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Thanks for all of the feedback. & nbsp;Yes his expressive language is minimal and

we try sign language but he only uses it for things that he wants and colors.

& nbsp;I can't really carry a conversation about feelings or thoughts but he has

an ipad and he uses it pretty well to tell me his feelings. & nbsp;Recently like

I posted before he did SAY " mom car " and his speech when imitating is becoming

more clear. & nbsp;I did get an appointment with a neurodevelopmental

pediatrician who felt like he should be evaluated. So I'm relieved and can't

wait to see what happens. & nbsp;Also for his birth they used a vacuum and

forceps (sp?) so I'm wandering if there was damage from that. & nbsp;The DS

doesn't affect him much in my opinion. & nbsp;He " looks typical " but has low

muscle tone.

Sent from my Palm Pre on the Now Network from Sprint

On Aug 3, 2011 4:20 PM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt;

wrote:

& nbsp;

Not saying he does not have apraxia, but he had to have spoken quite a bit for

the speech therapist to notice the hallmark signs and symptoms of apraxia.

I copied this from the ASHA website for you, which includes the hallmark signs

and symptoms, one of which is groping of the mouth when speaking.

What is childhood apraxia of speech?

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS

have problems saying sounds, syllables, and words. This is not because of muscle

weakness or paralysis. The brain has problems planning to move the body parts

(e.g., lips, jaw, tongue) needed for speech. The child knows what he or she

wants to say, but his/her brain has difficulty coordinating the muscle movements

necessary to say those words.

What are some signs or symptoms of childhood apraxia of speech?

Not all children with CAS are the same. All of the signs and symptoms listed

below may not be present in every child. It is important to have your child

evaluated by a speech-language pathologist (SLP) who has knowledge of CAS to

rule out other causes of speech problems. General things to look for include the

following:

A Very Young Child

¡Does not coo or babble as an infant

¡First words are late, and they may be missing sounds

¡Only a few different consonant and vowel sounds

¡Problems combining sounds; may show long pauses between sounds

¡Simplifies words by replacing difficult sounds with easier ones or by

deleting difficult sounds (although all children do this, the child with apraxia

of speech does so more often)

¡May have problems eating

An Older Child

¡Makes inconsistent sound errors that are not the result of immaturity

¡Can understand language much better than he or she can talk

¡Has difficulty imitating speech, but imitated speech is more clear than

spontaneous speech

¡May appear to be groping when attempting to produce sounds or to coordinate

the lips, tongue, and jaw for purposeful movement

¡Has more difficulty saying longer words or phrases clearly than shorter ones

¡Appears to have more difficulty when he or she is anxious

¡Is hard to understand, especially for an unfamiliar listener

¡Sounds choppy, monotonous, or stresses the wrong syllable or word

Potential Other Problems

¡Delayed language development

¡Other expressive language problems like word order confusions and word

recall

¡Difficulties with fine motor movement/coordination

¡Over sensitive (hypersensitive) or under sensitive (hyposensitive) in their

mouths (e.g., may not like toothbrushing or crunchy foods, may not be able to

identify an object in their mouth through touch)

¡Children with CAS or other speech problems may have problems when learning

to read, spell, and write

Return to Top

How is childhood apraxia of speech diagnosed?

An audiologist should perform a hearing evaluation to rule out hearing loss as a

possible cause of the child's speech difficulties.

A certified-SLP with knowledge and experience with CAS conducts an evaluation.

This will assess the child's oral-motor abilities, melody of speech, and speech

sound development. The SLP can diagnose CAS and rule out other speech disorders,

unless only a limited speech sample can be obtained making a firm diagnosis

challenging.

An oral-motor assessment involves:

¡checking for signs of weakness or low muscle tone in the lips, jaw, and

tongue, called dysarthria. Children with CAS do not usually have weakness, but

checking for weakness will help the SLP make a diagnosis.

¡seeing how well the child can coordinate the movement of the mouth by having

him or her imitate nonspeech actions (e.g., moving the tongue from side to side,

smiling, frowning, puckering the lips)

¡evaluating the coordination and sequencing of muscle movements for speech

while the child performs tasks such as the diadochokinetic rate, which requires

the child to repeat strings of sounds (e.g., puh-tuh-kuh) as fast as possible

¡examining rote abilities by testing the child's skills in functional or

" real-life " situations (e.g., licking a lollipop) and comparing this to skills

in nonfunctional or " pretend " situations (e.g., pretending to lick a lollipop)

A melody of speech (intonation) assessment involves:

¡listening to the child to make sure that he or she is able to appropriately

stress syllables in words and words in sentences

¡determining whether the child can use pitch and pauses to mark different

types of sentences (e.g., questions vs. statements) and to mark off different

portions of the sentence (e.g., to pause between phrases, not in the middle of

them)

A speech sound (pronunciation of sounds in words) assessment involves:

¡Evaluating both vowel and consonant sounds

¡Checking how well the child says individual sounds and sound combinations

(syllables and word shapes)

¡Determining how well others can understand the child when they use single

words, phrases, and conversational speech.

