new member

[Guest guest]

Hello again

I have a little more time to write, welcome to this group!

I forgot to add that Lily did have a ptosis repair, she had slings

put in because she could not open her eyes sufficiently. She has her

vision checked regularly and is being watched for devloping " lazy

eye " I worry about this the most, because she often has one eye open

and one eye closed. Her ptosis is very severe and she has to use her

brow muscles a lot, probably even more than I do.

That said, she is a wonderful little child, friendly and happy and a

wonderful temperament. Very healthy in every way. I have never

considered BPES a disability of any type. Strangely, I never worried

about how BPES would affect a child's development, because I have it

and my development was not (at least noticeably to me) affected. But

when my daughter was born and still at 6 weeks hadn't opened her

eyes, I was very frightened for her development. Really, children are

amazing and the human body is amazing.

Beth

> >

> > Hi,

> >

> > My name is Donna and I have a 15 month old boy, who has

> BPES.

> > is a beautiful, happy baby who we love very much and he

seems

> to

> > have a knack for making everyone who meets him fall in love with

> him.

> > He has a 4 year old sister and they adore each other.

> >

> > He is the first in the family with BPES, so until he was born we

> had

> > never heard of it. It is nice to read messages and hopefully

learn

> > from everyones experiences.

> >

> > has only recently started crawling and standing and we have

> been

> > told by the drs. that this is normal for someone with BPES as

> mobility

> > can be late to develop - did anyone else experience this?

Although

> > now he is coming on leaps and bounds.

> >

> > It has taken time for me to pluck up the courage to join the

group

> but

> > I guess that I need to know more about the surgery he will face

> when

> > he is older.

> >

> > We live in the UK and would be interested to hear from others in

> the UK

> > so we can share information on doctors etc.

> >

> > Best Wishes to you all

> >

>

[Guest guest]

Hi Donna My name is and my daughter is 2 and like is the first in our family with BPES. She walk at 15months but her speech is delayed(could be a blessing!!). We saw Mrs at Kings for her first operation at 9 months but now see a consultant in Maidstone Kent every 3 months. Where do you live? Glad you pluck up the courage to join,it really is a great comfort to know you are not the only ones out their. Take Care vann_donna <vann_donna@...> wrote: Hi,My name is Donna and I have a 15 month old boy, who has BPES. is a beautiful, happy baby who we love very much

and he seems to have a knack for making everyone who meets him fall in love with him. He has a 4 year old sister and they adore each other.He is the first in the family with BPES, so until he was born we had never heard of it. It is nice to read messages and hopefully learn from everyones experiences. has only recently started crawling and standing and we have been told by the drs. that this is normal for someone with BPES as mobility can be late to develop - did anyone else experience this? Although now he is coming on leaps and bounds.It has taken time for me to pluck up the courage to join the group but I guess that I need to know more about the surgery he will face when he is older. We live in the UK and would be interested to hear from others in the UKso we can share information on doctors etc.Best Wishes to you all

[Guest guest]

Hi Beth

Many thanks for your message. It is very interesting to hear your

comments regarding your little girl. The doctors have reassured us

that is developing normally and i think his late walking is

probably male laziness (and an over helpful sister!) rather than

anything else.

We have been told that probably won't need any surgery before

he is 4 years old and that his symptoms are fairly mild. He

certainly isn't using his brow as much as he did and at his last

sight check everything was within the normal ranges for a child of

his age. When he was born although we could tell within 12 hours or

so that something was not quite right he was trying very hard to

open his eyes.

It is very reassuring to read of your experience and fantastic to

hear you say you do not consider it to be a disability. We

certainly have never thought that and hope that as he grows other

people will share this view. He makes us laugh everyday and we love

watching him grow.

Your comments alone make me wish I had joined this group earlier

many thanks. Look forward to hearing from you again.

Donna (also 35!!)

> > >

> > > Hi,

> > >

> > > My name is Donna and I have a 15 month old boy, who has

> > BPES.

> > > is a beautiful, happy baby who we love very much and he

> seems

> > to

> > > have a knack for making everyone who meets him fall in love

with

> > him.

> > > He has a 4 year old sister and they adore each other.

> > >

> > > He is the first in the family with BPES, so until he was born

we

> > had

> > > never heard of it. It is nice to read messages and hopefully

> learn

> > > from everyones experiences.

> > >

> > > has only recently started crawling and standing and we

have

> > been

> > > told by the drs. that this is normal for someone with BPES as

> > mobility

> > > can be late to develop - did anyone else experience this?

> Although

> > > now he is coming on leaps and bounds.

> > >

> > > It has taken time for me to pluck up the courage to join the

> group

> > but

> > > I guess that I need to know more about the surgery he will

face

> > when

> > > he is older.

> > >

> > > We live in the UK and would be interested to hear from others

in

> > the UK

> > > so we can share information on doctors etc.

> > >

> > > Best Wishes to you all

> > >

> >

>

[Guest guest]

Hi

Thanks for your message - I'm really glad I have joined this group.

sees an opthamologist every 3 months for sight checks and the

consultant (Mr mouli) every 6 months. We have been told that

his BPES is fairly mild and he won't need surgery before he is at

least 3 or 4 yrs old.

We live in the Midlands and at the moment have the Wolverhampton Eye

Infirmary close by who have been fantastic, although there is a

strong possibility that it will be closing very soon. Which is why

I am interested in hearing of other specialist care.

Best Regards

Donna

> Hi,

>

> My name is Donna and I have a 15 month old boy, who has

BPES.

