sadness

[Guest guest]

How regularly should someone with Hep C be tested? My husband's doctor

recommends yearly. He does have cirrhosis, but the doctor described it this

way: " If someone needs a transplant at stage C, you are at stage A. " I had

a difficult time putting that into perspective.

[Guest guest]

I am at stage and grade 3. My doctor tested me every three months

before I started treatment. Now I get labs every month. With having

cirrhosis it should be more often than once a year. Is the doc checking

ammonia levels ? What about a ultrasound ? I would get a second

opinion on your doc's advice.

[Guest guest]

my thoughts and good wishes go out to the family of this man. ingnorance is

not bliss and we have the right to advance in the knowledge that can save our

lives.

every month now i have the following tested

Glucose, Serum; BUN; creatinine, Serum; sodium, Serum; potassium, Serum;

chloride, Serum; carbon dioxide, Total; protein, Total, Serum;

albumin, Serum: calcium, Serum; HEPATIC FUNCTION PANEL; alkaline

phosphatase, Serum; AST (SGOT) bilirubin, Total; BUN/CREAT RATIO; CBC

with DIFFERENTIAL PLATELET; ALT (SGPT); VENIPUNCTURE; Ammonia, Plasma

HCV RNA, PCR, QUANTITATIVE.

i took these off of two tests i don't think i repeated myself but i'm new at

this, so i might have. i too am still learning about testing.

ask your doctor to explain each of these tests for you. i can answer some

of them, but aren't you a nurse, Arlene? (are you out there?). ask for all

records, demand all answers and go till you find them. look to your local

area for a hep c support group. there is usually a doctor and a psycologist

at the meetings in most places. it is a way to get answers without having to

wait for an appt w/ your doc. contact the american liver foundation, (or

something like that) because after hep is liver disease.

hope all are doing well

[Guest guest]

Talyne, I am not a nurse and I struggle with all the medical terms. I

ask a lot of questions that annoy doctors and I research all I can on

the internet and books. Arlene

[Guest guest]

I have my first Doc appt. on Tuesday. After seeing the effects of the combo

treatment on my brother (he had to stop after 6 weeks) I really don't want to

go that route. I have already started on supplements (Milk thistle, NAC,

Schizandra, dandelion root, etc.) basically everything I have read about that

is detoxifying or regenerative for the liver. I have also cut out all dairy

products, caffeine, etc. Found a good book called the Liver Cleansing Diet

which has a bunch of great recipies. Hopefully I will have little liver

damage at this stage and can stick to this plan. I also was told about

Artichoke extract at the health food store. I was surprised I had not heard

about that before, with all the reading, research, etc, that I have been

doing for my brother the last several months. Anyhow, thanks again for being

out there. Sandy

[Guest guest]

It saddened me so to hear of s tragic accident. She was so young,

and had so much life to live. will be sadly missed, may she now

rest in peace, in Gods care.

_________________________________________________________

[Guest guest]

Just finished the post before this one and now I am sitting here with tears

streaming down my face!!

, you are so incredibly eloquent when you talk about Khalid and HE sounds

so wise and brave!!!! I am SO amazed at his perseverance!! I think he is going

to join those people that the book was written about only he will probably have

a book of his very own!!! I was crying because I was just so amazed at his

character and wisdom!! ANd hard work. I want that kind of compassionate

character SO much for my two sons! Micah loves basketball but will need that

same kind of determination if he is going to be successful like Khalid is. What

a gift Khalid has!! His strength is his character and he will bless the world

with it as he lives out his life!

