new to here and lots of questions!

[Guest guest]

I am just overwhelmed with all the info I've seen since finding this

group and the web site yesterday. I'm convinced my daughter has

aproxia and would appreciate any insite from parents that have

children with it whether they agree that this is her problem.

She was born in Sept. 1998 and was born 4lbs 12 oz and 2 weeks

early. No noticeable problems at first other than with nursing which

I attributed to her being so small. At 7 mths I realized she still

couldn't turn her head or roll over. At that point she started

physical therapy even though my pediatrician said she didn't need

it. Right before she turned a year old we moved out of town and she

was reevaluated and told she needed PT and OT. Now with a supportive

pedatrician. About 6 mths ago we again switched therapy providers

and went with one that works with the child in the home. They

dropped her out of OT and added Speech as she can only say

Mamama,Dadada, and ba (for bath) but even that comes and goes. For

the past 1.5 years she has had numerous tests included MRI's and has

been to neurologists, endocrinologist, nutricionist, and geneticist.

All trying to find out why she was so far delayed in developmental

milestones and why she wasn't growing. Was diagnosed with failure to

thrive but as far as the MRI's etc they all came back normal.

Currently she has learned to walk (started walking right before her

2nd b-day) is working on climbing steps, has her weight up to 19

pounds, and has been discharged from OT. As far as Speech we haven't

seen much difference even with therapy. We had tubes put in because

we were told she couldn't hear due to fluid back in January 2001 but

no big difference there either other than she is babbling more now.

(she was a totally silent child before, still silent for the most

part) Her ST thinks her speech problems have to due with the fluid

and ear tubes but that doesn't explain all her other problems.

Everyone has tried to come up with an explaination for each

individual problem but seeing this aproxia site is the first one that

I've found that explains all the problems with one thing. As opposed

to them guessing about her hearing, guessing that maybe she was a

preemie, guessing this and guessing that. You get my point I

think.....and now since she seems to be progressing well (other than

speech) they have just said oh well she'll be fine just keep on with

the speech and eventually she will get that too. But still no

explanations WHY she has had all these problems. Specific things

I've seen (as referred to in the letter to parents about Tanner) that

made me think that this may be the problem is her pickiness eating,

chewing straws to drink, pushing all her food in her mouth, the fact

it took a lot of effort to recently teach her how to stick her tongue

out, she can't blow bubbles or blow out candles, she is sensitive to

touch, and extremely clumsy though can walk now without falling

over. She does understand EVERYTHING we tell her and can do detailed

things such as work our VCR. We have also been told what a serious

child she is.

I told my mother in law, a RN, about the aproxia site but she said

that was just for stroke victims and she didn't think that that is

LeAnne's problem. But from everything I've read on the boards and in

the site I am convinced I've finally found out what her problem is.

Any suggestions? (ps her speech only sees her once a week for 45

min) Should I try to get her diagnosed with aproxia? Are her symtoms

similiar to the rest of you with children with aproxia? As you can

tell this is all new to me and any info would be appreciated!

Hannah, mom of LeAnne

[Guest guest]

apraxia is not just for adults...your mother-in-law must be thinking about

aphasia..That's as a result of a stroke. I am a SLP who has worked with

several students labled with apraxia. A book that I used as a therapy guide

stated that children with apraxia need speech therapy at least 4 times a

week, even if it is just 30 min. each session. Apraxia is defined as the

inability to voluntarily control your muscles. That's why your daughter had

trouble developing her motor skills. Sometimes, when children are born

early or with a low birth weight, that is enough to give them trouble in

their little bodies. I wouldn't worry about the cause as much as I would

the proper treatment. Worrying about the cause if the apraxia would be like

worrying about why my child had blue eyes instead of brown. I'll try to

find the book that helped me so much with my first apraxic student. (now in

the 6th grade, talks in complete sentences, if you make him, but has

learning problems--can read and do math,etc. and is a joy to be around!) He

had 40+ articulation errors when he was 4, started walking at age 3. Keep

this in mind...you have to get the motor skills going before the speech

really develops. the body has to be stabalized to support good speech.

Hope this helps!

Diane Beck, M.Ed.CCC/SLP

TX#13125

been in this business almost 18 years!

[ ] new to here and lots of questions!