> is a beautiful, happy baby who we love very much and he

seems to

> have a knack for making everyone who meets him fall in love with

him.

> He has a 4 year old sister and they adore each other.

>

> He is the first in the family with BPES, so until he was born we

had

> never heard of it. It is nice to read messages and hopefully

learn

> from everyones experiences.

>

> has only recently started crawling and standing and we have

been

> told by the drs. that this is normal for someone with BPES as

mobility

> can be late to develop - did anyone else experience this?

Although

> now he is coming on leaps and bounds.

>

> It has taken time for me to pluck up the courage to join the group

but

> I guess that I need to know more about the surgery he will face

when

> he is older.

>

> We live in the UK and would be interested to hear from others in

the UK

> so we can share information on doctors etc.

>

> Best Wishes to you all

>

>

>

>

>

>

[Guest guest]

Donna

Thank you for writing back! Lily was also a very big baby, at 12

months she was 31 inches and 24 lbs. , now at 15 months she is 33

inches and 26 lbs., it does make it harder for them to balance and

walk. Lily made very quick progress between 13 -14 months and it

sounds to me that is doing the same right now, yes, clamp down

the Christmas tree! He sounds wonderful.

Sometimes I think I pay more attention to Lily's " difference " than

others do, it's hard to tell. Of course she looks different, but she

is just like any child, I suppose, much like I am similar to any

other 35 yr old woman... Now that she is walking, interacting with

other babies, I feel relieved. I am a teacher, Lily attends a home

daycare with two other little girls and it has made me so happy to

see them playing together, yesterday trying to comb each other's

hair. It was much harder for us when she was a baby and had suture

marks and swelling and an infection from the surgery, it was so

obvious to everyone that something was going on. People don't

understand how hard it is when it is your baby, not just some baby

you hear about.

My mother I feel was so wonderful for me, always made me feel

special,never appeared angry that this happened to me (although she

admits now she did feel angry at times)She protected me but didn't

isolate me.

Have a good day

Beth

> > > >

> > > > Hi,

> > > >

> > > > My name is Donna and I have a 15 month old boy, who has

> > > BPES.

> > > > is a beautiful, happy baby who we love very much and he

> > seems

> > > to

> > > > have a knack for making everyone who meets him fall in love

> with

> > > him.

> > > > He has a 4 year old sister and they adore each other.

> > > >

> > > > He is the first in the family with BPES, so until he was born

> we

> > > had

> > > > never heard of it. It is nice to read messages and hopefully

> > learn

> > > > from everyones experiences.

> > > >

> > > > has only recently started crawling and standing and we

> have

> > > been

> > > > told by the drs. that this is normal for someone with BPES as

> > > mobility

> > > > can be late to develop - did anyone else experience this?

> > Although

> > > > now he is coming on leaps and bounds.

> > > >

> > > > It has taken time for me to pluck up the courage to join the

> > group

> > > but

> > > > I guess that I need to know more about the surgery he will

> face

> > > when

> > > > he is older.

> > > >

> > > > We live in the UK and would be interested to hear from others

> in

> > > the UK

> > > > so we can share information on doctors etc.

> > > >

> > > > Best Wishes to you all

> > > >

> > >

> >

>

[Guest guest]

Hi Donna Welcome to the group! I am so pleased you had the courage to join, it will do you the world of good reading the messages and keeping in touch. It has helped me a lot. My name is Lucy and my husband Garry and I have a 9 month old daughter called Holly who has BPES, she is the first in the family to have the condition. We are in the process at the moment of seeing surgeons etc to see when Holly will be operated on. She is such a delightful little girl, always chatting, laughing and smiling and apart from other people thinking she is 'sleeping' she is developing fine. We live in Hampshire, UK, near Portsmouth. It would be great if you could attend the get-together in London on Sunday December 18th. It is really worth-while. Where do you live? Take care Lucy vann_donna <vann_donna@...> wrote: Hi,My name is Donna and I have a 15 month old boy, who has BPES. is a beautiful, happy baby who we love very much and he seems to have a knack for making everyone who meets him fall in love with him. He has a 4 year old sister and they adore each other.He is the first in the family with BPES, so until he was born we had never heard of it. It is nice to read messages and hopefully learn from everyones experiences. has only recently started crawling and standing and we have been told by the drs. that this is normal for someone with BPES as mobility can be late to develop - did anyone else experience this? Although now he is coming on leaps and bounds.It has taken time for me to pluck up the courage to join the group but I guess that I need to know more about the surgery he will face when he is

older. We live in the UK and would be interested to hear from others in the UKso we can share information on doctors etc.Best Wishes to you all

To help you stay safe and secure online, we've developed the all new Security Centre.

[Guest guest]

Hi Lucy

Thank you for your message. Sorry for the delay in responding but

it's been a hectic weekend. We laughed when we read you comment

about everyone thinking Holly is 'sleeping'. People regularly say

this to and we have learned to laugh now.

I'm not sure that we will be able to make the meeting on the 18th

Dec but would love to meet up with others - is this a regular

meeting? If so we would certainly try to be there next time.

Regards

Donna

> Hi,

>

> My name is Donna and I have a 15 month old boy, who has

BPES.

> is a beautiful, happy baby who we love very much and he

seems to

> have a knack for making everyone who meets him fall in love with

him.

> He has a 4 year old sister and they adore each other.

>

> He is the first in the family with BPES, so until he was born we

had

> never heard of it. It is nice to read messages and hopefully

learn

> from everyones experiences.

