Seizures

[Guest guest]

The Diastat is a comfort to have but scary like you said. Because it just

brings it to reality that crap..one could be really serious! I am nervous

because had Infantile Spasm seizures that we were finally able to get

under control and he is now getting weaned off the antiseizure meds because

of 4 clean EEG's. But because of the malformation.they are always possible.

So being completely off the meds is going to scare the crap out of me. But

I also look forward to the day because I will see how 's personality

really is with out drugs. He has been on some sort of drug since he was 4

months old.

melanie

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of ich

Sent: Tuesday, July 22, 2008 12:11 AM

To: polymicrogyria

Subject: Re: Seizures

,

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]

,

Hopefully Evan will have an EEG soon and give you some idea what's going on.

Your experience sounds familiar to me but not with my Step Daughter, it was my

son. My son, now 21 YO and not epileptic, used to get severe headaches at night

and then wake up with episodes of vomitting (usually before he could get out of

bed). The cause: food allergy.

We never figured out what exactly it was but it's in lunch meat, hot dogs or

any meat that comes in a can (i.e spaghetti with meatballs). Got to the point

where I could set a clock by it. The headache would start right at bedtime, he

would usually be able to fall asleep, but by 2:00 AM, the puke fest began. He's

fine now, outgrew it (eats MRE's all the time as a Marine).

So hold out hope, maybe it's not a dreaded seizure. I know would look

and act quite off when the headache hit. So if you get a clean eeg you may want

to look at any new foods or pattern to what touches off the episodes.

Penny - Step Mom to nela - 16 YO - unilateral PMG-PNH and LGS

ich wrote:

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