Seizures

[Guest guest]

Hi ,

My son didn't have seizures until he was 4 1/2. It was a huge deal with the

doctors at the time and from what I understand there were 2 other children

with PMG under the doctor's care at Miami Children's hospital who also had not

had seizures. Count your blessings and hope for the best. The seizures are the

bad part of PMG.

Joanne

[Guest guest]

Hi Joann,

My son didn't have seizures until he was 4 1/2.

What were the signs that he had when he got them?

Is he now on medicine?

Were they noticeable?

When he slept?

What type of PMG does your son have?

When does the obsession stop??? I am loosing sleep,

sad a lot, and can't stop thinking and researching the

net. I go to sleep thinking about it and wake up

doing the same. I know it's a wait and see situation.

But I need to let it gooooo and not be so so so

obsessed with it all the time. It's new it's only

been since Oct but seems like a lifetime. She is so

fine. Speech is the only thing lacking. Her right

side is a little more stiff but seems to be getting

better. I guess I am just hoping for that MIRACLE

that one day it will all click for her and this will

all be in the past.

thanks so much,

__________________________________________

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[Guest guest]

Hi Karla,

When my son had his first couple of seizures - he also made a strange sound -

it wasn't a cry - more like a howl - and his jaw locked - I was so scared. I

didn't notice anything unusual with his chest though. Its awful to see this

happen - and when I questioned our dr. about it - he just grouped it as part of

the seizure. In regards to the chest and heart questions i'm of little help -

sorry - speak to your ped. who should be able to give you more info on the

impact the seizure has on the heart/lungs/breathing. Best wishes - mum to

.

springtimegarden wrote:

My daughter had a seizure last night we have had eeg and nothing shows

up, but they seem to be lasting longer. Her body was jumping but her

eyes were not rolling back but what scared me was the sound that she

was making and the way her chest went it was like her heart was

stopping. Does anyone know if this could happen? thanks karla mother

to sidney

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[Guest guest]

keesha , my son is almost 7 and he was on phenobarbitol for the first nine mths

and his neou kept upping it too .then we weened him off and and put him on

topomax and keppra,he went from seizures daily to having them now when hes got

a real bad cold or hes put on weight and its time to up the med. has

pmgaffecting most of his brain,he is in the 1st grade and the kids love him,he

got about 20 or more girl friends.

I think might be aspirating so hes going in for an upper gi.but back to the

seizures,he does the jerking to and stiffens his body his head goes to the left.

after being put on the new meds he was doing so well they weened him off the

topomax,he nows only has them when hes sick really bad he walks with walker45%

of the time. now being good in class thats another story,he now empties his

freinds pencil box on purpose and justs laughs. erica mom joe-man

lakeasha_w wrote: 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]

Phenobarb is one of the oldest and " safest " (mostly because its been around

forever and they know alot about it) seizure meds out there. Your doctor can

order labs to check the levels in your daughter's blood to make sure that they

aren't giving her too much. They may be increasing it to get it to a

therapeutic level. If the med level is too low it won't have a chance to

improve seizures. Phenobarb is often combined with other seizure meds as it

works to help the body process them more/less.

That said, phenobarb can be very sedating. Go with your gut. If you don't see

a difference keep asking questions.

Lorene

To: polymicrogyria@...: lakeasha_w@...: Tue, 24 Oct

2006 17:26:10 +0000Subject: Seizures

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

I was told that between 3-5 months of age they are at agreat risk of dying due

to aspiration. Has anyone else heard this?Also, with her seizures she has a

repetitive jerking motion to oneside (left) and her eyes dilate. After they are

over, she too becomeslimp and immediately goes to sleep. They last between 3-5

minutes. Theneurologist just keeps upping her dose of phenobarb. Is this

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

greatlyappreciated.Keasha

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[Guest guest]

Hi Chrissy,

One of the tricks we use is to blow lightly in Molly's face. If she responds by

blinking or turning her head, she's not seizing anymore. This is sometimes the

only way we know is she is having an absence seizure/staring spell. We also

turn the lights on/off to see if she reacts to the change.

