Re: Re: chiari 1 and nvl

[Guest guest]

Here is some information from ASHA on nvl

Sharon

What Is NLD and What’s It Have to Do With Me?

NLD is a subtype of learning disability that has been the subject of intense

scrutiny by Byron Rourke, a neuropsychologist at the University of Windsor. He

and his colleagues (see references) have identified two reliable subtypes of

learning disability. They call one group Basic Phonological Processing Disorder.

Children in this category fit well within our traditional views of language

learning disability or specific language impairment. These are children who are

characterized by poor speech and language skills and extraordinary difficulty

with reading and writing, but who demonstrate relatively preserved nonverbal

problem solving. Generally, their performance IQ is within normal limits, but

verbal IQ scores are significantly depressed.

Rourke calls the other group Nonverbal Learning Disability. Children placed in

this group display a profile of skills that is largely opposite from the first

group. Verbal IQ scores, for example, are well within normal limits, whereas

nonverbal IQ lags behind. These children have difficulty with nonverbal problem

solving, visual-spatial-organizational skills, tactile perception, and complex

psychomotor behavior but, on the surface at least, they appear to have good

language skills. They talk (often excessively), they use a variety of sentence

structures, they can memorize and repeat vast amounts of verbal material, and

they demonstrate average to above-average abilities in single-word reading and

spelling.

At first glance, it may seem that SLPs have no role to play in the management of

these children. Despite their verbal fluency, however, children and adolescents

with NLD exhibit substantial communication and language problems. The key to

understanding their communication dysfunction is that their apparent competence

in language is superficial. Whenever situations call for deep or elaborated

comprehension, use of contextual information, or sophisticated social

competence, children with NLD are likely to perform poorly, demonstrating just

how shallow their abilities are.

Causes

According to Rourke, NLD manifests itself to some degree whenever significant

amounts of white matter in the brain are destroyed or dysfunctional.

Specifically, he proposes that damage to the white matter in the right cerebral

hemisphere is particularly influential. As plausible as this model may be, it is

far from definitive. Other authors have suggested that the symptoms seen in NLD

also may have their roots in deficits in working memory (neither a specific

right-hemisphere nor white-matter function) or in executive processes (generally

spoken of as a frontal-lobe function). At the very least, confirmation of

Rourke’s hypothesis awaits imaging studies such as fMRI.

kiddietalk <kiddietalk@...> wrote:

> Someone mentioned a connection between the mom having chiari 1

and the child having a nonverbal learning disability. I had never

heard of this correlation before.

No have not heard that before -but it's good to put it out there and

see if anyone answers. Anyone else have chiari 1 and is the parent of a child

diagnosed with a nonverbal learning disability?

Then again NLD is not a speech/language delay or impairment...

(most are here for those reasons)

" There is an excellent vocabulary and more than typical verbal

expression, starting at a young age. "

http://www.nldontheweb.org/tanguay_3.htm

'What is NLD? Nonverbal learning disorders (NLD) is a neurological

syndrome consisting of specific assets and deficits. The assets

include early speech and vocabulary development, remarkable rote

memory skills, attention to detail, early reading skills development

and excellent spelling skills. In addition, these individuals have

the verbal ability to express themselves eloquently. Moreover,

persons with NLD have strong auditory retention. Four major

categories of deficits and dysfunction also present themselves:

•motoric (lack of coordination, severe balance problems, and

difficulties with graphomotor skills).

•visual-spatial-organizational (lack of image, poor visual recall,

faulty spatial perceptions, difficulties with executive function*

and problems with spatial relations).

•social (lack of ability to comprehend nonverbal communication,

difficulties adjusting to transitions and novel situations, and

deficits in social judgment and social interaction).

•sensory (sensitivity in any of the sensory modes: visual, auditory,

tactile, taste or olfactory)

http://www.nldline.com/

But nope they are different too -here's a website from a parent who

has one child with each diagnosis and she explains the difference

http://www.nldline.com/newpage27.htm

We do have some members who have a child with chiari 1 malformation.

Here's just a few of the archives -I tried to include the emails so

you can email them and see if anything runs in the family tree.

