new member with a question

[Guest guest]

Hi everyone. I have a 3 year old daughter who I think might have

apraxia.. but I live in a very rural area and the SLP that we are

seeing doesn't really have experience with apraxia so she isn't

comfortable DX it as of yet and the neurologist that we just saw said

that it could only be apraxia if she had speech and then lost it.

Here is the info about my daughter and I would appreciate any info

that anyone thinks might help me.

-She never babbled at all as an infant..began to babble a little bit

around 1 1/2 years old and mostly even now calls everything ba ba ba

over and over..she does point to things and will lead you to what she

wants

-Hearing tested fine

-The only words she says are mama and baby (sounds like bebe like she

is speaking Spanish..which she isn't)

-I have heard her say clearly each of the following words once..fire,

fish, bubble and red..but only one time for each word and never said

it again

-She will not repeat the two words that she does know when asked to

repeat or imitate them but she will repeat some sounds like ba and

the letter sounds for k and g and m

-she won't repeat any vowel sounds but she does use the long e and

the short o and u and a when she is babbling

-since she has began working with the SLP (about 8 months ago) she is

showing improvement..mainly in that she is babbling more and trying

to talk and is repeating the consonant sounds and is signing

-when asked to repeat something she moves her mouth like she is

trying to comply but can't quite get it

-she doesn't pucker her mouth to kiss but she can suck and blow

through a straw but won't blow without a straw in her mouth

-she can stick her tongue out sometimes but won't usually do this

-she can blow raspberries make other noises using her tongue like

clucking (not sure how to describe it..sorry)

-her receptive skills seem slighly delayed but overall seem ok..we

have been signing with her and she has picked that up pretty quickly

and will sign for things she wants

-she also has low muscle tone and is in OT and PT

_she has chewing and swallowing difficulties although these are

showing some significant improvement

-she still puts everything in her mouth all the time like an infant

would and eats innapropriate things like soap and paper and such

so..based on this information ...do you think it sounds like verbal

apraxia? And do any of you know how I could go about finding a SLP

in my area who specialized in apraxia so i could try to get a dx if

that is what it is?

thank you all for any help you can shed in this..it is so frustrating

[Guest guest]

wondering what part of the us you live in, and if there is a city nearby you can

get her dx'd in..........

 

lisa

From: music_maker_68 <salas321@...>

Subject: [ ] new member with a question

Date: Thursday, November 20, 2008, 10:06 PM

Hi everyone. I have a 3 year old daughter who I think might have

apraxia.. but I live in a very rural area and the SLP that we are

seeing doesn't really have experience with apraxia so she isn't

comfortable DX it as of yet and the neurologist that we just saw said

that it could only be apraxia if she had speech and then lost it.

Here is the info about my daughter and I would appreciate any info

that anyone thinks might help me.

-She never babbled at all as an infant..began to babble a little bit

around 1 1/2 years old and mostly even now calls everything ba ba ba

over and over..she does point to things and will lead you to what she

wants

-Hearing tested fine

-The only words she says are mama and baby (sounds like bebe like she

is speaking Spanish..which she isn't)

-I have heard her say clearly each of the following words once..fire,

fish, bubble and red..but only one time for each word and never said

it again

-She will not repeat the two words that she does know when asked to

repeat or imitate them but she will repeat some sounds like ba and

the letter sounds for k and g and m

-she won't repeat any vowel sounds but she does use the long e and

the short o and u and a when she is babbling

-since she has began working with the SLP (about 8 months ago) she is

showing improvement. .mainly in that she is babbling more and trying

to talk and is repeating the consonant sounds and is signing

-when asked to repeat something she moves her mouth like she is

trying to comply but can't quite get it

-she doesn't pucker her mouth to kiss but she can suck and blow

through a straw but won't blow without a straw in her mouth

-she can stick her tongue out sometimes but won't usually do this

-she can blow raspberries make other noises using her tongue like

clucking (not sure how to describe it..sorry)

-her receptive skills seem slighly delayed but overall seem ok..we

have been signing with her and she has picked that up pretty quickly

and will sign for things she wants

-she also has low muscle tone and is in OT and PT

_she has chewing and swallowing difficulties although these are

showing some significant improvement

-she still puts everything in her mouth all the time like an infant

would and eats innapropriate things like soap and paper and such

so..based on this information ...do you think it sounds like verbal

apraxia? And do any of you know how I could go about finding a SLP

in my area who specialized in apraxia so i could try to get a dx if

that is what it is?

thank you all for any help you can shed in this..it is so frustrating

[Guest guest]

,

Where are you from? I live ina rural area too and I know how hard it is to get

the kind of help and answers you need. On thing you mentioned was the neuro.

saying she wasn't apraxic unless she spoke first and lost her words..Well I

don't know what school he/she went to but let me tell you, some apraxic kids

might say words and lose them but not all! My daughter is 9 this month and was

diagnosed at age three (Houston) and she never had words to lose. She spoke " guy

guy guy " for everything. I hear that alot on this board. Not " guy " but repeating

sounds to talk. Like your daughter's " ba ba ba " , and 's son said " mmm mmm

mmm " So I think your right in thinking she's apraxic. Just my opinion, but I am

sure others will agree with me. Have you heard of using fish oils, and if so are

you using them? Please write back and tell us where in the country you are!

