Re: Heidi and Hailey

October 30, 2001

Hi Heidi,

Thank you for sharing your thoughts with us. My

husband and I are in the same predicament: 1st child

(baby ) with PMG of unknown cause. We may never

know the cause. Baby is 5 months old and was

diagnosed at 1 month with PMG. Like you, we had a MRI

and the radiologist misread it telling us the baby had

Lissencephaly and told us he woudn't walk, talk and

was very ill. We got a second opinion from a neuro. He

took onr look at the baby and said our son was not as

ill as all of that- his review of the MRI was PMG.

Baby had done well with early intervention and

is so far meeting his milestones. He loves food,

especially green beans and is trying so hard to hold

his bottle. He's figured out that, even though he

can't use his hands very well due to PMG, he can hold

my hand and pull the bottle in and out of his mouth!

He greatly enjoys showing us his feats. Welcome to the

group.

Schott

Houston, Texas

--- HEIDI FAUSTINI wrote:

> HELLO TO EVERYONE

>

> My name is Heidi. I have a beautiful 16 1/2 month

> old daughter, Hailey, who was diagnosed with UPP (

> Unilateral Perisylvian Polymicrogeria ) on the right

> side of her brain about a week ago. She is my first

> child, and now probably my last, but she does have

> two half brothers, Dylan- who will turn 4 in Dec.,

> and Dakota- who will turn 3 this Sat. We get the

> boys on weekends, so in some ways I do have 3 kids.

> It is just so frustrating not knowing why Hailey has

> this or if the next child would get it also- so,

> unfortunately, no more kids for me.

> At Hailey's 9 month check-up, I told her doctor that

> I felt she was not where she should have been

> developmentally. He noticed that she had low tone in

> her neck and trunk area. She also kept her left hand

> fisted quite a bit. Hailey had just started rolling

> over, could not sit up, and had a hard time keeping

> her head up. Her doctor ordered an MRI which

> revealed that the right side of her brain was only

> about 1/3 the size it should have been. The

> radiologist had also noted Lissencephaly on that

> side. We went to a neurologist who said that it was

> not Lissencephaly, but she'd had a stroke in utero

> between 3-5 months. A second neurologist said the

> same thing and ordered genetics testing. The

> geneticists found nothing but showed the MRI to her

> radiologist, who also said Lissencephaly. By then

> we'd had two radiologists say yes and two

> neurologists say no. We sent the MRI to Dr.

> Dobyns in Chicago, who notified us that it was PMG.

> So now we search for all the information we can

> find.

> From what I have read about PMG, it seems that

> Hailey is at the better end of the scale. She has

> not had seizures, is not a sickly child, does show

> progress, etc. She is at about a six month level and

> has OT, PT, Feeding Therapy, Home Therapy, and will

> eventually start Speech Therapy . She does not have

> a G-tube, but does eat baby food out of a feeding

> bottle and drink milk out of a regular bottle. She

> is working on eating crackers, Cheerios, peanut

> butter, etc. Her feeding therapy is to teach her how

> to use all of her mouth, lip, and jaw muscles

> together. She has shown great improvements with it.

> At 16 months she weighs 23 lbs., so we don't have to

> worry too much about it. { She looks like a little

> cherub! } She still can not sit up for more than 15

> seconds by herself, and can only grab at things a

> little bit and only with her right hand. She has

> shown improvement across the board and continues to

> do so. It would be nice to know what we can look

> forward to, but I understand that you just never

> know. After hearing all of the negative things about

> PMG, it is very nice to hear the positive outcomes

> from other parents. It gives us hope. Hearing that

> have been a few adults with PMG was very reassuring,

> given that life span is an issue. Also hearing

> stories of children mainstream in school was such

> great news. We all want our children to have a

> " normal " life, and that information was promising.

> I also would like to hear from anyone who knows

> first hand about HBO ( Hyperbarric Oxygen )

> treatments. This is something I am very interested

> in, since it seems to prove very promising for the

> Cerebral Palsy aspects of PMG.

> Any information would be greatly appreciated, on

> HBO, PMG or anything else you have found useful.

> Thank you,

> Heidi

> Re: File - Request.txt

> >

> > We have a daughter 17 who has bi-lateral

> perisylvian. We recdently

> contacted

> > MUMS and one of the parents Wickman gave

> us this sites address.

