Re: (unknown)

[Guest guest]

On 3 Aug 2004 at 19:41, wrote:

> Naturally with Madison in her cast, I am home all day

> with her.

So serial casting is only good for people who have one stay at

home parent?

Nola

[Guest guest]

> Does it really matter since you aren't an advocate of casting anyway?

I don't believe I have said that I am not an advocate of casting...I do not know enough about it to say one way or the other. I have read the articles that are posted about it online at the site, and I'm left with a lot of unanswered questions. I don't want purely ancedotal information from parents only; I also need to see reports about it. In addition, I do NOT need to feel guilty about a treatment that I have been doing for my daughter for quite some time, especially when it's one that, compared to similar treatments for similar children, is responding very well. And when I am told that I am missing the point and am against casting, or that what I have stated about my daughter's case couldn't be true, I feel attacked and thus not open to what other people are saying about a procedure. I want to understand it, I want to read about it, and I want communication with other parents who have children going through similar disorders.

When I first joined this list, one of the first things I can recall reading about was the ability of casting to correct curves after three years of age being poor; my daughter was four at the time. Was this incorrect information? Perhaps I will go back and read archives from that time. I chose to stay, thinking I wasn't going to be much good with helping other parents with casting procedures, but desperately needing to be around other parents who have children with infantile idiopathic scoliosis. The other mailing lists that I have found have virtually no activity; I'm on three or four and one post will come though every two weeks, if that. I don't want to join lists that are filled with adolescent cases, because I believe infantile idiopathic scoliosis and adolescent scoliosis have different etiologies.

Nola

[Guest guest]

Nola,

I spoke with Dr. Mehta 2 weeks ago and she told me that a child can grow straight in a plaster jacket at 3 and 4 she said the treatment will just take longer then a young baby. Also a young baby in the early stages of Scoliosis has an excellent chance of growing straight because the bones are still so soft. The older the child is the longer the treatment.

In Belgium they are doing this with children of all different ages from infants to teenagers with great results. If you would just watch the video you will understand why we are all so fired up about this. Just watch it, said she will send it to you for free.

Crista

[Guest guest]

Hi ,

Ramble on!!! How ya doing now??? Take care

((( Caring Hugs )))

Helen

I haven't really posted in the past week or so....not because I don't have any news but I've been busy....I was in the hospital for a few days....I guess my eating problem is a big deal...I was sick last Wednesday and didn't eat and on Thursday I passed out...my mom made me go to the hospital and my doctor gave me an IV and kept me in the hospital until Sunday...while I was there I had to attend an eating disorder group...not fun at all............but I've come a long way...I can almost admit to myself that I have a serious problem....my doctor made a chart of my weight and stuff...I lost 17 pounds in less than two weeks....that's not good...he said if I was going to lost weight it should be a few pounds every few weeks...but he wants me to not lose anymore...he would probably make me go back in the hospital or to a program if I lost much more...I'm not skinny skinny or anything ....I'm actually over my ideal weight but not much.....my doctor wants me to be healthy and he thinks if I lost much more weight then I won't be healthy because of my eating habits.......I have weird eating issues ...I know this....but it mainly centers on the fact that I hate my body......but when I was younger I ate a lot and people always said 'oh you'll get fat'...I didn't care....then when my dad left I thought 'if I was perfect he would stay'...'if I were skinny he would stay'......my mom's first 'bad' boyfriend sorta liked my body(curvy...developed early)....he commented about it and I started to want to change my appearance and so I wouldn't eat...or I'd throw up food....it helped a little....my mom got the second 'bad' boyfriend and he was the one who abused me....I blamed myself....I blamed my body....I blamed his behavior on everything but him.....I thought if I was skinny and less curvy then he wouldn't do the things he did....I'm beginning to understand that I'm wrong in that thinkingI am a little scared though right now....my mom is slowly getting better...she finished her radiation treatments and just got an injection of stuff the other day.....it's rough...my mom lost her house a short while ago and is now moving to an apt.....which she wants me to move in with her...but I'm still in a weird place in my mind about things....I like living at my aunt's...but with college starting in the fall it would be difficult to get to school from my aunt's....but then some people keep saying that my mom uses me too much...that I do too much for everyone....that I should be almost selfish...that I should take care of myself first...and then help others second....that's not how I do things....but I guess I need to start being selfish..........anyways....I'm a little scared...my doctor wants to run some tests....because my mom was young when she got breast cancer and now she has cancer again...bone mets....I forget what it's called....my doctor just wants to check things I guess....but I'm young...I can't have cancer...I keep telling myself that....but my doctor assured me that it's just a precaution......but my grandma died of cancer....my uncle died sortof from cancer(he was mugged by a 'friend' and was in the hospital and they had found cancer)...they couldn't treat him......my great grandma just died....but she wasn't sick ..she was just getting old...she was almost 92 .......I guess I'm just freaked out about tests and stuff....I don't want the doctor to tell me that I have cancer....I know that young people get cancer too....but I'm scared.....although it's weird...I've been more scared for my mom than I seem to be for myselfI rambled....but I just needed to I guess

