Thanks!

[Guest guest]

Annette,

Thank you for the nice note of encouragement. I really appreicate the love

and support that I get from this group. I will keep you in my prayers as

well. This is indeed the hardest thing I've had to go through in the pain

department. The depression can get overwhelming at times.

Amy Deel

[Guest guest]

PubMed medline queryKay, Thank you these are great. I really appreciate

everyones help! Meg

[Guest guest]

Gigi!!

We saw Dr. Hamilton!! We live in Calgary!

What do you want to know? He'll probably spend about 30 seconds with you. He seems nice, but I think the nurses basically do the work. He'll tell you whether or not Quinn needs a band (if you have made it past , he is likely a candidate), and will ask if you want to go for it. Then you will be sent to another part of the hospital where you will talk to a woman who will book a casting appt. for you. She seems grouchy (if it's the same girl), but I think she's just shy.

It will probably take about 2 weeks to get in for the casting, then another 2 weeks after the casting to get the band.

If you have any other questions, I'd be glad to help! )

Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/

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

From: glarw@...

Plagiocephaly

Sent: Wednesday, September 26, 2001 12:05 PM

Subject: Thanks!

Thanks Debbie & Karla. I needed the support. I have no one I can really talk to about this. Except my husband. I was wondering if there is anyone who has seen Dr. Hamilton in Calgary. We will be seeing him next week and was wondering what to expect. (this is our first visit) I'd appreciate any advice. Gigi Quinn's mom Calgary, ABFor more plagio info

[Guest guest]

Hi All

I've been sitting on the side-lines the last couple of

weeks reading your postings and getting courage and

support from your chat. Thank you for this and for

the message that hey there is life after transplants!

I have had AIH for 10+ years and have finally taken

the plunge to put myself on the liver transplant list

- after 6 months of a lot of looking at things and a

lot of " we would highly recommend you go on the list "

talks from the medico's.

I don't know what it is about it that I find

frightening ... I guess maybe the thought is " hey this

is for life " . I'm also loosing control of the

situation - believing that I could control this damn

thing but ... its now out of my hands. And I have to

let go.

Some of the things I've been going thru in the past by

myself like the foggy brain drain I thought was just

me. None of my doctors or specialist for that matter

ever said that this is what happens as a result ie

acites and the foggy brain thing and this is what you

shouldn't do (like not eat a lot of fried fatty food).

A lot of the info I've learnt from hard experience or

from reading books and recently re-looking at AIH on

the net(thank goodness for the net!) and by actually

realising that I'm not alone with this shitty disease.

Thanks for your help and your words.

Till next time.

Carol

(casheb@...)

http://movies..au - Movies

- Vote for your nominees in our online s pool.

[Guest guest]

carol, stay with us now that you have emerged...Good to have a new

member;welcome

Patty

Re: [ ] Thanks!

Hi All

I've been sitting on the side-lines the last couple of

weeks reading your postings and getting courage and

support from your chat. Thank you for this and for

the message that hey there is life after transplants!

I have had AIH for 10+ years and have finally taken

the plunge to put myself on the liver transplant list

- after 6 months of a lot of looking at things and a

lot of " we would highly recommend you go on the list "

talks from the medico's.

I don't know what it is about it that I find

frightening ... I guess maybe the thought is " hey this

is for life " . I'm also loosing control of the

situation - believing that I could control this damn

thing but ... its now out of my hands. And I have to

let go.

Some of the things I've been going thru in the past by

myself like the foggy brain drain I thought was just

me. None of my doctors or specialist for that matter

ever said that this is what happens as a result ie

acites and the foggy brain thing and this is what you

shouldn't do (like not eat a lot of fried fatty food).

A lot of the info I've learnt from hard experience or

from reading books and recently re-looking at AIH on

the net(thank goodness for the net!) and by actually

realising that I'm not alone with this shitty disease.

Thanks for your help and your words.

Till next time.

Carol

(casheb@...)

http://movies..au - Movies

- Vote for your nominees in our online s pool.

[Guest guest]

Charlotte please stick around and let us know how your appointment goes- June

is just around the corner and we are all interested in what they have to say!

beck Mom to

Memphis, TN

[Guest guest]

Charlotte:

I am happy to hear you were able to make an appt with a specialist.

Please let us know how that appt goes. Good luck.

