Re: feeling horrible/ unexplained blood in urine

[Guest guest]

,

Our daughter, now 11 began having seizures when she was 8 years old. At first

they were mild and hardly noticeable, so we probably missed most of them..

Finally she got diagnosed with complex partial seizures and began a low dose of

Keppra. This medicine controlled her seizures until earlier this year when one

lasted over 10 minutes. We were not at home at the time and I did not have the

Diastat with me. I guess I had became too comfortable. Since that time in

March 2010, I began noticing changes in her and felt like she was having

seizures in her sleep. IN September and October 2010 several video EEG's were

done that showed she was having subclinical seizures in her sleep and awake.

The ones when awake were not noticeable except for her pupils would dilate very

big. Her behavior became irrational at times and she would fly off the handle

and have mad spells for no reason. This too I am told by her doctors was

related to the Temporal lobe seizures she was having. The Keppra was increased

and that alone did not hold the seizures. Then Trileptal was added. She had to

be titrated up over a three week period, but I must say that I believe now that

her seizures are under control with both of these medications. I do not think

she is seizing in her sleep anymore, because her pulse ox machine is not longer

reflecting bradycardia or tachycardia events when she is asleep. Her pupils are

not dilated anymore either...and her behavior is better. I know she is

pre-puberty...due to begin her menses any time now...and have been told that

hormones play a large part in the onset of seizures in kids with

polymicrogyria. I do not know if other parents have been told this, but I

believe her hormonal changes have affected her body and brought on these

seizures. And yes, I too felt lucky in her earlier years when she did not have

seizures to deal with, but life goes on and all in all she is happy and doing

well now.

So, try the Trileptal...it could be a wonderful thing for your son.

Deb

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Wed, December 1, 2010 10:06:02 PM

Subject: Re: feeling horrible/ unexplained blood in urine

- thanks for the reply. I guess I was hoping it was an isolated seizure,

partly why we haven't given him the Trileptal these last 2 weeks. Mostly I

really want to be able to have a serious face to face conversation with a

neurologist first, but we weren't able to get in until Dec 7th. Josh goes to

Stanfords Lucille Packard. Since the seizure on Oct 30th, Josh has also started

to have alot of blood in his urine which after several appointments, ultrasounds

and tests, is unexplained. We just have to keep monitoring it. Frustrating.

Also why we can't go ketogenic now. This, after 8 years of near perfect health.

His excema is also out of control. I wish I could do something to make it

better, but I have faith it is indeed going to be OK eventually. It feels good

to hear your always bounces back. Best to all of you.

Sent from my iPad

Our son never had seizures until age 4 and has had them ever since. He is

medicated for them..and they are controlled. It doesnt mean they are not

healthy..because they can live a good life with seizure awareness and

management. If you have spikes in your EEG and your doctor prescribed

medication...I don't understand why you choose not to give it. But there is

hope... Seizures are a part of life with many of these kids...don't be

sad...try to be proactive, it is worse to see them having a complete grand mal

seizure that won't stop... We've been living with this for 9 years now...

is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't

remember.. I hate to hear your saddness... because its going to be ok. Many

of the families on this post can attest to that. Seizures are very

serious....so make sure you take the medicine or research other options such as

the Ketogenic diet.

Roxanne... had his first big seizure in his sleeep too..that is when they

have the highest tendency to seize. We always have to call 911 for Dan...he

has respiratory problems... but he always has bounced back even from the worst

seizure..

Best of luck to you... Hasselberger,

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: polymicrogyria groups <polymicrogyria >

Sent: Wed, December 1, 2010 8:21:31 PM

Subject: Re: feeling horrible ..

Hi Roxanne,

My son also just experienced his first seizure a few weeks ago, so I can really

relate. He is 8. Up until now, we felt so fortunate he had been so healthy.

What lead up to your daughters seizure? Anything different? Our Dr has now

prescribed anti seizure meds but we haven't started them. He had and EEG with

many spikes.. I've been so sad and lost with this lately. I'm here if you

ever need someone to talk to, don't hesitate!