[Guest guest]

Hi Shellie,

When was at 50 degrees I took to a cardiologist and he said he had no heart or lung involvement at that degree. 's son is somewhere between 30-40 degrees, so I doubt lungs would be affected yet. I think I heard that around 60 degrees things start getting affected but I can't remember where I heard that from. Someone correct me if I am wrong.

Crista

[Guest guest]

I never had any respiratory problems as a child; my thoracic curve

measured 60 degrees at 6 months old and progressed to 75 degrees at

the time of my first surgery at the age of ten.

A friend of mine was first diagnosed with idiopathic scoliosis at

the age of 6 with a 45 degree curve; this was left untreated by

incompetent Irish doctors (Ireland was notoriously bad for scoliosis

treatment in the 70s) and her curve reached 115 degrees by the age

of 14. Despite this, she never had any respiratory problems either!

Another friend had congenital scoliosis, diagnosed at 2 years old

with curves of at least 120 degrees.....again, she never had

respiratory probs.

So, whilst curves of 60 degrees plus can cause problems (I've heard

this too), this is not something that will definitely happen. I hope

this helps to reassure you a little

Toni xx

>

>

> Hi Shellie,

> When was at 50 degrees I took to a cardiologist

and he said

> he had no heart or lung involvement at that degree. 's

son is

> somewhere between 30-40 degrees, so I doubt lungs would be

affected yet. I think I

> heard that around 60 degrees things start getting affected but I

can't

> remember where I heard that from. Someone correct me if I am

wrong.

>

> Crista

[Guest guest]

What was that comment about?? Your getting a little off track arent

you Nola? I feel like you are taking EVERY word people say as a

personal attack on you.

>

> > Naturally with Madison in her cast, I am home all day

> > with her.

>

> So serial casting is only good for people who have one stay at

> home parent?

>

> Nola

[Guest guest]

Hey Kellee,

How you doin? Hope you enjoy your stay! =)

Jonathon

(unknown)

> hello i'm new this this group and wanted to say hello. i'm kellee.

>

>

>

>

>

> ===

>

[Guest guest]

If I may be as so bold to ask....what the H*** is this all

about?

Dick

At 05:51 PM 8/10/04, you wrote:

Goodbye everyone and good luck.

It was nice to know you.

Randy

You

Are Loved!

Randall

Hines

[Guest guest]

You have that right!!!!

Dick

At 06:43 PM 8/10/04, you wrote:

Oh

Well...Sh-t Happens!

(unknown)

Goodbye everyone and good luck.

It was nice to know you.

Randy

You Are Loved!

Randall Hines

[Guest guest]

Hi Leanne, yes this is Aly's 1st surgery. She will be 2 in early December just a couple of months older than Ethan. The surgery is permanent and involved cutting from the corners of her eyes toward her nose (each side) to 'open' her eyes horizontally. We were told by her sugeon that this surgery is preferred to be done before the 'sling' surgery.

I will most definately post pic's soon when I'm able.

RE: blepharophimosis Alyssa post surgery update

Congratulations on the success! Hope everything for you continues to go so well!

( 's mom)

-----Original Message-----From: bobjnr [mailto:bobjnr@...] Sent: Monday, August 09, 2004 8:57 PMblepharophimosis Subject: blepharophimosis Alyssa post surgery update

Alyssa has finally had surgery and it went great! She had bilateral Medial Canthoplaste (sp?)

She is only 5 days post op, and we are really pleased with how good she looks. An obvious credit to her surgeon! It doesn't appear to be bothering her much....perhaps more itchy than anything we think! She slept for 2 hours after surgery and woke up her happy self. We've found that she will rub the stitches a little but haven't had any problems. Shes had a couple of nights broken sleep but not particularly unusual for her sleeping habits anyway.

We have pictures which I will post soon if anyone is interested. We've seen her surgeon today for her post-op and have been reassured that it is healing good. It is such a relief to be on the 'other side' of surgery. It was a very long 1 1/2 hours when she was in theatre.