>I am just overwhelmed with all the info I've seen since finding this

>group and the web site yesterday. I'm convinced my daughter has

>aproxia and would appreciate any insite from parents that have

>children with it whether they agree that this is her problem.

>

>She was born in Sept. 1998 and was born 4lbs 12 oz and 2 weeks

>early. No noticeable problems at first other than with nursing which

>I attributed to her being so small. At 7 mths I realized she still

>couldn't turn her head or roll over. At that point she started

>physical therapy even though my pediatrician said she didn't need

>it. Right before she turned a year old we moved out of town and she

>was reevaluated and told she needed PT and OT. Now with a supportive

>pedatrician. About 6 mths ago we again switched therapy providers

>and went with one that works with the child in the home. They

>dropped her out of OT and added Speech as she can only say

>Mamama,Dadada, and ba (for bath) but even that comes and goes. For

>the past 1.5 years she has had numerous tests included MRI's and has

>been to neurologists, endocrinologist, nutricionist, and geneticist.

>All trying to find out why she was so far delayed in developmental

>milestones and why she wasn't growing. Was diagnosed with failure to

>thrive but as far as the MRI's etc they all came back normal.

>Currently she has learned to walk (started walking right before her

>2nd b-day) is working on climbing steps, has her weight up to 19

>pounds, and has been discharged from OT. As far as Speech we haven't

>seen much difference even with therapy. We had tubes put in because

>we were told she couldn't hear due to fluid back in January 2001 but

>no big difference there either other than she is babbling more now.

>(she was a totally silent child before, still silent for the most

>part) Her ST thinks her speech problems have to due with the fluid

>and ear tubes but that doesn't explain all her other problems.

>Everyone has tried to come up with an explaination for each

>individual problem but seeing this aproxia site is the first one that

>I've found that explains all the problems with one thing. As opposed

>to them guessing about her hearing, guessing that maybe she was a

>preemie, guessing this and guessing that. You get my point I

>think.....and now since she seems to be progressing well (other than

>speech) they have just said oh well she'll be fine just keep on with

>the speech and eventually she will get that too. But still no

>explanations WHY she has had all these problems. Specific things

>I've seen (as referred to in the letter to parents about Tanner) that

>made me think that this may be the problem is her pickiness eating,

>chewing straws to drink, pushing all her food in her mouth, the fact

>it took a lot of effort to recently teach her how to stick her tongue

>out, she can't blow bubbles or blow out candles, she is sensitive to

>touch, and extremely clumsy though can walk now without falling

>over. She does understand EVERYTHING we tell her and can do detailed

>things such as work our VCR. We have also been told what a serious

>child she is.

>I told my mother in law, a RN, about the aproxia site but she said

>that was just for stroke victims and she didn't think that that is

>LeAnne's problem. But from everything I've read on the boards and in

>the site I am convinced I've finally found out what her problem is.

>Any suggestions? (ps her speech only sees her once a week for 45

>min) Should I try to get her diagnosed with aproxia? Are her symtoms

>similiar to the rest of you with children with aproxia? As you can

>tell this is all new to me and any info would be appreciated!

>Hannah, mom of LeAnne

[Guest guest]

That is an ongoing battle, and pediatricians will tell you that they have a

VERY hard time getting speech therapy approved. My son's pediatrician has

told me that a study needs to be done, showing when therapy was recommended

(age of child), what kind of therapy was instigated, and how well the child

has or hasn't progressed. This study could be definitive proof of early and

aggressive intervention for insurance companies to face up to.

We in Pennsylvania have a few alternative types of insurance (ours is called

" Gateway " ). The catch is that you must first apply for welfare (even if you

make more than $200,000.00 per year, and THEN be rejected. This insurance is

for children with disabilities.

Remember, pediatricians can not use the word " developmental " in the

diagnosis. The implication that it can be outgrown is too great. No 300.00

codes, ever!

A succesful one seems to be: ICD code 784.69, which means: Oral Motor Speech

Disorder of Neurogenic Origin.

Good luck!

Cowles Moir

[Guest guest]

hi diane, big question i'm sure you've rec'd before. everything i read

states that apraxia therapy needs to be one on one and also more frequent

than traditional means of speech therapy, but what do parents do if their

health insurance WON't cover speech therapy and the school system says that

don't have the means for each child to have therapy except maybe once/twice

a week for 30 minutes, there is no way to force their hands to give your

child more time if there case load is-according to them too great?? thanks..

