Re: (unknown)

[Guest guest]

Bedford. Dave,

I know you

Mitch

----------

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[Guest guest]

Hi Dave, same position as you,

Where you working?

enjoy the site

Tony Brown

Dave Fireblade <fireblade_@...> wrote:

Hi My names Dave Bedford. I'm 41 years old. An ex RAMC medic.

I work as an offshore medic in the North Sea.

Member Information:

List owner: Ian Sharpe Owner@...

Editor: Ross Boardman Editor@...

ALL list admin messages (subscriptions & unsubscriptions) should be sent to the

list owner.

Post message: egroups

Please visit our website http://www.remotemedics.co.uk

Regards

The Remote Medics Team

[Guest guest]

oops...not supposed to go to group. Never mind.

-- (unknown)

I'm off to the store.........want a rolling doughnut?

Take care of yourself,

Liz

[Guest guest]

Dear ,

Dr. 's actually uses a lot of different supplements and dietary

adjustments in addition to enzymes. I had one patient with mets who refused

chemo and got the " protocol " supplements from his company, which is run by

his son, without much instruction except for the online " manual " . Needless

to say she was not doing very well.

Besides enzymes his mainstay is metabolic typing which has been refined by a

former colleague of his, Wolcott, who combined the sympathetic

approach to metabolic typing with the oxidation approach. He uses challenge

tests that are much more accurate than just using a questionnaire. However,

his computer assisted testing is associated with a major supplement company

that supplies all the required supplements, of which there are usually very

many!!! His cancer protocol is pretty standard for everyone, modified

according to metabolic type.

Wolcott's approach is very similar (except that he expanded the metabolic

approach to both branches) to Dr. , who is trying to get the NHI

sponsored pancreas cancer trial off the ground; there have been enough

successful cases to qualify for this trial! Again, enzyme therapy (up to 40

or more) is a mainstay besides very many other supp's.

Wolcott is not a doctor or dentist and therefore is very carelful about

reporting successes or case reports with regards to cancer patients. In

other words, he cannot back up his claims of treatment successes with his

protocol.

If you are interested about enzyme treatment in cancer and others, there is

a good book " enzymes, the fountain of life " by , , Miehlke -

all German MD's. Enzymes are a major treatment modality in German cancer

clinics.

The enzymes used are usually more than just pancreatic enzymes, including

protease, amylase, lipase, papain, rutin and trypsin - Wobenzyme being one

of the original ones. A more updated version is Vitalzym by World Nutrition

in Phoenix (www.vitalzym.com) which replaces trypsin with serrapeptase;

obviously these are all good for any inflammation and scarring as well.

le Duebendorfer, ND

Sandpoint, ID

(unknown)

>

> Hi group-

>

> What, if anything, do people know about Dr.

> Kelley's approach to cancer? He is a dentist

> who advocates a program called " Metabolic Medicine. "

> He claims that cancer results partly from a deficiency

> of pancreatic enzymes which are responsible, he says,

> for catabolizing inter- and intracellular waste

> products and for digesting the dormant " pre-placental "

> cells as they become cancerous. In addition, he

> advocates metabolic supplementation, detoxification,

> dietary changes, neurological stimulation and a

> spiritual aspect to healing.

>

> His ideology is that the body produces pancreatin to

> diegst food and malignant tumor cells. I don't

> remember learning about the role of the pancreas in

> combatting cancer initiations. Any information that

> you may have will be much appreciated. I am ordering

> the book written by Dr. Kelley and will share anything

> that I learn.

>

> Thanks,

>

> Asmar, ND

> Vancouver, WA

>

>

>

>

>

[Guest guest]

Do you suppose this goes for Orange juice also???

Clara from OR

GRAPEFRUIT JUICE AFFECTS SOME Rx DRUGS>>>> Here are some drugs that interact with grapefruit> juice. Check with your doctor or pharmacist if you're concerned about anyof> your medications.>> Condition Medications

[Guest guest]

Hi everyone.

I just discussed MVI supplementation w/our surgeon this past week. We ordinarily suggest an adult chewable MVI such as "Centrum". Although I have not checked vitamin K content, consistency is most important. Clotting time will be adjusted if it is taken each and every day. The issue re mega-dose vitamins was a question I had. When I've worked w/patients from other programs who had mega-dose MVI's recommended, I've generally found that patients change to regular MVI's eventually. Cost is one of their concerns. I become concerned re giving something that may be potentially difficult to tolerate at a time when po tolerance is precarious.

Kim Knopp

Akron General Medical Center

[Guest guest]

Tamara..

