Re: New here and feeling guilty

[Guest guest]

Hi Connie-

My daughter is 23 months old and nonverbal. Since Early intervention

couldn't diagnose her, we sought out a private SLP, who gave us a working

diagnosis

of Apraxia, and SI dysfunction. I can relate to your frustrations and guilt- I

too, had a traumatic pregnancy.

At 5 1/2 months into my pregnancy, we found out that my mom, age 56, had

breast cancer. I left my teaching position to help her through treatments.

Unfortunately, the cancer was very aggresive and 6 weeks later she passed away.

I

was devastated and lonely. My daughter was to be the first Grandchild for my

mom- it should have been a joyous occassion, and there I was, dealing with

loss, grief, and a new baby on the way. My OBGYN had me see a grief counselor

and

begin a cycle of antidepressants to head off anticipated post-partum

depression from my grief. My blood pressure started to get out of control, and

I had

to be induced four weeks early due to pre-eclampsia.

I too, have twinges of guilt, worrying if the stress I put my baby through

before she was born somehow caused her delays in development. But I feel so

blessed to have her in my life, and to be her Mom, and I can truly say, without

hesitation, that she has taught me more about life and about myself than

anyone else ever has. I now focus on trying to guide her, help her, teach her,

and

mostly, enjoy her as much as I possibly can.

My sister recently gave me a copy of this story, and I want to share it with

you. It has really given me new perspective.

Welcome to Holland by Perl Kingsley

I am often asked to describe the experience of raising a child with a

disability- to try to help people who have not shared that unique experience to

understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation

trip- to Italy. You buy a bunch of guide books and you make wonderful plans.

The

Coliseum. The angelo . The gondolas in Venice. You may learn

some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your

bags and off you go. Several hours later, the plane lands. The stewardess

comes in and says, " Welcome to Holland " .

" Holland?!? " you say. " What do you mean Holland?! " I signed up for Italy!

I'm supposed to be in Italy. All my life I've dreamed of going to Italy! "

But there's been a change of flight plan. They've landed in Holland and

there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting,

filthy place, full of pestilence, famine, and disease. It's just a different

place.

So you must go and buy new guide books. And you must learn a whole new

language. And you will meet a whol new group of people who you would never have

met.

It's just a different place. It's slower paced than Italy, less flashy than

Italy. But after you've been there for awhile and you catch your breath, you

look around... and you begin to notice that Holland has windmills...Holland

has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.. and they're all

bragging about what a wonderful time they had there. And for the rest of your

life, you will say, " Yes, that's where I was supposed to go. That's what I

had planned. "

And the pain of that will never, ever go away...becasue the loss of that

dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy,

you may never be free to enjoy the very special, the very lovely

things...about Holland.

Peace and best regards,

Beth

[Guest guest]

Hi Connie,

We all feel guilty at times -it's normal as a mom/dad to feel this way.

It's also normal to feel angry -or sad, or to even not want to

believe there is anything at all wrong. You'll probably want to

read the message that I just sent out (did you see that?) and seek a

second opinion from medical/speech/OT professionals outside of EI. EI is not in

many cases allowed to diagnose anyway.

About what causes a speech impairment:

Truth is that there are drug addicts who have perfectly healthy

babies and mom's who don't have any complications at all who eat

healthy and have no risks in the family who end up with a special

needs child.

I can tell you through this group that the biggest risk in

communication impairments appears to be where you live. The more

toxic exposures -the larger the risks. Also if communication

impairments run in the family -the larger the risks. No speech

disorders ran in our family -but out of my two -and my brother and

sister's kids -5 out of 6 have speech impairments of varying degrees.

Other than the more obvious odds I've just posted -we as a group so

far do not have any clear reasons as to what causes verbal disabilities. Some

have

perfect pregnancies -delivery -etc. and have a child with a speech impairment.

The good news since you are new to the group is we are finding

there can be great assets in learning in having a late talker child...if given

the

proper chances. So just keep reading and know that your child no

matter what -delay or disorder -has an awesome mom that loves him,

and he has so much hope in the future.

=====

[Guest guest]

Well, after all Connie, it isn't like you wanted to do all that

vomiting, or go into pre-eclampsia! You went through a very difficult

pregnancy bravely and you have no reason at all to blame yourself.

Peace,

Kathy E.

