Re: Jimmy's STARband, Painting Tips, and Microcephaly Questions:

[Guest guest]

Sue Ellen -

Sorry for being so ignorant, but what is LCM?

Is it like toxoplasmosis? Is it something that you have to be

concerned with after they are born or before? I am asking all these

questions because we have 3 cats and 2 dogs.

I have all my fingers and toes crossed for Jimmy that the STARband

works. These bands have worked many miracles. I hope Jimmy can be

added to the list

Dane's mom DOC Grad

> Thank you all for the well-wishes and the great decorating tips!

> When I finally get the courage to try the painting (hopefully,

within

> the next week), I'll send pics!

>

> Someone asked me about microcephaly. It means " small

head " / " small

> brain " . For more info, there is a Group dedicated to

micro.

> My son has this condition, as well as others, due to a guinea pig

> infected with LCM I had in the house as a pet for my 7 year old

> daughter.

>

> The brain of a person with micro tends not to grow too much. And

of

> course, in order for the helmets to do their job, the brain MUST

> grow, because the skull grows in conjunction with the brain.

(When

> the brain grows, it pushes the skull outward to form to the inside

of

> the helmet.)

>

> No one is sure if the helmet will help. I suggested it after

finding

> this Group, actually. The cranio-facial surgeon was

doubtful,

> and the neurologist and orthotist said " maybe " . That was enough

for

> me to give it a whirl....after all, my son had a shunt placed in

his

> brain at one day old, and any surgeries I can avoid for him make

it

> worth the chance. My son's plagio is PARTIALLY positional, and

some

> of it is due to the compression of the occipital lobe of the brain

> due to hydrocephalus at birth (too much CSF fluid). When they

> drained the fluid, the back side of his head was noticeably flat.

>

> Micro kids normally have seizure activity and developmental delay

> ranging from mild to severe, sometimes including mental

retardation.

>

> I'll keep you all posted as to whether or not the band works for

> Jimmy. He is the first known micro-kid to try one, and hopefully

it

> will work for him, thus also helping cranio-facial surgeons avoid

> surgery on kids so little....especially since they have already

been

> through so much!

>

> Hope that answwers your questions....if not, let me know!

>

> -Sue Ellen

> Syracuse, NY

[Guest guest]

LCM stands for Lymphocytic Choriomeningitis, and it mimmicks

Toxoplasmosis as far as the symptoms of kids born with

it....microcephaly, hydrocephalus, chorioretinitis, brain

calcifications, and developmental delay and/or mental retardation,

and also the fact that both are only a concern when you are carrying

a child. With Toxo, you need to have direct contact with the

litter. With LCM, it is airborne, hence walking into a pet store

while you are pregnant is not a good idea, although they don't tell

ya that! I'm working on legislation for that now.

Cats and dogs are no bother as far as LCM. LCM is normally found

among rodents....hamsters, guinea pigs, mice, rats, although even

chinchillas, rabbits, swine, and monkeys have been known to carry it

as well, based on what I've read.

Who knew a guinea pig could the cause of all this!!!! (Well,

actually, when I called the major pet store chain I purchased it

from, the Director of Risk Management was completely familiar with

it, and said he would be glad to make certain warnings were posted to

pregnant women just as soon as he was directed to do so legally.) I

told him to be expecting that very soon!!!!

> > Thank you all for the well-wishes and the great decorating tips!

> > When I finally get the courage to try the painting (hopefully,

> within

> > the next week), I'll send pics!

> >

> > Someone asked me about microcephaly. It means " small

> head " / " small

> > brain " . For more info, there is a Group dedicated to

> micro.

> > My son has this condition, as well as others, due to a guinea pig

> > infected with LCM I had in the house as a pet for my 7 year old

> > daughter.

> >

> > The brain of a person with micro tends not to grow too much. And

> of

> > course, in order for the helmets to do their job, the brain MUST

> > grow, because the skull grows in conjunction with the brain.

> (When

> > the brain grows, it pushes the skull outward to form to the

inside

> of

> > the helmet.)

