new to the group and need advice

[Guest guest]

Hi all, I'm , I have a 7 yr old son (or Mojo).

At the age of 4 yrs he was diagnosed with Neuronal Migration

Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??

I have a few reasons for posting today, as i usually just read what

everyone else posts. but to be honest i feel i need a unbiased

opinion.

Mojo's Seizures are very problematic, he is fitting everyday,

Grand mal,Petit mal, absences, drop attacks and sleep seizures! to

name but a few! We use Buccal Midazolam as a rescue med but are

having to double the dose to bring him out of a major

seizure....Anyway!

my reason for posting is, I was wondering if anybody has any

knowledge about VNS? accourding to the doctors this seems to be the

only thing left to try, i've tried looking it up on the net, and to

be honest i really didn't like what i was reading! my son can not

express his feeling or tell me where he is hurting ect so i am

worried about the side effects, when he can not tell me if there is a

problem.

Have any other of our special kiddos with limited communication had

this done? and how did they get on?

i also saw a recent post about one of our kiddos having screaming

fits! we to have had these and found out that it WAS seizure related,

mojo's were brought on by the lights passing the window of the car.

ie. if we were on the motorway. he also does'nt know how to control

his temper or emotions so if he laughs he cries ect, which can be

quiet amusing sometimes! (you have to laugh) but also because he

suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to?

i hope this is helpful.

Thanks in advance for taking the time (out of what a know to be a

hetic Life) to help me.

Hugs To All our Angels

Mum To , 7yrs, Diffuse Pachygyria/Polymicrogyria/G-

tube/Reflux/uncontrolled seizures, and the light of my

life.

[Guest guest]

I don't know about having both kinds of syndromes.

My son has had his VNS for about two years now. It does work.

He also experiences seizures if he laughs to hard. At breakfast time he may have

some and fall into his bowl of cereal.

He has been on all kinds of meds, but for now he is taking Lyrica, lamictal, and

trileptal.

It might be worth looking into the VNS for various reasons.

Less meds.

Have you given Diastat to your son for lengthy seizures? We've only given it

once to my son.

Take care

To: polymicrogyria@...: lisagold2@...: Sun, 4 Nov 2007

11:11:49 +0000Subject: new to the group and need advice

Hi all, I'm , I have a 7 yr old son (or Mojo).At the age of 4 yrs he

was diagnosed with Neuronal Migration Disorder of diffuse Pachygyria type. But

after a recent meeting with Dr Pilz she believes he has Polymicrogyria or both!

is that possible??I have a few reasons for posting today, as i usually just read

what everyone else posts. but to be honest i feel i need a unbiased

opinion.Mojo's Seizures are very problematic, he is fitting everyday, Grand

mal,Petit mal, absences, drop attacks and sleep seizures! to name but a few! We

use Buccal Midazolam as a rescue med but are having to double the dose to bring

him out of a major seizure....Anyway! my reason for posting is, I was wondering

if anybody has any knowledge about VNS? accourding to the doctors this seems to

be the only thing left to try, i've tried looking it up on the net, and to be

honest i really didn't like what i was reading! my son can not express his

feeling or tell me where he is hurting ect so i am worried about the side

effects, when he can not tell me if there is a problem. Have any other of our

special kiddos with limited communication had this done? and how did they get

on? i also saw a recent post about one of our kiddos having screaming fits! we

to have had these and found out that it WAS seizure related, mojo's were brought

on by the lights passing the window of the car. ie. if we were on the motorway.

he also does'nt know how to control his temper or emotions so if he laughs he

cries ect, which can be quiet amusing sometimes! (you have to laugh) but also

because he suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to? i hope

this is helpful.Thanks in advance for taking the time (out of what a know to be

a hetic Life) to help me.Hugs To All our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life.

_________________________________________________________________

Peek-a-boo FREE Tricks & Treats for You!

http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

hi thanks for the reply,

also has seizures in the morning and wears his breakfast more than he

eats it!(bless). Not sure about the diastat! is that the same as rectal

diazapine? (sorry for the poor spelling) if it is, then yes! we have tried it

and the side effects were so bad he was spending more time in hospital with slow

respirations and heart rate, than at home! we also found that the rec diaz

stayed in his system longer so he was more off his feet, although he was still

having seizures! very odd.

how has your son managed with the side effects? can he tell you if they are

troublesome?

we're on the 10 th lot of different meds and combinations, but still no joy. our

problem is that Mojo's seizures are sleep triggered! so it's not something that

can be avoided.

Many thanks again

and

To: polymicrogyria@...: pattylockard@...: Sun, 4 Nov

2007 16:31:24 +0000Subject: RE: new to the group and need

advice

I don't know about having both kinds of syndromes.My son has had his VNS for

about two years now. It does work.He also experiences seizures if he laughs to

hard. At breakfast time he may have some and fall into his bowl of cereal.He has

been on all kinds of meds, but for now he is taking Lyrica, lamictal, and

trileptal.It might be worth looking into the VNS for various reasons.Less meds.

