Re: NeEd SuGgEsTiOnS fast! Can you help save my grandson????

[Guest guest]

Hey Penni,

We'll be saying one for him. Could there have been a potassium drop, food

allergy. My son has been on a ventilator for three days before when he had

" seizure activity " & his breathing dropped to three breaths per min. Give him a

kiss from all the 's in Strawberry Plains Tn.

In a message dated 5/7/2008 7:57:14 P.M. Eastern Daylight Time,

helpbabykaiden@... writes:

I am sorry for not being on the boards much lately but my grandson has

come into some difficult times and we have been at the hospital. He had

a full blown cardiac arrest and was put on the vent.

GOOD NEWS: he is still with us and we were able to administer cpr with

the help of my nurse and the police officer until the ambulance arrived.

He only had three other milder episodes and he is now OFF the vent at

the hospital.

HOWEVER<

I need as much information as possible!

They have taken three seperate tests: eeg of the brain (no seizure

activity noted) ekg of the heart (same diagnosis from before that they

say is not the " cause " of the cardiac failure and they have tested him

from the pulmonary stand point.

PROBLEM: they cannot figure out what the onset was, why he stops

breathing and why his heart rate went sky high and then QUICKLY dropped.

He is on a significant increased supply of oxgyen to remain stable at

this point.

He is extremely exhausted and is fighting for his life!

I know that this " may " occur from his brain disorder but we are trying

to rule out any underlying cause PRIOR to just accepting that as the

answer.

WE ARE TRYING:

we are keeping him in the hospital on several monitors to see if the

" event " may occur during his stay to see if anything transpires that

will answer our questions.

The problem is he has had NINE of these episodes in the past three

months, this one however, almost took his life.

We has a family meeting with palliative care and they made some

suggestions on researching and even possibly finding a more qualified

neurologist more familiar with PMG and his brain disorders.

I am looking for answers or suggestions for:

A second opinion

any other known treatments or medications

If this has happened to anyone else and what they did

If anyone knows what the underlying cause may be that we may be

overlooking.

THANKS SO VERY MUCH!

I am open to any suggestions that I can brain storm with his specialist

or any referrals to great neurologist that I can transfer my grandson to

for more answers or more results.

Please email me at _helpbabykaiden@helpbabyk_

(mailto:helpbabykaiden@...)

<mailto:_helpbabykaiden@helpbabyk_ (mailto:helpbabykaiden@...) >

SO GREATLY appreciated!SO

Penni

[Non-text portions of this message have been removed]

**************Wondering what's for Dinner Tonight? Get new twists on family

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[Guest guest]

Actually he had a blood transfusion the week before and his potassium was

increased slightly. I asked if it had anything to do with the blood transfusion

and they said no because that would have shown up earlier than four days after.

I will ask them again if the potassium may have contributed.

Thanks so much

Penni

K@... wrote:

Hey Penni,

We'll be saying one for him. Could there have been a potassium drop, food

allergy. My son has been on a ventilator for three days before when he had

" seizure activity " & his breathing dropped to three breaths per min. Give him a

kiss from all the 's in Strawberry Plains Tn.

In a message dated 5/7/2008 7:57:14 P.M. Eastern Daylight Time,

helpbabykaiden@... writes:

I am sorry for not being on the boards much lately but my grandson has

come into some difficult times and we have been at the hospital. He had

a full blown cardiac arrest and was put on the vent.

GOOD NEWS: he is still with us and we were able to administer cpr with

the help of my nurse and the police officer until the ambulance arrived.

He only had three other milder episodes and he is now OFF the vent at

the hospital.

HOWEVER<

I need as much information as possible!

They have taken three seperate tests: eeg of the brain (no seizure

activity noted) ekg of the heart (same diagnosis from before that they

say is not the " cause " of the cardiac failure and they have tested him

from the pulmonary stand point.

PROBLEM: they cannot figure out what the onset was, why he stops

breathing and why his heart rate went sky high and then QUICKLY dropped.

He is on a significant increased supply of oxgyen to remain stable at

this point.

He is extremely exhausted and is fighting for his life!

