[Guest guest]

Amy -

Surprisingly the babies adjust amazing well to the helmets/bands.

My son just gets a bit fussy when we take it off and put it back

on. He never had any issues with it.

It has really done a great job with shaping his head (check out the

post titled WOW!). I would do it again. I would sell my car, my

house whatever we needed to do to correct this problem. He had a

lot of facial asymmetry.

The casting process was not fun. You can find photos of one in the

files section or I think there is one in the photos section too

under " Our Plagio Kids. " It only takes 10-15 minutes tops. It was

tramatic for me and my husband, but not for Dane. He fell asleep in

the tub afterwards and forgot all about it.

It was stressful going out in public at first. I try not to let

people get to me and I bark back a lot. If someone is rude, I

suggest telling them that tehy are rude. Most people are very

genuine and are curious as opposed to rude. I educate those people

on plagio. I would suggest decorating the helmet. I think that

makes it a lot less sterile and more visually pleasing!

Good luck! Hope I answered most of your questions!

Dane's mom (DOC Band 2/14)

> We just made the decision to put our son in a helmet. It was a

very

> hard decision for us to make. We are making a big time,

financial,

> and emotional commitment. Will wearing the helmet make a big

> difference in his head shape? Is it worth it? Would you do it

> again? How bad is the casting going to be? Do the babies hate

it?

> I'm afraid I will cry :-( How to you handle people's reactions in

> public? Is it a big adjustment for the babies to wear their

helmet?

> Do they mind it? Any advice going into this?

>

> I would appreciate any comments! Thanks!

> -Amy

[Guest guest]

Hi again Amy! I think I might have answered some of these during

chat last night. But I just want to say in case I didn't before,

that to me it was totally worth getting the twins banded and without

a doubt I would do it again. To look at their nice round noggins now

really fills me with a sense of pride because it was through hard

work and determination that they are round today. I passed along

your email to , our other Nebraska member, she is very excited

that there is someone in her neck of the woods to talk to! You

should be hearing from her soon! Good luck Amy!

Niki

Kaylie & Danny (STAR grads)

Phila.,PA

> We just made the decision to put our son in a helmet. It was a

very

> hard decision for us to make. We are making a big time, financial,

> and emotional commitment. Will wearing the helmet make a big

> difference in his head shape? Is it worth it? Would you do it

> again? How bad is the casting going to be? Do the babies hate

it?

> I'm afraid I will cry :-( How to you handle people's reactions in

> public? Is it a big adjustment for the babies to wear their

helmet?

> Do they mind it? Any advice going into this?

>

> I would appreciate any comments! Thanks!

> -Amy

[Guest guest]

Amy,

I have no regrets about putting our son in the DOC band. He wore it for

approx. 3 months, from age 5-8 months and received great correction. For us

too, the hardest part was just coming to that decision- it can be very hard

to decide, especially when your Doctors aren't recommending it and family

can't see the problem. Once we got the band, family started realizing and I

guess scrutinizing his head shape and agreed it was the best thing (and so

did his Doctor), and it was working. The casting process is not fun, but it

is literally over in 10 min. I would suggest taking Dad along to distract

him while its getting done. We handled the comments with smiles, and really

let people know that it was not as serious as it looked. Good luck and just

take it a day at a time and it will be over before you know it!!

' Mom

[Guest guest]

Kellie:

I hear you, loud and clear:

Also, I certainly don't mind paying the money, if the care is good.

But, paying $2300 for a helmet that doesn't fit, that hurts her, and

that they will not fix is an expensive lesson for me in egos.

OK, I'm done too.

Have a great day!

> I am glad you were able to find an herbalist that was able to cure

your rash,

> keeping your health in top priority, not his ego. Most of the time

when I

> ask my son's doctor questions, I get a stupid grin and some

comment about

> how I must be a first-time mom because I am worrying too much and

whatever

> I'm worrying about is not important. It is really no wonder to me

why so

> many people are seeking alternative medicine. I am getting to the

point

> where I'd rather look up my ailments in the home remedy book and

try to heal

> it myself, whatever it may be. It's really too bad that a lot of

doctors out

> there have forgotten why they became doctors, to help people. I

think all

> doctors should be required to watch Patch ! Now, there's a

guy who

> didn't care about the money. He just wanted to help people feel

better.

> Anyway, enough of my rambling.

>

> Kellie, mom of

> Tacoma, WA

[Guest guest]

Hi Heidi,

you wrote:

<<??? this is a new one, I must have missed it. Why would cabbage cause

thyroid problems?