Have you given Diastat to your son for lengthy seizures? We've only given it

once to my son.Take careTo: polymicrogyria@...:

lisagold2@...: Sun, 4 Nov 2007 11:11:49 +0000Subject:

new to the group and need adviceHi all, I'm , I have a 7 yr old son

(or Mojo).At the age of 4 yrs he was diagnosed with Neuronal Migration Disorder

of diffuse Pachygyria type. But after a recent meeting with Dr Pilz she believes

he has Polymicrogyria or both! is that possible??I have a few reasons for

posting today, as i usually just read what everyone else posts. but to be honest

i feel i need a unbiased opinion.Mojo's Seizures are very problematic, he is

fitting everyday, Grand mal,Petit mal, absences, drop attacks and sleep

seizures! to name but a few! We use Buccal Midazolam as a rescue med but are

having to double the dose to bring him out of a major seizure....Anyway! my

reason for posting is, I was wondering if anybody has any knowledge about VNS?

accourding to the doctors this seems to be the only thing left to try, i've

tried looking it up on the net, and to be honest i really didn't like what i was

reading! my son can not express his feeling or tell me where he is hurting ect

so i am worried about the side effects, when he can not tell me if there is a

problem. Have any other of our special kiddos with limited communication had

this done? and how did they get on? i also saw a recent post about one of our

kiddos having screaming fits! we to have had these and found out that it WAS

seizure related, mojo's were brought on by the lights passing the window of the

car. ie. if we were on the motorway. he also does'nt know how to control his

temper or emotions so if he laughs he cries ect, which can be quiet amusing

sometimes! (you have to laugh) but also because he suffed so badly from

constipation that he cried all the time but couldn't tell us he was in Pain. so

may be thats worth looking in to? i hope this is helpful.Thanks in advance for

taking the time (out of what a know to be a hetic Life) to help me.Hugs To All

our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. __________________________________________________________Peek-a-boo

FREE Tricks & Treats for

You!http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us[Non-text portions of this

message have been removed]

_________________________________________________________________

100’s of Music vouchers to be won with MSN Music

https://www.musicmashup.co.uk

[Guest guest]

,

Yes it is disapene(sp). We've only used that med once. My son,

Wesley, couldn't sleep after getting the med, that was many years ago. He was

eight yrs. old. He' now sixteen.

He has pmg Congenital Bilateral Perisylvian fissure syndrome, due neuronal

migration problems.

He is not verbal, but can say a few words. He is mobile. He had an SDR(selective

dorsal rhizotomy) to lessen the spasticity.

He'll have the hamstring and possibly the heel cord lengthening next summer.

I hope things work out for Mojo.

Patty

_________________________________________________________________

Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare!

http://onecare.live.com/standard/en-us/purchase/trial.aspx?s_cid=wl_hotmailnews

[Guest guest]

, I assume as you have met Dr Pilz, you live in the UK. We live in the

Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we have

not met her. Was you meeting constructive? I had often wondered about trying to

get to see Dr Pilz.

Dom, father to Chloe, Cerebral palsy with four limb disorder secondary to

diffuse bilateral polymicrogyria, Severe development delay, epilepsy with

generalised and partial seizures, G

Tube, two ops on each hip. age 6

new to the group and need advice

Hi all, I'm , I have a 7 yr old son (or Mojo).

At the age of 4 yrs he was diagnosed with Neuronal Migration

Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??

I have a few reasons for posting today, as i usually just read what

everyone else posts. but to be honest i feel i need a unbiased

opinion.

Mojo's Seizures are very problematic, he is fitting everyday,

Grand mal,Petit mal, absences, drop attacks and sleep seizures! to

name but a few! We use Buccal Midazolam as a rescue med but are

having to double the dose to bring him out of a major

seizure....Anyway!

my reason for posting is, I was wondering if anybody has any

knowledge about VNS? accourding to the doctors this seems to be the

only thing left to try, i've tried looking it up on the net, and to

be honest i really didn't like what i was reading! my son can not

express his feeling or tell me where he is hurting ect so i am

worried about the side effects, when he can not tell me if there is a

problem.

Have any other of our special kiddos with limited communication had

this done? and how did they get on?

i also saw a recent post about one of our kiddos having screaming

fits! we to have had these and found out that it WAS seizure related,

mojo's were brought on by the lights passing the window of the car.

ie. if we were on the motorway. he also does'nt know how to control

his temper or emotions so if he laughs he cries ect, which can be

quiet amusing sometimes! (you have to laugh) but also because he

suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to?

i hope this is helpful.

Thanks in advance for taking the time (out of what a know to be a

hetic Life) to help me.

Hugs To All our Angels

Mum To , 7yrs, Diffuse Pachygyria/Polymicrogyria/G-

tube/Reflux/uncontrolled seizures, and the light of my

life.