On Dec 19, 2003, at 9:07 PM, bruce_14727 wrote:

> Now about the guilty part. I had the most awful preganancy with my

> daughter. I had Severe HyperEmesis for the first 6 1/2 months. I

> threw up all the time and couldn't keep anything down.

[Guest guest]

Hi ,

My son is 2 1/2 also and we are experiencing about the same thing. Our EI

program can not give us any diagnosis expect severe verbal delay. His new speech

teacher seems to think it has to be some kind of apraxia. But then he will go

and do something and she will see this is so out of character for a child with

apraxia. We have been on the pro-efa supplements from Nordic Naturals for about

a month now . I have not seen any verbal surges but I have notice him making

various new consanants sound and jargoning more. I too was pretty sick during my

pregnancy. Luckily I did not have it as bad as you. But I had Morning sickness

from 16 weeks till while I was delivering At 40 weeks. I seem to be getting past

the guilt now I am reaching the frustration. I can see My little boy struggling

to talk and it just will not work for him. Lately He has been grinding his

teeth. His ST seem to think it is him trying to position his jaw to talk. She

does seem to have may suggestions. I too would love

any Input

Thanks again ,

Kim

bruce_14727 <bruce_14727@...> wrote:

Hi,

I am new to the group, and am learning all kinds of things. I have

a 2 1/2 yr. old daughter who has a severe speech delay.

Unfortunately, the speech therapists in the Early Intervention

Program she is involved with can't decide or agree on a diagnosis.

One speech teacher says she has a moderate to severe speech delay.

The other therapist says she shows distinct tendencies towrds verbal

apraxia. I have a cousin who's son has verbal apraxia. I am not

sure if it can be genetic, and neither are the speech therapists.

Now about the guilty part. I had the most awful preganancy with my

daughter. I had Severe HyperEmesis for the first 6 1/2 months. I

threw up all the time and couldn't keep anything down. I lost 25 lbs

in the first month of my pregnancy. It got so bad that I ended up

with an NG tube for feeding. Only problem was, when I threw up it

came out-needless to say, I had over two dozen of them put down.

They tried parenteral nutrition with an iv catheter, but couldnt keep

my blood sugar under control. I also took Zofran for an anti-

emetic. At the end of my pregnancy, I ended up with pre-eclampsia,

and my daughter was delivered (vaginally) 4 1/2 weeks early. Every

day, I ask myself if my pregnancy had something to do with her

inability to talk. You know, did she not get what she needed at the

most important times of growth in-utero? I feel terrible, and cry

just about everyday. It hurts so much to think that I could be the

reason.

Well thank you all for listening to me. And if anybody has the

answer or any thoughts on my situation I would be ever so grateful!!

Thanks again, and I look forward to meeting everyone and learning all

I can from you guys.

Sincerely,

Connie Studley

[Guest guest]

Another thing, dear young friend. If it is true that perhaps you

didn't have enough essential fatty acids during your pregnancy, what

you did have in your body went to your child, which means you had very

little if any left for yourself. They think now that this is a

possible cause of depression. Maybe you are blaming yourself because

you are depressed because *you* don't have enough essential fatty acids

for your own brain to work the way it should. There was just recently

an article on Medscape about essential fatty acids being used to treat

" refractory " depression--depression that wasn't helped by

antidepressants. I posted about it on this list, you should be able to

find it in the archives.

So if you decided to get some ProEFA for your child to help with her

speech, get some for yourself too. My DIL, who is the mother of my

grandson with speech delay, just started some recently, and it is

helping more than the antidepressants did.

Peace,

Kathy E.

On Dec 19, 2003, at 9:07 PM, bruce_14727 wrote:

> You know, did she not get what she needed at the

> most important times of growth in-utero? I feel terrible, and cry

> just about everyday. It hurts so much to think that I could be the

> reason.

[Guest guest]

Connie

Please don't blame yourself. Your pregnancy sounds much like my first

pregnancy...I was vomiting on the operating table during the emergency

c-section. I hurled for 9 months.....it was terrible. I, too, had pre

eclampsia, thus he was delivered at 37 weeks.....10 lbs, 13 ozs worth....he is

considered to be a " genius. "

I had a very normal pregnancy with my last.....who has oral and verbal apraxia.

No vomiting, no hbp....the most normal of the 3 pregnancies, and this child is

by far the most impaired. Go figure.

