New to the group

[Guest guest]

Hi and welcome. I'm a little late getting to some of these posts so

you have probably gotten all sorts of good responses so far. I'll just add my

own personal two cents. I noticed my daughter's flatness when she was about 4

months. I pointed it out to my ped and he said " it will round out on its

own " . At her 7 month appt it had NOT gotten better and he gave us a referral

to a specialist who wrote an RX for a helmet. We got the helmet when

was 9 months old and we do not regret it one bit. We didn't get 100%

correction, but she looks great now!

We have had quite a few parents here who have used repositioning only and

have gotten excellent results. We have also had parents who used

repositioning and even though they did get some correction they still chose

to band because it wasn't as much as they wanted for their baby.

Your appointment with the specialist will hopefully shed some more light on

the situation and help you with your decision. Best wishes and let us know

what you decide to do.

Marci (Mom to )

Oklahoma

[Guest guest]

Hi and welcome to the group! Its hard to say whether or not a

noggin will round out on its own. Some doctors and specialists feel

that a mild case of plagio will round out on its own over time, but

for more severe cases some type of intervention (helmet/band or

repositioning is needed) With saying that, both of my twins had mild

cases (although one was mild to moderate) and I chose to band anyway,

only because I didn't want to wait and see if thier heads would round

out on their own. It was a chance I wasn't willing to take. And it

is a choice that I have never regretted!

I highly reccommend that you visit the website that Debbie gave you

the link for. It is very informative, and will hopefuuly answer any

other lingering questions that you might have. Please be sure to let

us know how the appointment goes in June! Where are you located?

Maybe someone here can share their experiences if they are from your

area. Good luck , and again welcome to the group!

Niki

Kaylie & DAnny (STAR grads)

Phila., PA

> Hello everyone,

>

> My name is and I've never joined a newsgroup

> before and am not very knowlegeable about newsgroup

> etiquette so please forgive me if I commit a faux pas.

> I would greatly appreciate any advice you could

> offer.

>

> My baby boy is 6 1/2 months old. We first noticed the

> flattening of the back of his head about 3 months ago.

> Our pediatrician assured us that this was quite

> common and that it would round out. Three months

> later, it has improved a little but not much. From

> the front, his ears now look even however, one side is

> still sunken in at least 3/4 inch deeper than the

> other. On his little head, this is very noticeable.

> Our pediatrician has booked us an appointment with a

> specialist for mid June even though she believes it

> will round out. Is this true? Does anyone have a

> baby with plagio whose head evened out without the

> helmet/band? Does anyone regret getting the helmet?

> If I find out that he is borderline for getting a

> helmet/band I'm not sure which way to go. Does anyone

> know plagio babies who are now older children or

> adults who live with the mishapen head?

>

> I would be so greatful for any information or

> experience. I only recently found out that this

> condition was called plagiocephaly. I wish I had

> discovered this site much earlier because I could have

> used the suggested techniques for repositioning. All

> this time, I've just been turning his head using my

> hands, which is often a futile exercise.

>

> Thanks so much

> (Kale's mom)

>

> =====

>

> Lin

> mjl@y...

>

> __________________________________________________

>

[Guest guest]

In a message dated 5/28/2002 9:59:03 AM Eastern Daylight Time, userlko@... writes:

I kept thinking to myself "what took me so long to

make the decision?"

,

I can relate so well to this- especially when your ped is recommending to wait and that its not so bad, and then you hear from other parents and start to wonder if you are really in their shoes and being misguided. It felt like such an enormous decision just to make, but once we did I felt so relieved and have never regretted that decision- just thankful that we did it and saw great results- and then we thought, why was that so hard to make the best decision we could have made!

' Mom

[Guest guest]

,

I too am new to the group. I have two children 3 1/2 and 7 months. My

older so also had plagiocephaly I asked the doctors at EVERY visit about

the flattening of his head they all told me out would round out on it's

own. Well it never did. By the time we found a doctor that would give us

a referral he was two years old and it was to late. His head improved

alittle, but is still flat on one side. My 7 month old has been wearing

a cranial band for 3 months and we have seen a great improvement. The

band has never seemed to bother him.

We are still in the process of appealing denials from our insurance.

