seizures

[Guest guest]

Charlotte,

Based on what I've read and heard on this and other message boards, the

seizure types can be widely varied. Some children are fortunate to not have

seizures at all. I've read that it depends on what area of the brain is

effected, to what degree, if there are other malformations and overall general

health of the child.

charlotte wrote:

Hello just wondered if anyone can help me,my daughter melissa is six

and was recently diagnosed with pmg she has had seizures since the age

of two i was wondering if pmg can cause particular seizures?any help

greatly appreciated thankyou charlotte

[Guest guest]

Chrissy,

I can usually tell when Kennedy is out of a seizure by listening to her

breathing pattern, her breathing pattern is different when she's having a

seizure than it is when she's not.

Hope this helps.

and Kennedy(7yrs.,PMG)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Seizures

>Date: Mon, 23 Oct 2006 22:27:26 -0000

>

>Hello group,

>I have a few questions for those of you who's children have seizure.

>My son Mason (22months) has seizures and BF polymicrogyria. He has

>about 1-5 seizures a week but when he's sick he can have as many as 3

>seizures a day. His seizures usually last about 2-5mins, and if

>they're longer than 5 mins we have to give him diastat which doesn't

>happen very often but we have had to give it to him. My question is

>how do you tell when they're out of the seizure? Its hard for me to

>tell and I'm going to discuss it with his neurologist next time we go

>but I wanted to see if anyone had any sigestions. Mason can't move

>around much so that makes it harder to tell also. During his seizures

>he jackknifes and then extends then starts kicking and his eyes are

>usually dialated while he's in the seizure. If anyone has any advise

>for me that would be great. Thanks and have a great night!

>

>Chrissy

>Mom to Mason (22months, PMG, Cortical vision impairment, seizure

>disorder)

>

>

>

>

>

>

[Guest guest]

Hi Chrissy, When is out of a seizure he will be very limp and tired..

and his color will come back into his cheeks..and his eyes will be able to focus

on me.. It gets hard for me to tell, when he is having a partial complex and he

appears to be asleep..but after several eeg's we know that he is seizing based

on the crazy brain patterns. But like Kennedy, his breathing patterns are

also very different during a seizure.. We have only had one that didnt stop

with Diastat...and he had to be ventilated to breathe in the icu when all the

medications would not stop the seizure.. it was that experience that brought

us the knowledge that sometimes they may not come out of a seizure... its

probably not that common.. but something to be aware of... has

bilateral frontal pmg..as well. He is turning 9 years old next month...and is

healthy and happy.

God Bless

Hasselberger

Ken Jennings wrote:

Chrissy,

I can usually tell when Kennedy is out of a seizure by listening to her

breathing pattern, her breathing pattern is different when she's having a

seizure than it is when she's not.

Hope this helps.

and Kennedy(7yrs.,PMG)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Seizures

>Date: Mon, 23 Oct 2006 22:27:26 -0000

>

>Hello group,

>I have a few questions for those of you who's children have seizure.

>My son Mason (22months) has seizures and BF polymicrogyria. He has

>about 1-5 seizures a week but when he's sick he can have as many as 3

>seizures a day. His seizures usually last about 2-5mins, and if

>they're longer than 5 mins we have to give him diastat which doesn't

>happen very often but we have had to give it to him. My question is

>how do you tell when they're out of the seizure? Its hard for me to

>tell and I'm going to discuss it with his neurologist next time we go

>but I wanted to see if anyone had any sigestions. Mason can't move

>around much so that makes it harder to tell also. During his seizures

>he jackknifes and then extends then starts kicking and his eyes are

>usually dialated while he's in the seizure. If anyone has any advise

>for me that would be great. Thanks and have a great night!

>

>Chrissy

>Mom to Mason (22months, PMG, Cortical vision impairment, seizure

>disorder)

>

>

>

>

>

>

[Guest guest]

Thanks Chrissy, she sleeps 22 out of 24 hours daily. I hate seeing her

like that. She is on formula. Her pediatrician felt it would be best

to keep her just on formula until she is 1 and just adding vitamins.