Joy, mom to Shyann, 9

 

[Guest guest]

I'm not much help but I wanted to post that my son's SLP said she

felt he had Apraxia and Dysarthria. I then went to a neurologist who

diagnosed him with Apraxia and Dysarthria and Hypotonia (in his

tongue, arms, and legs). My son never had speech with consonants

other than " mama " , " nana " , and after 6 initial mos of ST he could

say " no " . When he was 2 1/2 I realized he only spoke in vowel sounds

like " ah ah oh oh ee " for " mama cocoa please " .

I would get a second or third opinion. It's rare two doctors have

the same opinion in my experience for my particular child.

Best wishes,

Debra, homeschooling mom of 4

>

> Hi everyone. I have a 3 year old daughter who I think might have

> apraxia.. but I live in a very rural area and the SLP that we are

> seeing doesn't really have experience with apraxia so she isn't

> comfortable DX it as of yet and the neurologist that we just saw

said

> that it could only be apraxia if she had speech and then lost it.

> Here is the info about my daughter and I would appreciate any info

> that anyone thinks might help me.

> -She never babbled at all as an infant..began to babble a little

bit

> around 1 1/2 years old and mostly even now calls everything ba ba

ba

> over and over..she does point to things and will lead you to what

she

> wants

> -Hearing tested fine

> -The only words she says are mama and baby (sounds like bebe like

she

> is speaking Spanish..which she isn't)

> -I have heard her say clearly each of the following words

once..fire,

> fish, bubble and red..but only one time for each word and never

said

> it again

> -She will not repeat the two words that she does know when asked to

> repeat or imitate them but she will repeat some sounds like ba and

> the letter sounds for k and g and m

> -she won't repeat any vowel sounds but she does use the long e and

> the short o and u and a when she is babbling

> -since she has began working with the SLP (about 8 months ago) she

is

> showing improvement..mainly in that she is babbling more and trying

> to talk and is repeating the consonant sounds and is signing

> -when asked to repeat something she moves her mouth like she is

> trying to comply but can't quite get it

> -she doesn't pucker her mouth to kiss but she can suck and blow

> through a straw but won't blow without a straw in her mouth

> -she can stick her tongue out sometimes but won't usually do this

> -she can blow raspberries make other noises using her tongue like

> clucking (not sure how to describe it..sorry)

> -her receptive skills seem slighly delayed but overall seem ok..we

> have been signing with her and she has picked that up pretty

quickly

> and will sign for things she wants

> -she also has low muscle tone and is in OT and PT

> _she has chewing and swallowing difficulties although these are

> showing some significant improvement

> -she still puts everything in her mouth all the time like an infant

> would and eats innapropriate things like soap and paper and such

>

> so..based on this information ...do you think it sounds like verbal

> apraxia? And do any of you know how I could go about finding a SLP

> in my area who specialized in apraxia so i could try to get a dx if

> that is what it is?

> thank you all for any help you can shed in this..it is so

frustrating

>

>

[Guest guest]

Gah I hate reading posts like this because your neuro is right... She

doesn't have " apraxia " . She probably has " childhood apraxia of

speech " (CAS). But for all of the years of college that doc had to

attend to get a degree, you'd think he/she'd be aware of the

condition. Okay, so we can't all be Doctor House and remember all the

obscure illnesses we've heard of once, but darn it, CAS is a well

known condition!

From my non-prof. point of view, all of her symptoms sound like

apraxia (CAS). My son had very similar ones. Since I'm sure you have

to wait a while between neuro visits, contact them and ask them to

research CAS in time for your next appt. Otherwise, visit a few

trusted sites and bring them all the info you can find on it.

American speech and hearing association> www.asha.org, Childhood

apraxia of speech association of North America (CASANA)> www.apraxia-

kids.org. I'm sure there are others, but those are the ones that come

to mind for me.

Also, look into a Neurodevelopmental pediatrician. They will be much

better equipped to deal with the situation than a regular

neurologist. Good luck!!

>

> Hi everyone. I have a 3 year old daughter who I think might have

> apraxia.. but I live in a very rural area and the SLP that we are

> seeing doesn't really have experience with apraxia so she isn't

> comfortable DX it as of yet and the neurologist that we just saw

said

> that it could only be apraxia if she had speech and then lost it.

> Here is the info about my daughter and I would appreciate any info

> that anyone thinks might help me.