>

> has only recently started crawling and standing and we have

been

> told by the drs. that this is normal for someone with BPES as

mobility

> can be late to develop - did anyone else experience this?

Although

> now he is coming on leaps and bounds.

>

> It has taken time for me to pluck up the courage to join the group

but

> I guess that I need to know more about the surgery he will face

when

> he is older.

>

> We live in the UK and would be interested to hear from others in

the UK

> so we can share information on doctors etc.

>

> Best Wishes to you all

>

>

>

>

>

>

[Guest guest]

Rhonda,

I have questions about these two web sites but no time to investigate

until next week. Mold doesn't have to be identified before it is

removed, per EPA etc. All mold is removed the same way. Mold doesn't

have to be killed, but removed instead. The barrier system MAY be

excellent and I almost always recommend something similar - but there

are other factors to consider.

In the meantime, why don't you also check out the referrals at Indoor

Air Quality Assoc www.iaqa.org and International Inspection, Cleaning

and Restoration Certification www.iicrc.org. For the ducts go to

National Air Duct Cleaners Assoc at www.nadca.com.

Just because they are members and/or certified by a nationally

recognized org doesn't guarantee they are all ethical, but you will

have a better chance getting an honest assessment and effective

remediation without incuring extra charges and unnecessary work.

Also, ask that they follow the EPA guidance in Mold Remediation for

Schools and Commercial Buildings, ACGIH Bioaerosols and IICRC S520.

If they don't know what those are or if they disparage them, keep

looking.

Carl Grimes

Healthy Habitats LLC

-----

> I have mold in crawl space and in my air system and no telling where

> else. I have a damp crawl space and been in house 12 years with me

> getting sicker every year. Migraines, sinus, and dxed with a brain

> lesion last year. I'm looking into mold remediation and mold testing.

> Anyone that has used companies I'd like your advice and if the mold

> din't keep coming back. I'm in Wendell, NC outside the capital,

> Raleigh.

>

> I have talked to Envirocure from GA. www.aenvirocure.com in GA. Look

> at this site and tell me what you think. They use a bio-degradable

> enzyme to kill the mold and put in a barrier in crawl space that

> covers the sides, top and dirt and said I need a de-humidifier. They

> also hook up a HEPA filteration system to my air system. But just by

> phone consultation estimated near $5000 but they will have to see to

> give the real estimate. The man said if I put the sheild in then it

> wouldn't matter how much water ran thru underneath it as far as mold

> goes but still my foundation could crack one day. I can't afford

> french drains at the same time and feel most important to rid the

> molds and whatever other nasties might be brewing in my air system. I

> was told by an AC man I have mold in the plenum and can smell the

> sour, gross stuff when air is on. I have visable mold in crawlspace

> on woods and insulation. I see green, white, black and not sure what

> else.

>

> I really think there is a link to the molds and my lesion and

> migraines and sinus and gets worse every year. I now take low dose

> naltrexone which you can read about on www.low dose naltrexone.org and

> last MRI my lesion was stable and some of the symptoms from lesion

> went away also but if molds are doing all this, only so much is going

> to help until molds are gone.

>

> I have found www.moldidservices.com in Raleigh. Check this site out

> and let me know what you think. I looks good to me and I was told by

> a enviromental specialist on phone to get an industrial hygenist to

> identify what I have. I'm trying to get all the info I need so this

> job is done correct and I do not get ripped off. I don't want to get

> any sicker and hope to get a lot better after cleanup. I worry what

> it's doing to my bunnies and cats also and if spores are contaminating

> the hays and foods my pets get b/c bunnies can die from mycotoxins as

> well as other animals.

>

> Rhonda and her furbabies in NC

>

>

>

>

>

>

>

>

>

[Guest guest]

I want to know if any of the molds are the toxic ones b/c I think the

mold is linked to my brain lesion. I probably used the word killed

but meant removed. I just want to kill the crap myself b/c ruining

my life. I'll check out the sites you listed. Yes, I know there

are plenty of fraud out there esp. to women that is why I'm searching

around and asking questions and getting a mold id place to tell me

what I have and not just let the mold remediation company come and

remove. I want the types of molds also just in case I can sue the

builder for covering up the wet crawl space. I had an attorney first

6 months in the house and should have pressed harder for correct

french drains ETC. I was so stressed out and my first house.

The Envirocure removes/scrubs the whole crawlspace with the

biodegradable enzyme and will remove whatever is in my plenum. The

other company said hard to remove molds/etc from plenums b/c of a

fiberous insulation in the plenum. Anyone know about that? My HVAC

is over 12yrs old so I will need a new one soon but I don't want to

buy one before this one goes b/c expensive and I spend $800 for a

coil a year ago and seems I got price gauged but two days at 100

degrees, I couldn't take it and domestic bunnies can go into heat

stroke over 78 degrees and I almost lost one.

I also wonder about the ducts and I have the black flex type and

wonder if mold is in them. Expensive to replace I'm told. If

anything is in the ducts, will the whole house HEPA system take care

of that?

Rhonda

--- In , " Carl E. Grimes " <grimes@h...>

wrote:

>

> Rhonda,

>

> I have questions about these two web sites but no time to

investigate

> until next week.