- in CA

Sent from my iPad

my daughter just had her first seizure in her sleep .. I also had to use

her valium for the first time her seizure lasted 10 minutes gave her the

valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go

through that ..... can't stop tearing up : (

-Roxanne

**serinity 4 yrs**

[Guest guest]

Hi Deb and everyone...

also changed alot while going through puberty... he is 13 now. I think

its definately harder for girls, but Keppra can play a large role in behavioral

changes... He was on it for a long time and as the doses got higher he would

have hysterical fits and hand biting and anger. We gave him " tranxene " in the

narcotic family...at a low dose to calm him...but it only worked alittle. So we

switched to Zonnegran and weaned off keppra and he became a calmer happier

child. Seizures come the left frontal lobe with ...and aside from one

break through on 11/24 he has been sleeping fairly well and no seizures. But I

have learned also that being complacent and comfortable can be a bad thing....it

always seems like once we get comfortable something happens that throws me off

my feet!

But seizures and PMG pretty much go together... there are changes and new

medicines coming out that do not require frequent bloodwork...but I thought

Keppra was the best...until I found out it was a mood altering medicine...our

neuro has not been happy with that...

Is anyone else on Zonnegran....? I don't seem to hear about it... but it works

really well. is happy, doing extremely well in therapies and

school....and loving life. For the most part... but I refuse to get

comfortable because I am ....even after all these years of seizures....still

very nervous.

, Mom to ... Sandy Hook, CT...age 13.....bilateral diffuse PMG

80%....

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: polymicrogyria

Sent: Thu, December 2, 2010 2:55:36 AM

Subject: Re: feeling horrible/ unexplained blood in urine

,

Our daughter, now 11 began having seizures when she was 8 years old. At first

they were mild and hardly noticeable, so we probably missed most of them..

Finally she got diagnosed with complex partial seizures and began a low dose of

Keppra. This medicine controlled her seizures until earlier this year when one

lasted over 10 minutes. We were not at home at the time and I did not have the

Diastat with me. I guess I had became too comfortable. Since that time in

March 2010, I began noticing changes in her and felt like she was having

seizures in her sleep. IN September and October 2010 several video EEG's were

done that showed she was having subclinical seizures in her sleep and awake.

The ones when awake were not noticeable except for her pupils would dilate very

big. Her behavior became irrational at times and she would fly off the handle

and have mad spells for no reason. This too I am told by her doctors was

related to the Temporal lobe seizures she was having. The Keppra was increased

and that alone did not hold the seizures. Then Trileptal was added. She had to

be titrated up over a three week period, but I must say that I believe now that

her seizures are under control with both of these medications. I do not think

she is seizing in her sleep anymore, because her pulse ox machine is not longer

reflecting bradycardia or tachycardia events when she is asleep. Her pupils are

not dilated anymore either...and her behavior is better. I know she is

pre-puberty...due to begin her menses any time now...and have been told that

hormones play a large part in the onset of seizures in kids with

polymicrogyria. I do not know if other parents have been told this, but I

believe her hormonal changes have affected her body and brought on these

seizures. And yes, I too felt lucky in her earlier years when she did not have

seizures to deal with, but life goes on and all in all she is happy and doing

well now.

So, try the Trileptal...it could be a wonderful thing for your son.

Deb

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Wed, December 1, 2010 10:06:02 PM

Subject: Re: feeling horrible/ unexplained blood in urine

- thanks for the reply. I guess I was hoping it was an isolated seizure,

partly why we haven't given him the Trileptal these last 2 weeks. Mostly I

really want to be able to have a serious face to face conversation with a

neurologist first, but we weren't able to get in until Dec 7th. Josh goes to

Stanfords Lucille Packard. Since the seizure on Oct 30th, Josh has also started

to have alot of blood in his urine which after several appointments, ultrasounds

and tests, is unexplained. We just have to keep monitoring it. Frustrating.

Also why we can't go ketogenic now. This, after 8 years of near perfect health.

His excema is also out of control. I wish I could do something to make it

better, but I have faith it is indeed going to be OK eventually. It feels good

to hear your always bounces back. Best to all of you.