> > Our daughter is just about grown and is really

> doing well. When she was

> > younger we didn't really have much to go on in the

> way of information or

> > advice on her condition and just thought it would

> be nice to give

> > encouragement to others and see if there's

> anything we might have missed

> in

> > the way of medical advice.

> >

> > Sincerely,

> > Jerry

> > White

> >

October 30, 2001

, Thanks for your story. It sounds like is doing well. Hailey can't

hold her bottle at 16 months, but sometimes does the same thing as him by

holding my thumb and pulling it to her! Keep me updated.

Heidi

Re: File - Request.txt

> >

> > We have a daughter 17 who has bi-lateral

> perisylvian. We recdently

> contacted

> > MUMS and one of the parents Wickman gave

> us this sites address.

> > Our daughter is just about grown and is really

> doing well. When she was

> > younger we didn't really have much to go on in the

> way of information or

> > advice on her condition and just thought it would

> be nice to give

> > encouragement to others and see if there's

> anything we might have missed

> in

> > the way of medical advice.

> >

> > Sincerely,

> > Jerry

> > White

> >

October 30, 2001

, Thanks for your story. It sounds like is doing well. Hailey can't

hold her bottle at 16 months, but sometimes does the same thing as him by

holding my thumb and pulling it to her! Keep me updated.

Heidi

Re: File - Request.txt

> >

> > We have a daughter 17 who has bi-lateral

> perisylvian. We recdently

> contacted

> > MUMS and one of the parents Wickman gave

> us this sites address.

> > Our daughter is just about grown and is really

> doing well. When she was

> > younger we didn't really have much to go on in the

> way of information or

> > advice on her condition and just thought it would

> be nice to give

> > encouragement to others and see if there's

> anything we might have missed

> in

> > the way of medical advice.

> >

> > Sincerely,

> > Jerry

> > White

> >

October 30, 2001

, Thanks for your story. It sounds like is doing well. Hailey can't

hold her bottle at 16 months, but sometimes does the same thing as him by

holding my thumb and pulling it to her! Keep me updated.

Heidi

Re: File - Request.txt

> >

> > We have a daughter 17 who has bi-lateral

> perisylvian. We recdently

> contacted

> > MUMS and one of the parents Wickman gave

> us this sites address.

> > Our daughter is just about grown and is really

> doing well. When she was

> > younger we didn't really have much to go on in the

> way of information or

> > advice on her condition and just thought it would

> be nice to give

> > encouragement to others and see if there's

> anything we might have missed

> in

> > the way of medical advice.

> >

> > Sincerely,

> > Jerry

> > White

> >

October 30, 2001

Hi Heidi and ,

My son, , was diagnosed with PMG at 4mos. Like you both, we

aren't sure about other children. We had genetic testing done with

Dr. Kamer Tezcan with CT Children's Hospital.

Right now we know that Josh's chromosomes/genes are normal on a

global level and the infectious study came back negative. I am

filling out release forms so the Walch Labrotries in Boston, MA

(associated with Harvard Medical) can review his blood.

The chance of us having another child with PMG is 0% to 25% chance.

Once get a more diffinitive diagnosis Dr. Tezcan said she could

narrow down the probablity of this happening again.

She's very nice. Asked how we were doing. Talked to us not above

us. Took her time to make sure she explained the terminology so we

could understand.

It sounds like Josh is on the same level as your kids. He's trying

his hardest to grab things.. He really wants to hold his bottle he'll

get one hand on it but not both. He does grab my hand and pull it.

It's nice to hear Josh is " like " someone else. Physically he is very

behind for his age. He is 7mos old and can't roll over, sit up. He's

just started holding his up better.

Dawn, mom to 7mos w/PMG

> > HELLO TO EVERYONE

> >

> > My name is Heidi. I have a beautiful 16 1/2 month

> > old daughter, Hailey, who was diagnosed with UPP (

> > Unilateral Perisylvian Polymicrogeria ) on the right

> > side of her brain about a week ago. She is my first

> > child, and now probably my last, but she does have

> > two half brothers, Dylan- who will turn 4 in Dec.,

> > and Dakota- who will turn 3 this Sat. We get the

> > boys on weekends, so in some ways I do have 3 kids.

> > It is just so frustrating not knowing why Hailey has

> > this or if the next child would get it also- so,

> > unfortunately, no more kids for me.

