Re: seizures and medication

[Guest guest]

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]

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]

I did not know about the Keppra rage. my 19 month old is on it, and so far no

rages. thank goodness.

-sent via mindwaves

>

> 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]

My son has Pulmonary Hypertension and is on diuretics (Lasix & Spironolactone)

to minimize fluid build-up in his lungs. To replenish, he is also on Sodium

Chloride and Potassium Chloride.

He has a g-tube that I give all his meds through. He has become a good eater and

hasn't used the tube for feeding for a very long time but thank goodness we have

it to give his meds through!

>

> 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]

My son has gotten most of his teeth as would a typical child but a some of them

are missing enamel. Anyone else have this issue? The dentist says I should brush

them with fluoride toothpaste regularly. I try as often as I can but most often

I just wipe them off with a wet washcloth.

I'm just too tired to fight him to get the brush in as much as I should. There

are so many things I have to do to him that upset him, I'm just picking my

battles. I'm hoping I'm not making a mistake!

>

> 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!

>

>

>

[Guest guest]

Its a fight for us too. My son had tooth decay on his baby teeth and suffered

so much before we figured out what was wrong. When the dentists looked at his

teeth they said it didn't look like it would cause so much pain. It wasn't

until we put him under anesthesia and they took an xray that they realized his

teeth were very bad. They pulled out 2 and capped 2. We are diligent now.

Some days he gives us a hard time but some days he just accepts it. I agree, it

so much work and I feel the same way some times, I also have a 2 year old that

drives me crazy! LOL.

To: polymicrogyria

From: me@...

Date: Thu, 29 Sep 2011 05:45:24 +0000

Subject: Re: seizures and medication

My son has gotten most of his teeth as would a typical child but a some of

them are missing enamel. Anyone else have this issue? The dentist says I should

brush them with fluoride toothpaste regularly. I try as often as I can but most

often I just wipe them off with a wet washcloth.

I'm just too tired to fight him to get the brush in as much as I should. There

are so many things I have to do to him that upset him, I'm just picking my

battles. I'm hoping I'm not making a mistake!

>

> 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!

>

>

>

[Guest guest]

So what do you suggest? My girl has just turned 1 and is cutting her first tooth

with two others trying. Once they are through should I be brushing them with a

little bit of toothpaste daily?

________________________________

To: polymicrogyria

Sent: Friday, 30 September 2011 5:12 AM

Subject: RE: Re: seizures and medication

Its a fight for us too.  My son had tooth decay on his baby teeth and suffered

so much before we figured out what was wrong.  When the dentists looked at his

teeth they said it didn't look like it would cause so much pain.  It wasn't

until we put him under anesthesia and they took an xray that they realized his

teeth were very bad.  They pulled out 2 and capped 2.  We are diligent now. 

Some days he gives us a hard time but some days he just accepts it.  I agree, it

so much work and I feel the same way some times, I also have a 2 year old that

drives me crazy!  LOL.

To: polymicrogyria

From: me@...

Date: Thu, 29 Sep 2011 05:45:24 +0000

Subject: Re: seizures and medication

 

   

     

     

      My son has gotten most of his teeth as would a typical child but a some of

them are missing enamel. Anyone else have this issue? The dentist says I should

brush them with fluoride toothpaste regularly. I try as often as I can but most

often I just wipe them off with a wet washcloth.

I'm just too tired to fight him to get the brush in as much as I should. There

are so many things I have to do to him that upset him, I'm just picking my

battles. I'm hoping I'm not making a mistake!

>

> 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!

>

>

>

   

   

   

   

                         

[Guest guest]

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]

Hope it is okay that I am jumping in here, but yes, I would brush with a

little bit of toothpaste daily. Start with the childrens fluoride free kind

since she will not be able to spit out the toothpaste and they should not be

swallowing fluoride. At least this is the opinion of Callie's pediatric

dentist. If anyone has problems with their child accepting a toothbrush

into their mouth, you might have better luck with tooth wipes. Something

like this:

http://www.amazon.com/My-Dentist-Choice-Tooth-Tissues/dp/B0015R9GBG/ref=sr_1_2?s\

=hpc & ie=UTF8 & qid=1317317648 & sr=1-2

My dentist gave us a sample of a brand called Spiffies. Best of luck!

Callie's Mommy

http://calliebloggie.blogspot.com/

----- Forwarded Message -----

*From:* Kat Reid

*To:* " polymicrogyria " <polymicrogyria >

*Sent:* Thursday, September 29, 2011 1:11 PM

*Subject:* Re: Re: seizures and medication

So what do you suggest? My girl has just turned 1 and is cutting her first

tooth with two others trying. Once they are through should I be brushing

them with a little bit of toothpaste daily?

________________________________

To: polymicrogyria

Sent: Friday, 30 September 2011 5:12 AM

Subject: RE: Re: seizures and medication

Its a fight for us too. My son had tooth decay on his baby teeth and

suffered so much before we figured out what was wrong. When the dentists

looked at his teeth they said it didn't look like it would cause so much

pain. It wasn't until we put him under anesthesia and they took an xray

that they realized his teeth were very bad. They pulled out 2 and capped

2. We are diligent now. Some days he gives us a hard time but some days he

just accepts it. I agree, it so much work and I feel the same way some

times, I also have a 2 year old that drives me crazy! LOL.

To: polymicrogyria

From: me@...

Date: Thu, 29 Sep 2011 05:45:24 +0000

Subject: Re: seizures and medication

My son has gotten most of his teeth as would a typical child but a

some of them are missing enamel. Anyone else have this issue? The dentist

says I should brush them with fluoride toothpaste regularly. I try as often

as I can but most often I just wipe them off with a wet washcloth.

I'm just too tired to fight him to get the brush in as much as I should.

There are so many things I have to do to him that upset him, I'm just

picking my battles. I'm hoping I'm not making a mistake!

>

> 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!

>

>

>

[Guest guest]

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]

i would. The younger you get them used to it the better. I started as an

infant with my younger son and now he reminds me when its time to brush teeth!

To: polymicrogyria

From: cutekat@...

Date: Fri, 30 Sep 2011 06:11:01 +1300

Subject: Re: Re: seizures and medication

So what do you suggest? My girl has just turned 1 and is cutting her first

tooth with two others trying. Once they are through should I be brushing them

with a little bit of toothpaste daily?

________________________________

To: polymicrogyria

Sent: Friday, 30 September 2011 5:12 AM

Subject: RE: Re: seizures and medication

Its a fight for us too. My son had tooth decay on his baby teeth and suffered

so much before we figured out what was wrong. When the dentists looked at his

teeth they said it didn't look like it would cause so much pain. It wasn't

until we put him under anesthesia and they took an xray that they realized his

teeth were very bad. They pulled out 2 and capped 2. We are diligent now.

Some days he gives us a hard time but some days he just accepts it. I agree, it

so much work and I feel the same way some times, I also have a 2 year old that

drives me crazy! LOL.

To: polymicrogyria

From: me@...

Date: Thu, 29 Sep 2011 05:45:24 +0000

Subject: Re: seizures and medication

My son has gotten most of his teeth as would a typical child but a some of

them are missing enamel. Anyone else have this issue? The dentist says I should

brush them with fluoride toothpaste regularly. I try as often as I can but most

often I just wipe them off with a wet washcloth.

I'm just too tired to fight him to get the brush in as much as I should. There

are so many things I have to do to him that upset him, I'm just picking my

battles. I'm hoping I'm not making a mistake!

>

> 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!

>

>

>