Re: Re: Seizures & Meds

[Guest guest]

Hi .. Be careful with asking for people's experiences on medications,

because although Topomax works for some, it had negative side affects for our

son... and my therapist actually prescribed it for me as a weight loss drug.

Our son has non convulsive seizures..as well, and has done extremely well on

Keppra... he is 9...and after weaning him off the Topomax he improved

significantly on Keppra by itself. has PMG...bilateral... he has a

history of seizures since age 4 or so..but since introducing Keppra has been

basically seizure free for 2 years...with an ocassional breakthrough. Topomax

did a number on him, he acted strange, and would not eat as much.. and his

seizures actually increased slightly...because he was on a couple of different

medications at the time... I dont know which one was causing " what " side

effect..but we dumped the Topomax and he improved.

I hope you find the right solution for her....that doesnt make her mood

change... blessings to you.

Hasselberger

Cook wrote:

,

My son has been on Topamax for about 2 years or so. We have not had

any side effects from it. He started off on a really low dose, like

12.5 (or half a 25mg tab), and over time we have increased it. He

is now on a dose of 75mg three times a day. Ethan does show seizure

activity in an EEG, but not constant like with your granddaughter.

Most of his issues appear as temperature irregularity, he has an

underdeveloped brainstem so has trouble regulating his temp.

Topamax is really good for these autonomic system issues. Ethan's

seizures are also not ones you really notice. If I had to guess I

would say most of his are absence ones, where he just zones out for

a little bit.

I do believe that with Topamax you need to watch and make sure your

granddaughter doesn't have temp issues. For some kids it makes it

hard for them to cool off, so can overheat easily. I think it

suppresses the sweat or something.

Good luck,

>

> My Granddaughter Mara, 5 yrs. old with microcephaly and PMG (BPNH)

had an EEG and MRI last Friday. The EEG was abnormal to say the

least. As soon as the technician finished hooking her up to the

machine and turned on the computer, she became very uncomfortable.

My daughter Ashlie (Mara's mom) and I noticed it. The tech went out

of the room and came back with her superior who sat down and messed

with the computer a little, then whispered to the tech and left the

room. I asked her what was going on and was it bad and she replied

yes but would not tell me anything else. The superior came back in

and said we were to go to see Mara's neurologist, who was on the 4th

floor of the same building (Children's Mercy Hospital in K.C., MO)

as soon as we finished with the EEG and MRI. We were running out of

time as the MRI was late, so my daughter went up and talked to the

neuro's asst. as her neuro had to leave. We were told that Mara is

having seizure activity all the time. Ashlie asked how often and

she said....all the time, it is constant. We asked why we couldn't

tell and she said they were non-convulsive seizures. Mara has only

had maybe 3 seizures that were noticeable and they were short and so

we had chosen not to medicate and this was with the neuro's

blessing. Well Friday he said he wished that when we saw him a year

ago he'd taken an EEG. Does this mean she's been like this for a

year.? We have many questions to ask him as it was such a shock to

us and we were so frightened that we couldn't think of all the

questions to ask. Mara had not had an EEG at this hosp. but had 2

at the hosp. in Columbia, MO and they were taken probably 2 or 3

years ago. They were abnormal but didn't show seizure activity, so

the neuro didn't medicate.

> My question is....is there anyone who has heard of this or whose

child has this type of seizure activity. Again, my daughter asked

why we couldn't tell Mara was having these all the time and

constant, and the asst. asked if Mara responded to us. Of course

she does...she smiles and laughs especially when we tickle her, she

gives kisses to us and her little sis, she gets excited when her

favorite cartoons come one, she listens to music, she responds in

many ways. This confused the asst. but she couldn't see Mara as

Mara was still having the MRI done, so they never saw her that day.

The neuro is starting her on Topomax. He said he will start her on

a low dose and work up to see if she tolerates it. Starting at

night with 25mgs once a night for 3 days, then 25 mgs once in am and

once in pm for 3 days, then 25mgs in am and 50 mgs in pm for 3 days,

the 50 mgs am and 50 mgs. pm. He said it was a pretty wide spectrum

drug and work well, but I would like to know of anyone's experience

with it so we know what to watch for and what side effects we may

watch for.

> Any info. would be appreciated.