Savannah is having them daily so I'm wondering if the phenobarb is

doing more harm than good. She feeds fine from a bottle but I do still

worry about the 3-5 month news though. We find out tomorrow if she has

the cortical visual impairment.Thank you so much for the info.

> >

> > My daughter Savannah (4 months) has PMG, stage 5 lissencephaly and

> > microcephaly. I was told that between 3-5 months of age they are at a

> > great risk of dying due to aspiration. Has anyone else heard this?

> > Also, with her seizures she has a repetitive jerking motion to one

> > side (left) and her eyes dilate. After they are over, she too becomes

> > limp and immediately goes to sleep. They last between 3-5 minutes. The

> > neurologist just keeps upping her dose of phenobarb. Is this safe?

> > This is still so new to me and any info you provide is greatly

> > appreciated.

> > Keasha

> >

>

[Guest guest]

I can only speak from experience, and phenobarb did not work with us, as I

think someone has already said if it does it is great and if not upping the

dosage is probably not going to make any difference. 'Also, without wanting

to panic you I would check with your neuro that the jerking seizures are not

Infantile Spasms - they probably aren't, but just in case it is best to be

sure as this type of seizure is best tackled early.

With best wishes

Mum to (4 yrs PMG, intractable seizures)

Seizures

My daughter Savannah (4 months) has PMG, stage 5 lissencephaly and

microcephaly. I was told that between 3-5 months of age they are at a

great risk of dying due to aspiration. Has anyone else heard this?

Also, with her seizures she has a repetitive jerking motion to one

side (left) and her eyes dilate. After they are over, she too becomes

limp and immediately goes to sleep. They last between 3-5 minutes. The

neurologist just keeps upping her dose of phenobarb. Is this safe?

This is still so new to me and any info you provide is greatly

appreciated.

Keasha

[Guest guest]

--- centworthy wrote:

> Date: Wed, 25 Oct 2006 14:58:30 -0000

>

> To: polymicrogyria-owner

> Subject: Re: Seizures

>

> Keasha;

>

> You mention the seizures on one side. This happens to my

> Step Daughter

> too, on the right side. In her case, it's likely because

> the left side

> of her brain is affected with PMG. Her the last EEG

> indicated seizures

> starting on the left side moving to the right. Since the

> left side of

> the brain controls the right side of the body this is the

> likely reason

> we see more jerks on the right.

>

>

> >

> > My daughter Savannah (4 months) has PMG, stage 5

> lissencephaly and

> > microcephaly. I was told that between 3-5 months of age

> they are at a

> > great risk of dying due to aspiration. Has anyone else

> heard this?

> > Also, with her seizures she has a repetitive jerking

> motion to one

> > side (left) and her eyes dilate. After they are over,

> she too becomes

> > limp and immediately goes to sleep. They last between

> 3-5 minutes. The

> > neurologist just keeps upping her dose of phenobarb. Is

> this safe?

> > This is still so new to me and any info you provide is

> greatly

> > appreciated.

> > Keasha

> >

>

>

>

>

>

[Guest guest]

Hi all

My son is 25 months, he was diagnosed with pmg at 17 months after having

an mri which showed he had it on the left side. He had very mild seizures where

he would loose the use in his right arm and the side of his face but would make

a full recovery a short time after.

never really crawled he bum shuffled lifting his right arm up, walked at

14 months everything was going really well.

1 month ago he woke in the morning not able to use his right side, things

started to get worse he had an ear infection (otitis) he has been put in

hospital having very bad seizures lasting over 1 hour he was put on rivotril,

tegratol & upped his dose of depakine. He had to have tubes down his throat to

help him breathe. He has just had another mri results saying maybe it's not pmg

but it's dyspasia he also has an edema, he is going for another mri in 2 months

to see if the edema has dried up.

I'm sorry this is so long but was wondering if any of you have had your

results changed like this as i feel more confused about all of this now. Or has

anyone been diagnosed with dysplasia or could give me any info.

