Re: did you have early diagnosis for child?

[Guest guest]

Iveta,

You'll get a diagnosis and that may change as your child develops, so I'm not

sure that " it " is that important unless they tell you to wait. Do no wait! At 2,

my son did not have a diagnosis besides very extremely delayed. That was

sufficient to start him on Early Intervention which I'm not so sure helped him.

But it did qualify him for the Disabled Preschool program in school that helped

him tremendously. At 3yrs old, he received a diagnosis of Severe Oral/Verbal

Apraxia, Hypotonia & Sensory Integration Disorder. At 6 yrs old, changed to

Dyspraxia and I have a followup appt. next month. The more you research the more

you can almost diagnose your child. I think you are almost your son's best " dr " .

and you should try different things to see if they work. I've tried numerous

things which I feel all in combination have worked. He is communicating nicely

though not yet @ his age level. I can go on and on but I did want to tell you

to not get too caught up on a diagnosis. It does help w/ insurance & school

qualifications so I'll take any diagnosis that'll get you services!

From:

[mailto: ] On Behalf Of lucy4gets

Sent: Wednesday, April 08, 2009 1:25 PM

Subject: [ ] did you have early diagnosis for child?

so we have been busy with appointment after appointment at our Childrens's

Hospital.

My 20month old has seen the PT for an evaluation- 2nd one. Yeah! he starts PT

this week with the hospital!!

We had a developmental ped evaluation and a speech evaluation also.

NONE of these evaluations got me closer in knowing he might/or has!! All I've

been told is that he is not ASD. Well...is it going to be detailed in their

reports when I receive them all?

When will I know WHAT my son has?? I feel like my hands are tied as to how to

help him if I don't know exactly what is wrong......

Did you all get a clear diagnosis from these evaluations/doctors?

I also have read in The Late Talker book that is is important what codes they

use. I haven't seen any codes yet- but some are really not able to get

treatments for the children?

Any experiences appriciated- thanks!

Iveta

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[Guest guest]

Iveta, I know that no one usually gives a confirmed " apraxi diagnosis until age

5 years. Some have been have to get a " suspected apraxia " diagnosis around age 3

years or so. You may get a " developmental speech delay " diagnosis if you child

is not up to par with speech sounds and words.

Wht sort of trouble are you having?

-- In , " lucy4gets " <lucy2max@...>

wrote:

>

> so we have been busy with appointment after appointment at our Childrens's

Hospital.

>

> My 20month old has seen the PT for an evaluation- 2nd one. Yeah! he starts PT

this week with the hospital!!

>

> We had a developmental ped evaluation and a speech evaluation also.

>

> NONE of these evaluations got me closer in knowing he might/or has!! All I've

been told is that he is not ASD. Well...is it going to be detailed in their

reports when I receive them all?

>

> When will I know WHAT my son has?? I feel like my hands are tied as to how to

help him if I don't know exactly what is wrong......

>

> Did you all get a clear diagnosis from these evaluations/doctors?

>

> I also have read in The Late Talker book that is is important what codes they

use. I haven't seen any codes yet- but some are really not able to get

treatments for the children?

>

> Any experiences appriciated- thanks!

> Iveta

>

[Guest guest]

Trying to make you feel better here :0)) or laugh one, but does he say " DADA "

and " DUMDUM " in the same sentence? LOL... sorry, I had to laugh and spread some

of my delirium onto you. I have had a very trying day and I know exactly where

you are coming from. Perhaps, I can help with how to get the services when you

have no income. (I am in that boat, too.)

I am also in the same boat with delays, delays, delays. They make you feel that

you are getting all these services so perhaps you won't complain about the

needed services that your child is not getting. Problem is that they have lots

of people trained in giving the unneeded services and very few trained in giving

the needed services.

Unfortunately, my son cannot get even an in-home evaluation and he is on

homebound services. We even have an attorney~the best in the state~so they all

say. Here we are at te end of the school year and my son has multiple

disabilities (MDS, Apraxia, HOH, Sensory issues) and we cannot get one stinking

service. We had services until he became homebound and now we cannot get even

one.

Now, I am ranting. Like I said I have had a trying day, but I can try to help

with the fight you are attempting to go through. How can I help?

> >

> > so we have been busy with appointment after appointment at our Childrens's

Hospital.

> >

> > My 20month old has seen the PT for an evaluation- 2nd one. Yeah! he starts

PT this week with the hospital!!

> >

> > We had a developmental ped evaluation and a speech evaluation also.

> >

> > NONE of these evaluations got me closer in knowing he might/or has!! All

I've been told is that he is not ASD. Well...is it going to be detailed in their

reports when I receive them all?

> >

> > When will I know WHAT my son has?? I feel like my hands are tied as to how

to help him if I don't know exactly what is wrong......

