Hello

[Guest guest]

Lynn,

Didn't the hospital give you a list of what you can and can't eat? With

the major surgery that you had,

I'm surprised that a dietician didn't see you before you were released.

Have you considered baby food?

It would be easy on the digestive track. Creamy soups, oatmeal or cream of

rice or wheat, are things I

would think of to eat. Maybe if you had a favorite soup you could put it in

the blender and make it

creamier? Of course there is jello, ice creams and pudding, but I think

those would go down pretty easy

NO nuts in the ice cream. My favorite " don't feel good " food is oatmeal. I

cook fruit in it and add some

honey. It goes down easy (for me) and taste good especially with peaches.

I know some people gag

at the thought of oatmeal. Cream of wheat made with milk instead of water

is also really good.

I hope Rick feels better soon. Don't worry about asking him about that med.

's doctor explained

it pretty well. Since the nerve block worked, hopefully he won't have to

take any meds. He is still at

100% pain relief. It makes me really mad that his first doctor didn't do

something like this. He's been

suffering for close to 2 years.

Thank Carol for those pictures! She sent them to me. They really were

beautiful. I'm feeling better emotionally,

but am trying to get over a flare. It's the first flare I've had in months,

so I shouldn't complain, but I will anyway LOL!

I guess it's the change in weather. The dreaded winter is coming.

September 11th has impacted us more than we think. I just wonder if we'll

ever feel safe again.

I hope you figure out something to eat.

Hugs,

a

Re: [ ] hello

>

>

> Hi a,

> I am sorry for not getting back to you. How is feeling? I

hope

> everything went well.

> I had a little set back. I went to the drs. and he removed the

> staples

> and four of the five drains. On the ride home I started to have a lot of

> pain from my ribs which is were the drains went. I had to call the

> hospital at 2 am the pain was so bad. They told me it is normal that

when

> they pulled the drains out they traumatised everything. So for the next

> few days it is going to hurt. They told me to take the tylenol and

> codeine. I just wished they had told me about this at the drs. office.

> Good news all the test are back and there is no cancer.

> I will catch up with everything here soon, I hope.

> Lynn MeMom

>

>

>

>

[Guest guest]

Don't mean to barge in on your conversation ladies but you made a comment

a about if we will ever feel safe again. I don't think I will. I still

have 3 friends missing in the WTC. Presumed dead. It has affected me more

than I thought.

And now I was watching the news today and they had said that Bin Laden may

do more harm. That is even more scary. But I guess we have to live each day

and pray for the best.

hugs,

Colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: " a " <paula54@...>

>Reply-

>< >

>Subject: RE: [ ] hello

>Date: Fri, 28 Sep 2001 15:00:11 -0400

>

>Lynn,

>Didn't the hospital give you a list of what you can and can't eat? With

>the major surgery that you had,

>I'm surprised that a dietician didn't see you before you were released.

>Have you considered baby food?

>It would be easy on the digestive track. Creamy soups, oatmeal or cream of

>rice or wheat, are things I

>would think of to eat. Maybe if you had a favorite soup you could put it

>in

>the blender and make it

>creamier? Of course there is jello, ice creams and pudding, but I think

>those would go down pretty easy

>NO nuts in the ice cream. My favorite " don't feel good " food is oatmeal.

>I

>cook fruit in it and add some

>honey. It goes down easy (for me) and taste good especially with peaches.

>I know some people gag

>at the thought of oatmeal. Cream of wheat made with milk instead of water

>is also really good.

>I hope Rick feels better soon. Don't worry about asking him about that

>med.

>'s doctor explained

>it pretty well. Since the nerve block worked, hopefully he won't have to

>take any meds. He is still at

>100% pain relief. It makes me really mad that his first doctor didn't do

>something like this. He's been

>suffering for close to 2 years.

>Thank Carol for those pictures! She sent them to me. They really were

>beautiful. I'm feeling better emotionally,

>but am trying to get over a flare. It's the first flare I've had in

>months,

>so I shouldn't complain, but I will anyway LOL!

>I guess it's the change in weather. The dreaded winter is coming.

>September 11th has impacted us more than we think. I just wonder if we'll

>ever feel safe again.

>I hope you figure out something to eat.

>Hugs,

>a

>

>

> Re: [ ] hello

> >

> >

> > Hi a,

> > I am sorry for not getting back to you. How is feeling? I

>hope

> > everything went well.