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.15.22/1111 - Release Date: 05/11/2007

04:36

[Guest guest]

Hi,

I belong to another Yahoo Group that is called Childhood Epilepsy (CHE), and

several of the children have had VNS surgery with varied results. If I recall

correctly though, it seems like many of them had good results.

You may want to check it out as it is a very friendly group filled with a ton

of parents who have a lot of wisdom and experiece between them.

Chloe B wrote:

, I assume as you have met Dr Pilz, you live in the UK. We live in

the Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we

have not met her. Was you meeting constructive? I had often wondered about

trying to get to see Dr Pilz.

Dom, father to Chloe, Cerebral palsy with four limb disorder secondary to

diffuse bilateral polymicrogyria, Severe development delay, epilepsy with

generalised and partial seizures, G

Tube, two ops on each hip. age 6

new to the group and need advice

Hi all, I'm , I have a 7 yr old son (or Mojo).

At the age of 4 yrs he was diagnosed with Neuronal Migration

Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??

I have a few reasons for posting today, as i usually just read what

everyone else posts. but to be honest i feel i need a unbiased

opinion.

Mojo's Seizures are very problematic, he is fitting everyday,

Grand mal,Petit mal, absences, drop attacks and sleep seizures! to

name but a few! We use Buccal Midazolam as a rescue med but are

having to double the dose to bring him out of a major

seizure....Anyway!

my reason for posting is, I was wondering if anybody has any

knowledge about VNS? accourding to the doctors this seems to be the

only thing left to try, i've tried looking it up on the net, and to

be honest i really didn't like what i was reading! my son can not

express his feeling or tell me where he is hurting ect so i am

worried about the side effects, when he can not tell me if there is a

problem.

Have any other of our special kiddos with limited communication had

this done? and how did they get on?

i also saw a recent post about one of our kiddos having screaming

fits! we to have had these and found out that it WAS seizure related,

mojo's were brought on by the lights passing the window of the car.

ie. if we were on the motorway. he also does'nt know how to control

his temper or emotions so if he laughs he cries ect, which can be

quiet amusing sometimes! (you have to laugh) but also because he

suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to?

i hope this is helpful.

Thanks in advance for taking the time (out of what a know to be a

hetic Life) to help me.

Hugs To All our Angels

Mum To , 7yrs, Diffuse Pachygyria/Polymicrogyria/G-

tube/Reflux/uncontrolled seizures, and the light of my

life.

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.15.22/1111 - Release Date: 05/11/2007

04:36

[Guest guest]

Hi Dom and Chloe,

Yes i have met Dr Pilz, she is a lovely women with a vast amount of knowledge

in polymicrogyria and associated disorders. i found out about her off another

web site and contacted her myself as i didn't seem to be getting the answers i

was looking for from my own ped. but you will have to request a appointment, and

to be totally honest even if it was a waste of time it is worth at try!!

I didn't really get the definate answers i was looking for, but! i do feel i

know and understand s condition more now.

I am now awaiting a referral to a specialist in Italy (sorry can't remember his

name) he has agreed to look at s MRI scans as he also specialisies in this

condition and in epilepsy causes by this horrible horrible condition! (sorry got

abit carried away then)lol and all his work is done on a research basis! Bonus!

Where abouts in the midlands are you? We live in Staffordshire.

Take Care and it's great to hear from you and

To: polymicrogyria@...: b_chlo@...: Mon, 5 Nov 2007

20:15:17 +0000Subject: Re: new to the group and need advice

, I assume as you have met Dr Pilz, you live in the UK. We live in the

Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we have

not met her. Was you meeting constructive? I had often wondered about trying to

get to see Dr Pilz.Dom, father to Chloe, Cerebral palsy with four limb disorder

secondary to diffuse bilateral polymicrogyria, Severe development delay,

epilepsy with generalised and partial seizures, G Tube, two ops on each hip. age

6

new to the group and need adviceHi all, I'm , I have a 7 yr

old son (or Mojo).At the age of 4 yrs he was diagnosed with Neuronal

Migration Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??I have a

few reasons for posting today, as i usually just read what everyone else posts.

but to be honest i feel i need a unbiased opinion.Mojo's Seizures are very

problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop attacks

and sleep seizures! to name but a few! We use Buccal Midazolam as a rescue med

but are having to double the dose to bring him out of a major seizure....Anyway!

my reason for posting is, I was wondering if anybody has any knowledge about

VNS? accourding to the doctors this seems to be the only thing left to try, i've

tried looking it up on the net, and to be honest i really didn't like what i was

reading! my son can not express his feeling or tell me where he is hurting ect

so i am worried about the side effects, when he can not tell me if there is a

problem. Have any other of our special kiddos with limited communication had

this done? and how did they get on? i also saw a recent post about one of our

kiddos having screaming fits! we to have had these and found out that it WAS

seizure related, mojo's were brought on by the lights passing the window of the

car. ie. if we were on the motorway. he also does'nt know how to control his

temper or emotions so if he laughs he cries ect, which can be quiet amusing

sometimes! (you have to laugh) but also because he suffed so badly from

constipation that he cried all the time but couldn't tell us he was in Pain. so

may be thats worth looking in to? i hope this is helpful.Thanks in advance for

taking the time (out of what a know to be a hetic Life) to help me.Hugs To All

our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been removed]

_________________________________________________________________

Celeb spotting – Play CelebMashup and win cool prizes

https://www.celebmashup.com

[Guest guest]

Hi ,

Thanks for the info i will be sure to check it out. i'm so confused about it i

don't really know what way to turn so every little helps.