Lorene, mom to Molly (26 months)

To: polymicrogyria@...: masonsmom1222@...: Mon, 23 Oct

2006 22:27:26 +0000Subject: Seizures

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!ChrissyMom to Mason (22months, PMG, Cortical vision impairment,

seizure disorder)

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[Guest guest]

My daughter, Mikayla had several seizures a day until she was about 6 months

old, we started ACTH shots twice a day. We might see one or two a month now,

but that is all. She is now 21 months old. She started out on Phenobarbital

and Topomax too. She continues to take Topomax, but no more Phenobarbital.

Good luck,

Lotz

> This is only my 2nd post but an avid reader. My son is 6 1/2 months

> old with PMG, he has had seizures since the day he was born. They

> started out with 2 or 3 then progressed to, at one point 56 in one

> day. He was admitted to Childrens in Boston for 3 weeks and put on

> Phenobarbitol (which he wa on since birth) Topomax and Vigabatrin

> (Sabril). He still is inconsistant with his numbers, they range from 8

> to 18 in a day. My wife and I are just wondering if there are others

> that are going through this, with little relief from medication after 6

> months. Since the seizures elevated in July we have watched him

> regress in all his funtions, including loss of eye control and motor

> function. In the last couple months it feeels like we have lost a lot

> and are fearing we will keep loosing. He is choking more during his

> feedings and I question if this is the next step. I dont mean to

> ramble on, we are just wondering if this is somewhat, a normal patern

> for what they are calling hard to control seizure? thank you in

> advance for any information that you may have.

>

>

>

[Guest guest]

Hi,

We just recently visited my son's Neurologist in Miami, and I noticed a lot of

information about seizure control at the Dan Marino Center, at Miami Children's

Hospital. I did not gather any brochures because we don't have this problem

with (he just has the Rolandic Epilepsy), but I read a brochure that they

talked in depht about a specific surgery for seizures. It may be a good idea to

take a look at the Miami Children's Hospital website, by the way, his

neurologist's name is Dr. o Tuchman and he was referred to me as one of

the experts in Polymicrogyria.

Deborah

fdgroup4 wrote:

This is only my 2nd post but an avid reader. My son is 6 1/2 months

old with PMG, he has had seizures since the day he was born. They

started out with 2 or 3 then progressed to, at one point 56 in one

day. He was admitted to Childrens in Boston for 3 weeks and put on

Phenobarbitol (which he wa on since birth) Topomax and Vigabatrin

(Sabril). He still is inconsistant with his numbers, they range from 8

to 18 in a day. My wife and I are just wondering if there are others

that are going through this, with little relief from medication after 6

months. Since the seizures elevated in July we have watched him

regress in all his funtions, including loss of eye control and motor

function. In the last couple months it feeels like we have lost a lot

and are fearing we will keep loosing. He is choking more during his

feedings and I question if this is the next step. I dont mean to

ramble on, we are just wondering if this is somewhat, a normal patern

for what they are calling hard to control seizure? thank you in

advance for any information that you may have.

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

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[Guest guest]

Here is the is the info about the Miami Children's Hospital program. I know

surgery is such a complicated choice, but they may have other (newer) treatments

available.

Neurosurgery Surgical Treatment

The neurosurgery program at Miami Children's Hospital is one of the most

experienced such programs for pediatric epilepsy patients in the world. For

patients with medically resistant seizures, surgery offers hope for cessation of

seizures, or a significant reduction in their severity and frequency. Pediatric

brain surgery is an exceptionally delicate discipline that often requires

precise brain mapping and a high degree of teamwork among the neurosurgeon,

neurologist/epileptologist, EEG technologist and other members of the treatment

team. Even this highly sophisticated team cannot eliminate all of the risks of

surgery, but can minimize that risk as much as possible.

Earlier surgical intervention improves outcomes compared to surgery performed

later in life, because the developing brain can re-establish neural pathways

which take over all or part of the functions of the excised abnormal brain.

Surgery offers pediatric patients the greatest opportunity to improve quality of

life, a benefit that must be weighted very carefully against the risks involved.

Miami Children's Hospital has a spectrum of physicians, nurses, and support

staff services that complement and enhance the neurosurgical care. Our

neuro-radiological staff is second to none. There is a group of pediatric

neurologists that support the neurosurgical program. A world-renowned

neuropathologist is in house and there is neuro-oncology support.

