New member with questions

[Guest guest]

Elena,

Welcome to the group! Just wanted to share that when I read about one side getting flat, it reminds me of my son, , who has torticollis, a tight neck muscle that made him favor one side. He would only turn his head right, and had limited rotation to the left. Also, he would tilt his head. Just wanted to let you know about this and if any of that applies, you need to talk to your Doc about physical therapy. It is important, if your son has tort, to treat the tort so that the plagio can be further prevented. (My son would favor turning right, therefore, he "rubbed" a flat spot on the back right, which in turn started creating ear misalignment, facial asymmetry). Not all cases like yours are caused by torticollis, but I would rather inform you than not, just in case! If you have any questions about this, please ask away! Good luck to you!

' Mom

[Guest guest]

Wow,

I just joined the group today. Aileen has flat back right also and is 81/2

mos. old. We are trying to make a descion to get the doc band in Oakbrook

Il. only 8mls. from us. We think we are going with it. Confused because we

have seen improvement in the lat 4 weeks. Have you seen improvement? Are

you definitely banding?

Sheila/chicago

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

From: " Elena Nagel " <sailadvntrs@...>

<Plagiocephaly >

Sent: Tuesday, November 20, 2001 1:15 PM

Subject: New member with questions

> Hello,

> I am new to the group. My name is Elena. My son,

> Jake, is 8 1/2 months. He has been diagnosed with

> Plagiocephaly (flat back right). We are located in

> the metro Detroit area. I am trying to read all of

> the info on the websites and mail. So much info. We

> currently have HAP insurance and they have refused to

> pay. I am trying to put the appeals letter/packet

> together. Not much help from Ped or NeuroSurg. The

> only HAP approved facility is & Fillipis. Not

> sure at this moment what types of ortho they use. I

> would appreciate some info from the MI parents... Do

> any of you have HAP? Where did your child go for

> treatment? What type of ortho? Are you paying for

> the treatment or is insurance? Thanks for your help.

> Elena, Jake's mom

>

>

> __________________________________________________

>

[Guest guest]

Elena, welcome to the group. There are a few Michiganders and even a

couple of metro Detroiters here. We are in Detroit. I've never

heard of & Fillipis. We started helmet therapy when my

daughter was just over 8 months old and we used the University of

Michigan helmet. I know that Detroit Children's Hospital also does

their own helmet, but I don't know anything about it. I know a few

people that got good results with the UofM helmet (it is passive),

but we didn't. We never got a good fit with the helmet. Now we are

travelling out of state for the DOCband. Luckily our insurance paid

for both treatments (not HAP). Honestly though, Kendall's head was

severe so I would have paid for it even if insurance didn't. I know

a lot of places will allow payment plans. I of course don't know how

severe your son is, but if you have decided that helmet therapy is

what you want to do, then I wouldn't wait for the appeals process

since Jake is already 8.5 months old. If you have a rejection from

your insurance, I believe you can go ahead and begin therapy, and

work on the appeal after you start therapy. I'm sorry you aren't

getting much help from the docs. Take some pictures of his head.

That seemed to do the trick for us to get it paid for when we went

out of plan. Good luck to you. Let us know how it goes and what you

decide to do.

Debbie and Kendall

> Hello,

> I am new to the group. My name is Elena. My son,

> Jake, is 8 1/2 months. He has been diagnosed with

> Plagiocephaly (flat back right). We are located in

> the metro Detroit area. I am trying to read all of

> the info on the websites and mail. So much info. We

> currently have HAP insurance and they have refused to

> pay. I am trying to put the appeals letter/packet

> together. Not much help from Ped or NeuroSurg. The

> only HAP approved facility is & Fillipis. Not

> sure at this moment what types of ortho they use. I

> would appreciate some info from the MI parents... Do

> any of you have HAP? Where did your child go for

> treatment? What type of ortho? Are you paying for

> the treatment or is insurance? Thanks for your help.

> Elena, Jake's mom

>

>

> __________________________________________________

>

[Guest guest]

Hi Elena:

Welcome to our group! I'm sorry to hear that your ped or neuro aren't

being of any help with your insurance fight. I live in MI, but about

150 miles West of you. My daughter, Abby who's now 20 mos old, wore

both a STARband & DOCband. We had no success with her STARband which

we rec'd from a local hospital, so we switched to the DOCband, which

we drove to Chicago Cranial Technologies for bi-weekly. I also have

never heard of & Fillipis. I did not have HAP insurance

either, my insurance covered Abby's band as Durable Medical

Equipment, covering 50%. For more information on your insurance

battle, go into the Files section in this site, then Help Folder,

then Insurance. Maybe there is some info in there that could help.