> -She never babbled at all as an infant..began to babble a little

bit

> around 1 1/2 years old and mostly even now calls everything ba ba

ba

> over and over..she does point to things and will lead you to what

she

> wants

> -Hearing tested fine

> -The only words she says are mama and baby (sounds like bebe like

she

> is speaking Spanish..which she isn't)

> -I have heard her say clearly each of the following words

once..fire,

> fish, bubble and red..but only one time for each word and never

said

> it again

> -She will not repeat the two words that she does know when asked to

> repeat or imitate them but she will repeat some sounds like ba and

> the letter sounds for k and g and m

> -she won't repeat any vowel sounds but she does use the long e and

> the short o and u and a when she is babbling

> -since she has began working with the SLP (about 8 months ago) she

is

> showing improvement..mainly in that she is babbling more and trying

> to talk and is repeating the consonant sounds and is signing

> -when asked to repeat something she moves her mouth like she is

> trying to comply but can't quite get it

> -she doesn't pucker her mouth to kiss but she can suck and blow

> through a straw but won't blow without a straw in her mouth

> -she can stick her tongue out sometimes but won't usually do this

> -she can blow raspberries make other noises using her tongue like

> clucking (not sure how to describe it..sorry)

> -her receptive skills seem slighly delayed but overall seem ok..we

> have been signing with her and she has picked that up pretty

quickly

> and will sign for things she wants

> -she also has low muscle tone and is in OT and PT

> _she has chewing and swallowing difficulties although these are

> showing some significant improvement

> -she still puts everything in her mouth all the time like an infant

> would and eats innapropriate things like soap and paper and such

>

> so..based on this information ...do you think it sounds like verbal

> apraxia? And do any of you know how I could go about finding a SLP

> in my area who specialized in apraxia so i could try to get a dx if

> that is what it is?

> thank you all for any help you can shed in this..it is so

frustrating

>

>

[Guest guest]

I'm going to go through each point you brought up:

" -She never babbled at all as an infant..began to babble a little bit

around 1 1/2 years old and mostly even now calls everything ba ba ba

over and over..she does point to things and will lead you to what she

wants "

The lack of babble is a sign of concern. The pointing and attempts

to communicate tell me there's the possibility that her receptive

ability was above her expressive which also points to a disorder vs a

delay. But those signs in themselves wouldn't mean apraxia.

" -Hearing tested fine "

Great!

'-The only words she says are mama and baby (sounds like bebe like she

is speaking Spanish..which she isn't) "

No progression of building on words she already knows- using the same

word for different meanings is a red flag.

" -I have heard her say clearly each of the following words once..fire,

fish, bubble and red..but only one time for each word and never said

it again:

To say a word or do an action once and not being able to say or do it

again is a classic sign of apraxia.

" -She will not repeat the two words that she does know when asked to

repeat or imitate them but she will repeat some sounds like ba and

the letter sounds for k and g and m "

Not being able to perform on command is another classic sign of

apraxia. It has nothing to do with not wanting to do it -it has to

do with not being able to. The " b " sound I suspect is in her " motor

memory and besides like the sound of the letter " m " it's a frontal

sound which comes easier to most apraxic children. If she does have

apraxia you are fortionate that she already has the " K " and " G " sound

down as many of our kids have trouble with those sounds.

" -she won't repeat any vowel sounds but she does use the long e and

the short o and u and a when she is babbling "

Again it may not be that she " won't " but that she can't repeat the

vowel sounds. Apraxia is a strange condition where you can say a

vowel after a certain consonant but not after another. Where you can

say a sound when it's after or before another sound but not in

isolation. If it doesn't make sense -that's apraxia.

" -since she has began working with the SLP (about 8 months ago) she is

showing improvement..mainly in that she is babbling more and trying

to talk and is repeating the consonant sounds and is signing "

Excellent -she should be in a preschool special needs placement as

well. Is she? If she has an IEP what are her goals? Did you share

the book The Late Talker with your child's neurologist. Perhaps

since you are out in the boonies you can bring the boonies up to

speed? It's important to work hand in hand with a neurodevelopmental

medical doctor as many children with apraxia also have " soft signs "

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

" -when asked to repeat something she moves her mouth like she is

trying to comply but can't quite get it "

Groping -don't remind me but that's one of the first signs of

apraxia -typically found in preschool children.

" -she doesn't pucker her mouth to kiss but she can suck and blow

through a straw but won't blow without a straw in her mouth

-she can stick her tongue out sometimes but won't usually do this

-she can blow raspberries make other noises using her tongue like

clucking (not sure how to describe it..sorry)

_she has chewing and swallowing difficulties although these are

showing some significant improvement

-she still puts everything in her mouth all the time like an infant

would and eats innapropriate things like soap and paper and such "

All of these can be signs of oral motor issues which can be due to

motor planning, weakness. Probably she should be evaluated by an

oral motor SLP for oral apraxia as well as verbal.

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

I can comment on more but have to run out so just going through these

quick but in a nutshell there are developmental stages your daughter

probably missed that she's going through now. As they say better

late than never.