> >

> > Did you all get a clear diagnosis from these evaluations/doctors?

> >

> > I also have read in The Late Talker book that is is important what codes

they use. I haven't seen any codes yet- but some are really not able to get

treatments for the children?

> >

> > Any experiences appriciated- thanks!

> > Iveta

> >

>

>

>

>

>

>

[Guest guest]

Most can get a definitive diagnosis of verbal apraxia by 3. ( who told you

5? When children are not diagnosed until 5 -I typically say fire the SLP!)

Prior to 3 however most get the diagnosis of " suspected apraxia " where you begin

appropriate therapy for apraxia just in case. At 20 months old there are many

that can diagnose oral apraxia and if one has oral apraxia then it's almost sure

your child will have verbal apraxia as well. For younger children you want to

look for " soft signs " and signs of oral apraxia

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

http://www.cherab.org/information/speechlanguage/oralapraxia.html

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

If apraxia is suspected- an evaluation by a pediatric neurologist or

developmental pediatrician is advised to confirm or rule out any of the above

" soft signs "

Also the best codes to use to get coverage for apraxia are all in The Late

Talker book. (and my one co author is a neurodevelopmental pediatrician so know

which has worked best)

Hope the above information helps!

=====

[Guest guest]

Yes, 5 did sound a little late for when it's " officially " diagnosed.

My son was diagnosed at 3.11 with apraxia. I feel it should have been

before then. He was functionally non-verbal at age 4. He had almost

no words and the ones he had he couldn't say in a consistent manner.

He had tons of " red flags " for apraxia, but those were misinterpreted

to be autism by a team that IMO was searching for autism.

He got plenty of early diagnoses including " moderate autism " , sensory

integration disorder and cognitive delays. If he is anywhere on the

spectrum it's very very very mild (and depending on which professional

you ask he may be - those who know him best including us as parents

say NO WAY.) The SDI diagnosis was removed at age 3.11. He has a few

sensory quirks, but nothing that interferes with daily life. At age 6

two different IQ tests showed without a doubt that he is very much the

opposite of cognitively impaired which I told them at age 2.5!

Minimal expressive and even receptive speech does not mean low IQ! In

my son's case it's speech and language disorders.

Once we dropped the autism therapies and started treating him as

apraxic he started talking!

We still don't have a diagnosis for his language disorder, but he is

making slow and steady progress in therapy. For me that is the key.

If you suspect apraxia in a young one treat them as if it is apraxia

and watch for results.

My daughter had a lot of red flags as well. At 16 months I had her

tested by my son's SLP. She was almost a year delayed. She hardly

babbled and her only sounds were vowels. No mama or baba or dada

until well after 18 months. She started EI and thankfully where we

moved and having an apraxic brother they took my concerns seriously.

They dug around and found a SLP with experience with motor planning

issues. Then when a Prompt trained consultant became available they

added her to our team! It is now clear that she has just a

phonological disorder, not apraxia and thankfully no language disorder

on top of that like her brother. Her language is very advanced both

expressively and receptively. We just can't understand the majority

of the expressive! She has some motor planning issues (possibly mild

oral apraxia) but her speech errors are very consistent. It's night

and day from my apraxic son. We can learn that " or " means horse

because she ALWAYS says it the same way. It does wonders for

frustration to at least have mom understand you a good part of the

time even if strangers can't catch a word. She's still quite delayed

and we think she'll qualify for pre-K (her eval is in May.)

The most important thing is that speech therapy geared toward apraxia

did not hurt her one bit. My advice to anyone who is unsure if it's

apraxia is to start working with the child as if it is!

Miche

On Thu, Apr 9, 2009 at 11:26 PM, kiddietalk <kiddietalk@...> wrote:

>

>

> Most can get a definitive diagnosis of verbal apraxia by 3. ( who told

> you 5? When children are not diagnosed until 5 -I typically say fire the

> SLP!) Prior to 3 however most get the diagnosis of " suspected apraxia " where

> you begin appropriate therapy for apraxia just in case. At 20 months old

> there are many that can diagnose oral apraxia and if one has oral apraxia

> then it's almost sure your child will have verbal apraxia as well. For

> younger children you want to look for " soft signs " and signs of oral apraxia

[Guest guest]

, Welcome to my world in Georgia!

I could have told them at age 2 that it was apraxia or better yet anything but

developmental delay. HMMM...as a matter of fact, I DID! They did not listen and

unfortunately, there was incorrect info (Trisomy 21 misdiagnosis) in his medical

records and no one looked past that. They decided MR (which was way wrong) and

the fact that I no monetary means of fighting a failing system from EI to now, I

am at the hands of incompetence right now. Sorry to be so mean,but just calling

it as I see it.

