(No subject)

[Guest guest]

Subj: (no subject)

Date: 3/27/2002 4:01:12 PM Eastern Standard Time

From: <A HREF= " mailto:DanatFNP " >DanatFNP</A>

<A HREF= " mailto: " > </A>

Subj: Re: BAD GAS!!!

Date: 3/27/2002 3:34:25 PM Eastern Standard Time

From: <A HREF= " mailto:DanatFNP " >DanatFNP</A>

<A HREF= " mailto: " > </A>

Please let me clarify what Carol Hirn said about the anti-gas med. WE ARE

NOT RECOMMENDING THIS BECAUSE WE DON'T KNOW WHAT THE EFFECTS ARE ON YOUR

STOMACH, GUT , OR LIVER. Ms Hirn called and asked if we knew of anything that

would help with really bad gas. I told her we had some information but that

we are not recommending this to our patients because it is unproven in our

patients.

PLEASE UNDERSTAND THAT IT IS NOT ON OUR RECOMMENDATION THAT YOU USE THIS

PRODUCT CALLED Devrom

Dana Thorneburg, NP

CLOS

[Guest guest]

Dana: I just wanted to let you know that All the test that were ordered for

my chest pain came back negative. The liver and pancreas studies were also

negative so Dr Barbara Cruikshank gave me AcipHex 20mg. I am to take one a

day for 1 month and then if the pain is gone so be it but if not then we do

more studies. I have only been on it for 4 days and have not had any pain.

Last year before MGB I couldnot finish the Thallium Stress test. I was too

short of breath to even complete the walking portion. I did fine this year.

I will get the lab reports and send them to you if you want them. Dr.

Cruikshank was very glad to say I was really healthy. I also had a bone

density and it was fine also Hips are better than a 22 year old and lower

back is only slightly less. Not enough to try any medications. Phyllis

[Guest guest]

If you are talking about the mini-scooters (like the Kitchen one-I own

his competitor's) it is just a pipe that can be cut with a

pipe-cutter. I work at a University and our plumber was going to

cut mine but it turned out I didn't need it. Try your local hardware

place,

> Hi,

>

> I am looking to get an electronic scooter for my daughter, an achon.

I have

> not found anyon willing to adapt the seat depth to accommodate her

short

> legs.

>

> Any suggestions?

> Heidi

[Guest guest]

Personally, I would be proned to support Lee Kitchens. I believe they're

called " Kitchens Cart " . Simple name, for a great product.

(no subject)

Hi,

I am looking to get an electronic scooter for my daughter, an achon. I

have

not found anyon willing to adapt the seat depth to accommodate her short

legs.

Any suggestions?

Heidi

===

[Guest guest]

Audrey, thanks for replying. When did you have your last surgery? Which bone did they replace? Just curious, because mine was the stapes, but I still had the footplate. When I said I was dizzy, I mean it is BAD!! I have had a little dizzines before with other ear surgeries that usually go away a few days after, but this has been non stop. Hopefully I will get some comfort after they remove the fake bone. Did any of your fake bones have to be taken out again or redone? Was it because c-toma had come back? Please let me know, thanks, Charla.

[Guest guest]

Hi Charla, After all three of my ops that were reconstruction I have experienced dizziness. As I am still recovering from my last op I must say that being strict with not bending forward and no heavy lifting and plenty of rest has allowed me to recover quickly. The amount of "dizziness" this time was considerably reduced...maybe because I have actually taken time to rest! Audrey (no subject) Has anyone here experienced dizziness after their reconstruction surgery? Also how do I get into the chat area. I am responding because I keep getting these messages in my e-mail. Thanks, Charla

[Guest guest]