> >

> > No one is sure if the helmet will help. I suggested it after

> finding

> > this Group, actually. The cranio-facial surgeon was

> doubtful,

> > and the neurologist and orthotist said " maybe " . That was enough

> for

> > me to give it a whirl....after all, my son had a shunt placed in

> his

> > brain at one day old, and any surgeries I can avoid for him make

> it

> > worth the chance. My son's plagio is PARTIALLY positional, and

> some

> > of it is due to the compression of the occipital lobe of the

brain

> > due to hydrocephalus at birth (too much CSF fluid). When they

> > drained the fluid, the back side of his head was noticeably flat.

> >

> > Micro kids normally have seizure activity and developmental delay

> > ranging from mild to severe, sometimes including mental

> retardation.

> >

> > I'll keep you all posted as to whether or not the band works for

> > Jimmy. He is the first known micro-kid to try one, and hopefully

> it

> > will work for him, thus also helping cranio-facial surgeons avoid

> > surgery on kids so little....especially since they have already

> been

> > through so much!

> >

> > Hope that answwers your questions....if not, let me know!

> >

> > -Sue Ellen

> > Syracuse, NY

[Guest guest]

Sue Ellen -

Let me know what I can do to help you with your crusade.

I was warned about the litterbox, but nothing else as far as pets

are concerned. Do you know how many times I went into a pet store

during both pregnancies? We were at the Columbus Zoo when I was 7

months preg and it happened that all there kangaroos died that day

from toxoplasmosis. Apparantly there was litter of stray kittens

with toxo in the hay barn, so all the hay was contaminated!

We went with one of my best friends, an OB, who was also preg. We

both went and got tested. I was alarmed that although I had been

around cats the better part of my life, that I had never been

exposed to toxo and had no immunity! Fotunately, we weren't exposed

to it at the zoo either.

Could you sue the pet store owner? I'm sure you're not interested

in pointing the finger, but I bet it would bring it to a lot of

people's attention! Just a thought since he knew what LCM was an

didn't warn anyone.

Thanks for the info. I would love to help you out in your crusade.

You can email me off list if you like!

Dane's mom DOC Grad

Cleveland

> > Sue Ellen -

> > Sorry for being so ignorant, but what is LCM?

> > Is it like toxoplasmosis? Is it something that you have to be

> > concerned with after they are born or before? I am asking all

> these

> > questions because we have 3 cats and 2 dogs.

> > I have all my fingers and toes crossed for Jimmy that the

STARband

> > works. These bands have worked many miracles. I hope Jimmy can

be

> > added to the list

> >

> > Dane's mom DOC Grad

> >

> > --- In Plagiocephaly@y..., " sueellenholmes " <sholmes1@t...>

wrote:

> > > Thank you all for the well-wishes and the great decorating

tips!

> > > When I finally get the courage to try the painting (hopefully,

> > within

> > > the next week), I'll send pics!

> > >

> > > Someone asked me about microcephaly. It means " small

> > head " / " small

> > > brain " . For more info, there is a Group dedicated to

> > micro.

> > > My son has this condition, as well as others, due to a guinea

pig

> > > infected with LCM I had in the house as a pet for my 7 year

old

> > > daughter.

> > >

> > > The brain of a person with micro tends not to grow too much.

And

> > of

> > > course, in order for the helmets to do their job, the brain

MUST

> > > grow, because the skull grows in conjunction with the brain.

> > (When

> > > the brain grows, it pushes the skull outward to form to the

> inside

> > of

> > > the helmet.)

> > >

> > > No one is sure if the helmet will help. I suggested it after

> > finding

> > > this Group, actually. The cranio-facial surgeon was

> > doubtful,

> > > and the neurologist and orthotist said " maybe " . That was

enough

> > for

> > > me to give it a whirl....after all, my son had a shunt placed

in

> > his

> > > brain at one day old, and any surgeries I can avoid for him

make

> > it

> > > worth the chance. My son's plagio is PARTIALLY positional,

and

> > some

> > > of it is due to the compression of the occipital lobe of the

> brain

> > > due to hydrocephalus at birth (too much CSF fluid). When they

> > > drained the fluid, the back side of his head was noticeably

flat.