> > I had a little set back. I went to the drs. and he removed the

> > staples

> > and four of the five drains. On the ride home I started to have a lot

>of

> > pain from my ribs which is were the drains went. I had to call the

> > hospital at 2 am the pain was so bad. They told me it is normal that

>when

> > they pulled the drains out they traumatised everything. So for the next

> > few days it is going to hurt. They told me to take the tylenol and

> > codeine. I just wished they had told me about this at the drs. office.

> > Good news all the test are back and there is no cancer.

> > I will catch up with everything here soon, I hope.

> > Lynn MeMom

> >

> >

> >

> >

[Guest guest]

Colleen,

There is no barging in on conversations here. Anyone is free to answer any

email from the group. Many of us

have private conversation OFF the list, but anything posted here is for

general conversation.

I am so sorry that your friends were at the WTC and are presumed dead. It

is awful, and I have no words that

can take away your pain. I wish I could say that your fears are unfounded.

The only way I am staying sane

is to keep telling myself that we are much safer than we were on September

10th. On September 10th, we had

no idea that our country was under threat of such awful crimes. We went

about our lives feeling safe.

Now that we know that these threats exist, our eyes are opened. Security

measure are being taken, and we

have to pray that any further attempts will be thwarted. We will never let

our guard down again, and that is a lesson

that this country will never forget. It is hard not to be afraid, but I

hope we can be strong enough to not let fear

consume our lives. If this happens the terrorists will cause more harm to

all of us. Because these terrorists

have been able to co-exist in our society with no flags raised is

particularly bone chilling. I hope you find some

comfort in knowing it is a global effort to end the scourge of terrorism.

hugs,

a

Re: [ ] hello

> >

> >

> > Hi a,

> > I am sorry for not getting back to you. How is feeling? I

>hope

> > everything went well.

> > I had a little set back. I went to the drs. and he removed the

> > staples

> > and four of the five drains. On the ride home I started to have a lot

>of

> > pain from my ribs which is were the drains went. I had to call the

> > hospital at 2 am the pain was so bad. They told me it is normal that

>when

> > they pulled the drains out they traumatised everything. So for the next

> > few days it is going to hurt. They told me to take the tylenol and

> > codeine. I just wished they had told me about this at the drs. office.

> > Good news all the test are back and there is no cancer.

> > I will catch up with everything here soon, I hope.

> > Lynn MeMom

> >

> >

> >

> >

[Guest guest]

June,

Thanks, I only wish I could ease the fears. Our leaders and our military

will have to do that job, and I have

confidence that in time they will do just that. We will emerge a stronger

and wiser nation.

It's great that your surgery is done on your ear. I know what you mean

about those nodules on the feet. I

have one that drives me nuts. At least I only have one. Your poor feet

sound like you walked a thousand

miles barefoot on the rocks! Is your nodule soft and squishy or are they

hard? Mine is soft, is about the size

of a large pea, and it changes in size from hurting to killing me. The

other nodules I had in my ankles were

always hard. This one is different.

I know you are looking forward to teaching your next group of med students!

I hope nothing stands in your way.

What you are doing is so important. I wish every med student was taught

about arthritis by actual patients.

No books can provide the insight that you provide. I hope you have a

painfree weekend.

hugs,

a

[ ] hello

Hi a,your answer to Colleen's post was extremely well written and if

we all read it and think about it, fears should be somewhat eased.

I am so sorry Colleen,this must be very hard for you, knowing close

friends may be gone because of this terrible act.

On an upside, my operation was this morning,plastic surgeon cut out the

cancer,stitched up my ear,all in about 20 mins. I hope this is the end

of it,this poor ear has seen too many surgeries and have already lost

the inside shell of the ear. He even took time to look and xray the

nodule on the side of my foot and he may remove this when I go to get

the stitches out of my ear. My feet are a terrible mess with nodules all

over the bottom,claw toes,hammer toes,you name it,but this lump is

giving me the most pain since it doesn't matter what shoe I wear,the

pressure is always there. In order to walk,I have to have shoes on at

all times. So,I am ever hopeful of finding some relief. My teaching

starts next week with a new group of medical students and I don't want

surgeries to interfere with it.

Hope everyone has a comfortable weekend.

Hugs

June

[Guest guest]

Thanks a. I never did realize the things you just told me. Made me look

at things a little different.

Colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: " a " <paula54@...>

>Reply-

>< >

>Subject: RE: [ ] hello

>Date: Fri, 28 Sep 2001 16:11:07 -0400

>

>Colleen,

>There is no barging in on conversations here. Anyone is free to answer

>any

>email from the group. Many of us

>have private conversation OFF the list, but anything posted here is for

>general conversation.