Bridget,

we have truly all been there! and still really are there on some days! I hope

you feel as inspired with hope when you read 's story as I do. I remember

so vividly one day when some friends of ours who had moved out of state dropped

in to visit while they were back in town for a few days. We had been pregnant

together and Micah and her son were born a couple weeks apart. They were now

just over two....mine had just learned to walk and was still figuring out how to

negotiate stairs and hers was climbing the lil' tikes climber and slide and

JUMPING off the top!!! I held it together until they left and then sat down on

the back porch steps and sobbed and sobbed! It is like you have this flash of

the future and how incredibly hard it really is going to be and the sadness you

feel for your child is so profound and overwhelming! (have you read the

" holland " story....it expresses a lot of our feelings very well) Please know,

even in your sadness, that YOU ARE ABSOLUTELY NOT AT FAULT!!!! Remind yourself

again and again that any guilt laying truly is out of complete ignorance. You

are stuck with the sadness, but throw out all the guilt that may try to creep

in! The sadness isn't always so hard either....it changes you as a person, but

I think for the better.....it has helped me be less judgmental and more

compassionate and it has opened up a new world of friendships with people who do

really understand. The people who know it does STINT! (see 's story and

also Robyn's FUNNY story about the goat...another good laugh!). Have a great

day and give Kaeli a hug! Carol (mom to two boys who are riding the school bus

home and should be here soon)

[Guest guest]

Hello All,

I read the messages everyday but only post occasionally. I have been in contact

with , trying to get a support group going here in Pinellas county, FL. I

had just discussed the fact with her that my 3.6 yr old has been a problem

recently. It is really rough to deal with. I have 3 other children who also

need me ( yes even the 20 yr old ) & most of my time is consumed by the apraxic

child. It affects my relationships with friends, relatives & my spouse! It can

be so overwhelming at times, which for me has been most of the time lately! I

am so happy that I found this site this summer after was dx in Jan of this

year. I am not sure what I would have done without it!!! We all have had the

well wishers that give their advise & hurt us deeply. It is really neat to see

all the new names each week that find this site & share their stories. We all

have a true bond. I appreciate all the info that is given on this site. Thanks

to all!

God bless to all on this site!!

Tammy I. mom to 3 1/2 apraxic, 5, 17 stuttered severely as

young child, & 20 who moved out one week ago, & hasn't come home to do

laundry yet!!!

>Just finished the post before this one and now I am sitting here with tears

streaming down my face!!

>, you are so incredibly eloquent when you talk about Khalid and HE sounds

so wise and brave!!!! I am SO amazed at his perseverance!! I think he is going

to join those people that the book was written about only he will probably have

a book of his very own!!! I was crying because I was just so amazed at his

character and wisdom!! ANd hard work. I want that kind of compassionate

character SO much for my two sons! Micah loves basketball but will need that

same kind of determination if he is going to be successful like Khalid is. What

a gift Khalid has!! His strength is his character and he will bless the world

with it as he lives out his life!

>Bridget,

>we have truly all been there! and still really are there on some days! I hope

you feel as inspired with hope when you read 's story as I do. I remember

so vividly one day when some friends of ours who had moved out of state dropped

in to visit while they were back in town for a few days. We had been pregnant

together and Micah and her son were born a couple weeks apart. They were now

just over two....mine had just learned to walk and was still figuring out how to

negotiate stairs and hers was climbing the lil' tikes climber and slide and

JUMPING off the top!!! I held it together until they left and then sat down on

the back porch steps and sobbed and sobbed! It is like you have this flash of

the future and how incredibly hard it really is going to be and the sadness you

feel for your child is so profound and overwhelming! (have you read the

" holland " story....it expresses a lot of our feelings very well) Please know,

even in your sadness, that YOU ARE ABSOLUTELY NOT AT FAULT!!!! Remind

yourse>lf again and again that any guilt laying truly is out of complete

ignorance.

[Guest guest]

Michele,

I was very moved by your message. I can remember so clearly the day some

friends who had moved out of state came back to visit. Their son had been

born a couple of weeks before my son and they were both now two. I had been

dealing with my son's global delays since nine months of age but that day I

felt powerfully slapped in the face and the grief and sadness overwhelmed

me! I sat alone on the back steps and just sobbed in my heart because the

full impact of just how delayed my son was and what he was up against really

hit hard. It sounds like that is what happened to you on Easter. Michele,

let yourself feel the sadness! That is the only way to get through it. It

is sad! None of our children should have to go through this. On the other

hand, all of us have our own pain and life has taught me over and over that

sometimes the people that seem to have it altogether, don't......in the

sense that they too have their pain that we know nothing about. I wish I

could tell you that over the years the sadness has gone away, but it hasn't.

