWHERES ELSE WITH YOUR POISON!

[Guest guest]

But here's the thing- it's NOT just a childhood disorder! Those here on

this list that are also on the Dyspraxia list can say that without a doubt it's

not just a childhood thing. There are teens and adults out there living with

this disorder-- but the one difference I've seen is that those older people

living with the disability were never really treated and helped (therapies,

interventions etc). So it's not something that kids just outgrow-- that would

be if it was a DEVELOPMENTAL delay, but the research and the diagnosis

itself outright says it's a MOTOR PLANNING DISORDER. The nature of a motor

planning problem doesn't just get outgrown-- so it's an oxy moron for the

insurance

companies to say that it's a childhood disorder. This is something that just

burns me BADLY!!!! It frustrates me to no end because it doesn't make any

MEDICAL sense whatsoever. They need to be corrected in this matter-- and FAST!

Becky

In a message dated 3/9/2008 1:16:40 A.M. Eastern Daylight Time,

kiddietalk@... writes:

Actually I wouldn't be surprised if the insurance companies now are

claiming that they won't cover apraxia since it's a childhood

disorder

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Well, this isn't precisely correct. It's been around for SEVERAL years---

but here in America, they didn't happen to know about it. Over in the UK it's

known as DYSPRAXIA and it's been around for quite a while. So it was there,

but American Drs, for some reason didn't want to ACKNOWLEDGE it was there!

becky

In a message dated 3/9/2008 1:16:40 A.M. Eastern Daylight Time,

kiddietalk@... writes:

Isn't that funny when just a few years ago apraxia

didn't " exist " in pediatrics which is why they came up with

developmental to separate it from the acquired apraxia adults are

diagnosed with

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

<sigh> I know-- I HATE hearing that one myself! Especially considering

that Asa started out with an ORTHOPEDIC disease called Blount's Disease, and

this is before any of the Apraxia issues surfaced, and is a REAL ortho issue---

etc-- then he got treated and it was corrected with the braces, but then it's

evident by this time that it's motor planning and neurological at THIS stage

of the game. Anyhoo-- the poor child is always falling down and walking into

walls, and getting severely hurt or moderately hurt etc. It breaks my

heart-- so when I hear the whole " clumsy child CRAP " (lol) it just bugs me to

no

end!

Did I ever get around to telling all of you of the latest Neurological appt

with the Ped Neuro and things that this man said?

Becky

In a message dated 3/10/2008 1:20:09 P.M. Eastern Daylight Time,

kiddietalk@... writes:

Oh and PS -dyspraxia used to be known as " clumsy child syndrome! "

Talk about a horrible name for a diagnosis!

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Becky I so agree with you. I know that dyspraxia has been around

much longer -and you are also correct about the problems with the

insurance companies. I wasn't giving my opinion however -when Tanner

was first diagnosed 8 years ago SLPs used to doubt it was even

a " real " diagnosis which why I had it in the quotes. Back then it

wasn't called childhood apraxia of speech -someone came up with that

beauty just a few years ago. It used to only be called developmental

apraxia...or developmental apraxia of speech/DAS. I'll never forget

when one adult called me who grew up with apraxia and he was very

hard to understand and told me that he had " developmental apraxia "

and I said to him " don't ever say the word developmental

anything at this point -you are over 20 years old! Just say you

have " apraxia " Also there was no mention at all about pediatric

apraxia in any pediatric medical material as there is today.

Oh and PS -dyspraxia used to be known as " clumsy child syndrome! "

Talk about a horrible name for a diagnosis!

Here's an archive on more:

Re: Question..

When Tanner was first diagnosed a alittle over 8 years ago in NJ the

SLP said " apraxia " but wrote down apraxia and dyspraxia and said they

mean the same thing.

Here's an archive on more to explain:

Re: Apraxia vs Dyspraxia

Hi Louise and welcome again!

Don't be confused, I think I can explain. The confusion stems from

the definition of adult 'a'praxia vs. 'dys' praxia. In reality our

children are mainly dyspraxic and not apraxic -but communication

impairments don't deal in reality yet or the world would be aware

that most late talkers are not learning disabled and/or autistic.

The medical community is just starting to get involved in

communication impairments outside of hearing, and outside of

autism. Up till now your child will be diagnosed or not with a

variety of speech and language impairments which may or may not be

accurate or appropriate. PDD NOS/history of apraxia most likely if

you live in

California, Speech Language Impaired if you see a PhD studying SLI,

more times apraxia than dyspraxia if you live in New Jersey, (they

are used interchangeably however) and dyspraxia if you like in the

UK.

or...

http://www.cherab.org/information/adhd-speech.html

It's best to go for more than one opinion, and keep a close eye on

your child's progress to make sure the therapies are appropriate.

If your child isn't progressing -the diagnosis may be inaccurate -or

quite possibly since impairments tend to overlap -another underlying

communication impairment isn't being addressed. For example -

dysarthria (weakness) with apraxia!