Hope this helps a bit:

~~~~~~~~~~~~

Hello to all,

We took JJ for his follow up yesterday. As of yet, the neurologist

cannot explain his regression in speech and development, he doesn't

want to blame it on the chiari.

He has referred us to the specialist at U of M that deals directly

with autism, he told us there is a high likelihood that JJ is mildly

autistic. I don't see it, especially since JJ tries to communicate

through signs, etc. And I would say for 2 weeks now he has had alot

to say (though he can't say it).

Surgery may be an option for us at this point, however, we have to

take JJ for his follow up MRI where they will check CSF flow and the

amount of the herniation in his brain. It's all hurry up and wait.

Your prayers are appreciated.

Re: [ ] New member

Hi Laurie,

Oh my! Your Mic sounds just like my son JJ. He has

speech of about eight words prior to his first

birthday and after that he quit talking except for

Dada. He also quit eating anything (especially table

food) for at least 3 months. His ped. told me not to

worry about, however, his dad and I put him on

Pediasure ourselves. He started eating some baby food

again, but he only has a diet now of cereal, bananas,

and chicken nuggets. Sometimes a cracker or two, or

maybe a piece of toast. But he puts everything in his

mouth whole and then moves it back and forth.

Sometimes he might swallow, others he just spits it

out. Most recently we had an EEG and and MRI and

found out that he has other issues besides his

apraxia. By the way, he has serious sensory

dysfunction problems also. Anyhow, to make a long

story short, he has a Chiari 1 brain malformation.

We're dealing with that.

On to your question about some oral motor activities.

Are you letting Mic use a toothbrush? JJ loves to

brush his teeth (he probably does it about 20 times a

day ;-)). We have been using ice to get him used to

us being in his mouth and suckers. This has helped

him some, because prior to his speech therapy he

couldn't tolerate anything cold.

He doesn't like people to touch his mouth too often or

his face for that matter, but we let him do most of

the work.

If you have any more questions please feel free to

contact me.

Kim,

Mom to Carissa age 9, normal as can be, and JJ 23

months, apraxic, sensory integration dysfunction and

most recently ACM1

propanegirl@...

Re: [ ] Re: Neuro-psychological assessments?

.........to add to 's point......BOTH of my boys were MIS

diagnosed as

Autism/PDD...BOTH were late talkers...NEITHER of them is autistic or

showed ANY

(IN MY OPINION) of autism in ANY WAY. It's a great " umbrella " to

use, because

it covers MANY things. Please don't be afraid to ask questions, and

find

another doctor if you're not comfortable with what's going on. When

I mentioned

apraxia to my pediatrician, and his response was " what's

that " ...let's just say

I knew I was on my own.

You are you child's LOUDEST VOICE....don't ever forget that.

~Karyn

[ ] Re: Neuro-psychological assessments?

Hi Kim,

I am not an expert on Arnold Chiari Malformation 1, however as a

parent who has been there twice -I do have some suggestions for you

to raise to your child's neurologist.

As far a surgery -typically I suggest second opinions, and after

speaking with MDs you respect finding out if it's possible to wait

out surgery to do it at a later age. (This is what we did for my son

Dakota who also had huge adenoids and tonsils which blocked his

hearing and was credited to his late speech as well. We were

advised this by friends who are MDs to " wait if possible until he is

three " for Dakota since it's hard to explain surgery to a two year

old. We were told by Dakota's doctors we could wait, and by the

time Dakota was three -the age we were told we could wait until -

Dakota no longer required the surgery and we were all thrilled.)

However since JJ is diagnosed with Arnold Chiari Malformation 1

(ACM) -it

appears from what I read

that surgery can prevent further paralysis and may be crucial. And

I even read it may reverse symptoms? So I wouldn't suggest in your

case holding off on surgery if it is needed and confirmed by a

second opinion (second opinions in my opinion are only from MDs who

are based out of an entirely different hospital systems from each

other)

Here are my concerns to raise based upon your posts here:

I'm sure paralysis may be a sign of ACM -but how does anyone know

that the " possible paralysis of the voice box " (Larynx ) that the

one MD suspects isn't from the ACM as you say is common -but instead

apraxia of the voice box (larynx)? The larynx is one of the areas

of speech typically affected by apraxia as you know. I'm saying

this especially since the neurologist diagnosed JJ as having

apraxia.

I received a call from the Reeve Foundation based upon a