> > >

> > > Micro kids normally have seizure activity and developmental

delay

> > > ranging from mild to severe, sometimes including mental

> > retardation.

> > >

> > > I'll keep you all posted as to whether or not the band works

for

> > > Jimmy. He is the first known micro-kid to try one, and

hopefully

> > it

> > > will work for him, thus also helping cranio-facial surgeons

avoid

> > > surgery on kids so little....especially since they have

already

> > been

> > > through so much!

> > >

> > > Hope that answwers your questions....if not, let me know!

> > >

> > > -Sue Ellen

> > > Syracuse, NY

[Guest guest]

I would love to help you out in your crusade.

I second that.

> > > > Thank you all for the well-wishes and the great decorating

> tips!

> > > > When I finally get the courage to try the painting

(hopefully,

> > > within

> > > > the next week), I'll send pics!

> > > >

> > > > Someone asked me about microcephaly. It means " small

> > > head " / " small

> > > > brain " . For more info, there is a Group dedicated to

> > > micro.

> > > > My son has this condition, as well as others, due to a guinea

> pig

> > > > infected with LCM I had in the house as a pet for my 7 year

> old

> > > > daughter.

> > > >

> > > > The brain of a person with micro tends not to grow too much.

> And

> > > of

> > > > course, in order for the helmets to do their job, the brain

> MUST

> > > > grow, because the skull grows in conjunction with the brain.

> > > (When

> > > > the brain grows, it pushes the skull outward to form to the

> > inside

> > > of

> > > > the helmet.)

> > > >

> > > > No one is sure if the helmet will help. I suggested it after

> > > finding

> > > > this Group, actually. The cranio-facial surgeon was

> > > doubtful,

> > > > and the neurologist and orthotist said " maybe " . That was

> enough

> > > for

> > > > me to give it a whirl....after all, my son had a shunt placed

> in

> > > his

> > > > brain at one day old, and any surgeries I can avoid for him

> make

> > > it

> > > > worth the chance. My son's plagio is PARTIALLY positional,

> and

> > > some

> > > > of it is due to the compression of the occipital lobe of the

> > brain

> > > > due to hydrocephalus at birth (too much CSF fluid). When

they

> > > > drained the fluid, the back side of his head was noticeably

> flat.

> > > >

> > > > Micro kids normally have seizure activity and developmental

> delay

> > > > ranging from mild to severe, sometimes including mental

> > > retardation.

> > > >

> > > > I'll keep you all posted as to whether or not the band works

> for

> > > > Jimmy. He is the first known micro-kid to try one, and

> hopefully

> > > it

> > > > will work for him, thus also helping cranio-facial surgeons

> avoid

> > > > surgery on kids so little....especially since they have

> already

> > > been

> > > > through so much!

> > > >

> > > > Hope that answwers your questions....if not, let me know!

> > > >

> > > > -Sue Ellen

> > > > Syracuse, NY

[Guest guest]

Sue Ellen:

Thank you for your definition of Jimmy's condition. My heart goes

out to you & your family. It sure does sound like Jimmy has been

thru a lot in such a short time being on this earth . Do you

notice any developmental delays as of yet with Jimmy?

What a shame this was caused by a guinea pig?? That's scary.

I will pray that Jimmy's band will help his head shape. Sounds like

he is a tough little fella.....I am sure he'll get some improvement!

I look forward to seeing pictures of his painted band soon.

Best of luck

Debbie Abby's mom DOCGrad

MI

> Thank you all for the well-wishes and the great decorating tips!

> When I finally get the courage to try the painting (hopefully,

within

> the next week), I'll send pics!

>

> Someone asked me about microcephaly. It means " small

head " / " small

> brain " . For more info, there is a Group dedicated to micro.

> My son has this condition, as well as others, due to a guinea pig

> infected with LCM I had in the house as a pet for my 7 year old

> daughter.

>

> The brain of a person with micro tends not to grow too much. And

of

> course, in order for the helmets to do their job, the brain MUST

> grow, because the skull grows in conjunction with the brain. (When

> the brain grows, it pushes the skull outward to form to the inside

of

> the helmet.)

