hi!

[Guest guest]

Hello Geoff,

I guess my silence has some wondering how I am.It is a little bit of

everything right now. I am not in pain from the AS but I have some pain from

my trigeminal neuralgia. I have seen a neurosurgeon about operating on me

I know, you are probably getting the jitters about some doc opening up my

brain, well you are not alone!!) I am seeing two docs and see what are the

possibilities but after three years of suffering with this, I am starting to

want to take my chance on this) . My family doc is terrified on this and

wants me to see the best surgeon here for that. You see , this operation has

a 60% chance of side effects: losing my hearing,losing my eyesight or

falling paralyzed. Not great when I am still young.

Of course my other culprit is my allergies which have pretty well taken over

my life. Last week, I woke up in the middle of the night completely cut off

from breathing. You never saw anyone jump out of bed so quick!!! My husband

was terrified and almost passed out. He never gets used to this. After

trying everything to help me , we called an ambulance( you know how I hate

going to the hospitals). Well after I got lots of injections to bring down

the choking, I was better by morning. I was ready to go home, BUT! This

cleaning guy had to turn up. I rang for the nurse and said to get that guy

away from me because I go into anaphylactic shock with the cleaning stuff.

His response: get this... " your not allergic to that " and turns away. The

cleaning guy gets even closer and I am making gestures to get away from me,

BUT NO he is all around my bed washing the floor. I knew that if I stayed in

that bed for 5 more minutes I would be in serious trouble. I had my oxygen

mask and the covers up against my face, i ripped out my IV and went out the

door. I was VERY angry. My husband was coming to pick me up anyways and I

told him what happened. I THOUGHT, I was home free BUT no... I just walked

in the door of my house, my nurse had arrived to give me my IV Clindamycin

and then BOOM! I started to react very badly and I was turning lobster red

and blue. Both my husband and my nurse wanted to call an ambulance to bring

me back to the hospital. I gestured , no way!!! I wanted to go to the clinic

beside me since they have all the equipment for asthmatics and they do know

me very well. This was the first and last time I walk into this clinic in my

pyjamas and slippers.

The nurse ran after the doc and jumped on the phone for an ambulance. I

gestured no way again. This actually terrified the two docs that were there.

They saw, things were really not going well. I was so swelled up in my face

and body, it was obvious I wasn't getting enough oxygen.

They just kept giving me adrenalin , benedryl and ventolin and epinephrine

straight into my lungs and throat. The ambulance guys arrived and the docs

again tried to convince me to go to the hospital. One ambulance guy had

brought me in three times before and told the doc that he understood

completely why I didn't want to go. He did say though that he wasn't going

to leave until I was out of danger. So, I had two docs, two nurses , two

ambulance guys and hubby all around me. I felt like it was my last rights.

Things were pretty touch and go for awhile, the intubation equipment came

out as well as those great little heart paddles since I was in fibrillation.

Finally, in the end things calmed down and I was dead beat from all the

adrenalin( felt like I ran a thousand miles).

The docs were quite angry at what happened at the hospital and are writing a

complaint for putting my life in jeopardy. Hubby called the hospital too.

They say cats have nine lives??? I would say I have pretty well used up all

of them and more....

Besides all this action, my grandmother had two angina attacks, at 94, time

is getting quite short. I never can get used to this. She is my best friend.

She keeps telling me I am not aloud to go before her. I keep telling her

that when she gets up there to see what recipe it takes to get all my body

straightened out.

Then, to make things worse my mom was diagnosed with skin cancer. I can't

believe this... my mom makes it through a brain tumour and now this???

The good news is that finally the insurance company is going to pay for my

IV vitamins and minerals, so that is what I am going to be pinned to for the

next ten weeks.

I think I have surpassed my quota of hair-raising events. ...

That's all my news, thanks for asking.

Take care,

> Hi!

>

>

> Hello, .

>

> Just wondering how you are doing...