This, the study group, is not only great its a wonderful thing out there for

all technicians to become involved in, not only when studing but to remain

involved in it throughout our careers. I have come across some wonderful

information here that I have even passed along to my co-workers at work who do

not belong here. They have been very surprised by the information that can come

along in here. I strongly encourage to come in take a good long look around. You

will be amazed. Even if you cant come in but say just when ever you find your

self with a free minute. Just take a look, you can always go back over the

messages that you have missed.

So now comes the hard part of it.. You need to tell us a just a tiny bit about

yourself. Where do you work, what part of Va are you from, are you coming to New

Orleans for the NPTA Convention in July(I hope I got the month right).

Just to fill you in, Im LadyCPhT, Skykitten6869, also known as Tracie, Im a

tech now for about 15yrs and enjoy every minute of it. Im also from Virginia. So

give a shout out. Let us know what you think and have a great time exploring..

And dont forget to ask questions. We really enjoy those here..

Take care and have a great week wherever you may work. Just know that the work

you do is greatly appreciated.

Respectfully,

Tracie Smullen,aka.. LadyCPhT and Skykitten6869

[Guest guest]

Welcome Tamara,

Jeanetta Mastron CPhT

Founder/Owner

Tamara <soccer19mom2004@...> wrote:

Hello I would like to join in This looks like a great thing to do. Thanks for

doing this

Tamara

Virginia

__________________________________________________

[Guest guest]

Tracie, Skykitten, LadyCPhT is also one of the first to use the original PTCB

Study Group that I began on Delphi and brought to . Therefore I consider

her one of my first 'graduates'!! In addition Tracie Smullen is National

Pharmacy Technician of the Year 2003, and she is a Retail TEXPERT on this site.

Thank you Tracie for welcoming Tamara.

Jeanetta Mastron CPhT BSChem

F/O

" skykitten6869@... " <skykitten6869@...> wrote:

Tamara..

This, the study group, is not only great its a wonderful thing out there for

all technicians to become involved in, not only when studing but to remain

involved in it throughout our careers. I have come across some wonderful

information here that I have even passed along to my co-workers at work who do

not belong here. They have been very surprised by the information that can come

along in here. I strongly encourage to come in take a good long look around. You

will be amazed. Even if you cant come in but say just when ever you find your

self with a free minute. Just take a look, you can always go back over the

messages that you have missed.

So now comes the hard part of it.. You need to tell us a just a tiny bit about

yourself. Where do you work, what part of Va are you from, are you coming to New

Orleans for the NPTA Convention in July(I hope I got the month right).

Just to fill you in, Im LadyCPhT, Skykitten6869, also known as Tracie, Im a

tech now for about 15yrs and enjoy every minute of it. Im also from Virginia. So

give a shout out. Let us know what you think and have a great time exploring..

And dont forget to ask questions. We really enjoy those here..

Take care and have a great week wherever you may work. Just know that the work

you do is greatly appreciated.

Respectfully,

Tracie Smullen,aka.. LadyCPhT and Skykitten6869

[Guest guest]

Hi, have they checked your rotator cuffs for injuries?? I had severe

upper back pain almost like a triangle between my shoulder blades

and up to my neck. Found out it was from my rotator cuffs almost

being torn and also some other problems I had in my neck that I had

to have surgery one. I still have pain from time to time in that

same spot and the physical therapist gave me exercises to do that

strenghten those muscles and that helps some. Hope they find some

answers for you, sounds painful and if its similar to what I have I

know it is. Best of luck. Sharon group owner

p.s I also have arm and hand pain and they said it was all related

to this.

>

> Hi,

>

> I have severe upper back pain between my shoulders and slightly to

the

> right above the bra strap line. I also have neck pain, sometimes

my

> hand and arm feel numb and also the side of my face. I am 50 yrs

old

> and have worked 34 full time years in a grocery store. I was

wondering

> if anybody has had similiar symptoms?

> I also get pain in my front right side that gets pretty intense at

times

> like a stich you would get in your side when running.

> The doctor has done a chest exray, upper and lower ultra-sound and

ct

> scan. These showed spodilosis of the lower back and a slightly

fatty

> liver. Everything seems to improve considerably when I'm not

working

> and also improved dramatically for 3 days after receivng a deep

massage

> and chiropractic treatment. Something else really strange

happened when

> the chiropractor was doing the electo-heat ultra sound thing.

When he

> moved the paddle over the right side of my upper back my right

front

> side (around my liver) began spasming uncontrollably. I had to

tell him

> to turn it down. I felt nothing when he moved it over my left

side of

> my back and still kept feeling the spasms after he turned it down

and

> moved it over the right. He didn't know what it was. Maybe a

irritated

> nerve. Any ideas?