" -her receptive skills seem slighly delayed but overall seem ok..we

have been signing with her and she has picked that up pretty quickly

and will sign for things she wants "

Oooh you don't want to go there with your 3 year old who may have

apraxia. Please give her the benefit of the doubt that she has lots

on her plate she's dealing with and there are many things she wants

to do but just can't yet and needs to be taught how. Self esteem is

so precious and if you give up on her who else will believe in her?

" -she also has low muscle tone and is in OT and PT "

Hypotonia -see soft signs of apraxia above.

Based on what you wrote yes it sounds like she has apraxia.

Here's a cut and paste from one new member archive with a bit more

info -hope this helps to start!

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

or

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/co

ntpeds/492004/136315/article.pdf

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

PS your email name is music maker -have you thought about music

therapy?

=====

[Guest guest]

Hi ,

Looks like you have received a lot of replies already. I haven't

gone through them, so sorry if this is repeat information!

We live in a rural area also. I called the 2 closest Children's

Hospitals and asked to be connected to the Speech Dept. I

specifically asked if they were familiar with apraxia and luckily

many of them were and I was able to go to Akron Children's where all

of her other specialists are located.

We had our 2yo DD evaluated this past Tuesday and finally received a

provisional diagnosis of verbal apraxia. The SLP is going to

reccomend one-on-one therapy with a re-eval in 6 months.

Our DD is in Early Intervention, but as we are learning, that is a

" blanket " program. Don't get me wrong...it has REALLY helped with

her sensory issues, but obviously not her speech. I work at the

local hospital and have talked to the SLP here and also the SLP at

early intervention and neither were really familiar with apraxia, so

we went to the people who are!

Hope this helps!

in OH

[Guest guest]

,

You're absolutely right. Although they're both apraxia, I was taking

it from the angle that the neuro is wrong- adult onset apraxia (which

is what he or she was obviously referring to) is not the only type

out there. I was trying to say that the neuro should research CAS as

a type of apraxia so that he/she understands that it's not something

that stops people from speaking instead of never talking in the first

place. Perhaps I should've added " make sure it's written as 'just'

apraxia on the dx for sake of the stupid freakin' insurance companies

that love to take our money but hate to give it back " ... Don't get me

started on insurance companies this week. I'm fighting mine since

they don't want to pay for therapy since it's out of network even

though they're still telling me the therapist is in network. ~sigh~

I'd never wish bad on anyone, but some days I just wish the people on

the other end of the phone had a true understanding of what we go

through...

Back to House, when Nicky got EI, I remember the eval team ladies

discussing apraxia vs. dyspraxia (months before he was dx'ed with

apraxia). The number of names for the same condition is just

ridiculous... And yet, maybe if House was doing the diagnosis and

through the magic of TV, we'd finally have some answers.

Sorry for the confusion...

>

> there is such a diagnosis of apraxia or dyspraxia in

> children here in the US and all over the globe. In fact the

> name " childhoodapraxiaofspeech " as long and stupid as it sounds and

> looks didn't even exist when my son Tanner was diagnosed

> with " apraxia or dyspraxia it means the same thing " (and old

archive

> on that below) I for one say do NOT let anyone put that diagnosis

> childhoodapraxiaofspeech in writing about your child because they

> don't stay 3 forever and it's a horrible name for a 12 year old -

> quite honestly I think I first heard about it when Tanner was

younger

> than 12 and it was still horrible to me. The horrible name we had

to

> fight then was " developmental apraxia of speech " or DAS which

> translated to " you won't get speech therapy " which ironically is

> probably a less offensive name than childhood since some don't know

> what it means...Oh who am I kidding they both are just crazy. In

the

> UK little kids are diagnosed every minute with dyspraxia and you

> don't see Harry Potter's coming out of the dyspraxia closet

> with " childhood dyspraxia " !!!! You guys keep going in this

direction

> and I'm not kidding -I'm changing Tanner's diagnosis to dyspraxia.

I

> think I may just do that anyway as there's too much craziness

> starting to go on in the apraxia world based on recent messages.

> Speaking of Dr. House -Dr. House would have a field day with all

the

> stupid names of apraxia! He'd need three board to write on just to

> list all of them!

>

> =====

>

[Guest guest]

don't know if you saw it but I IM'd you back. Please don't

think I'm blaming you. I'm the parent of a tween soon to be a teen

and that name who shall not be named has to be vanished. We may need

to call Harry Potter in real life to help!

=====

[Guest guest]

Hi

The 2 main cities nearest to me are Gainesville and

ville..both about an hour away but I am ok with traveling if I

can find someone qualified to evaluate her.

Thank you

>

> From: music_maker_68 <salas321@...>

> Subject: [ ] new member with a question

>

> Date: Thursday, November 20, 2008, 10:06 PM

>

>

>

>

>

>

> Hi everyone. I have a 3 year old daughter who I think might have

> apraxia.. but I live in a very rural area and the SLP that we are

> seeing doesn't really have experience with apraxia so she isn't

> comfortable DX it as of yet and the neurologist that we just saw

said

> that it could only be apraxia if she had speech and then lost it.

> Here is the info about my daughter and I would appreciate any info

> that anyone thinks might help me.

