what to do

[Guest guest]

Sorry,

I didn't get to finish my post before.

Anyway, I was talking about dinner....I make hamburgers or steak or stir fry or lasagna, etc. I try to cook large quantities and then freeze the leftovers so I have food when I'm on the run.

For snacks, I eat popcorn, tostitos, corn chips, etc.

I tend to eat the same foods because they are the ones I like and can live with. I'll probably develop more food allergies to them, but I'll deal with that when it happens.

~

In a message dated 3/9/01 3:41:31 PM Central Standard Time, AnglGodes1 writes:

,

I went through this feeling of being weak and low blood sugars, etc. when I went/go through die-off. The first few times I was on the diet it was so bad I felt like I was going to pass out. It didn't let up for weeks.

Every time, I went off the diet because of that feeling. This time (I started the diet the last time in mid December), I am doing the diet alone for nearly 12 weeks without supplements. The die-off was slow and steady, but not intolerable. I understand what you're going through. I have two jobs and am a single mother. I don't have the time to feel sick and weak.

That's why I'm doing this slow. I will start supplements this week, but I am doing those slow, too. I don't care if it takes me 3 years to get through the program and kill off the yeast before I can have sugar again.

Some people want to do it in 3 months and they experience die-off that is nearly intolerable. The faster you do the diet and supplements, the stronger the die-off. You need to decide how fast is too fast for your body.

As far as what I eat? When I want something sweet, I eat fruit...and a lot of it. Fruit does not bother me at all. I have a recipe for a quinoa-applesauce bread that is pretty good. I eat wheat and potatoes, too (in limited amounts). So, sometimes for lunch I have a huge salad and fruit. Other times, I eat a bowl of chili. When I need something fast, I go through Mc's or 's drive-thru and order the grilled chicken sandwich. I scrape off the sauce and throw away the bread and just eat the chicken...and I eat the french fries...lots of them...LOL. For dinner, I usually make hamburgers.

~

[Guest guest]

In a message dated 10/21/2002 7:00:36 AM Eastern Daylight Time,

cynthia.kinsella@... writes:

> hard to give up as is the Salada w milk

> and sugar LOL I know they have to go too

Hi ,

Try using green tea with stevia in it. The green tea has caffiene so you

won't miss that and the Stevia makes it sweet. Takes a while to get used to

but is an alternative.

Sharon (Ontario) Canada

[Guest guest]

From: " mapleone1 " <cynthia.kinsella@...>

Sent: Monday, October 21, 2002 5:59 AM

Subject: What To Do

> Hi everyone I have decided to start this ER4YT diet the first

> immediate problem that I can forsee is giving up coffee / tea

> actually the coffee isn't as hard to give up as is the Salada w milk

> and sugar LOL I know they have to go too , There is a coffee I

> believe its called mellow roast made with chicory would that be ok to

> drink in the morning ? I think once I get past the morning especially

> the winter I will be OK

>

> Thanks

>

Hi ,

Welcome to the group and feel free to continue asking any questions you

have. Usually someone can answer pretty quick. Sometimes it takes a few

days, but usually we aren't that slow.

It will be easier on you to do as Dr. D'Adamo suggested in his book Eat

Right, to drop the avoids you are always eating 1 or 2 at a time so your

body won't have any bad reactions while it is cleaning itself out. You can

also not have that caffeine withdrawal head ache if you cut down on the

amount of coffee and tea you drink slowly, taking about a week to get all

the way off of it. many people don't have the patience to deal with this and

just jump in so just give the diet a while before you make up your mind

about it.

I'd be sure that the mellow roast has no coffee in it. The chicory is fine.

In fact it is a beneficial. Wish we could get it here in SE Oklahoma. For

the tea, many people substitute green tea. Also Roiboos, Ginger and other

caffeine free teas that are beneficial or neutral are good substitutes.

Keep in touch and let us know how you are doing.

[Guest guest]

Try green tea.

> Hi everyone I have decided to start this ER4YT diet the first

> immediate problem that I can forsee is giving up coffee / tea

> actually the coffee isn't as hard to give up as is the Salada w

milk

> and sugar LOL I know they have to go too , There is a coffee I

> believe its called mellow roast made with chicory would that be ok

to

> drink in the morning ? I think once I get past the morning

especially

> the winter I will be OK

>

> Thanks

>

[Guest guest]

In a message dated 10/21/2002 6:53:28 PM Eastern Daylight Time,

dwaldman@... writes:

<< One that's ok for all is called " Raja's Cup " and it's available in most

health food stores. >>

Sounds interesting. Is this a tea, coffee, or what?