The Division of Neurological Surgery also has enhanced Miami Children's

reputation for excellence in areas such as the surgical treatment of epilepsy in

childhood, brain tumors, and craniofacial dysotoses in children as well as

treatment of congenital problems of the nervous system, such as hydrocephalus,

spina bifida, and spasticity. The increased use of minimally

invasive-endoscopic-techniques has significantly benefited a number of children.

Some children with hydrocephalus who would have needed a permanent shunt have

been treated with an endoscopic Third Ventriculostomy via this technique.

The Miami Children's Hospital Neurosurgery Division continues to relieve

children of severe neurological problems at an early age. Not only are our

surgeons saving lives, but they are helping to minimize the social isolation and

difficulties in education, which their patients may face throughout their lives.

fdgroup4 wrote:

This is only my 2nd post but an avid reader. My son is 6 1/2 months

old with PMG, he has had seizures since the day he was born. They

started out with 2 or 3 then progressed to, at one point 56 in one

day. He was admitted to Childrens in Boston for 3 weeks and put on

Phenobarbitol (which he wa on since birth) Topomax and Vigabatrin

(Sabril). He still is inconsistant with his numbers, they range from 8

to 18 in a day. My wife and I are just wondering if there are others

that are going through this, with little relief from medication after 6

months. Since the seizures elevated in July we have watched him

regress in all his funtions, including loss of eye control and motor

function. In the last couple months it feeels like we have lost a lot

and are fearing we will keep loosing. He is choking more during his

feedings and I question if this is the next step. I dont mean to

ramble on, we are just wondering if this is somewhat, a normal patern

for what they are calling hard to control seizure? thank you in

advance for any information that you may have.

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

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[Guest guest]

tracey this is of scary to not know of why a child would be of to

stagger and fall to the floor. but will share at times for me I to get

of actual to a state of this as if drunk even though not drinked of any

alcohol and have not a clue what causes that but it never caused of me

to pass out but I to stagger and have no coordination to walk right and

many assume of me to be of drunk.

My youngest one when younger use to be of to have severe low blood

sugar drops in the morning and if she is of not given food right away

she will become much lathargic and lays and appears not connected to

you at all and would then dry heave of her tummy because she is of so

sick until she gets of the food in her. she does not do this much now

but has a strong history of this most of her early years, she is of

almost 15 now.

Sondra

[Guest guest]

When this happened this morning she had just eaten so doctors don't think is is

blood sugar. She is also have some stomach problems in May she had vomiting

episodes- about once a week, she would throw up a bunch of times, no fever or

any other symptoms, then she would be fine. She also is having diarrhea

periodically. She is taking Prilosec for reflux and we awaiting an appointment

with a gastroenterologist. I'm not sure- maybe the stomach thing and what

happened this morning are connected. I hate not knowing and then having to wait

for a few weeks before we can see specialists.

Re: seizures

tracey this is of scary to not know of why a child would be of to

stagger and fall to the floor. but will share at times for me I to get

of actual to a state of this as if drunk even though not drinked of any

alcohol and have not a clue what causes that but it never caused of me

to pass out but I to stagger and have no coordination to walk right and

many assume of me to be of drunk.

My youngest one when younger use to be of to have severe low blood

sugar drops in the morning and if she is of not given food right away

she will become much lathargic and lays and appears not connected to

you at all and would then dry heave of her tummy because she is of so

sick until she gets of the food in her. she does not do this much now

but has a strong history of this most of her early years, she is of

almost 15 now.

Sondra

[Guest guest]

What does her stool look like? Any dark, blood in it? Sometimes

diarrhea can lead to anemia, that could make her light headed. Have

they checked for H. plyori or C. difficile? You might wanna consider

asking them to take stool cultures, for some reason gastros avoid

checking the poop, those are two of the most common gut bugs I read about.

HTH,

Debi

-

[Guest guest]

I have not checked her stool to see the color, I will do that tomorrow. Her

regular dr. has not run any tests and I am waiting for the appointment with the

gastro Dr. I should find out tomorrow when the appointment will be. I tried to

make it myself and they said they could not see her until July, I am hoping if

her regular Dr. calls to make the appointment she can get in sooner.