>

> Regards,

>

> Geoff Crenshaw, ACC -----------------------

> Captain Cook's Cruise Center ** Usual Disclaimers **

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

> Religion: Man's attempt to discover God

> Christianity: God's offer to save humankind

>

>

>

>

[Guest guest]

,

As always, you're amazing. I so admire your strength and courage. As

for your surgery, I'm sorry you might have to go through that but if it

gives you any encouragement, I saw a feature story on either 20/20 or

Dataline where they followed someone who had had brain surgery performed

to relieve his chronic, debilitating back pain. It was pretty

incredible, the surgery went very well with the patient reporting

immediate pain relief even while still on the operating table. They did

a follow-up 3 months later and this guy was doing things he hadn't been

able to do for years, like playing with his kids and he said he felt

great. If this is the same surgery you're facing, I hope you get the

same excellent results if you decide to proceed with it. In the

meantime, I hope your adventures are over and carry a big water gun to

get any cleaners who try to come near you. :}

Hugs,

a Peden

wrote:

>

> From: " " <flight@...>

>

> Hello Geoff,

>

> I guess my silence has some wondering how I am.It is a little bit of

> everything right now. I am not in pain from the AS but I have some pain from

> my trigeminal neuralgia. I have seen a neurosurgeon about operating on me

> I know, you are probably getting the jitters about some doc opening up my

> brain, well you are not alone!!) I am seeing two docs and see what are the

> possibilities but after three years of suffering with this, I am starting to

> want to take my chance on this) . My family doc is terrified on this and

> wants me to see the best surgeon here for that. You see , this operation has

> a 60% chance of side effects: losing my hearing,losing my eyesight or

> falling paralyzed. Not great when I am still young.

>

> Of course my other culprit is my allergies which have pretty well taken over

> my life. Last week, I woke up in the middle of the night completely cut off

> from breathing. You never saw anyone jump out of bed so quick!!! My husband

> was terrified and almost passed out. He never gets used to this. After

> trying everything to help me , we called an ambulance( you know how I hate

> going to the hospitals). Well after I got lots of injections to bring down

> the choking, I was better by morning. I was ready to go home, BUT! This

> cleaning guy had to turn up. I rang for the nurse and said to get that guy

> away from me because I go into anaphylactic shock with the cleaning stuff.

> His response: get this... " your not allergic to that " and turns away. The

> cleaning guy gets even closer and I am making gestures to get away from me,

> BUT NO he is all around my bed washing the floor. I knew that if I stayed in

> that bed for 5 more minutes I would be in serious trouble. I had my oxygen

> mask and the covers up against my face, i ripped out my IV and went out the

> door. I was VERY angry. My husband was coming to pick me up anyways and I

> told him what happened. I THOUGHT, I was home free BUT no... I just walked

> in the door of my house, my nurse had arrived to give me my IV Clindamycin

> and then BOOM! I started to react very badly and I was turning lobster red

> and blue. Both my husband and my nurse wanted to call an ambulance to bring

> me back to the hospital. I gestured , no way!!! I wanted to go to the clinic

> beside me since they have all the equipment for asthmatics and they do know

> me very well. This was the first and last time I walk into this clinic in my

> pyjamas and slippers.

>

> The nurse ran after the doc and jumped on the phone for an ambulance. I

> gestured no way again. This actually terrified the two docs that were there.

> They saw, things were really not going well. I was so swelled up in my face

> and body, it was obvious I wasn't getting enough oxygen.

>

> They just kept giving me adrenalin , benedryl and ventolin and epinephrine

> straight into my lungs and throat. The ambulance guys arrived and the docs

> again tried to convince me to go to the hospital. One ambulance guy had

> brought me in three times before and told the doc that he understood

> completely why I didn't want to go. He did say though that he wasn't going

> to leave until I was out of danger. So, I had two docs, two nurses , two

> ambulance guys and hubby all around me. I felt like it was my last rights.

>

> Things were pretty touch and go for awhile, the intubation equipment came

> out as well as those great little heart paddles since I was in fibrillation.

> Finally, in the end things calmed down and I was dead beat from all the

> adrenalin( felt like I ran a thousand miles).

>

> The docs were quite angry at what happened at the hospital and are writing a

> complaint for putting my life in jeopardy. Hubby called the hospital too.

>

> They say cats have nine lives??? I would say I have pretty well used up all

> of them and more....

>

> Besides all this action, my grandmother had two angina attacks, at 94, time

> is getting quite short. I never can get used to this. She is my best friend.