[Guest guest]

There are several coffee substitutes out there, but most of them don't work

for non-secretors (which is what I am).

One that's ok for all is called " Raja's Cup " and it's available in most

health food stores. You need to get the can and brew it like you would

coffee - I find the tea bags just don't do the trick.

Here's a link to show you what it is and what it looks like - I am not

endorsing the website nor have I checked to see if these people have a good

price: http://www.herbtrader.com/201433.html

Good luck!

Dianne in L.A.

O+ non-secretor

[Guest guest]

Darrell:

Hi! I am sorry to hear you are having seizures in your sleep. I

have one question for you. Do you snore? My epitologist has found that

people that snore have serious cases of sleep aphena which causes you to get

less oxygen to the brain which can cause seizures during your sleep. The

reason I know this is because after having epilepsy for 40 years now, I went

through an extensive sleep study program and they found I have several

seizures in my sleep as well as my oxygen level goes below 70% while I am

asleep. I have another test on the 25th for futher studies. You may want to

ask a epitologist about this fact.

Please feel free to email or IM me any time. We are all brothers and

sisters in here and were here to help and support each other.

[Guest guest]

thanks sooo much for your response.It means a lot today especially

since I feel like crying. But I am going to try and find and epitologist and

try and do some kind of sleep study. I don't snore regularly but I do find

myself catching my breath occasionally. As if I missed my breath or maybe

even stopped breathing for a second. I looked under the term epitologist but

could not find any listed. I do not have a neurologist as I have stopped

seeing any since initially they could not offer a explanation except

medication.And I just feel lost and alone except for the love of my family.

But I mean medically.It seems most people are trying to get off the meds and

if Iam already off then is that good . But then the seizures are still here

so then what. Hey do u take medicine and if u do what kind and what

kind of effects does it have on you.And what IM do u use .

Re: [ ] what to do

> Darrell:

> Hi! I am sorry to hear you are having seizures in your sleep.

I

> have one question for you. Do you snore? My epitologist has found that

> people that snore have serious cases of sleep aphena which causes you to

get

> less oxygen to the brain which can cause seizures during your sleep. The

> reason I know this is because after having epilepsy for 40 years now, I

went

> through an extensive sleep study program and they found I have several

> seizures in my sleep as well as my oxygen level goes below 70% while I am

> asleep. I have another test on the 25th for futher studies. You may want

to

> ask a epitologist about this fact.

> Please feel free to email or IM me any time. We are all brothers and

> sisters in here and were here to help and support each other.

>

>

>

>

>

[Guest guest]

This is to everyone here and my first post. Well I have been having seizures

now for 5 years mostly in my sleep. I have been afraid to take the meds and

have been trying to cope with it holistically with some good results

although I am still having gran mal seizures in my sleep. Point in case I

had 2 last night. Although small I still had them. And I just want to know

becuse I am considering taking something to end this madness. But what I

want to know is how some of you feel taking the meds. emotionally and

physcially. Is it worth it.or do I just try and live with them.

Darrell

[ ] what to do

> Okay guys and girls sitting here with no clue what to do about these

seizures. Had two gran mal last night in my sleep. The first lasting only

about 30 seconds my wife told me and then I went back to bed and had another

later on in the morning that lasted about 15 seconds. Not a lot of confusion

but I still had them. they seem to come every 20 or 30 days. I am sore and

my tongue is sore I have been taking good care of myself exercise and

eating. Juicing well and meditating,but still they are here.I mean do I live

like this or do I try and take some meds to end this nightmare. Please help

me with some sound advice. Is the medication that traumatic or is it worth

it to stop these seizures. I am sooo afraid that it will affect my working,

although I have been living with the seizures for 5 years now.Like I said

most of them come in my sleep. That is where they started in my sleep.So

please help.

> Darrell

>

>

[Guest guest]

darrell,

iam not a dr but to me it sounds like it's time to get to see someone you

can talk to,i know i had to,let me share with you,my 9 year old has

epilepsy and there is no worse feeling than watching your child be sick and

can do nothing and it's my job to make sure she is safe but how do i do

that in this case ,and there are people you can talk to and they can change

your meds till you understand.

i hope this helps and to send you a big hug

glenda

write my home address if you would like to chat away from the group

chippy@...

