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RE: Re: Melatonin

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How old is Jaunene? My daughter is 14,months and does not have seizures. She has

also had a 48 hr EEG and with no seizure activity.

Sent from my iPad

>

> Melatonin only helps you to fall asleep and then wears off. So my guess is

that it wouldn't help your son to sleep longer. I know a lot of parents that

have to give their kids Valum at night to get a few hours of sleep. I would try

to investigate What's waking your son. Could be seizures. Dr Dobbyns said at the

2012 convention that everyone with PMG will have seizures while sleeping. We

don't see any seizure activity with Jaunene. We asked if it would be beneficial

to set up video monitors and he said with " us " that we shouldn't worry ourselves

until we start seeing side effects from seizures. Said we are fortunate that

Jaunene isn't being affected.

>

>

> >

> > Hi, thanks for all the great info! I agree we have to do therapy every day

with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > Another question I have is about sleeping? My son is not a good sleeper to

say the least! We are awake at least 5x per night. And that is probably a decent

night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > Thanks much,

> > Candace

> > Sent from my iPad

> >

>

>

>

>

>

>

>

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I understand that seizures can develop at any age and at any time. I'm just

curious on when they started for everyone's little ones. I feel very blessed

that my daughter has not had them yet....because I'm sure she will at some

point.

Sent from my iPad

> I don't post often on this site but I just wanted to let you know what were

told. My daughter is 4 1/2 and has bilateral PMG (frontal, parietal, & tempral

regions affected) she is followed at CHOP in Philly. We were told at age 4 she

has a 75% increased risk of developing seizures, she never had a single seizure

until 2 weeks before her 4th birthday. She now has partial complex seizurez,

atonic seizures, focal seizures and nocturnal seizures. There is alsways a

chance they can develop, they did for her. Good luck!

>

>

>

> > > >

> > > > Hi, thanks for all the great info! I agree we have to do therapy every

day with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > > > Another question I have is about sleeping? My son is not a good sleeper

to say the least! We are awake at least 5x per night. And that is probably a

decent night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > > > Thanks much,

> > > > Candace

> > > > Sent from my iPad

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

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Guest guest

I also do not post often, but I wanted to let you know about my experience with

seizures. My daughter is 11 1/2 and has bilateral PMG. She and we have been

very blessed because she has not had a seizure. We are aware that she is always

at risk. So you never know.

-do you live in Philly? We are in land.

Also, does anyone know if there is an organization that provides college

scholarships to children with PMG?

To: polymicrogyria

From: schreiber678@...

Date: Sat, 14 Jul 2012 10:10:32 -0500

Subject: Re: Re: Melatonin

I understand that seizures can develop at any age and at any time. I'm

just curious on when they started for everyone's little ones. I feel very

blessed that my daughter has not had them yet....because I'm sure she will at

some point.

Sent from my iPad

> I don't post often on this site but I just wanted to let you know what were

told. My daughter is 4 1/2 and has bilateral PMG (frontal, parietal, & tempral

regions affected) she is followed at CHOP in Philly. We were told at age 4 she

has a 75% increased risk of developing seizures, she never had a single seizure

until 2 weeks before her 4th birthday. She now has partial complex seizurez,

atonic seizures, focal seizures and nocturnal seizures. There is alsways a

chance they can develop, they did for her. Good luck!

>

>

>

> > > >

> > > > Hi, thanks for all the great info! I agree we have to do therapy every

day with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > > > Another question I have is about sleeping? My son is not a good sleeper

to say the least! We are awake at least 5x per night. And that is probably a

decent night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > > > Thanks much,

> > > > Candace

> > > > Sent from my iPad

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

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Guest guest

Our son started @ 5 months. He is now 7 yrs old. PMG bilateral (mainly on left

frontal side to temporal area) It can't be surgically removed safely. He has

every type of seizure about 5-10 a day. He has VNS Therapy and is on 3 meds

that he tolerates. He has continued to show cognitive improvement despite the

continued seizures. He use to have gran mal every 3 days up to 20+ minutes

prior to VNS which he got when he was 4. His seizures now usually last from 30

seconds to 3 minutes. We go to Boston Childrens.

Sent from my Verizon Wireless BlackBerry

Re: Re: Melatonin

I understand that seizures can develop at any age and at any time. I'm just

curious on when they started for everyone's little ones. I feel very blessed

that my daughter has not had them yet....because I'm sure she will at some

point.