>I am so sorry that your friends were at the WTC and are presumed dead. It

>is awful, and I have no words that

>can take away your pain. I wish I could say that your fears are unfounded.

>The only way I am staying sane

>is to keep telling myself that we are much safer than we were on September

>10th. On September 10th, we had

>no idea that our country was under threat of such awful crimes. We went

>about our lives feeling safe.

>Now that we know that these threats exist, our eyes are opened. Security

>measure are being taken, and we

>have to pray that any further attempts will be thwarted. We will never let

>our guard down again, and that is a lesson

>that this country will never forget. It is hard not to be afraid, but I

>hope we can be strong enough to not let fear

>consume our lives. If this happens the terrorists will cause more harm to

>all of us. Because these terrorists

>have been able to co-exist in our society with no flags raised is

>particularly bone chilling. I hope you find some

>comfort in knowing it is a global effort to end the scourge of terrorism.

>hugs,

>a

>

>

>

> Re: [ ] hello

> > >

> > >

> > > Hi a,

> > > I am sorry for not getting back to you. How is feeling?

>I

> >hope

> > > everything went well.

> > > I had a little set back. I went to the drs. and he removed the

> > > staples

> > > and four of the five drains. On the ride home I started to have a lot

> >of

> > > pain from my ribs which is were the drains went. I had to call the

> > > hospital at 2 am the pain was so bad. They told me it is normal that

> >when

> > > they pulled the drains out they traumatised everything. So for the

>next

> > > few days it is going to hurt. They told me to take the tylenol and

> > > codeine. I just wished they had told me about this at the drs.

>office.

> > > Good news all the test are back and there is no cancer.

> > > I will catch up with everything here soon, I hope.

> > > Lynn MeMom

> > >

> > >

> > >

> > >

[Guest guest]

June:

Thanks. I am glad to hear that everything is going ok...as much as it

can. I am thinking and praying that it will continue to get better.

Colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: JUNE <juner24@...>

>Reply-

> " " < >

>Subject: [ ] hello

>Date: Fri, 28 Sep 2001 19:11:22 -0400

>

>Hi a,your answer to Colleen's post was extremely well written and if

>we all read it and think about it, fears should be somewhat eased.

>I am so sorry Colleen,this must be very hard for you, knowing close

>friends may be gone because of this terrible act.

>On an upside, my operation was this morning,plastic surgeon cut out the

>cancer,stitched up my ear,all in about 20 mins. I hope this is the end

>of it,this poor ear has seen too many surgeries and have already lost

>the inside shell of the ear. He even took time to look and xray the

>nodule on the side of my foot and he may remove this when I go to get

>the stitches out of my ear. My feet are a terrible mess with nodules all

>over the bottom,claw toes,hammer toes,you name it,but this lump is

>giving me the most pain since it doesn't matter what shoe I wear,the

>pressure is always there. In order to walk,I have to have shoes on at

>all times. So,I am ever hopeful of finding some relief. My teaching

>starts next week with a new group of medical students and I don't want

>surgeries to interfere with it.

>Hope everyone has a comfortable weekend.

>Hugs

>June

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

You're welcome Colleen. I'm glad I could help a little. I hope you get

news of your

friends soon.

a

Re: [ ] hello

> > >

> > >

> > > Hi a,

> > > I am sorry for not getting back to you. How is feeling?

>I

> >hope

> > > everything went well.

> > > I had a little set back. I went to the drs. and he removed the

> > > staples

> > > and four of the five drains. On the ride home I started to have a lot

> >of

> > > pain from my ribs which is were the drains went. I had to call the

> > > hospital at 2 am the pain was so bad. They told me it is normal that

> >when

> > > they pulled the drains out they traumatised everything. So for the

>next

> > > few days it is going to hurt. They told me to take the tylenol and

> > > codeine. I just wished they had told me about this at the drs.

>office.

> > > Good news all the test are back and there is no cancer.

> > > I will catch up with everything here soon, I hope.

> > > Lynn MeMom

> > >

> > >

> > >

> > >

[Guest guest]

Hi a,

The hospital didn't give me anything and neither did the doctors. I so

wish I had thought to ask to speak to a dietician. I have been eating

oatmeal, I love it. It is so strange I can eat oatmeal but the other

night I ate corn flakes and got ill. It is just hard to find the right

thing. I am going to call my primary and see what he has to say. ,

sent some sites I am going to look at them today. She always comes

through. I have told her, she is so good at research. Between the two of

you, we are all so lucky to have found this group.