When he said a sentence around 18 months tht as intelligible and then he began

not sayig anything, then I heard him say hs name, then nothing again, then it

just literally begin t sound like a stroke patient. They tried to lay it off on

hearing, which was wrong also. (We have fluctuating fluid , noninfectious, due

to seasonal allergies and other allergies.) But now, there are clear ears, no

fluid, as h grew also and the eustachian tubes changed, what they now think is a

mystery. " I " know the problem...it is called area 41 in the brain (next to

damaged area 44). It is getting better, but slowly, and we work on paying

attention. He fell asleep during one audiogram. He hears okay, asfar as everyone

can tell. It is just all in the apraxia. It is a shame that people cannot find a

good lawyer advocate when they need one.

Maybe by the time he is 12, he will get some justice and get services he needs?

--. In , " kiddietalk " <kiddietalk@...>

wrote:

>

> Most can get a definitive diagnosis of verbal apraxia by 3. ( who told

you 5? When children are not diagnosed until 5 -I typically say fire the SLP!)

Prior to 3 however most get the diagnosis of " suspected apraxia " where you begin

appropriate therapy for apraxia just in case. At 20 months old there are many

that can diagnose oral apraxia and if one has oral apraxia then it's almost sure

your child will have verbal apraxia as well. For younger children you want to

look for " soft signs " and signs of oral apraxia

>

> http://www.cherab.org/information/speechlanguage/verbalapraxia.html

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

> http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

> If apraxia is suspected- an evaluation by a pediatric neurologist or

developmental pediatrician is advised to confirm or rule out any of the above

" soft signs "

>

> Also the best codes to use to get coverage for apraxia are all in The Late

Talker book. (and my one co author is a neurodevelopmental pediatrician so know

which has worked best)

>

> Hope the above information helps!

>

> =====

>

[Guest guest]

, I think it is all a matter of finding the right therapist and

unfortunately, the " country " areas just do not have them. My son really has not

had the therapy services he has needed since birth. Although deemed eligible and

in EI programs, no one came to the home.

His insurance changes (state funded) ceased some good therapy he was getting at

one short time...but I must say that she stilldid not give an apraxia diagnosis

bcase she could not look beyond the genetic label.

It just stinks. That is why I am raving mad that the attorney is like a snail.

> >

> >

> > Most can get a definitive diagnosis of verbal apraxia by 3. ( who told

> > you 5? When children are not diagnosed until 5 -I typically say fire the

> > SLP!) Prior to 3 however most get the diagnosis of " suspected apraxia " where

> > you begin appropriate therapy for apraxia just in case. At 20 months old

> > there are many that can diagnose oral apraxia and if one has oral apraxia

> > then it's almost sure your child will have verbal apraxia as well. For

> > younger children you want to look for " soft signs " and signs of oral apraxia

>

[Guest guest]

For the record I was in a city, in fact a state capital although a

small one, but there were resources and he got 5 hours of therapy a

week in EI. Just the wrong kind.

Miche

On Fri, Apr 10, 2009 at 8:18 AM, <agirlnamedsuess@...> wrote:

>

>

> , I think it is all a matter of finding the right therapist and

> unfortunately, the " country " areas just do not have them. My son really has

> not had the therapy services he has needed since birth. Although deemed

> eligible and in EI programs, no one came to the home.

> His insurance changes (state funded) ceased some good therapy he was getting

> at one short time...but I must say that she stilldid not give an apraxia

> diagnosis bcase she could not look beyond the genetic label.

> It just stinks. That is why I am raving mad that the attorney is like a

> snail.

[Guest guest]

I know plenty about getting " wrong kind " of services. Too bad it was not 5 hours

per week of the right kind.

> >

> >

> > , I think it is all a matter of finding the right therapist and

> > unfortunately, the " country " areas just do not have them. My son really has

> > not had the therapy services he has needed since birth. Although deemed

> > eligible and in EI programs, no one came to the home.

> > His insurance changes (state funded) ceased some good therapy he was getting

> > at one short time...but I must say that she stilldid not give an apraxia

> > diagnosis bcase she could not look beyond the genetic label.

> > It just stinks. That is why I am raving mad that the attorney is like a

> > snail.

>

[Guest guest]

you are so sweet. that was funny..but no, he doesn't say it in the same

sentence! I do have another IFSP meeting in a week and a half- so MAYBE

something will happen. but what I am learning is that if they don't have it (the

therapists) they won't give it to you. I HATE that the law says you are to get

it and then have them pay you back..yeah right..what the law says and what is

attainable is so different. why write the laws even- when it doesn't happen.

I am wondering with a lawyer you have- you still cannot get services. Homebound

would mean MORE services- I would think!

We live in very busy burbs- close to everything..so it is pathetic they don't

have enough people.