Many Thanks again and

To: polymicrogyria@...: horneelisa@...: Mon, 5 Nov

2007 12:28:04 -0800Subject: Re: new to the group and need

advice

Hi, I belong to another Yahoo Group that is called Childhood Epilepsy (CHE), and

several of the children have had VNS surgery with varied results. If I recall

correctly though, it seems like many of them had good results. You may want to

check it out as it is a very friendly group filled with a ton of parents who

have a lot of wisdom and experiece between them. Chloe B

wrote:, I assume as you have met Dr Pilz, you live in

the UK. We live in the Midlands. My daughters scans were sent to and reviewed by

Dr Pilz, but we have not met her. Was you meeting constructive? I had often

wondered about trying to get to see Dr Pilz.Dom, father to Chloe, Cerebral palsy

with four limb disorder secondary to diffuse bilateral polymicrogyria, Severe

development delay, epilepsy with generalised and partial seizures, G Tube, two

ops on each hip. age 6

new to the group and need adviceHi all, I'm , I have a 7 yr

old son (or Mojo).At the age of 4 yrs he was diagnosed with Neuronal

Migration Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??I have a

few reasons for posting today, as i usually just read what everyone else posts.

but to be honest i feel i need a unbiased opinion.Mojo's Seizures are very

problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop attacks

and sleep seizures! to name but a few! We use Buccal Midazolam as a rescue med

but are having to double the dose to bring him out of a major seizure....Anyway!

my reason for posting is, I was wondering if anybody has any knowledge about

VNS? accourding to the doctors this seems to be the only thing left to try, i've

tried looking it up on the net, and to be honest i really didn't like what i was

reading! my son can not express his feeling or tell me where he is hurting ect

so i am worried about the side effects, when he can not tell me if there is a

problem. Have any other of our special kiddos with limited communication had

this done? and how did they get on? i also saw a recent post about one of our

kiddos having screaming fits! we to have had these and found out that it WAS

seizure related, mojo's were brought on by the lights passing the window of the

car. ie. if we were on the motorway. he also does'nt know how to control his

temper or emotions so if he laughs he cries ect, which can be quiet amusing

sometimes! (you have to laugh) but also because he suffed so badly from

constipation that he cried all the time but couldn't tell us he was in Pain. so

may be thats worth looking in to? i hope this is helpful.Thanks in advance for

taking the time (out of what a know to be a hetic Life) to help me.Hugs To All

our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been

removed]__________________________________________________

[Guest guest]

,

Is it Dr. Guerrini at the University of Pisa? If it is, I hear he's the best

when it comes to treating epilepsy caused by malformations. Dr. Dobyns was

going to be sending my Step Daughter's information on to him when we saw him in

March. We're still waiting to hear what he has to say, but it was great to know

Guerrini would be reviewing her case. You can't do better then him if he's the

one you will be seeing.

Penny

lisa goldstraw wrote:

Hi Dom and Chloe,

Yes i have met Dr Pilz, she is a lovely women with a vast amount of knowledge in

polymicrogyria and associated disorders. i found out about her off another web

site and contacted her myself as i didn't seem to be getting the answers i was

looking for from my own ped. but you will have to request a appointment, and to

be totally honest even if it was a waste of time it is worth at try!!

I didn't really get the definate answers i was looking for, but! i do feel i

know and understand s condition more now.

I am now awaiting a referral to a specialist in Italy (sorry can't remember his

name) he has agreed to look at s MRI scans as he also specialisies in this

condition and in epilepsy causes by this horrible horrible condition! (sorry got

abit carried away then)lol and all his work is done on a research basis! Bonus!

Where abouts in the midlands are you? We live in Staffordshire.