Glad to hear things went well for . Hope you are feeling better

today.

Lynn MeMom

----------

> From: a <paula54@...>

>

> Subject: RE: [ ] hello

> Date: Friday, September 28, 2001 3:00 PM

>

> Lynn,

> Didn't the hospital give you a list of what you can and can't eat? With

> the major surgery that you had,

> I'm surprised that a dietician didn't see you before you were released.

> Have you considered baby food?

> It would be easy on the digestive track. Creamy soups, oatmeal or cream

of

> rice or wheat, are things I

> would think of to eat. Maybe if you had a favorite soup you could put it

in

> the blender and make it

> creamier? Of course there is jello, ice creams and pudding, but I think

> those would go down pretty easy

> NO nuts in the ice cream. My favorite " don't feel good " food is oatmeal.

I

> cook fruit in it and add some

> honey. It goes down easy (for me) and taste good especially with

peaches.

> I know some people gag

> at the thought of oatmeal. Cream of wheat made with milk instead of

water

> is also really good.

> I hope Rick feels better soon. Don't worry about asking him about that

med.

> 's doctor explained

> it pretty well. Since the nerve block worked, hopefully he won't have to

> take any meds. He is still at

> 100% pain relief. It makes me really mad that his first doctor didn't do

> something like this. He's been

> suffering for close to 2 years.

> Thank Carol for those pictures! She sent them to me. They really were

> beautiful. I'm feeling better emotionally,

> but am trying to get over a flare. It's the first flare I've had in

months,

> so I shouldn't complain, but I will anyway LOL!

> I guess it's the change in weather. The dreaded winter is coming.

> September 11th has impacted us more than we think. I just wonder if

we'll

> ever feel safe again.

> I hope you figure out something to eat.

> Hugs,

> a

>

>

> Re: [ ] hello

> >

> >

> > Hi a,

> > I am sorry for not getting back to you. How is feeling? I

> hope

> > everything went well.

> > I had a little set back. I went to the drs. and he removed the

> > staples

> > and four of the five drains. On the ride home I started to have a lot

of

> > pain from my ribs which is were the drains went. I had to call the

> > hospital at 2 am the pain was so bad. They told me it is normal that

> when

> > they pulled the drains out they traumatised everything. So for the

next

> > few days it is going to hurt. They told me to take the tylenol and

> > codeine. I just wished they had told me about this at the drs. office.

> > Good news all the test are back and there is no cancer.

> > I will catch up with everything here soon, I hope.

> > Lynn MeMom

> >

> >

> >

> >

[Guest guest]

Hi -

It sounds like your daughter does indeed show a lot of signs of Apraxia.

You said her most recent diagnosis was " possible Apraxia " . Was that made by

a speech therapist? I just thought I'd suggest that you see a

neurodevelopmental physician to get a complete medical diagnosis. Although

speech therapists are certainly very knowledgeable with Apraxia, a

neurodevelopmental physician will look at your daughter from many different

angles and once she is correctly diagnosed, they will probably be able to

help you create a plan of action. My neurodev. pointed out things to me

that I hadn't even realized like the fact that my son has sensory

integration issues. I always knew he reacted strongly to certain things

like toothbrushing, hairbrushing, wind on his skin etc. but I just thought

" that was " . After she diagnosed him as having sensory issues, I was

able to read about it, learn what to do and enroll him in occupational

therapy to start helping him with this.

Your already one step ahead because at 15 months, you're already involved in

Early Intervention. Keep seeking information as you are and I'm sure your

daughter will make progress. It may be hard to get an official diagnosis of

Apraxia because she is quite young but you can certainly be pointed in the

right direction by someone who is very familiar with it.

Best of luck to you and your family. I'm glad you found this list because

there's a lot of great people with great ideas on it. Take care!

in NJ

KDR-1@...

hello

I have joined this list and instantly felt overwhelmed with information, but

that is a good thing. I have two children, both were born early at 32 and

33 weeks for no apparent reason. They both were 4lbs and stayed

approximately a month in NICU with different issues. is four and has

cerebral palsy, spastic diplegia. He uses a walker but otherwise a very

bright and wonderful child. He has incredible verbal skills way above his

age level. is 15 months old and she is the reason that I come to you

for information. Her most recent diagnosis is " possible apraxia " .

had apnea and difficulty feeding in the NICU. She never needed oxygen

and seemed so strong in comparison to my son's stay in NICU. When she came

home she also had severe reflux that went untreated until she was 8 months

old. ( " Oh, I am over reacting since had special needs " blah blah )

She would shriek for hours on end and it was so hard to get her to take a

bottle. There was no way for her to nurse like her brother so after about

4-5 months I gave the pumping up and we tried every formula out there. She

was always called a serious baby, very quiet. She has called microcephalic

until recently when she measures slightly above the standard deviations.