If it does, I'd bet it is fresh cabbage. People have been living off

boiled cabbage and sauerkraut for ages. *Fresh* cabbage in large

quantities seems problematic though (it gives me a stomach ache).>>

She probably got it from

http://www.westonaprice.org/askdoctor/ask_hypo.htm

where Dr. Tom Cowan says this about hypothyroidism:

<<The first step is to adopt a diet based on the principles in

Nourishing Traditions and The Schwarzbein Principle. In particular pay

attention to the advice in Nourishing Traditions on soaking grains,

using only healthy fats and oils and avoiding goitrogens, such as soy

foods and raw cabbage. Avoiding excess carbohydrates, as suggested in

The Schwarzbein Principle, will also help wake up your metabolism.>>

Robin

[Guest guest]

Hi :

It sounds like 's casting went as well as can be

expected . The hard part is now over with! Is getting

the DOCband, STARband or local helmet?

Let us know when 's helmet is in & how he adjusts to wearing

it (I'm sure he'll be fine!).

Thanks for the casting update.

You must be a busy woman having 2 kids under 2!

Debbie Abby's mom DOCgrad

MI

> Hi its ! I have a 19 month old named and my 6 month old

son

> who is getting the helmet. Gosh...so many appts. Thats

what I have

> to look forward to. We just got casted today. It went pretty well.

He didnt

> cry at all until they tried to pop his big ol head out of the cast.

I also

> just joined a So. Calif. group that we all keep in touch and hook

up at the

> zoo or where ever. Well definately have to start something with all

the

> plagio. kids and their parents. It would make for some great pics.

Ill keep

> in touch

[Guest guest]

Had a friend who just a stress test and radioactive tracer for blood flow

around heart.

Shes been short of breath, a " punched " feeling in the middle of her chest,

sore arm, etc.

The test indicated blockage in central area of heart. Doc wants to see her

in a couple of days for followup. Doc was matter of factly about it; not

reacting in an alarming way.

Obviously shes concerned and aprehensive.

Any suggestions?

[Guest guest]

How many people on this list are eating all raw or close to it?

I have recently decided to go mostly all raw again (now that it is spring)

and am looking for inspiration.

Elainie

[Guest guest]

Thanks for sharing that ,

so does all juicing make you feel sick? Have you pretty much given that up? I found that I can handle at least carrot/apple juice, but for sure it is not like I crave this stuff. I do occasionally, and a cold glass of carrot juice can taste really good, but I definitely don't do it daily, and I know it would be better for me to.

I am putting together a schedule to post too. I'll do that as soon as I can.

Patty

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

From: JOSEPH PALANCA

Sent: Wednesday, August 13, 2003 10:31 PM

Subject: Re: Re:

My 'protocol" is based on info I have read, mixed with the silicone protocal, The road back protocol, and also Dr Mercola's eating plan. They are all mainly alike , and say the same suppls, and mostly diet. Mostly, my diet consists of no grains, only vegetables as my grains 60%, fruits 20%, and protein at each meal, 20% palm sized as in Fish, nuts, and small mounts of chicken. I do not consume cheeses, and only organic milk once a while in my shake. Most people with auto immunity problems can not tolerate dairy, so I try to stay away from it, as well as gluten found mainly in wheat. The pasteurization in dairy really messes with us, causing food allergies/reactions.

My typical meals go as follows:

Breakfast, a fatigued to fantastic shake with juice and berries mixed in blender, with an egg oblate filled with different veggies (today , spinach and tomatoes, and with the egg yolk as it is good for you, and organic only.) Also, lunch was a tossed salad with greens, yellow squash, onion, cucumber, organic almonds and fresh oil and vinegar with a splash of lemon on it. I do not use salad dressings as they full of preservatives and salt. I use either nuts, tuna fish or chicken-the size of my palm for my protein. Dinner, I had salmon baked in the oven in a orange glaze, made with fresh squeezed orange juice and pieces, olive oil, and a small amount of honey mixed, with side of asparagus, and fresh green beans mixed in a butter sauce. Snack was celery sticks in organic peanut butter. Or apples, or cottage cheese (best cheese available for enzyme breakdown) or a sliced green pepper/cucumber or carrots.