Thank you

Tammy

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

My daughter also has had multiple mri's showing cortical dysplasia. The mri

report said " areas of cortical dysplasia and/or polymicrogyria " . When I noticed

that, I joined this group and learned about Dr. Dobyns, so I sent her MRI to

him. He just got back to me saying he didn't really see polymicrogyria, but more

likely a type of focal cortical dysplasia. Apparently areas of FCD are more

blurry and PMG is more defined. I'm messing up his words, but it seems that

there could be some confusion about which one it is depending on who is looking

at your mri. I would say at this point you should send your records to him and

see what he says about which one it is. Showing FCD instead of PMG might not

change your treatment options much as far as the seizures go, but it might make

your doctors starting talking about surgery to remove the areas of dysplasia.

Not that brain surgery is a relief! But it does seem to be an option in some

kids depending on where the dysplasia is and if

it's only on one side, and doctors have started going to it as opposed to

trying every single seizure drug available.

[Guest guest]

I am also interested in Dr. Dobyns info.What can you tell me about this

specialist? My grandson has been having uncontrollable seizures and he had

an MRI after birth which was abnormal, he has also coded more than once and

possible could have brain damage from apoxia to the brain.

Thank you,

Liz

-- Re: Re:seizures

Could somebody please send me Dr. Dobyns contact info? My daughter Lily just

had an MRI and I would like to send him her MRI.

Thanks,

-------------- Original message --------------

My daughter also has had multiple mri's showing cortical dysplasia. The mri

report said " areas of cortical dysplasia and/or polymicrogyria " . When I

noticed that, I joined this group and learned about Dr. Dobyns, so I sent

her MRI to him. He just got back to me saying he didn't really see

polymicrogyria, but more likely a type of focal cortical dysplasia.

Apparently areas of FCD are more blurry and PMG is more defined. I'm messing

up his words, but it seems that there could be some confusion about which

one it is depending on who is looking at your mri. I would say at this point

you should send your records to him and see what he says about which one it

is. Showing FCD instead of PMG might not change your treatment options much

as far as the seizures go, but it might make your doctors starting talking

about surgery to remove the areas of dysplasia. Not that brain surgery is a

relief! But it does seem to be an option in some kids depending on where the

dysplasia is and if

it's only on one side, and doctors have started going to it as opposed to

trying every single seizure drug available.

[Guest guest]

I don't know as much about him as some of the other members of the

group, but I know he's a geneticist who studies PMG, and many here

have seen him. He will also review films for free. I have his latest

contact info as follows:

Following is the information for Dr. Dobyns:

B. Dobyns, MD, PhD

University of Chicago

Department of Human Genetics

5841 S. land Avenue

Room L151, MC 0077

Chicago, IL 60637

Mail films to:

920 E. 58th Street

CLSC 319

Chicago, IL 60637

Email

wbd@...

Office Phone

Office Fax

If you do a search through this database of old messages, you will

find tons of info and opinions on him. I sent him my daughter's MRI

and he sent a brief email after he looked at it, and then called me

and we talked for 20 minutes. Pretty amazing, considering there was

no charge.

>

> I am also interested in Dr. Dobyns info.What can you tell me about

this

> specialist? My grandson has been having uncontrollable seizures

and he had

> an MRI after birth which was abnormal, he has also coded more than

once and

> possible could have brain damage from apoxia to the brain.

> Thank you,

> Liz

>

> -- Re: Re:seizures

>

> Could somebody please send me Dr. Dobyns contact info? My daughter

Lily just

> had an MRI and I would like to send him her MRI.

> Thanks,

>

>

> -------------- Original message --------------

>

> My daughter also has had multiple mri's showing cortical

dysplasia. The mri

> report said " areas of cortical dysplasia and/or polymicrogyria " .

When I

> noticed that, I joined this group and learned about Dr. Dobyns, so

I sent

> her MRI to him. He just got back to me saying he didn't really see

> polymicrogyria, but more likely a type of focal cortical dysplasia.

> Apparently areas of FCD are more blurry and PMG is more defined.