It's truly nothing you did, I look at it, that it is god's will. We can all

look at everything that happened and blame ourselves.....you did nothing

wrong......

Blessings to you and yours....

~Karyn

[ ] New here and feeling guilty

Now about the guilty part. I had the most awful preganancy with my

daughter. I had Severe HyperEmesis for the first 6 1/2 months. I

threw up all the time and couldn't keep anything down. I lost 25 lbs

in the first month of my pregnancy. It got so bad that I ended up

with an NG tube for feeding. Only problem was, when I threw up it

came out-needless to say, I had over two dozen of them put down.

They tried parenteral nutrition with an iv catheter, but couldnt keep

my blood sugar under control. I also took Zofran for an anti-

emetic. At the end of my pregnancy, I ended up with pre-eclampsia,

and my daughter was delivered (vaginally) 4 1/2 weeks early. Every

day, I ask myself if my pregnancy had something to do with her

inability to talk. You know, did she not get what she needed at the

most important times of growth in-utero? I feel terrible, and cry

just about everyday. It hurts so much to think that I could be the

reason.

[Guest guest]

Dear Kim and ,

Hi. My name is Anita and I joined this group about a month ago. I have a 23

month old son with oral and verbal apraxia. I just wanted to tell you that you

are going to love this group, both for their extraordindary insight and moral

support. I read all of the messages almost every night and I can't tell you how

much I have learned and how less isolated I feel (thank you so much, everyone!).

In case no one has told you about

[Guest guest]

Kathy,

You do raise a good point in helping all the moms that feel

depressed. And EFAs are proven to help in this area. I joke that

this must be the reason that you can stick a fish in a tiny little

bowl and they are just so happy -they are full of it!

A bunch of us had the honor to hear a roomful of respected MDs and

other researchers speak about this Kathy at the First Apraxia

Conference.

http://www.cherab.org/news/scientific.html

I highly recommend any of you that feel this way either go to the

library, bookstore Amazon and get The Omega 3 Connection written by

Stoll MD. Dr. Stoll had agreed to be an advisor to CHERAB,

but we kind of never worked together because his research focused on

pure Omega 3s -and we as a group found that not to be the answer for

our children -for some reason -our children require that small

amount of GLA (Omega 6 from primrose or borage seed oil) too. My

theory is this may be due to the very strong anti inflammatory

properties of the GLA which may enable the DHA to get to where it's

needed in the small vessels of the brain. In the research Dr. Stoll

did they used higher dosages of DHA. I predict that if they do a

study where they use an Omega 3 formula that also contains a small

amount of GLA -they won't require anywhere near as large a dosage as

they used to get the same effects. You watch. (I know because this

is what we found as a group)

It was actually Dr. andra J. , MA, DPhil who was the

one that raised awareness at our conference about the importance of

a higher EPA over the DHA. She told me that the UK was studying the

EFAs (or LCPs or PUFAs) 5 years longer than the US -and they found

that while we speak about the DHA here -they found the EPA to be

more important for some reason -which I have to say we anecdotally

found to be better too.

http://www.cherab.org/information/historyEFA.html

As Dr. Stordy author of " The LCP Solution: The Remarkable

Nutritional Treatment for ADHD, Dyslexia and Dysraxia " says " EFAs

are still a blunt tool " My son Tanner's story is the first story

under apraxia in the book -and up on the website

http://www.cherab.org/information/dietaryeffects/LCPbook.html The

LCP Solution is another wonderful book co authored by Malcolm

Nicholl, my co author of The Late Talker book -where we have an

entire chapter about EFAs too of course!

http://www.speech-express.com/late.talker.html

My background again is in toy design and animation -so I of course

had no prior knowledge or contacts in this area -at all! (and

Kathy let them know what I told you about them -and how much the

EFAs helped you after your husband and mother died and you still had

to raise all the boys -2 who are apraxic -and teach kindergarten!)

(and even if you are not depressed -try them anyway. You may find

you have a way better memory -let things bounce off you without

getting upset, and even get along better (fight less) with your

spouse -we all know special needs children can put stress on any

marriage. So if you are not allergic to fish -just try it and let

us know...Santa eats lots of EFAs at the North Pole " Ho Ho Ho " -really!)

Here is just one recent article that features interviews with Dr.