[ ] what to do

>

>

> > Okay guys and girls sitting here with no clue what to do about these

> seizures. Had two gran mal last night in my sleep. The first lasting only

> about 30 seconds my wife told me and then I went back to bed and had

another

> later on in the morning that lasted about 15 seconds. Not a lot of

confusion

> but I still had them. they seem to come every 20 or 30 days. I am sore and

> my tongue is sore I have been taking good care of myself exercise and

> eating. Juicing well and meditating,but still they are here.I mean do I

live

> like this or do I try and take some meds to end this nightmare. Please

help

> me with some sound advice. Is the medication that traumatic or is it worth

> it to stop these seizures. I am sooo afraid that it will affect my

working,

> although I have been living with the seizures for 5 years now.Like I said

> most of them come in my sleep. That is where they started in my sleep.So

> please help.

> > Darrell

> >

> >

[Guest guest]

Darrell:

Hi! How are you doing? It is always good to hear from you. I

have always called people with epilepsy my brothers and sisters for we all

share something in common even though the side effects or symptoms may be a

little different, we all still remain to be an Epilepsy Family.

I do talk Trileptal and Keppra from my seizures and Lorazepam for my

nerves. The only side effects I am having now is when the keppra begins to

wear off before another dose my left hand gets numb. That also is a side

effect from the brain surgery I had 7 years ago.

Please, get you either an neurologist or epitologist. You can get help

finding the epitologist by just calling your local hospital and they will

give you the name of one closest to you. You may have to be on medication

until you get great control and slowly weaned away from it. A neurologist

does not specialize in seizures alone. My neurologist works together with my

epitologist and they came to the conclusion of trying the sleep study

program. I am willing to do anything they can think of if they think it will

help.

I hope you are feeling well today. My screen name for is

julie4212262@ and you can IM me anytime on AOL with my screen name of

42122. It has been a pleasure talking to you. Keep in touch.

[Guest guest]

Darrell:

Hi! I wanted to let you know that I bet you feel like a time bomb

waiting to go because of the unexpected seizures just popping up without a

moments notice. I know I do. You are afraid to plan anything ahead because

you dont know if it will be the day you have a seizure and would have to

cancel. I have lived with this fear for 38 years now and i know excactely

how you feel.

Yes, please do keep in touch and i will be saying a prayer for you. Not

knowing anything is a grat risk of causing a seizure than knowing what is

going on because you can then maybe build some type of life.

Take care. I am here for ya. Just email or IM me.

[Guest guest]

Thank you sooo much for the kind words . Let me tell u. Even with the

love of my family I feel scared as hell. I have been dealing with this for 5

years u would think I would have the hang of this. Well I go a while without

any seizure activity and then bam here it comes. But tomorrow I am calling

the Barrow institute for some help on finding a epitologist. And to do a

sleep study.I feel good today except I know my brain is on fire on the

inside. Ya know. It just feels as if I am on that threshold. And it would be

so bad but the activity makes me feel anxious and scared.So I have to deal

with it ya know. Thanks again for the kind words and I will let u know about

the doctor

Darrell

Re: [ ] what to do

> Darrell:

> Hi! How are you doing? It is always good to hear from you. I

> have always called people with epilepsy my brothers and sisters for we all

> share something in common even though the side effects or symptoms may be

a

> little different, we all still remain to be an Epilepsy Family.

> I do talk Trileptal and Keppra from my seizures and Lorazepam for my

> nerves. The only side effects I am having now is when the keppra begins

to

> wear off before another dose my left hand gets numb. That also is a side

> effect from the brain surgery I had 7 years ago.

> Please, get you either an neurologist or epitologist. You can get help

> finding the epitologist by just calling your local hospital and they will

> give you the name of one closest to you. You may have to be on medication

> until you get great control and slowly weaned away from it. A neurologist

> does not specialize in seizures alone. My neurologist works together with

my

> epitologist and they came to the conclusion of trying the sleep study

> program. I am willing to do anything they can think of if they think it

will

> help.

> I hope you are feeling well today. My screen name for is

> julie4212262@ and you can IM me anytime on AOL with my screen name of

> 42122. It has been a pleasure talking to you. Keep in touch.