Take Care and it's great to hear from you and

To: polymicrogyria@...: b_chlo@...: Mon, 5 Nov 2007

20:15:17 +0000Subject: Re: new to the group and need advice

, I assume as you have met Dr Pilz, you live in the UK. We live in the

Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we have

not met her. Was you meeting constructive? I had often wondered about trying to

get to see Dr Pilz.Dom, father to Chloe, Cerebral palsy with four limb disorder

secondary to diffuse bilateral polymicrogyria, Severe development delay,

epilepsy with generalised and partial seizures, G Tube, two ops on each hip. age

6

new to the group and need adviceHi all, I'm , I have a 7 yr

old son (or Mojo).At the age of 4 yrs he was diagnosed with Neuronal

Migration Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??I have a

few reasons for posting today, as i usually just read what everyone else

posts. but to be honest i feel i need a unbiased opinion.Mojo's Seizures are

very problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop

attacks and sleep seizures! to name but a few! We use Buccal Midazolam as a

rescue med but are having to double the dose to bring him out of a major

seizure....Anyway! my reason for posting is, I was wondering if anybody has any

knowledge about VNS? accourding to the doctors this seems to be the only thing

left to try, i've tried looking it up on the net, and to be honest i really

didn't like what i was reading! my son can not express his feeling or tell me

where he is hurting ect so i am worried about the side effects, when he can not

tell me if there is a problem. Have any other of our special kiddos with limited

communication had this done? and how did they get on? i also saw a recent post

about one of our kiddos having screaming fits! we to have had these and found

out that it WAS seizure related, mojo's were brought

on by the lights passing the window of the car. ie. if we were on the motorway.

he also does'nt know how to control his temper or emotions so if he laughs he

cries ect, which can be quiet amusing sometimes! (you have to laugh) but also

because he suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to? i hope

this is helpful.Thanks in advance for taking the time (out of what a know to be

a hetic Life) to help me.Hugs To All our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been removed]

_________________________________________________________________

Celeb spotting – Play CelebMashup and win cool prizes

https://www.celebmashup.com

[Guest guest]

Just an information for all: Prof. Renzo GUERRINI moved from Pisa University

to Firenze (Florence).

He is now director at the Hospital A. Meyer (University of Florence) and

his new –mail is: r.guerrini@...

His fax number is 0039 055 566.23.29.

I think he is always very busy because it’s difficult to have answers from

him ...

Kind regards from Tessa’s father.

Penny Rubalcaba

<centworthyyahoo (DOT)

com> To

Sent by: polymicrogyria

polymicrogyria@yah cc

oogroups.com

Subject

RE: new to the

05/11/2007 23:40 group and need advice

Please respond to

polymicrogyria@yah

oogroups.com

,

Is it Dr. Guerrini at the University of Pisa? If it is, I hear he's the best

when it comes to treating epilepsy caused by malformations. Dr. Dobyns was

going to be sending my Step Daughter's information on to him when we saw him

in March. We're still waiting to hear what he has to say, but it was great to

know Guerrini would be reviewing her case. You can't do better then him if

he's the one you will be seeing.

Penny

lisa goldstraw wrote:

Hi Dom and Chloe,

Yes i have met Dr Pilz, she is a lovely women with a vast amount of knowledge

in polymicrogyria and associated disorders. i found out about her off another

web site and contacted her myself as i didn't seem to be getting the answers

i was looking for from my own ped. but you will have to request a

appointment, and to be totally honest even if it was a waste of time it is

worth at try!!

I didn't really get the definate answers i was looking for, but! i do feel i

know and understand s condition more now.

I am now awaiting a referral to a specialist in Italy (sorry can't remember

his name) he has agreed to look at s MRI scans as he also specialisies

in this condition and in epilepsy causes by this horrible horrible condition!

(sorry got abit carried away then)lol and all his work is done on a research

basis! Bonus!

Where abouts in the midlands are you? We live in Staffordshire.