[Guest guest]

Hi and Bob,

When will Alyssa's next surgery be? Will it be when they do the permanent ptosis lift when they take the tissue from the leg usually around 5ish, or when matured enough? Our Dr has decided to do a temp ptosis lift in 6 mths, then the permanent one with the leg tissue around 5 yrs old, and the telecanthus surgery in between? It's amazing all the different procedures and timings that the dr's decide to do surgeries! that's what makes it confusing, because we wonder why someone else is having this procedure 1st, when we were told to have this 1st! so on and so on:) Anyways...Can't wait to see pix...

Leanne

-- Re: blepharophimosis (unknown)

Hi Leanne, yes this is Aly's 1st surgery. She will be 2 in early December just a couple of months older than Ethan. The surgery is permanent and involved cutting from the corners of her eyes toward her nose (each side) to 'open' her eyes horizontally. We were told by her sugeon that this surgery is preferred to be done before the 'sling' surgery.

I will most definately post pic's soon when I'm able.

RE: blepharophimosis Alyssa post surgery update

Congratulations on the success! Hope everything for you continues to go so well!

( 's mom)

-----Original Message-----From: bobjnr [mailto:bobjnr@...] Sent: Monday, August 09, 2004 8:57 PMblepharophimosis Subject: blepharophimosis Alyssa post surgery update

Alyssa has finally had surgery and it went great! She had bilateral Medial Canthoplaste (sp?)

She is only 5 days post op, and we are really pleased with how good she looks. An obvious credit to her surgeon! It doesn't appear to be bothering her much....perhaps more itchy than anything we think! She slept for 2 hours after surgery and woke up her happy self. We've found that she will rub the stitches a little but haven't had any problems. Shes had a couple of nights broken sleep but not particularly unusual for her sleeping habits anyway.

We have pictures which I will post soon if anyone is interested. We've seen her surgeon today for her post-op and have been reassured that it is healing good. It is such a relief to be on the 'other side' of surgery. It was a very long 1 1/2 hours when she was in theatre.

[Guest guest]

Hi Margarete

My health shop told me Stevie had been band from the

u.k. Did you not have a problem with your order,

having Stevie delivered here, and lastly what was the

delivery charge.

Many thanks

McKelvey U.K.

--- Margarete Meier <candidaalbicans2004@...>

wrote:

> Hello ,

>

> Yes, it is based in Germany and funny enough the

> website is in German and French, no idea why also in

> French and not in English.

>

> http://www.medherbs.de/template/index.htm

>

> To see the Stevia products

>

> http://www.medherbs.de/

>

> go to shops and then at the top you have the drop

> down menu, you can choose STEVIA, then choose " alle

> Artikel für Stevia " (all articles with Stevia).

> They have different photos with the products, the

> quantity and the price.

> If you need any help, let me know.

>

> Cheers Margarete

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Congratulations Bill and welcome to the Proud Grandpa Club

Bruce, Proud Grandpa of Brenden

(unknown)

> Hello all...

> I'd like to announce the birth of my first grandson:

> Noah Ethan Clegg, born August 27th at 2:45pm. He weighed in at 6 pounds,

1.5 ounces, and 18.75 inches long. No telling if he is an LP yet (parents

opted to wait and see as opposed to any genetic testing; mom is a psuedo and

sometimes it can take up to two years for physical traits to show up.)

Doesn't matter one bit either way. He's cute as a button and hairy like his

grandpa. Mother and baby are doing GREAT!

> I'll post pictures soon.

> Bill Bradford

> (VERY proud grandpa)

>

>

[Guest guest]

Bill, a huge congratulations from the Hogganclan in Utah! Always such sweetness

in the birth of a grandchild. You have nine more to catch up to us. LOL

-Debi, Jim, Mandy and Hoggan

tslug@... wrote:

Hello all...

I'd like to announce the birth of my first grandson:

Noah Ethan Clegg, born August 27th at 2:45pm. He weighed in at 6 pounds, 1.5

ounces, and 18.75 inches long. No telling if he is an LP yet (parents opted to

wait and see as opposed to any genetic testing; mom is a psuedo and sometimes it

can take up to two years for physical traits to show up.) Doesn't matter one

bit either way. He's cute as a button and hairy like his grandpa. Mother and

baby are doing GREAT!

I'll post pictures soon.

Bill Bradford

(VERY proud grandpa)

[Guest guest]

Congrats Bill,

Great to know you came thru this too, as you sound like a bundle of

fraid nerves there, but glad to hear you made it thru the birth, lol.

Hope this little guy is getting all that attention I assume you're

giving him, great to know everything went well there.

Give that Daughter a hug and kiss, since she did all the work, OK.

Rob Tille

(unknown)

> Hello all...