>

> Thanks.

[Guest guest]

Hi, have they checked your rotator cuffs for injuries?? I had severe

upper back pain almost like a triangle between my shoulder blades

and up to my neck. Found out it was from my rotator cuffs almost

being torn and also some other problems I had in my neck that I had

to have surgery one. I still have pain from time to time in that

same spot and the physical therapist gave me exercises to do that

strenghten those muscles and that helps some. Hope they find some

answers for you, sounds painful and if its similar to what I have I

know it is. Best of luck. Sharon group owner

p.s I also have arm and hand pain and they said it was all related

to this.

>

> Hi,

>

> I have severe upper back pain between my shoulders and slightly to

the

> right above the bra strap line. I also have neck pain, sometimes

my

> hand and arm feel numb and also the side of my face. I am 50 yrs

old

> and have worked 34 full time years in a grocery store. I was

wondering

> if anybody has had similiar symptoms?

> I also get pain in my front right side that gets pretty intense at

times

> like a stich you would get in your side when running.

> The doctor has done a chest exray, upper and lower ultra-sound and

ct

> scan. These showed spodilosis of the lower back and a slightly

fatty

> liver. Everything seems to improve considerably when I'm not

working

> and also improved dramatically for 3 days after receivng a deep

massage

> and chiropractic treatment. Something else really strange

happened when

> the chiropractor was doing the electo-heat ultra sound thing.

When he

> moved the paddle over the right side of my upper back my right

front

> side (around my liver) began spasming uncontrollably. I had to

tell him

> to turn it down. I felt nothing when he moved it over my left

side of

> my back and still kept feeling the spasms after he turned it down

and

> moved it over the right. He didn't know what it was. Maybe a

irritated

> nerve. Any ideas?

>

> Thanks.

[Guest guest]

Hi, have they checked your rotator cuffs for injuries?? I had severe

upper back pain almost like a triangle between my shoulder blades

and up to my neck. Found out it was from my rotator cuffs almost

being torn and also some other problems I had in my neck that I had

to have surgery one. I still have pain from time to time in that

same spot and the physical therapist gave me exercises to do that

strenghten those muscles and that helps some. Hope they find some

answers for you, sounds painful and if its similar to what I have I

know it is. Best of luck. Sharon group owner

p.s I also have arm and hand pain and they said it was all related

to this.

>

> Hi,

>

> I have severe upper back pain between my shoulders and slightly to

the

> right above the bra strap line. I also have neck pain, sometimes

my

> hand and arm feel numb and also the side of my face. I am 50 yrs

old

> and have worked 34 full time years in a grocery store. I was

wondering

> if anybody has had similiar symptoms?

> I also get pain in my front right side that gets pretty intense at

times

> like a stich you would get in your side when running.

> The doctor has done a chest exray, upper and lower ultra-sound and

ct

> scan. These showed spodilosis of the lower back and a slightly

fatty

> liver. Everything seems to improve considerably when I'm not

working

> and also improved dramatically for 3 days after receivng a deep

massage

> and chiropractic treatment. Something else really strange

happened when

> the chiropractor was doing the electo-heat ultra sound thing.

When he

> moved the paddle over the right side of my upper back my right

front

> side (around my liver) began spasming uncontrollably. I had to

tell him

> to turn it down. I felt nothing when he moved it over my left

side of

> my back and still kept feeling the spasms after he turned it down

and

> moved it over the right. He didn't know what it was. Maybe a

irritated

> nerve. Any ideas?

>

> Thanks.

[Guest guest]

Welcome Tony,

Like Ratty said...glad you saw the light and came over to the bright side! I

thought you would have been firimly entrenched in the pension trap though?

Anyway, enjoy the site. Lots of good info and contacts to be had.

Big hugs

Magz Teague (nee Brodie)

(unknown)

Good morning,

Just joined the forum. My name is Tony Ewing and I am currently working

offshore. Spent several years in the navy and left a couple of years

ago.

Rgds

A Ewing

Member Information:

List owner: Ian Sharpe Owner@...

Editor: Ross Boardman Editor@...

ALL list admin messages (subscriptions & unsubscriptions) should be sent to the

list owner.

Post message: egroups

Please visit our website http://www.remotemedics.co.uk

Regards

The Remote Medics Team

[Guest guest]

Hi all

Ex pusser medics, I left in Septmeber working of Egypt for Team recruitment.

Beats being on a black big doing bloody chemistry and having the MEO telling you

the tunnel need cleaning.