> She keeps telling me I am not aloud to go before her. I keep telling her

> that when she gets up there to see what recipe it takes to get all my body

> straightened out.

>

> Then, to make things worse my mom was diagnosed with skin cancer. I can't

> believe this... my mom makes it through a brain tumour and now this???

>

> The good news is that finally the insurance company is going to pay for my

> IV vitamins and minerals, so that is what I am going to be pinned to for the

> next ten weeks.

>

> I think I have surpassed my quota of hair-raising events. ...

>

> That's all my news, thanks for asking.

>

> Take care,

>

>

>

[Guest guest]

Hi Ann,

I have Rheumatoid but I just wanted you to know that I have the same

problem with sugar. And chocolate can produce an immediate flare. I

heard mycoplasmas love it. So I stay away and on occassion like a

birthday I have my favorite CAKE and pay for it especially in the early

stages of AP it was awful if I did that. So try and be good and I hope

AP works for your disease.

cooky

annsteve wrote:

>

> hi all,

>

> i've tried to send this before but obviously didn't send it right.

> somewhere in cyberspace - way out there! i have been a 'lurker' for

> quite some time. connie turned me on to your list. thus far, i have

> not seen anyone with my disease but your posts have been interesting.

>

> call what i have a connective tissue disease, auto immune but it is

> quite rare - inclusion body myositis. i won't even begin to bore you

> with the details of where i have been and what i have taken, what they

> have done to me and what i currently take. suffice to say, i have

> been on that dreaded predisone for too long with all of the side

> effects except bone loss. thus, i am the pillsbury dough girl with

> the moon pie face and the buffalo hump. i actually had one of the

> grandchildren make me

> a tee-shirt that says " body by pillsbury dough girl. "

>

> it is interesting about the thyroid problems discussed recently. on

> my way to one of many different diagnosis and during a mylogram, it

> was discovered that i had a thyroid problem. i have been taking

> synthroid since 1995. being a fat little girl, i was put on some kind

> of thyroid medication and that was many years ago. i have also seen

> some discussion of metals - i have high levels of copper

>

> on another list, i met connie and read her posts about AT. lucky me,

> a doctor within 10 miles of where i live was on the list of

> physicians. after a bit of thought, i went to see him and he said

> " well, you're my first inclusion body myositis patient. " no joke!

> well, we started down this path very slow and picked up steam. the

> first few weeks were awful, surely i'd die. i didn't and am now

> feeling better. am i stronger? no. the shininess to my fingers is

> gone. is that a good sign? probably.

>

> boy, have i had a hard time with the water - i hate water but i drink

> and drink and drink some more. and i like the occasional no no treat

> but sugar certainly has an effect on me and it isn't good.

>

> i've enjoyed being a lurker and peaking through the keyhole thank you

> for sharing your knowledge. oh, and if by chance there is another

> ibmer (not big blue) out there, please speak up.

>

> thanks connie and all, create a terrific week!

>

> ann (north carolina)

>

>

>

[Guest guest]

In a message dated 08/03/2000 8:29:21 PM Pacific Daylight Time,

I_shin_den_shin@... writes:

<< I really don't know a whole lot about these two diseases. I was

pretty scared when I found out! I am basically looking for support

and information from others who may share these same problems. >>

Welcome I have Spondylitis as well. I hope you are considering taking

the antibiotics. They really helped me and now I am doing very well. I have

taken them for about 4 years. Please as me or anyone here anything that

bothers you or scares you. You are very fortunate to have discovered this at

a time when there are things we can do about it :-)

[Guest guest]

On Fri, 4 Aug 2000, Murray wrote:

> that I have started a Lupus support group here at eGroups. It is

> called LivingWithLupus. Please feel free to join. Also, I must

> apologize to the moderator of this group for just plugging my group.

> I am sorry. I hope I didn't offend.

Hi ,

That's fine Welcome to the group

Chris.

[Guest guest]

Dear Bev,

Ensure is a bad move as it is loaded with chemicals and brimming with

SUGAR. If you are about to have all that clindamyacin you will get

yourself in yeast problems for sure.

Regardless, sugar is not what you need in a body that is already

not well.

Perhaps someone in the group has a better option. Better still

ask .