> > At Hailey's 9 month check-up, I told her doctor that

> > I felt she was not where she should have been

> > developmentally. He noticed that she had low tone in

> > her neck and trunk area. She also kept her left hand

> > fisted quite a bit. Hailey had just started rolling

> > over, could not sit up, and had a hard time keeping

> > her head up. Her doctor ordered an MRI which

> > revealed that the right side of her brain was only

> > about 1/3 the size it should have been. The

> > radiologist had also noted Lissencephaly on that

> > side. We went to a neurologist who said that it was

> > not Lissencephaly, but she'd had a stroke in utero

> > between 3-5 months. A second neurologist said the

> > same thing and ordered genetics testing. The

> > geneticists found nothing but showed the MRI to her

> > radiologist, who also said Lissencephaly. By then

> > we'd had two radiologists say yes and two

> > neurologists say no. We sent the MRI to Dr.

> > Dobyns in Chicago, who notified us that it was PMG.

> > So now we search for all the information we can

> > find.

> > From what I have read about PMG, it seems that

> > Hailey is at the better end of the scale. She has

> > not had seizures, is not a sickly child, does show

> > progress, etc. She is at about a six month level and

> > has OT, PT, Feeding Therapy, Home Therapy, and will

> > eventually start Speech Therapy . She does not have

> > a G-tube, but does eat baby food out of a feeding

> > bottle and drink milk out of a regular bottle. She

> > is working on eating crackers, Cheerios, peanut

> > butter, etc. Her feeding therapy is to teach her how

> > to use all of her mouth, lip, and jaw muscles

> > together. She has shown great improvements with it.

> > At 16 months she weighs 23 lbs., so we don't have to

> > worry too much about it. { She looks like a little

> > cherub! } She still can not sit up for more than 15

> > seconds by herself, and can only grab at things a

> > little bit and only with her right hand. She has

> > shown improvement across the board and continues to

> > do so. It would be nice to know what we can look

> > forward to, but I understand that you just never

> > know. After hearing all of the negative things about

> > PMG, it is very nice to hear the positive outcomes

> > from other parents. It gives us hope. Hearing that

> > have been a few adults with PMG was very reassuring,

> > given that life span is an issue. Also hearing

> > stories of children mainstream in school was such

> > great news. We all want our children to have a

> > " normal " life, and that information was promising.

> > I also would like to hear from anyone who knows

> > first hand about HBO ( Hyperbarric Oxygen )

> > treatments. This is something I am very interested

> > in, since it seems to prove very promising for the

> > Cerebral Palsy aspects of PMG.

> > Any information would be greatly appreciated, on

> > HBO, PMG or anything else you have found useful.

> > Thank you,

> > Heidi

> > Re: File - Request.txt

> > >

> > > We have a daughter 17 who has bi-lateral

> > perisylvian. We recdently

> > contacted

> > > MUMS and one of the parents Wickman gave

> > us this sites address.

> > > Our daughter is just about grown and is really

> > doing well. When she was

> > > younger we didn't really have much to go on in the

> > way of information or

> > > advice on her condition and just thought it would

> > be nice to give

> > > encouragement to others and see if there's

> > anything we might have missed

> > in

> > > the way of medical advice.

> > >

> > > Sincerely,

> > > Jerry

> > > White

> > >

October 30, 2001

Hi Heidi and ,

My son, , was diagnosed with PMG at 4mos. Like you both, we

aren't sure about other children. We had genetic testing done with

Dr. Kamer Tezcan with CT Children's Hospital.

Right now we know that Josh's chromosomes/genes are normal on a

global level and the infectious study came back negative. I am

filling out release forms so the Walch Labrotries in Boston, MA

(associated with Harvard Medical) can review his blood.

The chance of us having another child with PMG is 0% to 25% chance.

Once get a more diffinitive diagnosis Dr. Tezcan said she could

narrow down the probablity of this happening again.

She's very nice. Asked how we were doing. Talked to us not above

us. Took her time to make sure she explained the terminology so we

could understand.

It sounds like Josh is on the same level as your kids. He's trying

his hardest to grab things.. He really wants to hold his bottle he'll

get one hand on it but not both. He does grab my hand and pull it.

It's nice to hear Josh is " like " someone else. Physically he is very

behind for his age. He is 7mos old and can't roll over, sit up. He's

just started holding his up better.