Have fun all

'Chasboy'

Chas Sutherland ex POMA/LMA/MA depending how bad I was

" Teague, Margaret J " <brodj2@...> wrote:

Welcome Tony,

Like Ratty said...glad you saw the light and came over to the bright side! I

thought you would have been firimly entrenched in the pension trap though?

Anyway, enjoy the site. Lots of good info and contacts to be had.

Big hugs

Magz Teague (nee Brodie)

(unknown)

Good morning,

Just joined the forum. My name is Tony Ewing and I am currently working

offshore. Spent several years in the navy and left a couple of years

ago.

Rgds

A Ewing

Member Information:

List owner: Ian Sharpe Owner@...

Editor: Ross Boardman Editor@...

ALL list admin messages (subscriptions & unsubscriptions) should be sent to the

list owner.

Post message: egroups

Please visit our website http://www.remotemedics.co.uk

Regards

The Remote Medics Team

[Guest guest]

Mags,

Great to hear from you.

I was entrenched in the pensions trap, however after 13 yrs decided to

move on. Usual reasons.

Hope life is treating you well.

Tony

On Sun, 20 Feb 2005 10:33:22 -0000, " Teague, Margaret J " <brodj2@...>

said:

>

> Welcome Tony,

>

> Like Ratty said...glad you saw the light and came over to the bright

> side! I thought you would have been firimly entrenched in the pension

> trap though? Anyway, enjoy the site. Lots of good info and contacts to

> be had.

>

> Big hugs

>

> Magz Teague (nee Brodie)

>

> (unknown)

>

>

>

> Good morning,

>

> Just joined the forum. My name is Tony Ewing and I am currently working

> offshore. Spent several years in the navy and left a couple of years

> ago.

>

> Rgds

>

> A Ewing

>

>

>

>

>

> Member Information:

>

> List owner: Ian Sharpe Owner@...

> Editor: Ross Boardman Editor@...

>

> ALL list admin messages (subscriptions & unsubscriptions) should be sent

> to the list owner.

>

> Post message: egroups

>

> Please visit our website http://www.remotemedics.co.uk

>

> Regards

>

> The Remote Medics Team

>

>

>

>

[Guest guest]

Hi Chas,

Again, good to hear you are doing well. How I also remember those velco

'hooks'.

Small world - I am currently in Egypt too, just outside andria.

Working on the simian project.

All the best

Tony

On Sun, 20 Feb 2005 12:45:02 +0000 (GMT), " Chas Sutherland- "

<chasboyuk@...> said:

>

> Hi all

>

> Ex pusser medics, I left in Septmeber working of Egypt for Team

> recruitment. Beats being on a black big doing bloody chemistry and having

> the MEO telling you the tunnel need cleaning.

>

> Have fun all

>

> 'Chasboy'

>

> Chas Sutherland ex POMA/LMA/MA depending how bad I was

>

> " Teague, Margaret J " <brodj2@...> wrote:

> Welcome Tony,

>

> Like Ratty said...glad you saw the light and came over to the bright

> side! I thought you would have been firimly entrenched in the pension

> trap though? Anyway, enjoy the site. Lots of good info and contacts to

> be had.

>

> Big hugs

>

> Magz Teague (nee Brodie)

>

> (unknown)

>

>

>

> Good morning,

>

> Just joined the forum. My name is Tony Ewing and I am currently working

> offshore. Spent several years in the navy and left a couple of years

> ago.

>

> Rgds

>

> A Ewing

>

>

>

>

>

> Member Information:

>

> List owner: Ian Sharpe Owner@...

> Editor: Ross Boardman Editor@...

>

> ALL list admin messages (subscriptions & unsubscriptions) should be sent

> to the list owner.

>

> Post message: egroups

>

> Please visit our website http://www.remotemedics.co.uk

>

> Regards

>

> The Remote Medics Team

>

>

>

>

[Guest guest]

Hi Tony.

I am also working on the Simian & Sapphire project on the Skandi Carla started

in December I am there for the rest of the year hopefully were are you

Chasboy

antony ewing <tonytone@...> wrote:

Hi Chas,

Again, good to hear you are doing well. How I also remember those velco

'hooks'.

Small world - I am currently in Egypt too, just outside andria.

Working on the simian project.

All the best

Tony

On Sun, 20 Feb 2005 12:45:02 +0000 (GMT), " Chas Sutherland- "

<chasboyuk@...> said:

>

> Hi all

>

> Ex pusser medics, I left in Septmeber working of Egypt for Team

> recruitment. Beats being on a black big doing bloody chemistry and having

> the MEO telling you the tunnel need cleaning.