post I sent here asking what is the difference between partial

paralysis

and severe apraxia since both are problems of the brain sending

signals to the muscles of the body where the signals sometimes go

through -and sometimes do not. I was asked to submit a paper at

that time -they were interested (and I am not a PhD!) I just did a

search and here is an article on this:

'PATTERNS OF LARYNGEAL APRAXIA IN TWO PATIENTS WITH BROCA'S APHASHIA'

http://www.phonetik.uni-muenchen.de/~hoole/pdf/laraos_fipkm.pdf

Is JJ responding to appropriate intensive therapies for apraxia?

Have you tried EFAs? If not, why not? Other than regression and

lack of speech -is JJ showing any signs at all of autism? If I read

correctly -solely based on JJ's lack of speech is autism being

suspected -is this true? Do you believe JJ is autistic, or has

autistic tendencies? Are you and JJ's MDs aware that if JJ is not

autistic -yet is given that diagnosis solely due to his lack of

speech he will almost definitely be given ABA therapy which is not

appropriate

for a

child (or anyone) who does not require ABA therapy (autistic,

behavioral problems)? ABA therapy does not provide enough speech or

occupational therapy for a child with a motor planning problem of

speech. Typically children with apraxia also have weakness of the

muscles somewhere in the body as well -does JJ have any hypotonia or

dysarthria? If so -he would need strengthening therapies as well as

motor planning therapies. ABA therapy again does not provide the

therapy that is needed to help JJ to speak if he is not autistic.

Again -my concern is why the jump to autism when there has only been

a 4 fold rise in autism in the last 10 years, while there has been a

30 fold rise in speech and language impairments in the same time

period according to Dr. Mark Geier's study of the US Department of

Education Statistics.

http://www.cherab.org/information/geiermd.html A name is not just a

name when it comes to late talkers/speech impaired -therapy is what

separates the conditions -and is most important in accurate

diagnosis.

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

Conditions can overlap of course -you can have a child with CP and

apraxia, or autism and apraxia -or in your child's case Arnold

Chiari Malformation 1 and apraxia, etc. etc. Apraxia can also stand

alone. The average child who has apraxia has some amount of mild

hypotonia (even though for some such as Carolyn's or Suzanne's child

can be severe) -and also has some amount of sensory integration

dysfunction. With DSI however -I hate when people credit lack of

speech to DSI " processing issues " OT is critical for almost all

(all?) who have speech and language disorders -however DSI therapy -

which is primarily OT therapy is not going to solely treat an

apraxic child. Therapy again is the division.

If apraxia is diagnosed -and the child is nonverbal -in addition to

treating the Arnold Chiari Malformation 1 in whatever way needed -I

suggest you speak with your child's MD about aggressively treating

the apraxia and see what happens to JJ's speech. Has there been

improvements

already?

I know you have read messages from those with apraxic children who

were misdiagnosed as autistic and were given ABA therapy. Again -

ABA therapy is wonderful for a child with PDD or autism or

behavioral problems -it is not appropriate for a child with apraxia

or other speech and language disorders who require various types of

multisensory speech and occupational therapies, and as 19 year old

's mother Robin has so painfully reminded us more than once -

may be detrimental.

So when you go for JJ's long awaited neuropsychology exam to see if

he has autism -raise these questions about therapy. Perhaps before

the appointment -ask the neurologist if you can start JJ on EFAs if

you didn't start them already -results are typically in a day to

three weeks for most with speech and language delays from various

reasons ranging from PDD/autism and apraxia -to " just " late

talkers. Based on what you said -being that lack/regression of

speech is the only " sign " of autism -if JJ starts surging in speech

in the next day to three weeks -the MDs can cross autism off the

list of possible diagnosis.

Wow. No wonder the neurologist couldn't answer your question will

JJ ever talk -doesn't appear he's sure what is causing the lack of

speech to begin with. Do you have The Late Talker book?

http://www.speech-express.com/late.talker.html Why not ask him if he

wants to borrow your copy?

I'm sure that Dr. Agin will answer you soon. Of course even an MD

or any professional won't be able to know for sure unless they

themselves evaluated JJ and knew his history. Hope my suggestions

helped a bit.

My prayers are with you and JJ, and I'm sending you positive energy.

=====