Hi Charla, My last surgery was ten days ago. To be honest I am not sure which bones they replaced this time but I do know one was lodged in the ear canal and had to be "cut out" and repositioned. I did not get to talk to the ENT who did the op afterwards and will not for about 3 months (I live in the middle of "nowhere"!!) I do know with my first op ALL the bones were destroyed and as far as I know all removed. I am a bit sad with the realisation that it was again a failure as the doc said it's the last time he will try as it is most likely nerve damage...irreparable. At least there is no sign of C-toma since my first op 8 years ago. I do remember actually falling to the floor a couple of times without explanation in the early days...before the C-toma was removed. Strange feeling like you are drunk but not! I guess you need to talk to your doctor. Why will they remove the "fake" (prosthesis) bone? Good luck Audrey Re: (no subject) Audrey, thanks for replying. When did you have your last surgery? Which bone did they replace? Just curious, because mine was the stapes, but I still had the footplate. When I said I was dizzy, I mean it is BAD!! I have had a little dizzines before with other ear surgeries that usually go away a few days after, but this has been non stop. Hopefully I will get some comfort after they remove the fake bone. Did any of your fake bones have to be taken out again or redone? Was it because c-toma had come back? Please let me know, thanks, Charla.

[Guest guest]

Hi Audrey, hope your recovery goes well. Where do you live? I could not imagine not speaking to my surgeon for 3 months. My Ent is removing the fake bone because something is wrong that is causing me so much dizziness and he thinks it is the fake bone. My hearing has not improved so there is no benefit of keeping it in. Hopefully that will stop the dizziness and then I will have to wait a year before trying to reconstruct again. Also I never had dizziness when I had c-toma in my ear and that is why he thinks it is the fake bone, that maybe it wasn't positioned correctly. By the way this is a different ENT, than the one who did it, so hopefully it will work. Happy recovery to you, Charla.

[Guest guest]

Hi Charla, I live in a small town on the North West coast of Australia. A place called Broome. The ENT comes from the city (3000 miles south) about every 3 months. We have a lot of Aboriginal people living here and ear problems are very common with the race. I am not Aboriginal but do work in an art gallery selling the work! I hope the removal has a good effect on your dizziness. I am recovering well. Already starting to get bored not being able to "do much". Take care Audrey Re: (no subject) Hi Audrey, hope your recovery goes well. Where do you live? I could not imagine not speaking to my surgeon for 3 months. My Ent is removing the fake bone because something is wrong that is causing me so much dizziness and he thinks it is the fake bone. My hearing has not improved so there is no benefit of keeping it in. Hopefully that will stop the dizziness and then I will have to wait a year before trying to reconstruct again. Also I never had dizziness when I had c-toma in my ear and that is why he thinks it is the fake bone, that maybe it wasn't positioned correctly. By the way this is a different ENT, than the one who did it, so hopefully it will work. Happy recovery to you, Charla.

[Guest guest]

Christin,

I have a nearly 12 month old son with achondroplasia. You're not

alone about having to deal with a pediatrician, and other medical

professionals, who have no experience, and therefore no clue,

with dwarfism, even if achondroplasia is the most common type

of dwarfism around. Two ways to combat this one: (1) Learn

what you can about Achondroplasia; (2) See a dwarfism

specialist to get straight answers about his care and what you

should or shouldn't worry about.

If you don't have any info at all (in English), a good place to start

would be the LPA Online FAQ page ( http://www.lpaonline.org/

resources_faq.html ). In particular, it's important that you print

out a copy of the " Health Supervision for Children With

Achondroplasia " paper put together by the American Academy of

Pediatrics as a guideline for care. You can get also get it here:

http://www.aap.org/policy/00696.html . Make sure the

pediatrician gets a copy of this, and keep one for yourself, too.

This paper was written to act as a guideline for your son's care,

and at the very least, the pediatrician should know the

information given here.

The Health Supervision paper will also tell you what you should

and should not do with your baby, as well as what type of

equipment should be avoided. In particular, your son should

never be propped up to a sitting position, or any position where

his spine is curved unless he pulls himself to a sitting position

_by himself_. Keep his spine straight as much as possible: that

includes changing the way he is carried in your arms. There are

very good medical reasons for doing these things, including

letting him develop gross motor skills at his own pace.

Achondroplasts are born with low muscle tone (characteristic of

achondroplasia) that inexperienced medical pros end up talking

about physical and occupational therapy and worrying about

other complications (hydrocephalus -- which they all have to

varying degrees) that may or may not be warranted. Again, see

what dwarfism experts have to say about this first. In addition,

the joints are more flexible than their average size peers, which

basically translates to needing more time to master balance and

control of their extremities because it takes more muslces to

stabilize their joints than it does the average size infant.