> I'd like to announce the birth of my first grandson:

> Noah Ethan Clegg, born August 27th at 2:45pm. He weighed in at 6 pounds,

1.5 ounces, and 18.75 inches long. No telling if he is an LP yet (parents

opted to wait and see as opposed to any genetic testing; mom is a psuedo and

sometimes it can take up to two years for physical traits to show up.)

Doesn't matter one bit either way. He's cute as a button and hairy like his

grandpa. Mother and baby are doing GREAT!

> I'll post pictures soon.

> Bill Bradford

> (VERY proud grandpa)

>

>

[Guest guest]

WTG Bill...well daughter of Bill and JUST congratulations to you Bill :-)

Babies are such fun. If you want unconditional love that is where you will find

it ...until they turn into teens! <grin>

Hairy like in little Noah has a beard???? Shave that babe! lol

We have 22 grands and 4 great grand sons.... You have a way to go keep up with

us.

Cheers,

Karolyn and

From: ! (unknown)

Hello all...

I'd like to announce the birth of my first grandson:

Noah Ethan Clegg, born August 27th at 2:45pm. He weighed in at 6 pounds, 1.5

ounces, and 18.75 inches long. No telling if he is an LP yet (parents opted to

wait and see as opposed to any genetic testing; mom is a psuedo and sometimes it

can take up to two years for physical traits to show up.) Doesn't matter one

bit either way. He's cute as a button and hairy like his grandpa. Mother and

baby are doing GREAT!

I'll post pictures soon.

Bill Bradford

(VERY proud grandpa)

[Guest guest]

Shari wrote:

> Hello Everyone,

>

> Does anyone have a weight chart, so I can tell what my weight should

> be? Also do you know of any exercise video or etc I can buy, cause when I

> do exercise I have a hard time doing some of the videos.

There's a height weight chart for those over 44 " (112 cM) at:

http://jbadner.picturepage.net/htwt.html (English units)

http://jbadner.picturepage.net/htwtmetric.html (metric units)

The graphs scanned from the medical paper the above are from are at:

http://jbadner.picturepage.net/htwt1.jpg (under 104 cM (~41 inches)

http://jbadner.picturepage.net/htwt2.jpg (over 104 cM)

The graphs are in metric units.

All the data was derived from a study of both children and adults with

achondroplasia and are from this article:

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uid\

s=8882783 & dopt=Abstract

The Perfect Little Body Workout is a 35-minute tape that emphasizes

low-impact aerobics, starring Pam Prentice, who's an achondroplastic

dwarf. The video is popular with all ages, among both men and women. It

focuses on exercises to prevent back pain and to increase mobility, and

has been approved by members of the LPA Medical Advisory Board. It costs

$29.95 plus $3.50 postage and handling, and is available in VHS and PAL.

To order, send a check to: Pam Prentice; 538 Ironwood Terrace #6;

Sunnyvale, CA 94086.

Judy

[Guest guest]

Dora,

I really think surround sound will be good for us. They can be

gotten for well under $100 and still delvier good sound. I want one

now but the budget will kill me if I do it. LOL

*---* *---* *---* *---* *---*

Friends welcome anytime,

relatives by appointment only.

--sign on house door

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

Dear Zaynab,

Good luck on your new job. I have no tutorials yet on handwriting as no one has

sent any to me yet.

Thanks

Jeanetta

zaynab zaynab <wafasn2@...> wrote:

Dear jeanettas

sorry to reply late.i took the july exam and i passed.

i currently found a job in cvs and i asked you about any help with precsriber

handwriting because i will be working in the retail pharmacy that is why i

searched for any help with that issue

thank you dearly for all your help

zaynab

---------------------------------

Créez gratuitement votre avec 100 Mo de stockage !

Créez votre

Le nouveau Messenger est arrivé ! Découvrez toutes les nouveautés pour

dialoguer instantanément avec vos amis.Téléchargez GRATUITEMENT ici !

[Guest guest]

Hey Hey Hey,

Check your mail, J!!! I sent an e-mail a couple of weeks ago asking if you

still needed copies of rx's. I'm cleaning out an old file cabinet of " on-hold "

rx's and I'll be happy to send them to you (minus private info) if you send me

your address or I can fax them to you if you have a fax #.

Let me know,

--

To love what you do and feel that

it matters - how could anything

be more fun? -- Graham

.. . . for my heart rejoiced in

all my labour . . . Ecclesiastes

2:10

-------------- Original message --------------

> Dear Zaynab,

>

> Good luck on your new job. I have no tutorials yet on handwriting as no one

has

> sent any to me yet.

>

> Thanks

> Jeanetta

>

> zaynab zaynab wrote:

> Dear jeanettas

>

> sorry to reply late.i took the july exam and i passed.