An SLP may also examine the child's receptive and expressive language skills and

literacy skills to see if there are co-existing problems in these areas.

To contact a speech-language pathologist, visit ASHA's Find a Professional.

What treatments are available for children with apraxia of speech?

Research shows the children with CAS have more success when they receive

frequent (3-5 times per week) and intensive treatment. Children seen alone for

treatment tend to do better than children seen in groups. As the child improves,

they may need treatment less often, and group therapy may be a better

alternative.

The focus of intervention for CAS is on improving the planning, sequencing, and

coordination of muscle movements for speech production. Isolated exercises

designed to " strengthen " the oral muscles will not help with speech. CAS is a

disorder of speech coordination, not strength.

To improve speech, the child must practice speech. However, getting feedback

from a number of senses, such as tactile " touch " cues and visual cues (e.g.,

watching him/herself in the mirror) as well as auditory feedback, is often

helpful. With this multi-sensory feedback, the child can more readily repeat

syllables, words, sentences and longer utterances to improve muscle coordination

and sequencing for speech.

Some clients may be taught to use sign language or an augmentative and

alternative communication system (e.g., a portable computer that writes and/or

produces speech) if the apraxia makes speaking very difficult. Once speech

production is improved, the need for these systems may lessen, but they can be

used to support speech or move the child more quickly to higher levels of

language complexity.

Practice at home is very important. Families will often be given assignments to

help the child progress and allow the child to use new strategies outside of the

treatment room, and to assure optimal progress in therapy.

One of the most important things for the family to remember is that treatment of

apraxia of speech takes time and commitment. Children with CAS need a supportive

environment that helps them feel successful with communication. For children who

also receive other services, such as physical or occupational therapy, families

and professionals need to schedule services in a way that does not make the

child too tired and unable to make the best use of therapy time.

To contact a speech-language pathologist, visit ASHA's Find a Professional.

What other organizations have information about childhood apraxia of speech?

This list is not exhaustive and inclusion does not imply endorsement of the

organization or the content of the Web site by ASHA.

¡Apraxia-Kids information site

¡National Institute on Deafness and Other Communication Disorders

¡Speechville Express

Aphasia, which is different from apraxia, is caused from a TBI, whether it be

hypoxia (like lack of oxygen after or during birth), brain tumor, infection,

stroke, bleeding in the brain, etc...

A follow-up with a neurologist is for sure in order; so, you are on the right

track. But be forewarned, most neurologists rely on what the SLP says. My son

has been with this SLP (and she is the best I have seen in GA), and she just now

admits he has a concurrent diagnosis of aphasia (whereas she refused to admit

before because apraxia gets the most insurance pay from the insurance company

already and there was no need to visit aphasia in her eyes).

True apraxia is considered very rare in children.

I welcome you to join a Facebook group I created called " Speech & amp; Language

Disorders in Children " . I post a lot of good information and resources on this

group.

I have been on this journey for a long time with speech and language issues, and

I know it is imperative you get immediate help/intervention as early as

possible; I also know it is critical to get the correct diagnosis (or

diagnoses). Your child might have more than one S/L diagnosis. There is no doubt

in my mind that if your child has been diagnosed with ASD, then there is some

sort of expressive language disorder. Have you tried sign language? We use it

with great success. Without signing, my son has very , very little receptive

speech; with sign, his receptive understanding of speech rises to 100%.

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bring back memories. What is the general consensus about

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Down syndrome community these days? In 1989, when Ian was

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happened around the same time as the tongue surgery

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He has Translocation DS. Neither his father nor I carry the gene so it was just

one of those things. & nbsp;Unfortunetly I'm not on facebook yet but I'll sign up

and join. & nbsp;Thank you for sharing your knowledge. & nbsp;Does your son

have MDS?

Sent from my Palm Pre on the Now Network from Sprint

On Aug 3, 2011 6:03 PM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt;

wrote:

& nbsp;

Sounds like MDS if he looks typical (see my son's Facebook page and view his

photos; search on facebook for CHARLIE HART TENEYCK). There is also quite a bit

of information on there about speech; feel free to like the page. Also, don't

forget to join the other FB group for Speech & amp; Language Dsorders in

Children. (lots of info there)

Not sure about the vaccum & amp; forceps, but cannot be a good thing either way.

Even though your son does not reciprocate sign very much, trust me...he is

receptively *getting it*. Keep it up, as sign bridges the communication gap in

children with severe speech and language disorders.

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& amp;amp;amp;amp;gt; **

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& amp;amp;amp;amp;gt; Boy, does this bring back memories. What is the general

consensus about

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& amp;amp;amp;amp;gt; Piracetem in the Down syndrome community these days? In

1989, when Ian was

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& amp;amp;amp;amp;gt; born, it was *highly* controversial. The woman who was

touting it most was

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& amp;amp;amp;amp;gt; showing pictures of " improved " facial features -- and there

was an uproar

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& amp;amp;amp;amp;gt; about how kids with Down syndrome don't have faces that

need improvement.