Re: seizures

What does her stool look like? Any dark, blood in it? Sometimes

diarrhea can lead to anemia, that could make her light headed. Have

they checked for H. plyori or C. difficile? You might wanna consider

asking them to take stool cultures, for some reason gastros avoid

checking the poop, those are two of the most common gut bugs I read about.

HTH,

Debi

-

[Guest guest]

Has she ever had seizures before?

Our Neurologist said it was normal for kids with Autism to be more prone to

seizures and I've read where they can often start at puberty.

I also saw a Medical Mystery show where a little girl was having vomitting

episodes in the middle of the night, but would wake up later and not

remember a thing. After a LONG time of this and lots of dr. visits they

finally found out that she was having seizures and instead of convulsions

like we normally see and associate with a seizure, she was vomitting.

Of course it had to be going on for sometime before they got that far.

Does she have any memory of the situation this morning?

>

> My daughter is high functioning and is starting puberty. No period yet

> but lots of hair etc. She is 11. Has anyone had a child start to have

> seizures during puberty? My daughter staggered around the kitchen this

> morning and then collapsed. She could have fainted but it could have been

> some kind of seizure. Her doctor wasn't sure. He is sending her to a

> neurologist.

>

>

>

>

[Guest guest]

My girl had a seizure last year... our neurologist said yes

definitely much more common for kids with autism to have seizures.

Whatever it was I hope they figure it out and it does not happen

again. So scary, I know.

> Has she ever had seizures before?

> Our Neurologist said it was normal for kids with Autism to be more

> prone to

> seizures and I've read where they can often start at puberty.

> I also saw a Medical Mystery show where a little girl was having

> vomitting

> episodes in the middle of the night, but would wake up later and not

> remember a thing. After a LONG time of this and lots of dr. visits

> they

> finally found out that she was having seizures and instead of

> convulsions

> like we normally see and associate with a seizure, she was vomitting.

> Of course it had to be going on for sometime before they got that far.

> Does she have any memory of the situation this morning?

>

>

> >

> > My daughter is high functioning and is starting puberty. No

> period yet

> > but lots of hair etc. She is 11. Has anyone had a child start to

> have

> > seizures during puberty? My daughter staggered around the kitchen

> this

> > morning and then collapsed. She could have fainted but it could

> have been

> > some kind of seizure. Her doctor wasn't sure. He is sending her to a

> > neurologist.

> >

> >

> >

> >

[Guest guest]

,

Hormonal changes can commonly cause seizures, so this is why we often

see an increase in noticeable seizure activity around puberty. She

may have been having subclinical seizures for some time prior to

this. It's a good idea to add (or increase) B6, magnesium and DMG

(dimethylglycine) as these can help reduce seizure activity.

Hopefully you can fined out more after she is evaluated.

[Guest guest]

My child had sub clinical seizures, starting at about thirteen. I increased

magnesium and B also--it seems to do some good---There is regression sometimes

after seizure activity--but usually they come around quickly--Bill

- " Breaking Autism's Barriers A Father's Story "

From: cathylynn2 & lt;cathybuckley@... & gt;

Subject: Re: seizures

To: Autism_in_Girls

Date: Tuesday, June 3, 2008, 9:57 AM

,

Hormonal changes can commonly cause seizures, so this is why we often

see an increase in noticeable seizure activity around puberty. She

may have been having subclinical seizures for some time prior to

this. It's a good idea to add (or increase) B6, magnesium and DMG

(dimethylglycine) as these can help reduce seizure activity.

Hopefully you can fined out more after she is evaluated.

[Guest guest]

no she does not remember, the last thing she remembered was standing at the

kitchen counter then the next thing she remembered was being in the bed (her dad

carried her an put her in the bed)

Re: seizures

Has she ever had seizures before?

Our Neurologist said it was normal for kids with Autism to be more prone to

seizures and I've read where they can often start at puberty.

I also saw a Medical Mystery show where a little girl was having vomitting

episodes in the middle of the night, but would wake up later and not

remember a thing. After a LONG time of this and lots of dr. visits they

finally found out that she was having seizures and instead of convulsions

like we normally see and associate with a seizure, she was vomitting.

Of course it had to be going on for sometime before they got that far.

Does she have any memory of the situation this morning?