Joe Hibblen who is one of the key medical doctors leading the search

in this area (and one of the presenters at our conference)

" Now psychiatrists are also taking a closer look. Omega-3s, dubbed

the " happy " fats in some quarters, are under investigation for

treating depression, bipolar disease, attention-deficit

hyperactivity disorder, alcoholism, Alzheimer's disease and even the

so-called baby blues, or postpartum depression.

Earlier this year, the American Psychiatric Association formed a

committee to review the findings to make treatment recommendations

for the use of omega-3s.

What makes this emerging science particularly intriguing is that the

evidence for the fats' various benefits comes from several types of

research: population studies, clinical trials and basic

neurochemistry.

" Not only are the data consistent in those areas, but they are very

robust, " says ph R. Hibbeln, chief of the outpatient clinic at

the Laboratory of Membrane Biochemistry and Biophysics at the

National Institute of Alcohol Abuse and Alcoholism (NIAAA) in

Bethesda, Md.

And since there are few if any side effects to eating foods rich in

omega-3 fatty acids, there's little downside to investigating these

healthy fats - and a lot to be gained. Fish, and even fish oil

dietary supplements, are far cheaper than most prescription

medications. Plus, there's the hope that omega-3s may help bridge

the treatment gap in mental disorders - up to 30 percent of people

being treated for depression, for example, find drugs inadequate in

controlling their symptoms.

" The main problem we have with depression is that we do not have

treatment that (dependably) provides complete recovery, " says

Kupfer, head of psychiatry at the University of Pittsburgh's Western

Psychiatric Institute and Clinic.

The idea that omega-3 fatty acids might help treat mental disorders

dawned on Hibbeln in 1984 when he was standing in an anatomy lab. " I

had cut open the brain, and it just very much struck me that it is

mostly fat, " he says. " The biochemistry of fat and lipids just

seemed to be very unexplored in psychiatric disorders and that

seemed odd because there are many profound neurological disorders

that are known to be caused by lipid problems. "

It's well recognized, for example, that multiple sclerosis damages

the fatty myelin sheaths of nerve cells. Another neurological

disorder, Gaucher's disease, results from the buildup of harmful

fatty substances in cells, and a whole class of neurological

disorders called leukodystrophies are caused by flawed development

or maintenance of the fatty myelin in nerve cells.

The brain itself, is, in fact, about 60 percent fat, giving new

meaning to the term fathead. But unlike other adipose tissue

throughout the body, the brain's fat is diverse, " as diverse as

proteins in the body, " notes Hibbeln.

Essential fatty acids are fats that can't be produced by the body

but are required for good health. They play key roles in the

structure of brain cells and of the eye, particularly the retina.

They're vital for each neuron's membrane, both its outer protection

and its means of accessing key nutrients. And it is these essential

fats that regulate the growth of long tendrils called axons that

enable neurons to communicate with each other.

Oddly enough, while the body can manufacture saturated fat,

cholesterol and even some unsaturated fat - it is incapable of

producing two of the fatty acids that are most vital. One is an

omega-3 fatty acid called alpha linolenic acid, which is found in

fish, canola oil and flaxseed. The other is an omega-6 fatty acid

with the maddeningly similar name of linoleic acid, which is found

in soybean, safflower and corn oils, as well as in meat, poultry,

fish and such popular fare as processed foods.

Omega-3s and omega-6s are close enough in chemical structure to be

able to compete for the same molecular machinery that allows entry

into the brain. (Omega-3 fatty acid molecules have three carbon

atoms on one end; omega-6 fatty acids have six.)

That fact might simply still be a little quirk of nature had not a

huge shift occurred in diets during the past century. In 1909,

Americans got most of their fat from free-range animals, which have

higher levels of omega-3s than the chicken, beef and pork commonly

eaten today. They also consumed about 0.02 pounds per year of

soybean oil - - a number that increased gradually until about 1960,

when " soybean oil took over the U.S. food chain, " says

Lands, a retired biochemist with NIAAA.

By 1999, soybean oil - a major ingredient in crackers, bread, salad

dressings, baked goods and processed food of all sorts - accounted

for 20 percent of total calories consumed in the United States,

according to the U.S. Department of Agriculture. Per-capita

consumption reached 25 pounds per year. " That means that there has

been a 1,000-fold increase in (consumption of) omega-6 fatty acids "

over 100 years, Hibbeln says. " So we have literally changed the

composition of people's bodies and their brains.