Most days are okay, but there continue to be days such as Easter when it

hits real hard and the sadness is very heavy. But, as the others wrote in,

it has always helped me to focus on my child's strengths and positive

attributes and to keep bringing myself back to (without trying to squelch

the sadness) how blessed I am to have him in my life and what a joy he is.

My son is almost eight and the proefa didn't provide any miraculous cure or

spurts for him either and I too was very let down when after three months I

saw no change.....but it doesn't hurt to try. Hang in there Michele, we

hear you! Carol ( mom to C.J. and Micah)

[Guest guest]

Thanks Carol for your message to Michele. Since I know Holidays can

be rough in general -I wanted to also send this message out to

Michele and anyone else feeling down.

I know it's hard at times -but from one who was where you are and is

on the other side -it's OK to get frustrated or sad or scared at

times.

The same things that excite us and make us happy one day -can be the

very same thing that terrifies us the nest. For example -we get

excited over any positive surges our children have -read the posts

here. The first time a child points to a TV screen and says " mmm "

when looking at a cookie. Or what about my Early

Intervention " goal " in writing for my son Tanner by the time he

turns three. All my husband and I wanted was for " Tanner to point

to a ball and said " ba " They reach that " goal " and even though at

first we are happy -after that we at times don't know if we should

laugh or cry over our happiness. " He's three years old and it took

months of therapy to teach him to say " ba " ! "

Where does it change from hope to gloom? -many times when we compare -which we

know we

are never supposed to do. We see the family at a Holiday party

after a few months -that's a biggie. All the people that ask

you " Is he talking yet " in one room at the same time watching him.

And then if your brothers or sisters have children around the same

age or younger -how can you not compare? I don't know why seeing

the comparisons in your nephews and nieces is harder at times then

in your friends children -I know it was for me too. Maybe it's

because you realize that even if you don't compare -all the rest of

your family is silently (or worse not silently) comparing too!

The best advice I received about this was from Tanner's Early Intervention

therapist Zimet CCC SLP. She told me to keep a journal and write down

how Tanner

is -so I can look back and see how far he's come. Of course being I

never was one for keeping a journal (I had good intentions -but

never kept up with them after a brief start) I was good at posting

here however -many of you are too -read your old messages.

For all of you who are frustrated when your two year old or three

year old " only " has 5, or 50, or 100 words -there are parents in

this group with teenagers with apraxia who use an augmentative

device to communicate and who never said a word up to the age of

six. Comparisons just will drive you crazy because you can always

find someone who does something faster or younger or slower or

older. None of that is any indication of intelligence.

I believe a healthy place to compare is the Talking Page

http://www.debtsmart.com/talk At least it's a more level playing

field -each of the children on that page has a speech and language

disorder diagnosed as apraxic. (and keep in mind the first time

Tanner is taped on there is after " nine " months of EFA

supplementation -and that was considered a huge incredible surge for

him -and it was)

A diamond is a piece of coal under intense heat and pressure for a

long long time. Our children are diamonds that will shine brighter

because of the love we show them, the hard work that will pay off,

and because even though it's OK to feel the dark side of fear and

anger as to why is this happening to our child, and why does it have

to be so much harder for them -we show our child excitement over

each new sound they make, each new attempt. So to each child who

said " bunny " or another " new " word this weekend -Hooray for you!!!

We are our children's best cheerleaders -and if we aren't -who will

be?

We are here for you!