> All prayer tremendously appreciated.

> Thanks,

> (Mara's Grandma)

>

>

[Guest guest]

Hi everyone. My daughter is six months and is currently in a topamax study. She

is suffering from what looks like acidosis also. Her seizures have decreased but

not stopped. She too has nonconvolusive seizures. Other than that, she is a

great baby. She has Topamax coupled with Phenobarbitol. Eventually we would like

to get down to one med but all thinkgs take time. If any of you have infants who

are losing weight and are on formula, add more powder than you do water. For

instance a normal four oz bottle would have two scoops, add about 1/3 more

powder. Strongly suggest talking to a Dr if your baby has a problem with reflux.

Just thought I'd let you all know you are not alone.

Keaha

lauranotdigangi wrote:

Hi . My daughter Sophia (3 years old) has been on Topamax since

she was 2 weeks old. When she was first seizing we took her to a

local hospital where they gave her big doses of drugs and the

seizures appeared to stop, but on the eeg she was having them

constantly too. She was only like that for a litle while though, and

was pretty knocked out, so I don't have much experience in that

area. Once we gave her the topamax the activity stopped and she's

been on it since then with pretty good seizure control.

As far as side effects, Topamax in Sophia causes acidosis, weight

loss/loss of appetite and trouble regulating body

temperature/decreased sweating.

Acidosis is when the body's PH level is too acidic. This can

interfere with development over time, so our neuro treat it with a

medicine called Polycitra. Acidosis is measured in regular bloodwork

by the CO2 level so it's easy to monitor. There's not much we can do

about the appetite stuff, but we are careful with her temperature-

wise. We don't have her in temperatures above 80 degrees for very

long and are sensitive to her mood and activity level when we're

outside in the summer.

Hopefully the right drug combination will get Mara's seizures under

control! Take care and keep us updated.

>

> My Granddaughter Mara, 5 yrs. old with microcephaly and PMG (BPNH)

had an EEG and MRI last Friday. The EEG was abnormal to say the

least. As soon as the technician finished hooking her up to the

machine and turned on the computer, she became very uncomfortable.

My daughter Ashlie (Mara's mom) and I noticed it. The tech went out

of the room and came back with her superior who sat down and messed

with the computer a little, then whispered to the tech and left the

room. I asked her what was going on and was it bad and she replied

yes but would not tell me anything else. The superior came back in

and said we were to go to see Mara's neurologist, who was on the 4th

floor of the same building (Children's Mercy Hospital in K.C., MO)

as soon as we finished with the EEG and MRI. We were running out of

time as the MRI was late, so my daughter went up and talked to the

neuro's asst. as her neuro had to leave. We were told that Mara is

having seizure activity all the time. Ashlie asked how often and

she said....all the time, it is constant. We asked why we couldn't

tell and she said they were non-convulsive seizures. Mara has only

had maybe 3 seizures that were noticeable and they were short and so

we had chosen not to medicate and this was with the neuro's

blessing. Well Friday he said he wished that when we saw him a year

ago he'd taken an EEG. Does this mean she's been like this for a

year.? We have many questions to ask him as it was such a shock to

us and we were so frightened that we couldn't think of all the

questions to ask. Mara had not had an EEG at this hosp. but had 2

at the hosp. in Columbia, MO and they were taken probably 2 or 3

years ago. They were abnormal but didn't show seizure activity, so

the neuro didn't medicate.

> My question is....is there anyone who has heard of this or whose

child has this type of seizure activity. Again, my daughter asked

why we couldn't tell Mara was having these all the time and

constant, and the asst. asked if Mara responded to us. Of course

she does...she smiles and laughs especially when we tickle her, she

gives kisses to us and her little sis, she gets excited when her

favorite cartoons come one, she listens to music, she responds in

many ways. This confused the asst. but she couldn't see Mara as

Mara was still having the MRI done, so they never saw her that day.

The neuro is starting her on Topomax. He said he will start her on

a low dose and work up to see if she tolerates it. Starting at

night with 25mgs once a night for 3 days, then 25 mgs once in am and

once in pm for 3 days, then 25mgs in am and 50 mgs in pm for 3 days,

the 50 mgs am and 50 mgs. pm. He said it was a pretty wide spectrum

drug and work well, but I would like to know of anyone's experience

with it so we know what to watch for and what side effects we may

watch for.