[Guest guest]

Hi , Welcome. You have come to the right place! I also

struggled for MONTHS deciding whether to band. Our doctors and

specialists also told us that Jane's case was too mild and that it

would " round out " and yet after 8 months it was actually geting

worse! I took it upon myself to get her DOC banded (and my PED

supported my decision - although she would have recomended just

waiting). The neurosurgeon called her case " mild " and yet she

measured 16MM off in her cranial base, and 8 mm in facial

assymetry..which others I think would classify as Moderate to

severe...so that term MILD is subjective.

I asked the same questions you asked..Did anyone have a bad band

experience? Did anyone regret NOT getting the band?

I was so undecided. BUT, I met someone at the Target store who had a

two year old..and she told me her daughter had plagio and she did not

get her daughter banded,and she looks back and " wonders " . As soon as

I heard that my decision was made. I wanted to be able to look back

and say " I did everything I could for her! " I think that given

time, MAYBE Jane would have turned out OK..but why take the chance?

Our insurance even denied us..but i was not going to let money be the

decinding factor. It is a small price to pay! SO at eight months

we banded Jane. As soon as we did it...Jane never once minded her

band, She slept right through the first night, and she looked so darn

cute in the thing..I kept thinking to myself " what took me so long to

make the decision? " Within three weeks we could already see a huge

correction, and now 12 weeks we are just about ready to graduate. It

went so fast.

I think the most important thig is to educate yourself..and get as

much information. This will really help with your decision. Good

luck!

(mother to Jane)

P.S. We live in Ohio.

)

> Hello everyone,

>

> My name is and I've never joined a newsgroup

> before and am not very knowlegeable about newsgroup

> etiquette so please forgive me if I commit a faux pas.

> I would greatly appreciate any advice you could

> offer.

>

> My baby boy is 6 1/2 months old. We first noticed the

> flattening of the back of his head about 3 months ago.

> Our pediatrician assured us that this was quite

> common and that it would round out. Three months

> later, it has improved a little but not much. From

> the front, his ears now look even however, one side is

> still sunken in at least 3/4 inch deeper than the

> other. On his little head, this is very noticeable.

> Our pediatrician has booked us an appointment with a

> specialist for mid June even though she believes it

> will round out. Is this true? Does anyone have a

> baby with plagio whose head evened out without the

> helmet/band? Does anyone regret getting the helmet?

> If I find out that he is borderline for getting a

> helmet/band I'm not sure which way to go. Does anyone

> know plagio babies who are now older children or

> adults who live with the mishapen head?

>

> I would be so greatful for any information or

> experience. I only recently found out that this

> condition was called plagiocephaly. I wish I had

> discovered this site much earlier because I could have

> used the suggested techniques for repositioning. All

> this time, I've just been turning his head using my

> hands, which is often a futile exercise.

>

> Thanks so much

> (Kale's mom)

>

> =====

>

> Lin

> mjl@y...

>

> __________________________________________________

>

[Guest guest]

Hi , Welcome. You have come to the right place! I also

struggled for MONTHS deciding whether to band. Our doctors and

specialists also told us that Jane's case was too mild and that it

would " round out " and yet after 8 months it was actually geting

worse! I took it upon myself to get her DOC banded (and my PED

supported my decision - although she would have recomended just

waiting). The neurosurgeon called her case " mild " and yet she

measured 16MM off in her cranial base, and 8 mm in facial

assymetry..which others I think would classify as Moderate to

severe...so that term MILD is subjective.

I asked the same questions you asked..Did anyone have a bad band

experience? Did anyone regret NOT getting the band?

I was so undecided. BUT, I met someone at the Target store who had a

two year old..and she told me her daughter had plagio and she did not

get her daughter banded,and she looks back and " wonders " . As soon as

I heard that my decision was made. I wanted to be able to look back

and say " I did everything I could for her! " I think that given

time, MAYBE Jane would have turned out OK..but why take the chance?

Our insurance even denied us..but i was not going to let money be the

decinding factor. It is a small price to pay! SO at eight months

we banded Jane. As soon as we did it...Jane never once minded her

band, She slept right through the first night, and she looked so darn

cute in the thing..I kept thinking to myself " what took me so long to

make the decision? " Within three weeks we could already see a huge

correction, and now 12 weeks we are just about ready to graduate. It

went so fast.

I think the most important thig is to educate yourself..and get as

much information. This will really help with your decision. Good

luck!

(mother to Jane)

P.S. We live in Ohio.