" A very interesting question, which we don't know the answer to yet,

is to what degree the dietary change has changed overall behavior in

our society. "

Flooding brains and bodies with a diet rich in omega-6 fatty acids

theoretically could give an unfair advantage to these molecules,

allowing them to block omega-3s from getting inside cells and

replenishing stores in the brain and elsewhere in the body.

Intrigued by this possibility, Hibbeln charted fish consumption

worldwide and compared those figures to rates of depression. In a

paper published in 1998 in The Lancet, he showed that nations with

the highest fish consumption - Japan, Taiwan and Korea - also had

the lowest rates of depression.

Next, he took a look at homicide, suicide and aggression rates and

compared them to seafood consumption. Similar patterns emerged.

Since then, Hibbeln has examined patterns of postpartum depression,

which provides a particularly interesting window of opportunity for

studying the psychological aspects of omega-3 fatty acids. That's

because during pregnancy, mothers are the sole source of an omega-3

fatty acid known as docosahenaenoic acid (DHA) to the fetus. So key

is this substance to fetal brain development that the mother's

stores are depleted if she doesn't consume enough DHA in her diet.

In a 2002 study published in the Journal of Affective Disorders,

Hibbeln reported that " rates of postpartum depression are 50 times

higher in countries where women don't eat fish, " he says.

Of course, results from such population studies - known as

epidemiology - can at best show only associations and trends, not

cause and effect or a biological mechanism. To nail down any new

scientific theory requires both basic science and clinical trials. "

read entire article at

http://www.gomemphis.com/mca/health_and_fitness/article/0,1426,MCA_522_2468105,0\

0.html

=====

[Guest guest]

Beth--

The story that your sister forwarded to you is the BEST to explain

it. I plan to use this as an example to express to people why it's

different for us, having a kid with a disability, and why they should

just lay off, because I'm in a great place anyway! Thank you SO much

for sharing this!! This is really good.

le (mom to Drew 2.6, apraxia and DSI)

> Welcome to Holland by Perl Kingsley

>

> I am often asked to describe the experience of raising a child with

a

> disability- to try to help people who have not shared that unique

experience to

> understand it, to imagine how it would feel. It's like this...

>

> When you're going to have a baby, it's like planning a fabulous

vacation

> trip- to Italy. You buy a bunch of guide books and you make

wonderful plans. The

> Coliseum. The angelo . The gondolas in Venice. You

may learn

> some handy phrases in Italian. It's all very exciting.

>

> After months of eager anticipation, the day finally arrives. You

pack your

> bags and off you go. Several hours later, the plane lands. The

stewardess

> comes in and says, " Welcome to Holland " .

>

> " Holland?!? " you say. " What do you mean Holland?! " I signed up

for Italy!

> I'm supposed to be in Italy. All my life I've dreamed of going to

Italy! "

>

> But there's been a change of flight plan. They've landed in

Holland and

> there you must stay.

>

> The important thing is that they haven't taken you to a horrible,

disgusting,

> filthy place, full of pestilence, famine, and disease. It's just a

different

> place.

>

> So you must go and buy new guide books. And you must learn a whole

new

> language. And you will meet a whol new group of people who you

would never have

> met.

>

> It's just a different place. It's slower paced than Italy, less

flashy than

> Italy. But after you've been there for awhile and you catch your

breath, you

> look around... and you begin to notice that Holland has

windmills...Holland

> has tulips. Holland even has Rembrandts.

>

> But everyone you know is busy coming and going from Italy.. and

they're all

> bragging about what a wonderful time they had there. And for the

rest of your

> life, you will say, " Yes, that's where I was supposed to go.

That's what I

> had planned. "

>

> And the pain of that will never, ever go away...becasue the loss of

that

> dream is a very significant loss.

>

> But... if you spend your life mourning the fact that you didn't get

to Italy,

> you may never be free to enjoy the very special, the very lovely

> things...about Holland.

>

> Peace and best regards,

> Beth

[Guest guest]

Hi Kim!

The aspect of tooth grinding in your message caught my eye -and I

have two archives on that below. Sometimes what we view as a bad

thing could really be a good thing as we talked about with late teething.