Dawn, mom to 7mos w/PMG

> > HELLO TO EVERYONE

> >

> > My name is Heidi. I have a beautiful 16 1/2 month

> > old daughter, Hailey, who was diagnosed with UPP (

> > Unilateral Perisylvian Polymicrogeria ) on the right

> > side of her brain about a week ago. She is my first

> > child, and now probably my last, but she does have

> > two half brothers, Dylan- who will turn 4 in Dec.,

> > and Dakota- who will turn 3 this Sat. We get the

> > boys on weekends, so in some ways I do have 3 kids.

> > It is just so frustrating not knowing why Hailey has

> > this or if the next child would get it also- so,

> > unfortunately, no more kids for me.

> > At Hailey's 9 month check-up, I told her doctor that

> > I felt she was not where she should have been

> > developmentally. He noticed that she had low tone in

> > her neck and trunk area. She also kept her left hand

> > fisted quite a bit. Hailey had just started rolling

> > over, could not sit up, and had a hard time keeping

> > her head up. Her doctor ordered an MRI which

> > revealed that the right side of her brain was only

> > about 1/3 the size it should have been. The

> > radiologist had also noted Lissencephaly on that

> > side. We went to a neurologist who said that it was

> > not Lissencephaly, but she'd had a stroke in utero

> > between 3-5 months. A second neurologist said the

> > same thing and ordered genetics testing. The

> > geneticists found nothing but showed the MRI to her

> > radiologist, who also said Lissencephaly. By then

> > we'd had two radiologists say yes and two

> > neurologists say no. We sent the MRI to Dr.

> > Dobyns in Chicago, who notified us that it was PMG.

> > So now we search for all the information we can

> > find.

> > From what I have read about PMG, it seems that

> > Hailey is at the better end of the scale. She has

> > not had seizures, is not a sickly child, does show

> > progress, etc. She is at about a six month level and

> > has OT, PT, Feeding Therapy, Home Therapy, and will

> > eventually start Speech Therapy . She does not have

> > a G-tube, but does eat baby food out of a feeding

> > bottle and drink milk out of a regular bottle. She

> > is working on eating crackers, Cheerios, peanut

> > butter, etc. Her feeding therapy is to teach her how

> > to use all of her mouth, lip, and jaw muscles

> > together. She has shown great improvements with it.

> > At 16 months she weighs 23 lbs., so we don't have to

> > worry too much about it. { She looks like a little

> > cherub! } She still can not sit up for more than 15

> > seconds by herself, and can only grab at things a

> > little bit and only with her right hand. She has

> > shown improvement across the board and continues to

> > do so. It would be nice to know what we can look

> > forward to, but I understand that you just never

> > know. After hearing all of the negative things about

> > PMG, it is very nice to hear the positive outcomes

> > from other parents. It gives us hope. Hearing that

> > have been a few adults with PMG was very reassuring,

> > given that life span is an issue. Also hearing

> > stories of children mainstream in school was such

> > great news. We all want our children to have a

> > " normal " life, and that information was promising.

> > I also would like to hear from anyone who knows

> > first hand about HBO ( Hyperbarric Oxygen )

> > treatments. This is something I am very interested

> > in, since it seems to prove very promising for the

> > Cerebral Palsy aspects of PMG.

> > Any information would be greatly appreciated, on

> > HBO, PMG or anything else you have found useful.

> > Thank you,

> > Heidi

> > Re: File - Request.txt

> > >

> > > We have a daughter 17 who has bi-lateral

> > perisylvian. We recdently

> > contacted

> > > MUMS and one of the parents Wickman gave

> > us this sites address.

> > > Our daughter is just about grown and is really

> > doing well. When she was

> > > younger we didn't really have much to go on in the

> > way of information or

> > > advice on her condition and just thought it would

> > be nice to give

> > > encouragement to others and see if there's

> > anything we might have missed

> > in

> > > the way of medical advice.

> > >

> > > Sincerely,

> > > Jerry

> > > White

> > >

October 30, 2001

Hi Heidi and ,

My son, , was diagnosed with PMG at 4mos. Like you both, we

aren't sure about other children. We had genetic testing done with

Dr. Kamer Tezcan with CT Children's Hospital.

Right now we know that Josh's chromosomes/genes are normal on a

global level and the infectious study came back negative. I am

filling out release forms so the Walch Labrotries in Boston, MA

(associated with Harvard Medical) can review his blood.

The chance of us having another child with PMG is 0% to 25% chance.

Once get a more diffinitive diagnosis Dr. Tezcan said she could

narrow down the probablity of this happening again.

She's very nice. Asked how we were doing. Talked to us not above

us. Took her time to make sure she explained the terminology so we

could understand.