)

> Hello everyone,

>

> My name is and I've never joined a newsgroup

> before and am not very knowlegeable about newsgroup

> etiquette so please forgive me if I commit a faux pas.

> I would greatly appreciate any advice you could

> offer.

>

> My baby boy is 6 1/2 months old. We first noticed the

> flattening of the back of his head about 3 months ago.

> Our pediatrician assured us that this was quite

> common and that it would round out. Three months

> later, it has improved a little but not much. From

> the front, his ears now look even however, one side is

> still sunken in at least 3/4 inch deeper than the

> other. On his little head, this is very noticeable.

> Our pediatrician has booked us an appointment with a

> specialist for mid June even though she believes it

> will round out. Is this true? Does anyone have a

> baby with plagio whose head evened out without the

> helmet/band? Does anyone regret getting the helmet?

> If I find out that he is borderline for getting a

> helmet/band I'm not sure which way to go. Does anyone

> know plagio babies who are now older children or

> adults who live with the mishapen head?

>

> I would be so greatful for any information or

> experience. I only recently found out that this

> condition was called plagiocephaly. I wish I had

> discovered this site much earlier because I could have

> used the suggested techniques for repositioning. All

> this time, I've just been turning his head using my

> hands, which is often a futile exercise.

>

> Thanks so much

> (Kale's mom)

>

> =====

>

> Lin

> mjl@y...

>

> __________________________________________________

>

[Guest guest]

Hi ,

Welcome to the group!! Many Doctors have used the " it will round out "

theory- and many parents have been led down that path later to be told, we

must do something immediately as time is running out. Use this time to

educate yourself as much as you can on plagio, and its causes. In our case,

torticollis (most treatable through pt), a tightening of the neck muscle, was

a factor in worsening our son's plagio, and sometimes Docs do not spot this-

is your child favoring one side? Can he turn his head in both directions?

Does his head seem to tilt to one side? Plagio is not only caused by

torticollis, many factors including the back to sleep campaign and time spent

in bouncers and swings contribute to this problem as well. Your son is at an

optimum age for great results if you decide to band/helmet. We were told

that it would round out, it will get better, but we could not willingly take

that chance (he also had facial asymmetry and misaligned ears) without

regret. We were urged to make a decision asap- the sooner the better- and I

urge you to educate yourself, and make an informed decision on what you feel

is the best treatment for your son- irregardless of what any Doctor tells

you. My Doctor told me how was not bad, his ears were off because

it was an optical illusion, etc., all things you want to hear, but

realistically things that are not true. Now, after he has graduated, she is

forever commenting on how great his head looks! I have never regretted our

decision once, and with the results we were able to achieve, never will!!!

Good luck to you in the beginning of your journey, and please use this Board

as a way to get your answers and pick the brains of many who have been there

done that- they sure helped me a bunch! Keep us posted!

' Mom

[Guest guest]

,

Thank you so much for your welcome. I'm beginning to

see that our doctor's aren't as knowledgeable as we

expect them to be. Reading all these postings these

last few days has really made an impact on me and my

husband. I've learned more in the last few days than

I have in the 3 months I've noticed my baby's

condition.

(Kale's mommy)

--- rella1234@... wrote:

> Hi ,

> Welcome to the group!! Many Doctors have used the

> " it will round out "

> theory- and many parents have been led down that

> path later to be told, we

> must do something immediately as time is running

> out. Use this time to

> educate yourself as much as you can on plagio, and

> its causes. In our case,

> torticollis (most treatable through pt), a

> tightening of the neck muscle, was

> a factor in worsening our son's plagio, and

> sometimes Docs do not spot this-

> is your child favoring one side? Can he turn his

> head in both directions?

> Does his head seem to tilt to one side? Plagio is

> not only caused by

> torticollis, many factors including the back to

> sleep campaign and time spent

> in bouncers and swings contribute to this problem as

> well. Your son is at an

> optimum age for great results if you decide to

> band/helmet. We were told

> that it would round out, it will get better, but we

> could not willingly take

> that chance (he also had facial asymmetry and

> misaligned ears) without

> regret. We were urged to make a decision asap- the

> sooner the better- and I

> urge you to educate yourself, and make an informed

> decision on what you feel

> is the best treatment for your son- irregardless of

> what any Doctor tells

> you. My Doctor told me how was not bad,

> his ears were off because

> it was an optical illusion, etc., all things you

> want to hear, but

> realistically things that are not true. Now, after

> he has graduated, she is

> forever commenting on how great his head looks! I

> have never regretted our

> decision once, and with the results we were able to

> achieve, never will!!!