>

> No one is sure if the helmet will help. I suggested it after

finding

> this Group, actually. The cranio-facial surgeon was

doubtful,

> and the neurologist and orthotist said " maybe " . That was enough

for

> me to give it a whirl....after all, my son had a shunt placed in

his

> brain at one day old, and any surgeries I can avoid for him make it

> worth the chance. My son's plagio is PARTIALLY positional, and

some

> of it is due to the compression of the occipital lobe of the brain

> due to hydrocephalus at birth (too much CSF fluid). When they

> drained the fluid, the back side of his head was noticeably flat.

>

> Micro kids normally have seizure activity and developmental delay

> ranging from mild to severe, sometimes including mental retardation.

>

> I'll keep you all posted as to whether or not the band works for

> Jimmy. He is the first known micro-kid to try one, and hopefully

it

> will work for him, thus also helping cranio-facial surgeons avoid

> surgery on kids so little....especially since they have already

been

> through so much!

>

> Hope that answwers your questions....if not, let me know!

>

> -Sue Ellen

> Syracuse, NY

[Guest guest]

Thanks again, everyone, for your support! The NY State Health Dept.

is now interested in helping me to educate pediatricians and OB-GYNs

about LCM! I got the call yesterday afternoon! For all of you

interested in helping my " crusade " , if petitions become necessary,

I'll let ya know!

I read a poll on the Microcephaly Group that stated that 52.5%

of all kids with microcephaly never got a complete diagnosis. In

other words, they don't know how they ended-up with it! It's amazing

that all these kids COULD have been exposed in-utero to LCM. Many

are now going to get tested for increased antibodies. I'll keep you

posted on this.

Despite everything, Jimmy is right on target so far in development.

I'm told that I won't " start noticing delays " until 9-12 months of

age. Either way, he is one terrific kid! One day he'll be old

enough to know that because of him, other moms will be warned, and

hopefully, won't be exposed to LCM during their pregnancies!

I hope his STARband works, too. It would be so nice to be able to

tell the other micro moms that their kids may be able to avoid

surgery!!!!

Thanks again, everyone!

> > Thank you all for the well-wishes and the great decorating tips!

> > When I finally get the courage to try the painting (hopefully,

> within

> > the next week), I'll send pics!

> >

> > Someone asked me about microcephaly. It means " small

> head " / " small

> > brain " . For more info, there is a Group dedicated to

micro.

> > My son has this condition, as well as others, due to a guinea pig

> > infected with LCM I had in the house as a pet for my 7 year old

> > daughter.

> >

> > The brain of a person with micro tends not to grow too much. And

> of

> > course, in order for the helmets to do their job, the brain MUST

> > grow, because the skull grows in conjunction with the brain.

(When

> > the brain grows, it pushes the skull outward to form to the

inside

> of

> > the helmet.)

> >

> > No one is sure if the helmet will help. I suggested it after

> finding

> > this Group, actually. The cranio-facial surgeon was

> doubtful,

> > and the neurologist and orthotist said " maybe " . That was enough

> for

> > me to give it a whirl....after all, my son had a shunt placed in

> his

> > brain at one day old, and any surgeries I can avoid for him make

it

> > worth the chance. My son's plagio is PARTIALLY positional, and

> some

> > of it is due to the compression of the occipital lobe of the

brain

> > due to hydrocephalus at birth (too much CSF fluid). When they

> > drained the fluid, the back side of his head was noticeably flat.

> >

> > Micro kids normally have seizure activity and developmental delay

> > ranging from mild to severe, sometimes including mental

retardation.

> >

> > I'll keep you all posted as to whether or not the band works for

> > Jimmy. He is the first known micro-kid to try one, and hopefully

> it

> > will work for him, thus also helping cranio-facial surgeons avoid

> > surgery on kids so little....especially since they have already

> been

> > through so much!

> >

> > Hope that answwers your questions....if not, let me know!