It sounds like Josh is on the same level as your kids. He's trying

his hardest to grab things.. He really wants to hold his bottle he'll

get one hand on it but not both. He does grab my hand and pull it.

It's nice to hear Josh is " like " someone else. Physically he is very

behind for his age. He is 7mos old and can't roll over, sit up. He's

just started holding his up better.

Dawn, mom to 7mos w/PMG

> > HELLO TO EVERYONE

> >

> > My name is Heidi. I have a beautiful 16 1/2 month

> > old daughter, Hailey, who was diagnosed with UPP (

> > Unilateral Perisylvian Polymicrogeria ) on the right

> > side of her brain about a week ago. She is my first

> > child, and now probably my last, but she does have

> > two half brothers, Dylan- who will turn 4 in Dec.,

> > and Dakota- who will turn 3 this Sat. We get the

> > boys on weekends, so in some ways I do have 3 kids.

> > It is just so frustrating not knowing why Hailey has

> > this or if the next child would get it also- so,

> > unfortunately, no more kids for me.

> > At Hailey's 9 month check-up, I told her doctor that

> > I felt she was not where she should have been

> > developmentally. He noticed that she had low tone in

> > her neck and trunk area. She also kept her left hand

> > fisted quite a bit. Hailey had just started rolling

> > over, could not sit up, and had a hard time keeping

> > her head up. Her doctor ordered an MRI which

> > revealed that the right side of her brain was only

> > about 1/3 the size it should have been. The

> > radiologist had also noted Lissencephaly on that

> > side. We went to a neurologist who said that it was

> > not Lissencephaly, but she'd had a stroke in utero

> > between 3-5 months. A second neurologist said the

> > same thing and ordered genetics testing. The

> > geneticists found nothing but showed the MRI to her

> > radiologist, who also said Lissencephaly. By then

> > we'd had two radiologists say yes and two

> > neurologists say no. We sent the MRI to Dr.

> > Dobyns in Chicago, who notified us that it was PMG.

> > So now we search for all the information we can

> > find.

> > From what I have read about PMG, it seems that

> > Hailey is at the better end of the scale. She has

> > not had seizures, is not a sickly child, does show

> > progress, etc. She is at about a six month level and

> > has OT, PT, Feeding Therapy, Home Therapy, and will

> > eventually start Speech Therapy . She does not have

> > a G-tube, but does eat baby food out of a feeding

> > bottle and drink milk out of a regular bottle. She

> > is working on eating crackers, Cheerios, peanut

> > butter, etc. Her feeding therapy is to teach her how

> > to use all of her mouth, lip, and jaw muscles

> > together. She has shown great improvements with it.

> > At 16 months she weighs 23 lbs., so we don't have to

> > worry too much about it. { She looks like a little

> > cherub! } She still can not sit up for more than 15

> > seconds by herself, and can only grab at things a

> > little bit and only with her right hand. She has

> > shown improvement across the board and continues to

> > do so. It would be nice to know what we can look

> > forward to, but I understand that you just never

> > know. After hearing all of the negative things about

> > PMG, it is very nice to hear the positive outcomes

> > from other parents. It gives us hope. Hearing that

> > have been a few adults with PMG was very reassuring,

> > given that life span is an issue. Also hearing

> > stories of children mainstream in school was such

> > great news. We all want our children to have a

> > " normal " life, and that information was promising.

> > I also would like to hear from anyone who knows

> > first hand about HBO ( Hyperbarric Oxygen )

> > treatments. This is something I am very interested

> > in, since it seems to prove very promising for the

> > Cerebral Palsy aspects of PMG.

> > Any information would be greatly appreciated, on

> > HBO, PMG or anything else you have found useful.

> > Thank you,

> > Heidi

> > Re: File - Request.txt

> > >

> > > We have a daughter 17 who has bi-lateral

> > perisylvian. We recdently

> > contacted

> > > MUMS and one of the parents Wickman gave

> > us this sites address.

> > > Our daughter is just about grown and is really

> > doing well. When she was

> > > younger we didn't really have much to go on in the

> > way of information or

> > > advice on her condition and just thought it would

> > be nice to give

> > > encouragement to others and see if there's

> > anything we might have missed

> > in

> > > the way of medical advice.

> > >

> > > Sincerely,

> > > Jerry

> > > White

> > >

October 30, 2001

Hi Dawn,

What parts of 's brain are affected? We've done

genetic studies and infectious studies as well and

they are all normal so far. It's so darn frustrating.