> Good luck to you in the beginning of your journey,

> and please use this Board

> as a way to get your answers and pick the brains of

> many who have been there

> done that- they sure helped me a bunch! Keep us

> posted!

>

> ' Mom

>

=====

Lin

mjl@...

__________________________________________________

[Guest guest]

,

Your story about meeting someone at target really

impacted me. It had made me really think more

positively about getting the helmet. I feel so much

more educated after reading everyone's stories. I'm

so glad I stumbled on to this site.

(Kale's mommy)

--- userlko <userlko@...> wrote:

> Hi , Welcome. You have come to the right

> place! I also

> struggled for MONTHS deciding whether to band. Our

> doctors and

> specialists also told us that Jane's case was too

> mild and that it

> would " round out " and yet after 8 months it was

> actually geting

> worse! I took it upon myself to get her DOC banded

> (and my PED

> supported my decision - although she would have

> recomended just

> waiting). The neurosurgeon called her case " mild "

> and yet she

> measured 16MM off in her cranial base, and 8 mm in

> facial

> assymetry..which others I think would classify as

> Moderate to

> severe...so that term MILD is subjective.

> I asked the same questions you asked..Did anyone

> have a bad band

> experience? Did anyone regret NOT getting the band?

> I was so undecided. BUT, I met someone at the

> Target store who had a

> two year old..and she told me her daughter had

> plagio and she did not

> get her daughter banded,and she looks back and

> " wonders " . As soon as

> I heard that my decision was made. I wanted to be

> able to look back

> and say " I did everything I could for her! " I

> think that given

> time, MAYBE Jane would have turned out OK..but why

> take the chance?

> Our insurance even denied us..but i was not going to

> let money be the

> decinding factor. It is a small price to pay! SO

> at eight months

> we banded Jane. As soon as we did it...Jane never

> once minded her

> band, She slept right through the first night, and

> she looked so darn

> cute in the thing..I kept thinking to myself " what

> took me so long to

> make the decision? " Within three weeks we could

> already see a huge

> correction, and now 12 weeks we are just about ready

> to graduate. It

> went so fast.

> I think the most important thig is to educate

> yourself..and get as

> much information. This will really help with your

> decision. Good

> luck!

> (mother to Jane)

> P.S. We live in Ohio.

>

>

>

>

=====

Lin

mjl@...

__________________________________________________

[Guest guest]

Debbie,

Thanks for your suggestions. I did visit the site and

those positioning techniques are really good. Thank

you so much for responding.

(Kale's mommy)

--- debbieandabby <dj2kirby@...> wrote:

> Hi & welcome to our group!

> Your post was just fine with absolutely no faux pas

>

> Most pediatrians and even specialists give us

> parents the good

> old " don't worry, his head will round out on it's

> own over time "

> story, or " hair will cover it " . With some babies,

> this may be

> true. We have had a couple of posts from a 27 yr

> old man who had

> untreated plagio & his head is still flat today. My

> daughter is a

> DOCband graduate, wore her band from age 11.5 mos -

> 15.5 mos with

> good correction, although some flatness remains.

> She graduated 11

> mos ago already & unfortunately I haven't noticed

> much improvement on

> it's own w/o the band.

> You are on the right path now though to getting your

> son help. What

> type of specialist will he be seeing next month?

> Have you been to

> www.plagiocephaly.org/support webpage? There's a

> ton of great plagio

> information as well as a great list of " questions

> for the Dr " . You

> might want to consider printing this page out &

> bringing it to the

> specialist with you to ask.

> In the mean time, you could still attempt

> repositioning. There are

> great repositioning tips at the above website I

> listed. Is your son

> sitting up on his own yet? Or playing in the

> exesaucer/walker? If

> so, that helps keep pressure off his head being in

> the upright

> position.

> Your son is still plenty young enough to achieve

> correction, either

> with a helmet or band or with repositioning.

> Welcome again to our group. We look forward to

> getting to know you &

> Kale more

> Debbie Abby's mom 3/1/00 DOCgrad 6/22/01

> MI

>

>

>

>

> > Hello everyone,

> >

> > My name is and I've never joined a

> newsgroup

> > before and am not very knowlegeable about

> newsgroup

> > etiquette so please forgive me if I commit a faux

> pas.