[Guest guest]

Hi Rhonda,

Sorry to hear about all your mold issues, but there

are plenty of people on these boards who can guide you

in the right directions. I was in the same situation

a few years ago, and it is so overwhelming knowing

where to turn for advice...it is very confusing to say

the least. I had about 3 estimates on mold

remediation and removal ranging from 1800 to 10,000

plus in my condo in RI. I finally just had the place

gutted and rebuilt by general contractors, and it was

not done in any professional way to protect them or me

from further mold contamination and damage. I could

only afford so much and didn't really know what I was

doing at the time. Everyone seems to tell you

something different. I did hear of a similar case to

yours of mold in a crawl space, and the owner once

contacted me and told me about it. He has a suit

pending against basically everyone, the real estate

company that sold the unit, the condo association, and

possibly the builder. Sometimes it is a problem to

even find the builder. But, you probably should be

talking to an attorney to help you through this, but

it is a long and very difficult road which often takes

3 years or more. Some people do seem to get early

settlements though. An air test by an industrial

hygienist is probably good for you to get for

documention. But, I wouldn't be too concerned about

the types of mold, because it is all very nasty stuff.

You are correct in being worried about your health,

and I would also suspect that the brain lesions, the

headaches, etc are definitely caused from the mold.

If this has spread to your HVAC, you can just consider

that mold spores are everywhere in your house. You

just can't see them as they are invisible to the naked

eye. I should have left my place, but couldn't afford

it, so after my house was gutted, I purchased

dehumidifiers and air purifiers (you have to get good

ones) The air was measured and my efforts did pay off

in reducing the mold spores in the air, therefore it

helped protect my health until I could get out of

there, which I eventually did. HEPA filters are very

good, but first you need to get rid of all the mold,

which isn't easy.

Again, so sorry you are going through this terrible

time. Judi

--- Rhonda <rhondaleokitty@...> wrote:

> I want to know if any of the molds are the toxic

> ones b/c I think the

> mold is linked to my brain lesion. I probably used

> the word killed

> but meant removed. I just want to kill the crap

> myself b/c ruining

> my life. I'll check out the sites you listed.

> Yes, I know there

> are plenty of fraud out there esp. to women that is

> why I'm searching

> around and asking questions and getting a mold id

> place to tell me

> what I have and not just let the mold remediation

> company come and

> remove. I want the types of molds also just in case

> I can sue the

> builder for covering up the wet crawl space. I had

> an attorney first

> 6 months in the house and should have pressed harder

> for correct

> french drains ETC. I was so stressed out and my

> first house.

>

> The Envirocure removes/scrubs the whole crawlspace

> with the

> biodegradable enzyme and will remove whatever is in

> my plenum. The

> other company said hard to remove molds/etc from

> plenums b/c of a

> fiberous insulation in the plenum. Anyone know

> about that? My HVAC

> is over 12yrs old so I will need a new one soon but

> I don't want to

> buy one before this one goes b/c expensive and I

> spend $800 for a

> coil a year ago and seems I got price gauged but two

> days at 100

> degrees, I couldn't take it and domestic bunnies can

> go into heat

> stroke over 78 degrees and I almost lost one.

> I also wonder about the ducts and I have the black

> flex type and

> wonder if mold is in them. Expensive to replace I'm

> told. If

> anything is in the ducts, will the whole house HEPA

> system take care

> of that?

>

> Rhonda

>

> >

> > Rhonda,

> >

> > I have questions about these two web sites but no

> time to

> investigate

> > until next week.

>

>

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Thanks for replying Judi. Please everyone tell me what you did right

and what you found out later you did wrong with finding mold

redemiation people.

Yes, they remove the mold and clean the air system before hooking up

HEPA system but I can't recall what the Envirocure man said about the

air ducts. I know mold spores are all over my house so how do they

get rid of them? There is probably mold growing places inside I

have't seen. I found furballs of mold floating in my toilet tank last

summer and thought that was weird. I have a chlorine whole house

water filter and must be why the spores could grow mold there. I put

a chlorine tablet in the tank. I looked recently and those things

you drop in tanks look like they just stay there kinda dissolved.

Didn't see furballs tho.

I also have felt dampness under the kitchen sink but really never see

a leak so must be a small leak. Even my lino has brown spots all

over and happened the first year there and not sure if that is from

moisture or just bad subflooring. Seems someone mentioned once to me

it was sap staining thru the lino. I had a wood coffin for my dying

kitty under house for a couple months and went to get it out and it

was covered in fur and stinked.

The moldid guy just called and said it is $495 to do what they do but

from talking to him I think I am going for this first b/c he said

they can tell me all the ways of taking care of the problem and may

be cheaper ways. Also, I want to sue due to health reasons his

documentations will be professional to hold up in court. I ask if he

knew attorney's that deal with mold sueing and he said yes and he

said he has been doing this for a long time.

I really think my stupid water conservation toilet overflowed twice

last summer to make me aware I had a huge mold problem. The water

ran down air vent into duct and I think some even went into the

plenum, yuck. Never overflowed before and never since. How ironic

is that. I had finally gotten somewhat better for the research of the

low dose naltrexone so guess it was time for finding the source of

the lesion, sinus and headaches and feeling like I'm am dying.

I'll let you know how goes and guy said next week he would have

openings. This will be interesting and scary at the same time. I

know my house has made me sick and where I work isn't a great place

either so I'm just being poisioned all around. Got 6 more years at

nasty workplace too.

Rhonda

> > >

> > > Rhonda,

> > >

> > > I have questions about these two web sites but no

> > time to

> > investigate

> > > until next week.

> >

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________________

> DSL – Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

[Guest guest]

dottykalm <dottykalm@...> wrote: Hi Rhonda,

Sorry to hear about all your mold issues, but there

are plenty of people on these boards who can guide you

in the right directions.