>

>

>

>

>

[Guest guest]

In einer eMail vom 14.04.03 04:54:53 (MEZ) - Mitteleurop. Sommerzeit schreibt

dmccall3@...:

> help on finding a epitologist

>

>

<A HREF= " http://w3.uokhsc.edu/neuro/division/cope/tologist.htm " >What is an

EPILEPTOLOGIST</A>

.... Finally, the highest level of expertise is the Epileptologist. ...

However, if a patient

doesn't think he or she is getting what is listed in the epilepsy BILL OF ...

w3.uokhsc.edu/neuro/division/cope/tologist.htm - 7k - <A

HREF= " http://216.239.51.100/search?q=cache:d0eoyGgINNQC:w3.uokhsc.edu/neuro/divi\

sion/cope/tologist.htm+epileptologist%2Blisted & hl=en & ie=UTF-8 " >Cached</A> - <A

HREF= " http://www.google.com/search?hl=en & lr= & cr= & ie=UTF-8 & q=related:w3.uokhsc.ed\

u/neuro/division/cope/tologist.htm " >Similar pages</A>

[Guest guest]

DARRELL;

THE PEOPLE ON THIS LIST ARE GREAT THEY HAVE WELCOMED ME

WITH OPEN ARMS AND TALKED TO ME AND MADE ME UNDERSTAND OR TOLD ME WHERE ON

THE WEB I COULD GO AND ONE GUY ON HERE EVEN TOLD ME WHERE TO GO (HAHAHAHA),I

HOPE EVERYTHING TURNS OUR OKAY AT THE DR,ON MESSENGER I GO BY

CHIPPY_TRASHMAN2(IN SMALL LETTERS).

HAVE A GREAT NITE

GLENDA

Re: [ ] what to do

> Darrell:

> Hi! I wanted to let you know that I bet you feel like a time

bomb

> waiting to go because of the unexpected seizures just popping up without a

> moments notice. I know I do. You are afraid to plan anything ahead

because

> you dont know if it will be the day you have a seizure and would have to

> cancel. I have lived with this fear for 38 years now and i know excactely

> how you feel.

> Yes, please do keep in touch and i will be saying a prayer for you. Not

> knowing anything is a grat risk of causing a seizure than knowing what is

> going on because you can then maybe build some type of life.

> Take care. I am here for ya. Just email or IM me.

>

>

>

>

>

[Guest guest]

Darrell:

When I read your emails a thought came to me: YOU are the only one who can

make the right decision for YOU. You need to decide how much your seizures

are affecting your life and if you want to do anything about it. It sounds

as if they are starting to really bug you, so it's time to look into ways to

control them. There are books out there (check your library) that talk

about all sorts of treatments. (One is called " Epilepsy, a New Approach " or

something like that by s and Reiter I think--I know there is a book

with a title similar to that, and I know there is a book by s and

Reiter but they may be two separate books). Something like yoga,

relaxation, meditation, nutrition might work for you. But if they don't and

things are not satisfactory, then you may want to look into drugs.

Different people react differently to drugs. A particular drug may be the

best thing for one person and cause terrible side effects in another person.

If you do start a drug, I would recommend you start a diary (if you don't

already have one) to keep track of your feelings (both emotional/mental and

physical). That may help you determine if you are better off with the

treatment or without it.

Hope this helps somewhat...Good luck.

>From: " dmccall " <dmccall3@...>

>Date: Sat, 12 Apr 2003 18:20:31 -0700

>

>Okay guys and girls sitting here with no clue what to do about these

>seizures. Had two gran mal last night in my sleep. The first lasting only

>about 30 seconds my wife told me and then I went back to bed and had

>another later on in the morning that lasted about 15 seconds. Not a lot of

>confusion but I still had them. they seem to come every 20 or 30 days. I am

>sore and my tongue is sore I have been taking good care of myself exercise

>and eating. Juicing well and meditating,but still they are here.I mean do I

>live like this or do I try and take some meds to end this nightmare. Please

>help me with some sound advice. Is the medication that traumatic or is it

>worth it to stop these seizures. I am sooo afraid that it will affect my

>working, although I have been living with the seizures for 5 years now.Like

>I said most of them come in my sleep. That is where they started in my

>sleep.So please help.

>Darrell

_________________________________________________________________

Help STOP SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

Darrell:

I second 's suggestion. Go to the public library and take a look

at the book, Epilepsy: A New Approach. But, you can also communicate

with one of the doctors who is featured in the book, Dr. Donna s,

by going to her web site and leaving e-mail. The web site is

www.andrewsreiter.com .