His head and neck should always be moved as one unit. The

opening at the base of the skull is also typically smaller than

those of average size infants. This opening is where the brain

stem and the spinal cord are joined, and it is also through this

opening that fluid that washes and covers the brain and spinal

cord flows. Because this opening is typically smaller, there is a

greater risk of the spinal cord rubbing against the edges of this

opening, causing damage to vital nerves. The low muscle tone

doesn't help matters, and it will take time for his muscles to

strengthen enough for him to keep his neck from snapping --

something that is also likely to happen if he is propped up

without proper head support. Ensuring that the head and neck

are moved as one unit is a safeguard against nerve damage in

this area.

The Health Supervision paper will also give you guidelines on

when to see which specialist to head off any common

complications associated with achondroplasia. Remember,

though, that inspite of these 'special' considerations, your son is

just like any other child for the rest of his needs. So, you still

need the pediatrician :-) But, if you ever doubt what the

pediatrician says, ask a dwarfism specialist and you may find

that your doubts are substantiated.

Finally, there is a club for new parents of children with dwarfism

where you can get ideas, support, and information about what to

do, from other parents who have dwarf children. I cannot

overstate the value of the collective experience of these parents

and their generosity in sharing them. Even if you don't join, I

encourage you to go the the PHOTO ALBUMS section, and click

on the folder called GROWTH CHARTS. You should also keep

copies of these charts for yourself, and another set for the

pediatrician. These charts will give you an idea of gross motor

milestone timeframes, weight to height ratios, and typical head

circumference growth for an achondroplast child. You and the

pediatrician should be using these charts instead of the

'standard' ones. The club is at

parentsoflittlepeople2/

amelia

> Hi , I am the mother of a 3 month old baby boy with

achondroplasia . I have

> alot of questions about the care of my son . ie what baby

equipment would be

> the best for him , does he really need so much physical

therapy , is it

> normal that he eats less then other average size babies ? I

don't think that

> my sons pediatrition knows what he's doing ! I'm very

frusterated because

> none of my questions are being answered . I spoke a little with

monica pratt

> but all of the information was sent to me in spanish . I tried to

call but I

> believe she is still at the convention . I would love for any of you

LPs out

> there to give me an email back with tips and advise about my

son 's condition

>

>

> thanks , Christin

>

>

>

[Guest guest]

Hi Mackenzie

I'm a business major.

sincerly,

little lady

[Guest guest]

on 19/8/02 4:42 PM, glitterari@... at glitterari@... wrote:

Glitter, what a great message. Thank you for having such a great soul.

k

> Nick, if you had NO serotonin you would be dead. Only 5% of the serotonin in

> your system is in your brain; the other 95% is in your digestive tract and it

> helps with many other bodily functions besides regulating mood, and nobody's

> REALLy sure that it's the only neurotransmitter responsible for doing THAT!

> These drugs mess up the synergistic chemical balance in your brain. You are

> going to feel all sorts of weird things as your brain attempts to balance

> itself. I hope you are keeping notes of your experience of climbing out of

> the pit that the SSRIS have thrown you into. It is some really interesting

> perceptions, worthy of documentation. Chin up!! It will get better.

>

> Glitter, author of <A HREF= " www.xlibris.com/BlindReason.html " >Blind

> Reason</A>

>

>

>

[Guest guest]

On the website, he has his cell phone number listed.

aW

(no subject)

hello everyone, i had my mgb on march 30, 2000 with dr rutledge. i was 254lbs

now 135 to 140 for over 2 years now. i want a tummy tuck and thigh lift can

someone give me imfo on dr don and how to reach him or his office? my

insurance will pay for it if it is medicaly nes. at 90% in network 80% out of

network. can someone please help me with this imfo because i don't feel

complete about my self, and i don't feel good about me with all this loose

skin i have and it realy bothers me alot. i feel ugly when i look in the

mirror. i do not have a whole lot of skin but it does look bad and hangs. so

please someone help me!!!!!