I'm messing

> up his words, but it seems that there could be some confusion

about which

> one it is depending on who is looking at your mri. I would say at

this point

> you should send your records to him and see what he says about

which one it

> is. Showing FCD instead of PMG might not change your treatment

options much

> as far as the seizures go, but it might make your doctors starting

talking

> about surgery to remove the areas of dysplasia. Not that brain

surgery is a

> relief! But it does seem to be an option in some kids depending on

where the

> dysplasia is and if

> it's only on one side, and doctors have started going to it as

opposed to

> trying every single seizure drug available.

>

>

>

>

[Guest guest]

Do they return the films to you?

lauranotdigangi wrote: I don't know as much

about him as some of the other members of the

group, but I know he's a geneticist who studies PMG, and many here

have seen him. He will also review films for free. I have his latest

contact info as follows:

Following is the information for Dr. Dobyns:

B. Dobyns, MD, PhD

University of Chicago

Department of Human Genetics

5841 S. land Avenue

Room L151, MC 0077

Chicago, IL 60637

Mail films to:

920 E. 58th Street

CLSC 319

Chicago, IL 60637

Email

wbd@...

Office Phone

Office Fax

If you do a search through this database of old messages, you will

find tons of info and opinions on him. I sent him my daughter's MRI

and he sent a brief email after he looked at it, and then called me

and we talked for 20 minutes. Pretty amazing, considering there was

no charge.

>

> I am also interested in Dr. Dobyns info.What can you tell me about

this

> specialist? My grandson has been having uncontrollable seizures

and he had

> an MRI after birth which was abnormal, he has also coded more than

once and

> possible could have brain damage from apoxia to the brain.

> Thank you,

> Liz

>

> -- Re: Re:seizures

>

> Could somebody please send me Dr. Dobyns contact info? My daughter

Lily just

> had an MRI and I would like to send him her MRI.

> Thanks,

>

>

> -------------- Original message --------------

>

> My daughter also has had multiple mri's showing cortical

dysplasia. The mri

> report said " areas of cortical dysplasia and/or polymicrogyria " .

When I

> noticed that, I joined this group and learned about Dr. Dobyns, so

I sent

> her MRI to him. He just got back to me saying he didn't really see

> polymicrogyria, but more likely a type of focal cortical dysplasia.

> Apparently areas of FCD are more blurry and PMG is more defined.

I'm messing

> up his words, but it seems that there could be some confusion

about which

> one it is depending on who is looking at your mri. I would say at

this point

> you should send your records to him and see what he says about

which one it

> is. Showing FCD instead of PMG might not change your treatment

options much

> as far as the seizures go, but it might make your doctors starting

talking

> about surgery to remove the areas of dysplasia. Not that brain

surgery is a

> relief! But it does seem to be an option in some kids depending on

where the

> dysplasia is and if

> it's only on one side, and doctors have started going to it as

opposed to

> trying every single seizure drug available.

>

>

>

>

[Guest guest]

I sent 's films back in 1999. They returned them without my asking-

to Canada, even!

~

>

> Do they return the films to you?

>

[Guest guest]

,

I know that feeling.  My daughter had a single seizure at 18 month, we did meds

for about a year -  nothing more.  We took her off of meds until she was 5.  I

watched her every moment.  And then, when I finally let my guard down, she

started again - with force.

Now that she is 11 I worry about EVERYTHING.  From her dating, to her going to

the park, to sleepovers.  It is not easy, and there is no sugar coating it.  Her

seizures have evolved, her medicine stopped working (twice), and she now takes

10 pills per day to keep them controlled.  But, every time she does something

strange I want to bury my head in a pillow and just cry.

I'll never forget when I get her diagnosis of CP - the doctor said the only

thing he could tell me was that it wouldn't get any worse or better.  It was

what it was.  Then with the seizures I realized that it COULD get worse.  Her

biggest event was in January and it took 48 hours for the left side of her face

to go back to " normal " (that is her affected side).

I know this may be making this worse, but I just want you to know that somehow

it gets more settled.  It becomes routine.  The worrying goes to the back burner

and becomes white noise.  You WILL get through this and settle into the

routine.  It is just another bend in the road.  You made it through the Dx -

take a deep breath and get ready.

