Diagnosis made - need support

January 5, 2004

Why is it that even though I have " known " that my sweet, beautiful

son probably had apraxia I still thought I would be sick to my

stomach when the neurologist called tonight and said - " Apraxia of

speech " ? She told me that she saw no seizures on his EEG but that

it was " immature " - that of a younger child. When I asked if that

was the cause of the speech problem she said there is " developmental

apraxia " but she thought Nick was more " apraxia of speech " . Now I

have searched the internet for hours trying to understand what

this " immature EEG " means and I'm not finding anything that makes

much sense. Interestingly I did find a study that found that

mothers supplemented with DHA during pregnany affected the child's

maturity of the EEG.

Now I've sat in the bathroom sobbing while my husband played with

Nick, all the while his not understanding because as he said, " We've

known this, what did you expect her to say? " I guess hope springs

eternal plus now I'm worried about this EEG finding. Of course when

I fired questions at her she said that we needed to come in for a

follow up appointment. That we could discuss what course we should

go and to answer more of my questions. It took more than a month to

get an appointment before, I can't stand the thought of wondering

about this for another month!

Does anyone know what this EEG finding really represents? I know

that it does not show intelligence but what of the brain waves being

imature, how does that affect him and should I do something

to " help " him mature?

My stress level is over the top right now so I apologize if this

post is incoherent. I know I need to pull myself together to be

there for Nick but right now I'm wallowing and feel as though I

can't do this. I can't even imagine what kind of wreck I would be

if the diagnosis was worse! And I do know there is much worse out

there than apraxia, I just feel more saddness than I have ever

experienced in my entire life. He is so unbelievably precious to

me, I can't stand the thought of him thinking that he is anything

but an amazing, incredibly wonderful human being. I also can't seem

to stop blaiming myself, that it was something I did or didn't do.

Damn, this grief process bites.

Do me a favor and hug your beautiful children and have them hug you

for me. That will be my thank you for your listening and " being

there " during my emotional tirade.

Blessings,

- SAHM to 32 months and now diagnosed as verbally

apraxic.

January 5, 2004

Hi ,

Take a deep breath ...a hot bath...then put on some comfy PJs -drink

some hot chocolate and then get some sleep. It's OK to cry, it's OK

to ignore the diagnosis and laugh. No matter what your son is still

your " sweet, beautiful son " -and he is very lucky he has you for his

mommy. I can tell that you are the type that searches and will do

everything to give him the best chance possible!

You don't have to accept one diagnosis as fact just yet even if you

in your heart believe it to be true. You can seek a second

opinion. Also you can focus on things your child loves to do and is

good at which will make both you and him feel better. You can find

others to get together with in your area for local support (where

are you?)

Not all that have an apraxic/communication impaired child have any

hard signs that will show on an EEG or MRI -and there is no way of

knowing yet the difference between what used to be called

developmental apraxia of speech and just calling it apraxia of

speech -there is a bit of confusion right now even among the MDs -

and I'm sure down the road it will be figured out. I know in

speaking with Nolan Altman MD of Children's Hospital of Miami -the

tests they have today just keep getting better and better to show

incredible details of the brain. Dr. Altman is the MD behind the

study on right brain dominance in late talker children

http://news.bbc.co.uk/1/hi/health/3233762.stm and expressed interest

to me, Dr. Jackie Stordy, and Dr. Marilyn Agin last we were all

together. (only problem is if we do this in Florida -we need a

group of children with apraxia in Florida who have not ever been

supplemented with EFAs....and even finding a group here isn't easy

no less never supplemented with EFAs! Maybe Dr. Nolan can fly into

NJ?)

There is much hope that we will have answers on more ways to help

our children going ahead...and again I just know that EFAs will be a

large part of the answer.

For now -we do post here many success stories for children who

receive early and intensive appropriate speech and multisensory

therapies (and EFAs)

So after all this about EFAs and speech -funny enough I did a quick

search on " immature EEG " and found: 'No differences in EEG scores

or Fagan scores were found, but neonates with mature EEG (N = 70)

had a higher concentration of DHA in umbilical plasma phospholipids

than neonates with immature EEG (N = 51) on the second day of life. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

1694666 & dopt=Abstract

The conclusion " This study shows neither harmful nor beneficial

effects of maternal supplementation of long-chain n-3 PUFAs

regarding pregnancy outcome, cognitive development, or growth, as

compared with supplementation with n-6 fatty acids. However, it

confirms that DHA concentration may be related to gestational length

and cerebral maturation of the newborn. "

(again when will they learn they can do a study and actually mix the

two together -then get back to us when you get those findings which

we already know what they will be!)