[Guest guest]

How can I get my insurance to help pay for ps? I did

not think insurance covered anything like this. Am I

missing something? If the insurance helps pay for

this it would be wonderful!!

Vicki in FL

--- HIGHDRIV@... wrote:

>

> hello everyone, i had my mgb on march 30, 2000 with

> dr rutledge. i was 254lbs

>

> now 135 to 140 for over 2 years now. i want a tummy

> tuck and thigh lift can

> someone give me imfo on dr don and how to reach him

> or his office? my

> insurance will pay for it if it is medicaly nes. at

> 90% in network 80% out of

>

> network. can someone please help me with this imfo

> because i don't feel

> complete about my self, and i don't feel good about

> me with all this loose

> skin i have and it realy bothers me alot. i feel

> ugly when i look in the

> mirror. i do not have a whole lot of skin but it

> does look bad and hangs. so

> please someone help me!!!!!

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

hi peter! i am so pleased with your progress! you are doing a lot

better than i did! i have lost 115 and am at goal....kinda i wanted

to lose 100 " and i would be happy " 115 is MUCH better, but 5 more

would be excellent! LOL! i think i am stuck now, but i am THRILLED

if i never lose another ounce. i went from size 28 to an 8. it is

unimaginable. soon you will be putting on your old pants and

holding them WAAAAAAAAAAAAAAY out in the waist and begging people to

take pictures! LOL. peter, this surgery give you a heightened sense

of compassion. you will never forget where you came from. enjoy, my

friend. and welcome to " the other side " by the way.....Chicago? i

hear there is GREAT shopping there!!! i may have to get up there

sometime! (shopping is my new vice)

xoxox

cathy s in va

MGB 11-16-00

279(highest) MGB-248/133

> I have not talked to anyone in a while I would like to tell you all

how I am

> doing if you care to know.

> I have lost 68 pds since june 6th and I feel great and look good.

My blood

> pressure is normal and I only take a half pill every couple of

days. My sleep

> apnea is almost all gone and I sleep thru the nite without my c pap

machine.

> This was the greatest thing I could have done and now I have

several friends

> that have gone thru surgury and are going to have it done in the

near future.

> What I am most happy about is that my daughter is going to have the

surgury

> on oct 6th and I will be down to see the girls in N C.

> Also my wife who was very sceptical is now a believer and she is

very happy

> with my progress.

> Good Luck to every one and I'll keep you posted on my progress

> Sincerely,

>

> Tosto from Chicago 310/242

>

>

>

[Guest guest]

Pete, We can't wait to see you. You know how proud we are of you...

I'm sure your daughter will do just as well as you have and we will take

very good care of her. When will you be coming in for the surgery. If

you need anything at all please give me a call. We will see you very

soon.. Take care.

Penny

(no subject)

I have not talked to anyone in a while I would like to tell you all how

I am

doing if you care to know.

I have lost 68 pds since june 6th and I feel great and look good. My

blood

pressure is normal and I only take a half pill every couple of days. My

sleep

apnea is almost all gone and I sleep thru the nite without my c pap

machine.

This was the greatest thing I could have done and now I have several

friends

that have gone thru surgury and are going to have it done in the near

future.

What I am most happy about is that my daughter is going to have the

surgury

on oct 6th and I will be down to see the girls in N C.

Also my wife who was very sceptical is now a believer and she is very

happy

with my progress.

Good Luck to every one and I'll keep you posted on my progress

Sincerely,

Tosto from Chicago 310/242

[Guest guest]

,

Congratulations! It is so good to hear the positive. My health was the main

reason I had the MGB, post like yours remind me of that.

Take care,

Trish

(no subject)

> I have not talked to anyone in a while I would like to tell you all how I

am

> doing if you care to know.

> I have lost 68 pds since june 6th and I feel great and look good. My blood

> pressure is normal and I only take a half pill every couple of days. My

sleep

> apnea is almost all gone and I sleep thru the nite without my c pap

machine.

> This was the greatest thing I could have done and now I have several

friends

> that have gone thru surgury and are going to have it done in the near

future.

> What I am most happy about is that my daughter is going to have the

surgury

> on oct 6th and I will be down to see the girls in N C.