When she was 7 months I did start the early intervention services mainly for

feeding problems and speech/expressive language. I truly thought she might

be autistic since she never seemed to want to interact with anyone. Her

motor skills are coming along, slower than what is normal, but they are

progressing. Her hearing has been tested and retested as normal. Her

vision is fine. She had a MRI at 8 months and were told that all was good

with that, but our new doctor is going to relook at the results and probably

have another MRI done when she is a little older. She has had so many blood

tests done looking for any metabolic problem or genetic disorder.

makes only a few sound with different pitches .... mh, mmm. She loves

to scream. She still eats baby food, but at least she can take small lumps

now without gagging. She will suck more than chew cheerios now. She really

hates to eat still, like it is a chore. I have gotten her to stick out her

tongue a few times so it does come out, but I think that her mouth is weak.

When she eats, the food ends up being pocked between her gums and

lips/cheeks. I can help her eat more when I take the spoon in sideways and

like touch her tongue and dump the food on it if that makes sense. A sippy

cup is out of the question for her.

I know she can communicate....she will make sounds when you talk to her in

response. She may even be saying uhma for momma or buh for brother. It

seems like a repeated intentional sound. We have been trying sign with

her, but she has a thing with her hands that we have been told is genetic

that makes her hands want to draw up, contract...some fingers are worse than

others and we have to constantly keep them stretched.

Anyway, I hate to be so long but I wanted to say hello and sort of tell you

where we are right now with Em.

Sincerely,

Rooker

[Guest guest]

Deb:

you are in my thoughts and prayers....

Colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: Auntblabbie2000@...

>Reply-

>

>Subject: [ ] HELLO

>Date: Fri, 9 Nov 2001 20:43:02 EST

>

>

>

>I am sorry that I have worried so many of you. I am home right now but

>having a VERY difficult time with the knee surgery recovery (many, many

>complications), bronchitis, pneumonia, gi bleeding and of course, a

>horrific

>flare. Fingers won't work too well so I can't write too much. I will try

>to

>keep you all better informed.

>

>Gentle, tender, angel hugs,

>

>As ever,

>

>Deb

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Deb,

I am so glad to see you are home. I have been so worried about you. It

sounds like you had a bad time. Rest and when you feel up to it let us

know how you are feeling.

Lynn

----------

> From: Auntblabbie2000@...

>

> Subject: [ ] HELLO

> Date: Friday, November 09, 2001 8:43 PM

>

>

>

> I am sorry that I have worried so many of you. I am home right now but

> having a VERY difficult time with the knee surgery recovery (many, many

> complications), bronchitis, pneumonia, gi bleeding and of course, a

horrific

> flare. Fingers won't work too well so I can't write too much. I will

try to

> keep you all better informed.

>

> Gentle, tender, angel hugs,

>

> As ever,

>

> Deb

>

>

[Guest guest]

Deb,

I'm sorry you're having such a hard time. Seems you've had a horrible year.

Thanks for posting, I've been worried about ya. Sending healing thoughts and

prayers your way. Tery

[Guest guest]

hey debs welcome home, rest and feel better soon. sorry to hear you are

having such a rough time. kathy in il

[Guest guest]

Hi Deb. I'm sorry that you've had such a rough

time. I wish you had better news.

I know it's hard to write when your fingers hurt

so much. I hope this flare passes

quickly and you start to feel better soon.

hugs,

a

[ ] HELLO

I am sorry that I have worried so many of you.

I am home right now but

having a VERY difficult time with the knee

surgery recovery (many, many

complications), bronchitis, pneumonia, gi

bleeding and of course, a horrific

flare. Fingers won't work too well so I can't

write too much. I will try to

keep you all better informed.

Gentle, tender, angel hugs,

As ever,

Deb

[Guest guest]

Thank goodness you are home, Deb! I'm sorry to hear that you had so many

awful complications (again!), but I am happy to have some word from you.

Please feel better soon and keep us posted when you can. I've been thinking

of you.