Debbie Abby's mom DOCGrad

MI

> I received so many helpful responses to my post about my adopted

> daughter. Amazing. I thank all of you for being so willing to share

> your knowledge and experiences. We were able to make a consultation

> appointment at All Children's Hospital in St. sburg, FL for

> early June without a referral from our pediatrician.

> Best wishes,

> Charlotte

[Guest guest]

Fatigue that is not relieved by rest is just one of the realities of

this disease for many. I think that it probably isn't all due to

inadequate or improper sleep, but rather to whatever it is that's

keeping our whole metabolism low and sluggish. Not sleeping well or

deeply enough certainly does make it worse though.

E.

>Thanks for all the info and advice on sleep disorders. After seeing

>how many of you are affected with various sleep disorders, I will

>definately go to my doctor and see if I can get tested for sleep

>apnea. I just sleep and sleep and sleep and when I get up I'm so

>exhausted I can barely stand. Hopefully this is the solution to that

>problem!

>

>Jen.

[Guest guest]

I am a relatively new member to the web group and wanted to thank you

for taking such good care of it.

My 22-month-old grandson has been preliminarily diagnosed with

apraxia.

As he was always an OVERLY quiet child, I suspected there might be

something wrong and jumped at the chance to support my daughter any

time she mentioned tests or therapy.

When she was informed of potential apraxia, I searched the web for

information and was guided to your group.

I've spent the better part of my breaks at work each day going

through the e-mails and absorbing and sharing as much as possible

with my daughter.

She finally spoke to a developmental pediatrician today and he

suggested she try the limited -gluten diet and EFA supplements as

discussed by your group.

I can not begin to thank you AND the other group participants enough

for helping to inform this grandma and help keep her daughter and

grandson on the right track.

[Guest guest]

-

Amen to you, your daughter and your grandson's developmental ped. It

is so great to hear that he has wonderful people and family working

and keeping an open mind to all possibilities of treatment including

Supplementation and diet!! Congrats and welecome!

Eileen mom to Jack 3.3 oral apraxia and DSI and 1.9

-- In @y..., " Melonie " <vondreele@y...> wrote:

> I am a relatively new member to the web group and wanted to thank

you

> for taking such good care of it.

>

> My 22-month-old grandson has been preliminarily diagnosed with

> apraxia.

>

> As he was always an OVERLY quiet child, I suspected there might be

> something wrong and jumped at the chance to support my daughter any

> time she mentioned tests or therapy.

>

> When she was informed of potential apraxia, I searched the web for

> information and was guided to your group.

>

> I've spent the better part of my breaks at work each day going

> through the e-mails and absorbing and sharing as much as possible

> with my daughter.

>

> She finally spoke to a developmental pediatrician today and he

> suggested she try the limited -gluten diet and EFA supplements as

> discussed by your group.

>

> I can not begin to thank you AND the other group participants

enough

> for helping to inform this grandma and help keep her daughter and

> grandson on the right track.

[Guest guest]

Kerry-

Good luck at your appointment!

I don't know if someone gave you this before, but a lot of our UK

parents see Dr. Blecher. Here is his website:

http://www.cranio-online.de/index_engl.html#

Many parents have emailed him and heard back very quickly!

Good luck and keep us posted!

Dane's mom DOC Grad

[Guest guest]

> Kerry-

> Good luck at your appointment!

> I don't know if someone gave you this before, but a lot of our UK

> parents see Dr. Blecher. Here is his website:

> http://www.cranio-online.de/index_engl.html#

> Many parents have emailed him and heard back very quickly!

> Good luck and keep us posted!

>

> Dane's mom DOC Grad

Thanks for that , that's great, I'll be checking that out.

Kerry

[Guest guest]

Thank you. Thank you for this info!

Measles, CMV (and other herpesviruses), S. Cerevisiae and some

mycobacteria have been found in the gut tissue of patients with IBD,

so this is helpful to me in searching for causes, answers, and the

mercury connection. My son had major disease activity four years ago

requiring an intestinal re-section (I guess. Don't know if it could

have been handled otherwise.) They found e-coli and CMV.

Doctors keep trying to suppress symptoms and depress the immune

system, instead of looking for real answers. We had a major go-

around with a doctor yesterday - not my son, but my neighbor's son.