>

> Have fun all

>

> 'Chasboy'

>

> Chas Sutherland ex POMA/LMA/MA depending how bad I was

>

> " Teague, Margaret J " <brodj2@...> wrote:

> Welcome Tony,

>

> Like Ratty said...glad you saw the light and came over to the bright

> side! I thought you would have been firimly entrenched in the pension

> trap though? Anyway, enjoy the site. Lots of good info and contacts to

> be had.

>

> Big hugs

>

> Magz Teague (nee Brodie)

>

> (unknown)

>

>

>

> Good morning,

>

> Just joined the forum. My name is Tony Ewing and I am currently working

> offshore. Spent several years in the navy and left a couple of years

> ago.

>

> Rgds

>

> A Ewing

>

>

>

>

>

> Member Information:

>

> List owner: Ian Sharpe Owner@...

> Editor: Ross Boardman Editor@...

>

> ALL list admin messages (subscriptions & unsubscriptions) should be sent

> to the list owner.

>

> Post message: egroups

>

> Please visit our website http://www.remotemedics.co.uk

>

> Regards

>

> The Remote Medics Team

>

>

>

>

[Guest guest]

Chas,

I am about 200 yards from you, you git.

I am on the Orelia, the big one that looks like a skip.

All the best

Tony

On Tue, 22 Feb 2005 13:16:57 +0000 (GMT), " Chas Sutherland- "

<chasboyuk@...> said:

>

> Hi Tony.

>

> I am also working on the Simian & Sapphire project on the Skandi Carla

> started in December I am there for the rest of the year hopefully were

> are you

>

> Chasboy

>

> antony ewing <tonytone@...> wrote:

>

> Hi Chas,

>

> Again, good to hear you are doing well. How I also remember those velco

> 'hooks'.

>

> Small world - I am currently in Egypt too, just outside andria.

> Working on the simian project.

>

> All the best

>

> Tony

>

>

> On Sun, 20 Feb 2005 12:45:02 +0000 (GMT), " Chas Sutherland- "

> <chasboyuk@...> said:

> >

> > Hi all

> >

> > Ex pusser medics, I left in Septmeber working of Egypt for Team

> > recruitment. Beats being on a black big doing bloody chemistry and having

> > the MEO telling you the tunnel need cleaning.

> >

> > Have fun all

> >

> > 'Chasboy'

> >

> > Chas Sutherland ex POMA/LMA/MA depending how bad I was

> >

> > " Teague, Margaret J " <brodj2@...> wrote:

> > Welcome Tony,

> >

> > Like Ratty said...glad you saw the light and came over to the bright

> > side! I thought you would have been firimly entrenched in the pension

> > trap though? Anyway, enjoy the site. Lots of good info and contacts to

> > be had.

> >

> > Big hugs

> >

> > Magz Teague (nee Brodie)

> >

> > (unknown)

> >

> >

> >

> > Good morning,

> >

> > Just joined the forum. My name is Tony Ewing and I am currently working

> > offshore. Spent several years in the navy and left a couple of years

> > ago.

> >

> > Rgds

> >

> > A Ewing

> >

> >

> >

> >

> >

> > Member Information:

> >

> > List owner: Ian Sharpe Owner@...

> > Editor: Ross Boardman Editor@...

> >

> > ALL list admin messages (subscriptions & unsubscriptions) should be sent

> > to the list owner.

> >

> > Post message: egroups

> >

> > Please visit our website http://www.remotemedics.co.uk

> >

> > Regards

> >

> > The Remote Medics Team

> >

> >

> >

> >

[Guest guest]

Hi Loretta. Welcome. I'm a/k/a De a/k/a WWD in Georgia. Genotype 1, just finished treatment last month.

De

Faith is the ability to not panic.

-----Original Message-----From: Kathy brunow [mailto:kathy-boo@...] Sent: Tuesday, February 22, 2005 5:02 PMHepatitis CSupportGroupForDummies Subject: Re: (unknown)Hello Loretta aka Lo..Got this message..How are you doing?? I am Kathy B in Milwaukee aka Kathy Boo..Post transplant 1yrs almost..March 31st is my anniversary date..Texas cool Our Pat is from Texas..tell us about you..Kathy Boo-----

[Guest guest]

Hi Nina

We live in Derbyshire in the UK. My 9 yr old daughter Evie has Bleph, and like you this is new in our family.

Evie has very similar physical attributes to the ones you describe your daughter having ie very wide bridge to her nose,wide set eyes. She does seem to suffer a lot with colds and sinus problems.

She has had an operation to correct her droopy eyelids, and has the option of having further surgery to correct the wide gap between her eyes. She too is very bright and developing well educationally.