> -She never babbled at all as an infant..began to babble a little

bit

> around 1 1/2 years old and mostly even now calls everything ba ba

ba

> over and over..she does point to things and will lead you to what

she

> wants

> -Hearing tested fine

> -The only words she says are mama and baby (sounds like bebe like

she

> is speaking Spanish..which she isn't)

> -I have heard her say clearly each of the following words

once..fire,

> fish, bubble and red..but only one time for each word and never

said

> it again

> -She will not repeat the two words that she does know when asked to

> repeat or imitate them but she will repeat some sounds like ba and

> the letter sounds for k and g and m

> -she won't repeat any vowel sounds but she does use the long e and

> the short o and u and a when she is babbling

> -since she has began working with the SLP (about 8 months ago) she

is

> showing improvement. .mainly in that she is babbling more and

trying

> to talk and is repeating the consonant sounds and is signing

> -when asked to repeat something she moves her mouth like she is

> trying to comply but can't quite get it

> -she doesn't pucker her mouth to kiss but she can suck and blow

> through a straw but won't blow without a straw in her mouth

> -she can stick her tongue out sometimes but won't usually do this

> -she can blow raspberries make other noises using her tongue like

> clucking (not sure how to describe it..sorry)

> -her receptive skills seem slighly delayed but overall seem ok..we

> have been signing with her and she has picked that up pretty

quickly

> and will sign for things she wants

> -she also has low muscle tone and is in OT and PT

> _she has chewing and swallowing difficulties although these are

> showing some significant improvement

> -she still puts everything in her mouth all the time like an infant

> would and eats innapropriate things like soap and paper and such

>

> so..based on this information ...do you think it sounds like verbal

> apraxia? And do any of you know how I could go about finding a SLP

> in my area who specialized in apraxia so i could try to get a dx if

> that is what it is?

> thank you all for any help you can shed in this..it is so

frustrating

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Joy

I am in North FL..closest to ville and Gainesville. The neuro

we saw was based out of a hospital called Shands and I agree with you

that he is way off base in saying that it can't be apraxia unless she

was actually speaking words beforehand. All the research that I have

done says otherwise. I am going to print some of it out and fax it

to him. I am also looking for a different neuro for a 2nd opinion.

I had heard of the fish oils and she is taking a supplement..has been

for about 3 months but I haven't really seen any large improvement.

I have been considering trying acupuncture but financially just can't

swing it right now..hopefully soon though.

Thanks

>

> ,

> Where are you from? I live ina rural area too and I know how hard

it is to get the kind of help and answers you need. On thing you

mentioned was the neuro. saying she wasn't apraxic unless she spoke

first and lost her words..Well I don't know what school he/she went

to but let me tell you, some apraxic kids might say words and lose

them but not all! My daughter is 9 this month and was diagnosed at

age three (Houston) and she never had words to lose. She spoke " guy

guy guy " for everything. I hear that alot on this board. Not " guy "

but repeating sounds to talk. Like your daughter's " ba ba ba " , and

's son said " mmm mmm mmm " So I think your right in thinking she's

apraxic. Just my opinion, but I am sure others will agree with me.

Have you heard of using fish oils, and if so are you using them?

Please write back and tell us where in the country you are!

> Joy, mom to Shyann, 9

>

>

>  

>

>

[Guest guest]

Debra

Thank you for your reply. I am definitely going to get a 2nd

opinion..hopefully t won't take me too long to get in to a diff

neuro. How is your son doing now and how old is he now?

Thanks

> >

> > Hi everyone. I have a 3 year old daughter who I think might have

> > apraxia.. but I live in a very rural area and the SLP that we are

> > seeing doesn't really have experience with apraxia so she isn't

> > comfortable DX it as of yet and the neurologist that we just saw

> said

> > that it could only be apraxia if she had speech and then lost

it.

> > Here is the info about my daughter and I would appreciate any

info

> > that anyone thinks might help me.

> > -She never babbled at all as an infant..began to babble a little

> bit

> > around 1 1/2 years old and mostly even now calls everything ba ba

> ba

> > over and over..she does point to things and will lead you to what

> she

> > wants

> > -Hearing tested fine

> > -The only words she says are mama and baby (sounds like bebe like

> she

> > is speaking Spanish..which she isn't)

> > -I have heard her say clearly each of the following words

> once..fire,

> > fish, bubble and red..but only one time for each word and never

> said

> > it again

> > -She will not repeat the two words that she does know when asked

to

> > repeat or imitate them but she will repeat some sounds like ba

and

> > the letter sounds for k and g and m

> > -she won't repeat any vowel sounds but she does use the long e

and

> > the short o and u and a when she is babbling

> > -since she has began working with the SLP (about 8 months ago)

she

> is

> > showing improvement..mainly in that she is babbling more and

trying

> > to talk and is repeating the consonant sounds and is signing

> > -when asked to repeat something she moves her mouth like she is

> > trying to comply but can't quite get it

> > -she doesn't pucker her mouth to kiss but she can suck and blow

> > through a straw but won't blow without a straw in her mouth

> > -she can stick her tongue out sometimes but won't usually do this

> > -she can blow raspberries make other noises using her tongue like

> > clucking (not sure how to describe it..sorry)

