Re: seizures and medication

[Guest guest]

she has been on keppra for a while and hasnt had the keppra rage at least i dont

think so .. she occasionally gets mad and might kick someone but she doesnt seam

to be overly aggressive or anything ... They had told me with the meds she is on

that she doesn't need the blood work done .  hmmmmm maybe I should be fighting

that ..  

thank you

Roxanne

________________________________

To: polymicrogyria

Sent: Wednesday, September 21, 2011 10:12 AM

Subject: Re: seizures and medication

 

Hi, my daughter weighs 50 lbs and is on 275 of lomictal every morning. She has a

hard time sleeping, so the neuro has us give it to her in the morning. Make sure

to get your child's kidney values done regularly to be sure that the kidneys

aren't unusually stressed having to clear out the meds. Also, there can be some

behavioral side effects with Keppra ( " Keppra rage " ). Have you seen anything?

Good luck!!

Thea

Re: seizures and medication

It will be great to get a second opinion from another Neurologist on the meds.

Josh is on 5ml Triliptol at night and a zero-sugar/grain diet. He has has had

only 1 major seizure since then the Triliptol and diet, and it was when he had a

104 fever. The Triliptol makes him sleepy for sure. Hang in there! -

Sent from my iPad

On Sep 20, 2011, at 7:21 PM, Roxanne Bartlett

wrote:

> Hello Everyone

>

> So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

> is having

>

> multiple

> small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

> keppra and trileptal and I was told if your on seizure meds you wouldnt

> have a normal EEG .. well in addition to the keppra and trileptol she

> is now on lamictal ... It stresses me out that she is on so many

> medications. I am wanting them to wean her off of one of her old

> medications because I feel that the new one is helping, but the doctor

> seams reluctant to do so. Even though she is functioning ok she does get

sleepy and sometimes I wonder if her medication is causing her to be more spacy

or if it is seizures . When she was younger before the meds she was able to talk

and interact more.. I am going to go get a

> second opinion just to make me feel better i guess.. but I thought Id

> ask you all if your kids are on this amount of medication.. just

> wondering if its normal to be on this much medicine

>

> she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

> afternoon and 300mg trileptal 1 and 1/2 in the morning and 2 at night

> and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now st least (she

> takes pills)

> any input would be helpful

>

> thanks :)Roxanne

>

>

[Guest guest]

Roxanne, Nisha is almost 5 like 43 lbs on Keppra 3ml am and pm. Neuro said you

dose it 20 to 45 mg per kilo then maxed out. We maxed out Trileptal and weaned

off once Keppra was up to min dose range. Believe me I weaned slow the neuro

laughed at me but I hate seizures. I agree with you second opinion and wean at

least the first one. Nisha is on vit b6 50 mg day per neuro too I think this

alone is giving her some higher tolerance from what I googled. I also give

electrolye fluids daily and if she does not get them she wakes up with

nightmares. I am learning her triggers better and her patterns. My next drug

will be Lamictal I was warned of the plan after Keppra is maxed.

Diane

seizures and medication

Hello Everyone

    So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

is having

multiple

small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

keppra and trileptal and I was told if your on seizure meds you wouldnt

have a normal EEG ..  well in addition to the keppra and trileptol she

is now on lamictal ... It stresses me out that she is on so many

medications. I am wanting them to wean her off of one of her old

medications because I feel that the new one is helping, but the doctor

seams reluctant to do so.  Even though she is functioning ok she does get sleepy

and sometimes I wonder if her medication is causing her to be more spacy or if

it is seizures . When she was younger before the meds she was able to talk and

interact more.. I am going to go get a

second opinion just to make me feel better i guess.. but I thought Id

ask you all if your kids are on this amount of medication.. just

wondering if its normal to be on this much medicine

she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

afternoon  and 300mg trileptal 1 and 1/2 in the morning and 2 at night

and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now  st least   (she

takes pills)

any input would be helpful

thanks :)Roxanne

[Guest guest]

Hi Diane

I am interested in your comment about the Vit B6 you are giving your daughter..

what benefits does this give her?  I am wanting to put Siera on a Vitamin of

some kind to build her immunity, she is currently sick alot with viruals and is

also teething, both which are triggering breakthrough seizures. She has just

turned 1. she is on 3 seizure meds.

any advice is much appreicated.