> > I would greatly appreciate any advice you could

> > offer.

> >

> > My baby boy is 6 1/2 months old. We first noticed

> the

> > flattening of the back of his head about 3 months

> ago.

> > Our pediatrician assured us that this was quite

> > common and that it would round out. Three months

> > later, it has improved a little but not much.

> From

> > the front, his ears now look even however, one

> side is

> > still sunken in at least 3/4 inch deeper than the

> > other. On his little head, this is very

> noticeable.

> > Our pediatrician has booked us an appointment with

> a

> > specialist for mid June even though she believes

> it

> > will round out. Is this true? Does anyone have a

> > baby with plagio whose head evened out without the

> > helmet/band? Does anyone regret getting the

> helmet?

> > If I find out that he is borderline for getting a

> > helmet/band I'm not sure which way to go. Does

> anyone

> > know plagio babies who are now older children or

> > adults who live with the mishapen head?

> >

> > I would be so greatful for any information or

> > experience. I only recently found out that this

> > condition was called plagiocephaly. I wish I had

> > discovered this site much earlier because I could

> have

> > used the suggested techniques for repositioning.

> All

> > this time, I've just been turning his head using

> my

> > hands, which is often a futile exercise.

> >

> > Thanks so much

> > (Kale's mom)

> >

> > =====

> >

> > Lin

> > mjl@y...

> >

> > __________________________________________________

> >

[Guest guest]

,

I'm glad your finally getting the answers to your questions you've been

asking for the past 3 months!!!! Please keep us posted on your little one!

' Mom

[Guest guest]

Hi and welcome to the group!

You've come to the right place and I'm sure your going to get lots of

advice! I didn't have any success with repositioning. Due to my

Daughter having torticollis that went undiagnosed for 4 months. I too

was told that my Daughters head would round out. It didn't. My

Daughter got her DOCband when she was 11 months and 1 week old. I

really wish I would of pushed my doctors harder to get her " banded "

at a younger age. Your son is at a great age to see some really good

correction. You have to do what you feel is right for your son. No

doctor can guarantee you that your Son's head will round out. Some do

and some don't. In my opinion, I'd get the band. I know how hard it

is to reposition a 6 month old baby. If your going to get the band,

I'd get the ball rolling now, as it takes sometime. Whatever you

decide to do,you'll have our support.

Good luck and please keep us posted,

> Hi everyone,

> I'm new to the group. I have a beautiful 6 month old boy. I

noticed

> the flat spot on my sons head when he was 2 months old. It was

flat

> on the right side of his head. Our doctor suggested we try

> repositioning him. We did. And it started leveling out by the time

> we went to his 4 month visit. The ped. told us to continue because

> it still didn't look to bad. At his 6 month visit, the entire back

> of his head is flat. It leveled out but it's still flat. The ped.

> still insists that it's nothing to worry about. But, I 'm his

> mother. I suppose to worry. He's a boy. He's not going to get

> enough hair to cover the slope in the back of his head. Should i

not

> worry since my ped. and husband doesn't seem concern. By the time

he

> was 5 months old, it's been getting harder and harder to position

> him. We lay him down on his side, but he moves so much in his

> sleep. He ends up wherever he wants. Advice please???

[Guest guest]

Hi & welcome to our group!

We're glad to have you. You seem to be quite concerned about your

son's headshape and rightfully so. Your pediatrician is giving you

the same " don't worry about it " attitude many of our other group

members have also rec'd. It is important to address your concerns.

Have you asked your pediatrician for a referral to a specialist yet

to have your son's head shape evaluated by someone a bit more

familiar with plagio? Such as a pediatric neurosurgeon? Many of our

members, myself included, were referred to a specialist.

You might want to ask your pediatrician for one. Where abouts do you

live if you don't mind me asking? If you live near a Cranial

Technology (makers of the DOCband) clinic, most clinics offer free

evaluations of the child's head?

Check out www.plagiocephaly.org/support for good repositioning tips

as well as other great plagio information.

The good news is that your son is probably beginning to sit up on his

own therefore, not keeping so much pressure on his head any longer.

If you h ave an exesaucer, try keeping him in that as much as

possible, or a jonny jumper, walker, whatever will keep pressure off

his head.