She has also had trouble with her teeth, and so far has only lost three of her 'baby' teeth and the doctor has said that her teeth are the age of a six year old. Our dentist is keeping an eye on her but at the moment says there is nothing to worry about. At the same time she has started pubery when she was eight so her growth patterns seem to be a bit all over the place!

Our consultant paediatrician is aware of all these things and has been very reassuring and we have had blood tests done to check her growth hormones etc.

I think what I've found useful is to bear in mind that children do develop at different rates, whether they have bleph or not and that it's best to check if you are worried.

Hope this helps a bit.

love shena

From: cacharonina

blepharophimosis

Sent: Wednesday, February 23, 2005 5:47 AM

Subject: blepharophimosis (unknown)

HI,MY NAME IS NINA AND I HAVE A THREE YEAR OLD DAUGHTER THAT HAS JUST BEEN RECENTLY DIAGNOSED WITH BLEPH.THIS IS NEW TO OUR FAMILY. I AM CONFUSED, BECAUSE MOST OF WHAT I HAVE READ IS BEEN ABOUT THE EYES. MALLORY HAS NOT HAD ANY TROUBLE WITH HER EYES SO FAR,SHE HAS A MILD BILATERAL PTOSIS. SHE HAS MOST OF HER TROUBLE WITH HER NOSE, SHE CATCHES ALOT OF COLDS WICH LEADS TO SINIUS INFECTIONS, WHICH HAS ALSO GOT ALOT BETTER AS SHE GROWED. HER FIRST SINIUS INFECTION WAS AT TWO WEEKS OLD SHE COULD HARDLY BREATH AND IT SCARED US TO DEATH.SHE COULD NOT SLEEP OR EAT. HER PEDIATRICIAN TOLD US THAT SHE HAD SMALL NASAL AND EAR PASSAGES BUT DID NOT REALLY GIVE IT A NAME. SHE HAS NO NASAL BRIDGE AND HER EYES ARE SET FAR APART, LOW SET EARS AND ALOT OF TROUBLE WITH HER MOUTH. SHE JUST RECENTLY GOT HER FRONT TEETH AND HAS TWO ROWS OF TEETH ON THE BOTTOM. I AM FROM THE BAHAMAS AND VERY FEW DOCTORS SPECIALIZE IN ANYTHING LIKE THIS. SHE WAS ACTUALLY DIAGNOSED IN MIAMI AT THE MAILMAN CENTER FOR CHILD DEVELOPMENT. SHE HAS NOT BEEN TESTED ONLY EVALUATED. SHE SEEMS TO BE A LITTLE ADVANCED FOR HER AGE ALSO. SHE IS VERY ACTIVE, AND SEEMS TO BE GROWING NORMALLY. THE DOCTOR HAS SUGGESTED A POSSIBLE SURGERY WHEN SHE IS FIVE TO FIX THE TELECANTHUS. HAS ANYBODY ELSE EXPERIENCED THESE SYMPTOMS? SHE IS STILL MISSING TWO OF HER TOP FRONT TEETH IS THIS CAUSED BY THE BLEPH?

[Guest guest]

Hi there, my name is tonikka and i have a 7 year old son lynden with BPES, he had his 1st surgery at 5 weeks old...he too is the first in the family... he does have the wide set bridge and the lower set ears, with his teeth they are in great condition but he has a severe under bite (where the bottom teeth go over the top instead of top over bottom) the specialist (dentist) says it "may" have something to do with the BPES. lynden has been tested and they grade him at above average intelligence... this his geneticist and his surgeon say that they noticed in the years of being around bpes is quite common(above average intelligence) anyway i hope some of this helps and good luck with your daughter.