Take Care and it's great to hear from you and

To: polymicrogyria@...: b_chlo@...: Mon, 5 Nov

2007 20:15:17 +0000Subject: Re: new to the group and need

advice

, I assume as you have met Dr Pilz, you live in the UK. We live in the

Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we

have not met her. Was you meeting constructive? I had often wondered about

trying to get to see Dr Pilz.Dom, father to Chloe, Cerebral palsy with four

limb disorder secondary to diffuse bilateral polymicrogyria, Severe

development delay, epilepsy with generalised and partial seizures, G Tube,

two ops on each hip. age 6 new to the group and need adviceHi all, I'm ,

I have a 7 yr old son (or Mojo).At the age of 4 yrs he was diagnosed

with Neuronal Migration Disorder of diffuse Pachygyria type. But after a

recent meeting with Dr Pilz she believes he has Polymicrogyria or both! is

that possible??I have a few reasons for posting today, as i usually just read

what everyone else

posts. but to be honest i feel i need a unbiased opinion.Mojo's Seizures are

very problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop

attacks and sleep seizures! to name but a few! We use Buccal Midazolam as a

rescue med but are having to double the dose to bring him out of a major

seizure....Anyway! my reason for posting is, I was wondering if anybody has

any knowledge about VNS? accourding to the doctors this seems to be the only

thing left to try, i've tried looking it up on the net, and to be honest i

really didn't like what i was reading! my son can not express his feeling or

tell me where he is hurting ect so i am worried about the side effects, when

he can not tell me if there is a problem. Have any other of our special

kiddos with limited communication had this done? and how did they get on? i

also saw a recent post about one of our kiddos having screaming fits! we to

have had these and found out that it WAS seizure related, mojo's were brought

on by the lights passing the window of the car. ie. if we were on the

motorway. he also does'nt know how to control his temper or emotions so if he

laughs he cries ect, which can be quiet amusing sometimes! (you have to

laugh) but also because he suffed so badly from constipation that he cried

all the time but couldn't tell us he was in Pain. so may be thats worth

looking in to? i hope this is helpful.Thanks in advance for taking the time

(out of what a know to be a hetic Life) to help me.Hugs To All our Angels

Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light

of my life. ----------------------------------------------------------No

virus found in this incoming message.Checked by AVG Free Edition. Version:

7.5.503 / Virus Database: 269.15.22/1111 - Release Date: 05/11/2007

04:36

[Guest guest]

Hi, hanks for the info, I may well try to see her. I am right she is in

Wales?

We are in Leicester.

Dom, Chloe & family

new to the group and need adviceHi all, I'm

, I have a 7 yr old son (or Mojo).At the age of 4 yrs he was

diagnosed with Neuronal Migration Disorder of diffuse Pachygyria type. But

after a recent meeting with Dr Pilz she believes he has Polymicrogyria or

both! is that possible??I have a few reasons for posting today, as i usually

just read what everyone else posts. but to be honest i feel i need a

unbiased opinion.Mojo's Seizures are very problematic, he is fitting

everyday, Grand mal,Petit mal, absences, drop attacks and sleep seizures! to

name but a few! We use Buccal Midazolam as a rescue med but are having to

double the dose to bring him out of a major seizure....Anyway! my reason for

posting is, I was wondering if anybody has any knowledge about VNS?

accourding to the doctors this seems to be the only thing left to try, i've

tried looking it up on the net, and to be honest i really didn't like what i

was reading! my son can not express his feeling or tell me where he is

hurting ect so i am worried about the side effects, when he can not tell me

if there is a problem. Have any other of our special kiddos with limited

communication had this done? and how did they get on? i also saw a recent

post about one of our kiddos having screaming fits! we to have had these and

found out that it WAS seizure related, mojo's were brought on by the lights

passing the window of the car. ie. if we were on the motorway. he also

does'nt know how to control his temper or emotions so if he laughs he cries

ect, which can be quiet amusing sometimes! (you have to laugh) but also

because he suffed so badly from constipation that he cried all the time but

couldn't tell us he was in Pain. so may be thats worth looking in to? i hope

this is helpful.Thanks in advance for taking the time (out of what a know to

be a hetic Life) to help me.Hugs To All our Angels Mum To , 7yrs,

Diffuse Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and

the light of my

life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503

/ Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been removed]

_________________________________________________________________

Celeb spotting - Play CelebMashup and win cool prizes

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[Guest guest]

Hi Penny,

Yes!! that's the one! lol i'm glad to hear he's so highly thought of by Dr

Dobyns, who from what i've read so far seems to be one of the best also! i hope

you get the information and help you need. keep in touch and let me know if you

have any news.

I made contact with him myself and asked him to review and he has

agreed, so that's great! i'm just waiting for 's MRI films to be put on

disc so i can send them to him, (it's like waiting for paint to dry!!)but we

will get there eventually, and hopefully it will be worth it.

Take Care and Hugs to all

and

To: polymicrogyria@...: centworthy@...: Mon, 5 Nov

2007 14:40:35 -0800Subject: RE: new to the group and need

advice

,Is it Dr. Guerrini at the University of Pisa? If it is, I hear he's the

best when it comes to treating epilepsy caused by malformations. Dr. Dobyns was

going to be sending my Step Daughter's information on to him when we saw him in

March. We're still waiting to hear what he has to say, but it was great to know

Guerrini would be reviewing her case. You can't do better then him if he's the

one you will be seeing.Pennylisa goldstraw wrote:Hi Dom and

Chloe,Yes i have met Dr Pilz, she is a lovely women with a vast amount of

knowledge in polymicrogyria and associated disorders. i found out about her off

another web site and contacted her myself as i didn't seem to be getting the

answers i was looking for from my own ped. but you will have to request a

appointment, and to be totally honest even if it was a waste of time it is worth

at try!! I didn't really get the definate answers i was looking for, but! i do

feel i know and understand s condition more now. I am now awaiting a

referral to a specialist in Italy (sorry can't remember his name) he has agreed

to look at s MRI scans as he also specialisies in this condition and in

epilepsy causes by this horrible horrible condition! (sorry got abit carried

away then)lol and all his work is done on a research basis! Bonus! Where abouts

in the midlands are you? We live in Staffordshire.Take Care and it's great to

hear from you and To: polymicrogyria@...:

b_chlo@...: Mon, 5 Nov 2007 20:15:17 +0000Subject: Re:

new to the group and need advice, I assume as you have met

Dr Pilz, you live in the UK. We live in the Midlands. My daughters scans were

sent to and reviewed by Dr Pilz, but we have not met her. Was you meeting

constructive? I had often wondered about trying to get to see Dr Pilz.Dom,

father to Chloe, Cerebral palsy with four limb disorder secondary to diffuse

bilateral polymicrogyria, Severe development delay, epilepsy with generalised

and partial seizures, G Tube, two ops on each hip. age 6 new to the group and need

adviceHi all, I'm , I have a 7 yr old son (or Mojo).At the age of 4

yrs he was diagnosed with Neuronal Migration Disorder of diffuse Pachygyria

type. But after a recent meeting with Dr Pilz she believes he has Polymicrogyria

or both! is that possible??I have a few reasons for posting today, as i usually

just read what everyone elseposts. but to be honest i feel i need a unbiased

opinion.Mojo's Seizures are very problematic, he is fitting everyday, Grand

mal,Petit mal, absences, drop attacks and sleep seizures! to name but a few! We

use Buccal Midazolam as a rescue med but are having to double the dose to bring

him out of a major seizure....Anyway! my reason for posting is, I was wondering

if anybody has any knowledge about VNS? accourding to the doctors this seems to

be the only thing left to try, i've tried looking it up on the net, and to be

honest i really didn't like what i was reading! my son can not express his

feeling or tell me where he is hurting ect so i am worried about the side

effects, when he can not tell me if there is a problem. Have any other of our

special kiddos with limited communication had this done? and how did they get

on? i also saw a recent post about one of our kiddos having screaming fits! we

to have had these and found out that it WAS seizure related, mojo's were

broughton by the lights passing the window of the car. ie. if we were on the

motorway. he also does'nt know how to control his temper or emotions so if he

laughs he cries ect, which can be quiet amusing sometimes! (you have to laugh)

but also because he suffed so badly from constipation that he cried all the time

but couldn't tell us he was in Pain. so may be thats worth looking in to? i hope

this is helpful.Thanks in advance for taking the time (out of what a know to be

a hetic Life) to help me.Hugs To All our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been removed]

__________________________________________________________Celeb spotting – Play

CelebMashup and win cool prizeshttps://www.celebmashup.com[Non-text portions of

this message have been removed]

[Guest guest]

Hi Dom Your very welcome! yes Dr Pilz is in wales. i have pasted her info for

you and anyone else who would like it.

I hope this is helpful.

Consultant Clinical Geneticist Institute of Medical Genetics University Hospital

of Wales Cardiff CF14 4XW Tel: +44 (0)29 20743922 Fax: +44 (0)29 20743863

email:daniela.pilz@...

good luck and keep in touch.

and

To: polymicrogyria@...: b_chlo@...: Tue, 6 Nov 2007

21:23:56 +0000Subject: Re: new to the group and need advice

Hi, hanks for the info, I may well try to see her. I am right she is in Wales?We

are in Leicester.Dom, Chloe & family

new to the group and need adviceHi all, I'm , I have a 7 yr

old son (or Mojo).At the age of 4 yrs he was diagnosed with Neuronal

Migration Disorder of diffuse Pachygyria type. But after a recent meeting with

Dr Pilz she believes he has Polymicrogyria or both! is that possible??I have a

few reasons for posting today, as i usually just read what everyone else posts.

but to be honest i feel i need a unbiased opinion.Mojo's Seizures are very

problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop attacks

and sleep seizures! to name but a few! We use Buccal Midazolam as a rescue med

but are having to double the dose to bring him out of a major seizure....Anyway!

my reason for posting is, I was wondering if anybody has any knowledge about

VNS? accourding to the doctors this seems to be the only thing left to try, i've

tried looking it up on the net, and to be honest i really didn't like what i was

reading! my son can not express his feeling or tell me where he is hurting ect

so i am worried about the side effects, when he can not tell me if there is a

problem. Have any other of our special kiddos with limited communication had

this done? and how did they get on? i also saw a recent post about one of our

kiddos having screaming fits! we to have had these and found out that it WAS

seizure related, mojo's were brought on by the lights passing the window of the

car. ie. if we were on the motorway. he also does'nt know how to control his

temper or emotions so if he laughs he cries ect, which can be quiet amusing

sometimes! (you have to laugh) but also because he suffed so badly from

constipation that he cried all the time but couldn't tell us he was in Pain. so

may be thats worth looking in to? i hope this is helpful.Thanks in advance for

taking the time (out of what a know to be a hetic Life) to help me.Hugs To All

our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date: 05/11/2007 04:36[Non-text

portions of this message have been

removed]__________________________________________________________Celeb spotting

- Play CelebMashup and win cool prizeshttps://www.celebmashup.com[Non-text

portions of this message have been removed]

[Guest guest]

,

Glad to hear it! Oh yeah, Dobyns not only thinks highly of him, if you read

some of the his publications that are online you'll notice he and Guerrini have

co-authored some together. I'm not sure how extensively they have worked

together but it appears they have (really this is such a unique condition I

think they all try to work together, Thank God for our kids they do).