I know that this " may " occur from his brain disorder but we are trying

to rule out any underlying cause PRIOR to just accepting that as the

answer.

WE ARE TRYING:

we are keeping him in the hospital on several monitors to see if the

" event " may occur during his stay to see if anything transpires that

will answer our questions.

The problem is he has had NINE of these episodes in the past three

months, this one however, almost took his life.

We has a family meeting with palliative care and they made some

suggestions on researching and even possibly finding a more qualified

neurologist more familiar with PMG and his brain disorders.

I am looking for answers or suggestions for:

A second opinion

any other known treatments or medications

If this has happened to anyone else and what they did

If anyone knows what the underlying cause may be that we may be

overlooking.

THANKS SO VERY MUCH!

I am open to any suggestions that I can brain storm with his specialist

or any referrals to great neurologist that I can transfer my grandson to

for more answers or more results.

Please email me at _helpbabykaiden@helpbabyk_

(mailto:helpbabykaiden@...)

SO GREATLY appreciated!SO

Penni

[Guest guest]

Have you gone to see Dr. Dobyns at the University of Chicago? He seems to be

the only doctor in the US that has researched PMG since 1978. We are taking

our daughter, Mikayla to see him in September.

Good luck and you are all in our prayers,

, mom to Mikayla 2 years old, PMG

On Wed, May 7, 2008 at 6:56 PM, helpbabykaiden

wrote:

>

> I am sorry for not being on the boards much lately but my grandson has

> come into some difficult times and we have been at the hospital. He had

> a full blown cardiac arrest and was put on the vent.

>

> GOOD NEWS: he is still with us and we were able to administer cpr with

> the help of my nurse and the police officer until the ambulance arrived.

> He only had three other milder episodes and he is now OFF the vent at

> the hospital.

> HOWEVER<

> I need as much information as possible!

>

> They have taken three seperate tests: eeg of the brain (no seizure

> activity noted) ekg of the heart (same diagnosis from before that they

> say is not the " cause " of the cardiac failure and they have tested him

> from the pulmonary stand point.

>

> PROBLEM: they cannot figure out what the onset was, why he stops

> breathing and why his heart rate went sky high and then QUICKLY dropped.

>

> He is on a significant increased supply of oxgyen to remain stable at

> this point.

>

> He is extremely exhausted and is fighting for his life!

>

> I know that this " may " occur from his brain disorder but we are trying

> to rule out any underlying cause PRIOR to just accepting that as the

> answer.

>

> WE ARE TRYING:

>

> we are keeping him in the hospital on several monitors to see if the

> " event " may occur during his stay to see if anything transpires that

> will answer our questions.

>

> The problem is he has had NINE of these episodes in the past three

> months, this one however, almost took his life.

>

> We has a family meeting with palliative care and they made some

> suggestions on researching and even possibly finding a more qualified

> neurologist more familiar with PMG and his brain disorders.

>

> I am looking for answers or suggestions for:

>

> A second opinion

>

> any other known treatments or medications

>

> If this has happened to anyone else and what they did

>

> If anyone knows what the underlying cause may be that we may be

> overlooking.

>

> THANKS SO VERY MUCH!

>

> I am open to any suggestions that I can brain storm with his specialist

> or any referrals to great neurologist that I can transfer my grandson to

> for more answers or more results.

>

> Please email me at helpbabykaiden@... <helpbabykaiden%40yahoo.com>

> <mailto:helpbabykaiden@... <helpbabykaiden%40yahoo.com>>

>

> SO GREATLY appreciated!!!!

>

> Penni

>

>

[Guest guest]

thanks,

do you have a contact number?

Greatly appreciated.

Penni

Lotz wrote:

Have you gone to see Dr. Dobyns at the University of Chicago? He seems to be

the only doctor in the US that has researched PMG since 1978. We are taking

our daughter, Mikayla to see him in September.

Good luck and you are all in our prayers,

, mom to Mikayla 2 years old, PMG

On Wed, May 7, 2008 at 6:56 PM, helpbabykaiden

wrote:

>

> I am sorry for not being on the boards much lately but my grandson has

> come into some difficult times and we have been at the hospital. He had

> a full blown cardiac arrest and was put on the vent.