Thanks

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thursday, 22 September 2011 4:52 PM

Subject: RE: seizures and medication

Roxanne,  Nisha is almost 5 like 43 lbs on Keppra 3ml am and pm. Neuro said you

dose it 20 to 45 mg per kilo then maxed out. We maxed out Trileptal and weaned

off once Keppra was up to min dose range. Believe me I weaned slow the neuro

laughed at me but I hate seizures. I agree with you second opinion and wean at

least the first one. Nisha is on vit b6 50 mg day per neuro too I think this

alone is giving her some higher tolerance from what I googled. I also give

electrolye fluids daily and if she does not get them she wakes up with

nightmares. I am learning her triggers better and her patterns. My next drug

will be Lamictal I was warned of the plan after Keppra is maxed.

Diane

seizures and medication

Hello Everyone

    So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

is having

multiple

small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

keppra and trileptal and I was told if your on seizure meds you wouldnt

have a normal EEG ..  well in addition to the keppra and trileptol she

is now on lamictal ... It stresses me out that she is on so many

medications. I am wanting them to wean her off of one of her old

medications because I feel that the new one is helping, but the doctor

seams reluctant to do so.  Even though she is functioning ok she does get sleepy

and sometimes I wonder if her medication is causing her to be more spacy or if

it is seizures . When she was younger before the meds she was able to talk and

interact more.. I am going to go get a

second opinion just to make me feel better i guess.. but I thought Id

ask you all if your kids are on this amount of medication.. just

wondering if its normal to be on this much medicine

she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

afternoon  and 300mg trileptal 1 and 1/2 in the morning and 2 at night

and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now  st least   (she

takes pills)

any input would be helpful

thanks :)Roxanne

[Guest guest]

I was wondering what kind of electrolytes you give your child as my

granddaughter needs electrolytes every day also (she gets enemas almost daily)

and we buy Pedialyteand the generic brand. It gets quite expensive when you are

giving it everyday. Is there an alternative? Also wondering why your child

needs electrolytes daily also?

Boise (Grandma to Mara, age 10, Micro, BPNH, etc., etc. etc.)

[Guest guest]

Do pmg kids tend to teeth later? Sorry I'm off topic. Just noticed that a lot of

your babies are older and teething. My son is 10 months old and still hasn't any

teeth thought maybe the two were connected. Thanks!

“I am learning all the time. The tombstone will be my diploma.â€

— Eartha Kitt

> Hi Diane

>

> I am interested in your comment about the Vit B6 you are giving your

daughter.. what benefits does this give her? I am wanting to put Siera on a

Vitamin of some kind to build her immunity, she is currently sick alot with

viruals and is also teething, both which are triggering breakthrough seizures.

She has just turned 1. she is on 3 seizure meds.

>

> any advice is much appreicated.

> Thanks

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 22 September 2011 4:52 PM

> Subject: RE: seizures and medication

>

> Roxanne, Nisha is almost 5 like 43 lbs on Keppra 3ml am and pm. Neuro said

you dose it 20 to 45 mg per kilo then maxed out. We maxed out Trileptal and

weaned off once Keppra was up to min dose range. Believe me I weaned slow the

neuro laughed at me but I hate seizures. I agree with you second opinion and

wean at least the first one. Nisha is on vit b6 50 mg day per neuro too I think

this alone is giving her some higher tolerance from what I googled. I also give

electrolye fluids daily and if she does not get them she wakes up with

nightmares. I am learning her triggers better and her patterns. My next drug

will be Lamictal I was warned of the plan after Keppra is maxed.