When I look at my meals, my plate consists of 70% vegetables, palm size protein, and small amounts of good fats :Omega 3's (olive oil, butter , fish)

I should see almost 3/4 of my plate is colors (meaning veggies) and a palm size of protein (nuts work too) That is the easiest way for me to follow the correct ratio. Keeps insulin down, and helps breakdown foods, builds up immunity. Insulin is your worst enemy. You can do this, if I go out, I have a salad at 's or Mcs, Burger king or restaurants.

Remember, most ill people either don’t get enough veggies with the proper amounts of minerals/ vitamins or do eat well, but do not utilize them properly They They need extra to make sure they are getting enough to their tissues. Leaky Gut, toxic poisoning, auto immune illnesses and candida infection are main causes of this defiecency My supplements are: An multi enzyme with each meal- (I keep them in my purse) "Fatigued to Fantastic" shake, with 9 additional :2000 Vitamin C, broken up into twice per day, vitamin b complex, co enzyme q10, vitamin E- 500, probiotic (enzymatic therapy brand only) and garlic supp, if I am not cooking with the natural that day, and alpha lipotic acid 1000, msm 2000. That covers all my aminos, and minerals, vitamins. The shake has a lot of what is needed In the protocol, and makes it much easier for me. Out of all the amino acids for cleansing and all the vitamins, I use these specific ones as they seem to cover all my needs, If I do not take these right now, brain fog, stiffness, headaches , fatigue come back within a few days. If I eat sugary foods, or pasta, I get fogged, and bloated, as well as stiff. (this is very bad for candida or yeast problems) I also take 2 teaspoons of fish oil before lunch , (Carlsons Brand) 6 drops of olive leaf extract, and 6 drops of oil of oregano, with a colon cleansing pill daily . I only cook with coconut oil, as Dr Mercola talks about the dangers in cooking with all vegetable oils (omega 6/3 ratio thing) and dangerous trans fats and only some times olive. No margarine, at all. If anything, butter only. it has less trans fats, and saturated and is healthier for you. Never use aspartame or artificial sweeteners, if I have to have it, it is real sugar. No beef, lamb or turkey, potatoes, or bread. I know it sounds confusing, but really it is only 10 pills on top the shake, and only until I feel better. I will cut out the vitamin C, vitamin e, and alpha lipoic when I recover, and am feeling better, as I get enough in my food. Right now I need additional support.

I also exercise every morning for 55 min, get 20 minutes of sun with no sunscreen for vitamin d benefits, Epsom salt baths in Jacuzzi 3 times per week, and currently a coffee enema once a morning. Again, when I am well, I will cut down on the enemas, and also the baths. I also have a prayer journal for 15 min a day.

My favorite books are that absolutely live on, and reread over and over are: Prescription for Nutritional Healing" by Balsh, it is a large book with a-z info on illnesses, minerals, supplements, healing ,fasting, power of veggies everything. It is really the 'bible" on holistic healing to me. The big reader. Anything you have a question about . it is in there, like looking up cold, or yeast infection, to fasting and enemas, to the usage of every supplement and how they work. It is awesome reading. "Living with Auto immune illness" by Shonaman" Dr Mercolas book, "No Grain Diet: and also the Gerson therapy (thanks to you patty) Juicing makes me sick ,and so does any artificial sweetners. If If I had to chose the most important things to take it would be: The shake, enzymes with each meal, 2 tablespoons of fish oil, robotic, b complex, and garlic.Not so bad, right? Most important. Sun is essential too. This is only for a few years, and will all calm down as I get better. I wont always take so much, I just need it now. Based mainly on silicone protocol and blood testing and hair analysis in which I was defiecent. I also take thyroid each morning and at night, as well a progesterone 2 weeks out of the month. It took a while to not seem so overwhelming , but what I did was read a lot of what to take for cleaning out toxins, for energy and rebuilding the immune system for infections. I then made a schedule on paper, and had them all in a little basket (if I was going out I would dump them all in a little bag) with the note saying when to take and what. I keep it all in the kitchen by the sink, and after about 2 months, it became 2nd hand. I no longer need the note to remind myself. Also I reread Dr Mercola's eating plan every week for the 1st 3 months or so, as he recommends this. Hope this helps

[Guest guest]

Hi Teri,

You are right and I just wanted to add that some men hate fake boobs. A guy friend of mine thinks I should get my implants removed regardless of whether they pose a health threat or not. Don't get me wrong, he is a breast man, but he prefers natural small boobs over big plastic ones. Another guy friend of mine stopped calling a girl after he found out her boobs were fake.