>

> GOOD NEWS: he is still with us and we were able to administer cpr with

> the help of my nurse and the police officer until the ambulance arrived.

> He only had three other milder episodes and he is now OFF the vent at

> the hospital.

> HOWEVER<

> I need as much information as possible!

>

> They have taken three seperate tests: eeg of the brain (no seizure

> activity noted) ekg of the heart (same diagnosis from before that they

> say is not the " cause " of the cardiac failure and they have tested him

> from the pulmonary stand point.

>

> PROBLEM: they cannot figure out what the onset was, why he stops

> breathing and why his heart rate went sky high and then QUICKLY dropped.

>

> He is on a significant increased supply of oxgyen to remain stable at

> this point.

>

> He is extremely exhausted and is fighting for his life!

>

> I know that this " may " occur from his brain disorder but we are trying

> to rule out any underlying cause PRIOR to just accepting that as the

> answer.

>

> WE ARE TRYING:

>

> we are keeping him in the hospital on several monitors to see if the

> " event " may occur during his stay to see if anything transpires that

> will answer our questions.

>

> The problem is he has had NINE of these episodes in the past three

> months, this one however, almost took his life.

>

> We has a family meeting with palliative care and they made some

> suggestions on researching and even possibly finding a more qualified

> neurologist more familiar with PMG and his brain disorders.

>

> I am looking for answers or suggestions for:

>

> A second opinion

>

> any other known treatments or medications

>

> If this has happened to anyone else and what they did

>

> If anyone knows what the underlying cause may be that we may be

> overlooking.

>

> THANKS SO VERY MUCH!

>

> I am open to any suggestions that I can brain storm with his specialist

> or any referrals to great neurologist that I can transfer my grandson to

> for more answers or more results.

>

> Please email me at helpbabykaiden@...

> >

>

> SO GREATLY appreciated!!!!

>

> Penni

>

>

[Guest guest]

I did not have much luck calling their office and getting a response.

Finally, Dr. Dobyns emailed me and told me to email his secretary, Ann

at mcarter1@... and she will schedule you an

appointment. Be prepared for a long wait. We scheduled Mikayla's appointment

in March and the soonest they could get her in was September. I am sure it

will be worth the wait.

Good Luck,

Let me know if you have any more questions.

On Thu, May 8, 2008 at 9:15 AM, Penni White

wrote:

> thanks,

> do you have a contact number?

> Greatly appreciated.

> Penni

>

> Lotz <.Lotz@... <.Lotz%40gmail.com>> wrote:

> Have you gone to see Dr. Dobyns at the University of Chicago? He seems to

> be

> the only doctor in the US that has researched PMG since 1978. We are taking

> our daughter, Mikayla to see him in September.

>

> Good luck and you are all in our prayers,

>

> , mom to Mikayla 2 years old, PMG

>

> On Wed, May 7, 2008 at 6:56 PM, helpbabykaiden

> wrote:

>

> >

> > I am sorry for not being on the boards much lately but my grandson has

> > come into some difficult times and we have been at the hospital. He had

> > a full blown cardiac arrest and was put on the vent.

> >

> > GOOD NEWS: he is still with us and we were able to administer cpr with

> > the help of my nurse and the police officer until the ambulance arrived.

> > He only had three other milder episodes and he is now OFF the vent at

> > the hospital.

> > HOWEVER<

> > I need as much information as possible!

> >

> > They have taken three seperate tests: eeg of the brain (no seizure

> > activity noted) ekg of the heart (same diagnosis from before that they

> > say is not the " cause " of the cardiac failure and they have tested him

> > from the pulmonary stand point.

> >

> > PROBLEM: they cannot figure out what the onset was, why he stops

> > breathing and why his heart rate went sky high and then QUICKLY dropped.

> >

> > He is on a significant increased supply of oxgyen to remain stable at

> > this point.

> >

> > He is extremely exhausted and is fighting for his life!