Doctors want to re-sect him. They don't bother to look for

infections, and WE suggested they give the kid anti-bacterials. They

refused at first, even tho' there is obvious (seeping) infection.

There was one particular case where the doctors were ready to remove

the entire colon and someone decided to pursue anti-viral therapy

first. Cleared up the problem. Saved the colon.

-- In , " andrewhallcutler "

<AndyCutler@a...> wrote:

> I ran across some interesting material in Kuby's Immunology

textbook

> third edition, page 515) which I will quote:

>

> ...

>

> " ... defects in the cell-mediated system are associated with

> increased susceptibility to viral, protozoan, and fungal

infections.

> Ingracellular pathogens such as Candida albicans, Pneumocystis

> carninii and Mycobacteria are often implicated, reflecting the

> imporance of T cells in eliminating intracellular pathogens.

> Infections with viruses that are rarely pathogenic for the normal

> individual (such as cytomegalovirus or even an attenuated measles

> virus) may be life-threatening for those with impaired cell-

mediated

> immunity. "

>

> Mercury does mess up the T cells, and there has been some

discussion

> on the board and some privately with me regarding things like the

> balance of TH1 and TH2 activity in autism.

>

> I think this basic immunology lends support to a connection between

> mercury causing immunologic impairment, and then the attenuated

> measles virus (which is in a vaccine that does not contain

thimerosal)

> setting up shop permanently in the toxic children as observed by

Andy

> Wakefield even though the other children clear it

[Guest guest]

Jackie,

It's hard for others to really understand what we go through especially when

we LOOK so healthy. Don't worry, you'll get plenty of understanding here.

Fatigue is a major problem and I can't say it will go away, but some days

may be better than others. You're on the right track with exercise. It

makes a big difference in the way I feel. It may seem backwards that

exercising when we're already so tired can make a difference, but it does.

At first you may feel more fatigued, but don't give up.

As far as the best exercise, it is different for all of us depending on what

joints are affected. If a joint is flaring, it's best to rest it and just

try to do gentle range of motion exercises. Moving it will help push the

fluid out of the joint. My ankles and one elbow is my worse joints. I do

water exercises and chair exercises. I start my day in bed with doing

gentle stretches and then I have a routine I do while laying in bed.

I put music on and try to move to the music. Chair dancing is fun!

Just take it slow and easy and try to do more each day. If you do to much

it will cause more pain and then you'll be less inclined to continue.

Good luck!

a

> Although I am a new member, I want to thank you for the responses to

> my posts. It is very exciting for me to talk with people who feel

> the same as I do. I don't think my husband truly understands how I

> am feeling although he doesn't complain. Sometimes I think he is

> just frustrated that all I really do is lay around and rest. I am

> extremely fatigued. Does it ever go away and does anything help? I

> am hoping to lose quite a bit of weight and started watching what I

> eat at the beginning of this week. No loss yet. Hopefully I will be

> able to start swimming this summer. It is just hard to get up and do

> it. Does anyone have any other ideas for exercising? Thanks again,

> everone. Jackie

>

[Guest guest]

You're most welcome, Dawn!

Glad to hear that you have a good rheumatologist. Sorry that you've had

RA for so much of your young life.

I'm 44, divorced for two years, and a stay-at-home mother of three:

(19), (16), and (11). We live in a large suburb

about 35 miles west of Chicago, IL.

I've always been very healthy and physically active, but in the fall of

1996, arthritis and fatigue hit me big time. Prior to that, although I

didn't realize what they were, I had been suffering Raynaud's attacks.

After a lot of trips to internists, rheumatologists, and even Mayo

Clinic, my diagnosis is still uncertain. Polyarthritis and some sort of

mild connective tissue disease is something that most docs would agree

on. One gave me an RA diagnosis, others wondered if Hashimoto's

thyroiditis or lupus or Sjogren's could be my problem.

I have abnormal labs and symptoms that don't fit very neatly into any

category yet. I'm lucky that nothing is too severe. It's annoying not to

know, but I am grateful that whatever it is just simmering.

My kids are my #1 priority, but I enjoy working in the garden when I

can, and, of course, spending time with this group. I read a lot of

medical journals and books. My so-called life, LOL!

Thanks for asking,

[ ] Thanks!