Good luck.

Lamar

McLauchlan wrote:

> Darrell:

> When I read your emails a thought came to me: YOU are the only one

> who can

> make the right decision for YOU. You need to decide how much your

> seizures

> are affecting your life and if you want to do anything about it. It

> sounds

> as if they are starting to really bug you, so it's time to look into

> ways to

> control them. There are books out there (check your library) that

> talk

> about all sorts of treatments. (One is called " Epilepsy, a New

> Approach " or

> something like that by s and Reiter I think--I know there is a

> book

> with a title similar to that, and I know there is a book by s

> and

> Reiter but they may be two separate books). Something like yoga,

> relaxation, meditation, nutrition might work for you. But if they

> don't and

> things are not satisfactory, then you may want to look into drugs.

> Different people react differently to drugs. A particular drug may be

> the

> best thing for one person and cause terrible side effects in another

> person.

> If you do start a drug, I would recommend you start a diary (if you

> don't

> already have one) to keep track of your feelings (both

> emotional/mental and

> physical). That may help you determine if you are better off with the

>

> treatment or without it.

>

> Hope this helps somewhat...Good luck.

>

>

>

> >From: " dmccall " <dmccall3@...>

> >Date: Sat, 12 Apr 2003 18:20:31 -0700

> >

> >Okay guys and girls sitting here with no clue what to do about these

> >seizures. Had two gran mal last night in my sleep. The first lasting

> only

> >about 30 seconds my wife told me and then I went back to bed and had

> >another later on in the morning that lasted about 15 seconds. Not a

> lot of

> >confusion but I still had them. they seem to come every 20 or 30

> days. I am

> >sore and my tongue is sore I have been taking good care of myself

> exercise

> >and eating. Juicing well and meditating,but still they are here.I

> mean do I

> >live like this or do I try and take some meds to end this nightmare.

> Please

> >help me with some sound advice. Is the medication that traumatic or

> is it

> >worth it to stop these seizures. I am sooo afraid that it will affect

> my

> >working, although I have been living with the seizures for 5 years

> now.Like

> >I said most of them come in my sleep. That is where they started in

> my

> >sleep.So please help.

> >Darrell

>

>

>

> _________________________________________________________________

> Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

>

>

>

[Guest guest]

okay everyone here I am sitting in front of my PC looking for some support.

Okay I had another seizure Thursday night while I was sleep.Last one was 20

days before that also in my sleep. Woke up to a sore tongue and confusion.

Anyway I have looked and found an epileptogist at the Burrow neurological

institute here in AZ.I have not called yet but will tomorrow. Okay my plans

are to have them examine me and hopefully do a sleep study on me.But in my

heart I know they are going to recommend medication. Something as some of

you know I have been avoiding for 5 years. But I am tired of this sh**t and

the effects of the seizures seem to be lasting longer and more profound. I

have been exercising juicing and caring for myself but still they

come.Everyone is trying to get off AED meds and here I am thinking of

getting on. Is it so bad.Or will it stop the seizures.and if it does stop

them is it worth the side affects if any.Well I know I am tired of living in

this shadow.But is the medication that bad. So any advice is welcome

although I hope I dont sound like a broken record from my last post. It's

just that I am scared.

Darrell

[Guest guest]

Darrell,

Not everyone with epilepsy has an option of being off medication for

good seizure control. But, there's nothing stopping you from asking

your doctors at that clinic if you have such options. So, by all means,

ask them. And, if you do not like the response they give you, seek some

second opinions online from other clinics. There are clinics which

actually try to get their patients off drugs - or at least reduce the

amount of medication they need as much as possible. One of those

clinics is s-Reiter. I encourage you to visit their website at

www.andrewsreiter.com and ask them questions via e-mail. Their answers

just might prove beneficial to you.

Good luck.

Lamar

[Guest guest]

Darrel,

You have brought up some very good questions. As for myself, the

side effects from the medicines are too much to bare and I am weaning

off. However, I am not weaning without options or alternative things

to try.