> > -her receptive skills seem slighly delayed but overall seem

ok..we

> > have been signing with her and she has picked that up pretty

> quickly

> > and will sign for things she wants

> > -she also has low muscle tone and is in OT and PT

> > _she has chewing and swallowing difficulties although these are

> > showing some significant improvement

> > -she still puts everything in her mouth all the time like an

infant

> > would and eats innapropriate things like soap and paper and such

> >

> > so..based on this information ...do you think it sounds like

verbal

> > apraxia? And do any of you know how I could go about finding a

SLP

> > in my area who specialized in apraxia so i could try to get a dx

if

> > that is what it is?

> > thank you all for any help you can shed in this..it is so

> frustrating

> >

> >

>

[Guest guest]

Wow..THANK YOU for all the great info!!! I had never even heard of a

Neurodevelopmental pediatrician or ASHA. It is encouraging to hear

others agree with me that they think her symptoms sound like apraxia

(not that I want her to have something wrong but I do want to know

WHAT is wrong so we can go on the right path to help her all we can)

I didn't even know there was a difference between apraxia and

CAS..that seems absurd. I will take your advice about bring copies

of info that I have found to my next appts.

Thank you

Jssse

> >

> > Hi everyone. I have a 3 year old daughter who I think might have

> > apraxia.. but I live in a very rural area and the SLP that we are

> > seeing doesn't really have experience with apraxia so she isn't

> > comfortable DX it as of yet and the neurologist that we just saw

> said

> > that it could only be apraxia if she had speech and then lost

it.

> > Here is the info about my daughter and I would appreciate any

info

> > that anyone thinks might help me.

> > -She never babbled at all as an infant..began to babble a little

> bit

> > around 1 1/2 years old and mostly even now calls everything ba ba

> ba

> > over and over..she does point to things and will lead you to what

> she

> > wants

> > -Hearing tested fine

> > -The only words she says are mama and baby (sounds like bebe like

> she

> > is speaking Spanish..which she isn't)

> > -I have heard her say clearly each of the following words

> once..fire,

> > fish, bubble and red..but only one time for each word and never

> said

> > it again

> > -She will not repeat the two words that she does know when asked

to

> > repeat or imitate them but she will repeat some sounds like ba

and

> > the letter sounds for k and g and m

> > -she won't repeat any vowel sounds but she does use the long e

and

> > the short o and u and a when she is babbling

> > -since she has began working with the SLP (about 8 months ago)

she

> is

> > showing improvement..mainly in that she is babbling more and

trying

> > to talk and is repeating the consonant sounds and is signing

> > -when asked to repeat something she moves her mouth like she is

> > trying to comply but can't quite get it

> > -she doesn't pucker her mouth to kiss but she can suck and blow

> > through a straw but won't blow without a straw in her mouth

> > -she can stick her tongue out sometimes but won't usually do this

> > -she can blow raspberries make other noises using her tongue like

> > clucking (not sure how to describe it..sorry)

> > -her receptive skills seem slighly delayed but overall seem

ok..we

> > have been signing with her and she has picked that up pretty

> quickly

> > and will sign for things she wants

> > -she also has low muscle tone and is in OT and PT

> > _she has chewing and swallowing difficulties although these are

> > showing some significant improvement

> > -she still puts everything in her mouth all the time like an

infant

> > would and eats innapropriate things like soap and paper and such

> >

> > so..based on this information ...do you think it sounds like

verbal

> > apraxia? And do any of you know how I could go about finding a

SLP

> > in my area who specialized in apraxia so i could try to get a dx

if

> > that is what it is?

> > thank you all for any help you can shed in this..it is so

> frustrating

> >

> >

>

[Guest guest]

Hi

THANK YOU THANK YOU THANK YOU...I am in tears right now after reading

your post. Everyone that has responded to my post has been so kind

and helpful..it is like a huge burden has been lifted off of me..I

have been feeling so overwhelmed with all of this and spending hours

and hours on the net trying to research everything..I am typically

getting around 4 hours of sleep each night and even at that I feel

guilt for not researching longer. Finding this group and others too

is going to be so helpful and hopefully as I get more knowledgable I

will be able to help others here as well. I want to respond to your

post with some specific questions but it is 2:21 am here now and I am

starting to feel brain foggy LOL...so I will post back tomorrow. But

I just wanted to thank you for taking the time to help me and give me

those links and all the info

Thank you

>

> I'm going to go through each point you brought up:

> " -She never babbled at all as an infant..began to babble a little

bit

> around 1 1/2 years old and mostly even now calls everything ba ba ba

> over and over..she does point to things and will lead you to what

she

> wants "

>

> The lack of babble is a sign of concern. The pointing and attempts

> to communicate tell me there's the possibility that her receptive

> ability was above her expressive which also points to a disorder vs

a

> delay. But those signs in themselves wouldn't mean apraxia.