> Any info. would be appreciated.

> All prayer tremendously appreciated.

> Thanks,

> (Mara's Grandma)

>

>

[Guest guest]

hi katie,

this is trinity's mom (2 1/2 yr. old girl) with a similar diagnosis as your

granddaughter mara. she has pmg on the right side of her brain. this causes her

to have seizures, weakness or cerebral palsy on her left side of body and global

developmental delay. also, she has microcephaly which she's supposed to have a

high risk of cognitive impairment (nicer term for mental retardation); heart

murmur (vsd-ventricular septum defect); asthma; and constipation. she's supposed

to not walk, talk but she's doing them all. she's a very motivated, tough girl

she has a normal developing baby sister that's 16 mos. younger. they said

the cause of pmg was something in utero and not anything genetic or anything i

did during pregnancy. a rare disorder, i was told. that's a brief background on

my little blessing.

anyways...regarding your question. trinity was diagnosed at 6 mos. of age when

she had 2 seizures and was taken to the er. both of them involved a fever above

102, therefore, the first seizure was dismissed as febrile seizure. the second

time ( 2 weeks later) she had another grand mal where she turned blue. then did

they did an mri, eeg/ekg and i was told of her diagnosis of pmg. i was asked if

she tended to stare and i mentioned that i noticed that when she was 2mos. of

age and thought that she was just contemplating and thought, " aw! how cute. "

then was i informed that those were seizures. i was shocked. the neuro said

she's having seizures most of the time, just like you were told. small seizurres

won't affect her cognition unless it's lasted more than 30 mins. said the neuro.

in trinity's case, she has all kinds of seizures. the first ones (in 2004) were

more grand mal. in 2005, they were more petit mal, the staring ones- she had

them in may, july, & oct.. this year

2006 was in jan, nov, and recently dec. she recently relapsed and started

having them again. she started with trikeptal and her neuro hoped she would stay

controlled with one meds, but because of the recent seizures, he added 15 mg of

topomax-the sprinkles to add with food. so, i too am new with topomax the meds.

but in regards to the seizure, check if mara stares to corner of her eyes for a

couple of seconds. she might be having seizures. if she does, just relax and

observe her to make sure she's breathing, and to see how long it last. our

emergency protocol is if she turns blue, or seizure last 5 mins. to call 911 and

to take her to er.

so i hope this can help. there is hope. it's just scary since it's something

we aren't familiar with, but we as parents/relatives of our special needs

children were blessed by somebody up there. they are our blessing since somebody

up there knows we can raise this special child with lots of love, and knows we

can handle what was given to us since we were specifically the chosen family for

this child. that's something somebody told me that i thought can give you the

same sense of truth that i felt when i was told of this. in that remark, i wish

you happy holidays and regards to your family.

trinitysmom,

lionella

& Boise wrote:

My Granddaughter Mara, 5 yrs. old with microcephaly and PMG (BPNH) had

an EEG and MRI last Friday. The EEG was abnormal to say the least. As soon as

the technician finished hooking her up to the machine and turned on the

computer, she became very uncomfortable. My daughter Ashlie (Mara's mom) and I

noticed it. The tech went out of the room and came back with her superior who

sat down and messed with the computer a little, then whispered to the tech and

left the room. I asked her what was going on and was it bad and she replied yes

but would not tell me anything else. The superior came back in and said we were

to go to see Mara's neurologist, who was on the 4th floor of the same building

(Children's Mercy Hospital in K.C., MO) as soon as we finished with the EEG and

MRI. We were running out of time as the MRI was late, so my daughter went up and

talked to the neuro's asst. as her neuro had to leave. We were told that Mara is

having seizure activity all the time.

Ashlie asked how often and she said....all the time, it is constant. We asked

why we couldn't tell and she said they were non-convulsive seizures. Mara has

only had maybe 3 seizures that were noticeable and they were short and so we had

chosen not to medicate and this was with the neuro's blessing. Well Friday he

said he wished that when we saw him a year ago he'd taken an EEG. Does this mean

she's been like this for a year.? We have many questions to ask him as it was

such a shock to us and we were so frightened that we couldn't think of all the

questions to ask. Mara had not had an EEG at this hosp. but had 2 at the hosp.

in Columbia, MO and they were taken probably 2 or 3 years ago. They were

abnormal but didn't show seizure activity, so the neuro didn't medicate.