Do you have a PT working with him? It's helped with

even at this young age.

--- dawn.werner@... wrote:

> Hi Heidi and ,

>

> My son, , was diagnosed with PMG at 4mos. Like

> you both, we

> aren't sure about other children. We had genetic

> testing done with

> Dr. Kamer Tezcan with CT Children's Hospital.

>

> Right now we know that Josh's chromosomes/genes are

> normal on a

> global level and the infectious study came back

> negative. I am

> filling out release forms so the Walch Labrotries in

> Boston, MA

> (associated with Harvard Medical) can review his

> blood.

>

> The chance of us having another child with PMG is 0%

> to 25% chance.

> Once get a more diffinitive diagnosis Dr. Tezcan

> said she could

> narrow down the probablity of this happening again.

>

> She's very nice. Asked how we were doing. Talked

> to us not above

> us. Took her time to make sure she explained the

> terminology so we

> could understand.

>

> It sounds like Josh is on the same level as your

> kids. He's trying

> his hardest to grab things.. He really wants to hold

> his bottle he'll

> get one hand on it but not both. He does grab my

> hand and pull it.

>

> It's nice to hear Josh is " like " someone else.

> Physically he is very

> behind for his age. He is 7mos old and can't roll

> over, sit up. He's

> just started holding his up better.

>

> Dawn, mom to 7mos w/PMG

>

> > > HELLO TO EVERYONE

> > >

> > > My name is Heidi. I have a beautiful 16 1/2

> month

> > > old daughter, Hailey, who was diagnosed with UPP

> (

> > > Unilateral Perisylvian Polymicrogeria ) on the

> right

> > > side of her brain about a week ago. She is my

> first

> > > child, and now probably my last, but she does

> have

> > > two half brothers, Dylan- who will turn 4 in

> Dec.,

> > > and Dakota- who will turn 3 this Sat. We get the

> > > boys on weekends, so in some ways I do have 3

> kids.

> > > It is just so frustrating not knowing why Hailey

> has

> > > this or if the next child would get it also- so,

> > > unfortunately, no more kids for me.

> > > At Hailey's 9 month check-up, I told her doctor

> that

> > > I felt she was not where she should have been

> > > developmentally. He noticed that she had low

> tone in

> > > her neck and trunk area. She also kept her left

> hand

> > > fisted quite a bit. Hailey had just started

> rolling

> > > over, could not sit up, and had a hard time

> keeping

> > > her head up. Her doctor ordered an MRI which

> > > revealed that the right side of her brain was

> only

> > > about 1/3 the size it should have been. The

> > > radiologist had also noted Lissencephaly on that

> > > side. We went to a neurologist who said that it

> was

> > > not Lissencephaly, but she'd had a stroke in

> utero

> > > between 3-5 months. A second neurologist said

> the

> > > same thing and ordered genetics testing. The

> > > geneticists found nothing but showed the MRI to

> her

> > > radiologist, who also said Lissencephaly. By

> then

> > > we'd had two radiologists say yes and two

> > > neurologists say no. We sent the MRI to Dr.

>

> > > Dobyns in Chicago, who notified us that it was

> PMG.

> > > So now we search for all the information we can

> > > find.

> > > From what I have read about PMG, it seems that

> > > Hailey is at the better end of the scale. She

> has

> > > not had seizures, is not a sickly child, does

> show

> > > progress, etc. She is at about a six month level

> and

> > > has OT, PT, Feeding Therapy, Home Therapy, and

> will

> > > eventually start Speech Therapy . She does not

> have

> > > a G-tube, but does eat baby food out of a

> feeding

> > > bottle and drink milk out of a regular bottle.

> She

> > > is working on eating crackers, Cheerios, peanut

> > > butter, etc. Her feeding therapy is to teach her

> how

> > > to use all of her mouth, lip, and jaw muscles

> > > together. She has shown great improvements with

> it.

> > > At 16 months she weighs 23 lbs., so we don't

> have to

> > > worry too much about it. { She looks like a

> little

> > > cherub! } She still can not sit up for more than

> 15

> > > seconds by herself, and can only grab at things

> a

> > > little bit and only with her right hand. She has

> > > shown improvement across the board and continues

> to

> > > do so. It would be nice to know what we can look

> > > forward to, but I understand that you just never

> > > know. After hearing all of the negative things

> about

> > > PMG, it is very nice to hear the positive

> outcomes

> > > from other parents. It gives us hope. Hearing

> that

> > > have been a few adults with PMG was very

> reassuring,

> > > given that life span is an issue. Also hearing

> > > stories of children mainstream in school was

> such

> > > great news. We all want our children to have a

> > > " normal " life, and that information was

> promising.