> >

> > -Sue Ellen

> > Syracuse, NY

[Guest guest]

Wow Sue Ellen:

You really have such a terrific attitude! Jimmy is very fortunate to

have such a great mommy - and you are very fortunate to have Jimmy I

am sure.

That's terrific the NY State Health Dept has contacted you about this

& do what your help to spread the word & warn others of this danger.

Definitely let us know if petitions will be necessary .

Keep us posted on Jimmy's STARband progress.

Debbie Abby's mom DOCGrad

MI

> > > Thank you all for the well-wishes and the great decorating

tips!

> > > When I finally get the courage to try the painting (hopefully,

> > within

> > > the next week), I'll send pics!

> > >

> > > Someone asked me about microcephaly. It means " small

> > head " / " small

> > > brain " . For more info, there is a Group dedicated to

> micro.

> > > My son has this condition, as well as others, due to a guinea

pig

> > > infected with LCM I had in the house as a pet for my 7 year old

> > > daughter.

> > >

> > > The brain of a person with micro tends not to grow too much.

And

> > of

> > > course, in order for the helmets to do their job, the brain

MUST

> > > grow, because the skull grows in conjunction with the brain.

> (When

> > > the brain grows, it pushes the skull outward to form to the

> inside

> > of

> > > the helmet.)

> > >

> > > No one is sure if the helmet will help. I suggested it after

> > finding

> > > this Group, actually. The cranio-facial surgeon was

> > doubtful,

> > > and the neurologist and orthotist said " maybe " . That was

enough

> > for

> > > me to give it a whirl....after all, my son had a shunt placed

in

> > his

> > > brain at one day old, and any surgeries I can avoid for him

make

> it

> > > worth the chance. My son's plagio is PARTIALLY positional, and

> > some

> > > of it is due to the compression of the occipital lobe of the

> brain

> > > due to hydrocephalus at birth (too much CSF fluid). When they

> > > drained the fluid, the back side of his head was noticeably

flat.

> > >

> > > Micro kids normally have seizure activity and developmental

delay

> > > ranging from mild to severe, sometimes including mental

> retardation.

> > >

> > > I'll keep you all posted as to whether or not the band works

for

> > > Jimmy. He is the first known micro-kid to try one, and

hopefully

> > it

> > > will work for him, thus also helping cranio-facial surgeons

avoid

> > > surgery on kids so little....especially since they have already

> > been

> > > through so much!

> > >

> > > Hope that answwers your questions....if not, let me know!

> > >

> > > -Sue Ellen

> > > Syracuse, NY

[Guest guest]

Sue Ellen, thank you so much for sharing your story. You are a very strong

woman

to lead this crusade. I really admire you and wish you and Jimmy the best.

Fingers

crossed for good correction!!

ann/

NJ

> Message: 3

> Date: Tue, 18 Jun 2002 23:24:37 -0000

> From: " sueellenholmes " <sholmes1@...>

> Subject: Re: Jimmy's STARband, Painting Tips, and Microcephaly Questions:

>

> LCM stands for Lymphocytic Choriomeningitis, and it mimmicks

> Toxoplasmosis as far as the symptoms of kids born with

> it....microcephaly, hydrocephalus, chorioretinitis, brain

> calcifications, and developmental delay and/or mental retardation,

> and also the fact that both are only a concern when you are carrying

> a child. With Toxo, you need to have direct contact with the

> litter. With LCM, it is airborne, hence walking into a pet store

> while you are pregnant is not a good idea, although they don't tell

> ya that! I'm working on legislation for that now.

>

> Cats and dogs are no bother as far as LCM. LCM is normally found

> among rodents....hamsters, guinea pigs, mice, rats, although even

> chinchillas, rabbits, swine, and monkeys have been known to carry it

> as well, based on what I've read.

>

> Who knew a guinea pig could the cause of all this!!!! (Well,

> actually, when I called the major pet store chain I purchased it

> from, the Director of Risk Management was completely familiar with

> it, and said he would be glad to make certain warnings were posted to

> pregnant women just as soon as he was directed to do so legally.) I

> told him to be expecting that very soon!!!!

>