If there is anything I can answer (after almost 11 years of seizures of all

kinds I have a bit of working knowledge) please ask either in private or through

the list.  Trust your neuro - and if you ever question them get another

opinion. 

And, be there to love him when he comes out of a seizure.  Hold his hand, and

keep your tears for behind the closed door.  It is scary for them most of the

time because they see how scared you are.  It is hard, but it does get easier.

R. Holman

PADI OWSI #193832

Subject: Seizures

To: " Cerebral Palsy Moms " <cerebralpalsymoms >,

polymicrogyria

Date: Monday, July 21, 2008, 9:56 PM

Some of you may know that I worried a lot about Evan having seizures, I went

through times when I watched him like a hawk and examined every little thing he

did that was weird, I researched the different types of seizures so I felt

prepared at what to do in case one happened. Well, in January Evan started

having seizures, he had one that entailed staring, retching, crankiness,

vomitting and then sleeping for a long period afterward. He has had episodes of

staring and/or weird eye movements where I have thought maybe it was a seizure

but it happened quickly and I was not sure. Plus, he was on a medication for the

seizures and we were supposed to be getting an EEG in the near future.

Well, he was doing ok with just a few questionable events in a month or so.

While on vacation on July 2nd Evan had what I would call a moderate seizure. He

had staring, eye jumping, vomitting, crankiness and sleeping. We went to a new

neurologist( see post on 7-17-08).

Well last night he woke up retching and vomitted quite a few times but not a lot

of stuff came out. He was not able to sit up and was not crying or upset that

this was happening, like a child usually is if they throw up. It was also not a

full stomach emptying which I thought was suspicious. Anyway, he fell back to

sleep and then woke up about 40 minutes later and started vomitting again and

then he kind of cried a bit and then fell back to sleep until this morning at

8:30am. He woke up happy and did not get sick or act sick and was eating fine.

This makes me confident that the episodes were seizures and not some kind of flu

bug.

I wonder why this is happening, maybe because we have a new neuro who is

awesome, then Evan's body felt it could let loose. I am not to thrilled with

this becoming a constant concern as it seems to be at this point. I know that

sounds horrible, but for all the worrying that I did about Evan having seizures

I now worry that he will have big problems with respiratory or losing

consiencenious. We now have our RX for the Diastat but if I have to use it that

is a big deal.

I just worry about them affecting Evan's development, who knows maybe the

activity already has impeded him. This world is sometimes so unknown. I am so

scared that I am going to have to call the ambulance for Evan one of these days

and I am afraid that it will be at night or I will freeze up or maybe some

damage will be done before the get there. I don't know, now it all seems so real

to me. I hate this part of the special needs life.

I know in my mind that I will be able to handle it if he has a big seizure, I

think it just scares me. And it is something that I do not want to see my baby

go through, but also I feel like I am just waiting for this to happen like I

waited for the seizures to start. And now I am feeling like I can't leave him

with anyone for an extended period of time or go anywhere that there is not a

hospital close by just in case. I researched the hospitals when we went to

Burney and he had a seizure, not one that needed emergency treatment but still.

I think I just hate feeling this way and being worried. I really just want to

let it go and go on with life but I have a hard time with it sometimes. I know

some of my friends and acquaintances deal with seizures on a daily basis and

have had their children hospitalized on more than one occasion for it and I feel

like my situation is so trivial compared to that.

Well now I am rambling but I just had to get my feelings out.

:01 PM 0 comments

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily .blogspot. com

[Guest guest]

,

Mysha (my daughter) had staring spells, still does in fact.  They have gotten

better, but have never gone away.  They do consider them seizures.  I have

learned that if I catch it and clap right in front of her face and get no

reaction it is a seizure.  I mean, I don't care how zoned out you are - if

someone does that to you you will blink or something.  Usually I miss it, and

realize it when she loses the track of a conversation (when she was your son's

age she couldn't count past 32 w/o losing track because of little seizures that

we weren't seeing).  It got really bad in school (her teacher said she wasn't

following directions) and that is how we knew her meds had stopped working

again.