(archive)

" I don't know exactly why your child is moving her mouth in unusual

positions, or groping -however to me any changes outside the norm

when you start your child on the EFAs is a great sign that something

is clicking and

that the surge may be soon approaching. (Please let us know when you

see the surge in speech in the next week or two!)

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs

from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe

it's just a coincidence " However after the second or third surge in

a short period of time -and then another - you are pretty sure

things

are different and it's at this point the professionals and the rest

of the family and your friends are noticing it too -maybe about two

to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no

longer feel as desperate and want to share this new information with

everyone and anyone. As the months go by and your child continues to

progress at a much more rapid rate -you may even start to doubt the

original diagnosis -especially if you started EFA supplementation at

two -and perhaps the SLP that diagnosed the apraxia who also was at

first excited is starting to second guess if the original diagnosis

was correct as well. Unless you have to stop the ProEFA (or other

Essential Fatty Acid) and literally have the chance to see the

regression of acquired speech and language skills, attempts, and

changes in behavior like we did with Tanner (and/or have a chance to

again witness the second surge when your child is put back on the

EFAs) -that doubt will probably remain somewhere in your mind and in

others around your child. So the " I told you that he would start

talking when he was ready " comments should be expected of course.

....The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is either...

....Here is what many of us have found to be the best plan

anecdotally...start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months. At this point we

raised the dosage to two capsules of ProEFA a day and once again had

those surges which lasted again for months. When we reached the

next plateau after around a year, instead of going to three a day -

we squeezed 1/2 to one capsule of ProEPA into the 2 capsules of

ProEFA and for almost all of us that try -that created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her. "

Let us know if you start having surges in the next few days! I

wouldn't be surprised. There are a few messages in the archives about

tooth grinding -here are just two:

From: " cailg547 " <aigjr@...>

Date: Fri Sep 13, 2002 11:37 am

Subject: brain & efa's!

My daughter had her second brain MRI yesterday. The first was when

she was 2 and 1/2 now she is 4 and 1/2. The first one showed that her

myelin needed to grow some more. We started supplementing with efa's

right after that first MRI. First efalex until she was 3 and then

proefa. We saw results with speech on the proefa and with the efelex

she stopped teeth grinding.

The MRI yesterday showed that her myelin is not only completely

developed but extremely so.

The myelin is the outer coating of brain cells and without it the

brain can't make connections within itself so that you can function.

People who have MS lose myelin.

This development was very important for my daughter because it was

also discovered what I had suspected, that she has some tiny spots is

considered brain damage probably caused by lack of oxygen while she

was in the birth canal too long (over 4 hours).

It was explained to me that without the myelin the brain would not be

able to find alternative routes to learn to do what that spot would

have been responsible for.

The pediatric radiologist said that they believe that most people

stop producing myelin at age 3-3 1/2 but with efa's myelin can keep

being produced!

Carolyn aigjr@...

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

From: "

[Guest guest]

Hi Connie, I'm relatively new here too and grateful to have found this group.

I'm a grandma, whose 26 mos. old grandson has been diagnosed with verbal

apraxia. I moved to NY from Maine after he was born, to be near him and his

parents, and now I know I'd move heaven and earth if I could help more.

He's so smart and so dear, but definitely a little man of few words.

We can't do anything about yesterdays, and who knows what tomorrow will

bring. But today, we're doing all that we can. Speech threapy thrice a week,

and the FISH OIL, Pro-EFA from Nordic Naturals. (Of course, lots of love,

acceptance, and support!) We haven't seen the dramatic speech " surge " that

I've seen reported, but there has been progress since we started on Nov. 24.

My daughter takes it too; so do I. We have a new 3 mos. old baby girl now,

who is nursing. For me, I'm hoping it will postpone creeping senility !

All the best to you and your family. Pat

> Hi,

> I am new to the group, and am learning all kinds of things. I have

> a 2 1/2 yr. old daughter who has a severe speech delay.

> Unfortunately, the speech therapists in the Early Intervention

> Program she is involved with can't decide or agree on a diagnosis.

> One speech teacher says she has a moderate to severe speech delay.

> The other therapist says she shows distinct tendencies towrds verbal

> apraxia. I have a cousin who's son has verbal apraxia. I am not

> sure if it can be genetic, and neither are the speech therapists.