[ ] HELLO

>

>

> I am sorry that I have worried so many of you. I am home right now but

> having a VERY difficult time with the knee surgery recovery (many, many

> complications), bronchitis, pneumonia, gi bleeding and of course, a

horrific

> flare. Fingers won't work too well so I can't write too much. I will try

to

> keep you all better informed.

>

> Gentle, tender, angel hugs,

>

> As ever,

>

> Deb

[Guest guest]

Hi ,

My son has not yet seen Dr. G, we are scheduled to see him. My son

was diagnosed last fall and I scoured the internet to find answers

and to put it simply, when I looked at the science behind the

protocol it made perfect sense to me (it was the first thing). I

believe that many questions that you have on comparing alternative

medicines to the protocol can be answered if you go to the

neurimmunedr link and then go to conference, register, and then look

in the archives under the " ask Dr. Goldberg " column. That is where I

found some of my best answers.

My only regret is that I didn't find sooner.

Best of Luck,

P.S. Don't be discouraged by the waiting list ask to be put on the

cancellation list.

> Hi everyone,

> I am a parent of a child who has autism. I would like to know why

> you have chosen to go this route instead of other therapies such as

> chelation? I do not want this to turn into a debate. I am just

> trying to help my son, and find the best biomedical approach for

> him. Any helpful responses are appreciated.

> Thank you,

>

[Guest guest]

Hi ,

Thanks for your inquiry. This way is safe, sensible, simple, effective, and

less costly than most. My family has an array of these disorders and we've

been trying what's out there for the past 10 years. this is the only medical

intervention that has had real positive, permanent results.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Hi

I would highly recommend you review Dr G's websites: neuroimmunedr.com and

.net. You will find several articles regarding autism and the immune

connection. Dr G also has an " Ask Dr G " section in the Conference area that

will offer many reasons for why we choose his protocol.

Happy reading/research.

Suzanne

PS, I personally believe my son was presenting autistic like symptoms as a

direct result of my maternal immune system being dysfunctional. I found out

after Nick's birth that I had Hashimoto's, an autoimmune condition of the

thyroid gland. My son received casein for two years before I read an

article stating casein may be irritating his already taxed immune system.

AND then there are the vaccinations, don't get me started. Again, I made

the connection to Dr G personally because of the strong auto-immune

connection between my condition and my son's.

I must alo report that my son has made tremendous progress. Feel free to

email me privately.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Pj

A big heartfelt welcome to you. Do not wait for the doctors to advise you to do

any further. Go ahead and start seeking out help. I listened and trusted my

regular pediatrician when he kept telling me to wait another few months with my

son. I did and I feel like I lost some valuable time in getting help. My son

is almost 2 1/2 and now is the BEST time to be doing anything. Trust your gut

instinct. A mother usually knows more of what is going on with a child better

than anyone else. Forgive me for saying this but, if your are here in the group

asking questions, then your instincts are already guiding you. Listen to them

Welcome- I am fairly new to the group too. I have found everyone here to be

very helpful and welcoming. You will learn alot I am sure.

Stacey

i'm unsure how I actually ended up signing up for this group -I was

sent an email inviting me to join, so bear with me as I try to crash

course myself on apraxia.

I'm PJ, and my son (2 1/2) IS a late talker. He is in a special

preschool two days a week, attends occupational therapy once a week,

(to address some gross and fine motor skills problems), and speech

therapy once a week.

As yet they haven't " diagnosed " him with anything, but the more the

shrug their shoulders the more it bugs me. I'm happy he's getting

intervention, but starting to be concerned that they are blowing off

somethign that COULD be a big problem later. So, tell me is there a

way to know if this is just a minor developmental delay or if I

should be seeking further opinions?

PJ

[Guest guest]

Dear PJ,

I was where you are now about 10 months ago. My son

Jack 2 1/2 has oral Apraxia, SI and mild PDD. He

started Early Intervention when he was 18 months and I

knew even then he was not just a late talker. I went

ahead and called Boston Children's hospital and made

an appointment with an SLP there who was the one who

told me abut Apraxia. He was not cooroperative that

day so she told me to have another eval. done outside

of EI. I went to a developmental Pediatrican, SLP, and

PT they agreed it was apraxia and I also went to a

developmental Psychologist who diagnosed Jack with

PDD-nos.

I trusted my instinct and brought him somewhere else

to find out what the problem was. I just new it was

not a speech delay which is what Early intervention

told me.

Even if your son is just a late talker it will not

hurt him to take him to someone else to have some more

opinions.

I am so glad I did what I did concerning JAck because

if I had trusted everyone else except myself who knows

where we would be now.