Neurologist only go so far. I have been to too many in my 20 + years

of seizures. Never once was I asked about allergies, whether that be

food or any other kind that could cause a seizure. Mercury toxicity

from silver fillings in ones' mouth, which was definitely part of my

problem. A vitamin deficiency. Low blood sugar. Stress or

environmental toxins that are causing this. There are so many things

that causes seizures and most Neurologist just don't do that kind of

detective work. They give you medicines to suppress the seizures, if

at all it works, in my case it didn't, without finding out what is

causing the seizures in the first place. It could be something as

simple as the carpet in your house. It could be anything. I had to

learn to do my own detective work and here with the knowledgeable

people, I have received so much help and applied them and they are

slowly working. One man seizures were stopped by taking B complex.

Another was stopped when he stopped eating a certain food because of

the MSG chemical in it. I can go on and on. I am by know means

telling you what to do, just giving you ideas. Let's see how much

the Dr. asks you and how much detective work they do. Good luck.

[Guest guest]

While young and not exposed to groups of " normal " children,

unsupervised -I believe that most preschool children don't need to

know they have a " problem " After all -how would they know if you

didn't tell them -a three year old doesn't know what is " normal "

So up to school age -it was always " everyone learns to talk " and " I

remember how frustrated I was when I was learning to talk " for

empathy -etc.

Once school age -and especially once a child starts asking, in a

child appropriate way -a bit at a time -I believe a child should

know about why they are having trouble with speech.

For Tanner at 5 I just said " When you were a baby you had high

fevers which gave your brain a boo boo that blocked the area where

most people speak from. But you Tanner are so amazing that you

learned how to speak using other areas of your brain -which you

still do -which is really amazing. People don't know for sure how

you are doing what you are doing -which makes you very special "

I told Tanner that most people only use a fraction of their brains -

and that he is amazing in that he has learned to talk using areas of

his brain that others don't use for speech -which even makes him in many

ways smarter than others! You can even for older children show them

on the internet how little of the brain the average person uses.

This was also how to get Tanner big time motivated to learn to write

and read. He knows that once he can be a fluent typer for example

on the computer -there are no thoughts that he can't express no

matter how complicated and long! (and I'm sure one day Tanner will

be able to verbally say them too -he's so amazing!)

Tanner again has no self esteem problems at all -and is fully aware

that some may at some point tease him due to the way he talks -we

talk about that too. We talk about everything -but in a light way.

He can ask whatever questions and talk about whatever he wants. If

it's important to Tanner -it is to us.

Tanner knows that teasing is done by those who don't feel very good

about themselves. I explained " Maybe for example their doggie just died or

something and they are upset so they take it out on you which isn't

right -but people do that. So if it ever happens -don't get upset

with them -they are already upset. Just ignore it and tell us and

the teacher about it. " Fortunately Tanner hasn't been teased more

than any other " normal " child -not at all or much to mention -but we

prepared him just in case for if and when.

As always -communication is the answer -most important. Got to run!

Tanner

http://www.debtsmart.com/talk/tanner.html

http://www.cherab.org/information/familiesrelate/letter.html

http://www.speech-express.com/latetalkerrelease.html

=====

[Guest guest]

Maybe point out that every kid needs help doing different things.

Also be sure to tell her what she does well (don't make it up).

My daughter's oral muscles are weak, so I tell her that the speech

therapist helps make them strong. I know that has sons and

doesn't like to say that they are weak. My daughter is more

concerned about being smart. She doesn't care about her mouth being

weak as long as she is smart.

I also always point out that my daughter is a good swimmer. She is

an identical twin, and I point out when she did things before her

twin sister. She is a lot smaller than her twin, so it was a lot

easier for her to do the monkey bars.

I also point out very time that she is working hard. I reward her

efforts, and I always truthfully tell her how proud I am that she is

working hard.

> My 5 year daughter has recently been asking when she is going to

> talk right and what's wrong with her because no one understands

what

> she says. She was diagnosed with apraxia last year where she

> received 2 individual speech therapy sessions a week, one group

> session and was in a class for the developementally delayed. This

> year she is attending regular kindergarten (per the recommendation

> of a 5 panel child study team) where she receives 2 individual

> speech therapy sessions per week and there is a special ed teacher

> in the class part of the day. The teacher is there primarily for

my

> dauther but the teacher helps the entire class as not to single

out

> my daughter.

>

> I am having a hard time dealing with her awareness of her problem.

I

> tell her that she has is getting help with her speech and that as

> long as we continue to practice things will get better.