> >

> > I know that this " may " occur from his brain disorder but we are trying

> > to rule out any underlying cause PRIOR to just accepting that as the

> > answer.

> >

> > WE ARE TRYING:

> >

> > we are keeping him in the hospital on several monitors to see if the

> > " event " may occur during his stay to see if anything transpires that

> > will answer our questions.

> >

> > The problem is he has had NINE of these episodes in the past three

> > months, this one however, almost took his life.

> >

> > We has a family meeting with palliative care and they made some

> > suggestions on researching and even possibly finding a more qualified

> > neurologist more familiar with PMG and his brain disorders.

> >

> > I am looking for answers or suggestions for:

> >

> > A second opinion

> >

> > any other known treatments or medications

> >

> > If this has happened to anyone else and what they did

> >

> > If anyone knows what the underlying cause may be that we may be

> > overlooking.

> >

> > THANKS SO VERY MUCH!

> >

> > I am open to any suggestions that I can brain storm with his specialist

> > or any referrals to great neurologist that I can transfer my grandson to

> > for more answers or more results.

> >

> > Please email me at helpbabykaiden@... <helpbabykaiden%40yahoo.com>

> > >

> >

> > SO GREATLY appreciated!!!!

> >

> > Penni

> >

> >

[Guest guest]

thanks, at least it is a start!

Penni

Lotz wrote:

I did not have much luck calling their office and getting a response.

Finally, Dr. Dobyns emailed me and told me to email his secretary, Ann

at mcarter1@... and she will schedule you an

appointment. Be prepared for a long wait. We scheduled Mikayla's appointment

in March and the soonest they could get her in was September. I am sure it

will be worth the wait.

Good Luck,

Let me know if you have any more questions.

On Thu, May 8, 2008 at 9:15 AM, Penni White

wrote:

> thanks,

> do you have a contact number?

> Greatly appreciated.

> Penni

>

> Lotz > wrote:

> Have you gone to see Dr. Dobyns at the University of Chicago? He seems to

> be

> the only doctor in the US that has researched PMG since 1978. We are taking

> our daughter, Mikayla to see him in September.

>

> Good luck and you are all in our prayers,

>

> , mom to Mikayla 2 years old, PMG

>

> On Wed, May 7, 2008 at 6:56 PM, helpbabykaiden

> wrote:

>

> >

> > I am sorry for not being on the boards much lately but my grandson has

> > come into some difficult times and we have been at the hospital. He had

> > a full blown cardiac arrest and was put on the vent.

> >

> > GOOD NEWS: he is still with us and we were able to administer cpr with

> > the help of my nurse and the police officer until the ambulance arrived.

> > He only had three other milder episodes and he is now OFF the vent at

> > the hospital.

> > HOWEVER<

> > I need as much information as possible!

> >

> > They have taken three seperate tests: eeg of the brain (no seizure

> > activity noted) ekg of the heart (same diagnosis from before that they

> > say is not the " cause " of the cardiac failure and they have tested him

> > from the pulmonary stand point.

> >

> > PROBLEM: they cannot figure out what the onset was, why he stops

> > breathing and why his heart rate went sky high and then QUICKLY dropped.

> >

> > He is on a significant increased supply of oxgyen to remain stable at

> > this point.

> >

> > He is extremely exhausted and is fighting for his life!

> >

> > I know that this " may " occur from his brain disorder but we are trying

> > to rule out any underlying cause PRIOR to just accepting that as the

> > answer.

> >

> > WE ARE TRYING:

> >

> > we are keeping him in the hospital on several monitors to see if the

> > " event " may occur during his stay to see if anything transpires that

> > will answer our questions.

> >

> > The problem is he has had NINE of these episodes in the past three

> > months, this one however, almost took his life.

> >

> > We has a family meeting with palliative care and they made some

> > suggestions on researching and even possibly finding a more qualified

> > neurologist more familiar with PMG and his brain disorders.

> >

> > I am looking for answers or suggestions for:

> >

> > A second opinion

> >

> > any other known treatments or medications

> >

> > If this has happened to anyone else and what they did

> >

> > If anyone knows what the underlying cause may be that we may be

> > overlooking.