> ,

> Thanks for the birthday wish and the e-mail! To answer the

questions

> you had for me: I was diagnosed with Arthritis in May 1997, just

before my

> 24th birthday. I am currently on Methotrexate, Enbrel, Naproxen, and

Folic

> Acid. Thankfully, I have a wonderful rheumy that works well with me

and my

> treatment.

> Please tell me more about yourself: treatments(both good and

bad), when you were diagnosed, hobbies, family, anything! Sometimes

Arthritis can seem so lonely and alienating! Talk to you soon!

[Guest guest]

Hi Amy:

You're more than welcome We're happy you found us as well, too

bad you didn't find us a few mos ago huh? Better late than never.

I've been with this group 3 yrs now, time sure does fly!

That's great 's headshape has shown correction Which CT

are you going to? You said you were in TX, so I'm assuming the one

in The Woodlands is it?? They have another clinic in Dallas. They

don't have anyone else in your office while your OT is off?

Debbie Abby's mom DOCGrad

MI

> Hello and thanks.

>

> has been wearing his doc band for about 3 months. He was

doing

> so great until we had this skin problem. He adjusted to wearing it

so

> fast and starting sleeping through the night in a few days. He

tugs

> at it now and then but mostly forget about it. It has been helpful

> since he is learning to walk! He is 14 months old now. We were

told

> by our pediatrician at 9 months to see a specialist about his flat

> spot. He has a flat spot on the back of his head from sleeping on

his

> back so much. We had tried to get him on his tummy more but he is

> used to sleeping on his back! We were lucky to get the doc band

> within a couple of weeks. The cranial plastic surgeon told us to

get

> the doc band on asap because of his age. The orthotics company got

us

> the doc band really quickly. So far 's head shape has

improved

> already!! His head was really round and is now more oval shaped.

His

> head was also too wide as well as the flat spot in back. The flat

> spot in back will take longer to round out. He is to wear the

helmet

> 2 to 3 more months for that. I just hope we can get this skin

problem

> cleared up! I will let you know if it works!

>

> How long have you been in this group? I am so excited to find out

so

> much help. I feel like I have been on my own through this whole

> process! The tech I see has been busy and a little preoccupied.

His

> wife is being induced for the birth of their child on Monday. We

> won't be able to go for our fitting until next week. He will be

out

> on vacation to be with his family. I am happy for him, but wish we

> could see another tech. But he wants to do the fittings himself.

>

> Amy

>

> Amy

[Guest guest]

Hello Debbie,

Yes we go to the location in the Woodlands. Our orthotist wanted to see us himself. I guess we will have to wait. Or maybe we could go to the downtown Houston location. I could call and check.

How is your Abby doing?

AmyDebbie <dj2kirby@...> wrote:

Hi Amy:You're more than welcome We're happy you found us as well, too bad you didn't find us a few mos ago huh? Better late than never.I've been with this group 3 yrs now, time sure does fly!That's great 's headshape has shown correction Which CT are you going to? You said you were in TX, so I'm assuming the one in The Woodlands is it?? They have another clinic in Dallas. They don't have anyone else in your office while your OT is off? Debbie Abby's mom DOCGradMI> Hello and thanks. > > has been wearing his doc band for about 3 months. He was doing > so great until we had this skin problem. He adjusted to wearing it so > fast and starting sleeping through the night in

a few days. He tugs > at it now and then but mostly forget about it. It has been helpful > since he is learning to walk! He is 14 months old now. We were told > by our pediatrician at 9 months to see a specialist about his flat > spot. He has a flat spot on the back of his head from sleeping on his > back so much. We had tried to get him on his tummy more but he is > used to sleeping on his back! We were lucky to get the doc band > within a couple of weeks. The cranial plastic surgeon told us to get > the doc band on asap because of his age. The orthotics company got us > the doc band really quickly. So far 's head shape has improved > already!! His head was really round and is now more oval shaped. His > head was also too wide as well as the flat spot in back. The flat > spot in back will take longer to round out. He is to wear the helmet > 2 to 3 more

months for that. I just hope we can get this skin problem > cleared up! I will let you know if it works! > > How long have you been in this group? I am so excited to find out so > much help. I feel like I have been on my own through this whole > process! The tech I see has been busy and a little preoccupied. His > wife is being induced for the birth of their child on Monday. We > won't be able to go for our fitting until next week. He will be out > on vacation to be with his family. I am happy for him, but wish we > could see another tech. But he wants to do the fittings himself. > > Amy> > AmyFor more plagio info

[Guest guest]

>>>Are you encouraging people to keep track of their experiences in a

certain format? I'm certainly willing to share if it's going to

continue to be helpful.

