Re: apraxia vs. brain stem damage

[Guest guest]

If I were you, I would start the NV and Fish Oils. They will not hurt

your son, and I believe that you will be giving him nothing but a

possible step up with no real possible side effects... really. If you

are like me, you would do anything to help him... just like I would do

anything for my girl.

When he says, " Mommy, you are a weirdo-smeardo " (something my daughter

said to me yesterday) you will appreciate it... for years I wanted her

to talk so much, and thanks to her suppliments I have that now.

The earlier the better.

Good Luck-

Meyer

[Guest guest]

your son sounds JUST LIKE MY DAUGHTER!!! she was dx'd with oral apraxia by dr

bruce cohen at the cleveland clinic. he looked at her MRI and said her brain

stem was not connecting with her muscles and that was what is causing her low

tone, speech issues, AND swallowing dysfunction....we actually start INTENSIVE

feeding therapy 3 times a week for 6 weeks starting on wed.....feel free to

email me privately if you would like. we see dr kenneth bock (in NY) and on

supplements, etc and have seen improvement with supplements..... kim

(kpdojonovic@...)

[Guest guest]

there's as long as I can remember a theory that all our children with

apraxia have a " brain stem signaling problem " and that is the root of the

problem- doesn't from my experience change the looking at the symptoms and

knowing what are the most appropriate therapies. So what is the list you have?

Let's put them down

1. Weakness in speech- I'm taking it you mean your child has a delay in speech

where you don't mean weakness as in dysarthria or low tone or hypotonia (well

even though that's possible too since there's hypotonia in the body -can be

dysarthria and apraxia combined)

Speech therapy to address the weakness in speech would mean diagnosis of what

exactly is causing the delay, motor planning, sensory, weakness etc- and

appropriate therapy for that or those diagnosis. Brain stem damage...even if

that's the reason....um what's the right speech therapy for that? What we've

all been doing because again all of our kids could have this to some effect.

2. Airflow...do you mean breath control? I just covered that apraxia in itself

can cover any area of the body or speech since it's neurologically based-

including breath control. Of course that can also have to do with hypotonia in

the truncal area which is crucial for breath control (which is the basis of

speech) So in fact air flow is a primary thing to work on. But what is the

cause and what is the right therapy for air flow? Well typically it would

depend but for sure oral motor therapies with horns etc. If you each hold a

horn and you do 3 short toots on the horn or whistle and your child can't

imitate those 3 little short toots back...then your child most likely does not

yet have the ability to do a 3 syllable word.

Brain stem damage? What's the therapy for airflow for that?

the ability to chew & swallow food...that's for sure eating and feeding or oral

motor therapy...I'd say oral motor therapy would probably be on the list of

appropriate therapies for your little one.

Brain stem damage? What's the therapy for feeding and swallowing issues for

that?

overall weakness is muscle tone/control & was given a diagnoses of cerebral

palsy

Typical...that's a soft sign the hypotonia. It's in most cases not profound

(which would be diagnosed at birth as say floppy baby) but typically a bit more

mild. CP wouldn't be overall weakness -it would be weakness or hypotonia in the

body and limbs with hypertonia in the extremities from what I recall...and I was

told not all MDs give the diagnosis of CP because it can upset parents and if

it's not severe- it's not progressive -so it is what it is. It's typically just

diagnosed as hypotonia or benign congenital hypotonia as we write about in The

Late Talker book. Any of us can go through life perfectly fine with mild

hypotonia...overall weakness. But you'll probably have to sit sooner, tire a

bit faster, lean more etc. For kids with verbal disabilities you want to know

if this " soft sign " is there so you can secure appropriate occupational therapy

to help strengthen the areas it affects (typically truncal area which is again

crucial for breath control which again ties in to number 2...not that number 2

-number 2 above...but many do have issues with constipation as well which may

also have to do with low tone and issues with pushing, or perhaps that's motor

planning -but I'm off on a tangent) OK so back to OT- probably in addition to

speech therapy that will be found to be appropriate for the hypotonia -perhaps

some PT as well but in most cases not at your child's age. Here's some symptoms

of soft signs

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

Brain stem damage? What's the therapy for hypotonia for that?

Two words is delayed in speech

http://www.cherab.org/information/latetalkerhandout.html but there are many

reasons why. Have you read The Late Talker book? If not you should because it

covers many of the issues.

About brain stem damage I'll give you a wise quote from a pediatric

gastroenterologist Dr. Lawrence said to me when I told him that was one of

the theories as to why kids with these issues get constipated " I can't do

anything about that...but I can tell you how to help with the constipation "

So that's the point of this email....and would I recommend fish oils and

NV....uh...YES are you kidding?!! Your child sounds like the garden variety

child in our group -multifaceted in presentation and we are seeing surges in

areas across the board http://pursuitofresearch.org/pursuit.html

But again the bottom line is that you need to look at the symptom and seek the

diagnosis that can provide your child with appropriate therapy. Brain stem

damage -unless I missed something -there is no known appropriate therapy for

that -but there is for each of the symptoms you listed.

Hope that helps- and on a last thought come to think of it...you probably need a

second opinion with a doctor that isn't so much of an alarmist. (just saying

even if she or he is right -what good did it do you or your child? And if the

answer is none...they why?)

=====

[Guest guest]

Thanks for all the info . My son's official diagnosis is hypo-tonic

cerebral palsy, he was the floppy baby at birth wasn't breathing & had a G-tube

placed in at 4 weeks because he could not swallow safely & actually spent 6

weeks in the NICU before coming home, so needless to say we know we were going

to have some challenges. He just started walking a couple of months ago!! He

is getting PT, OT, Speech & feeding therapies, but I have noticed not a lot of

attention has been put on oral motor, which is really what he needs. I am

currently looking for a new feeding therapist, so I will be sure & ask about an

oral motor program. Also what type of Fish oils are best for a kiddo like this

& how do you figure out the dosage? He is not on any supplements at the time.

Our neurologist had us try L-carnosine, but we have since stopped it since we

didn't see any improvement after 3 months of use. I have asked his doctor

about other supplements, but he has told me they are probably a waste of money,

which I find hard to believe after reading so many success stories.

Thanks for sharing all your knowledge,

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