>

> I, too, am having problems. Last year there were still quite a few

> children who were hard to understand but this year all her

> classmates sound so grown up that it makes me so sad and

frustrated.

> My daughter is also lashing out physically at me when I don't

> understand what she says. I truly understand how frustrating it

must

> be to have all these words and thoughts in one's head but they

can't

> get out. I can see her struggle to find a word that she can

> pronounce. Even then, I sometimes get it wrong and she flips. How

> horrible it must be for her when her own mommy doesn't understand.

> Sometimes I just sit and cry at night.

>

> Thanks for listening,

[Guest guest]

Hi Toni...

I was just curious on " who " you were seeing at the Children's Hospital in

Pittsburgh. You are in Pittsburgh...right?? We took our son to the Children's

Hospital of Pittsburgh North to see a SLP who's name is Hammer. Please let

me know if you are seeing someone different...I'm very interested in any

professional around here who knows about Apraxia.

Thanks...

Mandy..mom to 3.7yrs./apraxic

[Guest guest]

I wish I knew what to tell you. I have a similar problem with my 3 1/2 year

old. She throws things, hits, and pulls other people's hair when she can't

get her point across. There is so little she says that other people

understand that she gets so thrilled when someone gets it right. Right now

she's getting 1 individual speech session a week and 6 hours of class time

that is developmental therapy/group speech therapy. At the moment I'm

working on getting her individual therapy increased from 1 hour a week.

Unfortunatly I'm getting told that they're working on getting it increased

but they have limited staff and a lot of kids to see. When I called the

director asked if she had an official diagnosis and I was floored. Didnt

they read her file and pull it when they knew who we were talking about?

Obviously not. At the moment I'm kind of stuck since the local SLP couldnt

get the testing done on her and the first available appointment at

Children's Hospital for their developmental clinic is December 9, and we

need that testing done to back up the neurologist's diagnosis before our

insurance will cover private therapy. If I fight the school to get he more

therapy, by the time I get any results she'll have her appointment.

The only hope of getting things done sooner is when we go down at the end of

this month for her hearing screening, which is also for the insurance

comany's benefit, I can tell them I'm a stay home mom so as long as I have

90 minutes notice I can make any appointment if they have a cancellation. I

can actually make the trip in under an hour, but 90 minutes gives me time to

get the girls gathered. So if Hope happens to be in school that day I can

call her teacher and go pull her early to get there if I have to. Her

classroom has a direct line so I dont have to worry about someone in the

office not getting them a message.

Toni

[Guest guest]

I ache for my daughter too, when kids ask why she speaks differently. She

is 13 now and has some friends that are very accepting and even comment on

how her speech is improving, which really counts coming from another kid.

I have a cute story about when Meghan was younger ( probably 7). We were in

Disney World, back at the hotel swimming in the pool. Since there are

people from everywhere there with different accents and languages, I found

the humor and innocence in one little girl, who Meghan was swimming with

when she asked Meghan " What country are you from? Meghan so matter of

factly said " Medway! " ( Medway, MA) and the girls said " oh " and they

continued to swim happily.

Joyce Cerulo

Medway, MA

[ ] What to do

> My 5 year daughter has recently been asking when she is going to

> talk right and what's wrong with her because no one understands what

> she says. She was diagnosed with apraxia last year where she

> received 2 individual speech therapy sessions a week, one group

> session and was in a class for the developementally delayed. This

> year she is attending regular kindergarten (per the recommendation

> of a 5 panel child study team) where she receives 2 individual

> speech therapy sessions per week and there is a special ed teacher

> in the class part of the day. The teacher is there primarily for my

> dauther but the teacher helps the entire class as not to single out

> my daughter.

>

> I am having a hard time dealing with her awareness of her problem. I

> tell her that she has is getting help with her speech and that as

> long as we continue to practice things will get better.

>

> I, too, am having problems. Last year there were still quite a few

> children who were hard to understand but this year all her

> classmates sound so grown up that it makes me so sad and frustrated.

> My daughter is also lashing out physically at me when I don't

> understand what she says. I truly understand how frustrating it must

> be to have all these words and thoughts in one's head but they can't

> get out. I can see her struggle to find a word that she can

> pronounce. Even then, I sometimes get it wrong and she flips. How

> horrible it must be for her when her own mommy doesn't understand.

> Sometimes I just sit and cry at night.

>

> Thanks for listening,

>

>

>

>

>

>

>