> Diane

> seizures and medication

>

> Hello Everyone

>

> So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

> is having

>

> multiple

> small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

> keppra and trileptal and I was told if your on seizure meds you wouldnt

> have a normal EEG .. well in addition to the keppra and trileptol she

> is now on lamictal ... It stresses me out that she is on so many

> medications. I am wanting them to wean her off of one of her old

> medications because I feel that the new one is helping, but the doctor

> seams reluctant to do so. Even though she is functioning ok she does get

sleepy and sometimes I wonder if her medication is causing her to be more spacy

or if it is seizures . When she was younger before the meds she was able to talk

and interact more.. I am going to go get a

> second opinion just to make me feel better i guess.. but I thought Id

> ask you all if your kids are on this amount of medication.. just

> wondering if its normal to be on this much medicine

>

> she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

> afternoon and 300mg trileptal 1 and 1/2 in the morning and 2 at night

> and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now st least (she

> takes pills)

> any input would be helpful

>

> thanks :)Roxanne

>

>

[Guest guest]

Kat, Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

Don't know about everybody's, but mine certainly did (and is!)

Thea, mom to Leah, 8

seizures and medication

>

> Hello Everyone

>

> So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

> is having

>

> multiple

> small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

> keppra and trileptal and I was told if your on seizure meds you wouldnt

> have a normal EEG .. well in addition to the keppra and trileptol she

> is now on lamictal ... It stresses me out that she is on so many

> medications. I am wanting them to wean her off of one of her old

> medications because I feel that the new one is helping, but the doctor

> seams reluctant to do so. Even though she is functioning ok she does get

sleepy and sometimes I wonder if her medication is causing her to be more spacy

or if it is seizures . When she was younger before the meds she was able to talk

and interact more.. I am going to go get a

> second opinion just to make me feel better i guess.. but I thought Id

> ask you all if your kids are on this amount of medication.. just

> wondering if its normal to be on this much medicine

>

> she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

> afternoon and 300mg trileptal 1 and 1/2 in the morning and 2 at night

> and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now st least (she

> takes pills)

> any input would be helpful

>

> thanks :)Roxanne

>

>

[Guest guest]

My girl just had her first birthday and up until then no sign of teeth, this

week she has just started to cut her first tooth but it is still a way from

coming through. Our neuro doc said PMG babies can teeth late in her experience

and can also take after one of the parents. In my case I didn't cut my first

tooth till about the same age, so she wasn't concerned.

Hope this helps.

Cheers

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Friday, 23 September 2011 12:58 AM

Subject: Re: seizures and medication

 

Do pmg kids tend to teeth later? Sorry I'm off topic. Just noticed that a lot of

your babies are older and teething. My son is 10 months old and still hasn't any

teeth thought maybe the two were connected. Thanks!

“I am learning all the time. The tombstone will be my diploma.â€

— Eartha Kitt

> Hi Diane

>

> I am interested in your comment about the Vit B6 you are giving your

daughter.. what benefits does this give her? I am wanting to put Siera on a

Vitamin of some kind to build her immunity, she is currently sick alot with

viruals and is also teething, both which are triggering breakthrough seizures.

She has just turned 1. she is on 3 seizure meds.

>

> any advice is much appreicated.

> Thanks

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 22 September 2011 4:52 PM

> Subject: RE: seizures and medication

>

> Roxanne, Nisha is almost 5 like 43 lbs on Keppra 3ml am and pm. Neuro said

you dose it 20 to 45 mg per kilo then maxed out. We maxed out Trileptal and

weaned off once Keppra was up to min dose range. Believe me I weaned slow the

neuro laughed at me but I hate seizures. I agree with you second opinion and

wean at least the first one. Nisha is on vit b6 50 mg day per neuro too I think

this alone is giving her some higher tolerance from what I googled. I also give

electrolye fluids daily and if she does not get them she wakes up with

nightmares. I am learning her triggers better and her patterns. My next drug

will be Lamictal I was warned of the plan after Keppra is maxed.