There is a misconception that explantation will make you less attractive even though you are doing the right thing for your health. This is not true. There are some guys who like big inflated waterballoon boobs, but most guys prefer them to be real.

Lizeasygoingchickie <coolchickie@...> wrote:

,Thank you for your message to me and Kristi! It is nice to hear that there are MEN out there like your own that are supportive to do the right thing and the right thing is to remove the implants!You are very lucky to have one of those men and he is lucky to have a woman who is not afraid to do what is rignt and share that with all of us.When I started to see my ex-fiance I DIDN'T HAVE my implants and even though he was a BOOB MAN that was not the reason for my decision to get them. I have wanted to get implants a couple of years before I met him but I KNOW if he was still in my life, HE WOULD HAVE NOT supported me to get them out. He never supported me when it came to MY PYSHICAL HEALTH and only supported things that were more on a shallow level. I am glad all my implant problems started

AFTER I ended with him!Thank you for your tips and keeping the hope that there are MEN OUT THERE that will support us to get this poison out of our bodies!Teri

[Guest guest]

,

Please let us know how you do with the testing...hopefully you have found out that this lump is scar tissue and can have it surgically removed...then your healing should continue on an upward trend.. I will keep praying for that!

Patty

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

From: Lee

Sent: Friday, September 05, 2003 8:05 PM

Subject: Re: Re: newly explanted!!!

Patty,

What really brought this to my attention is that I have a large lump at the top of my left breast. I do not recall this being there after my explantation in March 2003. My right breast seems to be fine. I had a mammogram last week and the procedure was VERY painful on my left breast.

I plan to see my regular MD on Monday to discuss my options and further testing (possibly an MRI or ultrasound). My overall health is much better since explant, however, my tissues on my entire left side from my waist up is senstive and tender at many spots. I pray that this lump in my left breast is scar tissue and can be removed with another surgery. Please keep me in your prayers.

[Guest guest]

thank You Terri, you

ve always been very supportive. I'm in a bit of a hurry to get to dr/s. I feel better today. We'll see what Rheumy says and no nothing PcP. Ha. god Bless, easygoingchickie <coolchickie@...> wrote:

Hi ,I wish I had a rich husband too!HA I am fortunate because I have a good job and make a pretty good living for myself but it sucks that the money I made off of selling my townhouse recently I now have to use to take these out. I had been looking at houses and got it down to a couple different ones and then all this. I know it could be worse but it still sucks!HAI hope everything turns out ok and I am thinking about you. Let me know!Teri

[Guest guest]

Dear , Wow you're story sounds so much like mine. I went through depression with the suicidal ideations, I know all caused because of the poison inside me. I had two rupture undetected could have been 2 or 3 years, who knows. I had a mamogram too which might have ruptured them. Surely it damaged things. That aobut when thing went bad for me. 1 year later. About the antibiotic treatment. there is a place called arthritus trust and they have good docotrs all over the nation and other countries who will give antibiotic treatments. Dr. Kolb is in Georgia, you'd have to live near her to get it from her. Try typing in arithritistrust.org, I get back to you on this too. Search for the list of doctors. You have to have acrobat reader to get into a lot of their posts. I doubt insurance pays for these treatments but you never know. arthritus trust treats the illness and not just the

symptoms. Other women talk aobut mycoplasmas on here. A tiny bacteria that lives inside of cell walls that need treated with antibiotic treatments. I'm not real up on it. If you want antibiotic treatment, find the doctors on the arthritus trust web site to find a dr. near you. Good luck, I will tell my mom aobut the goldenseal, she use to swear by it maybe its time for her to try it again. she has bad headaches too. Good luck with your sinuses. I have bad ones too and take allegra 180 mg. per day. Even though its not natural. Think about getting a room humidifier and nasal sprays. Use sprays faithfully, should help headaches too. Sprays are scripts from doctors, such as flonase. Hugs, msfiction101 <MsFiction1@...> wrote:

Find a Dr. Kolb from healing protocols, etc. if you can afford it she will provide intravenous antibiotics. Chealatin, is good too. You're on the right track. Much ahead of me I'm sure. Hope you're feeling improved. Do you have fibro, or connective tissue disease? You're dr. sounds great. God Bless. Love michelle, Left end of your post above. I do appreciate the valuable info you gave me. Went to the Lab sight and I will definitely keep that in mind! You are saying above Dr. Kolb may be willing to put me on intravenous antibiotics if I ask her even if I am not going to see her? That would be something to consider also.... COULD YOU elaborate on that pretty please? The

symptoms I have left now(down from a very long list)are basically fatigue, migraines, nausea and vomiting, & very dry skin. I attribute the fact that I do not have extreme problems - meaning the fibro etc, to that as my immune system started breaking down I was constantly working on building it up. I feel bad for all who have those symptoms to deal with!!!!!!! I thought the migraines and vomiting were due to climate problems and that my "woozy" immune system just could not handle the extreme desert dryness. I had moved out to Arizona 10 years ago and that was when the sinus stuffiness etc kicked in. I was always trying different sinus alternative medicines, surgery, to no avail but did find relief in using all the possible immune builders I could find,(adding them slowly to my regimen). Goldenseal is the main thing that stops the extreme headaches and nausea so that was another reason I thought I had sinus infections, after

all, when I took the Goldenseal for 10 days it cleared up. I did not feel pain in my breast till I had finally gotten so sick I lost my home, job and car and then out of desperation went to the "Drug" Doctor and went in for a routine mammogram. They did an ultrasound and MRI too and I felt pain when the pressed down on my breast. I panicked because I thought I had breast cancer.... Those tests I believe caused the implant to rupture further and for financial reasons I did not take them out for another 8 months knowing I was being poisoned....... It also messed up my hormones so badly that I was extremely suicidal but all the Doctor did was load me up on estrogen pills, shots and crème and tell me I should take out the implant. Never helped me in any other way, although the extreme estrogen did stop the suicidal thoughts, mental torture, and extreme crying jags.LOLThanks to all here, and especially thank you for the

feedback! You really make a difference in my life!Thanks for reading my long post....

[Guest guest]

Hey Group,

It seems like we are all interested in the

details in each others’ BPES cases… siblings affected, infertility

questions, left eye smaller, # of surgeries and types, etc..

Would it be worth the time and would

anyone be interested in starting a database

to collect information about our chat group? This might be a treasure of information

for doctors, researchers and at least us moms, dads, and adults with BPES.

I got the idea from reading the recent

letters about siblings and how we are all wondering the same questions of our

group.

Unfortunately, I am not a computer expert,

but maybe there is someone out there with the interest and expertise that would

like to do this?

Just an idea…

Have a great day everyone!

’s Mom (4 yr old in Iowa, USA)

Sheila

blepharophimosis

Leann, Hi my

name is Michele and I am the only one in my family to have BPES too. The

genetic specialist I went to said it doesn't have to come from anywhere. The

gene can just get messed up on its own. Just thought I would write and tell you

know what I have heard about that.

--- Michele

--- shell3238@...

--- EarthLink: The #1

provider of the Real Internet.

[Guest guest]

Great Idea...but I too am not a computer whiz...mathias <mathias@...> wrote:

Hey Group,

It seems like we are all interested in the details in each others’ BPES cases… siblings affected, infertility questions, left eye smaller, # of surgeries and types, etc..

Would it be worth the time and would anyone be interested in starting a database to collect information about our chat group? This might be a treasure of information for doctors, researchers and at least us moms, dads, and adults with BPES.

I got the idea from reading the recent letters about siblings and how we are all wondering the same questions of our group.

Unfortunately, I am not a computer expert, but maybe there is someone out there with the interest and expertise that would like to do this?

Just an idea…

Have a great day everyone!

’s Mom (4 yr old in Iowa, USA) Sheila

-----Original Message-----From: Michele [mailto:shell3238@...] Sent: Wednesday, October 08, 2003 7:48 PMblepharophimosis Subject: blepharophimosis

Leann, Hi my name is Michele and I am the only one in my family to have BPES too. The genetic specialist I went to said it doesn't have to come from anywhere. The gene can just get messed up on its own. Just thought I would write and tell you know what I have heard about that.

--- Michele

--- shell3238@...

--- EarthLink: The #1 provider of the Real Internet.

[Guest guest]

Would it help if each of us sent an email that said something like this:

Child's Name: Nataley Blankenship

Parent's Name: Sally Blankenship Unaffected

Rusty Blankenship Unaffected

Child's Age: 5

Age at Diagnosis: 2

Fertitlity: Unknown

Siblings: 1 half sister unaffected

Physical Characteristics:

Weight: 5th percentile

Height: 50th percentile

Very small mouth

Roof of mouth is at a peak

Developmental Growth:

1 1/2 years delayed in all areas

Developmental Intervention:

Speech Therapy

Physical Therapy

Occupational Therapy

Eye Surgeries:

1) correct eye muscle weakness

Other Surgeries:

1) Tonsils and Adnoids

2) Teeth Removed

Other Syndromes or Diagnosed Diseases or Illnesses

ADHD

I may have left some things off, but it could be a starting place.