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& amp;amp;amp;amp;gt; You couldn't mention Piracetem on a Down syndrome email

list without

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& amp;amp;amp;amp;gt; starting huge flame wars.

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& amp;amp;amp;amp;gt; After we made the decision to ignore Piracetem, we lost

connection with the

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& amp;amp;amp;amp;gt; discussion. Is it generally perceived to be helpful at all?

I remember

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& amp;amp;amp;amp;gt; charges of overmedication causing potential health risks,

and the

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& amp;amp;amp;amp;gt; illegality

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& amp;amp;amp;amp;gt; of importing it from other countries.

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& amp;amp;amp;amp;gt; The Piracetem to-do happened around the same time as the

tongue surgery

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& amp;amp;amp;amp;gt; wars. That was quite a time. Of course, Life Goes On came

on that year, so

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& amp;amp;amp;amp;gt; Down syndrome was in the public conscious.

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& amp;amp;amp;amp;gt; CK

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Guest guest

Oh no it's just Translocation lol. & nbsp;Charlie is a cutie. & nbsp;My CJ is 9 :)

& nbsp;Have you read anything about stem cell therapy? & nbsp;My mom found a sight

about a series of injections given to patients but it's no done here yet.

& nbsp;I'm wondering if something like that would help our kids either

cognitively or repair the part in their brain with the speech disorder?

Sent from my Palm Pre on the Now Network from Sprint

On Aug 3, 2011 7:40 PM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt;

wrote:

& nbsp;

De novo Translocation Down Syndrome is very rare. Interesting.

My son does have MDS (50%), was rediagnosed age 3 1/2 years of age and that was

his percentage then.

Is your son's DS Mosaic Translocation (even rarer, but nothing surpises me)?

You are welcome.

And come visit us on Facebook.

P.S. You might be able to google " Charlie Hart TenEyck + Facebook " and at least

see his picture. You *can* google " Charlie Hart TenEyck " and he will come up as

well.

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; **

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; Boy, does this bring back

memories. What is the general consensus about

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; Piracetem in the Down syndrome

community these days? In 1989, when Ian was

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; born, it was *highly*

controversial. The woman who was touting it most was

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facial features -- and there was an uproar

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; You couldn't mention Piracetem

on a Down syndrome email list without

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; After we made the decision to

ignore Piracetem, we lost connection with the

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& amp;amp;amp;amp;amp;gt; & amp;amp;amp;amp;amp;gt; discussion. Is it generally

perceived to be helpful at all? I remember

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causing potential health risks, and the

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Guest guest

Yea that's very true!!!!! It is a ridiculous fee they are requesting.

Sent from my Palm Pre on the Now Network from Sprint

On Aug 4, 2011 8:55 AM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt;

wrote:

& nbsp;

If TBI has killed the brain tissue (due to lack of blood flow), then no, stem

cells will not help.

I am very familiar with stem cell therapy (I do a lot of research in the field

of genetics and also in neurology), and you must be very careful. I always

explain it this way: ALL DNA is defective; no human is perfect. And the stem

cells are coming from another human; otherwise, you are implanting the same

defective cells back into the same host.When you intermix cells like this, you

are opening yourself up for the potential of other conditions you do not already

have or might have otherwise not had expressed without *extra* stem cells to set

it off.

I think stem cell therapy is not only very risky, but also very expensive.

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& amp;amp;amp;amp;amp;gt; Not anticipating a change in *looks* because I am not

going to give him this for DS; I am anticipating on *hearing* a change.

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Guest guest

Wow that's amazing! I did not know that. I'll have to look back and see his

results. & nbsp;You are very knowledgable about this stuff. Is this your line of

work or passion?

Sent from my Palm Pre on the Now Network from Sprint

On Aug 4, 2011 9:00 AM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt;

wrote:

& nbsp;

P.S. Forgot to mention, if anything less than 500 cells (actually greater than

459 cells, but 500 is a nice round number) were counted in the karyotype, then

there is a HUGE chance the karyotype is incorrect (Exclusion of Chromosomal

Mosaicism within 90%, 95%, and 99% confidence limits by Hook;

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1685228/

And standard in the industry is merely 20. It may be in your child's case that

TMDS is a possibility.

Oh, and thanks for the compliment on Charlie Hart. :)

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& gt;

& gt; & amp;gt; & amp;amp;gt; & amp;amp;amp;gt; & amp;amp;amp;amp;gt;

& amp;amp;amp;amp;amp;gt; Not anticipating a change in *looks* because I am not

going to give him this for DS; I am anticipating on *hearing* a change.

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt; & amp;amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt; & amp;amp;amp;gt; & amp;amp;amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt; & amp;amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt; & amp;amp;amp;gt; & amp;amp;amp;amp;gt;

& amp;amp;amp;amp;amp;gt;

& gt;

& gt; & amp;gt;

& gt;

& gt; & amp;gt; & amp;amp;gt;

& gt;

& gt; & amp;gt;

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