> Diane

> seizures and medication

>

> Hello Everyone

>

> So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

> is having

>

> multiple

> small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

> keppra and trileptal and I was told if your on seizure meds you wouldnt

> have a normal EEG .. well in addition to the keppra and trileptol she

> is now on lamictal ... It stresses me out that she is on so many

> medications. I am wanting them to wean her off of one of her old

> medications because I feel that the new one is helping, but the doctor

> seams reluctant to do so. Even though she is functioning ok she does get

sleepy and sometimes I wonder if her medication is causing her to be more spacy

or if it is seizures . When she was younger before the meds she was able to talk

and interact more.. I am going to go get a

> second opinion just to make me feel better i guess.. but I thought Id

> ask you all if your kids are on this amount of medication.. just

> wondering if its normal to be on this much medicine

>

> she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

> afternoon and 300mg trileptal 1 and 1/2 in the morning and 2 at night

> and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now st least (she

> takes pills)

> any input would be helpful

>

> thanks :)Roxanne

>

>

[Guest guest]

Hi Diane

Yes we looked at the Keto diet, but it wasn't funded in our area and they are

underway at the moment sorting all that, also the formula they had wasn't

suitable for under 2, Siera has just turned 1. The neuro said last week that

once she is 2 it will def be an option and they should have the funding and the

support sorted by then. So I am hoping things will fall into place for that

later on. I will ask the neuro about the vit B6. Thanks heaps.

Kat

________________________________

To: polymicrogyria

Sent: Friday, 23 September 2011 3:40 AM

Subject: RE: seizures and medication

 

Kat, Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

My son TJ will be 2 in early November. He didn't get any teeth until he was

over 1. I was very worried and made a dentist appt. for him and of course his

top two came in just prior to our appt. He got his bottom two about 5 months

later. And just this month the poor kid had a virus and cut another top,

another bottom and 2 top molars all in one week while being sick My son is

g-tube fed. He only spoon feeds for the stimulation rather than the nutrition.

I think that he was late because he didn't have the gum stimulation since he

never bit down on anything. I posted this same question twice when I was

concerned and never got any feedback from members so I am not sure if it is a

PMG thing or not that he was late.

>

> > Hi Diane

> >

> > I am interested in your comment about the Vit B6 you are giving your

daughter.. what benefits does this give her? I am wanting to put Siera on a

Vitamin of some kind to build her immunity, she is currently sick alot with

viruals and is also teething, both which are triggering breakthrough seizures.

She has just turned 1. she is on 3 seizure meds.

> >

> > any advice is much appreicated.

> > Thanks

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 22 September 2011 4:52 PM

> > Subject: RE: seizures and medication

> >

> > Roxanne, Nisha is almost 5 like 43 lbs on Keppra 3ml am and pm. Neuro said

you dose it 20 to 45 mg per kilo then maxed out. We maxed out Trileptal and

weaned off once Keppra was up to min dose range. Believe me I weaned slow the

neuro laughed at me but I hate seizures. I agree with you second opinion and

wean at least the first one. Nisha is on vit b6 50 mg day per neuro too I think

this alone is giving her some higher tolerance from what I googled. I also give

electrolye fluids daily and if she does not get them she wakes up with

nightmares. I am learning her triggers better and her patterns. My next drug

will be Lamictal I was warned of the plan after Keppra is maxed.

> > Diane

> > seizures and medication

> >

> > Hello Everyone

> >

> > So my daughter recently had another EEG because the neurologist saw her

space out for a second , and now he believes from the results that she

> > is having

> >

> > multiple

> > small seizures everyday in addition to her having on average about 3 big

seizures every 3 months or so.. She was already on maxed out doses of

> > keppra and trileptal and I was told if your on seizure meds you wouldnt

> > have a normal EEG .. well in addition to the keppra and trileptol she

> > is now on lamictal ... It stresses me out that she is on so many

> > medications. I am wanting them to wean her off of one of her old

> > medications because I feel that the new one is helping, but the doctor

> > seams reluctant to do so. Even though she is functioning ok she does get

sleepy and sometimes I wonder if her medication is causing her to be more spacy

or if it is seizures . When she was younger before the meds she was able to talk

and interact more.. I am going to go get a

> > second opinion just to make me feel better i guess.. but I thought Id

> > ask you all if your kids are on this amount of medication.. just

> > wondering if its normal to be on this much medicine

> >

> > she is 5 years old and she takes 500mg of keppra 2 in the morning 3 in the

> > afternoon and 300mg trileptal 1 and 1/2 in the morning and 2 at night

> > and now she takes 25mg lamictal 1 in the morning and 1 at night this one she

just started so its still lower doses for now st least (she

> > takes pills)