He is receiving appropriate therapy for his issues and

is making wonderful progress. Using 3-4 word

sentences!!

The fact is you are a wonderful parent who obviously

cares for your son, or you wouldn't be finding answers

and asking questions. Shruging shoulders is not

helping your son and does not help anyones child. Keep

asking questions and know that you are doing what is

best for him.

Good luck,

Sincerely,

Eileen

--- capnkiwi <capnkiwi@...> wrote:

> i'm unsure how I actually ended up signing up for

> this group -I was

> sent an email inviting me to join, so bear with me

> as I try to crash

> course myself on apraxia.

>

> I'm PJ, and my son (2 1/2) IS a late talker. He is

> in a special

> preschool two days a week, attends occupational

> therapy once a week,

> (to address some gross and fine motor skills

> problems), and speech

> therapy once a week.

>

> As yet they haven't " diagnosed " him with anything,

> but the more the

> shrug their shoulders the more it bugs me. I'm

> happy he's getting

> intervention, but starting to be concerned that they

> are blowing off

> somethign that COULD be a big problem later. So,

> tell me is there a

> way to know if this is just a minor developmental

> delay or if I

> should be seeking further opinions?

>

> PJ

>

>

>

__________________________________________________

[Guest guest]

Barbara that is awesome- so glad to hear the good news pretty soon Korben

will be free:-)

Beck

[Guest guest]

Barbara:

That's great! The final month really does fly by. I thought it

would drag on forever, but it didn't. Thanks for the great news.

Debbie Abby's mom DOCGrad

MI

> HELLO!!! HOW IS EVERYONE TODAY? WELL WE TOOK KORBEN TO CT IN

DALLAS

> TODAY AND THEY TOLD US THAT HE HAS 1 MONTH LEFT IN THE DOC BAND.

WE

> HAVE TWO MORE ADJUSTMENTS AND THE FINAL CASTING AND THEN WE ARE

> THROUGH. YEAH!!!!!!!! WELL I THOUGHT THAT I WOULD LET EVERYONE

KNOW

> HOW IT WENT TODAY!!

>

> BARBARA

> MOM OF KORBEN AND MARSHALL

> KORBEN DOC BAND 10-10-01

[Guest guest]

Hey Barb,

That's terrific news! This last month will go by so quickly, before

you know it you'll be posting that Korban has graduated! Yippee!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> HELLO!!! HOW IS EVERYONE TODAY? WELL WE TOOK KORBEN TO CT IN

DALLAS

> TODAY AND THEY TOLD US THAT HE HAS 1 MONTH LEFT IN THE DOC BAND.

WE

> HAVE TWO MORE ADJUSTMENTS AND THE FINAL CASTING AND THEN WE ARE

> THROUGH. YEAH!!!!!!!! WELL I THOUGHT THAT I WOULD LET EVERYONE

KNOW

> HOW IT WENT TODAY!!

>

> BARBARA

> MOM OF KORBEN AND MARSHALL

> KORBEN DOC BAND 10-10-01

[Guest guest]

Barbara,

Great news about Korben graduating in a month. Those weeks will fly by!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi ,

Nice to hear from you, and thanks for the welcome.

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

> Hi Suzanne and welcome to the list. My name is and I think maybe I

am > the token guy on the list as women usually get RA more often than

> guys. Anyway, I was initially started on 60 mg of Prednisone and am also

> on Celebrex. I slowly had to decrease the Prednisone to get off it, too,

> but no one told me it would take 13 months, though! I finally got off of

> it December 1. I also started on Methotrexate last year and I am thinking

> it takes a couple of months to build up in your system. Now I feel great,

> if I didn't know better I'd say I was getting better (NOT). I am also

> taking folic acid with the Metho, which you should be too, as a defense

> against some of the possible side effects of the Metho, mainly mouth

sores.

You started on a pretty high dosage of prednisone, compared to me. Have you

been sick for a long time, or just much worse symptoms, I wonder? I can't

say, after 2 treatments with methotrexate, that I really notice any change

in the way I feel. The closest I might come, is that the day after I take

it (I take it Friday nights), I feel *really really good* on Saturday. Like

I could take on the world good. This past Saturday I headed for the gym as I

always do, jumped up on the treatmill, walked 12 min, jumped on the

stationary bike for 5 min, then went off to the pool and hot tub for the

next 30 min. At the time, it felt great. Later that afternoon, I had pain

in my shoulders, arms and wrists/hands like I hadn't since I first started

the medications. Did I overdo it? or coincidence? Who knows. By Sunday, I

was pretty much back to " normal " . I'll take this return to more strenuous

exercise a little slower, I think. What does everyone here do for exercise?