Lee-Anne

Bryarwoode@... wrote:

I felt

so weak and crummy this morning I drove to the doctor's office ten

minutes

away and had my blood pressure checked. 110/80.

I seem to be

still

losing weight and they are checking my CPK and I asked them to check

for

nutrient absorption also. I'm running out of things to ask

them to

check.

I tried

to do some chores today and just did myself in, even though it was

just

a few dishes, empty the garbage can, put some laundry in, etc.

I hate

this weakness. The nurse at the doctor's office suggested I

get some

Ensure

to build myself up.

Bev

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Bev,

> I hate this weakness. The nurse at the doctor's office suggested I get some

> Ensure to build myself up.

Janene found Ensure very good and also Sustagen with fibre if you can get

it there - they're similar products but Ensure has extra amino-acids.

Chris.

[Guest guest]

Hi Marietta,

Unlike you I did not have JRA or psoriatic when young, just the

psoriasis as an adult (age 36) -onset simultaneously with the " RA " . Or

is it RA? Who knows. Many like symptoms and lab work positive for the

RA. But the psoriasis is an interesting (morbidly interesting)

component. Like you I have no real damage from 16 years of this. I've

had several short-lived remissions. I've had flares, flares and more

flares. Lotta pain.

To combat, I work-out regularly using weights. I have a diet that is

good - nutritous. I've been on the AP - well, it will be 4 years in

April '05. I've had mixed results in that my labs have been coming down

toward normal ranges very slowly all this time. However, last lab I had

showed a slight worsening in the results.

Clinically there's been ups and downs. On the up side, many areas that

used to be out-of-control painful have subsided completely, ie., neck,

knees, hips, feet and others. But, my hands and shoulders hurt pretty

bad. I'm hoping this will be the last areas to stop hurting eventually.

In the meantime I stay on the AP, using Minocycline, Flagyl - and

flagyl for the the inflammation.

It's very, very important to use acidophilus daily when on these

antibiotics - you probably know that.

Best to you, and let me know if I can help

On Friday, September 3, 2004, at 06:29 PM, Marietta wrote:

> Hi everyone,

>

> I am starting Minocin this weekend.  My history is crazy.  JRA at

> age 10, psoriasis at age 9 (so is it JRA or psoriatic?), remissions

> every few years for no reason, flares for no reason, not much joint

> damage over the years, but plenty of pain.  I'm 32 now, so 22 yrs of

> this! 

>

> In the middle of my last flare earlier this summer, which was AWFUL,

> all my tests came back looking like I had no inflammation going on

> at all.  Very bizarre.  I was on Enbrel, which worked FABULOUSLY for

> 3 yrs after I had my 2nd child, and then stopped working.  I went

> off but my psoriasis flared. 

>

> So I'm combining the Minocin with the Enbrel.  My dr. says it's a

> bizarre combo, we'll see if it kills me <g>

>

> I've tried just about every med out there, and most alternative

> treatments.  Antibiotic treatment is sort of a current last ditch

> effort. 

>

> Wish me luck!

>

> -Marietta

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

<image.tiff>

>

>

<image.tiff>

>

>

[Guest guest]

...I meant to say -- naproxen, not flagyl, for the inflammation.

On Friday, September 3, 2004, at 07:44 PM, King wrote:

> Hi Marietta,

>

> Unlike you I did not have JRA or psoriatic when young, just the

> psoriasis as an adult (age 36) -onset simultaneously with the " RA " . Or

> is it RA? Who knows. Many like symptoms and lab work positive for the

> RA. But the psoriasis is an interesting (morbidly interesting)

> component. Like you I have no real damage from 16 years of this. I've

> had several short-lived remissions. I've had flares, flares and more

> flares. Lotta pain.

>

> To combat, I work-out regularly using weights. I have a diet that is

> good - nutritous. I've been on the AP - well, it will be 4 years in

> April '05. I've had mixed results in that my labs have been coming

> down toward normal ranges very slowly all this time. However, last lab

> I had showed a slight worsening in the results.

>

> Clinically there's been ups and downs. On the up side, many areas that

> used to be out-of-control painful have subsided completely, ie., neck,

> knees, hips, feet and others. But, my hands and shoulders hurt pretty

> bad. I'm hoping this will be the last areas to stop hurting

> eventually. In the meantime I stay on the AP, using Minocycline,

> Flagyl - and flagyl for the the inflammation.