> > any input would be helpful

> >

> > thanks :)Roxanne

> >

> >

[Guest guest]

Kat,

 

I decided to give my son B6 because I heard it was good for the

neurotransmitters.  I didn't discuss it with our neuro, just our

pediatrician.  The doctor told me that since it is a water based vitamin it was

safe to give to my son.  Coincidence or not my son's seizures stopped for about

a month after taking B6.  I've learned on another support group online that B6

is actually a front line treatment for some seizures in Japan.  Also some

children have B6 deficiencies and need the extra vitamin.  You can ask your

doctor about testing for that. We give our son a pill and he takes it fine. 

Good luck!

 

Stacey

http://lifeonmysterylane.blogspot.com/

To: polymicrogyria

Sent: Thursday, September 22, 2011 8:40 AM

Subject: RE: seizures and medication

 

Kat, Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

with the vitamin B6 your body will only absorb as much as it needs and flush out

the rest

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thursday, September 22, 2011 5:09 PM

Subject: Re: seizures and medication

 

Kat,

 

I decided to give my son B6 because I heard it was good for the

neurotransmitters.  I didn't discuss it with our neuro, just our

pediatrician.  The doctor told me that since it is a water based vitamin it was

safe to give to my son.  Coincidence or not my son's seizures stopped for about

a month after taking B6.  I've learned on another support group online that B6

is actually a front line treatment for some seizures in Japan.  Also some

children have B6 deficiencies and need the extra vitamin.  You can ask your

doctor about testing for that. We give our son a pill and he takes it fine. 

Good luck!

 

Stacey

http://lifeonmysterylane.blogspot.com/

To: polymicrogyria

Sent: Thursday, September 22, 2011 8:40 AM

Subject: RE: seizures and medication

 

Kat, Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

I am so pleased for you that he doesn't have any problems. Isn't it weird how

things turn out. I bled with my first pregnancy until 21 weeks and I didn't

think Siera would make it, maybe now knowing she has PMG it could of been my

bodies way of telling me something was wrong, but she was strong and she stuck

in there anyway. She is a beautiful little girl and I adore her, she tries very

hard.

Thank you for sharing your story with me. I will keep my fingers crossed and try

not to worry about the next baby as hard as that is, but alot of it is out of my

hands, all I can do is look after myself and hope for the best.

thanks

Kat

________________________________

To: polymicrogyria

Sent: Saturday, 1 October 2011 1:30 AM

Subject: RE: seizures and medication

You're welcome!  I hate to jinx it but no he doesn't have any problems.  He

talks very well for his age and is very coordinated.  He is wild and has some

quirks like mommy lol but other than that no problems.  The weird thing is my

first pregnancy was so easy and normal and with my second I bled so I really

freaked out.  Good luck to you and try not to worry.

To: polymicrogyria

From: cutekat@...

Date: Fri, 30 Sep 2011 18:58:29 +1300

Subject: Re: seizures and medication

 

   

     

     

      Thanks for your reply. We have had testing done and they don't know why

Siera has PMG either. I agree its going to be hard having a second one, but I

want her to have a sibling for sure. I have good support from my partner and my

Mum so am hoping it will be ok. I'm def abit scared of the whole process, we are

going to have MRI on the next baby but they said its never going to be 100%.  So

your 2 1/2 year old has no problems at all?

Thanks

Kat

________________________________

To: polymicrogyria

Sent: Friday, 30 September 2011 8:11 AM

Subject: RE: seizures and medication

we had another baby and he's fine.  He's 2 1/2 now.  At the time we thought my

older son had di syndrome, we tested the pregnancy for that.  We had no

idea he also had PMG.  I'm glad I didn't know during my pregnancy.  No one knows

why it happened in the first pregnancy..  I will say this - I had no idea how

hard it was going to be taking care of a baby and my older son.  You really need

a partner that is willing to pick up the slack.

To: polymicrogyria@...

From: cutekat@...