>

> " -Hearing tested fine "

> Great!

>

> '-The only words she says are mama and baby (sounds like bebe like

she

> is speaking Spanish..which she isn't) "

>

> No progression of building on words she already knows- using the

same

> word for different meanings is a red flag.

>

> " -I have heard her say clearly each of the following words

once..fire,

> fish, bubble and red..but only one time for each word and never said

> it again:

>

> To say a word or do an action once and not being able to say or do

it

> again is a classic sign of apraxia.

>

> " -She will not repeat the two words that she does know when asked to

> repeat or imitate them but she will repeat some sounds like ba and

> the letter sounds for k and g and m "

>

> Not being able to perform on command is another classic sign of

> apraxia. It has nothing to do with not wanting to do it -it has to

> do with not being able to. The " b " sound I suspect is in her " motor

> memory and besides like the sound of the letter " m " it's a frontal

> sound which comes easier to most apraxic children. If she does have

> apraxia you are fortionate that she already has the " K " and " G "

sound

> down as many of our kids have trouble with those sounds.

>

> " -she won't repeat any vowel sounds but she does use the long e and

> the short o and u and a when she is babbling "

>

> Again it may not be that she " won't " but that she can't repeat the

> vowel sounds. Apraxia is a strange condition where you can say a

> vowel after a certain consonant but not after another. Where you

can

> say a sound when it's after or before another sound but not in

> isolation. If it doesn't make sense -that's apraxia.

>

> " -since she has began working with the SLP (about 8 months ago) she

is

> showing improvement..mainly in that she is babbling more and trying

> to talk and is repeating the consonant sounds and is signing "

>

> Excellent -she should be in a preschool special needs placement as

> well. Is she? If she has an IEP what are her goals? Did you share

> the book The Late Talker with your child's neurologist. Perhaps

> since you are out in the boonies you can bring the boonies up to

> speed? It's important to work hand in hand with a

neurodevelopmental

> medical doctor as many children with apraxia also have " soft signs "

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

parentfriendlysoftsigns.html

>

>

> " -when asked to repeat something she moves her mouth like she is

> trying to comply but can't quite get it "

>

> Groping -don't remind me but that's one of the first signs of

> apraxia -typically found in preschool children.

>

> " -she doesn't pucker her mouth to kiss but she can suck and blow

> through a straw but won't blow without a straw in her mouth

> -she can stick her tongue out sometimes but won't usually do this

> -she can blow raspberries make other noises using her tongue like

> clucking (not sure how to describe it..sorry)

> _she has chewing and swallowing difficulties although these are

> showing some significant improvement

> -she still puts everything in her mouth all the time like an infant

> would and eats innapropriate things like soap and paper and such "

>

> All of these can be signs of oral motor issues which can be due to

> motor planning, weakness. Probably she should be evaluated by an

> oral motor SLP for oral apraxia as well as verbal.

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

>

> I can comment on more but have to run out so just going through

these

> quick but in a nutshell there are developmental stages your daughter

> probably missed that she's going through now. As they say better

> late than never.

>

> " -her receptive skills seem slighly delayed but overall seem ok..we

> have been signing with her and she has picked that up pretty quickly

> and will sign for things she wants "

>

> Oooh you don't want to go there with your 3 year old who may have

> apraxia. Please give her the benefit of the doubt that she has lots

> on her plate she's dealing with and there are many things she wants

> to do but just can't yet and needs to be taught how. Self esteem is

> so precious and if you give up on her who else will believe in her?

>

> " -she also has low muscle tone and is in OT and PT "

> Hypotonia -see soft signs of apraxia above.

>

> Based on what you wrote yes it sounds like she has apraxia.

> Here's a cut and paste from one new member archive with a bit more

> info -hope this helps to start!

>

> To answer any questions you may have about taking your child to see

a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> http://contemporarypediatrics.modernmedicine.com/radio_peds4

>

> Actual article (where you can read it for free)

>

> http://drgreene.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

> or

> http://opsc.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

>

> My parent guide still works (for free)

> http://www.contemporarypediatrics.com/contpeds/data/articlestandard/

co

> ntpeds/492004/136315/article.pdf

>

> I would also have at least one private " out of pocket " (if possible)

> exam with a knowledgeable speech pathologist as well. This SLP can

> coordinate with your child's MD, and school therapist and other

> professionals, and again be there to assist in a therapeutic plan,

> help set goals and oversee your child's development over the years

> if needed.

>

> Networking with parents of other speech-impaired children is also

> possibly one of the best moves you could make in your child's

> recovery. Others will steer you to the " right " professionals and

> programs in your area -and you won't feel so alone. I would HIGHLY

> recommend joining a whose goal is to unite parents and

> professionals. This group

> / is through CHERAB

> http://www.cherab.org

>

> The speechville website also has message boards so that you can talk

> to other parents on particular topics.