Again, I welcome you, please stick around and keep us updated on

Jake's band/helmet if you get him one. Good luck with your insurance

battle.

Debbie Abby's mom 3/1/00 STARband 11/7/00-1/26/01 DOCgrad 2/16/01-

6/22/01

MI

> Hello,

> I am new to the group. My name is Elena. My son,

> Jake, is 8 1/2 months. He has been diagnosed with

> Plagiocephaly (flat back right). We are located in

> the metro Detroit area. I am trying to read all of

> the info on the websites and mail. So much info. We

> currently have HAP insurance and they have refused to

> pay. I am trying to put the appeals letter/packet

> together. Not much help from Ped or NeuroSurg. The

> only HAP approved facility is & Fillipis. Not

> sure at this moment what types of ortho they use. I

> would appreciate some info from the MI parents... Do

> any of you have HAP? Where did your child go for

> treatment? What type of ortho? Are you paying for

> the treatment or is insurance? Thanks for your help.

> Elena, Jake's mom

>

>

> __________________________________________________

>

[Guest guest]

Elena,

I'm not from Michigan, but I did what to jump in and welcome you to the group

and maybe answer a few of your questions.

Many of us here have had trouble getting our insurance to pay. If your neuro

and ped won't help with letters of medical necessity it will be more

difficult. I would encourage you to go through the entire appeals process

despite not having letters of medical necessity. Check the files section of

this group for some help with that.

In regards to the type of orthotic device it sounds like you will be getting

a STARband or passive helmet. The clinic you mentioned does not sound like a

DOCband clinic. I would encourage you to call the clinic and ask what kind of

device they use and really ask a lot of questions about their experience with

the device and working with infants. You might ask how many babies they have

treated and if you can visit the office and see some samples of the band and

maybe see some photos of babies they have treated. Really interview the

orthotist because that person makes the difference between a successful or

unsuccessful experience.

I'm glad you have joined our group and I hope you will stick with us! I think

you will find this group to be an outstanding source of support, answers and

friendship. Best wishes.

Marci (Mom to )

Oklahoma

[Guest guest]

At 05:29 PM 11/21/01 -0500, marcisch@... wrote:

>In regards to the type of orthotic device it sounds like you will be getting

>a STARband or passive helmet.

I thought the STARband was an active helmet. (STAR= symmetry through active

remolding). What's the difference between an active helmet and a passive

helmet?

Thanks

Debi and (casted 11/12/01)

[Guest guest]

I thought the STARband was an active helmet. (STAR= symmetry through

active

> remolding). What's the difference between an active helmet and a

passive

> helmet?

Debi:

An active band is one that applies VERY mild pressure to the " good,

round " side of the child's head to retard that growth ever so

slightly and to help " push " the flat side out.

A passive helmet is a locally made device that does not apply any

pressures to the child's head, it simply allows room in the helmet

for the flat side to grow into.

Usually bands are active and are either the STARband made by

Orthomercia or the DOCband made by Cranial Technologies. Usually

helmets are locally made and entire the child's head w/o any opening

on top.

Hope that helps!

Debbie Abby's mom DOCGrad 6/22/01

MI

Happy Thanksgiving

[Guest guest]

I think I should have said EITHER a STARband OR a passive helmet. Yes, the

STARband is dynamic. Sorry for the syntax problem.

Marci

[Guest guest]

Hi Elena,

I just wanted to jump on the welcome band wagon here and say howdy.

I'm really don't have more to add to the info that you've already

gotten, other than don't give up on the appeals process. A lot of

members have had their insurance cough up the money after their child

was done with the band/helmet. Good luck to you and Jake and be sure

to keep us up to date!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello,

> I am new to the group. My name is Elena. My son,

> Jake, is 8 1/2 months. He has been diagnosed with

> Plagiocephaly (flat back right). We are located in

> the metro Detroit area. I am trying to read all of

> the info on the websites and mail. So much info. We

> currently have HAP insurance and they have refused to

> pay. I am trying to put the appeals letter/packet

> together. Not much help from Ped or NeuroSurg. The

> only HAP approved facility is & Fillipis. Not

> sure at this moment what types of ortho they use. I

> would appreciate some info from the MI parents... Do

> any of you have HAP? Where did your child go for

> treatment? What type of ortho? Are you paying for

> the treatment or is insurance? Thanks for your help.