Sent from my iPad

> I don't post often on this site but I just wanted to let you know what were

told. My daughter is 4 1/2 and has bilateral PMG (frontal, parietal, & tempral

regions affected) she is followed at CHOP in Philly. We were told at age 4 she

has a 75% increased risk of developing seizures, she never had a single seizure

until 2 weeks before her 4th birthday. She now has partial complex seizurez,

atonic seizures, focal seizures and nocturnal seizures. There is alsways a

chance they can develop, they did for her. Good luck!

>

>

>

> > > >

> > > > Hi, thanks for all the great info! I agree we have to do therapy every

day with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > > > Another question I have is about sleeping? My son is not a good sleeper

to say the least! We are awake at least 5x per night. And that is probably a

decent night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > > > Thanks much,

> > > > Candace

> > > > Sent from my iPad

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

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Guest guest

My  son, started at 3 months.  He is now 18 years old and is controlled

with  Keppra.   Went though the trial and error years too.  Started on it

in 2002 and except for febrile seizures that are coming less and less, he is

doing great. Cognitively impaired but quite functional and we are thrilled with

how far he has come.

DON " T Ever assume because your child is not developing for long periods that he

or she has reached their limit.  They are slowed constantly by their health

issues and can move forward at any time.  Never assume they are done.  We all

learn everyday of our lives and they do too.  Just have a hard time letting us

know.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Saturday, July 14, 2012 11:10 AM

Subject: Re: Re: Melatonin

 

I understand that seizures can develop at any age and at any time. I'm just

curious on when they started for everyone's little ones. I feel very blessed

that my daughter has not had them yet....because I'm sure she will at some

point.

Sent from my iPad

On Jul 14, 2012, at 9:56 AM, " elisabeckman " <mailto:ehb%40comcast.net> wrote:

> I don't post often on this site but I just wanted to let you know what were

told. My daughter is 4 1/2 and has bilateral PMG (frontal, parietal, & tempral

regions affected) she is followed at CHOP in Philly. We were told at age 4 she

has a 75% increased risk of developing seizures, she never had a single seizure

until 2 weeks before her 4th birthday. She now has partial complex seizurez,

atonic seizures, focal seizures and nocturnal seizures. There is alsways a

chance they can develop, they did for her. Good luck!

>

>

>

> > > >

> > > > Hi, thanks for all the great info! I agree we have to do therapy every

day with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > > > Another question I have is about sleeping? My son is not a good sleeper

to say the least! We are awake at least 5x per night. And that is probably a

decent night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > > > Thanks much,

> > > > Candace

> > > > Sent from my iPad

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

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Guest guest

It took us a long time to get 's seizures under control and I feel blessed

that he sleeps now.  Just keep in mind always that it could be reflux too that

is disturbing them.  They don't sleep really deep at times then if there is

discomfort it would rouse them.  Keep trying.  Blessings to all of you.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, July 15, 2012 12:58 PM

Subject: Re: Melatonin

 

My son's neurologist had us start him on melatonin about 6 months ago to help

him fall asleep. However it does not keep him from waking up.he is eleven and

had his first grandmal seizure on his tenth birthday.after not responding well

to medicine his neurologist ordered MRI which showed he had both polymicrogyria

and PVNH. Even as infant he had trouble sleeping and the neurologist told me

that most likely he has always had seizure activity in his sleep.we see the

neurology team at CHOP. He is scheduled to go back for 3 more days next month

for another EEG sleep study

Sent from my iPad

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Communication devices are great fun for all of us.  A time of discovery. 

People are constantly amazed as well as the family that can find icons and

expressions so quickly. We often can't follow so we know which sections he found

the words.  Best of luck to you.

________________________________

To: polymicrogyria

Sent: Sunday, July 15, 2012 11:45 AM

Subject: Re: Melatonin

 

Hi ,

Jaunene is 18 yrs old!!! She was diagnosed at 6 mos with ILS/PMG and has CP and

Microcephaly secondary and EEG did show she had Myoclonic and IS seizures. We

only saw jerks when giving her the bottle and it looked like when WE start

falling asleep and sometimes jump, which stopped after putting her on

Phenobarbital. We DID see 1 seizure when she was 7 yrs old due to out growing

her dose. Neuro changed her meds to a very low MG of Depakote Sprinkles and

have not seen any seizures since. She only sees her Neuro for annual check ups

and is still on the same dose.

She really is highly intelligent, but not seen due to not being able to speak.

However, she proved to the State Evaluators that she can and comprehends the

MyTobbi Eye Gaze Communication Device and also showed she retains memory!!