Are certain exercises better than others?

>

> I was weaning off the Prednisone so slowly that when I finally got off it

> after taking Methotrexate for months, I didn't notice any problems. I am

> currently taking 8 2.5 mg tabs weekly which some have said is a lot but

> at my last rheumatologist vist a few weeks ago he said I am doing

> extraordinarily well and better than he expected.

I'm taking 3 - 2.5 mg of methotrexate weekly. I've heard 3 - 5 months, to

6 - 8 months, before I'll notice a difference. Does that jive with others

here?

>The only problem is that

> it is possible at some point for the treatment to not be effective anymore

> and then they have to try and find something else which will work. So I

am

> making hay while the sun shines, as they say, and trying to get my

basement

> remodeled so I can build my big model railroad set up which is my hobby

and > passion.

This is wonderful!! No sense in worrying in advance what might happen down

the road. I say seize the day! The positive effects of feeling good again

and doing something your have a passion for is the best medicine in my book

and makes life worth living. We'll all have to deal with " what to do next " ,

if and when symptoms worsen.

> As far as the Prednisone causing weight gain I can't say for sure because,

> in my case I am a Type-2 diabetic and had to start taking insulin because

> the Prednisone throws off you blood sugar so much. I gained about 30

> pounds or sosince but the doctor said that was because of the insulin and

> not the Prednisone.

Were you diabetic, or leaning that way before your treatment with

prednisone? I'm not anxious to have a new complication enter my life...

> As for the tiredness, I have read and heard that fighting the pain and

> the RA causes fatigue. At the time I wasn't feeling tired, I thought, I

> just didn't feel like doing anything and moped around the house. But I

> would fall asleep watching TV or reading the newspaper, then I couldn't

> sleep at night.

This sounds so familiar!! I could have written it. I have been fighting

fatigue for about 1 1/2 years. I have been ignoring it, and pushing myself

when all I wanted to do was stop and take a nap. I had 1/2 my thyroid

taken out a year ago last November. Prior to that, I still had energy

galore. I have blamed my lack of energy on everything, the surgery, the

anesthesia, my reduction of exercising twice a day (prior to surgery I

started my day at the gym, then after work, ended my day there too.), my

thyroid being out of whack (which it isn't), I've run out of things to

blame.

Maybe it is what it is. An immune system working overtime and a stubborn

person trying to ignore her frailities.

> The rheumatologist says that was from the RA. I still get

> tired in the afternoon some time after lunch and have to take a short

> nap. If I try to ignore it the tiredness doesn't seem to go away. I

don't know at this point if I really need to sleep or if I have just gotten

into

> a bad habit.

> The rheumatologist says sometimes the RA goes into remission and he thinks

> maybe that is where I am right now. It's kind of like having a little

> time bomb in your body that you never know when it might go off.

Good analogy. That's how it feels to me to, in this beginning of trying to

understand and live with this disease. But we have to go on, enjoy life to

its fullest and be grateful for whatever time we are given to feel good.

Lots of medical breakthroughs are happening everyday, especially since the

most recent information on genes and dna.

> I also am in the process of trying to get Social Security Disability

> Insurance but I am starting to have my doubts. I definetely qualified

> when all this started but am starting to think that now I don't because of

the

> treatment. The person who convinced me to sign up and that I qualified

> gave the impression that basically I had it, it was on their list of

> " impairments " , and all I had to do was prove I had it. NOT - I was

> informed through another list which deals with disability that thousands

> of people have RA and continue to work. I have to basically prove that it

> keeps me from doing ANY kind of work in the national ecomony, which at

> the moment it doesn't. I think instead of disability insurance they

should

> call it " total unemployability insurance " which would be a lot more

> accurate and keep a lot of confused people from thinking they

> qualify. That's government stuff for you.

What kind of work did you do before you had to stop? It's wonderful that

you are feeling so well. I've got my fingers crossed for you. I like being

out in the workforce, I hope I can find a way to stay there for the next 10

years. I had tentatively planned to file for soc. sec. retirement at 62, go

into the City's DROP program and work or not, depending on my health for up

to another 5 years.

> You have found a good and helpful list here and if you have any questions

> just ask. I am still learnig about this disease and there is a lot of

> knowledgeable help and experience here. Welcome aboard!

Thanks for your story and your welcome. Stay in touch and tell us how you're

doing/feeling.

Suzanne