Ann Clancy

Cherub of Southern Mississippi

> apraxia is not just for adults...your mother-in-law must be thinking about

> aphasia..That's as a result of a stroke. I am a SLP who has worked with

> several students labled with apraxia. A book that I used as a therapy

guide

> stated that children with apraxia need speech therapy at least 4 times a

> week, even if it is just 30 min. each session. Apraxia is defined as the

> inability to voluntarily control your muscles. That's why your daughter

had

> trouble developing her motor skills. Sometimes, when children are born

> early or with a low birth weight, that is enough to give them trouble in

> their little bodies. I wouldn't worry about the cause as much as I would

> the proper treatment. Worrying about the cause if the apraxia would be

like

> worrying about why my child had blue eyes instead of brown. I'll try to

> find the book that helped me so much with my first apraxic student. (now

in

> the 6th grade, talks in complete sentences, if you make him, but has

> learning problems--can read and do math,etc. and is a joy to be around!)

[Guest guest]

,

Hi, I was just wondering if you could tell me where

you found the explanations for the insurance codes? I

just went to a website to see what the codes were that

are being billed to my insurance, it just happens that

the code they are using is 315.4 and according to the

ICD-9 website, it says that 315.4 is a developmental

delay... and apraxia is 784.69 according to that

place. I would really appreciate any help, I am

trying to find out exactly what and why they are

billing it to my insurance that way when he has a dx

of apraxia. Thanks!

Kari Belle

[Guest guest]

Ann Clancy -

I wanted to address your question about what to do if the school system

doesn't have the ability to give an apraxic child the amount of sp. therapy

they need. What I would do in that situation is to get in writing from a

physician how imperitive it is that the child have sp. however many times a

week you're looking for, then I would go to an independent sp. therapist who

is knowledgeable with Apraxia and I would get it in writing from a sp.

therapist how these children will not succeed without intensive one on one

therapy ___x a week. I would also provide articles backing up your request

and then hold a meeting to present this info. I also was in this position

and what my town did was admit that they realized they did not have the

manpower to give my son ind. therapy so they offered to give it to him 2x a

week in school and then 2x a week through private therapy after school

hours. I don't live in your state, but in NJ, if the town cannot provide

what you can prove is medically necessary, they have to " outsource " the

services to someone else who can. It is not your problem that they do not

have enough sp. therapists employed. Hire another or pay to send your child

to someone privately. Please verify whether this is correct in your state

but I'm telling you how I handled it in my state and it did work. If this

is also the case in your state and they still insist they can't do it, don't

take no for an answer and go to mediation.

As far as private medical insurance, make sure your dr. is not using any

codes with the word developmental in them. My therapy was covered using the

insurance codes 315.4 - Apraxia of Speech and 781.3 which is Sensorimotor

Integration Dysfunction. My dr. wrote a letter stating that it was a

neurological problem, not a developmental one and that without this sp.

therapy, his pronosis for improvement was extremely poor.

I hope this info. helps -

in NJ

KDR-1@...

[Guest guest]

> ,

> Hi, I was just wondering if you could tell me where

> you found the explanations for the insurance codes? ...Thanks!

> Kari Belle

Hi Kari!

I'm sure some of the doctors can add more-but this is what I just

quickly " archived. " You can research insurance codes at

http://www.eicd.com/EICDMain.htm

Some of the information from the two of the past posts from Marilyn

Agin MD who is a developmental pediatrician, Medical Director for

Early Intervention, and Medical Director for CHERAB Foundation should

be helpful for advocating for appropriate therapy through insurance

and school.

What is significant and new that I found from Dr. Agin is:

" In April 2001, I took the first subspecialty boards exam in

Neurodevelopmental Disabilities given in 3 different locations in the

US. (I took it in Tampa). There were 200 multiple choice questions

of which ~10% were on speech and language disorders and 2 questions

(~1%) on oral/verbal apraxia! This exam was written by the American

Board of Psychiatry and Neurology and offered to pediatric

neurologists and developmental pediatricians, as well as those with

experience in the developmental disabilities. "

It means that the American Board of Psychiatry and Neurology is one of the first

medical organizations to " recognize " pediatric verbal apraxia. The

questionnaire just to take this exam was very intricate and long, so not all the

pediatric neurodevelopmental medical doctors that applied were qualified or

accepted to take this exam. Eventually what these few neurodevelopmental

doctors were tested on will make it's way to the rest. (which will change the

views of insurance-schools, etc.)