> >

> > THANKS SO VERY MUCH!

> >

> > I am open to any suggestions that I can brain storm with his specialist

> > or any referrals to great neurologist that I can transfer my grandson to

> > for more answers or more results.

> >

> > Please email me at helpbabykaiden@...

> > >

> >

> > SO GREATLY appreciated!!!!

> >

> > Penni

> >

> >

[Guest guest]

I don't know if this will help but I saw an episode of Mystery Diagnosis on

Discovery Health that had a case where a baby would keep going into cardiac

arrest and they couldn't figure out why. It's on again June 8th at 1PM. I don't

remember what the final diagnosis was.

-Steve

helpbabykaiden wrote:

I am sorry for not being on the boards much lately but my grandson has

come into some difficult times and we have been at the hospital. He had

a full blown cardiac arrest and was put on the vent.

GOOD NEWS: he is still with us and we were able to administer cpr with

the help of my nurse and the police officer until the ambulance arrived.

He only had three other milder episodes and he is now OFF the vent at

the hospital.

HOWEVER<

I need as much information as possible!

They have taken three seperate tests: eeg of the brain (no seizure

activity noted) ekg of the heart (same diagnosis from before that they

say is not the " cause " of the cardiac failure and they have tested him

from the pulmonary stand point.

PROBLEM: they cannot figure out what the onset was, why he stops

breathing and why his heart rate went sky high and then QUICKLY dropped.

He is on a significant increased supply of oxgyen to remain stable at

this point.

He is extremely exhausted and is fighting for his life!

I know that this " may " occur from his brain disorder but we are trying

to rule out any underlying cause PRIOR to just accepting that as the

answer.

WE ARE TRYING:

we are keeping him in the hospital on several monitors to see if the

" event " may occur during his stay to see if anything transpires that

will answer our questions.

The problem is he has had NINE of these episodes in the past three

months, this one however, almost took his life.

We has a family meeting with palliative care and they made some

suggestions on researching and even possibly finding a more qualified

neurologist more familiar with PMG and his brain disorders.

I am looking for answers or suggestions for:

A second opinion

any other known treatments or medications

If this has happened to anyone else and what they did

If anyone knows what the underlying cause may be that we may be

overlooking.

THANKS SO VERY MUCH!

I am open to any suggestions that I can brain storm with his specialist

or any referrals to great neurologist that I can transfer my grandson to

for more answers or more results.

Please email me at helpbabykaiden@...

SO GREATLY appreciated!!!!

Penni

[Guest guest]

Penni,

& nbsp;

You may want to contact Dr. Dobyns at U. of Chicago and see if he can consult

with your child's neurology. & nbsp; & nbsp; Although there is usually a wait of

many months to consult with him, he might respond quickly if he knew of your

son's situation.

& nbsp;

If you want to go this route, you can write to the group and ask for Dr. Dobyn's

contact information.

& nbsp;

Meg in PA

[Guest guest]

You could also write Dr. Harry Chugani at Children's Hopsital of Michigan.

He is very very good and knows his stuff about PMG and all forms of

seizures. If you'd like his email let me know. I highly recommend him and

even if you're not a patient of his and you send him an email, he generally

answers it with in a couple hours. You just have to keep it short and he is

very to the point in the emails. But if you see him personally he will take

his time and explain everything to you and answer all questions.

www.danielspranger.com <http://www.danielspranger.com/>

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of M Diskin

Sent: Friday, June 06, 2008 6:43 AM

To: polymicrogyria

Subject: Re: NeEd SuGgEsTiOnS fast! Can you help save my

grandson????

Penni,

& nbsp;

You may want to contact Dr. Dobyns at U. of Chicago and see if he can

consult with your child's neurology. & nbsp; & nbsp; Although there is usually a

wait of many months to consult with him, he might respond quickly if he knew

of your son's situation.

& nbsp;

If you want to go this route, you can write to the group and ask for Dr.

Dobyn's contact information.

& nbsp;

Meg in PA