Good luck. Please keep us posted - welcome again!

Debbie Abby's mom DOCgrad

MI

> Hi everyone,

> I'm new to the group. I have a beautiful 6 month old boy. I

noticed

> the flat spot on my sons head when he was 2 months old. It was

flat

> on the right side of his head. Our doctor suggested we try

> repositioning him. We did. And it started leveling out by the time

> we went to his 4 month visit. The ped. told us to continue because

> it still didn't look to bad. At his 6 month visit, the entire back

> of his head is flat. It leveled out but it's still flat. The ped.

> still insists that it's nothing to worry about. But, I 'm his

> mother. I suppose to worry. He's a boy. He's not going to get

> enough hair to cover the slope in the back of his head. Should i

not

> worry since my ped. and husband doesn't seem concern. By the time

he

> was 5 months old, it's been getting harder and harder to position

> him. We lay him down on his side, but he moves so much in his

> sleep. He ends up wherever he wants. Advice please???

[Guest guest]

Thanks ,

How old is your daughter now and has it helped much? (percentage wise)

I know, i don't want to wait to late. I expressed concerned at this

6 month check up and the doctor and my husband sort of blew it off.

Basically, saying he will be okay. Thanks for the support. I have a

lot to think about and discuss with hubby.

[Guest guest]

Hi, my name is Heidi, and I am now going through the same things you

are. My son was 6 months old when finally I demanded to my peds that

something has to been done. You did the right thing, but as you say,

they end up where he wants. My son would do that too. It got so

hard to keep moving him, trying not to wake him up. Good luck and

welcome to the group. Heidi, mom of Jeffry MN

> Hi everyone,

> I'm new to the group. I have a beautiful 6 month old boy. I

noticed

> the flat spot on my sons head when he was 2 months old. It was

flat

> on the right side of his head. Our doctor suggested we try

> repositioning him. We did. And it started leveling out by the time

> we went to his 4 month visit. The ped. told us to continue because

> it still didn't look to bad. At his 6 month visit, the entire back

> of his head is flat. It leveled out but it's still flat. The ped.

> still insists that it's nothing to worry about. But, I 'm his

> mother. I suppose to worry. He's a boy. He's not going to get

> enough hair to cover the slope in the back of his head. Should i

not

> worry since my ped. and husband doesn't seem concern. By the time

he

> was 5 months old, it's been getting harder and harder to position

> him. We lay him down on his side, but he moves so much in his

> sleep. He ends up wherever he wants. Advice please???

[Guest guest]

Hi,

My Daughter just turned 1 on the 27. I'm not sure I've seen any

improvement yet. She's only been " banded " since July 3. I too was

blown off by my doctors, 3 of them to be exact! Good luck and please

keep us posted!

> Thanks ,

> How old is your daughter now and has it helped much? (percentage

wise)

> I know, i don't want to wait to late. I expressed concerned at

this

> 6 month check up and the doctor and my husband sort of blew it

off.

> Basically, saying he will be okay. Thanks for the support. I have

a

> lot to think about and discuss with hubby.

[Guest guest]

Hello and welcome! Yours is a familiar story I assure you. It is your job to

be concerned and to exercise your mommy instinct. Banding is definitely an

option if you feel that the repositioning has been exhausted. What area are

you from? If you are near a CT clinic you should be able to go in for a free

evaluation or maybe you can pressure your ped into giving you a referral to a

specialist for a second opinion.

Good luck with your decision and let us know if you have more questions or

need some more information.

Marci (Mom to )

Oklahoma

[Guest guest]

I'm am also new to the group I tried repositioning my DD at 3 months. Her head was rounding out and looking better, but she stared to roll around and lay on the flat side.

She has been in PT for 5 months now. We just got her casted for her helmet this week. She did very good she didn't cry at all I think she thought it was a game. She actually laughed. She is getting a helmet made her locally that is the only one the insurance will cover. It is a lot cheaper it only costs $650. They told they have seen great results with this band so I guess time will tell.

[Guest guest]

Thankyou Anita for the positive message.

[Guest guest]

Hi Anita

Wow a fellow UK'er!!

I'm I also have BPES I am 27 yrs old (no one else in my family has

it) Where have you had your surgery? I've had many of my ops done at

fields Eye Hospital in London. My eyes are quite bad & very noticable.

its really interesting to read that your mum has it also & was successful in

having children. I have infertility associated with BPES. - Premature

Ovarian Failure (I did manage to get pregnant before the failure, but Had 6

miscarriages. We had egg donation in 2000 - which worked but resulted in my

7th miscarriage. - what a nightmare!!