> > > I also would like to hear from anyone who knows

> > > first hand about HBO ( Hyperbarric Oxygen )

> > > treatments. This is something I am very

> interested

> > > in, since it seems to prove very promising for

> the

> > > Cerebral Palsy aspects of PMG.

> > > Any information would be greatly appreciated, on

> > > HBO, PMG or anything else you have found useful.

> > > Thank you,

> > > Heidi

> > > Re: New Member - Jerry

>

=== message truncated ===

__________________________________________________

October 30, 2001

Hi Dawn,

What parts of 's brain are affected? We've done

genetic studies and infectious studies as well and

they are all normal so far. It's so darn frustrating.

Do you have a PT working with him? It's helped with

even at this young age.

--- dawn.werner@... wrote:

> Hi Heidi and ,

>

> My son, , was diagnosed with PMG at 4mos. Like

> you both, we

> aren't sure about other children. We had genetic

> testing done with

> Dr. Kamer Tezcan with CT Children's Hospital.

>

> Right now we know that Josh's chromosomes/genes are

> normal on a

> global level and the infectious study came back

> negative. I am

> filling out release forms so the Walch Labrotries in

> Boston, MA

> (associated with Harvard Medical) can review his

> blood.

>

> The chance of us having another child with PMG is 0%

> to 25% chance.

> Once get a more diffinitive diagnosis Dr. Tezcan

> said she could

> narrow down the probablity of this happening again.

>

> She's very nice. Asked how we were doing. Talked

> to us not above

> us. Took her time to make sure she explained the

> terminology so we

> could understand.

>

> It sounds like Josh is on the same level as your

> kids. He's trying

> his hardest to grab things.. He really wants to hold

> his bottle he'll

> get one hand on it but not both. He does grab my

> hand and pull it.

>

> It's nice to hear Josh is " like " someone else.

> Physically he is very

> behind for his age. He is 7mos old and can't roll

> over, sit up. He's

> just started holding his up better.

>

> Dawn, mom to 7mos w/PMG

>

> > > HELLO TO EVERYONE

> > >

> > > My name is Heidi. I have a beautiful 16 1/2

> month

> > > old daughter, Hailey, who was diagnosed with UPP

> (

> > > Unilateral Perisylvian Polymicrogeria ) on the

> right

> > > side of her brain about a week ago. She is my

> first

> > > child, and now probably my last, but she does

> have

> > > two half brothers, Dylan- who will turn 4 in

> Dec.,

> > > and Dakota- who will turn 3 this Sat. We get the

> > > boys on weekends, so in some ways I do have 3

> kids.

> > > It is just so frustrating not knowing why Hailey

> has

> > > this or if the next child would get it also- so,

> > > unfortunately, no more kids for me.

> > > At Hailey's 9 month check-up, I told her doctor

> that

> > > I felt she was not where she should have been

> > > developmentally. He noticed that she had low

> tone in

> > > her neck and trunk area. She also kept her left

> hand

> > > fisted quite a bit. Hailey had just started

> rolling

> > > over, could not sit up, and had a hard time

> keeping

> > > her head up. Her doctor ordered an MRI which

> > > revealed that the right side of her brain was

> only

> > > about 1/3 the size it should have been. The

> > > radiologist had also noted Lissencephaly on that

> > > side. We went to a neurologist who said that it

> was

> > > not Lissencephaly, but she'd had a stroke in

> utero

> > > between 3-5 months. A second neurologist said

> the

> > > same thing and ordered genetics testing. The

> > > geneticists found nothing but showed the MRI to

> her

> > > radiologist, who also said Lissencephaly. By

> then

> > > we'd had two radiologists say yes and two

> > > neurologists say no. We sent the MRI to Dr.

>

> > > Dobyns in Chicago, who notified us that it was

> PMG.

> > > So now we search for all the information we can

> > > find.

> > > From what I have read about PMG, it seems that

> > > Hailey is at the better end of the scale. She

> has

> > > not had seizures, is not a sickly child, does

> show

> > > progress, etc. She is at about a six month level

> and

> > > has OT, PT, Feeding Therapy, Home Therapy, and

> will

> > > eventually start Speech Therapy . She does not

> have

> > > a G-tube, but does eat baby food out of a

> feeding

> > > bottle and drink milk out of a regular bottle.