>

> Now about the guilty part. I had the most awful preganancy with my

> daughter. I had Severe HyperEmesis for the first 6 1/2 months. I

> threw up all the time and couldn't keep anything down. I lost 25 lbs

> in the first month of my pregnancy. It got so bad that I ended up

> with an NG tube for feeding. Only problem was, when I threw up it

> came out-needless to say, I had over two dozen of them put down.

> They tried parenteral nutrition with an iv catheter, but couldnt keep

> my blood sugar under control. I also took Zofran for an anti-

> emetic. At the end of my pregnancy, I ended up with pre-eclampsia,

> and my daughter was delivered (vaginally) 4 1/2 weeks early. Every

> day, I ask myself if my pregnancy had something to do with her

> inability to talk. You know, did she not get what she needed at the

> most important times of growth in-utero? I feel terrible, and cry

> just about everyday. It hurts so much to think that I could be the

> reason.

>

> Well thank you all for listening to me. And if anybody has the

> answer or any thoughts on my situation I would be ever so grateful!!

> Thanks again, and I look forward to meeting everyone and learning all

> I can from you guys.

> Sincerely,

> Connie Studley

[Guest guest]

Hi. I had hyperemesis with all 3 of my pregnancies, but the worst with my

third (who was a girl when the other 2 were boys). I was on Zofran during my

third pregnancy as an anti-emetic also. I've never met anyone till now who also

took Zofran for nausea during pregnancy (it's usually used for chemo

patients). Nowhere near as bad as you (no tube or anything!), but quite sick

obviously for my doctor to give me Zofran (they tried rehydrating me

intravenously but

that didn't work as I'd go home and be sick constantly anyway).

BUT - this pregnancy did NOT produce my apraxic child. My daughter just has

a mild phono delay (speech delays run in my family). My middle child has

apraxia, and his was my EASIEST pregnancy as far as nausea and vomiting goes.

Just thought it might ease your mind to hear about my experience. hope it

helps a bit!

Sandy, Illinois (alpy2@...)

Volunteer Co-Webmaster, www.ourchildrenleftbehind.com (IDEA reauthorization)

[Guest guest]

Hello Connie

Welcome to the group. I think the guilt thing is normal for us moms at some

point. I use to feel guilty because came almost 4 weeks early. I was

suppose to be on bedrest but with a 2 year old in the house & a husband that

worked out of town just couldn't be. Was that the reason?? If it is any

help, is apraxic & I probably only vomited a handful of times. I am

really lucky!! I didn't gain very much weight with him something like 17 or

19 lbs. Try hard to focus on the future & finding what works for your

daughter now. Believe me that is a full time job!! If you go back through

the archives, there is no real one thing that seems to be the why are kids

are this way. All the questions have been asked who had the Rogram, who had

big babies, small babies, who had babies that were jaundice who had what.

And the end answer seems to be all over the place?? Will we ever know,

maybe not. But what we do know as a group is that the proper speech

therapy, Pro EFA's, and sometimes OT seem to work. Some of us see

improvements in our children after days at a amusement park, for us it is

the water slides at Disney World. You will find what seems to work for your

daughter, just start looking. Have a wonderful holiday...

Tammy I. in FL mom to 5 apraxic, 7, 19 & 22

From: " bruce_14727 " <bruce_14727@...>

Reply-

Subject: [ ] New here and feeling guilty

Date: Sat, 20 Dec 2003 02:07:46 -0000

_________________________________________________________________

It’s our best dial-up Internet access offer: 6 months @$9.95/month. Get it

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[Guest guest]

Hi Connie,

My son is 22 months and has verbal apraxia. I had such severe hyperemesis

during my pregnancy that it almost killed us both. Compazine, reglan, zofran,

tigan, kytril..those are just the ones I remember. 11 hospitalizations and

visiting nurses when i was allowed home, 24 hour IV, TPN for a short time, PIC

line at 9 weeks, Septic at 14 weeks-fungal blood infection-almost didn't make

it. I was given a " choice " take amphotericin- a terrible antifungal drug, and

recover, but they weren't sure what would happen to the baby... OR... don't take

it, and maybe I would live but would at the LEAST end up blind, and the baby

would die. I had 2 little ones at home- it was terrible- I took it. Then the

medicine almost killed me too! Won't go into it anymore- you get the picture.

The reason I am sharing this is because I had anxiety and guilt from 14 weeks.