>

> My daughter is high functioning and is starting puberty. No period yet

> but lots of hair etc. She is 11. Has anyone had a child start to have

> seizures during puberty? My daughter staggered around the kitchen this

> morning and then collapsed. She could have fainted but it could have been

> some kind of seizure. Her doctor wasn't sure. He is sending her to a

> neurologist.

>

>

>

>

[Guest guest]

I'd be willing to bet it was a seizure then... but Hopefully you'll get some

more solid answers from the dr.

Hopefully it doesn't continue.

My daughter is almost 5, and has had seizures (pretty bad ones) since she

was 7mo. old

I wouldn't wish that on my worst enemy to see their kids go through that.

Theresa

>

> no she does not remember, the last thing she remembered was standing at

> the kitchen counter then the next thing she remembered was being in the bed

> (her dad carried her an put her in the bed)

>

> Re: seizures

>

> Has she ever had seizures before?

> Our Neurologist said it was normal for kids with Autism to be more prone to

> seizures and I've read where they can often start at puberty.

> I also saw a Medical Mystery show where a little girl was having vomitting

> episodes in the middle of the night, but would wake up later and not

> remember a thing. After a LONG time of this and lots of dr. visits they

> finally found out that she was having seizures and instead of convulsions

> like we normally see and associate with a seizure, she was vomitting.

> Of course it had to be going on for sometime before they got that far.

> Does she have any memory of the situation this morning?

>

> On 6/2/08, Horwath <hman43@... <hman43%40earthlink.net>>

> wrote:

> >

> > My daughter is high functioning and is starting puberty. No period yet

> > but lots of hair etc. She is 11. Has anyone had a child start to have

> > seizures during puberty? My daughter staggered around the kitchen this

> > morning and then collapsed. She could have fainted but it could have been

> > some kind of seizure. Her doctor wasn't sure. He is sending her to a

> > neurologist.

> >

> >

> >

> >

[Guest guest]

Hello james My daughter has Autism she is 27 years old she started having

seizures with puberty and they are uncontrolled with meds she has tried every

med known still seizures and way too many seizures her seizures are directly

related to hormone changes she is being evaluated next week for epilepsy surgery

joni

Horwath wrote: My daughter is high

functioning and is starting puberty. No period yet but lots of hair etc. She is

11. Has anyone had a child start to have seizures during puberty? My daughter

staggered around the kitchen this morning and then collapsed. She could have

fainted but it could have been some kind of seizure. Her doctor wasn't sure. He

is sending her to a neurologist.

[Guest guest]

Not sure I would say seizure just yet. Did the child fall to the

floor quickly or stagger for 30+ seconds? It was not clear to me in

the post. If the child staggered for some time I would suspect other

things first. Imbalance in blood chem for example. Had she eaten

recently or was she on an " empty tank " ? After she collapsed were her

eyes open but she was unresponsive? If her eyes were closed and she

was unresponsive I would again shy away from a neuro related root

causes and look to body chemestry first. As we all know, the bodies

chemestry changes significantly in puberty and those changes can

cause all sorts of things, including seizuers unfortunately. Document

her mood and eating and sleeping pattern for the 24 hours prior to

the event and 4 hours after the event and discuss it with your

doctor. Did she sleep it off and snap out of it quickly afterwards?

The doctor will want to know that as well. Good Luck and keep asking,

there are no dumb questions when it comes to our Girls !

> > >

> > > My daughter is high functioning and is starting puberty. No

period yet

> > > but lots of hair etc. She is 11. Has anyone had a child start

to have

> > > seizures during puberty? My daughter staggered around the

kitchen this

> > > morning and then collapsed. She could have fainted but it could

have been

> > > some kind of seizure. Her doctor wasn't sure. He is sending her

to a

> > > neurologist.

> > >

> > >

> > >

> > >

[Guest guest]

She staggered around and then ran into the microwave then fell to the floor. I

don't know about her eyes when she fell, I do know her eyes were open when she

started- her dad was calling her name and she did not respond. She had just

eaten before this happened. She slept for 2-3 hours after the episode.