Don't be confused -just remember that a late talker by any other

name is still not talking yet. Our job as those that care for them

is to help bring them a voice -and stamp out " whatchamacallit "

I have two archived messages below on the names game:

From: " kiddietalk " <kiddietalk@...>

Date: Tue Aug 12, 2003 11:59 am

Subject: Re: angry -apraxia/dyspraxia diagnosis

Deborah is right overall -however apraxia/dyspraxia in the US is the

reversible diagnosis -a child can be diagnosed with dyspraxia 'or'

apraxia, and to many professionals in the US it means the same

thing. In fact Tanner's first SLP diagnosis of apraxia was " I believe

Tanner has apraxia -or dyspraxia -they mean the same thing " and when

I asked her to spell that so I could look it up she wrote on a

little yellow stickie paper for me " dyspraxia apraxia "

I read all the " definitions " of apraxia or dyspraxia, including how

one means motor planning problems of the body -but can affect

speech " dyspraxia " and one means motor planning problems of speech

which can affect body movement " apraxia " which sounded the same to

me but I'm not an expert (and the craziness of those who then add

words like " childhood " or " developmental " in front of

apraxia/dyspraxia, and " of

speech " after which makes it even more confusing since it implies

that once your child grows to become a teenager and then an adult he

will need to keep updating his diagnosis, and that if it also

affects the body you need to say CASAB childhood apraxia of speech

and of body, TASAB teenage apraxia of speech and of body, and then

of course your child's grows old enough for AASAB...well you get the

point!)

In short to know for sure what the diagnosis means -check with the

person that diagnosed your child and ask them to clarify! Once the

medical communities pick up the diagnosis of apraxia for once this

craziness will end! (and yes we are working hard at trying to make

this a reality!)

And for the person that listed all the definitions of apraxia found

on the internet -you forgot the only one from a medical doctor, my

co author of The Late Talker neurodevelopmental pediatrician Dr.

Marilyn Agin -which is very important for us as parents for many

reasons not limited to insurance -but for advocacy -awareness etc.

http://www.cherab.org/information/aginmdapraxia.html

=====

[Guest guest]

Dyspraxia has always been our official dx, because by the time we got

it he was speaking. Our doctor considers apraxia to mean no speech

and dyspraxia to mean dysfunctional speech.

in NJ

>

> Well, this isn't precisely correct. It's been around for SEVERAL

years---

> but here in America, they didn't happen to know about it. Over in

the UK it's

> known as DYSPRAXIA and it's been around for quite a while. So it

was there,

> but American Drs, for some reason didn't want to ACKNOWLEDGE it

was there!

>

>

> becky

[Guest guest]

Becky,

Don't you notice that most of the adults who are older come from the UK, Europe

or densely populated cities? As I become more in tune with the chemical issues

surrounding dyspraxia, I really do 'see' this issue. In addition, most of the

adults that I read about are in their early 20's to early 30's and have only

seen one individual with sensory processing issues (from Montreal) who is in

their 50's. This person admits to being extremely chemically sensitive as well.

If I speak to Mark's recovery on the dyspraxia board, I often get called names

and abused by the adults with dyspraxia or other NDD's...... Let me just say

that the word 'cure' is a swear word on those boards! Blasphemy! Needless to

say I find this very daunting for I so wish that I could offer the adults some

direction toward recovery that is achievable.

I do believe that the age of the adults really does demonstrate the issues with

metal and chemical toxicity in our environment and how this is really a youthful

disease/disorder/delay (whatever is politically correct here).

The more and more I see with Mark and how he responds to the removal of toxins

generally in his environment, the more I see that he is truly a chemically

sensitive individual. My personal definition of dyspraxia changes with the

experiences that I have with my son.

This is so odd for me since I am such a tough nut...... nothing bothers me

chemically! I can handle pretty much anything and have a stomach of steel and

fumes don't annoy me in the least. This has been a true epiphany for me to

watch my child change back and forth in relation to his chemical exposure.

Now I just have to figure out how to toughen his system up so that he doesn't

have to live like the Boy in the Bubble for the rest of his life!

The dyspraxia is almost handled if we keep all of the toxins away, if he gets

exposed to too much for too long.... the symtpoms reappear.

Janice

[sPAM]Re: [ ] Re: encephalopathy....new diagnosis

But here's the thing- it's NOT just a childhood disorder! Those here on

this list that are also on the Dyspraxia list can say that without a doubt

it's

not just a childhood thing. There are teens and adults out there living with

this disorder-- but the one difference I've seen is that those older people

living with the disability were never really treated and helped (therapies,

interventions etc). So it's not something that kids just outgrow-- that would

be if it was a DEVELOPMENTAL delay, but the research and the diagnosis

itself outright says it's a MOTOR PLANNING DISORDER. The nature of a motor

planning problem doesn't just get outgrown-- so it's an oxy moron for the

insurance

companies to say that it's a childhood disorder. This is something that just

burns me BADLY!!!! It frustrates me to no end because it doesn't make any

MEDICAL sense whatsoever. They need to be corrected in this matter-- and FAST!

Becky

In a message dated 3/9/2008 1:16:40 A.M. Eastern Daylight Time,

kiddietalk@... writes:

Actually I wouldn't be surprised if the insurance companies now are

claiming that they won't cover apraxia since it's a childhood

disorder

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

None of this does. I have cord blood stored and no way to use it if

needed unless we have the right label for the right study.

