Re: possible invisible seizure?

[Guest guest]

I agree that it could very well be seizure activity. My son Eli (age 6) had 2

video EEG's done within the last year, and they both came back " normal " even

though he was having spells 3 to 8 times a day, but after doing some further

research on my own, I was able to convince the doctors that he IS experiencing

complex partial seizures. What I have learned is that seizures which start in

the frontal lobe are very rarely picked up on an EEG and therefore are often

misdiagnosed. The types of seizures that can arise from the frontal lobe vary

greatly depending on the specific area of the brain that is effected, but in

many cases consciousness is only " clouded " so they would be able to respond if

their name is called, but may have difficulty speaking or responding

appropriately. The seizures tend to be short (anywhere from a few seconds to 2

or 3 minutes) and the confusion and sleepiness that is seen after some other

types of seizures, may be very minimal or not present at all with frontal lobe

seizures. Any sort of dazed look, unusual movements, abrupt behavioral changes,

even changes in breathing patterns can indicate seizure activity. It took me a

while to convince our neuro, but they finally agreed to add on another seizure

med, and my son is now gradually getting under better control. He also had a

couple grand mal seizures when he was very young, but I have learned that the

seizure types can change as the child grows. Eli's current type of seizures

(the complex partial) did not start until he was 5. It just made sense to me

since my son's PMG primarily effects his frontal lobe, that this is where the

seizure activity comes from. I still can't understand why the " professionals "

didn't put that together! It no longer surprises me that we (the parents) often

have to educate our doctors about our kids! And yes, being sick can also lower

the seizure threshold, as well as being tired or stressed. So, I would say that

you have every right to keep bugging them about it! You know your child and you

can tell when something isn't right!

Feel free to contact me anytime!

Good luck!

>

> Okay I need some advice. My daughter was sick this past week along with strep.

Once she was placed on antibiotics she was much better. I contacted our neuro

because she was having this dazed look but she was alert just 'out-of-it " ,

speaking really soft, having trouble finding words, and would all of a sudden

get really tired. I saw no obvious seizures but there was definitely something

awry. The neuro just wrote us off saying it was from her being sick however she

was better the day before. They just said that if she is still on antibiotics

then she is still " sick " and just to let them know if it continues.

> I know there is more to it and isn't it common for seizures to increase when

there is illness?

> I just feel lost in know what is going on with my little lady. She is 7 but

all her EEGs have been normal seizure-wise(I am told) except for showing she has

a risk of seizure due to spikes. We have not seen an actual seizure that we knew

for sure was one except when she was 1 and had a high fever. She has woke up in

the morning and lost all motor function and such which we are told there is no

other explanation but a nocturnal seizures. It is just hard to not know what is

going on.

> Has anyone else experienced this?

> S

>

[Guest guest]

I agree that it probably is a partial complex seizure with an altered state of

consciousness. My daughter has many types of seizures (mostly absence, grand

mal, and partial complex). It sounds a lot like her behavior during partial

complex seizures. She'll either sit & stare, " shiver " , or shrug her shoulders

repeatedly. Her face usually turns red. Afterward, she'll look confused, move

slowly, get sleepy, and need to cuddle. (She's 2, by the way.) She's aware &

responsive during the event--just very slow & not happy (unusual for her).

Anyway, she's been having thses for a while. After severe break-through

seizures, I talked with a nurse from neurology & explained the behavior. She

said they were complex partials & that the doctor's notes said she was

susceptible. I just wonder why no one told me earlier.

She also said that if the event lasts more than 5 mins, we need to give her

emergency meds (or take her to the ER, if you don't have any).

Definitely record the event, if you can, and talk to your neurologist.

Best of luck,

[Guest guest]

Our daughter takes Lomictal, which works pretty well, but she still has

breakthroughs occasionally. Our neuro, whom we love, explained to us that given

the brain formation of kids with PMG, it is likely that through out her life she

will have seizures. We had four years clear of any seizure activity, after she

was diagnosed with infantile spasm, so overall I count us as lucky! We carry

Diastat with us at all times (one in the baby bag, one at home), in case of

" status " which is the kind/length of seizure mentions, below. You NEVER

want to let a kid go over 5 minutes.

Good luck!

Thea in NY

To: polymicrogyria <polymicrogyria >

Sent: Wed, Mar 9, 2011 7:20 am

Subject: Re: possible invisible seizure?

I agree that it probably is a partial complex seizure with an altered state of

consciousness. My daughter has many types of seizures (mostly absence, grand

mal, and partial complex). It sounds a lot like her behavior during partial

complex seizures. She'll either sit & stare, " shiver " , or shrug her shoulders

repeatedly. Her face usually turns red. Afterward, she'll look confused, move

slowly, get sleepy, and need to cuddle. (She's 2, by the way.) She's aware &

responsive during the event--just very slow & not happy (unusual for her).

Anyway, she's been having thses for a while. After severe break-through

seizures, I talked with a nurse from neurology & explained the behavior. She

said they were complex partials & that the doctor's notes said she was

susceptible. I just wonder why no one told me earlier.

She also said that if the event lasts more than 5 mins, we need to give her

emergency meds (or take her to the ER, if you don't have any).

Definitely record the event, if you can, and talk to your neurologist.

Best of luck,

[Guest guest]

Thank you everyone for your responses. The neuro called me back today and just

wants me to watch her until she is better and get back to them with an update in

a few weeks.

However I am sure their response will be the same in a few weeks.

She just had a 6 day EEG which didn't show seizures but there were spikes

showing she is at risk.

Her PMG is frontal so that is very interesting about those being harder to pick

up. She uses a walker due to right side weakness and her walking is very

different during these episodes.

I googled complex partials and I am pretty much convinced that is what is going

on. She has been on Keppra for 1.5 years but it is just so frustrating not to

know what exactly is going on. Seems like your neuros give you more information

than her's does. I was told that she had delta-wave slowing and that she is at

risk but they don't know when she will start having full seizures. I think she

is but we are just missing them and doing another EEG is probably pointless

because nothing happens at the time of the EEG.

I find this forum more informative as I am being told these are not typical of

seizures however they must be typical of PMG ones as our kiddos are sharing

them.

S

> >

> > Okay I need some advice. My daughter was sick this past week along with

strep. Once she was placed on antibiotics she was much better. I contacted our

neuro because she was having this dazed look but she was alert just 'out-of-it " ,

speaking really soft, having trouble finding words, and would all of a sudden

get really tired. I saw no obvious seizures but there was definitely something

awry. The neuro just wrote us off saying it was from her being sick however she

was better the day before. They just said that if she is still on antibiotics

then she is still " sick " and just to let them know if it continues.

> > I know there is more to it and isn't it common for seizures to increase when

there is illness?

> > I just feel lost in know what is going on with my little lady. She is 7 but

all her EEGs have been normal seizure-wise(I am told) except for showing she has

a risk of seizure due to spikes. We have not seen an actual seizure that we knew

for sure was one except when she was 1 and had a high fever. She has woke up in

the morning and lost all motor function and such which we are told there is no

other explanation but a nocturnal seizures. It is just hard to not know what is

going on.

> > Has anyone else experienced this?

> > S

> >

>