I like to keep up with experiences whether positive, negative, or no

change. But there isn't a particular format. It is because of people

honestly sharing what is going on, and a bit of research and

analysis, that good guidelines and ideas are here to pass along.

>>>> Really appreciate the great resource you folks are providing.

Your welcome. We've pretty much all been there.

.

[Guest guest]

> Thanks so much for all your very valuable input. I'm going to start

> Henry on No Fenol tomorrow. Are you encouraging people to keep

> track of their experiences in a certain format?

Keeping a journal is a good thing. Write down things he eats,

supplements and medications you give [dose and time], bms, behaviors,

therapies, whether he had a good/bad day, anything you believe is

relevant. Many times you can find correlations to help you determine

which things are helping, which are not helping, and which might be

causing problems.

Dana

[Guest guest]

I was just about to write a similar message. I just really appreciate having

somewhere to turn for my questions. I ordered 's book today. I have flipped

through a friend's and immediately jumped online to order my own copy! I know I

won't want to put it down! Thanks again to all who have helped me with my

questions.

~ Dunsmore

Lori Getz <lorijeangetz@...> wrote:

Hi Dana, and all!-

Thanks for your reply and your seemingly boundless energy to answer all the

emails! I really appreciate how you share your knowledge.

__________________________________________________

[Guest guest]

Your document is attached.

[Guest guest]

Dear ,

It does my heart so much good to know some one could find use

from my experience and (long- winded) writings! Thank you for saying

so, and by all means, copy and disperse some if you think it might

help others. I am considering writing a book (maybe a pipe-dream...),

so please, I ask to just make sure my name is on your copy somewhere.

And please feel free to email me anytime- I promise to answer! And

will be glad for the company.

Love and hugs,

--- In , C Simms <kcrawfords@s...>

wrote:

> To :

>

> " Here are a few thoughts from someone who's been dealing with these

> illnesses from " both sides of the fence " for a long time. "

>

> Thank you so much for sharing your insight and advice and wisdom.

I'm 38, have been living w/ RA, Fibro and essential tremors for over

a year and this was the best summary of how to approach the disease

(and how it affects the self) that I've read.

>

> I'm printing it off and using it a blue print.

>

> Again, thank you.

>

> Would you (and others) share other coping strategies you use. (I'm

especially interested in hearing about the strategies you've used

that help you build/find support to help you deal with the disease)

>

> Thanks again and to everyone who shares so much of themselves on

this list.

>

> (IL)

>

>

>

>

>

[Guest guest]

Dear ,

It does my heart so much good to know some one could find use

from my experience and (long- winded) writings! Thank you for saying

so, and by all means, copy and disperse some if you think it might

help others. I am considering writing a book (maybe a pipe-dream...),

so please, I ask to just make sure my name is on your copy somewhere.

And please feel free to email me anytime- I promise to answer! And

will be glad for the company.

Love and hugs,

> To :

>

> " Here are a few thoughts from someone who's been dealing with these

> illnesses from " both sides of the fence " for a long time. "

>

> Thank you so much for sharing your insight and advice and wisdom.

I'm 38, have been living w/ RA, Fibro and essential tremors for over

a year and this was the best summary of how to approach the disease

(and how it affects the self) that I've read.

>

> I'm printing it off and using it a blue print.

>

> Again, thank you.

>

> Would you (and others) share other coping strategies you use. (I'm

especially interested in hearing about the strategies you've used

that help you build/find support to help you deal with the disease)

>

> Thanks again and to everyone who shares so much of themselves on

this list.

>

> (IL)

>

>

>

>

>

[Guest guest]

Forgot to add: Looking at the Recipe file might give you more ideas of

menus!

Fran

[Guest guest]

,

You're very welcome! We're happy to have you w/us.

> Hi, everyone.

> I just wanted to say thank you for all of your kind replies to the

Andy

> update I posted. You are all so very nice and I'm glad to have found

> you for your warmth, support and encouragement. Thanks for giving us

> worried moms a place to vent and find comfort.

>

> mom of Andy and Ella, 8 mos.