I am not close to being an expert but I am going through the mold issue as we

speak. I have learned a lot from people here and especially erik. I want to also

say that I got a book yesterday and I think it makes very cases for how to

remove different things such as particles and molecules. The man who wrote the

book is actually a regular poster here, Carl Grimes. I was thinking of trying to

save this place but after following up with what posted recently about mold

spores coming for certain area's and causing problems, I have noticed a house

across the street in which the owner tried to paint over the mold, w/o removing

it, with white paint! When she first did it several years ago, I saw part of the

mold starting to come through and I saw awhile ago and almost the whole front

shows mold coming through the paint. I now realize that mold spores can come

through the open window from that house into my house. I see little parts of

mold starting to grow on my front porch yet it is

covered with a metal roof. I can only figure that the mold growing across the

street and even next door is causing that growth outside. I don't see any reason

to save this mobile home, unless I bought some land and moved it out there and

that is too much risk and is not worth it.

I can see now that I know that mold spores can come from places next to you

that in a situation like that it doesn't make much sense in trying to save it. I

use to not be afraid of buying a condo or townhome but I would now. too many

other people in the equation which affects me.

Good luck, Bob

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

for Good - Make a difference this year.

[Guest guest]

Rhonda,

Good. You have clearly defined what you want. You want evidence

linking exposure to health effects. That is a valid reason for

testing...

Now, despite the risk of the accusation of being negative and not

supporting you and others, here are some of the issues that need to

be addressed and answered in a manner that the legal skeptics will

accept.

What molds are toxic? Stachybotrys chartarum is generally accepted as

a " toxic mold. " It is acutally " toxigenic, " meaning it CAN be toxic

but isn't always. One of three varieties produces T2. Which is

present? No reasonable test outside of a research lab will identify

the variety. Mycotoxin tests are expensive and not very reliable -

too many negative results that are false. So be careful with testing

or you will disprove your own claim.

Penicillium? It is very common and usually discounted for that

reason. But the mycotoxins from some species are more potent than

those from Stachybotrys. What determines toxicity? The environment

the mold is in. That is more descriptive and more predictive than an

lab testing.

The grounds for sueing the landlord for not disclosing a wet

crawlspace will be based more on his duty to disclose rather than

what was in the crawlspace.

I'm not trying to be a skeptic, far from it. But if we make a claim

we need the best expertise to substantiate it. That isn't always lab

data. It is usually whatever fits the " belief " system of the

procedure, be it legal or medical or social.

Right now the prevailing medical and scientific evidence - not

necessarily correct - is that mold doesn't cause brain lesions. So

you will have a tough time supporting your claim. But you might have

an easier time with a claim that pesticides - including those for

mold - can cause brain lesions and other diseases. There is much more

evidence for that. So be very careful with what you authorize anyone

to use.

Get independent verification about any claims. Which is what you are

doing, basically, by posting on this forum. If only more of us would

do that!

BTW, if they tell you something kills or eradicates mold it must be

registered with EPA and have a registration number. They will most

likely tell you it is safe but that is a violation of federal law to

make that claim.

There is some evidence that the process of killing mold increases

spore levels and even mycotoxin levels, because the mold is trying to

protect itself.

Moldy insulation in ducting should be removed rather than killed-and-

encapsulated. This is per NADCA standard ACR 2005 which is based on

IICRC S520 and general advice from EPA. Flex duct is cheap, much

cheaper than trying to clean it, ripping holes in the process and

then replacing it.

Whole house HEPA filters don't filter all the air that goes through

the system. It only filters a portion of it. Therefore, it is not an

alternative to clean ducts. Remove the dirt and mold from the ducts

and there isn't much left to filter.

Again, get INDEPENDANT verification of the claims these companies are

making. Which you are doing by asking these questions. Which you can

also get by reaching someone from the web sites in my previous post.

You need accurate characterization of your exposure, accurate medical

diagnosis of your condition and then an authoritative opinion that

says your exposure can cause your conditiion and it actually did in

your case. And that the landlord was required to disclose. All in a

way that is acceptable to the courts.

This is not easy but many, many of us have lost tons of money, time

and " brain damage " trying to prevail with a case seen as weak by the

courts. I had a client very ill from a meth lab in the apt she

rented. The law, at that time, did not require the landlord to

dislose. She lost her case.

I'm sorry for what you are going through but realistic expectations

that limit harm is better than false hope that leads to more harm.

Isn't that a sorry commentary about our dilemmas?

Carl Grimes

Healthy Habitats LLC

-----

> I want to know if any of the molds are the toxic ones b/c I think the

> mold is linked to my brain lesion. I probably used the word killed

> but meant removed. I just want to kill the crap myself b/c ruining my

> life. I'll check out the sites you listed. Yes, I know there are

> plenty of fraud out there esp. to women that is why I'm searching

> around and asking questions and getting a mold id place to tell me

> what I have and not just let the mold remediation company come and

> remove. I want the types of molds also just in case I can sue the

> builder for covering up the wet crawl space. I had an attorney first

> 6 months in the house and should have pressed harder for correct

> french drains ETC. I was so stressed out and my first house.

>

> The Envirocure removes/scrubs the whole crawlspace with the

> biodegradable enzyme and will remove whatever is in my plenum. The

> other company said hard to remove molds/etc from plenums b/c of a

> fiberous insulation in the plenum. Anyone know about that? My HVAC

> is over 12yrs old so I will need a new one soon but I don't want to

> buy one before this one goes b/c expensive and I spend $800 for a coil

> a year ago and seems I got price gauged but two days at 100 degrees, I

> couldn't take it and domestic bunnies can go into heat stroke over 78

> degrees and I almost lost one. I also wonder about the ducts and I

> have the black flex type and wonder if mold is in them. Expensive to

> replace I'm told. If anything is in the ducts, will the whole house

> HEPA system take care of that?