>

> i currently found a job in cvs and i asked you about any help with precsriber

> handwriting because i will be working in the retail pharmacy that is why i

> searched for any help with that issue

>

> thank you dearly for all your help

> zaynab

>

>

> ---------------------------------

> Créez gratuitement votre avec 100 Mo de stockage !

> Créez votre

>

> Le nouveau Messenger est arrivé ! Découvrez toutes les nouveautés pour

> dialoguer instantanément avec vos amis.Téléchargez GRATUITEMENT ici !

>

>

[Guest guest]

Oh my! If this is an exacerbation, it probably started before LDN. LDN has not caused any side effects for me, and I've never heard of it causing all of those symptoms. If you and your husband want to experiment, you could , in my opinion, either stop taking it for a few days OR up the dose to 4.5mg or even 6mg (which is what I do). Does he take any other drugs?

As far as Dr goes, I don't use him. I was lucky enough for my GP to write my script, and he thought it sounded very good. I can understand your uneasiness though. I don't put alot of faith in traditional medicine.

Keep us posted. This is something we need to get to the bottom of. Is your hsbands emotional state OK? Duh?? I don't mean to sound crass, but I know how hard it is to battle the depression. This message board and a couple of others are my lifelines. It's tough when all seems so hopeless. Hang in there? I don't know what else to say.

Marcie (PPMS)

In a message dated 9/13/2004 3:31:11 PM Central Standard Time, Robin.Moody@... writes:

I have a question.

My husband has been taking LDN for about 2 months now (3.0 and now

4.5). He just had his follow-up phone consult with Dr. . The

thing is - from my stand point I've watched him go quickly downhill

since he started taking LDN. The last day that he told me he felt

"good" was the day before he started taking the drug. He hasn't missed

it even once and always takes it at the same time each night 10pm. Every day he suffers headaches, pressure in his head and for the past 3

weeks he has felt sick to his stomach every day for most of the day. He

is losing weight due to not being able to eat. I would guess he has

lost 5-8 lbs in the past month. He didn't have a pound to lose to begin

with. He's not sleeping well at night, his hips ache and he just

generally feels like he has the flu all the time.

Has anyone else felt this way? He tried to talk to Dr. about it

but got nowhere. He just kept telling him that he didn't "think" the

LDN could cause his symptoms. Even after he told him that he had heard

of other people having leg stiffness problems, Dr. told him that

he had never heard of that. Hmmmm.

The

[Guest guest]

It is most likely te filler that was used causing the sickness. If it was

Avicel, Lactose, Cornstarch or Calcium Carbonate used as a filler switch to

Acidophilus. Acidophilus is gentler on the stomach and good for the intestinal

tract and immune system.

[Guest guest]

Dear ,

I did not get a private email from you. I did get a post from you (if I recall

correctly) that you would send something. YES YES YES!!! Send them.

I will RIGHT NOW send you a private email with my home address.

Thanks a bunch,

Jeanetta

cphtgenius@... wrote:

Hey Hey Hey,

Check your mail, J!!! I sent an e-mail a couple of weeks ago asking if you still

needed copies of rx's. I'm cleaning out an old file cabinet of " on-hold " rx's

and I'll be happy to send them to you (minus private info) if you send me your

address or I can fax them to you if you have a fax #.

Let me know,

--

To love what you do and feel that

it matters - how could anything

be more fun? -- Graham

.. . . for my heart rejoiced in

all my labour . . . Ecclesiastes

2:10

-------------- Original message --------------

> Dear Zaynab,

>

> Good luck on your new job. I have no tutorials yet on handwriting as no one

has

> sent any to me yet.

>

> Thanks

> Jeanetta

>

> zaynab zaynab wrote:

> Dear jeanettas

>

> sorry to reply late.i took the july exam and i passed.

>

> i currently found a job in cvs and i asked you about any help with precsriber

> handwriting because i will be working in the retail pharmacy that is why i

> searched for any help with that issue

>

> thank you dearly for all your help

> zaynab

>

>

> ---------------------------------

> Créez gratuitement votre avec 100 Mo de stockage !

> Créez votre

>

> Le nouveau Messenger est arrivé ! Découvrez toutes les nouveautés pour

> dialoguer instantanément avec vos amis.Téléchargez GRATUITEMENT ici !

>

>

[Guest guest]

(unknown)

> has anyone experienced pain 24/7? I have pain

> whether my knee is bent or straight. i just want

> some kind of relief.

I always got relief by elevating my knee above my head and icing it for an

hour or two. Problem is, I didn't want to live the rest of my life on my

back with a bucket of ice at my side.

Mike

MT