Re: seizures and medication

[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]

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]

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]

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