>

> Rhonda

> > > Rhonda, > > I have questions about these two web sites but

> no time to investigate > until next week.

>

>

>

>

>

>

>

>

[Guest guest]

Rhonda,

You are a decisive person and I applaude you for making decisions

based on information that you understand and trust. Right or wrong -

and you won't know until you do it - is there anything better? If we

rely solely on the " experts " to tell us what to do we still have to

gather information about them and then make a choice about which

expert we understand and trust.

Let us know what happens.

Carl Grimes

Healthy Habitats LLC

-----

> Thanks for replying Judi. Please everyone tell me what you did right

> and what you found out later you did wrong with finding mold

> redemiation people.

>

> Yes, they remove the mold and clean the air system before hooking up

> HEPA system but I can't recall what the Envirocure man said about the

> air ducts. I know mold spores are all over my house so how do they

> get rid of them? There is probably mold growing places inside I

> have't seen. I found furballs of mold floating in my toilet tank last

> summer and thought that was weird. I have a chlorine whole house

> water filter and must be why the spores could grow mold there. I put

> a chlorine tablet in the tank. I looked recently and those things you

> drop in tanks look like they just stay there kinda dissolved. Didn't

> see furballs tho.

>

> I also have felt dampness under the kitchen sink but really never see

> a leak so must be a small leak. Even my lino has brown spots all over

> and happened the first year there and not sure if that is from

> moisture or just bad subflooring. Seems someone mentioned once to me

> it was sap staining thru the lino. I had a wood coffin for my dying

> kitty under house for a couple months and went to get it out and it

> was covered in fur and stinked.

>

> The moldid guy just called and said it is $495 to do what they do but

> from talking to him I think I am going for this first b/c he said they

> can tell me all the ways of taking care of the problem and may be

> cheaper ways. Also, I want to sue due to health reasons his

> documentations will be professional to hold up in court. I ask if he

> knew attorney's that deal with mold sueing and he said yes and he said

> he has been doing this for a long time.

>

> I really think my stupid water conservation toilet overflowed twice

> last summer to make me aware I had a huge mold problem. The water ran

> down air vent into duct and I think some even went into the plenum,

> yuck. Never overflowed before and never since. How ironic is that. I

> had finally gotten somewhat better for the research of the low dose

> naltrexone so guess it was time for finding the source of the lesion,

> sinus and headaches and feeling like I'm am dying.

>

> I'll let you know how goes and guy said next week he would have

> openings. This will be interesting and scary at the same time. I

> know my house has made me sick and where I work isn't a great place

> either so I'm just being poisioned all around. Got 6 more years at

> nasty workplace too.

>

> Rhonda

>

>

> > > > > > > Rhonda, > > > > >

> > I have questions about these two web sites but no > > time to > >

> investigate > > > until next week. > > > > > > > > > > > > > > > >

> > __________________________________________ > DSL – Something

> to write home about. > Just $16.99/mo. or less. > dsl. >

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

So are you saying that it is a waste for me to test then? I'm not

even sure how I'm going to take care of any of this b/c I haven't

been feeling so great lately. So I guess I do not need to get an

attorney and waste my time or money. I wish I knew who to get to

clean it up. I can't handle calling all these places and they all

are going to say they are great. And how will I know if what they

are using to remove the mold is TOXIC and harm me more and kill my

bunnies and cats? I would die myself if my animals died b/c of

cleaning that nasty stuff. I couldn't live thru that and I do not

have support from anybody except people here. They are making me

sicker acting like I'm crazy for even trying to clean the mold. If

they had brain damage I bet they would rid of things that might be

contributing to it. It only adds up that I lived there 12 years and

by year 2 I had symptoms that progressed to where I am now. Have

sour, pukey, nasty smells coming from my air system and been told by

an AC man I have MOLD in my plenum and I see visable molds in crawl

space etc. I just feel hopeless and tired.

Rhonda

> > Rhonda, > > I have questions about these two web sites

but

> > no time to investigate > until next week.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

You look like you are doing the right thing, which is to educate yourself before

trusting in

what the contractors are telling you. I think most of them are well meaning, but

it is a

difficult and complex situation to remediate. Precisely because we are ill from

the mold,

and that makes it harder to understand what is the most effective and safe thing

to do.

Many of us have various neurological effects from mold exposure, so I would

not be

surprised about a lesion from it.

The first thing is to get the water under control. That is what so many experts

say. If there

is still water seepage, then the problem will recur.

If you have mold in porous insulation, how is it possible to kill it all,

anyway? There would

always be some left, so removal is the best option. Killing mold, from my

personal

experience, makes one problem into 10, as when it is threatened, it puts out

more toxins

than before and in greater quantity. Just removing it stirs up so much it can

make you

much sicker than before.

Consider fungal biology. At a Shitake farm, they had 2 foot oaks logs stacked at

an angle.

They drilled a 1/2 inch hole, and stuffed some spores in it, and sealed it with

wax or

something. After a year, there was a sufficient fungal growth inside the log to

support a

tiny mushroom, the fruiting body. The second year, there were several mushrooms

coming

out of each little log. The mycelial stage has to grow to a certain mass before

it can

support a fruiting body, and it was all through the inside of the log.

So, that may be what is happening in your crawl space. What you can't see is

many times

greater than what you can see.