Tonikka

-----Original Message-----From: cacharonina [mailto:cacharonina@...]Sent: February 22, 2005 10:48 PM blepharophimosis Subject: blepharophimosis (unknown)HI,MY NAME IS NINA AND I HAVE A THREE YEAR OLD DAUGHTER THAT HAS JUST BEEN RECENTLY DIAGNOSED WITH BLEPH.THIS IS NEW TO OUR FAMILY. I AM CONFUSED, BECAUSE MOST OF WHAT I HAVE READ IS BEEN ABOUT THE EYES. MALLORY HAS NOT HAD ANY TROUBLE WITH HER EYES SO FAR,SHE HAS A MILD BILATERAL PTOSIS. SHE HAS MOST OF HER TROUBLE WITH HER NOSE, SHE CATCHES ALOT OF COLDS WICH LEADS TO SINIUS INFECTIONS, WHICH HAS ALSO GOT ALOT BETTER AS SHE GROWED. HER FIRST SINIUS INFECTION WAS AT TWO WEEKS OLD SHE COULD HARDLY BREATH AND IT SCARED US TO DEATH.SHE COULD NOT SLEEP OR EAT. HER PEDIATRICIAN TOLD US THAT SHE HAD SMALL NASAL AND EAR PASSAGES BUT DID NOT REALLY GIVE IT A NAME. SHE HAS NO NASAL BRIDGE AND HER EYES ARE SET FAR APART, LOW SET EARS AND ALOT OF TROUBLE WITH HER MOUTH. SHE JUST RECENTLY GOT HER FRONT TEETH AND HAS TWO ROWS OF TEETH ON THE BOTTOM. I AM FROM THE BAHAMAS AND VERY FEW DOCTORS SPECIALIZE IN ANYTHING LIKE THIS. SHE WAS ACTUALLY DIAGNOSED IN MIAMI AT THE MAILMAN CENTER FOR CHILD DEVELOPMENT. SHE HAS NOT BEEN TESTED ONLY EVALUATED. SHE SEEMS TO BE A LITTLE ADVANCED FOR HER AGE ALSO. SHE IS VERY ACTIVE, AND SEEMS TO BE GROWING NORMALLY. THE DOCTOR HAS SUGGESTED A POSSIBLE SURGERY WHEN SHE IS FIVE TO FIX THE TELECANTHUS. HAS ANYBODY ELSE EXPERIENCED THESE SYMPTOMS? SHE IS STILL MISSING TWO OF HER TOP FRONT TEETH IS THIS CAUSED BY THE BLEPH?

[Guest guest]

Hello Shena, Im Clare from Hertford UK

I am really interested in your mail, I hope you dont mind me replying. My daughter is also 9 yrs old and I have never thought about the problems she has with colds (sinus problems) as being associated with BPES that we both have. Also her mood swings are becoming more and more obvious and her development, her height and understanding, seems to be more than her friends.

Your mail has just made me look at all of these things in a different way, the possibility of early puberty? Also her teeth all came through 'normally' except she does have many fillings, as my 2 sons dont have any. I wonder if this is related too?

Thank you for sharing this.

Clare Teale

Shena Lawrence <shena.lawrence@...> wrote:

Hi Nina

We live in Derbyshire in the UK. My 9 yr old daughter Evie has Bleph, and like you this is new in our family.

Evie has very similar physical attributes to the ones you describe your daughter having ie very wide bridge to her nose,wide set eyes. She does seem to suffer a lot with colds and sinus problems.

She has had an operation to correct her droopy eyelids, and has the option of having further surgery to correct the wide gap between her eyes. She too is very bright and developing well educationally.

She has also had trouble with her teeth, and so far has only lost three of her 'baby' teeth and the doctor has said that her teeth are the age of a six year old. Our dentist is keeping an eye on her but at the moment says there is nothing to worry about. At the same time she has started pubery when she was eight so her growth patterns seem to be a bit all over the place!

Our consultant paediatrician is aware of all these things and has been very reassuring and we have had blood tests done to check her growth hormones etc.

I think what I've found useful is to bear in mind that children do develop at different rates, whether they have bleph or not and that it's best to check if you are worried.

Hope this helps a bit.

love shena

From: cacharonina

blepharophimosis

Sent: Wednesday, February 23, 2005 5:47 AM

Subject: blepharophimosis (unknown)

HI,MY NAME IS NINA AND I HAVE A THREE YEAR OLD DAUGHTER THAT HAS JUST BEEN RECENTLY DIAGNOSED WITH BLEPH.THIS IS NEW TO OUR FAMILY. I AM CONFUSED, BECAUSE MOST OF WHAT I HAVE READ IS BEEN ABOUT THE EYES. MALLORY HAS NOT HAD ANY TROUBLE WITH HER EYES SO FAR,SHE HAS A MILD BILATERAL PTOSIS. SHE HAS MOST OF HER TROUBLE WITH HER NOSE, SHE CATCHES ALOT OF COLDS WICH LEADS TO SINIUS INFECTIONS, WHICH HAS ALSO GOT ALOT BETTER AS SHE GROWED. HER FIRST SINIUS INFECTION WAS AT TWO WEEKS OLD SHE COULD HARDLY BREATH AND IT SCARED US TO DEATH.SHE COULD NOT SLEEP OR EAT. HER PEDIATRICIAN TOLD US THAT SHE HAD SMALL NASAL AND EAR PASSAGES BUT DID NOT REALLY GIVE IT A NAME. SHE HAS NO NASAL BRIDGE AND HER EYES ARE SET FAR APART, LOW SET EARS AND ALOT OF TROUBLE WITH HER MOUTH. SHE JUST RECENTLY GOT HER FRONT TEETH AND HAS TWO ROWS OF TEETH ON THE BOTTOM. I AM FROM THE BAHAMAS AND VERY FEW DOCTORS SPECIALIZE