> Elena, Jake's mom

>

>

> __________________________________________________

>

[Guest guest]

Hi list

I am a new member from Switzerland and I'd like to ask a few questions.

Being sick with a lot of unpleasant symptoms (fatigue, sensitivity to

odors, smoke, memory problems and a lot more) I'd like to make my apartment

as free from toxins and molds as possible.

-- Some of my old furniture and books come from antique and thrift stores,

so I guess I have to get rid of them?

-- What about old oriental carpets (Kelims) I got from my parents? Better

get rid of them? There is wooden floor underneath.

-- Should I get a new mattress and new blankets for my bed? Some of them I

already had when I was living in an apartment with mold in the sleeping

room. :-( Or is it enough to wash them?

-- Can I have plants and cut flowers in my living room? Or better not?

-- Do I need air filters?

-- What did others do to have a safe living area?

I would be very glad if somebody could answer those questions. I am aware

that there is a lot to learn and experiment for me, I also started reading

the archives, but it will take me quite some time to get through them.

Thank you in advance, and all the best

nne

[Guest guest]

,

I must disagree with you in your statement that " only bleach really

kills mold " . Bleach does NOT kill mold. Bleach changes the colors of

things, for instance, if you bleach a spot on your wall, bleach will

make it " appear to be clean " , but it always comes back. Why? Because,

bleach changes the color to white. This makes it very hard for the

consultants to be able to determine where the leak originated from

since they rely on the water stains to help guide them to the source.

Also, bleach is a water soluble solution. So, when you apply bleach

to something that has mold, it will actually water the roots of the

mold causing it to grow. This is why people that have used bleach on

mold have to repeatedly apply the bleach.

Bleach also produces off-gasing. This off-gasing can be fatal,

especially to someone with asthma. Last year when we were going

through our exposure, it was recommended by EPA and other agencies to

bleach it. However, this has been REMOVED from all the litature. It

now says use detergent and water. Again, the water isn't good for the

mold as it is what causes it to grow, but the detergent is much better

than the bleach.

So, please, do more research on bleach before making a recommendation.

The research that posted is also good reference material.

Clorox is a big company, if you notice, EPA and other agencies are

quietly taking off bleach as a viable solution to mold problems.

Larkin, Director

Mold Relief, Inc.

> I'll give my thoughts after your questions. Mine will be in bold

type

> ----- Original Message -----

> From: nne Sievert

>

> Sent: Saturday, October 25, 2003 9:51 AM

> Subject: [] New member with questions

>

>

>

> Hi list

>

> I am a new member from Switzerland and I'd like to ask a few

questions.

>

> Being sick with a lot of unpleasant symptoms (fatigue,

sensitivity to

> odors, smoke, memory problems and a lot more) I'd like to make my

apartment

> as free from toxins and molds as possible.

>

> -- Some of my old furniture and books come from antique and thrift

stores,

> so I guess I have to get rid of them?

>

> Yes, get rid of them. Your health is more important. It's hard.

>

> -- What about old oriental carpets (Kelims) I got from my parents?

Better

> get rid of them? There is wooden floor underneath.

>

> You can try to have them professionally dry cleaned a couple of

times - National Allergy supply carries a spray and powder, also, that

you scrub into a carpet (very carefully), let dry and vacuum up. Mold

spores are nasty. Hard to remove from fabric. Best bet would be to

(sorry) sell the carpets.

>

> -- Should I get a new mattress and new blankets for my bed? Some

of them I

> already had when I was living in an apartment with mold in the

sleeping

> room. :-( Or is it enough to wash them?

>

> Yes, new mattress and blankets. Why feel sick and be uncertain if

it is the blankets and mattress. Or, you can try to wash and wash

them. However, only bleach really kills mold and that will also kill

your mattress and blankets.

>

> -- Can I have plants and cut flowers in my living room? Or better

not?

>

> Molds are in soil and if you are sensitive, then don't have them

indoors. Or just keep them out of the bedroom.

>

> -- Do I need air filters?

>

> Yes, definitely. Especially if you have become extremely

sensitized.

>

> -- What did others do to have a safe living area?