Feichtner <mfeichtner@...> wrote:

I would be willing to do this if you all can help with what exactly to put in the database as far as siblings affected, infertility questions, left eye smaller?, etc. I won't be able to work on it all day everyday, but i do have a couple of days off work and some evenings free where i could go throught the old post and get info.

Hey Group,

It seems like we are all interested in the details in each others’ BPES cases… siblings affected, infertility questions, left eye smaller, # of surgeries and types, etc..

Would it be worth the time and would anyone be interested in starting a database to collect information about our chat group? This might be a treasure of information for doctors, researchers and at least us moms, dads, and adults with BPES.

I got the idea from reading the recent letters about siblings and how we are all wondering the same questions of our group.

Unfortunately, I am not a computer expert, but maybe there is someone out there with the interest and expertise that would like to do this?

Just an idea…

Have a great day everyone!

’s Mom (4 yr old in Iowa, USA) Sheila

[Guest guest]

I would be willing to do this if you all can help with what exactly to put in the database as far as siblings affected, infertility questions, left eye smaller?, etc. I won't be able to work on it all day everyday, but i do have a couple of days off work and some evenings free where i could go throught the old post and get info.

Hey Group,

It seems like we are all interested in the details in each others’ BPES cases… siblings affected, infertility questions, left eye smaller, # of surgeries and types, etc..

Would it be worth the time and would anyone be interested in starting a database to collect information about our chat group? This might be a treasure of information for doctors, researchers and at least us moms, dads, and adults with BPES.

I got the idea from reading the recent letters about siblings and how we are all wondering the same questions of our group.

Unfortunately, I am not a computer expert, but maybe there is someone out there with the interest and expertise that would like to do this?

Just an idea…

Have a great day everyone!

’s Mom (4 yr old in Iowa, USA) Sheila

[Guest guest]

Hi All:

I already have an ongoing database on information sent to me from

subjects who have volunteered to participate in our research. I would

be very interested in expanding and extending this. One BIG issue is

patient privacy / protection and who would have access to this data

and how that would be used? Signed consents? I have ways to deal with

all of these issues... but I think it is important that the " group "

approaches this with some care and thought... and I would be willing to

help.

thanks

kent small md

On Thursday, October 9, 2003, at 01:38 PM, Feichtner wrote:

> I would be willing to do this if you all can help with what exactly to

> put in the database as far as siblings affected, infertility

> questions, left eye smaller?, etc.  I won't be able to work on it all

> day everyday, but i do have a couple of days off work and some

> evenings free where i could go throught the old post and get info. 

>  

>  

>  

>  

>  

>  

> Hey Group,

>

> It seems like we are all interested in the details in each others’

> BPES cases… siblings affected, infertility questions, left eye

> smaller, # of surgeries and types, etc..

>

> Would it be worth the time and would anyone be  interested in starting

> a database to collect information about our chat group? This might be

> a treasure of information for doctors, researchers and at least us

> moms, dads, and adults with BPES. 

>

> I got the idea from reading the recent letters about siblings and how

> we are all wondering the same questions of our group.

>

> Unfortunately, I am not a computer expert, but maybe there is someone

> out there with the interest and expertise that would like to do this?

>

> Just an idea…

>

>  

>

> Have a great day everyone!

>

> ’s Mom (4 yr old in Iowa, USA) Sheila

>

>  

>

<image.tiff>

>

>

>

[Guest guest]

That would great. That's alot of info and more can be added as we go on.

Would it help if each of us sent an email that said something like this:

Child's Name: Nataley Blankenship

Parent's Name: Sally Blankenship Unaffected

Rusty Blankenship Unaffected

Child's Age: 5

Age at Diagnosis: 2

Fertitlity: Unknown

Siblings: 1 half sister unaffected

Physical Characteristics:

Weight: 5th percentile

Height: 50th percentile

Very small mouth

Roof of mouth is at a peak

Developmental Growth:

1 1/2 years delayed in all areas

Developmental Intervention:

Speech Therapy

Physical Therapy

Occupational Therapy

Eye Surgeries:

1) correct eye muscle weakness

Other Surgeries:

1) Tonsils and Adnoids

2) Teeth Removed

Other Syndromes or Diagnosed Diseases or Illnesses

ADHD

[Guest guest]

Hi Group, I think it's a great idea to put some statistics together. I'm very interested also in knowing who took medication during pregnancy and what type. I myself also took an anti-nausea medication as I couldn't even hold down water...without it, I would've ended up Hospitalized with an IV Drip.