I was waiting for the proverbial shoe from that moment on. CJ is my third, and

I had hyperemisis with my first two- each worse than

the one before. I cannot have anymore- I wouldn't make it. The docs were

talking to me about " fixing " things at 14 weeks so that we didn't have anymore.

You would likely not have made it through with out the meds and tpn. I know how

horrible it was- i lived it three times. I wasn't sure I was going to make it

this last time. Don't blame yourself, you are absolutely blessed with this gift

from heaven, who wouldn't be here at all if you hadn't taken the meds. My heart

was broken at the thought that I may have done this, until a friend set me

straight and reminded me that CJ almost didn't make it here at all. Now I am

funneling all of my energy into getting him the best possible help that I can,

and doing everything I can to give him everything he needs to overcome.

I hope this helps, feel free to email me privately, and best wishes to you.

Regards,

in PA - mom to CJ the miracle baby

bruce_14727 <bruce_14727@...> wrote:

Hi,

I am new to the group, and am learning all kinds of things. I have

a 2 1/2 yr. old daughter who has a severe speech delay.

Unfortunately, the speech therapists in the Early Intervention

Program she is involved with can't decide or agree on a diagnosis.

One speech teacher says she has a moderate to severe speech delay.

The other therapist says she shows distinct tendencies towrds verbal

apraxia. I have a cousin who's son has verbal apraxia. I am not

sure if it can be genetic, and neither are the speech therapists.

Now about the guilty part. I had the most awful preganancy with my

daughter. I had Severe HyperEmesis for the first 6 1/2 months. I

threw up all the time and couldn't keep anything down. I lost 25 lbs

in the first month of my pregnancy. It got so bad that I ended up

with an NG tube for feeding. Only problem was, when I threw up it

came out-needless to say, I had over two dozen of them put down.

They tried parenteral nutrition with an iv catheter, but couldnt keep

my blood sugar under control. I also took Zofran for an anti-

emetic. At the end of my pregnancy, I ended up with pre-eclampsia,

and my daughter was delivered (vaginally) 4 1/2 weeks early. Every

day, I ask myself if my pregnancy had something to do with her

inability to talk. You know, did she not get what she needed at the

most important times of growth in-utero? I feel terrible, and cry

just about everyday. It hurts so much to think that I could be the

reason.

Well thank you all for listening to me. And if anybody has the

answer or any thoughts on my situation I would be ever so grateful!!

Thanks again, and I look forward to meeting everyone and learning all

I can from you guys.

Sincerely,

Connie Studley

[Guest guest]

Hi Connie,

you have received so many peices of good advice I feel mine is almost

superfluous but here goes.

What happened to you was not your choice so you have no logical

reason to feel guilty. I suspect your head knows this very well but

it is your heart that is the problem.

I did choose the course of action that caused Charlies autism so I

know a bit about guilt....

here is what I know......

It hurts your child.It drags the sadness in your soul into your

thought and into your heart and into your eyes. She will know.

Your little one needs a mother with a heart full of hope and love.

Your child deserves nothing less.

In the months that I spent every waking moment wishing that I were

dead just so this pain and grief would stop I was giving my wonderful

son less than he deserved. Somewhere, on a level that I was not truly

aware of at the time, I think he felt my greif and I feel ashamed

that maybe he felt he was the cause of all that misery and sadness.

How could I do that to him? I certainly was not a good mother to my

older son. We talked about this recently and I apologised for how I

had emotionally abandoned him just as he needed me. He said it was OK

because he knew I was doing my best. I have had to let that guilt go

along with all the rest. I am less of a mother to him when I allow it

to consume me.

Not in a million years do I think that you have any reason to feel

guilty about what happened. But please, please do not look back in

three years time and have to feel sad that your spirit was negative .

That your child was fighting so hard in a home that had grief at its

core. Or that she was the reason that you were crying every day.

I am sure that you are a great mum and that your tears are private.

But I KNOW that so much of Charlies healing has come from hope , from

a house filled with joy and love and the promise of tomorrow.

It is easy to be that positive person when you have the perfect

family. What courage, what a gift to those you love to find that joy

in the face of a child, the spirit of a child who has to reach to be

accepted. It IS hard - the hardest thing i have ever done. But by

forgiving myself i let my sons beauty shine.

I know that you can't do it for you, i couldn't. but you know you can

do this for your daughter. use the new year - paint a new picture for

her.

best wishes

Deborah