I have a different situation with the mold in my home, but similar health

issues. I chose to

remove all mold, then to apply biocides to try to get the risidues. then

seal/paint the

surfaces to make me feel better. I had it in the bathrooms, and basement. I had

my steel

ducts scrubbed out and put in a new furnace. The air quality is an issue we are

still

working on. I have 2 small hepa filters that plug in from room to room. Since

our problem

was not anyone's fault, we were not interested in legal avenues. It was too many

years,

also the work that people did 30 years ago to fix up the home was a big part of

the

problem. Who would have known that back then?

Good luck with your new journey,

> >

> > Rhonda,

> >

> > I have questions about these two web sites but no time to

> investigate

> > until next week.

>

[Guest guest]

WELCOME to the group . Love to meet you on chat and introduce

you to zavie. Not sure exactly when they have chat. Its all in

american time table..hope to speak to you soon..

Susie Leech

Dx Nov 2002

Currently not on Gleevec

[Guest guest]

Hello and welcome to the CML group

I just thought I would throw my hat in the ring on

Doctors and a few things..I do not post much but

read a lot.

It is sad that some of us live in places where the

doctors who have tons of experience in CML live.

So we have no choice but to go with what we have

and by putting trust in him/her , that is not to say

he/she is the best but is the best in the area we live

in.

In some cases our attitude and trust in our doctors

is

all we have or, in other cases, trust in what ever God

you believe in. In my case I mentioned to my doc

some of the suggestions that were bandied about here.

My doctor said that some of these new drugs are not

available here yet but up in Ont they are, he said

he would send me. I said no, I am content to stay

where I feel safe and secure. I have lived many years

with this CML and I have had it easy compared to

some of you. At this time I am off Gleevec until my

counts come up. I just had a platelet transfusion 4

units.

I go for blood test twice week and a standing order

for

whole blood if needed. I just had another BMB and

waiting for results. I never had a Hematologist until

last Christmas(2004) , nor did I want one then, but my

GP

insisted. So even if you do not believe in the Bible

I

suggest you go online Bible read a chapter that

is only in the Deuterocanonicals or Apocrypha, Chapter

38, read the whole thing the Chapter is Called

Sickness and Medicine.

Sorry for the long post, but I just hoped to quell the

anger

or hard feelings that have come up lately.

Be Safe all

SkipD

DX 28 years ago...still kicking.

It is only with the heart one see rightly,

what is essential is invisible to the eye, said the

fox

--- michelle_thompson68

<michelle_thompson68@...> wrote:

> Hello to all CMLers

>

> I am new to the group, I have not long be diagnosed

> and I am looking

> for a support/Chat group where I can feel safe and

> share my feelings

> and emotions that are going crazy in me at the

> moment

>

> I am reading through all the post to get a feel for

> you all

> individually - I look forward to hear from you, can

> someone please let

> me know when the next chat is happening..thankyou

>

>

> dx Jan 2006

>

> Currently on Hydroxyurea

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

Welcome to the group. I'm sure you'll hear from Zavie, he's our

chat host but incase he hasn't seen your post yet, the chats are on

Tuesday nights at 9pm Central (6pm Pacific) and Saturday mornings at

9am Central. There are also impromptu chats every once in a while.

You'll have to add Zavie to your " friends " list on your

messenger to join the chat, as that's how we chat (via the

messenger).

I remember those first days post diagnosis and I can promise you

that it will get better. If you're the type that wants to learn as

much as you can about the disease, you should check out our files

secition where there's an FAQ and Glossary. (click on " files " at the

left of the screen).

Feel free to ask any questions, I'm sure someone will know the

answer and if not, they can show you where to find it.

Take care,

Tracey

dx Jan 2002

>

> Hello to all CMLers

>

> I am new to the group, I have not long be diagnosed and I am

looking

> for a support/Chat group where I can feel safe and share my

feelings

> and emotions that are going crazy in me at the moment

>

> I am reading through all the post to get a feel for you all

> individually - I look forward to hear from you, can someone please

let

> me know when the next chat is happening..thankyou

>

>

> dx Jan 2006

>

> Currently on Hydroxyurea

>

[Guest guest]

Hi ,

I great big welcome to the group.

I've had CML for just over two years now. Believe me, it does get

better with time. It takes time to wrap your brain around a

diagnosis, but with each passing day, and more information you learn

about CML, you become more knowledgeable and more confident with

yourself and your future.

You will meet a great bunch of people here on this site. We are all

here with the best of intention of learning and sharing with others.

It is quite a spirited and lively group too. I think we all have one

thing in common other than having CML ourselves or being a caregiver

or friend. We are passionate!

For myself, I am 43, married to a very loving and supportive spouse,

and have two young daughters, age 6 and 9. I am from Washington

State. Where are you from?

Feel free to ask anything and everything. There is no dumb

question. We have all been where you are at, and we are a great

source of friendship and knowledge.