>

> Removed all carpeting and padding in basement (professionally - it

made me too sick to even go down there), had walls and ceilings torn

out by remediation company to find out how far the mold extended. Saw

that it is a problem that cannot be fixed, have put it on the market,

trying to sell. In lawsuit. Still sick, though less so than when it

all started. A hellish experience.

>

> I would be very glad if somebody could answer those questions. I

am aware

> that there is a lot to learn and experiment for me, I also started

reading

> the archives, but it will take me quite some time to get through

them.

>

> Thank you in advance, and all the best

> nne

>

>

>

>

>

>

>

>

>

[Guest guest]

I said what I said because of Dr. Eckhardt Johanning who is the nationally recognized researcher of mold in the U.S.. He conducts a mold and bioaerosol symposium almost every year in Saratoga NY. He is the director of the fungal research group

www.fungalresearchgroup.com

that supervises research on this subject here and in Europe. I am not submitting information that is gotten second hand via hearsay or just because I felt like saying it.

Also, the company that did the remediation, EnviroTech, used an extremely high concentration industrial bleach. In fact, they state, as does the doctor, that only a 10 % solution of bleach does the job if a client wants to wipe other things down. You damage yourself by breathing the bleach fumes to use a higher concentration.

So we disagree.

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

From: Larkin

Sent: Monday, October 27, 2003 8:02 PM

Subject: [] Re: New member with questions

,I must disagree with you in your statement that "only bleach reallykills mold". Bleach does NOT kill mold. Bleach changes the colors ofthings, for instance, if you bleach a spot on your wall, bleach willmake it "appear to be clean", but it always comes back. Why? Because,bleach changes the color to white. This makes it very hard for theconsultants to be able to determine where the leak originated fromsince they rely on the water stains to help guide them to the source.Also, bleach is a water soluble solution. So, when you apply bleachto something that has mold, it will actually water the roots of themold causing it to grow. This is why people that have used bleach onmold have to repeatedly apply the bleach. Bleach also produces off-gasing. This off-gasing can be fatal,especially to someone with asthma. Last year when we were goingthrough our exposure, it was recommended by EPA and other agencies tobleach it. However, this has been REMOVED from all the litature. Itnow says use detergent and water. Again, the water isn't good for themold as it is what causes it to grow, but the detergent is much betterthan the bleach. So, please, do more research on bleach before making a recommendation.The research that posted is also good reference material. Clorox is a big company, if you notice, EPA and other agencies arequietly taking off bleach as a viable solution to mold problems. Larkin, DirectorMold Relief, Inc.> I'll give my thoughts after your questions. Mine will be in boldtype> ----- Original Message ----- > From: nne Sievert > > Sent: Saturday, October 25, 2003 9:51 AM> Subject: [] New member with questions> > > > Hi list> > I am a new member from Switzerland and I'd like to ask a fewquestions.> > Being sick with a lot of unpleasant symptoms (fatigue,sensitivity to > odors, smoke, memory problems and a lot more) I'd like to make myapartment > as free from toxins and molds as possible.> > -- Some of my old furniture and books come from antique and thriftstores, > so I guess I have to get rid of them?> > Yes, get rid of them. Your health is more important. It's hard.> > -- What about old oriental carpets (Kelims) I got from my parents?Better > get rid of them? There is wooden floor underneath.> > You can try to have them professionally dry cleaned a couple oftimes - National Allergy supply carries a spray and powder, also, thatyou scrub into a carpet (very carefully), let dry and vacuum up. Moldspores are nasty. Hard to remove from fabric. Best bet would be to(sorry) sell the carpets.> > -- Should I get a new mattress and new blankets for my bed? Someof them I > already had when I was living in an apartment with mold in thesleeping > room. :-( Or is it enough to wash them?> > Yes, new mattress and blankets. Why feel sick and be uncertain ifit is the blankets and mattress. Or, you can try to wash and washthem. However, only bleach really kills mold and that will also killyour mattress and blankets.> > -- Can I have plants and cut flowers in my living room? Or betternot?> > Molds are in soil and if you are sensitive, then don't have themindoors. Or just keep them out of the bedroom.> > -- Do I need air filters?> > Yes, definitely. Especially if you have become extremelysensitized.> > -- What did others do to have a safe living area?> > Removed all carpeting and padding in basement (professionally - itmade me too sick to even go down there), had walls and ceilings tornout by remediation company to find out how far the mold extended. Sawthat it is a problem that cannot be fixed, have put it on the market,trying to sell. In lawsuit. Still sick, though less so than when itall started. A hellish experience.> > I would be very glad if somebody could answer those questions. Iam aware > that there is a lot to learn and experiment for me, I also startedreading > the archives, but it will take me quite some time to get throughthem.> > Thank you in advance, and all the best> nne> > > > > > > > >

[Guest guest]

Hi Kasia,

It is great to hear of someone else in Cork, what part are you living in?!!