>

> It's very, very important to use acidophilus daily when on these

> antibiotics - you probably know that.

>

> Best to you, and let me know if I can help

>

>

> On Friday, September 3, 2004, at 06:29 PM, Marietta wrote:

>

>> Hi everyone,

>>

>> I am starting Minocin this weekend.  My history is crazy.  JRA at

>> age 10, psoriasis at age 9 (so is it JRA or psoriatic?), remissions

>> every few years for no reason, flares for no reason, not much joint

>> damage over the years, but plenty of pain.  I'm 32 now, so 22 yrs of

>> this! 

>>

>> In the middle of my last flare earlier this summer, which was AWFUL,

>> all my tests came back looking like I had no inflammation going on

>> at all.  Very bizarre.  I was on Enbrel, which worked FABULOUSLY for

>> 3 yrs after I had my 2nd child, and then stopped working.  I went

>> off but my psoriasis flared. 

>>

>> So I'm combining the Minocin with the Enbrel.  My dr. says it's a

>> bizarre combo, we'll see if it kills me <g>

>>

>> I've tried just about every med out there, and most alternative

>> treatments.  Antibiotic treatment is sort of a current last ditch

>> effort. 

>>

>> Wish me luck!

>>

>> -Marietta

>>

>>

>>

>> To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

>>

> <image.tiff>

>>

>>

> <image.tiff>

>>

>>

[Guest guest]

,

Is there a particular brand or kind that has worked well for you?

The kids and I already take a daily cheweable probiotic, but I might need

something more potent with the Minocin.

Marietta

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

It's very, very important to use acidophilus daily when on these

antibiotics - you probably know that.

Best to you, and let me know if I can help

[Guest guest]

Marietta, I get mine from the refrigerated section of the health food

store, I always buy two different brands. There are all kinds of

different strains, so I figure mixing two gives a better opportunity of

getting all that I need. recently i bought the Vitamin Cottage brand of

super lactobacillus. Also the Jarrow, Jarro-dophilus -+fos. That one

has this additive - the FOS that enhances the replication of the

beneficial bacteria. It's a really good brand, listing all the

different strains it contains. I take 2-3 capsules as far away from the

timeframe of taking antibiotics as possible. For instance, I take the

Mino in the morning and the probiotic at night. If I sense any kind of

yeast issue starting up, I stop the antibiotic for a day or two and

triple up on the acidophilus.

One thing I know - I don't want yeast infection issues along with the

inflammatory disease - I think that yeast issues creates body

imbalances which can decrease the efficacy of the AP, and just

generally make you sickly.

LInda

On Friday, September 3, 2004, at 08:01 PM, Marietta Shirk wrote:

> ,

> Is there a particular brand or kind that has worked well for you?

> The kids and I already take a daily cheweable probiotic, but I might

> need something more potent with the Minocin.

> Marietta

>

> It's very, very important to use acidophilus daily when on these

> antibiotics - you probably know that.

> Best to you, and let me know if I can help

>

[Guest guest]

Sandy, thanks for responding...I'm glad to hear your son is doing well with the Starband, that makes me feel better. It just seemed as though everyone feels DOC is the way to go and of course I want the best for Allie. Traveling to Paramus would be such a haul every two weeks.

How old is your son? Was it hard for him to adjust to the helmet?

Re: Hi!

Hi Mindy. You've come to the right place for support and advice. My son has been in his STARband for a little over 2 months. He's done great in it; we've seen really good correction so far. We're using a local orthotist who was referred to us by our pediatric rehabilitation specialist who is overseeing my son's Plagio & Tort treatment. So, if you were referred by a specialist, I'd say you're more than likely going to be dealing with an experienced orthotist.Both bands work the same. I have a friend who's son is in a DOC band and they have to go in every week for an adjustment- and sometimes twice a week. We get our STARband adjusted every 4 weeks, unless you're having fitting issues. Plus, you don't have to go through the casting with a STARband. Good luck with your little girl's treatment. I'm sure she'll do great. SandyMom to Dex- Plagio & TortSTARbanded 2/28/05Texas> Hi everyone...we just joined the group. We just found out that our > daughter needs a helmet and have an appointment tomorrow with > a local certified prosthetist/orthotist who uses the Starband helmet. > We were referred to him by the specialist at Children's Hospital of > Phila. Last night my husband and I were up half the night doing > research and of course read many people's opinions about the DOC band > vs Starband. Do you have any advice for us from your own > experiences? I called the DOC place in Paramus and they said I would > have to send them my insurance info before they could even schedule an > appointment...at that rate it will be atleast a month before we would > even get the helmet- is 6 months old. Do you think there is a > big difference between the two bands and is it worth the wait and > drive for the DOC band? Thanks for your advice. MindyFor more plagio info

