Re: bilateral generlized pmg

[Guest guest]

Hi Kat,

Just curious, have you try Ketogenic Diet for the Spasms?

Sent from my iPhone

> My girl has bilateral PMG, affects her right side of her body more than her

left though. Right eye vision not so great, right leg weaker than left.

>

> 18mths, still not sitting unassisted but learnt to hold her head up just

before her 1st birthday. Teeth were late too cutting her first tooth just after

first birthday. Is now rolling from back to front but is still hard work holding

her head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

>

> She has a great personality, is strong willed and knows what she wants, smiles

alot. Our biggest problem is keeping her spasms under control.

>

> Hope this helps. How old is your child?

>

> Kat

>

> ________________________________

>

> To: polymicrogyria

> Sent: Saturday, 10 March 2012 1:37 PM

> Subject: bilateral generlized pmg

>

>

>

> Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

>

> le

>

>

[Guest guest]

My son aspirated everything it only started catching up to him at 4 when he was

constantly sick. He should be listening to you. Most pmg kids or kids with cp

aspirate.

To: polymicrogyria

From: cutekat@...

Date: Sat, 10 Mar 2012 18:03:47 +1300

Subject: Re: bilateral generlized pmg

Re the aspirating, did chloe have any major signs of this? I have heard

they can have it mildly and I have asked the doc for a swallow test twice but he

said if she was doing it she would have regular chest infections. But some days

after a bottle she screams so much, she does get reflux but I am unsure if its

just that. We also have problems with drooling, and she still needs quite mushy

food. She does not grip things with her hand for every long so can not yet hold

her own bottle.

She does not walk or crawl or sit yet but am hoping oneday.... you give me hope

on that front if your girl didn't crawl till after she was 2.

How bad are her seizures?

thanks for sharing.

Kat

________________________________

To: polymicrogyria ; le

Sent: Saturday, 10 March 2012 4:36 PM

Subject: Re: bilateral generlized pmg

As u know our pmg kids are all different, however my chloes greatest

difficulties are swallowing.chewing.coughing.drooling.aspirating.use of her

hands right is worse. Walking. Few seizures. Unable to talk. Crawled at 22

months.. Walked at 3yrs 2 months

Sent from my Droid Charge on Verizon 4GLTE

- bilateral generlized pmg

Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

le

[Guest guest]

We are starting next Monday. My son is 10 months old and his seizures and

spasms are hard to control. The only thing that worked for the spasms was

prednisolone, but he has to get off. He's been on them for 4 months. We pray

that the diet will help him. Scale arrived today. Julissa

Sent from my iPad

> Hi Kat,

> Just curious, have you try Ketogenic Diet for the Spasms?

>

> Sent from my iPhone

>

>

>

> > My girl has bilateral PMG, affects her right side of her body more than her

left though. Right eye vision not so great, right leg weaker than left.

> >

> > 18mths, still not sitting unassisted but learnt to hold her head up just

before her 1st birthday. Teeth were late too cutting her first tooth just after

first birthday. Is now rolling from back to front but is still hard work holding

her head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

> >

> > She has a great personality, is strong willed and knows what she wants,

smiles alot. Our biggest problem is keeping her spasms under control.

> >

> > Hope this helps. How old is your child?

> >

> > Kat

> >

> > ________________________________

> >

> > To: polymicrogyria

> > Sent: Saturday, 10 March 2012 1:37 PM

> > Subject: bilateral generlized pmg

> >

> >

> >

> > Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

> >

> > le

> >

> >

[Guest guest]

We are in the same boat as Julissa, spasms are back at the Pred was the only

thing working but shes off that now and can't go back on it for at least

4months. Yesterday she has 12! was a bad day and sleep is a luxury at the moment

as every time she falls asleep they get her. Only good sleep she is getting is

when I give her Chloral to help her rest which I can only use once a day, this

gives us about 4hours.

We are on the waiting list for the Keto diet, its a new thing here in NZ and we

are waiting for the right person to be recruitef to run it.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, 11 March 2012 8:08 AM

Subject: Re: bilateral generlized pmg

 

Hi Kat,

Just curious, have you try Ketogenic Diet for the Spasms?

Sent from my iPhone

> My girl has bilateral PMG, affects her right side of her body more than her

left though. Right eye vision not so great, right leg weaker than left.

>

> 18mths, still not sitting unassisted but learnt to hold her head up just

before her 1st birthday. Teeth were late too cutting her first tooth just after

first birthday. Is now rolling from back to front but is still hard work holding

her head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

>

> She has a great personality, is strong willed and knows what she wants, smiles

alot. Our biggest problem is keeping her spasms under control.

>

> Hope this helps. How old is your child?