Thanks for your Fast reply and you are right I think the support and confidence

will be as helpful as any info I will get!

I'm sorry to hear that you are dealing with fertility problems at the moment,

hopefully it's working out good for you.

Pam

>

> Hi Pam,

>

> since March last year I'm a member of this group - there are so many helping

> people over here - thank you all once again!

>

> Thanks to this group I've learned a lot about BPES & relating POF, so I'm

> sure this group will provide you with all needed information and even more

> needed in most cases - support and confidence.

>

> I'm writing because I'm living in Cork too I'm 29 and currently dealing

> with some fertility problems - not yet POF but close, every day closer...

>

> Feel free to contact me directly.

>

> Kasia

>

> 2010/4/17 hurleypamela11 <hurleypamela11@...>

>

> >

> >

> > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.

> > I have not yet been officially diagnoised, but I am 99% sure. I am

> > currently waiting for a genetic consult to try and get some answers. In the

> > mean time, I just want to know if I am the only person who looks like me cos

> > all the photos show relly cute kids and any adults don't look like I do.

> >

> > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae

> > who diagnoised me with ovarian cysts, which resolved themselves. However,

> > now my periods are 3 months apart and i was just wondering if anyone else

> > has had this?

> >

> > Any feedback would be soooooooo welcome, thanks

> >

> >

> >

>

[Guest guest]

Hi Clare,

You don't know how good it is to hear that you have been blessed with 2 children

in spite of " really weird " periods! I Have put 2 pics up in the photos section,

thanks for replying to me and i'll be looking back for those posts!!

Pam

> >

> > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.

> > I have not yet been officially diagnoised, but I am 99% sure. I am currently

waiting for a genetic consult to try and get some answers. In the mean time, I

just want to know if I am the only person who looks like me cos all the photos

show relly cute kids and any adults don't look like I do.

> >

> > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae

who diagnoised me with ovarian cysts, which resolved themselves. However, now my

periods are 3 months apart and i was just wondering if anyone else has had this?

> >

> > Any feedback would be soooooooo welcome, thanks

> >

>

[Guest guest]

HI Pam

I have had a look at your pics, and of course you need to wait for a 'professional' diagnosis, but you look a lot like a lot of adults I have seen with BPES.

I have had 2 ops, when I was in my teens, and so has my daughter. (she had her ops at 4 - because her vision was being affected).

Please feel free to ask questions, and explore as much as you can. I am also a Personal Development Trainer, Motivational Trainer, and Life Coach. So if you want any info about confidence support etc, just send over an email.

Good luck with your results.

Clare Teale - Herts UK

From: hurleypamela11 <hurleypamela11@...>Subject: blepharophimosis Re: New Member with Questionsblepharophimosis Date: Sunday, 18 April, 2010, 20:41

Hi Clare,You don't know how good it is to hear that you have been blessed with 2 children in spite of "really weird" periods! I Have put 2 pics up in the photos section, thanks for replying to me and i'll be looking back for those posts!!Pam> >> > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.> > I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do.> > > > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this?> > > > Any feedback would be soooooooo welcome, thanks > >>

[Guest guest]

Hi Pam, & welcome!

I am 35 years old and live in Florida, USA. I too have never been officially

diagnosed (that I know of or can find). You are not the only person that looks

like you! In fact I think you look quite similar to me... you can check out my

pictures in the photo section. I believe my album is listed as " Tots " .

Since I have discovered BPES, only about 6 months ago, I have found so many

people who look like us. I don't know if you are a Facebook member but there

are BPES groups over there and I've had the opportunity to connect with many

women who have shared so much.

I had posted a rather long-winded account in response to a member over on

Facebook that I think may be of interest to you so I will copy & paste it

here.... I think we share a lot in common and if nothing else,it may just help

you feel not so alone...