> She

> > > is working on eating crackers, Cheerios, peanut

> > > butter, etc. Her feeding therapy is to teach her

> how

> > > to use all of her mouth, lip, and jaw muscles

> > > together. She has shown great improvements with

> it.

> > > At 16 months she weighs 23 lbs., so we don't

> have to

> > > worry too much about it. { She looks like a

> little

> > > cherub! } She still can not sit up for more than

> 15

> > > seconds by herself, and can only grab at things

> a

> > > little bit and only with her right hand. She has

> > > shown improvement across the board and continues

> to

> > > do so. It would be nice to know what we can look

> > > forward to, but I understand that you just never

> > > know. After hearing all of the negative things

> about

> > > PMG, it is very nice to hear the positive

> outcomes

> > > from other parents. It gives us hope. Hearing

> that

> > > have been a few adults with PMG was very

> reassuring,

> > > given that life span is an issue. Also hearing

> > > stories of children mainstream in school was

> such

> > > great news. We all want our children to have a

> > > " normal " life, and that information was

> promising.

> > > I also would like to hear from anyone who knows

> > > first hand about HBO ( Hyperbarric Oxygen )

> > > treatments. This is something I am very

> interested

> > > in, since it seems to prove very promising for

> the

> > > Cerebral Palsy aspects of PMG.

> > > Any information would be greatly appreciated, on

> > > HBO, PMG or anything else you have found useful.

> > > Thank you,

> > > Heidi

> > > Re: New Member - Jerry

>

=== message truncated ===

__________________________________________________

October 30, 2001

Hiedi,

How wonderful to hear from you. We enjoyed hearing about your daughter and

step-sons. We hope to learn more as they grow up. I am writing to you because

of your remarks about having more children.

Many people look at having a special needs child in many ways. Some feel

blessed, some challenged, others punished. You did nothing to birth a Liss

child. I am not going to tell you to look a gift horse in the mouth, or that

you are cursed, or blessed. You are none of these things. You are what YOU

make of YOUR relationship with Hailey. I don't focus on Carver's losses, or

lags, or even developmental delays. We focus on his accomplishments, his good

health, and how happy he is. It was devastating to get a diagnosis of something

less than perfect, regardless of the affliction for our son. However, we

cherish Carver for what he is, not for what we think he should have been. I

could delve into aspects of his care, and things we are doing to improve his

life. I would willingly do so, if you or anyone else is interested. But the

reason your e-mail called out to me is because of your reluctance to have more

children.

Carver is my 4th child, the first with my final hubby. Despite the uncertainty

of the fate of our future children, we refuse to be intimidated by having a Liss

child. I realize that having a Liss kid first must be very devastating, in a

sense, Carver is a first Liss child for us. We wanted to have a second child,

but worried like you do about having another special needs child, like you do.

After a little research we have learned that the chance of reoccurrence is

10-15%. This is the standard number for any parents wanting to have more

children after a Liss child. Mike and I are planning one more. We hope for the

best, but plan for the chance of a child without Liss. You see, Carver is the

perfect child. He is happy, wondrous, loving, giving, and relies on us 100% as

any 4 month old would do, even though he is almost 9 1/2 months. We hope to see

him walk and talk, but it is OK if he does not. A younger sibling that is not

afflicted may be helpful in accelerating development. Don't get me wrong, we

want another child for that sole cause. We are willing to love whatever God

gives us, just like the first 4 children.

I hope that I am making my point clear. As I read over this, it seems muddled.

I have so much that is hard to express in an e-mail. Please don't let Hailey be

the reason you don't plan for more children. You may be robbing yourself of

another wonderful experience.

Best of luck, and wishes,

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still of 10 minutes,

and Carver 8 1/2 months with BPP, the happiest little guy in the world with the

bluest eyes EVER!

Re: File - Request.txt

>

> We have a daughter 17 who has bi-lateral perisylvian. We recdently

contacted

> MUMS and one of the parents Wickman gave us this sites address.

> Our daughter is just about grown and is really doing well. When she was

> younger we didn't really have much to go on in the way of information or

> advice on her condition and just thought it would be nice to give

> encouragement to others and see if there's anything we might have missed

in

> the way of medical advice.

>

> Sincerely,

> Jerry

> White

>

October 30, 2001