Once again- how do you know if you FINALLY get someone to your house that they

will be the RIGHT therapist with the correct methods? I don't know yet what

methods to look for and what they look like- so right or wrong when it comes- I

will NOT know! where does one learn all this??? you would think the " experts " at

the hospitals and such could at least advise on that!!!

so I don't know WHAT to ask for yet as far as help from you, you have already

helped in being kind to vent with me....after my IFSP meeting on the 21st- we

can talk some more. If they do not get me an OT and ST- then I file for

mediation. I don't care...they should do their job.

Iveta

>

> Trying to make you feel better here :0)) or laugh one, but does he say " DADA "

and " DUMDUM " in the same sentence? LOL... sorry, I had to laugh and spread some

of my delirium onto you. I have had a very trying day and I know exactly where

you are coming from. Perhaps, I can help with how to get the services when you

have no income. (I am in that boat, too.)

> I am also in the same boat with delays, delays, delays. They make you feel

that you are getting all these services so perhaps you won't complain about the

needed services that your child is not getting. Problem is that they have lots

of people trained in giving the unneeded services and very few trained in giving

the needed services.

> Unfortunately, my son cannot get even an in-home evaluation and he is on

homebound services. We even have an attorney~the best in the state~so they all

say. Here we are at te end of the school year and my son has multiple

disabilities (MDS, Apraxia, HOH, Sensory issues) and we cannot get one stinking

service. We had services until he became homebound and now we cannot get even

one.

> Now, I am ranting. Like I said I have had a trying day, but I can try to help

with the fight you are attempting to go through. How can I help?

>

[Guest guest]

- so is it to our best interest to pay for a 45min. session (they are

expensive)by a private SLP- who is very familiar with apraxia and does Prompt,

Beckman..to look at him and at least give us a " feel " of what is up with him and

maybe give us a few ideas/exercises to do with him?

>

> Most can get a definitive diagnosis of verbal apraxia by 3. ( who told

you 5? When children are not diagnosed until 5 -I typically say fire the SLP!)

Prior to 3 however most get the diagnosis of " suspected apraxia " where you begin

appropriate therapy for apraxia just in case. At 20 months old there are many

that can diagnose oral apraxia and if one has oral apraxia then it's almost sure

your child will have verbal apraxia as well. For younger children you want to

look for " soft signs " and signs of oral apraxia

>

> http://www.cherab.org/information/speechlanguage/verbalapraxia.html

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

> http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

> If apraxia is suspected- an evaluation by a pediatric neurologist or

developmental pediatrician is advised to confirm or rule out any of the above

" soft signs "

>

> Also the best codes to use to get coverage for apraxia are all in The Late

Talker book. (and my one co author is a neurodevelopmental pediatrician so know

which has worked best)

>

> Hope the above information helps!

>

> =====

>

[Guest guest]

I would say yes. It's definitely worth it to get an eval by someone

well versed with motor planning and who uses methods such as Prompt or

Kaufmann. Even if it's something that isn't affordable right now a

good therapist can steer you in the right direction and often having

that kind of eval can push the EI folks. Homework is no substitute

for a great SLP, but it can make a huge difference!

Also keep being firm with the EI team. I doubt my daughter would have

received the therapies she had if I wasn't pushing so hard. I

actually educated some folks in EI about appropriate therapies for

suspected apraxia. I didn't go all out requesting the moon either,

but I stood firm and started making a stink after we were processed

and we got the " no therapists available " line. In their case I think

it was legit and they WERE trying and we came close to having some

sessions with an early intervention specialist who was not an SLP just

to get us known better, but then an SLP miraculously showed up! LOL

In all honestly I think they worked harder because they knew they were

dealing with a mom who was well seasoned and willing to stand up for

her child's rights. I was always polite, but very firm and tried to

stay unemotional. I let my emotions out in complaints and vents to

groups like this!

Miche

On Fri, Apr 10, 2009 at 12:18 PM, lucy4gets <lucy2max@...> wrote:

>

>

> - so is it to our best interest to pay for a 45min. session (they are

> expensive)by a private SLP- who is very familiar with apraxia and does

> Prompt, Beckman..to look at him and at least give us a " feel " of what is up

> with him and maybe give us a few ideas/exercises to do with him?

[Guest guest]

> Once again- how do you know if you FINALLY get someone to your house that

> they will be the RIGHT therapist with the correct methods? I don't know yet

> what methods to look for and what they look like- so right or wrong when it

> comes- I will NOT know! where does one learn all this??? you would think the

> " experts " at the hospitals and such could at least advise on that!!!

If it's the right therapy you'll see progress. It's that simple.

Give a few weeks for the therapist to get to know your child and then

you should be seeing results. If not words than more verbal attempts,

decrease in frustration, SOMETHING!