I do not know what type of BPES I have... I have never gone to a geneticist nor

ever had an official diagnosis of BPES. I'm self diagnosed I guess you would

say... I had vaguely remembered my Mom telling me when I was little that there

was a medical name for what was going on with my eyes but never remember her

telling me the name. My Mom passed away 3 years ago and my Dad has no clue...

Men! About 6 months ago, having recently being married and thinking about

starting a family, my curiosity peaked about it all, & just wondering what the

eye thing was called and if it was something I could pass to a child. We have

no medical records of any of my surgeries, etc. I searched for my eye Dr. who

was located in Manhattan only to find he died back in the 90's. I tried to call

Manhattan Eye Ear & Throat hospital where I had all my surgeries and they

informed me that all records are destroyed after 20 years, so nothing... So I

hit the internet... I just Googled " eyelid birth defect " & " eyelid deformity "

and for hours one by one read the descriptions of every condition in the search

results... if the description sounded remotely like me I'd then Google Image the

disorder to see if the pictures looked like me... about 8 hours into it I found

BPES and when I saw the pictures my whole body sort of just went numb... I knew

it just had to be it! My husband & I had already spoke about the possibility of

me passing " my eye condition " on to a child before I researched and we already

agreed that it wouldn't matter, it's not such a very terrible thing, he would

love if our child looked like me and who better to raise a child with it then

someone who's been through it... so my searching was just a matter of satisfying

my curiosity. So it was then that I discovered that it is an autosomal dominant

gene defect so the chances are quite great that I could pass it on, which still

has not deterred us. It was also only then that I discovered the correlation of

infertility & POF etc. in women who had type I. My heart fell into the pit of

my stomach... I have had a very strange menstrual history & never in a million

years would I have thought it was related to my eyes... I was almost 18 years

old before I got my first period. My mother tried to get me to go to the Gyno

but I was mortified and terrified of some horrible news even to the point of

CRAZY like the Dr. would tell me... " well you're really a man and you might grow

a penis any day now " ... I know, crazy! But that's what your mind can do to you

after 2-6 years of all your friends all getting their periods but not you.

Anyway, even after getting my period at almost 18 they were never regular ever

since... I can go up to 6 months without getting a period then 3 months in a row

with a period then skip a month, then get the next two months in a row... never

any rhyme or reason to it... and they are typically very light and last about 3

days, almost never any cramps or PMS. Once I finally did get my period and was

assured I wouldn't be growing a penis any day soon, I finally got myself to see

a gyno who just time after time kept telling me " Girl, your too skinny, that's

why your periods are so few and irregular " I would question " but is there

something wrong? Will I be able to get pregnant? " and the Dr would ask " why are

you trying? " " If not then don't worry about it now. Trust me when you're ready

we'll get you to have a baby " ... I think gynos should really be educated more

about BPES & the link. So fast forward to now, I moved here to FL from NY about

a year & ½ ago and have a new Dr. who actually IS AWARE of BPES & fertility

complications.

Since December I have had so much testing... ultra sounds, sonograms, blood work

I feel like I live at the Dr. office.... At the start they found I had cysts on

my ovaries and thought that my problem might have been PCOS poly cystic ovarian

syndrome. The cysts cleared up by the very next month and haven't been back

since. I also didn't show the other symptoms associated with that such as

overweight, insulin resistance, painful periods, heavy periods, extra periods...

Dr. performed an HSG (Hysterosalpingogram) to find that there is some sort of

abnormality in the upperside of my uterus as well as the tube being blocked at

that side.

Many blood tests on magical day 4 of my cycle to test FSH (folice stimulating

hormone). The number they are looking is ideally 10 or less. My numbers came

back 13 and up to 16. Not great but not a lost cause. I am told my eggs are

do-able but it may be a bit more difficult... I'm also heading on 36 years old

which is not old enough for those numbers but can be a factor. Dr. doesn't

however, feel that it is POF, yet but has cautioned me that we cannot totally

rule that out especially without a diagnosis on my type of BPES.

[i need to add a little aside here... Miraculously, for the last 6 months in a

row I have gotten my period... I think it was a life record for me! The cycle

lengths weren't very consistent over the 6 months ranging from 28 to 34 days

but they happened 6 months in a row!]

Dr. performed another blood test for another hormone AMH anti-mullerian hormone

these numbers were excellent and totally contradicted the bad FSH.

So to conclude, here's the course of action the Dr. & us have set out on...