=====

[Guest guest]

Thank you to everyone that responded to me. I am feeling better today. I

usually am able to handle my fears, depression, and frustration with 's

apraxia, but every couple of weeks I just get all upset again. I guess it

builds up. I am glad I found this support group. It is nice to finally talk to

someone who is going through similar feelings. I do not have any friends or

family members with special needs children so they cannot possibly relate to

what I am going through, even if they say they understand. I just want to know

I am doing everything possbile and trying everything possible to help me son

talk. I am praying for the day he finally starts to use one word on a regular

basis. At 2 1/2 I expected at least one word, and all he does is babble. I

hope he comes around soon. Thanks again for all your support. Michele

[Guest guest]

Hi Michele!

From a child's eye may help to remember during the next sadness

attack to show you no matter what... there is always hope!

When our child is two years old you typically hear - " he's

just a late talker " with the " what's wrong with him? " starting

sometime between two and three. In one day you could hear them both

back to back. One extreme to the other! As parents we are supposed

to be able to not only help our child -but try to figure out what

that means. How?! We at times explain to a new professional working with our

child what type of speech disorder another professional (or two or

three) diagnosed our child with, only to hear a different opinion

from them! We need to know about therapies, insurance, school,

teasing, frustrations -and how can we best help our child and make

others understand at a time when most of us only were parents for two or three

years -and this stuff isn't covered in our baby books our moms gave us!

We needed to have a book to address all these issues -not just

therapy -but the basics of what else is important to know in real life. A book

I so

wish (I could cry) that I had when Tanner was a 11 months old and regressed

from fevers and stopped babbling and became lethargic. A book that I wish

could have gone back in time.

That book is The Late Talker book, and it is from the parent's

and the child's perspective. I do understand the frustration of all

of it -and so do most of the parents in this group (many who are

quoted in The Late Talker -and thanks to them all for allowing us to

share!) The Late Talker is also from the professional's perspective - (and

thanks to all of them for sharing!)

you will understand so much more to be able to help your child. Many times

after saddness -we blame others - we get angry. Once we understand -we can best

work together to help our children

find their voices.

We can depend on each other for support -and as a shoulder to cry on

when needed -or a friend to truly share in your happiness when your

child says each new sound or word, or as teachers to show you the

way. If we can stay strong and teach our children they 'are'

special, just how they are, and no matter how they have to

communicate in the future (verbal, sign etc.) -then one day like Abe

(and many others) they can perhaps grow up to say something like:

http://www.nsastutter.org/letgo/as_297.html

What I Learned About Stuttering

by Abe

The first time I realized I had a stuttering problem was in second

grade when I stood up and proudly answered the teacher's question

with the correct answer of " Pen-Pen-Pennsylvania. " A fellow second

grade student then made this haughty remark, " What's wrong with

you? " As I stared at the student with a blank expression on my face,

I could not even comprehend what my classmate meant. My head was

spinning. The only response I could muster out was, " What d-d-do you

mean? " The student then replied, " You talk funny. " The teacher then

called for my classmate to leave the room.

Why, I did not know, but the words of my classmate stuck to me like

crazy glue. I could not understand why he had said the words he had.

When I arrived home that disconcerting day, my words of " Hello,

Mom!, " were intermingled in my mind with words from my sorrowful

question, " Mom, do I t-t-talk weird? " " Well, Abe, " my mother replied

in a concerned voice, " you d-d-do stutter. " " Stutter, " I

questioned, " wh-wh-what's that? " " Well, stuttering is go-go-going

over sounds in words, like when I pronounced the word, 'going,' "

said mother.

" It just makes you unique and very special. Okay? "

I could not believe what I just heard. I didn't want to be special.

I wanted to be normal. My eyes flooded with tears. They felt cold

running down my checks. My mom saw the devastation in my eyes and

said, " I am so sorry, Abe. You inherited that from me; I stutter

too. "

" But I don't want to stutter. Kids will make fun of me, " I screamed

in a high pitched voice. " I want to be normal like other kids. Why

can't I be normal? Why can't..., " I yelled as my words got blocked

in my throat. My mom put her arms around me and gave me a long hug.