Minimum requirement to pass is 12 fields with 2-4 pictures, she flew thru the

test doing 30 fields with 10 pictures. With that, the evaluators said she's

definitely at level 3, possibly level 4!!!!!! We Just got her device last

Friday and I'm so excited to get her started to see where exactly her level is

truly at. My 2 older kids said " once Jaunene starts speaking, they're gonna

have to run away from home " ! LOL

> >

> > Hi, thanks for all the great info! I agree we have to do therapy every day

with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > Another question I have is about sleeping? My son is not a good sleeper to

say the least! We are awake at least 5x per night. And that is probably a decent

night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > Thanks much,

> > Candace

> > Sent from my iPad

> >

>

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Guest guest

Did you get the report and read it?

Sent from Samsung Conquerâ„¢ 4G

wrote:

How old is Jaunene? My daughter is 14,months and does not have seizures. She has

also had a 48 hr EEG and with no seizure activity.

Sent from my iPad

>

> Melatonin only helps you to fall asleep and then wears off. So my guess is

that it wouldn't help your son to sleep longer. I know a lot of parents that

have to give their kids Valum at night to get a few hours of sleep. I would try

to investigate What's waking your son. Could be seizures. Dr Dobbyns said at the

2012 convention that everyone with PMG will have seizures while sleeping. We

don't see any seizure activity with Jaunene. We asked if it would be beneficial

to set up video monitors and he said with " us " that we shouldn't worry ourselves

until we start seeing side effects from seizures. Said we are fortunate that

Jaunene isn't being affected.

>

>

> >

> > Hi, thanks for all the great info! I agree we have to do therapy every day

with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > Another question I have is about sleeping? My son is not a good sleeper to

say the least! We are awake at least 5x per night. And that is probably a decent

night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > Thanks much,

> > Candace

> > Sent from my iPad

> >

>

>

>

>

>

>

>

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Guest guest

I have the report and her neurologist read over it with me. Along with another

seizure specialist.

Sent from my iPhone

> Did you get the report and read it?

>

> Sent from Samsung Conquerâ„¢ 4G

>

> wrote:

>

> How old is Jaunene? My daughter is 14,months and does not have seizures. She

has also had a 48 hr EEG and with no seizure activity.

>

>

>

> Sent from my iPad

>

>

>

> >

> > Melatonin only helps you to fall asleep and then wears off. So my guess is

that it wouldn't help your son to sleep longer. I know a lot of parents that

have to give their kids Valum at night to get a few hours of sleep. I would try

to investigate What's waking your son. Could be seizures. Dr Dobbyns said at the

2012 convention that everyone with PMG will have seizures while sleeping. We

don't see any seizure activity with Jaunene. We asked if it would be beneficial

to set up video monitors and he said with " us " that we shouldn't worry ourselves

until we start seeing side effects from seizures. Said we are fortunate that

Jaunene isn't being affected.

> >

> >

> > >

> > > Hi, thanks for all the great info! I agree we have to do therapy every day

with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

> > > Another question I have is about sleeping? My son is not a good sleeper to

say the least! We are awake at least 5x per night. And that is probably a decent

night? Any advice? I have heard of people using melatonin? Any one with

experience, results?

> > > Thanks much,

> > > Candace

> > > Sent from my iPad

> > >

> >

> >

> >

> >

> >

> >

> >

>

>

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Share on other sites

Guest guest

Hi, I have seen many post with CHOP in them. How many of us go to CHOP? Would

any one be interested in getting a group together to meet. I would love to meet

other families who share our lives.

To: polymicrogyria

From: ehb@...

Date: Sat, 14 Jul 2012 18:58:24 +0000

Subject: Re: Melatonin

-I live about an hour north of Philadelphia, in Bucks County. We

are at CHOP on average 4-6 times a month as well at Dupont Children's 3 times a

month. She keeps me busy as do all of our little ones! I am glad to hear that

your daughter does not have seizures. How is she otherwise? a does not eat

much by mouth, we were told she has a very weak swallow and structurally she

cannot tolerate swallowing anything thicker than a cream base consistency soup.

I thake her 3 days a week for E-stim therapy to help her swallow. We have been

at it for 1 1/2 years so far and she is starting to plateau. She has numerous

other medical issues but that would require writing a book! Where in MD do you

live? We just went to OC for our first vacation ever with a. She was

trached since birth and the trach tube came out last March and her Dr's were ok

with her going away finally! It was so amazing in OC! What a great place!