And THANKS ERIN for the information about a possible upcoming conference. My

husband and I would definately want to attend with Marz when it comes up!

Penny

lisa goldstraw wrote:

Hi Penny,

Yes!! that's the one! lol i'm glad to hear he's so highly thought of by Dr

Dobyns, who from what i've read so far seems to be one of the best also! i hope

you get the information and help you need. keep in touch and let me know if you

have any news.

I made contact with him myself and asked him to review and he has agreed,

so that's great! i'm just waiting for 's MRI films to be put on disc so i

can send them to him, (it's like waiting for paint to dry!!)but we will get

there eventually, and hopefully it will be worth it.

Take Care and Hugs to all

and

To: polymicrogyria@...: centworthy@...: Mon, 5 Nov

2007 14:40:35 -0800Subject: RE: new to the group and need

advice

,Is it Dr. Guerrini at the University of Pisa? If it is, I hear he's the

best when it comes to treating epilepsy caused by malformations. Dr. Dobyns was

going to be sending my Step Daughter's information on to him when we saw him in

March. We're still waiting to hear what he has to say, but it was great to know

Guerrini would be reviewing her case. You can't do better then him if he's the

one you will be seeing.Pennylisa goldstraw

wrote:Hi Dom and Chloe,Yes i have met Dr Pilz, she is a lovely women with a vast

amount of knowledge in polymicrogyria and associated disorders. i found out

about her off another web site and contacted her myself as i didn't seem to be

getting the answers i was looking for from my own ped. but you will have to

request a appointment, and to be totally honest even if it was a waste of time

it is worth at try!! I didn't really get the definate answers i was looking for,

but! i do feel i know and understand s condition more now. I am now

awaiting a referral to a specialist in Italy (sorry can't remember his name) he

has agreed to look at s MRI scans as he also specialisies in this

condition and in epilepsy causes by this horrible horrible condition! (sorry got

abit carried away then)lol and all his work is done on a research basis! Bonus!

Where abouts in the midlands are you? We live in Staffordshire.Take Care and

it's great to hear from you and To:

polymicrogyria@...: b_chlo@...: Mon, 5 Nov 2007

20:15:17 +0000Subject: Re: new to the group and need

advice, I assume as you have met Dr Pilz, you live in the UK. We live in the

Midlands. My daughters scans were sent to and reviewed by Dr Pilz, but we have

not met her. Was you meeting constructive? I had often wondered about trying to

get to see Dr Pilz.Dom, father to Chloe, Cerebral palsy with four limb disorder

secondary to diffuse bilateral polymicrogyria, Severe development delay,

epilepsy with generalised and partial seizures, G Tube, two ops on each hip. age

6

new to the group and need adviceHi all, I'm , I have a 7 yr

old son (or Mojo).At the age of 4 yrs he was diagnosed with Neuronal

Migration Disorder of diffuse Pachygyria type. But after a recent meeting

with Dr Pilz she believes he has Polymicrogyria or both! is that possible??I

have a few reasons for posting today, as i usually just read what everyone

elseposts. but to be honest i feel i need a unbiased opinion.Mojo's Seizures are

very problematic, he is fitting everyday, Grand mal,Petit mal, absences, drop

attacks and sleep seizures! to name but a few! We use Buccal Midazolam as a

rescue med but are having to double the dose to bring him out of a major

seizure....Anyway! my reason for posting is, I was wondering if anybody has any

knowledge about VNS? accourding to the doctors this seems to be the only thing

left to try, i've tried looking it up on the net, and to be honest i really

didn't like what i was reading! my son can not express his feeling or tell me

where he is hurting ect so i am worried about the side effects, when he can not

tell me if there is a problem. Have any other of our special kiddos with limited

communication had this done? and how did they get on?

i also saw a recent post about one of our kiddos having screaming fits! we to

have had these and found out that it WAS seizure related, mojo's were broughton

by the lights passing the window of the car. ie. if we were on the motorway. he

also does'nt know how to control his temper or emotions so if he laughs he cries

ect, which can be quiet amusing sometimes! (you have to laugh) but also because

he suffed so badly from constipation that he cried all the time but couldn't

tell us he was in Pain. so may be thats worth looking in to? i hope this is

helpful.Thanks in advance for taking the time (out of what a know to be a hetic

Life) to help me.Hugs To All our Angels Mum To , 7yrs, Diffuse

Pachygyria/Polymicrogyria/G-tube/Reflux/uncontrolled seizures, and the light of

my life. ----------------------------------------------------------No virus

found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 /

Virus Database: 269.15.22/1111 - Release Date:

05/11/2007 04:36