Sent from my iPad

Our son never had seizures until age 4 and has had them ever since. He is

medicated for them..and they are controlled. It doesnt mean they are not

healthy..because they can live a good life with seizure awareness and

management. If you have spikes in your EEG and your doctor prescribed

medication...I don't understand why you choose not to give it. But there is

hope... Seizures are a part of life with many of these kids...don't be

sad...try to be proactive, it is worse to see them having a complete grand mal

seizure that won't stop... We've been living with this for 9 years now...

is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't

remember.. I hate to hear your saddness... because its going to be ok. Many

of the families on this post can attest to that. Seizures are very

serious....so make sure you take the medicine or research other options such as

the Ketogenic diet.

Roxanne... had his first big seizure in his sleeep too..that is when they

have the highest tendency to seize. We always have to call 911 for Dan...he

has respiratory problems... but he always has bounced back even from the worst

seizure..

Best of luck to you... Hasselberger,

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: polymicrogyria groups <polymicrogyria >

Sent: Wed, December 1, 2010 8:21:31 PM

Subject: Re: feeling horrible ..

Hi Roxanne,

My son also just experienced his first seizure a few weeks ago, so I can really

relate. He is 8. Up until now, we felt so fortunate he had been so healthy.

What lead up to your daughters seizure? Anything different? Our Dr has now

prescribed anti seizure meds but we haven't started them. He had and EEG with

many spikes.. I've been so sad and lost with this lately. I'm here if you

ever need someone to talk to, don't hesitate!

- in CA

Sent from my iPad

my daughter just had her first seizure in her sleep .. I also had to use

her valium for the first time her seizure lasted 10 minutes gave her the

valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go

through that ..... can't stop tearing up : (

-Roxanne

**serinity 4 yrs**

[Guest guest]

Deborah,

I took your info and researched more, thank you. We think there is a link

between his age (early/pre-puberty) and the onset. We started the medication a

few days ago now and already his teachers are reporting he is much more alert

and focused at school. At home he is less tantrum prone already.

Another thing I noticed is he is vocalizing much more, almost desperatly at

times.

I can't help but wonder if the previous boughts of " nightterrors " were actually

post-seizures. This has happened once every season since Josh was 5, finding

him out of bed screaming/crying or hysterically laughing.

He has always had what seems to be imaginary friends at night. But I think this

has more to do with having a tough time getting play dates with other kids where

we live (extremely rural).

Best,

V

Sent from my iPhone

,

Our daughter, now 11 began having seizures when she was 8 years old. At first

they were mild and hardly noticeable, so we probably missed most of them..

Finally she got diagnosed with complex partial seizures and began a low dose of

Keppra. This medicine controlled her seizures until earlier this year when one

lasted over 10 minutes. We were not at home at the time and I did not have the

Diastat with me. I guess I had became too comfortable. Since that time in

March 2010, I began noticing changes in her and felt like she was having

seizures in her sleep. IN September and October 2010 several video EEG's were

done that showed she was having subclinical seizures in her sleep and awake.

The ones when awake were not noticeable except for her pupils would dilate very

big. Her behavior became irrational at times and she would fly off the handle

and have mad spells for no reason. This too I am told by her doctors was

related to the Temporal lobe seizures she was having. The Keppra was increased

and that alone did not hold the seizures. Then Trileptal was added. She had to

be titrated up over a three week period, but I must say that I believe now that

her seizures are under control with both of these medications. I do not think

she is seizing in her sleep anymore, because her pulse ox machine is not longer

reflecting bradycardia or tachycardia events when she is asleep. Her pupils are

not dilated anymore either...and her behavior is better. I know she is

pre-puberty...due to begin her menses any time now...and have been told that

hormones play a large part in the onset of seizures in kids with

polymicrogyria. I do not know if other parents have been told this, but I

believe her hormonal changes have affected her body and brought on these

seizures. And yes, I too felt lucky in her earlier years when she did not have

seizures to deal with, but life goes on and all in all she is happy and doing

well now.

So, try the Trileptal...it could be a wonderful thing for your son.