>

>

>

>

> But here's the thing- it's NOT just a childhood disorder! Those

here on

> this list that are also on the Dyspraxia list can say that without

a doubt it's

> not just a childhood thing. There are teens and adults out there

living with

> this disorder-- but the one difference I've seen is that those

older people

> living with the disability were never really treated and helped

(therapies,

> interventions etc). So it's not something that kids just outgrow--

that would

> be if it was a DEVELOPMENTAL delay, but the research and the

diagnosis

> itself outright says it's a MOTOR PLANNING DISORDER. The nature of

a motor

> planning problem doesn't just get outgrown-- so it's an oxy moron

for the insurance

> companies to say that it's a childhood disorder. This is something

that just

> burns me BADLY!!!! It frustrates me to no end because it doesn't

make any

> MEDICAL sense whatsoever. They need to be corrected in this

matter-- and FAST!

>

>

> Becky

[Guest guest]

I;m saying that many people get county money... for diagnoses such

as autism purely for monetary gains. I'm saying that at a school

district level, you have to be careful of labels that may follow

forever. Encephalopathy for instance may box a child into having a

physical brain limitation.. not a temporary childhood condition.

And I'm not saying YOU do this but there are people out there who

get money from the state because there child has " autism " for

examople when truly the child is not autistic

[Guest guest]

Im not saying you do this... but yes people do do this.... Sometimes

unknowingly, sometimes purposely.. I just wanted people to consider

this

>

> Hi Tara and welcome!

>

> While I don't agree with Suzi that parents seek out diagnosis for

own

> financial gain reasons, I believe parents seek out these diagnosis

> for treatment reasons, I too would not label my child with a

> diagnosis that is not appropriate just to secure services. In

> addition I as well as many others used the apraxia diagnosis and

got

> our child's therapy covered by our insurance -and there is an

entire

> chapter of The Late Talker book including letters to show how.

There

> is also constant support here from parents and professionals that

can

> answer questions and offer help.

>

> If encephalopathy, mental retardation, or autism etc. was not the

> diagnosis of my child -I for one would not allow anyone to diagnose

> either of my boys with it. I went to the other extreme in that I

did

> not auto accept any diagnosis and sought out second opinions to

> confirm or deny. When your child gets to school age this happens

> often that labels are used that are not appropriate which leads to

> inappropriate placement and therapy down the road.

>

> Fight for appropriate diagnosis and appropriate therapy.

>

> Not only for the obvious reasons already stated -but also there are

> certain diagnosis that put one at risk for securing insurance down

> the road once. Not sure if encephalopathy is one of them -but good

> for one who secures their child with this diagnosis to find out-

> especially if it's linked to being degenerative. Insurance

companies

> apparently are even checking facebook and myspace pages to deny

> coverage.

> http://www.law.com/jsp/article.jsp?id=1201779829458

>

> " Approximately half of children infected with HIV at birth will

have

> a condition called encephalopathy "

> http://rileychildrenshospital.com/parents-and-patients/living-with-

hiv/hiv-insurance.jsp

>

> And this mentions the word " degenerative " Apraxia is not

> degenerative.

>

> " Encephalopathy literally means disease of the brain. It is a brain

> malfunction in the face of systemic metabolic derangements due to

> cardiopulmonary, mitochondrial, renal, hepatic or endocrine

disease.

> In medical jargon it can refer to a wide variety of degenerative

> brain disorders with very different etiologies, prognoses and

> implications. For example, prion diseases, all of which cause

> transmissible spongiform encephalopathies, are nearly always fatal

> and have an infectious origin, but other encephalopathies are

> reversible and can be caused by deficiency, toxins, and several

other

> causes. "

> http://en.wikipedia.org/wiki/Encephalopathy

>

> " What is the prognosis?

>

> Treating the underlying cause of the disorder may improve symptoms.

> However, the encephalopathy may cause permanent structural changes

> and irreversible damage to the brain. Some encephalopathies can be

> fatal.

>

http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm

>

> =====

>

[Guest guest]

My daughter may be autistic.. I don't want to push the label yet. I

am considering what the benefit of doing so may be.. she has

services from the regional center.. she is 2 1/2 and the services

she gets like speech, OT, feeding therapy are things she would get

no matter what label she has. I was cautioned by one of her

therapists who educated me one labels and the school system is all.

I f my daughter is autistic.. then fine. If shes not... I would not

want a beefed up label so that she may get some extra services and

attention. Also, some people truly want money and don't care about

their child.. I dont think its anyone who would be on a group

abou ttheir child's issues. Obviously those people probably care

> >

> > We saw our neurologist today. My daughter, who will be 3 next

> week, currently has a diagnosis of global apraxia (not walking or

> speaking yet) We asked him for a different diagnosis...one

insurance

> companies would take more seriously, so encephalopathy is what we

> got. He felt certain this would help us. Does anyone else's child

> have this diagnosis and if so, has it helped you to get more

funding

> for services through your insurance company? Thanks. tara in NJ