I would be interested to know what surgery you have had & if you are having

anymore. Is anyone else in your family affected?

Sorry for the questions

blepharophimosis New to the Group

> Hi. My name is Anita and I'm 36. I was really surprised and pleased

> to find this group for BPES. I've had many operations, from age 2

> yrs to 21 yrs. My mother also has BPES and we've been involved in

> some genetic research in the UK through St 's Hospital in

> Manchester. They're still unable to tell me whether I have Type I or

> Type II BPES but think that it's unlikely that my fertility is

> affected given that my mother has been able to have children.

>

> I've been told that there is now a surgeon specialising in BPES at

> the Manchester Eye Hospital. My surgery was very successful and I'm

> sure there have been improvements since I had my operations. Most

> people don't even notice that I've got anything wrong with my eyes

> until I mention it. My only recollections of being in hospital are

> good memories about friends I made and having time off school rather

> than any of the operations themselves! I had a very normal childhood

> and I hope that this offers some reassurance to parents with newly

> diagnosed children facing surgery.

>

> Anita

>

>

>

>

[Guest guest]

Hi

Sorry for the delay in replying.

I had my surgery at the Manchester Royal Eye Hospital and had about 9

operations in total. Several of the ops were to try to pull the

inner corners of my eyes closer together but they were unsuccessful.

I think that's because of my flat nasal bridge which is a symptom of

BPES. I had plastic surgery to reconstruct my eyelids when I was

about 10. That was by far the worst op as I had to wear patches on

both eyes for about 2 weeks. The last op I had was when I was 21

which another attempt at pulling in the inner corners. I gave up

after that. How many ops did you have?

I'm so sorry to hear about your miscarriages. To have had one is bad

enough but 7 must have been very distressing for you. How did you

find out about the Premature Ovarian Failure?

My mum was the first person to have BPES in our family so there's no

one else affected.

Don't worry about asking lots of questions - it's nice to hear from

someone else in the UK with BPES. I've never met anyone else with

the condition (apart from my mum of course!).

Anita

> Hi Anita

> Wow a fellow UK'er!!

> I'm I also have BPES I am 27 yrs old (no one else in my

family has

> it) Where have you had your surgery? I've had many of my ops done at

> fields Eye Hospital in London. My eyes are quite bad & very

noticable.

> its really interesting to read that your mum has it also & was

successful in

> having children. I have infertility associated with BPES. -

Premature

> Ovarian Failure (I did manage to get pregnant before the failure,

but Had 6

> miscarriages. We had egg donation in 2000 - which worked but

resulted in my

> 7th miscarriage. - what a nightmare!!

> I would be interested to know what surgery you have had & if you

are having

> anymore. Is anyone else in your family affected?

> Sorry for the questions

>

> blepharophimosis New to the Group

>

>

> > Hi. My name is Anita and I'm 36. I was really surprised and

pleased

> > to find this group for BPES. I've had many operations, from age 2

> > yrs to 21 yrs. My mother also has BPES and we've been involved in

> > some genetic research in the UK through St 's Hospital in

> > Manchester. They're still unable to tell me whether I have Type

I or

> > Type II BPES but think that it's unlikely that my fertility is

> > affected given that my mother has been able to have children.

> >

> > I've been told that there is now a surgeon specialising in BPES at

> > the Manchester Eye Hospital. My surgery was very successful and

I'm

> > sure there have been improvements since I had my operations. Most

> > people don't even notice that I've got anything wrong with my eyes

> > until I mention it. My only recollections of being in hospital are

> > good memories about friends I made and having time off school

rather

> > than any of the operations themselves! I had a very normal

childhood

> > and I hope that this offers some reassurance to parents with newly

> > diagnosed children facing surgery.