>

> Kat

>

> ________________________________

>

> To: polymicrogyria

> Sent: Saturday, 10 March 2012 1:37 PM

> Subject: bilateral generlized pmg

>

>

>

> Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

>

> le

>

>

[Guest guest]

We have the same problem. Naps are so hard! By night he is so tired from

crying (3-4 hrs) that he gives up. I have noticed that if I focus his attention

he has less spasms and seizures. Perhaps, it is my imagination! This morning I

set the iPad right in front of him to work on vision therapy, then an Einstein

video while I made breakfast, went outside,then PT and now he is sleeping. It

as been his best day this week. We'll see tonight! the tube down his throat

is not helping. When he is uncomfortable he seems to get more seizures or am I

again making up excuses? I pray and pray the diet works. Preparing for 3-5

days at the hospital. We are such regulars, we always have the same room. The

room with the EEG cameras.

Sent from my iPad

>

>

> We are in the same boat as Julissa, spasms are back at the Pred was the only

thing working but shes off that now and can't go back on it for at least

4months. Yesterday she has 12! was a bad day and sleep is a luxury at the moment

as every time she falls asleep they get her. Only good sleep she is getting is

when I give her Chloral to help her rest which I can only use once a day, this

gives us about 4hours.

>

> We are on the waiting list for the Keto diet, its a new thing here in NZ and

we are waiting for the right person to be recruitef to run it.

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Sunday, 11 March 2012 8:08 AM

> Subject: Re: bilateral generlized pmg

>

>

>

> Hi Kat,

> Just curious, have you try Ketogenic Diet for the Spasms?

>

> Sent from my iPhone

>

>

>

> > My girl has bilateral PMG, affects her right side of her body more than her

left though. Right eye vision not so great, right leg weaker than left.

> >

> > 18mths, still not sitting unassisted but learnt to hold her head up just

before her 1st birthday. Teeth were late too cutting her first tooth just after

first birthday. Is now rolling from back to front but is still hard work holding

her head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

> >

> > She has a great personality, is strong willed and knows what she wants,

smiles alot. Our biggest problem is keeping her spasms under control.

> >

> > Hope this helps. How old is your child?

> >

> > Kat

> >

> > ________________________________

> >

> > To: polymicrogyria

> > Sent: Saturday, 10 March 2012 1:37 PM

> > Subject: bilateral generlized pmg

> >

> >

> >

> > Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

> >

> > le

> >

> >

[Guest guest]

Hope the hospital stay and start to the diet goes good, Keep me posted Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, 11 March 2012 9:19 AM

Subject: Re: bilateral generlized pmg

 

We have the same problem. Naps are so hard! By night he is so tired from

crying (3-4 hrs) that he gives up. I have noticed that if I focus his attention

he has less spasms and seizures. Perhaps, it is my imagination! This morning I

set the iPad right in front of him to work on vision therapy, then an Einstein

video while I made breakfast, went outside,then PT and now he is sleeping. It

as been his best day this week. We'll see tonight! the tube down his throat

is not helping. When he is uncomfortable he seems to get more seizures or am I

again making up excuses? I pray and pray the diet works. Preparing for 3-5

days at the hospital. We are such regulars, we always have the same room. The

room with the EEG cameras.

Sent from my iPad

>

>

> We are in the same boat as Julissa, spasms are back at the Pred was the only

thing working but shes off that now and can't go back on it for at least

4months. Yesterday she has 12! was a bad day and sleep is a luxury at the moment

as every time she falls asleep they get her. Only good sleep she is getting is

when I give her Chloral to help her rest which I can only use once a day, this

gives us about 4hours.

>

> We are on the waiting list for the Keto diet, its a new thing here in NZ and

we are waiting for the right person to be recruitef to run it.

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Sunday, 11 March 2012 8:08 AM

> Subject: Re: bilateral generlized pmg

>

>

>

> Hi Kat,

> Just curious, have you try Ketogenic Diet for the Spasms?

>

> Sent from my iPhone

>

>

>

> > My girl has bilateral PMG, affects her right side of her body more than her

left though. Right eye vision not so great, right leg weaker than left.

> >

> > 18mths, still not sitting unassisted but learnt to hold her head up just

before her 1st birthday. Teeth were late too cutting her first tooth just after

first birthday. Is now rolling from back to front but is still hard work holding

her head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

> >

> > She has a great personality, is strong willed and knows what she wants,

smiles alot. Our biggest problem is keeping her spasms under control.

> >

> > Hope this helps. How old is your child?

> >

> > Kat

> >

> > ________________________________

> >

> > To: polymicrogyria

> > Sent: Saturday, 10 March 2012 1:37 PM

> > Subject: bilateral generlized pmg

> >

> >

> >

> > Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

> >

> > le

> >

> >