>

> > > > >

>

> > > > > Hi, thanks for all the great info! I agree we have to do therapy every

day with our kids, but I don't think I'm a replacement for the the professional

therapist. I am a nurse who works the night shift so I could be home for all my

kids. I am learning so much about this new and crazy world which is now my life.

>

> > > > > Another question I have is about sleeping? My son is not a good

sleeper to say the least! We are awake at least 5x per night. And that is

probably a decent night? Any advice? I have heard of people using melatonin? Any

one with experience, results?

>

> > > > > Thanks much,

>

> > > > > Candace

>

> > > > > Sent from my iPad

>

> > > > >

>

> > > >

>

> > > >

>

> > > >

>

> > > >

>

> > > >

>

> > > >

>

> > > >

>

> > >

>

> > >

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Share on other sites

Guest guest

I would love to get together!

Sent from my Verizon Wireless 4G LTE smartphone

Candace DeBaecke wrote:

>

>Hi, I have seen many post with CHOP in them. How many of us go to CHOP? Would

any one be interested in getting a group together to meet. I would love to meet

other families who share our lives.

> To: polymicrogyria

>From: ehb@...

>Date: Sat, 14 Jul 2012 18:58:24 +0000

>Subject: Re: Melatonin

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> -I live about an hour north of Philadelphia, in Bucks County. We

are at CHOP on average 4-6 times a month as well at Dupont Children's 3 times a

month. She keeps me busy as do all of our little ones! I am glad to hear that

your daughter does not have seizures. How is she otherwise? a does not eat

much by mouth, we were told she has a very weak swallow and structurally she

cannot tolerate swallowing anything thicker than a cream base consistency soup.

I thake her 3 days a week for E-stim therapy to help her swallow. We have been

at it for 1 1/2 years so far and she is starting to plateau. She has numerous

other medical issues but that would require writing a book! Where in MD do you

live? We just went to OC for our first vacation ever with a. She was

trached since birth and the trach tube came out last March and her Dr's were ok

with her going away finally! It was so amazing in OC! What a great place!

>

>

>

>

>

>

>

>>

>

>> > > > >

>

>>

>

>> > > > > Hi, thanks for all the great info! I agree we have to do therapy

every day with our kids, but I don't think I'm a replacement for the the

professional therapist. I am a nurse who works the night shift so I could be

home for all my kids. I am learning so much about this new and crazy world which

is now my life.

>

>>

>

>> > > > > Another question I have is about sleeping? My son is not a good

sleeper to say the least! We are awake at least 5x per night. And that is

probably a decent night? Any advice? I have heard of people using melatonin? Any

one with experience, results?

>

>>

>

>> > > > > Thanks much,

>

>>

>

>> > > > > Candace

>

>>

>

>> > > > > Sent from my iPad

>

>>

>

>> > > > >

>

>>

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>> > > >

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>> > >

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>> > >

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Share on other sites

Guest guest

Hi, we live in central jersey. we could pick a place between.

To: polymicrogyria

From: michellem81@...

Date: Wed, 18 Jul 2012 15:03:17 +0000

Subject: Re: Melatonin

My son goes to CHOP.we live in south jersey about 20 minutes from the main

CHOP hospital.i would be interested in meeting up if not too far

>

> >

>

> > > > > >

>

> >

>

> > > > > > Hi, thanks for all the great info! I agree we have to do therapy

every day with our kids, but I don't think I'm a replacement for the the

professional therapist. I am a nurse who works the night shift so I could be

home for all my kids. I am learning so much about this new and crazy world which

is now my life.

>

> >

>

> > > > > > Another question I have is about sleeping? My son is not a good

sleeper to say the least! We are awake at least 5x per night. And that is

probably a decent night? Any advice? I have heard of people using melatonin? Any

one with experience, results?

>

> >

>

> > > > > > Thanks much,

>

> >

>

> > > > > > Candace

>

> >

>

> > > > > > Sent from my iPad

>

> >

>

> > > > > >

>

> >

>

> > > > >

>

> >

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> > > > >

>

> >

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> > > > >

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> >

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> > > > >

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> >

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> > > > >

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> >

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> > > > >

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> >

>

> > > > >

>

> >

>

> > > >

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> >

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> > > >

Link to comment
Share on other sites

Guest guest

Hi, where do you live. We live in central jersey.

To: polymicrogyria

From: ehb@...

Date: Tue, 17 Jul 2012 19:55:34 -0400

Subject: RE: Re: Melatonin

I would love to get together!

Sent from my Verizon Wireless 4G LTE smartphone

Candace DeBaecke wrote:

>

>Hi, I have seen many post with CHOP in them. How many of us go to CHOP? Would

any one be interested in getting a group together to meet. I would love to meet

other families who share our lives.

