A Mom's plea for her daughter, requested to post widely.

[Guest guest]

MOM'S PLEA - MCS IS KILLING MY DAUGHTER!!

PLEASE HELP!!

 

Permission to post widely - this is a life and

death situation - please send to whomever you can to

secure help for this most severe MCS sufferer -

please send to as many media as possible to take up

this story - Kim's mother Heidi desperately needs

help to save her daughter's life - I fear what will

happen if she doesn't get help - please send to

whoever you can to secure help. Since receiving the

story below, the situation has worsened - please help.

Thank you, Diana Buckland www.mcs-global.org

 

Heidi Evans

09/16/05 02:22:20

submissions

MCS is killing my daughter!

 

You have my permission and Kim's to do anything at all

that may help.

Emails heidi, heidi

Bethel, CT 06801

203-744-7355

 

 

My daughter, 24, is dying before my eyes and no one is

able to help us. I had never heard of MCS until a few

weeks ago, when my sister in Florida emailed me to say

she had read something about MCS, that it sounded like

Kim, my daughter, and I should check it out.

 

My daughters problems started over a dozen years ago,

and have steadily evolved. Her first " episode " is of

unknown origin. My husband and I came home after an

evening out, and checked on Kim in bed. She looked

like she had been beaten up. Her face was swollen and

bruised and almost unrecognizable. We still have no

idea what caused this. Seemed to be allergies. Over

the next few years she would have repeated swellings

in her face for seemingly no reason. The swelling

would be so extreme that small blood vessels burst,

resulting in bruising. She began to see an allergist

for testing and subsequently shots. Mold, dust, etc,

etc. High school was especially rough. One day the

swelling started in school, and a counselor thought we

were abusing Kim. Despite Kim's protests that she was

fine before she got to school, the counselor called

the authorities. They wouldn't believe that we had

not harmed Kim, and sent someone over to visit us at

home. The man was skeptical, despite our explanations

and Kim's. I finally ran my finger over the top of

the hutch, rubbed the dust under Kim's nose, and told

him to watch. He said he'd never seen anything like

that in his life - in front of his eyes Kim's face

began to swell and bruise. Her chin was always the

most affected, and her lips. The rest of high school

passed similarly; there was remodeling being done and

the smell of the paint bothered her. This was also

during the time that the local dump fumes were being

carried into the building and the town was in an

uproar. The dump was later capped and closed, but not

before we had to remove Kim from school on a permanent

basis and home school her for her senior year.

 

Over the next few years, after completing her allergy

shots, the swelling and bruising ceased. Kim

developed asthma instead. We could not figure out

why, nor was there any rhyme or reason to her attacks.

 

Exercise doesn't affect her as one would expect, and

she can just be sitting somewhere and suddenly have an

attack. Doctors have tried to blame it on our pets,

but we point out that she's best at home. The animals

are not affecting her. During one period of

disability from work she spent a couple of months at

home, exclusively, surrounded by animals. She was

fine until the day she left the house to go to the

doctors for an appointment.

 

The past three years have been a nightmare, and

getting progressively worse. I'm afraid she is going

to die because no one understands or can help her.

 

She works for a supermarket chain, mid-management.

She went months with no problems, then was moved to

another store. Episode after episode followed -

mostly just asthma attacks. It was decided that the

ventilation system in the store might be harboring

something that bothered her, so they cleaned it. She

was fine after that. Kim was transferred to another

store, and had more problems. The asthma attacks

became worse, and Kim was taken out of the store a

couple of dozen times via ambulance. As her mother,

this became very scary. Kim started to notice that

the attacks were brought on by smells. Perfumes are

the worst. Paint and just about anything else can

trigger this as well.

 

Kim has been on so many medications for so long I

don't see how her system can take much more. This

past December, during another hospitalization, she was

on massive doses of IV steroids. After two weeks she

was

unable to walk. The doctors wanted to put her into a

nursing home for rehab. I refused, and drove her to

the Mayo Clinic in Florida, hoping to get her accepted

as a patient. She was, but has yet to return. I knew

it was the steroids that caused the muscle weakness; I

was right. Getting her off the steroids saved her

mobility.