[Guest guest]

Sandy, thanks for responding...I'm glad to hear your son is doing well with the Starband, that makes me feel better. It just seemed as though everyone feels DOC is the way to go and of course I want the best for Allie. Traveling to Paramus would be such a haul every two weeks.

How old is your son? Was it hard for him to adjust to the helmet?

Re: Hi!

Hi Mindy. You've come to the right place for support and advice. My son has been in his STARband for a little over 2 months. He's done great in it; we've seen really good correction so far. We're using a local orthotist who was referred to us by our pediatric rehabilitation specialist who is overseeing my son's Plagio & Tort treatment. So, if you were referred by a specialist, I'd say you're more than likely going to be dealing with an experienced orthotist.Both bands work the same. I have a friend who's son is in a DOC band and they have to go in every week for an adjustment- and sometimes twice a week. We get our STARband adjusted every 4 weeks, unless you're having fitting issues. Plus, you don't have to go through the casting with a STARband. Good luck with your little girl's treatment. I'm sure she'll do great. SandyMom to Dex- Plagio & TortSTARbanded 2/28/05Texas> Hi everyone...we just joined the group. We just found out that our > daughter needs a helmet and have an appointment tomorrow with > a local certified prosthetist/orthotist who uses the Starband helmet. > We were referred to him by the specialist at Children's Hospital of > Phila. Last night my husband and I were up half the night doing > research and of course read many people's opinions about the DOC band > vs Starband. Do you have any advice for us from your own > experiences? I called the DOC place in Paramus and they said I would > have to send them my insurance info before they could even schedule an > appointment...at that rate it will be atleast a month before we would > even get the helmet- is 6 months old. Do you think there is a > big difference between the two bands and is it worth the wait and > drive for the DOC band? Thanks for your advice. MindyFor more plagio info

[Guest guest]

Mindy,

Hi and welcome. I can see that you have already gotten good advice

and even some references for you to go on, so I won't repeat. Be sure

to post pictures when you get the band and don't hesitate to ask any

questions you need.

CAROLG

--- In Plagiocephaly , " mmmaloose " <MINDYLOOSE@C...>

wrote:

> Hi everyone...we just joined the group. We just found out that our

> daughter needs a helmet and have an appointment tomorrow

with

> a local certified prosthetist/orthotist who uses the Starband

helmet.

> We were referred to him by the specialist at Children's Hospital of

> Phila. Last night my husband and I were up half the night doing

> research and of course read many people's opinions about the DOC

band

> vs Starband. Do you have any advice for us from your own

> experiences? I called the DOC place in Paramus and they said I

would

> have to send them my insurance info before they could even schedule

an

> appointment...at that rate it will be atleast a month before we

would

> even get the helmet- is 6 months old. Do you think there is

a

> big difference between the two bands and is it worth the wait and

> drive for the DOC band? Thanks for your advice. Mindy

[Guest guest]

Mindy,

Hi and welcome. I can see that you have already gotten good advice

and even some references for you to go on, so I won't repeat. Be sure

to post pictures when you get the band and don't hesitate to ask any

questions you need.

CAROLG

--- In Plagiocephaly , " mmmaloose " <MINDYLOOSE@C...>

wrote:

> Hi everyone...we just joined the group. We just found out that our

> daughter needs a helmet and have an appointment tomorrow

with

> a local certified prosthetist/orthotist who uses the Starband

helmet.