Deb

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Wed, December 1, 2010 10:06:02 PM

Subject: Re: feeling horrible/ unexplained blood in urine

- thanks for the reply. I guess I was hoping it was an isolated seizure,

partly why we haven't given him the Trileptal these last 2 weeks. Mostly I

really want to be able to have a serious face to face conversation with a

neurologist first, but we weren't able to get in until Dec 7th. Josh goes to

Stanfords Lucille Packard. Since the seizure on Oct 30th, Josh has also started

to have alot of blood in his urine which after several appointments, ultrasounds

and tests, is unexplained. We just have to keep monitoring it. Frustrating.

Also why we can't go ketogenic now. This, after 8 years of near perfect health.

His excema is also out of control. I wish I could do something to make it

better, but I have faith it is indeed going to be OK eventually. It feels good

to hear your always bounces back. Best to all of you.

Sent from my iPad

Our son never had seizures until age 4 and has had them ever since. He is

medicated for them..and they are controlled. It doesnt mean they are not

healthy..because they can live a good life with seizure awareness and

management. If you have spikes in your EEG and your doctor prescribed

medication...I don't understand why you choose not to give it. But there is

hope... Seizures are a part of life with many of these kids...don't be

sad...try to be proactive, it is worse to see them having a complete grand mal

seizure that won't stop... We've been living with this for 9 years now...

is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't

remember.. I hate to hear your saddness... because its going to be ok. Many

of the families on this post can attest to that. Seizures are very

serious....so make sure you take the medicine or research other options such as

the Ketogenic diet.

Roxanne... had his first big seizure in his sleeep too..that is when they

have the highest tendency to seize. We always have to call 911 for Dan...he

has respiratory problems... but he always has bounced back even from the worst

seizure..

Best of luck to you... Hasselberger,

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: polymicrogyria groups <polymicrogyria >

Sent: Wed, December 1, 2010 8:21:31 PM

Subject: Re: feeling horrible ..

Hi Roxanne,

My son also just experienced his first seizure a few weeks ago, so I can really

relate. He is 8. Up until now, we felt so fortunate he had been so healthy.

What lead up to your daughters seizure? Anything different? Our Dr has now

prescribed anti seizure meds but we haven't started them. He had and EEG with

many spikes.. I've been so sad and lost with this lately. I'm here if you

ever need someone to talk to, don't hesitate!

- in CA

Sent from my iPad

my daughter just had her first seizure in her sleep .. I also had to use

her valium for the first time her seizure lasted 10 minutes gave her the

valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go

through that ..... can't stop tearing up : (

-Roxanne

**serinity 4 yrs**

[Guest guest]

Hey ,

Thanks for letting us all on this list know that you started the medication and

that he is doing better. That just goes to prove this list is helpful for all

of us!

Keep us posted!

Deb

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Fri, December 3, 2010 6:57:18 PM

Subject: Re: feeling horrible/ unexplained blood in urine

Deborah,

I took your info and researched more, thank you. We think there is a link

between his age (early/pre-puberty) and the onset. We started the medication a

few days ago now and already his teachers are reporting he is much more alert

and focused at school. At home he is less tantrum prone already.

Another thing I noticed is he is vocalizing much more, almost desperatly at

times.

I can't help but wonder if the previous boughts of " nightterrors " were actually

post-seizures. This has happened once every season since Josh was 5, finding

him out of bed screaming/crying or hysterically laughing.

He has always had what seems to be imaginary friends at night. But I think this

has more to do with having a tough time getting play dates with other kids where

we live (extremely rural).

Best,

V

Sent from my iPhone

,

Our daughter, now 11 began having seizures when she was 8 years old. At first

they were mild and hardly noticeable, so we probably missed most of them..

Finally she got diagnosed with complex partial seizures and began a low dose of

Keppra. This medicine controlled her seizures until earlier this year when one

lasted over 10 minutes. We were not at home at the time and I did not have the

Diastat with me. I guess I had became too comfortable. Since that time in

March 2010, I began noticing changes in her and felt like she was having

seizures in her sleep. IN September and October 2010 several video EEG's were

done that showed she was having subclinical seizures in her sleep and awake.