 

She has had many close calls. She'll leave work ok,

and start to feel " funny " on the way home. She's been

stopped numerous times by law enforcement for erratic

driving and ended up in the hospital. Her one goal

during an attack is to get home. That's where she

feels safe. Luckily she's never had an accident so

far, but I'm sure the day will come. When she's at

the height of an attack she's disoriented and

confused. She wants " Mommy " . She drives around, lost,

trying to find her way home.

 

Kim had a baby in July. During the pregnancy she had

a few episodes, but stayed home for the most part.

Now she's back to work, and getting worse. Three

weeks ago we went out to dinner, and a man had chest

pains. The ambulance came and took him away, but not

before he had vomited. The cleaning solution that the

staff used to clean up caused Kim to have an attack.

I could see she wasn't going to last long, so we

finished up dinner. We tried to get Kim outside to a

car to take her to the hospital, and she collapsed.

Then came the vomiting. My husband and sister-in-law

stabilized her while I called for an ambulance. (My

husband and I are EMT's, my sister-in-law is a

Paramedic). Vital signs were not good, and she wasn't

moving any air. She was confused and disoriented.

She got to the hospital, was kept for a few hours

while she was observed, and released. She did have

one more incident while at the hospital, which was

triggered by the cleaning cart outside the door.

Oxygen, breathing treatments, steroids. The usual.

 

Two weeks ago she called me from her car. She had

been to an appointment with the baby, and the lady had

perfume on. Kim was trying to get home. She assured

me she could make it; she was two miles from the house

at the most. I called home to alert my son (14) to

look for her, and headed home. It took me 15 minutes

to get home - no Kim. We managed to get her on her

cell phone. She was lost. We told her to pull over

and park. It was another 15 minutes before we found

her. My husband called the police to help find her.

We found her a few miles from home on a road that is

not on the way home by any stretch of the imagination,

parked as she had been instructed. She had no idea

where she was or

how she got there. I called the police to update them

and order an ambulance. Kim was incoherent for the

most part. Totally out of it. The police arrived (we

got 3 cars total). What scared us the most was me

standing there with my hand on Kim's shoulder while

she was in the drivers seat of her Jeep, and Kim

babbling that she had to call her Mommy so she

wouldn't worry. One of the officers had oxygen, so we

hooked her up to that while we waited for the

ambulance. When the ambulance arrived there was no

time to wait for a paramedic intercept, they basically

loaded her and went straight to the hospital. I

followed. At the hospital Kim failed all the

questions. Wrong birthdate, wrong day of the week,

and so on. She kept insisting she was late for

school. And so on. After some breathing treatments,

iv steroids, and oxygen she was ok to return home.

 

Yesterday we received a phone call from her manager at

work. He used her cell phone to contact us. He had

found Kim wandering around, dazed and confused and

wheezing. He admitted it seemed as though she was

high on drugs, but he knows her condition and knew

that wasn't the case. He had called an ambulance. He

told me when she was laying down, before the ambulance

came, that her eyes rolled back in her head and she

passed out for a few moments. According to the

paramedic, her pulse was up, respirations were up,

audible wheezing, blood sugar of 64, and the scariest

- pulse ox of 74. That's darn close to dead. I met

them at the hospital. Kim was again very confused and

incoherent during most of the long ambulance ride, but

somewhat more " normal " by the time she got to the

hospital. While at the hospital the lady in the next

cubicle sprayed perfume. Kim was later admitted, and

remains there. She's on oxygen, breathing treatments,

and iv steroids again. They're saying she's anemic.

No surprise. And a bunch of other things. But I

think they're missing the whole concept here. " MCS "

is a figment of our imagination. The pulmonologist

that has been treating her for two years doesn't seem

to take this seriously. He thinks steroids are the

answer. Steroids and drugs. Those will kill her

themselves. To keep her breathing she requires

massive doses of too many things.

 

She's getting progressively worse. The memory goes.

No rational thoughts during an attack. " I'm late for

work. I'm late for school. I need to call my Mommy. "

And so on. She has a baby to support, yet allowing

her to work or drive is dangerous. She doesn't

recognize her own mother, me. (She still lives with

us) The incidents are coming more often and are more

severe each time. She's going to die if we can't find

someone to help us!

 

What can I do, where can I go? HELP!

 

Heidi Evans

Evans Group at Keller Williams

275 Greenwood Avenue

Bethel, CT 06801

203-744-7355

www.ctrealtor.net

 

 

 

 

 

 

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