She has had 3 really " big " seizures.  2 of them had a reason that could be

easily pin pointed (for some reason that made them easier to deal with).  The

last one had no real cause and was by far the scariest.  She typically has

complex partial in her sleep - transitioning between from awake to sleep is

really hard on her brain and they usually come then.  Or during the night when

she goes through her lighter sleep cycles.  She has no memory in the morning,

but she drools until it soaks her hair, and she is really tired / irritable in

the morning.  Almost like a hang over (terrible likeness, but the best I could

think of). 

Her big one came out of the blue and rocked my world.  She was in the middle of

talking to me, stopped and looked really scared.  I ran to her and grabbed her

shoulders trying to keep it from happening (I am getting tears in my eyes typing

this).  I couldn't stop it (of course, I knew that).  Her eyes went up, her

mouth opened and closed, and then she dropped.  Okay, now this was still her

" normal " seizure, just awake.  Then her limbs began to twitch and she was in a

grand mal.  For 12 minutes.  I am a paramedic, train First Responders, and have

been the mother of an epileptic child for almost 10 years.  I have diastat on

hand.  I freaked.  I dialed 911 and just tried to hold her.  Everything I knew

went out the window. But, you know, she ended up okay.  And in the end that is

what matters.  It brought us to a new and amazing neuro, and we began the

surgery work up that might end her seizures.  But, I can never explain how

helpless you

feel when it happens.  There is no way to prepare. 

Now that I sit here and re-read this I am wondering if it is helping you or

scaring you??  Is it too much??  Let me know and I'll stop telling you.  I just

know that I like to be prepared for the worst and pray for the best.  So few

people have been honest with me regarding my daughter that I always appreciated

a little truth.  I know not everyone is ready. 

R. Holman

PADI OWSI #193832

From: ich <gabeandevansmom@ yahoo.com>

Subject: Seizures

To: " Cerebral Palsy Moms " <cerebralpalsymoms@ yahoogroups. com>, polymicrogyria@

yahoogroups. com

Date: Monday, July 21, 2008, 9:56 PM

Some of you may know that I worried a lot about Evan having seizures, I went

through times when I watched him like a hawk and examined every little thing he

did that was weird, I researched the different types of seizures so I felt

prepared at what to do in case one happened. Well, in January Evan started

having seizures, he had one that entailed staring, retching, crankiness,

vomitting and then sleeping for a long period afterward. He has had episodes of

staring and/or weird eye movements where I have thought maybe it was a seizure

but it happened quickly and I was not sure. Plus, he was on a medication for the

seizures and we were supposed to be getting an EEG in the near future.

Well, he was doing ok with just a few questionable events in a month or so.

While on vacation on July 2nd Evan had what I would call a moderate seizure. He

had staring, eye jumping, vomitting, crankiness and sleeping. We went to a new

neurologist( see post on 7-17-08).

Well last night he woke up retching and vomitted quite a few times but not a lot

of stuff came out. He was not able to sit up and was not crying or upset that

this was happening, like a child usually is if they throw up. It was also not a

full stomach emptying which I thought was suspicious. Anyway, he fell back to

sleep and then woke up about 40 minutes later and started vomitting again and

then he kind of cried a bit and then fell back to sleep until this morning at

8:30am. He woke up happy and did not get sick or act sick and was eating fine.

This makes me confident that the episodes were seizures and not some kind of flu

bug.

I wonder why this is happening, maybe because we have a new neuro who is

awesome, then Evan's body felt it could let loose. I am not to thrilled with

this becoming a constant concern as it seems to be at this point. I know that

sounds horrible, but for all the worrying that I did about Evan having seizures

I now worry that he will have big problems with respiratory or losing

consiencenious. We now have our RX for the Diastat but if I have to use it that

is a big deal.

I just worry about them affecting Evan's development, who knows maybe the

activity already has impeded him. This world is sometimes so unknown. I am so

scared that I am going to have to call the ambulance for Evan one of these days

and I am afraid that it will be at night or I will freeze up or maybe some

damage will be done before the get there. I don't know, now it all seems so real

to me. I hate this part of the special needs life.