The ones when awake were not noticeable except for her pupils would dilate very

big. Her behavior became irrational at times and she would fly off the handle

and have mad spells for no reason. This too I am told by her doctors was

related to the Temporal lobe seizures she was having. The Keppra was increased

and that alone did not hold the seizures. Then Trileptal was added. She had to

be titrated up over a three week period, but I must say that I believe now that

her seizures are under control with both of these medications. I do not think

she is seizing in her sleep anymore, because her pulse ox machine is not longer

reflecting bradycardia or tachycardia events when she is asleep. Her pupils are

not dilated anymore either...and her behavior is better. I know she is

pre-puberty...due to begin her menses any time now...and have been told that

hormones play a large part in the onset of seizures in kids with

polymicrogyria. I do not know if other parents have been told this, but I

believe her hormonal changes have affected her body and brought on these

seizures. And yes, I too felt lucky in her earlier years when she did not have

seizures to deal with, but life goes on and all in all she is happy and doing

well now.

So, try the Trileptal...it could be a wonderful thing for your son.

Deb

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Wed, December 1, 2010 10:06:02 PM

Subject: Re: feeling horrible/ unexplained blood in urine

- thanks for the reply. I guess I was hoping it was an isolated seizure,

partly why we haven't given him the Trileptal these last 2 weeks. Mostly I

really want to be able to have a serious face to face conversation with a

neurologist first, but we weren't able to get in until Dec 7th. Josh goes to

Stanfords Lucille Packard. Since the seizure on Oct 30th, Josh has also started

to have alot of blood in his urine which after several appointments, ultrasounds

and tests, is unexplained. We just have to keep monitoring it. Frustrating.

Also why we can't go ketogenic now. This, after 8 years of near perfect health.

His excema is also out of control. I wish I could do something to make it

better, but I have faith it is indeed going to be OK eventually. It feels good

to hear your always bounces back. Best to all of you.

Sent from my iPad

Our son never had seizures until age 4 and has had them ever since. He is

medicated for them..and they are controlled. It doesnt mean they are not

healthy..because they can live a good life with seizure awareness and

management. If you have spikes in your EEG and your doctor prescribed

medication...I don't understand why you choose not to give it. But there is

hope... Seizures are a part of life with many of these kids...don't be

sad...try to be proactive, it is worse to see them having a complete grand mal

seizure that won't stop... We've been living with this for 9 years now...

is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't

remember.. I hate to hear your saddness... because its going to be ok. Many

of the families on this post can attest to that. Seizures are very

serious....so make sure you take the medicine or research other options such as

the Ketogenic diet.

Roxanne... had his first big seizure in his sleeep too..that is when they

have the highest tendency to seize. We always have to call 911 for Dan...he

has respiratory problems... but he always has bounced back even from the worst

seizure..

Best of luck to you... Hasselberger,

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: polymicrogyria groups <polymicrogyria >

Sent: Wed, December 1, 2010 8:21:31 PM

Subject: Re: feeling horrible ..

Hi Roxanne,

My son also just experienced his first seizure a few weeks ago, so I can really

relate. He is 8. Up until now, we felt so fortunate he had been so healthy.

What lead up to your daughters seizure? Anything different? Our Dr has now

prescribed anti seizure meds but we haven't started them. He had and EEG with

many spikes.. I've been so sad and lost with this lately. I'm here if you

ever need someone to talk to, don't hesitate!

- in CA

Sent from my iPad

my daughter just had her first seizure in her sleep .. I also had to use

her valium for the first time her seizure lasted 10 minutes gave her the

valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go

through that ..... can't stop tearing up : (

-Roxanne

**serinity 4 yrs**

[Guest guest]

Trileptol has worked wonders for my daughter Cristina (age 4 1/2). She has been

SEIZURE FREE for over 19 months.

>

>

>

> my daughter just had her first seizure in her sleep .. I

> also had to use

>

> her valium for the first time her seizure lasted 10 minutes

> gave her the

>

> valium at 5 min ...... I'm so sad ...... man it hurts

> so much to watch her go

>

> through that ..... can't stop tearing up : (

>

>

>

> -Roxanne

>

>

>

> **serinity 4 yrs**

>

>

>

>