Sincerely, Lynn (Snickersunny)

>

> Hello to all CMLers

>

> I am new to the group, I have not long be diagnosed and I am

looking

> for a support/Chat group where I can feel safe and share my

feelings

> and emotions that are going crazy in me at the moment

>

> I am reading through all the post to get a feel for you all

> individually - I look forward to hear from you, can someone please

let

> me know when the next chat is happening..thankyou

>

>

> dx Jan 2006

>

> Currently on Hydroxyurea

>

[Guest guest]

I am at work and can;t type a bunch now ...but my suggestion and this is the way we always do it ...schedule school age kids surgeries for the 1st week they are off for summer break. My kids have surgeries the first Friday of summer break ..they have all summer to heal and the other kids don;t notice any changes. It is much easier for the children to deal with it that way. Lots of luck Sharon Sharon Mom for (3) kids with BLEPH Ages 14,11 and 1

Get your email and more, right on the new .com

[Guest guest]

Oh thank you so much for replying to my message!! That is a great idea and if it is soon enough than they have the rest of the summer to play and heal!! I will take your advice!! How did all of your kids do in school? Marcus has such a great personality that I know that he will end up doing great, but as a mother I just worry as you can imagine!! Thanks again, maybe we can speak later when you are not at work!! Karla Mesman Hudsonville MI Sharon A <besilly12000@...> wrote: I am at work and can;t type a bunch now ...but my suggestion and this is the way we always do it ...schedule school age kids surgeries for the 1st week they are off for summer break. My kids have surgeries the first Friday of summer break ..they have all summer to heal and the other kids don;t notice any changes. It is much easier for the children to deal with it that way. Lots of luck Sharon Sharon Mom for (3) kids with BLEPH Ages 14,11 and 1 Get your email and more, right on the new .com

[Guest guest]

Hi June,

Welcome to the group! Your son is the same age as me:) My birthday is also August 9th, like your new grandson.....My husband and I have a 3 1/2 year old son Ethan with bleph, (wearing pumpkin suit at site) he is the very first in either family to have this so a little surprised:) Do you have pics of your son? We would love to see them, seen as you just found out what the condition is actually called I don't spose he has had surgery at all??? Here is my e-mail if you would like to e-mail me some pics of him:) You will find lots of answers here, there are a lot of *experts* not Dr's, but people that have gone through surgeries with there own children or themselves....its an informative group and always there to listen....again, welcome, and look forward to hearing from you soon....

tltne@...

Leanne and family NZ

-- blepharophimosis new member

Hi Everyone, My name is June and you might not belive this but I have ason Marc who is 33yrs old and I have only just found out the name of hiscondition.We were just told it was one of those things,and left to geton with it(no net to look on then) and I have never met anyone else withthe condition it would have been so good to have been able to talk tosomeone who understood! but now I have Just been blessed with a newgrandson Alfie (9th August)who also has bleph so I was able to find you,and I have got to say it as helped so much to find what can be done nowand to read all the messages and to see the lovely Pictures thanks toall.June x

[Guest guest]

Hi Simon and ,

I just joined this group and have a 10 year old son with a

mild case of BPES.

We still haven't done any corrective operations. He is the first

one in our family to have this condition.

We live in San , CA and go to a pediatric ophthalmologist at

Stanford University Hospital. We have been told that he is

compensating well, and that there is no need to have the surgery,

now.

One interesting thing is that he needs glasses for a mild correction

in his vision, but even more important, the glasses seem to make

people not focus on the size of his eyes. My son is used to people

looking at him & commenting on his eyes, but most people think he is

half Asian. Just for fun, my son announced that he would like to

start learning Chinese, too!

Anyhow, my 10 year old is doing great. There may be a time in the

future that his doctor recommends the surgery or he starts asking

about it. We will be ready when the time comes.

Carol

p.s. It will be interesting to hear what your genetisist says about

why it developed. We were told that it was a random mutation and

now he has a 50% chance of passing BPES on to his children.

>

> Hi,

>

> We have a daughter by the name of Antonia and she is 6m old with

> BPES.

> We are in Sydney and our doctor only sees one or two patients

every

> year with the syndrome and prior to last week we really didnt know

> much about this syndrome so I was delighted that my husband found

> this site, with so much invaluable information.

>

> Antonia apparently has a mild case as she is able to open her eyes

> enough to develop mentally - though still everyone asks me is her

> father asian - so they dont want to do the first surgery until she

> is 3 or 4, which will correct the telecanthus and then wait a year

> and do the surgery to fix the ptosis. I am not sure what sling

> surgery is though I assume it is the same thing just different

> terminology.

>

> Through the Childrens Hospital in Sydney, we are getting dna

tested

> through a lab in Belgium to find out why this gene mutated, the

> likelyhood of it happening again and if Antonia is type 1 or II.

>

> Anyway, just wanted to introduce ourselves.

> Simon, and Antonia.

>

[Guest guest]

June

I was 33 yrs. old when my daughter was born and I knew that my

condition was dominant and could be passed on, since my grandfather

and father both have it, but no one had ever told

me " blepharophimosis " until my daughter was born, even then doctors

were hesitant to call it that, but as soon as I found this site I

understood. I felt very silly to not know the name of this

condition. NOw of course at her age it is obvious that she has BPES,

in a newborn it is harder to tell. She didn't open her eyes at all,

she couldn't.

My daughter is now 26 months and has had slings, and will have

canthioplasty in 07. She is a healthy and active toddler. We live in

Virginia, USA.

Congratulations on your grandson.

--- In blepharophimosis , " fall3005 " <fall3005@...>

wrote:

>

>

> Hi Everyone, My name is June and you might not belive this but I

have a

> son Marc who is 33yrs old and I have only just found out the name

of his

> condition.We were just told it was one of those things,and left to

get

> on with it(no net to look on then) and I have never met anyone

else with

> the condition it would have been so good to have been able to talk

to

> someone who understood! but now I have Just been blessed with a new

> grandson Alfie (9th August)who also has bleph so I was able to

find you,

> and I have got to say it as helped so much to find what can be

done now

> and to read all the messages and to see the lovely Pictures thanks

to

> all.

>

> June x

>