Post # 263

From: Dr. Marilyn Agin

Date: Sun Feb 4, 2001 10:36pm

Subject: INSURANCE: DEALING WITH THE BIG GUYS

Dear ,

One of the forces that most of our families with apraxic children

have had to deal at some time or another is the medical insurers. If

a medical professional or speech pathologist writes a report or a

bill for submission to the insurance company, here are some important

tenets to follow:

-Oral/verbal apraxia is a neurologic disorder so never use the word

developmental or a code that is " developmental " in the report or on

the bill.

-Useful ICD codes for Apraxia of Speech are #315.40 or #781.3. The

latter code is also one used for Hypotonia, Sensorimotor Integration

Disorder, and Coordination disorder, which may be associated with

apraxia of speech.

-If there is an associated expressive language disorder with the

apraxia, which is commonly the case, use #784.6 which is " other

symbolic dysfunction. "

If #315.3, 315.31, 315.39, or 315.9 are used, these are

developmental codes and may not be reimbursed.

Often the insurance co. will ask your doctor to write a Letter of

Medical Necessity of Letter of Predetermination. This needs to

state the appropriate diagnosis and code number, state that the

diagnosis(ses) have a neurologic basis and are not developmental, and

intensive treatment by qualified, experienced speech and occupational

therapists is required. Often you need to state the specialized

nature of the therapy (PROMPT, oromotor, sensory integration, etc.)

and explain why your therapist is more qualified than the one who

is " in network " for provider. Have your therapists state

their specialized credentials and certifications.

-Define apraxia as a speech disorder where the brain signals that go

to the muscles and structures of the speech mechanism are disrupted.

-Without therapy, children do not outgrow apraxia of speech. Speech

therapy is needed at least 4x week by experienced oral motor speech

therapists. Without this therapy, prognosis for improvement is poor.

-The provider may only provide therapy for 2 months or 6 months of

therapy. Accept it and reapply with new goals set by your speech

pathologist.

Don't be discouraged by a rejection. That's what they want, They

want to wear you down, but don't let them. This is your child and

you have to continue the fight and go to the top person in the

plan. If they tell you this is a preexisting condition, this is

absolutely absurd when talking about a child.

Be advised though, that some insurers are better than others. Some

will never offer speech services unless your child has had a stroke

or accident. (What a horrible thought). If you have a choice of

insurers, make sure you choose one wisely. Look at the benefits

before you sign up.

Good luck!

Marilyn Agin, M.D.

http://www.apraxia.cc

Post # 1269

From: " Marilyn Agin M.D. "

Date: Sat Apr 14, 2001 6:02pm

Subject: Increasing Awareness in the Medical Community

Hi everyone!

Reading about your respective experiences with ProEFA has

been quite exciting. I hope you are all keeping diaries and

videotaping your children so we can have " before " and " after "

data about the changes after EFA supplementation. We are

trying to orchestrate a study about the benefits of EFAs with the

help of experts from the Consortium for Brain Fatty Acids

including, Dr Katz, President of the Omega 3 Research

Institiute in Bethesda, MD. Right now we have your " case

studies " on your own children; what we would like to do is a

scientific study that would win the respect of the scientific and

medical community. For that we are working on raising funds

and will try to interest the biotech and pharmaceutical industries

to work with us. We will keep you informed about these

developments.

On April I took the first subspecialty boards exam in

Neurodevelopmental Disabilities given in 3 different locations in

the US. (I took it in Tampa). There were 200 multiple choice

questions of which ~10% were on speech and language

disorders and 2 questions (~1%) on oral/verbal apraxia! This

exam was was written by the American Board of Psychiatry and

Neurology and offered to pediatric neurologists and

developmental pediatricians, as well as those with experience in

the developmental disablilites.