I know in my mind that I will be able to handle it if he has a big seizure, I

think it just scares me. And it is something that I do not want to see my baby

go through, but also I feel like I am just waiting for this to happen like I

waited for the seizures to start. And now I am feeling like I can't leave him

with anyone for an extended period of time or go anywhere that there is not a

hospital close by just in case. I researched the hospitals when we went to

Burney and he had a seizure, not one that needed emergency treatment but still.

I think I just hate feeling this way and being worried. I really just want to

let it go and go on with life but I have a hard time with it sometimes. I know

some of my friends and acquaintances deal with seizures on a daily basis and

have had their children hospitalized on more than one occasion for it and I feel

like my situation is so trivial compared to that.

Well now I am rambling but I just had to get my feelings out.

:01 PM 0 comments

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily .blogspot. com

[Guest guest]

,

 

I have friends whose kids have the grand mal seizures and one whose son has been

hospitalized on numerous occasions so I have heard the stories of bad seizures,

I mean it scares but not because of what you have said but just because I know

it is a major possibility that it can happen. And since we have had 2 this month

it makes it even scarier.

 

I think having to get an RX for Diastat just kind of brings it all home that

this is a huge reality for us now.

 

Thanks for the response again.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

From: ich <gabeandevansmom@ yahoo.com>

Subject: Seizures

To: " Cerebral Palsy Moms " <cerebralpalsymoms@ yahoogroups. com>, polymicrogyria@

yahoogroups. com

Date: Monday, July 21, 2008, 9:56 PM

Some of you may know that I worried a lot about Evan having seizures, I went

through times when I watched him like a hawk and examined every little thing he

did that was weird, I researched the different types of seizures so I felt

prepared at what to do in case one happened. Well, in January Evan started

having seizures, he had one that entailed staring, retching, crankiness,

vomitting and then sleeping for a long period afterward. He has had episodes of

staring and/or weird eye movements where I have thought maybe it was a seizure

but it happened quickly and I was not sure. Plus, he was on a medication for the

seizures and we were supposed to be getting an EEG in the near future.

Well, he was doing ok with just a few questionable events in a month or so.

While on vacation on July 2nd Evan had what I would call a moderate seizure. He

had staring, eye jumping, vomitting, crankiness and sleeping. We went to a new

neurologist( see post on 7-17-08).

Well last night he woke up retching and vomitted quite a few times but not a lot

of stuff came out. He was not able to sit up and was not crying or upset that

this was happening, like a child usually is if they throw up. It was also not a

full stomach emptying which I thought was suspicious. Anyway, he fell back to

sleep and then woke up about 40 minutes later and started vomitting again and

then he kind of cried a bit and then fell back to sleep until this morning at

8:30am. He woke up happy and did not get sick or act sick and was eating fine.

This makes me confident that the episodes were seizures and not some kind of flu

bug.

I wonder why this is happening, maybe because we have a new neuro who is

awesome, then Evan's body felt it could let loose. I am not to thrilled with

this becoming a constant concern as it seems to be at this point. I know that

sounds horrible, but for all the worrying that I did about Evan having seizures

I now worry that he will have big problems with respiratory or losing

consiencenious. We now have our RX for the Diastat but if I have to use it that

is a big deal.

I just worry about them affecting Evan's development, who knows maybe the

activity already has impeded him. This world is sometimes so unknown. I am so

scared that I am going to have to call the ambulance for Evan one of these days

and I am afraid that it will be at night or I will freeze up or maybe some

damage will be done before the get there. I don't know, now it all seems so real

to me. I hate this part of the special needs life.

I know in my mind that I will be able to handle it if he has a big seizure, I

think it just scares me. And it is something that I do not want to see my baby

go through, but also I feel like I am just waiting for this to happen like I

waited for the seizures to start. And now I am feeling like I can't leave him

with anyone for an extended period of time or go anywhere that there is not a

hospital close by just in case. I researched the hospitals when we went to

Burney and he had a seizure, not one that needed emergency treatment but still.