Our daughter Alyssa, had a rough start putting on weight (even though well fed and very demanding), but now she is average height etc, and her weight is about at 70%. She is developing skills perfect or ahead of her age.

In answer to one of the questions, I have 3 daughters. 2 older children to my previous marriage who don't have bpes. But, they both have a condition as well. All 3 girls have completely separate issues. My eldest has an illness that I have passed down to her unfortunately. The 'middle' child has an illness with very little known about it, and unlikely any genetic link. And then Alyssa (10 Months) with BPES and no-one in our family has it, or ever heard of it. With 3 children and allot of 'issues', I have definitely completed my family.

I am not good enough on the computer to be of any help putting data together, but am happy to participate.

Regards to you all,

RE: blepharophimosis

Hey Group,

It seems like we are all interested in the details in each others’ BPES cases… siblings affected, infertility questions, left eye smaller, # of surgeries and types, etc..

Would it be worth the time and would anyone be interested in starting a database to collect information about our chat group? This might be a treasure of information for doctors, researchers and at least us moms, dads, and adults with BPES.

I got the idea from reading the recent letters about siblings and how we are all wondering the same questions of our group.

Unfortunately, I am not a computer expert, but maybe there is someone out there with the interest and expertise that would like to do this?

Just an idea…

Have a great day everyone!

’s Mom (4 yr old in Iowa, USA) Sheila

-----Original Message-----From: Michele [mailto:shell3238@...] Sent: Wednesday, October 08, 2003 7:48 PMblepharophimosis Subject: blepharophimosis

Leann, Hi my name is Michele and I am the only one in my family to have BPES too. The genetic specialist I went to said it doesn't have to come from anywhere. The gene can just get messed up on its own. Just thought I would write and tell you know what I have heard about that.

--- Michele

--- shell3238@...

--- EarthLink: The #1 provider of the Real Internet.

[Guest guest]

Dear Patty,

I am hoping that maybe you or someone in the group can give me some advise.

I keep getting really bad heart palpitations they are worse a week before my period is due, they are getting so bad that I feel I am going to faint with them and they make my heart pound for a while after. I have had every test going that shows I have irregularities but they do not need treatment. They are often made worse if I bend over.

Any help would be appreciated.

Sue.

[Guest guest]

Thank you Patty for your advise.

I am going to ask my doctor to send me for a second opinion on my heart tests.

I will also try the coffee enema if I can find some where that do it.

Thanks again

Sue.

[Guest guest]

Thank you for your reply,

I have not had any caffine for over a year, I only drink water.

Yes I am stressed but this seems to be another symptom of silicone as I never had panic attacks or anything before.I am not on any pain meds or medication of any kind I cannot take anything as I react so very badly.

I always get these palpitations about 1 week before my period is due, some are worse than others, they frighten the life out of me, I always wonder if my numbers up.

Any suggestions would be really helpful, Patty has said to try the coffee enema which I will do , I just worry if I will tolerate it, there are so many foods that make me violently ill such as pineapple, milk, strawberries, and lots more.

I think I maybe a really odd case!.

Thank you again

Sue.

[Guest guest]

Sue,

I wish I had some specific answers for you, but I am quite stumped if the doctors know you have these irregularites but claim they do not need treatment. What do they tell you to do? I am sure it is quite frightening for you. They are alarming for me. I am wondering why it is worse when you bend over?

I had palpitations recently, but I am quite certain it was because of my Cytomel thyroid meds, which I cut back to half my prescribed dose. I am feeling much better, and have not had any palpitations for awhile now.

One thing I would like to suggest, and which you might balk at, is the coffee enema. My doctor confirmed for me that coffee enemas are beneficial for helping the liver to eliminate the excess estrogen in our bodies (the liver is responsible for metabolising our hormones. Coffee enemas function as a mild liver flush.) Estrogens effect the thyroid, and the thyroid is very much involved with cardiac function. It may be that your heart palpitations are the end result of a cascade of events starting with your hormonal fluctuations--I am certainly no medical guru and don't know for sure, but I can only say the coffee enemas are very beneficial, and to suggest that you try them. Have you done it before?