> >

> > Anita

> >

> >

> >

> >

[Guest guest]

Hi Patty, My name is Jeannette and I have 2 daughters with bpes. I have a 2 1/2 year old and a 9 month old. I have two other children but they are fine. My 9 month old will be having surgery in a few months and my 2 year old may not have to have it at all. But we are not sure yet. My 2 year old daughter is extremely smart and loves to learn from her brother and sister. My 9 month old also has hearing loss to accompany the bpes so that doesn't help her very much. She is a little behind on sitting and crawling but other than that she is doing great. The doctor says she might have some trouble crawling and walking due to her bpes but after the surgery she should speed right back up to normal. I am anxious about the surgery too. If you would like to e-mail me you are welcome to do so. Maybe we can be each other's support. My e-mail address is gmojean@.... hope to hear from you soon.

Jeannette

"thefelton4 <thefelton4@...>" <thefelton4@...> wrote:

My name is Patty and I have a 3 yr. old daughter with BPES. She was diagnosed at birth and inherited it from her father. He had the surgery to correct it and it was quite successful. She has not needed surgery yet but is to have the first procedure to correct the epicathal folds and telecanthus. I also have a 1 yr old son who does not appear to have the gene. His eyes are very wide but he may have a very slight case and needs to see the geneticist eventually. She is now farsighted and just got glasses last month. The doctor did not feel that it was due to the BPES but that children with BPES tend to have vision problems. I have not noticed any developmental delays. She is happy, thriving well and appears to be ahead of most children in her preschool class.I am anxious about the surgery. It's nice to read about all of your experiences. When I first researched this in 1999, the info was very limited and very scarey and there weren't any support groups.Are any of you participating in the research by Dr. Small? Patty

[Guest guest]

Just want to say that I am new to the group. . .

This group is absolutely wonderful. You are such knowledgeable people. I love

to read your posts!!!

Sheryl

Sheryl Illustrations

http://dovedesignsrus.com

[Guest guest]

My youngest son also had a heart murmur at birth. I was told it would heal

itself as well. I guess it did because nothing has ever been heard since

then. When my oldest was a baby i'm not sure if he had reflux, but we

switched his formula to soy because of projectile vomitting after his

bottle. The switch to soy helped out with the projectile, but he still did

alot of spitting up. My youngest had no problem with keeping anything down.

What is VSD? Not sure if i've heard that before.

[Guest guest]

Hi ...Just had a question, You mentioned all the problems that your son had as a baby...reflux...not sleeping through the night...failure to thrive...etc...Do you think that is because he has blephs?...or was this from other reasons?...Our son has blephs, only one in the family who does?...Well so far he has been a dream, he has always been a great sleeper, never been sick, just the odd cold, happy all the time! He has a smile that lights up a room:)... So I was just curious as to what you mean, if you associate all those things with having blephs! To us, he just has narrow eyelids, nothing else...

-- blepharophimosis new to the group

Hello,After 5 years of doc's and people saying "there is something going on w/your son but we can't put our finger on it" we have a diagnosis. I just received the letter from our genetics doctor, he has BPES, they are still unsure of the type, and both my husband and I are unaffected w/the gene. When he was a baby he NEVER slept through the night, was a poor feeder and had severe reflux. He was taken off all milk proteins which cleared him from all reflux medication. He was failure to thrive and both me and our pediatrician at the time both fought the stomach tube and won! Since his ptosis was the only thing detected, although he had a murmur at birth, my pediatrician had enough insight to say that he may have a syndrome, he just didn't know what kind, so we were just happy he was finally over his severe reflux. He did very well for about 2 years. At 3 years old they heard the murmur again (wicked hard to detect even by his cardiologist) and had an irregular ekg and our new pediatrician (We moved to Mass) sent us straight to childrens hospital, he was diagnosed w/a VSD. Since then he has had a tube removed from his ears, found to have conductive hearing loss, tubes put back in, and several procedures to determine why he has a chronic cough. He has polyps on his vocal chords, which he will need voice therapy for. And is once again having problems w/his tubes, his ENT and I see each other regularly!! His VSD seems to be closing on it's own...thankfully! BUT..he has been on medication to stop the racing of his heart, heartrate at 160 at rest and he would get cold and clammy. The meds are working for this, he now has a second cardiologist who specializes in electrophysiology that sees him every 6 months. He was just prescribed glasses. His left eye is MUCH worse than his right, his eyelids are not severely closed but I always get comments from people everywhere I go at how tired he looks. I am happy to find a support group! I feel truly blessed that he has only had a few surgeries and surgical procedures in his lifetime. And am very thankful that he is so active funny and doing so well in school. I would love to correspond w/someone in the same situation with me. 'Thanks for listening to me babble on and on!! Kristyn