> We were referred to him by the specialist at Children's Hospital of

> Phila. Last night my husband and I were up half the night doing

> research and of course read many people's opinions about the DOC

band

> vs Starband. Do you have any advice for us from your own

> experiences? I called the DOC place in Paramus and they said I

would

> have to send them my insurance info before they could even schedule

an

> appointment...at that rate it will be atleast a month before we

would

> even get the helmet- is 6 months old. Do you think there is

a

> big difference between the two bands and is it worth the wait and

> drive for the DOC band? Thanks for your advice. Mindy

[Guest guest]

Hi Mindy,

Welcome to the group. Which ortho in Philly are you using? Maybe someone has been there. As long as he/she has experience then it shouldn't be an issue. Here is a link to some questions to ask ...

Helmets/Bands: Interviewing the Ortho/Doctor for Information, Experience, and Credentials Compiling a list of questions and concerns to ask your doctor or ortho before making a treatment decision is strongly recommended. You'll want to be fully informed about the product and treatment protocol you'd like to use, as well as be confident that your doctor/ortho has a level of credentials, training and experience in cranial banding with which you are comfortable.

At 6 months waiting a month isn't the end of the world but sooner is better.

mom to na

DOC Grad

Tort Resolved

South Carolina

www.thefilyaws.com

mmmaloose <MINDYLOOSE@...> wrote:

Hi everyone...we just joined the group. We just found out that our daughter needs a helmet and have an appointment tomorrow with a local certified prosthetist/orthotist who uses the Starband helmet. We were referred to him by the specialist at Children's Hospital of Phila. Last night my husband and I were up half the night doing research and of course read many people's opinions about the DOC band vs Starband. Do you have any advice for us from your own experiences? I called the DOC place in Paramus and they said I would have to send them my insurance info before they could even schedule an appointment...at that rate it will be atleast a month before we would even get the helmet- is 6 months old. Do you think there is a big difference between the two bands and is it worth the wait and drive for the

DOC band? Thanks for your advice. MindyFor more plagio info

[Guest guest]

Hi Sherry,

Chase looks great. He's so cute! Good luck at the exit casting. How

about a lollipop? I bet that would distract him. Let us know how you

make out.

>

> Hi I just wanted to point out that I put some new pictures of

> Chase in the C folder. You could delete the older ones since some are

> duplicates. I wanted to put them next to each other to show how nice

> his head looks now! We have the exit cast tomorrow, yikes. I know it

> will be tough cause Chase doesn't use a bottle or pacifier anymore.

>

> Sherry

> Chase (9 1/2 months)

> DOCband grad 5/12

> tort. resolved

>

[Guest guest]

Thanks I know it's much rounder you think it looks good? sometimes

it's hard to be objective being the parent. I'll have to find a

lollipop I forgot for the 1st cast and it was not good. I'll post the

offical pictures tomorrow!

Sherry

> >

> > Hi I just wanted to point out that I put some new pictures

of

> > Chase in the C folder. You could delete the older ones since

some are

> > duplicates. I wanted to put them next to each other to show how

nice

> > his head looks now! We have the exit cast tomorrow, yikes. I

know it

> > will be tough cause Chase doesn't use a bottle or pacifier

anymore.

> >

> > Sherry

> > Chase (9 1/2 months)

> > DOCband grad 5/12

> > tort. resolved

> >

>

[Guest guest]

Sherry,

I do think he looks good. A lollipop will hopefully help you out big

time. I'll be thinking about you guys tomorrow. I can't wait to see

his official pics.

> > >

> > > Hi I just wanted to point out that I put some new pictures

> of

> > > Chase in the C folder. You could delete the older ones since

> some are

> > > duplicates. I wanted to put them next to each other to show how

> nice

> > > his head looks now! We have the exit cast tomorrow, yikes. I

> know it

> > > will be tough cause Chase doesn't use a bottle or pacifier

> anymore.

> > >

> > > Sherry

> > > Chase (9 1/2 months)

> > > DOCband grad 5/12

> > > tort. resolved

> > >

> >

>

[Guest guest]

Welcome. I am sure you will find this board very helpful. Josh is

a cutie! You should recieve great correction as DOC has a great

reputation at what they do and you are starting young. My son had a

DOC band from 7.5-9.5 months and now he is 14 months old and is

doing great and his head looks great too. Good luck on your journey.

>

> Hi all!