In case you are skeptical, let me point out that coffee enemas have been around for decades, have much evidence for their benefits, and are used by thousands of people with good results. Our doctor told my husband and I that he and his wife do them daily, and he is still kicking strong at an old age.

This is just one idea that I can recommend for you...I hope if you try it you'll find it very therapeutic. The instructions can be found in our archives or on any internet search.

Hugs,

Patty

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

From: gibbense@...

Sent: Tuesday, November 11, 2003 3:37 AM

Subject: Re:

Dear Patty, I am hoping that maybe you or someone in the group can give me some advise. I keep getting really bad heart palpitations they are worse a week before my period is due, they are getting so bad that I feel I am going to faint with them and they make my heart pound for a while after. I have had every test going that shows I have irregularities but they do not need treatment. They are often made worse if I bend over. Any help would be appreciated. Sue.

[Guest guest]

Thanks Terri,

I do feel sometimes that i dont' get that much response to my more

personal posts on this group, but I try not to let it get me down. It

is hard for me sometimes to even get on here myself and to post let

alone to respond to everyone elses! Sometimes I get on here, like

right now, I wanted to go through and answer as many as I could, but

the time goes so fast, and I need to be doing studying for a test so

i don't think I will get to write on here as much as I would like. I

am sure it is like that for allot of the girls on here too. I mean I

am sure that most everyone would love to be able to reply to each

post it just gets so time consuming. On the other hand though, if

someone specifically asks for feedback from the group I try my

hardest to respond to those kind of posts. Yes my feelings were a

little hurt that I did not get any responses except for Kaceys when I

first posted about my sister. I was hoping that more would give me

opnions on it.

Anyhow I appreciate your response and thank you for being such a kind

and caring and passionate woman.

your a great friend

In , " easygoingchickie "

<coolchickie@p...> wrote:

> ,

>

> I understand the frustration of people not repsonding to an email

> that you sent. I have been frustrated with the samething lately

> because I notice the same people that never respond to any of my

> emails are the same people that email with everything else. It just

> sometimes adds to the " I am having a bad day " to " Nobody is

> responding to me and NOW, I AM REALLY HAVING A BAD DAY " . I guess

> that most people feel more comfortable responding to emails that

are

> health related but sometimes for me, it would be nice if we touched

> on other things that our " implant nightmare " affected in our lives

> but when you don't get a response by emailing an emotional issue

not

> a physical issue or other things that don't deal with the physical

> side,well, it just makes you feel even more emotional.

>

> I just got back into town and wanted to respond to you because I

> could feel your pain and it is OK to feel the way you do. When I

> tell some people what my implants did to me I can see in their eyes

> that they are thinking there is no way that my implants did all

that

> but when it is your sister, well, you just got to remember she is

> your blood and you tried to help her by warning her of the dangers

of

> implants. I know a part of you probably feels like she didn't

> believe what you went thru and really hurts because she is your

> sister. You know and I know, it is only a matter of time for her

> to " know exactly what you went thru " and my advice is to express

the

> pain and anger of her being alittle ignorant right now, to your

best

> friends, website, and husband, and then remember she is family and

> family is the only forever thing we all have, and know that you

will

> be the one that she will depend on to help her pick herself up when

> she goes thru what you went thru. I think that most women that are

> like your sister that were told all these things about the dangers

of

> implants and they chose not to listen, have an even harder time

> dealing with what is now affecting them that we have already gone

> thru because not only were they denying it would happen to them

but

> ignoring that from people that love them and like you, have been

thru

> it, just for the pure fact of looking alittle better. Trust me,

when

> she realizes that, SHE WILL NEED YOU and as sad as it is, that is

> when she will be able to relate to everything you told her about

> implants and what you tried to shield her from. For some people,

in

> general, that is just the way they are until it happens to them.

> Plus, for your sister she will have to deal with the fact of not

> listening to you and she will feel very ashamed of herself for

that.

> That ashamed feeling alone will tell her she treated you bad and

hurt

> you than anything you said to her now or before, or by not having a

> relationship with her because of all of this.

>

> Implants brought us all pain but they are just NOT WORTH bringing

> extra pain to our lives and even though it is hard to ignore, just

> ignore her " ignorance and denial of implants " and absorb all the

good

> things she knows and has to say that has nothing to do with

implants.

>

> That is my advice and I hope it made you feel alittle better!

>

> Teri