Re: seizures

Not sure I would say seizure just yet. Did the child fall to the

floor quickly or stagger for 30+ seconds? It was not clear to me in

the post. If the child staggered for some time I would suspect other

things first. Imbalance in blood chem for example. Had she eaten

recently or was she on an " empty tank " ? After she collapsed were her

eyes open but she was unresponsive? If her eyes were closed and she

was unresponsive I would again shy away from a neuro related root

causes and look to body chemestry first. As we all know, the bodies

chemestry changes significantly in puberty and those changes can

cause all sorts of things, including seizuers unfortunately. Document

her mood and eating and sleeping pattern for the 24 hours prior to

the event and 4 hours after the event and discuss it with your

doctor. Did she sleep it off and snap out of it quickly afterwards?

The doctor will want to know that as well. Good Luck and keep asking,

there are no dumb questions when it comes to our Girls !

> > >

> > > My daughter is high functioning and is starting puberty. No

period yet

> > > but lots of hair etc. She is 11. Has anyone had a child start

to have

> > > seizures during puberty? My daughter staggered around the

kitchen this

> > > morning and then collapsed. She could have fainted but it could

have been

> > > some kind of seizure. Her doctor wasn't sure. He is sending her

to a

> > > neurologist.

> > >

> > >

> > >

> > >

[Guest guest]

,

When I saw your email, I definitely had to reply... YES, she could

start having seizures during puberty... as a matter of fact, that is

when it is most likely for seizures to begin occurring due to hormone

changes, etc. My daughter, Cassie, who has autism started having

seizures just before the outward signs of puberty started. She

continues to have seizure disorder; however, it has been pretty much

controlled with medications. There is a LOT of information and

literature that discusses how hormones are a trigger for seizures, as

well as lack of sleep, excitement levels, etc.

We know that certain birth control medications can increase your chance

for seizures and should be closely monitored. My daughter started

having seizures again after being put on a birth control pill to help

her periods to be more manageable for her. We are in the process of

figuring out how to balance these needs so that she does not have any

more seizures. She had been seizure-free for almost 9 years prior to

this recent development.

It is VERY scary to be going through all this... there are different

kinds of seizures and some are hard to detect while others are life-

threatening... best to be informed and educate yourself on these

symptoms and what to do so you can do the right thing when or if you

are called upon to do so. Having the doctor evaluate her is VERY

wise. There are some things they can do to tell what is going on...

most importantly the lab work to see chemically what is happening can

lead to possible specific solutions for your daughter's seizure type.

It will also be most helpful if you can remember any particular facial

expressions and what side of the face, etc... any and all details can

be incredibly important... writing down exactly what you remember now

and taking that with you to the doctor's office when you have the

appointment is recommended...

Please keep us posted as to how she is doing and what you find out...

Best of the Best to You All!!!

>

> My daughter is high functioning and is starting puberty. No period

yet but lots of hair etc. She is 11. Has anyone had a child start to

have seizures during puberty? My daughter staggered around the kitchen

this morning and then collapsed. She could have fainted but it could

have been some kind of seizure. Her doctor wasn't sure. He is sending

her to a neurologist.

>

>

>

>

[Guest guest]

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]

Thanks that really helps. Evan has was are probably complex partial seizures. He

starts with staring and not responding to his name, or he wakes up retching and

then has the staring and or eye jumping, then followed by vomitting and

crankiness. Last night it was just vomitting and not wanting to sit up, it ws

1:36am so I was not completely alert but I think I would say that he was pretty

unresponsive as in he was not looking at me or crying after the vomitting and

then he went to sleep pretty fast, just like he did with the one on July 2nd.

Then he woke up about 40 minutes later and vomitted again and only then did he

start to kind of cry, I kind of thought it was a bug but he slept for the rest

of the night and woke up this morning like nothing was wrong and has had a

normal day and eaten with no vomitting, plus when he vomitted it was not like it

was all of his dinner or anything so that was somewhat abnormal to me also.

 

I think my biggest fear is what I consider a big seizure. But I know that I will

be able to handle it and just as the worrying about seizures got better over

time I am sure now that he has them my worrying will get better also.

 

In your experience do you think that 3-5 second staring, not answering to his

name episodes could be considered seizures? His neuro said they could be, but

how do you tell that from just a regular zoning out?

 

We have a new neuro who is great so I am very confident about the care we will

receive.

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