Date: Fri, 30 Sep 2011 06:18:06 +1300

Subject: Re: seizures and medication

 

   

     

     

      Hi Diane

I have emailed the neuro about Vit B6 but still waiting to hear back. Siera is

constantly getting sick, viruals, chest infections, thrush in her mouth, I am

wanting to put her on something to build her immunity back up, so am hoping a

Vitamin will be ok.

My Fiancee and I have decided to have another baby, we are def both scared

knowing there is a risk of having another baby like Siera, however the Genetic

Doc has said he will refer us for MRI checks, so I guess that is something. Can

anyone else share pregnancy stories? Siera is our first, just turned 1 and has

bilaterial PMG, originally thought it was left sided but they are now saying

there is some question about the other side aswell.

She is doing very well though, has just turned 1, can old her head up for about

30secs now so is getting stronger, therapy is def making a difference.

Thanks for letting me share. And thank you Diane for your help.

Kat

________________________________

To: polymicrogyria

Sent: Friday, 23 September 2011 3:40 AM

Subject: RE: seizures and medication

 

Kat,  Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

HI,

I have heard estimates as low as 4% chance of reoccurance, and as high as 25%.

The only " sign " I had when I was pregnant that something was going on was that I

had a dual vessel umbilical cord (instead of a tri vessel one, which apparently

is typical). No one in my doc's office knew to correlate that to various birth

defects, though. They noticed it in the monthly ultrasounds, but that was it.

Otherwise, I had a healthy pregnancy.

Good luck!

Thea in NY

RE: seizures and medication

Kat, Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane

[Guest guest]

Thanks Diane I will look into the vitamins for sure. I don't think we will find

a reason either, we are trying for a baby anyway, so fingers crossed for us.

Siera is doing well, having a good break from seizures, is a happy girl again

and has just cut her 1st and 2nd tooth and she is 13mths next week. I agree

about another child being the best therapy, she is around other kids through

home based child care and since that has started she has developed alot more and

having a break from the seizures def helps.

Thanks for your advice and support, much appreicated!

4 kids! you sound like a super mum, impressive.

Regards

Kat

________________________________

To: polymicrogyria

Sent: Wednesday, 5 October 2011 3:21 PM

Subject: RE: seizures and medication

Kat, I am sure its fine to just give a multivitamin just be careful of

constipation with iron. I give Nisha 50mg twice a day of b6 liquid she is five.

What about some probiotics daily. I have 4 kids and breastfeed them all each

about a year so they never get sick. By the way we never found a reason for the

PMG and only one kid has it I believe that Dr Dobyns said it was like 5% that

the little one would get it but she is fine. Not only is she fine but they are

17 mos apart and the cheapest therapy and support for Nisha. Diane

To: polymicrogyria

From: cutekat@...

Date: Fri, 30 Sep 2011 06:18:06 +1300

Subject: Re: seizures and medication

 

   

     

     

      Hi Diane

I have emailed the neuro about Vit B6 but still waiting to hear back. Siera is

constantly getting sick, viruals, chest infections, thrush in her mouth, I am

wanting to put her on something to build her immunity back up, so am hoping a

Vitamin will be ok.

My Fiancee and I have decided to have another baby, we are def both scared

knowing there is a risk of having another baby like Siera, however the Genetic

Doc has said he will refer us for MRI checks, so I guess that is something. Can

anyone else share pregnancy stories? Siera is our first, just turned 1 and has

bilaterial PMG, originally thought it was left sided but they are now saying

there is some question about the other side aswell.

She is doing very well though, has just turned 1, can old her head up for about

30secs now so is getting stronger, therapy is def making a difference.

Thanks for letting me share. And thank you Diane for your help.

Kat

________________________________

To: polymicrogyria

Sent: Friday, 23 September 2011 3:40 AM

Subject: RE: seizures and medication

 

Kat,  Has the doctors considered Ketogenic diet? The neuro is going to have to

recommend the vit b6 dose. Nisha takes 50 mg liquid. Since the B6 she is no

longer has mouth sores, she seems more focused and no seizures but it may all be

in my head.

Diane