> Also my wife who was very sceptical is now a believer and she is very

happy

> with my progress.

> Good Luck to every one and I'll keep you posted on my progress

> Sincerely,

>

> Tosto from Chicago 310/242

>

>

>

[Guest guest]

YEAH ! Congrats on your outstanding weight loss! And I'm SO happy to hear

your daughter is starting a whole new life, as well! Thanks for the update.

You are the best at keeping your contacts posted on your progress. No one else

has ever done that.

in OK

MGB 3/29/2001

303/145

Tummy Tuck scheduled 12/16/02

sizes 5/6-7/8

[Guest guest]

HI.Going 8 months now off TX.Energy level has returned to almost normal,when I

stop smoking I can run the 100 mtrs in a minute.Stop smoking almost as difficult

as beating the dragon.Went to a chinese doc for acupuncture.He put little a

little silver knob in my right ear.Whenever I felt the need of smoking I had to

push it 30 times,(TRUE).It cost me 30 dollar.When I took the streetcar home the

driver stopped the streetcar because he thought that I was a nutcase.When I told

him about the knob in my ear etc. it made things worse and the paramedics took

care of me.I think I just going to buy a box of wet matches.Lol,.

(no subject)

, I think most may have over eaten our Traditional Thanksgiving

Dinner.Turkey,stuffing,sweet potatoes, cranberries,corn,and of course pumpkin

pie with whipped cream. I found a bill I had stamped as a bookmark. I

finally put everything on a clipboard. Where I go it goes, if I lose it I am

a goner. How long have you been off treatment now and how is your physical

energy level?

Donna who thinks everyone is still sleeping off their Thanksgiving Feast!

[Guest guest]

How about Weepee Sweetie?

gail

From: Mscue40@...

Reply-Hepatitis C

Date: Thu, 2 Jan 2003 00:10:31 EST

Hepatitis C

Subject: (no subject)

If she was named for her personality it would be pee pee,wee wee , Poo Poo,

chewy, or some where along those lines:) she is really a sweet little dog.

Just 8 lb. a shi poo. All black. so tiny, so cuddly. Yes, I agree everyone

needs to go out and get a puppy, except Tao with all her cats.

Thanks everyone 1

This has been a lot of fun.

Donna

[Guest guest]

How about Weepee Sweetie?

gail

From: Mscue40@...

Reply-Hepatitis C

Date: Thu, 2 Jan 2003 00:10:31 EST

Hepatitis C

Subject: (no subject)

If she was named for her personality it would be pee pee,wee wee , Poo Poo,

chewy, or some where along those lines:) she is really a sweet little dog.

Just 8 lb. a shi poo. All black. so tiny, so cuddly. Yes, I agree everyone

needs to go out and get a puppy, except Tao with all her cats.

Thanks everyone 1

This has been a lot of fun.

Donna

[Guest guest]

That's the nature of puppies, isn't it <g> Maybe you could post a pic of her in

our photos section so we can all see her.

And you are right....my 9 cats (recently had to put one down) would not like to

have a puppy in their turf <g>

Tatezi

(no subject)

If she was named for her personality it would be pee pee,wee wee , Poo Poo,

chewy, or some where along those lines:) she is really a sweet little dog.

Just 8 lb. a shi poo. All black. so tiny, so cuddly. Yes, I agree everyone

needs to go out and get a puppy, except Tao with all her cats.

Thanks everyone 1

This has been a lot of fun.

Donna

[Guest guest]

That's the nature of puppies, isn't it <g> Maybe you could post a pic of her in

our photos section so we can all see her.

And you are right....my 9 cats (recently had to put one down) would not like to

have a puppy in their turf <g>

Tatezi

(no subject)

If she was named for her personality it would be pee pee,wee wee , Poo Poo,

chewy, or some where along those lines:) she is really a sweet little dog.

Just 8 lb. a shi poo. All black. so tiny, so cuddly. Yes, I agree everyone

needs to go out and get a puppy, except Tao with all her cats.

Thanks everyone 1

This has been a lot of fun.

Donna

[Guest guest]

What a riot, you cracked me up on that one!

Donna

[Guest guest]

What a riot, you cracked me up on that one!

Donna