" It will be all right, " my mother said. 'There are people who can

help you be more fluent. "

The people who my mom talked about were the school's speech

therapists. I hated going to therapy. For one thing, I hardly saw

any progress in my speech; I still stuttered. Another reason I

didn't like going to therapy was because my " speech time " always

occurred in the middle of class. This meant the classes attention

always transferred from the teacher to me. And once again, the kids

would snicker and mimic my stuttering. I felt alienated from

everyone.

The teasing did not occur just at speech time, unfortunately, but

also during every other facet of my life as well. I took it all

very, very hard. Every school night I would pray that the pain and

alienation I felt would go away. I prayed especially hard that my

stuttering would go away, forever.

Now, I am in ninth grade and I have changed in many ways. The

biggest change is that my idea of stuttering has been altered

dramatically. Instead of praying that my stuttering will end, I am

comfortable with my handicap. Now, if I stutter when answering a

question in class, I just shrug off the incident like a child does a

jacket on a warm summer day.

I also feel that stuttering is a positive contributing factor to my

personality today. I have developed a deep respect for people who

have handicaps, especially handicaps worse than stuttering such as

being blind. Blind people have had to face not only ridicule but

also living without their sight.

Finally, unlike before when I would become an emotional wreck when

teased about my stuttering, the snickering and mimicking doesn't

sting so badly. I now understand that people who make fun of other

people with disabilities or handicaps have inferiority complexes.

Their poking fun at other people somehow makes them feel better

about themselves.

In reflection, even though the experience that I had while going to

speech therapy was like going to the doctor's and getting shots in

my navel for rabies. I now find that without therapy, I would have

been chronically depressed. I would have thought that I was the only

one with a speech impediment. In reality, stuttering is not that

uncommon. Some of the famous people who stuttered in the past are

Moses and Winston Churchill. Today's examples of people who stutter

include Ozzie and Earl . And, a second benefit I

received from attending speech therapy classes was that I learned

some aids for fluency. These include deep breathing and " turtle

speech. "

Perhaps more than anything else, I have learned that every person

has a handicap of some sort. It is how, or if, that person deals

with his or her handicap that will determine his or her happiness in

life. My handicap is stuttering. I began to stutter when I was in

the second grade and although I have improved in my fluency, I still

stutter. My stuttering has made me who I am today. Without it, I

would be a foreign Abe --a worse Abe . Therefore, in spite

of all the bad experiences and all the torture. I wouldn't change a

thing. Mom was right. I am special!

Abe is 15, in the ninth grade, and enjoys football and Nintendo. He

lives in Columbia, Missouri.

http://www.nsastutter.org/letgo/as_297.html

=====

[Guest guest]

Hi,

My name is Kathy and my daughter Kayla is five. She too have been on the

ProEFA for two months and I have only notice that her behavior was becoming

very hyper. Kayla is nonverbal with fine motor delays. I agree it is hard

when you see other children their age doing things that your child is not

doing. But we have to hang in there and remember God does not make mistakes.

I feel for you and completely understand everything that you are going

through. I too have my days of wanting to just give up and just stay in bed

with the covers over my face. But I know I cannot because my little one

needs me more than anything. She too will talk one day and her fine motor

skills will not always behind I have to believe in that.

Kathy,

Laurel, land

[Guest guest]

I've read many posts that for some children, switching from Pro-EFA to Pro-DHA

really helps with behavior problems while still providing speech benefits. I've

also read about adding Carn-aware (L-Carnosine) enhances speech.

Re: [ ] Re: sadness

Hi,

My name is Kathy and my daughter Kayla is five. She too have been on the

ProEFA for two months and I have only notice that her behavior was becoming

very hyper.

[Guest guest]

I read your post yes there is hope! My four children all severely

apraxic still face challenges everyday. I do not want to discourage you

at all, but I guess we need to be realistic. My three older children are

twice exceptional. I believe if it is severe this disorder will affect

them for the rest of their lives. I would imagine because it is

neurological. God Bless!!

-----Original Message-----