And for the MRI. One of the parents of a patient of pediatric neurologist's Xue

Ming

MD PhD out of UMDNJ posted here about her daughter's delayed myelin

which showed on an MRI which improved remarkably once on ProEFA. What was

interesting is that Dr. Ming said

that even those unlike her daughter who have instead subtle delayed myelin that

doesn't show up on the

MRI -they are finding at UMDNJ that in children with autism and

apraxia most have this subtle delayed myelin showing up in the lab. Dr. Ming is

one of the MDs I spoke to when I was asked to do a presentation for

the neurodevelopemental department at UMDNJ after I posted my theory

(that ended up being right) about myelin and EFAs here.

Even in cases where the diagnosis is severe -there is always great hope. I can

tell you that for a fact.

=====

January 5, 2004

sarah,

I so know where you have been. I have known that Austin has had Apraxia for a

couple of years now but sometimes I just have to let it all out all over again.

It is a long road for me and very difficult too. I know how you feel. Anytime

you feel crazy and you need to vent that is what we are all here for is to be

there for eachother. No one can understand really what you are going through

except for all of us in this group. I want you to know though in the two years

that I have known Austin has went to one year of therapy and there has been

progress. Not a lot but a little bit. I just want it all to happen all at

once. But it is a very slow process. We are all here for you anytime you need

to talk o.k.? You can also email me seperatley off of the group if you ever

need to vent.

Hope you and your family are doing o.k.--

Vicki Whitsitt, mother of Austin who is 5 and has verbal and oral apraxia and

SI, asthma too..

> Why is it that even though I have " known " that my sweet, beautiful

> son probably had apraxia I still thought I would be sick to my

> stomach when the neurologist called tonight and said - " Apraxia of

> speech " ? She told me that she saw no seizures on his EEG but that

> it was " immature " - that of a younger child. When I asked if that

> was the cause of the speech problem she said there is " developmental

> apraxia " but she thought Nick was more " apraxia of speech " . Now I

> have searched the internet for hours trying to understand what

> this " immature EEG " means and I'm not finding anything that makes

> much sense. Interestingly I did find a study that found that

> mothers supplemented with DHA during pregnany affected the child's

> maturity of the EEG.

>

> Now I've sat in the bathroom sobbing while my husband played with

> Nick, all the while his not understanding because as he said, " We've

> known this, what did you expect her to say? " I guess hope springs

> eternal plus now I'm worried about this EEG finding. Of course when

> I fired questions at her she said that we needed to come in for a

> follow up appointment. That we could discuss what course we should

> go and to answer more of my questions. It took more than a month to

> get an appointment before, I can't stand the thought of wondering

> about this for another month!

>

> Does anyone know what this EEG finding really represents? I know

> that it does not show intelligence but what of the brain waves being

> imature, how does that affect him and should I do something

> to " help " him mature?

>

> My stress level is over the top right now so I apologize if this

> post is incoherent. I know I need to pull myself together to be

> there for Nick but right now I'm wallowing and feel as though I

> can't do this. I can't even imagine what kind of wreck I would be

> if the diagnosis was worse! And I do know there is much worse out

> there than apraxia, I just feel more saddness than I have ever

> experienced in my entire life. He is so unbelievably precious to

> me, I can't stand the thought of him thinking that he is anything

> but an amazing, incredibly wonderful human being. I also can't seem

> to stop blaiming myself, that it was something I did or didn't do.

> Damn, this grief process bites.

>

> Do me a favor and hug your beautiful children and have them hug you

> for me. That will be my thank you for your listening and " being

> there " during my emotional tirade.

> Blessings,

> - SAHM to 32 months and now diagnosed as verbally

> apraxic.

January 6, 2004

......

It will be okay....

Apraxia is good news. I don't need to tell you that this could be MUCH worse.

We're all behind you, and you and are in our prayers.

~Karyn

[ ] Diagnosis made - need support