> http://www.speech-express.com/boards/

>

> Check your state resources at Speechville to find local support

> groups and resources.

> http://www.speech-express.com/regional-resources.html

> http://www.speech-express.com/communication-station/regional-

support-groups.html

> (BTW -for anyone who is either running or starting a support group -

> due to The Late Talker book and the many who will see your group,

> please make sure your info is up at this website and accurate)

>

>

> PS your email name is music maker -have you thought about music

> therapy?

>

>

> =====

>

[Guest guest]

Thanks for the info. I will try calling the children's hospitals

near me and see they can help us! I don't even mind traveling as

long as it was to see someone who is familiar with apraxia..

THanks again!

>

> Hi ,

>

> Looks like you have received a lot of replies already. I haven't

> gone through them, so sorry if this is repeat information!

>

> We live in a rural area also. I called the 2 closest Children's

> Hospitals and asked to be connected to the Speech Dept. I

> specifically asked if they were familiar with apraxia and luckily

> many of them were and I was able to go to Akron Children's where

all

> of her other specialists are located.

>

> We had our 2yo DD evaluated this past Tuesday and finally received

a

> provisional diagnosis of verbal apraxia. The SLP is going to

> reccomend one-on-one therapy with a re-eval in 6 months.

>

> Our DD is in Early Intervention, but as we are learning, that is a

> " blanket " program. Don't get me wrong...it has REALLY helped with

> her sensory issues, but obviously not her speech. I work at the

> local hospital and have talked to the SLP here and also the SLP at

> early intervention and neither were really familiar with apraxia,

so

> we went to the people who are!

>

> Hope this helps!

>

> in OH

>

[Guest guest]

I have a question, it was said that not being able to perform on command is

a sign of apraxia. But if you are working with your child say doing the

kaufman cards and they do perform on command by saying the sound does that mean

that they don't have apraxia, or that maybe they have just mastered that sound

for the moment? Jen

**************One site has it all. Your email accounts, your social networks,

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[Guest guest]

>

> My question is as to whether I ignore the surgeon's warning about the 90

degrees, as I did just now? How do others manage life with the 90 degree rule?

> Gail

>

Hi Gail,

I got my first THR 1 week ago today and expect to have the second done later

this year. I also wonder how people with 2 THR's manage. I understand some

workarounds for one hip, but two? I'd particularly like to hear from folks who

have anterior-lateral surgeries, as I do not have the option of the anterior

approach, and that situation is not a problem for me personaly. From stories

I've heard, I believe that if the muscles around the operated hip are quite

strong because we've been working hard in physical therapy, the likelihood of

dislocation decreases, even though it still exists. Anyway, I don't want any

more surgery after the second hip, so I hope we hear from others about their

experiences.

Good luck to you!

Alice in Boulder

[Guest guest]

Gail, I had my TLHR done last year. My surgeon told me the same thing.

ly, that's not realistic. No one can live the rest of their lives NEVER

having to bend past 90 degrees, etc. So my opinion is, follow the rules as much

as you can, and if you do have to break the rules, just be careful. I

personally, still use the reachers to pick up dropped objects. Not only is it

better for my hip, but it's better for my back/spine in general. But, I still

do bend over to put on socks, tie my shoes, etc.

There's my two cents.

Tammy Klaus

LTHR May, 2008

tammy.kl@...

New Member With A Question

Hello All,

I have been doing some reading here for the past couple of weeks.

I am about two and a half months post THR, right side. I'll be having the other

hip replaced in the fall, as I have developmental HD, which has pretty much

incapacitated me for the past few years.

We have an old house, and the step into the back bedroom is very high, so even

helping myself up with a paint can to give me an extra step, I haven't been able

to go into that bedroom for three or four years. It's our spare room, and I have

had to count on my husband to tidy and clean it, as well as make the bed, etc.

Well, I took the chance just now, and went down that step with my Zimmer (rigid

walker). No problem getting down. And of course I found a lot of things that

need doing in that room, assuming my husband does actually do as I ask him, and

remove his many cardboard boxes of wine, as well as a lot of Christmas stuff and

odds and ends that need to be put away. Well, there's a lot to be done, before

company on the week-end, including getting rid of thse paint cans...:-)

So, I took the chance, and with the help of my zimmer, I heaved myself back up

that step, new leg first (my other leg would never have made it). It didn't

dislocate my new hip, thank heavens. The thing is, my surgeon has told me that I

must never--as in never in my lifetime again-- bend that leg past 90 degrees. I

had to bend it well past 90 degrees to get up that high step. I also would have

to bend past 90 degrees to put on my own socks, or touch my feet at all. I am

dependent on my husband for anything past mid-shin. And that also means that

when I get a bad cramp in my shin during the night, I have to wake him up and

get him to massage my shin above the ankle. Not good.

My question is as to whether I ignore the surgeon's warning about the 90

degrees, as I did just now? How do others manage life with the 90 degree rule?

Gail

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