> To: polymicrogyria

>From: ehb@...

>Date: Sat, 14 Jul 2012 18:58:24 +0000

>Subject: Re: Melatonin

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

>

>

> -I live about an hour north of Philadelphia, in Bucks County. We

are at CHOP on average 4-6 times a month as well at Dupont Children's 3 times a

month. She keeps me busy as do all of our little ones! I am glad to hear that

your daughter does not have seizures. How is she otherwise? a does not eat

much by mouth, we were told she has a very weak swallow and structurally she

cannot tolerate swallowing anything thicker than a cream base consistency soup.

I thake her 3 days a week for E-stim therapy to help her swallow. We have been

at it for 1 1/2 years so far and she is starting to plateau. She has numerous

other medical issues but that would require writing a book! Where in MD do you

live? We just went to OC for our first vacation ever with a. She was

trached since birth and the trach tube came out last March and her Dr's were ok

with her going away finally! It was so amazing in OC! What a great place!

>

>

>

>

>

>

>

>>

>

>> > > > >

>

>>

>

>> > > > > Hi, thanks for all the great info! I agree we have to do therapy

every day with our kids, but I don't think I'm a replacement for the the

professional therapist. I am a nurse who works the night shift so I could be

home for all my kids. I am learning so much about this new and crazy world which

is now my life.

>

>>

>

>> > > > > Another question I have is about sleeping? My son is not a good

sleeper to say the least! We are awake at least 5x per night. And that is

probably a decent night? Any advice? I have heard of people using melatonin? Any

one with experience, results?

>

>>

>

>> > > > > Thanks much,

>

>>

>

>> > > > > Candace

>

>>

>

>> > > > > Sent from my iPad

>

>>

>

>> > > > >

>

>>

>

>> > > >

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>> > > >

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>> > > >

>

>>

>

>> > >

>

>>

>

>> > >

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Guest guest

We live in Bucks County, Doylestown. Not to far from central Jersey. We travel

to CHOP about once a week, sometimes more! We keep adding doctors and

unfortunately none have clinic on the same days or if they do I am never able to

schedule appts on the same days! I find myself there 2-3 times in one week! We

are so fortunate to have CHOP so close to home though.

Sent from my Verizon Wireless 4G LTE smartphone

Candace DeBaecke wrote:

>

>Hi, where do you live. We live in central jersey.

> To: polymicrogyria

>From: ehb@...

>Date: Tue, 17 Jul 2012 19:55:34 -0400

>Subject: RE: Re: Melatonin

>

>

>

>

>

>

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>

>

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> I would love to get together!

>

>

>

>Sent from my Verizon Wireless 4G LTE smartphone

>

>

>

>Candace DeBaecke wrote:

>

>

>

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>>Hi, I have seen many post with CHOP in them. How many of us go to CHOP? Would

any one be interested in getting a group together to meet. I would love to meet

other families who share our lives.

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>> To: polymicrogyria

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>>From: ehb@...

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>>Date: Sat, 14 Jul 2012 18:58:24 +0000

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>>Subject: Re: Melatonin

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>> -I live about an hour north of Philadelphia, in Bucks County.

We are at CHOP on average 4-6 times a month as well at Dupont Children's 3 times

a month. She keeps me busy as do all of our little ones! I am glad to hear that

your daughter does not have seizures. How is she otherwise? a does not eat

much by mouth, we were told she has a very weak swallow and structurally she

cannot tolerate swallowing anything thicker than a cream base consistency soup.

I thake her 3 days a week for E-stim therapy to help her swallow. We have been

at it for 1 1/2 years so far and she is starting to plateau. She has numerous

other medical issues but that would require writing a book! Where in MD do you

live? We just went to OC for our first vacation ever with a. She was

trached since birth and the trach tube came out last March and her Dr's were ok

with her going away finally! It was so amazing in OC! What a great place!

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>>> > > > > Hi, thanks for all the great info! I agree we have to do therapy

every day with our kids, but I don't think I'm a replacement for the the

professional therapist. I am a nurse who works the night shift so I could be

home for all my kids. I am learning so much about this new and crazy world which

is now my life.

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>>> > > > > Another question I have is about sleeping? My son is not a good

sleeper to say the least! We are awake at least 5x per night. And that is

probably a decent night? Any advice? I have heard of people using melatonin? Any

one with experience, results?

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>>> > > > > Candace

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>>> > > > > Sent from my iPad

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