IN ANYTHING LIKE THIS. SHE WAS ACTUALLY DIAGNOSED IN MIAMI AT THE MAILMAN CENTER FOR CHILD DEVELOPMENT. SHE HAS NOT BEEN TESTED ONLY EVALUATED. SHE SEEMS TO BE A LITTLE ADVANCED FOR HER AGE ALSO. SHE IS VERY ACTIVE, AND SEEMS TO BE GROWING NORMALLY. THE DOCTOR HAS SUGGESTED A POSSIBLE SURGERY WHEN SHE IS FIVE TO FIX THE TELECANTHUS. HAS ANYBODY ELSE EXPERIENCED THESE SYMPTOMS? SHE IS STILL MISSING TWO OF HER TOP FRONT TEETH IS THIS CAUSED BY THE BLEPH?

[Guest guest]

Clare,

I was just reading your reply to Shena and you made me think...LOL. My oldest son, who is 11, actually started puberty at the age of 9. He also has ADD and during the process of all the testing to determine if he had ADD, the doctor mentioned to me that he was starting puberty. At that time he already had underarm hair. He turned 11 in Sept. and he is already taller than me. He's 5ft. 8in. tall and wears a mens size 11½ shoe. He was back to the regular in Jan. and he's started the 2nd phase of puberty. I made hubby take him to that appointment because we had some questions about it and felt my son would be more comfortable with his dad instead of me. I sure wish there was more that the doctors knew about BPES. It's always a guessing game. Wonder if this or that has to do with BPES.

[Guest guest]

hi there, what a roller coaster, my son lynden as i replied earlier has some of the same features as others........ puberty ithink he is not there yet but he is tall and i mean tall i am 5 foot 3 (i am not tall by any means ha ha)and lynden is about 5 feet, his feet are size 5, most of the other kids in his class have size 1 or 2 feet. now his dad is 6 foot 2 but now that i see your guy's posts i am wondering if this is related to the BPES, lol

Tonikka

-----Original Message-----From: Feichtner [mailto:mfeichtner@...]Sent: February 23, 2005 11:09 AMblepharophimosis Subject: Re: blepharophimosis (unknown)

Clare,

I was just reading your reply to Shena and you made me think...LOL. My oldest son, who is 11, actually started puberty at the age of 9. He also has ADD and during the process of all the testing to determine if he had ADD, the doctor mentioned to me that he was starting puberty. At that time he already had underarm hair. He turned 11 in Sept. and he is already taller than me. He's 5ft. 8in. tall and wears a mens size 11½ shoe. He was back to the regular in Jan. and he's started the 2nd phase of puberty. I made hubby take him to that appointment because we had some questions about it and felt my son would be more comfortable with his dad instead of me. I sure wish there was more that the doctors knew about BPES. It's always a guessing game. Wonder if this or that has to do with BPES.

[Guest guest]

These might be interesting questions to pose to the adults who have

BPES, I have BPES and I did have a lot of ear infections, sinus

infections, and still get sinus infections, my nose bridge is small

but not extremely so. I was tall for my age, entered puberty young

(11). I never thought any of these things were particularly unusual.

> hi there, what a roller coaster, my son lynden as i replied

earlier has some

> of the same features as others........ puberty ithink he is not

there yet

> but he is tall and i mean tall i am 5 foot 3 (i am not tall by any

means ha

> ha)and lynden is about 5 feet, his feet are size 5, most of the

other kids

> in his class have size 1 or 2 feet. now his dad is 6 foot 2 but

now that i

> see your guy's posts i am wondering if this is related to the

BPES, lol

>

> Tonikka

> Re: blepharophimosis (unknown)

>

>

>

> Clare,

>

> I was just reading your reply to Shena and you made me

think...LOL. My

> oldest son, who is 11, actually started puberty at the age of 9.

He also

> has ADD and during the process of all the testing to determine if

he had

> ADD, the doctor mentioned to me that he was starting puberty. At

that time

> he already had underarm hair. He turned 11 in Sept. and he is

already

> taller than me. He's 5ft. 8in. tall and wears a mens size 11½

shoe. He was

> back to the regular in Jan. and he's started the 2nd phase of

puberty. I

> made hubby take him to that appointment because we had some

questions about

> it and felt my son would be more comfortable with his dad instead

of me. I

> sure wish there was more that the doctors knew about BPES. It's

always a

> guessing game. Wonder if this or that has to do with BPES.

>

>

>

>

>