I think I just hate feeling this way and being worried. I really just want to

let it go and go on with life but I have a hard time with it sometimes. I know

some of my friends and acquaintances deal with seizures on a daily basis and

have had their children hospitalized on more than one occasion for it and I feel

like my situation is so trivial compared to that.

Well now I am rambling but I just had to get my feelings out.

:01 PM 0 comments

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily .blogspot. com

[Guest guest]

I am thinking of you guys while the weaning is happening. I do not think the

medication has affected Evan too much, but we are only on one med. We will

likely try Depakote next and I worry how that will affect him. After he had his

little episode early this morning I just could not get to sleep because I was

just watching him for any other symptoms. My husband works nights so I called

him because who else could I call at that time of night or morning. He felt bad

that he could not be here to help.

 

Well I better get my self off the computer and pay attention to my kiddos.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

From: ich <gabeandevansmom@ yahoo.com>

Subject: Seizures

To: " Cerebral Palsy Moms " <cerebralpalsymoms@ yahoogroups. com>,

polymicrogyria@ yahoogroups. com

Date: Monday, July 21, 2008, 9:56 PM

Some of you may know that I worried a lot about Evan having seizures, I went

through times when I watched him like a hawk and examined every little thing

he did that was weird, I researched the different types of seizures so I

felt prepared at what to do in case one happened. Well, in January Evan

started having seizures, he had one that entailed staring, retching,

crankiness, vomitting and then sleeping for a long period afterward. He has

had episodes of staring and/or weird eye movements where I have thought

maybe it was a seizure but it happened quickly and I was not sure. Plus, he

was on a medication for the seizures and we were supposed to be getting an

EEG in the near future.

Well, he was doing ok with just a few questionable events in a month or so.

While on vacation on July 2nd Evan had what I would call a moderate seizure.

He had staring, eye jumping, vomitting, crankiness and sleeping. We went to

a new neurologist( see post on 7-17-08).

Well last night he woke up retching and vomitted quite a few times but not a

lot of stuff came out. He was not able to sit up and was not crying or upset

that this was happening, like a child usually is if they throw up. It was

also not a full stomach emptying which I thought was suspicious. Anyway, he

fell back to sleep and then woke up about 40 minutes later and started

vomitting again and then he kind of cried a bit and then fell back to sleep

until this morning at 8:30am. He woke up happy and did not get sick or act

sick and was eating fine. This makes me confident that the episodes were

seizures and not some kind of flu bug.

I wonder why this is happening, maybe because we have a new neuro who is

awesome, then Evan's body felt it could let loose. I am not to thrilled with

this becoming a constant concern as it seems to be at this point. I know

that sounds horrible, but for all the worrying that I did about Evan having

seizures I now worry that he will have big problems with respiratory or

losing consiencenious. We now have our RX for the Diastat but if I have to

use it that is a big deal.

I just worry about them affecting Evan's development, who knows maybe the

activity already has impeded him. This world is sometimes so unknown. I am

so scared that I am going to have to call the ambulance for Evan one of

these days and I am afraid that it will be at night or I will freeze up or

maybe some damage will be done before the get there. I don't know, now it

all seems so real to me. I hate this part of the special needs life.

I know in my mind that I will be able to handle it if he has a big seizure,

I think it just scares me. And it is something that I do not want to see my

baby go through, but also I feel like I am just waiting for this to happen

like I waited for the seizures to start. And now I am feeling like I can't

leave him with anyone for an extended period of time or go anywhere that

there is not a hospital close by just in case. I researched the hospitals

when we went to Burney and he had a seizure, not one that needed emergency

treatment but still. I think I just hate feeling this way and being worried.

I really just want to let it go and go on with life but I have a hard time

with it sometimes. I know some of my friends and acquaintances deal with

seizures on a daily basis and have had their children hospitalized on more

than one occasion for it and I feel like my situation is so trivial compared

to that.

Well now I am rambling but I just had to get my feelings out.

:01 PM 0 comments

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and

SM to 16yrs

www.justinichfamily .blogspot. com