>

> I just wanted to introduce myself. My son is 5 months old, but a

> premie. He was born 2 months early and had to stay in the NICU for

a

> month. He is doing very well now though, except that he has severe

> Plagio. One half of his head is 20% larger than the other half

which

> makes one ear higher and one eye higher as well.

>

> He also has a mild case of torticulas (slg?) and has stretching

> excersises that he does several times a day.

>

> His name is Josh and he has just started using his DOC band three

> days ago.

>

> It started our rough...he did not like laying down with it on, but

> things are going well now.

>

> Anyway, I want to give a big wave of hello to all parents out

> there!

>

>

>

[Guest guest]

hi evry one i'm new to this site and i suffer from blepharophamosis

and i would love someone to talk to as i have never spoke to anyone

with the condition so it would be graet to talk to someone, hope to

hear from someone soon alex x

[Guest guest]

Hi , Welcome, isn't this a wonderful group! It is so nice to be able to see other people with the same condition. We have 3 children, our middle child Ethan has BPES. There is a wealth of information here at your finger tips. Emalee Barrowalexcollins_1289 <alexcollins_1289@...> wrote: hi evry one i'm new to this site and i suffer from blepharophamosis and i would love someone to talk to as i have never spoke to anyone with the condition so it would be graet to talk to

someone, hope to hear from someone soon alex xEmalee Barrow

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

hi!!! this is great this is the first time iv'e ever been able to be able to talk to people! it's great and im glad i found this group and just hope i can become friends with new people!! xx

Re: blepharophimosis hi!

Hi ,

Welcome, isn't this a wonderful group! It is so nice to be able to see other people with the same condition. We have 3 children, our middle child Ethan has BPES. There is a wealth of information here at your finger tips.

Emalee Barrowalexcollins_ 1289 <alexcollins_ 1289 (DOT) com> wrote:

hi evry one i'm new to this site and i suffer from blepharophamosis and i would love someone to talk to as i have never spoke to anyone with the condition so it would be graet to talk to someone, hope to hear from someone soon alex x

Emalee Barrow

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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[Guest guest]

hi Clare how r u? well i'm not to sure about the operation what i'm supposed to be having i will have to ask my mom i don't really talk to her much about it infact i never have and i don't know why i feel like i can't? for some reason? so thats why i found this site but i will try and find out for you hope to hear from you soon alex xxxx

Re: blepharophimosis Re: hi!

HI , this is Clare Teale, Hertfordshire, England

Me and my 12 year old have BPES.

Welcome to this amazing site, it is a great way to talk about BPES and living with it. Where abouts in England are you?

We went to Moorfields in London for our operations, we both had muscles put into our eyelids, and then a crease stitched into our eyelid. and other operations too. What is the next operation you spoke about, what will you have done (if you decide to have it done).

Look forward to hearing from you soon.

Clare - Herts UK

alexcollins_ 1289 <alexcollins_ 1289 (DOT) com> wrote:

Hi im from England and sorry but i got that thing wrong the speciallist wasn't from America he just travels around europe. When i was born my mom says that there was only 6 cases of it but she can't remember weather that was just in England or the world but still thats rare! Ive had quite a few operations iv'e also had one where iv'e had to have fake mucels put in the lids and brows of my eyes as when i was born i couldn't open my eyes and iv'e had other operations aswell. When i was born my mom and dad new something was wrong but the doctors wouldn't have it but to be honest my mom thinks that they just kept sayin i'm fine becuase they had no idea what it was! well im supposed to be having another operation and i don't know weather i should! well i hope to hear from you soon xxx-- In blepharophimosis, "" <claire.haun@ ...> wrote:>> Hi ,> > Welcome!! I'm 31 and I've not long discovered that I have bleph. It was > only when my daughter Imogen was born with it as well that we found a > name for it and that I was not the only person in the world with eyes > like this. > This is such a fantastic site, it is awesome that we can share our > stories with each other and know that we are not alone.> I was just wondering what country you are from if you had to have a > specialist flown in from America?> > Cheers> > > > > > > > > >> > hi evry one i'm new to this site and i suffer from blepharophamosis > > and i would love someone to talk to as i have never spoke to anyone > > with the condition so it would be graet to talk to someone, hope to > > hear from someone soon alex x> >>

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