Dr. feels my eggs are still doable and worth a shot. Abnormality in Uterus

poses a big problem for an embryo to attach and or carrying a pregnancy to term.

So a Hysteroscopy procedure is necessary to address & hopefully repair the

uterus. Since it's a procedure which is to be done in the hospital under

general anesthesia I agreed to also have a laporoscopy done to address & try &

repair the blocked tube. The Dr. is not concerned with the tube issue because I

do have one good one and the ovaries seem to be functioning adequately enough

but since I will already be under, we might as well take care of everything we

can & it will only help increase our chances.

After the surgery Dr. said we could take an ovulation enhancing med. and try the

traditional way and or do some IUI Intrauterine insemination for an extra boost.

Then move onto IVF if we have to.

Our insurance does not cover any infertility anything so we too know how

terribly expensive all of this is. We of course hope the less expensive methods

will work but we're trying to save as much as we can to prepare if we need it.

I feel like I am at a stalemate with trying to get this surgery underway. As

with all of this fertility stuff everything is timed to your period. I have to

wait to get my period & have the surgery scheduled for ASAP after I stop

bleeding. So surgery plan was made last month after my period, so no biggie

right? I'm on a lucky streak... I've got my period 6 months in a row... I just

have to wait 2 more weeks to get my period. I think that's where the Dr. jinxed

me Says " oh by the way, I know you have a history of going months without a

period. If it doesn't come within the week it's supposed to just call me. we

can give you some meds. to force one on. You'll take a pill for 5 days, you

should start to bleed 5 days after that then we can schedule the surgery for as

soon as you stop bleeding & surgeries are typically scheduled for a Friday " . My

friend is getting married on May 15th up in NY so I have that trip planned. I

asked the doc if it's ok to travel & how soon he said I'd be fine to travel

within just a few days of the surgery. So now I'm frantically counting days. So

best case scenario, I get my period when I'm supposed to on or around April 3rd

and can be in for surgery by April 9th. If no period then I can start meds April

12th & should be ready for surgery by April 23rd.

Of course, wouldn't you know... NO PERIOD! I call the doc April 7th & they tell

me it's still too soon... wait another week & if nothing then call... UGGGG!

The Afternoon of Saturday, the 10th I started spotting and by night it just

stopped and nothing more! Call Doc back on monday they send me out for blood

work on Tuesday. (blood work was for a pregnancy test... If only I could be so

lucky... but no). Wednesday they had me in for another ultra sound to be sure

that my ovaries looked ok and it's not the cysts back... at least that was good

the Dr even said " I'm actually VERY pleased with how your ovaries look today " .

I guess the spotting wasn't good enough because he's made me start the meds

which I have to take through Sunday. Then wait at least 5 days before I bleed.

However, Doc. said I might not even bleed but don't worry if 10 days go by after

the last pill and no bleed just call & they'll get me in for surgery anyway.

Really? Why couldn't they have just put me in now then? Oh well... so now I'm

really hoping to have the surgery done by the 30th (which only gives me a week

and a half before I leave for NY). Well that about sums up where I'm at now.

All the best to you!

Melbourne, FL-USA

--- In blepharophimosis , " hurleypamela11 " <hurleypamela11@...>

wrote:

>

> Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.

> I have not yet been officially diagnoised, but I am 99% sure. I am currently

waiting for a genetic consult to try and get some answers. In the mean time, I

just want to know if I am the only person who looks like me cos all the photos

show relly cute kids and any adults don't look like I do.

>

> My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who

diagnoised me with ovarian cysts, which resolved themselves. However, now my

periods are 3 months apart and i was just wondering if anyone else has had this?

>

> Any feedback would be soooooooo welcome, thanks

>

[Guest guest]

Hi Clare,

Thanks it's the waiting is the most frustrating part now!Thanks for your offer

and I will probably be asking for your expertise at some point alright!!

Pam

> > >

> > > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.

> > > I have not yet been officially diagnoised, but I am 99% sure. I am

currently waiting for a genetic consult to try and get some answers. In the mean

time, I just want to know if I am the only person who looks like me cos all the

photos show relly cute kids and any adults don't look like I do.

> > >

> > > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae

who diagnoised me with ovarian cysts, which resolved themselves. However, now my

periods are 3 months apart and i was just wondering if anyone else has had this?

> > >

> > > Any feedback would be soooooooo welcome, thanks

> > >

> >

>