As for questions about MRIs and CAT scans, there are children

with verbal apraxia and dyspraxic syndromes who have normal

scans. Physicians often hestitate to order these scans as they

are expensive, require sedation of the child, and often do not

change the course of action taken in terms of therapeutic

programming. I would like to see the use of SPECT scans

which documents blood flow in the brain used more, as one

small study in 1989 found reduced blood flow in the frontal area

of the brain involving Broca's area. That is the expressive

language area of the brain. SPECT scans are very expensive

and are usually found in academic institutions. I'm hoping we

can incorporate using this technology as part of a future study.

Dr. Marilyn Agin

Medical Director CHERAB Foundation

http://www.apraxia.cc

" It seems that this is a great chance to let everyone know how to

search the archives for information. First go to

You will need to

sign into , and if you don't have a account, it's free to

get one.

Once you are in the website you will see a blue box with the

words " Search Archives " All you need to do is put in key words

like " ProEFA " or " Insurance " etc. and it will bring up a list of

messages. That may not be the complete list, and you may have to

search under various names to find everything, but it's GREAT!! (ProEFA

is the healthcare professional line of omega 3 /6, EFA " essential fatty

acids " or fish oil. A great message to learn more about it is post # 1305

" Please tell me " If anyone has trouble finding past messages,

please email me at kiddietalk@... and I'll help!)

If you know the post number, you can add that to the box that says

Msg # ___ and then press " go "

[Guest guest]

Dear Ann

I happenened to be reading the message you sent to Diane regarding apraxia

therapy - well with regards to health insurance i cannot really help on that

issue since locally our service is offered of free by the government - you

see maltese patients are very luckly they hardly ever pay any sort of

hospital or medical fees unless they actually get private consultation

due to an immesly large case load ( remember everything for free) i do not

get to see most of the children more than once every three weeks. in fact

children with dyspraxia and hearing impairment are the ones i see more often

generally when i see kids with dyspraxia i get to see than once a week for

30 minutes - we have very intensive one-to -one therapy following a specific

dyspraxia program - i never felt the need to see these kids more often than

that first of all i feel that this form of intensive therapy could be

pretty frustrating both for the child and the SLP

however i must stress that I make it a point that the kids parents work with

them at least once a day of about 30 mins to 1 hour and i make it very clear

that unless they carry over at home its not going to work out. it would take

about 6-7 months to implement the program but the four times i've used it

results were noticed after 3 months -

in Feb 2000 i started this program on a child who was mis-diagnosed and

labelled learning disabiled rather than severly dyspraxic - today he is able

of using highly intelligible sentences with 4 information carry words - this

child is 4 years old

thus what i mean is that unless a 7 months - year of once a week therapy is

too long one could easily try to involve the parents more in the program

rather that having more sessions per week

i hope iwas of some help should you need further information please contact

me

regards

lise Cilia SLP

>From: " Ann Clancy " <bcause@...>

>Reply-

>< >

>Subject: Re: [ ] new to here and lots of questions!

>Date: Wed, 18 Apr 2001 13:35:43 -0500

>

>hi diane, big question i'm sure you've rec'd before. everything i read

>states that apraxia therapy needs to be one on one and also more frequent

>than traditional means of speech therapy, but what do parents do if their

>health insurance WON't cover speech therapy and the school system says that

>don't have the means for each child to have therapy except maybe once/twice

>a week for 30 minutes, there is no way to force their hands to give your

>child more time if there case load is-according to them too great??

>thanks..

>Ann Clancy

>Cherub of Southern Mississippi

[Guest guest]

lise-thank you for response, and i understand your explanation

completely, i was just under the impression that would be no where

sufficient for apraxic children even with the efforts of parents at home

that these kids need to be seen a minimum of 3 times weekly with 5x weekly

being the ultimate outcome...thanks..ann

[Guest guest]

Hi ,

Thank you so much for that info... it was the EICD

website that I had checked those codes on. Maybe I

misread them, but I am sure I read that the code 315.4

is a developmental code... I will go back and check

again! Once again, Thanks!

P.S.

Can the Southern California Apraxia Association still

get a copy of the last meeting out there? We are

waiting to schedule our first meeting! Thank you so

much for all the help you have been to us and all the

great advice on getting our group started!!

Kari Belle

Founder: Southern California Apraxia Association

see us at: http://www.SouthernCaliApraxia.homestead.com

__________________________________________________