My question is....is there anyone who has heard of this or whose child has this

type of seizure activity. Again, my daughter asked why we couldn't tell Mara was

having these all the time and constant, and the asst. asked if Mara responded to

us. Of course she does...she smiles and laughs especially when we tickle her,

she gives kisses to us and her little sis, she gets excited when her favorite

cartoons come one, she listens to music, she responds in many ways. This

confused the asst. but she couldn't see Mara as Mara was still having the MRI

done, so they never saw her that day. The neuro is starting her on Topomax. He

said he will start her on a low dose and work up to see if she tolerates it.

Starting at night with 25mgs once a night for 3 days, then 25 mgs once in am and

once in pm for 3 days, then 25mgs in am and 50 mgs in pm for 3 days, the 50 mgs

am and 50 mgs. pm. He said it was a pretty wide spectrum drug and work well, but

I would like to know of anyone's

experience with it so we know what to watch for and what side effects we may

watch for.

Any info. would be appreciated.

All prayer tremendously appreciated.

Thanks,

(Mara's Grandma)

[Guest guest]

God Bless you...Trinity sounds much like when he was little.. he is 9

years old now...the only seizue med that has worked for his seizures is

Keppra... but we went the whole topomax thing at first too..they got rid of

topomax and he actually improved coginitively...but all kids are different.

We are now dealing with extreme stomach problems...two years ago..hips..lots of

surgeries.. but he is amazing..he jus tkeeps on smiling.

Good luck... and make sure you consider a consult with Dr. Dobyns clinic

in Chicago if you have not already..we learned so much there about PMG... more

than anywhere on the east coast.

Happy Holidays...

Hasselberger, Mom to age 9..pmg, bilateral.. microcephaly etc..

trinitysmom2004 wrote:

hi katie,

this is trinity's mom (2 1/2 yr. old girl) with a similar diagnosis as your

granddaughter mara. she has pmg on the right side of her brain. this causes her

to have seizures, weakness or cerebral palsy on her left side of body and global

developmental delay. also, she has microcephaly which she's supposed to have a

high risk of cognitive impairment (nicer term for mental retardation); heart

murmur (vsd-ventricular septum defect); asthma; and constipation. she's supposed

to not walk, talk but she's doing them all. she's a very motivated, tough girl

she has a normal developing baby sister that's 16 mos. younger. they said the

cause of pmg was something in utero and not anything genetic or anything i did

during pregnancy. a rare disorder, i was told. that's a brief background on my

little blessing.

anyways...regarding your question. trinity was diagnosed at 6 mos. of age when

she had 2 seizures and was taken to the er. both of them involved a fever above

102, therefore, the first seizure was dismissed as febrile seizure. the second

time ( 2 weeks later) she had another grand mal where she turned blue. then did

they did an mri, eeg/ekg and i was told of her diagnosis of pmg. i was asked if

she tended to stare and i mentioned that i noticed that when she was 2mos. of

age and thought that she was just contemplating and thought, " aw! how cute. "

then was i informed that those were seizures. i was shocked. the neuro said

she's having seizures most of the time, just like you were told. small seizurres

won't affect her cognition unless it's lasted more than 30 mins. said the neuro.

in trinity's case, she has all kinds of seizures. the first ones (in 2004) were

more grand mal. in 2005, they were more petit mal, the staring ones- she had

them in may, july, & oct.. this year

2006 was in jan, nov, and recently dec. she recently relapsed and started having

them again. she started with trikeptal and her neuro hoped she would stay

controlled with one meds, but because of the recent seizures, he added 15 mg of

topomax-the sprinkles to add with food. so, i too am new with topomax the meds.

but in regards to the seizure, check if mara stares to corner of her eyes for a

couple of seconds. she might be having seizures. if she does, just relax and

observe her to make sure she's breathing, and to see how long it last. our

emergency protocol is if she turns blue, or seizure last 5 mins. to call 911 and

to take her to er.

so i hope this can help. there is hope. it's just scary since it's something we

aren't familiar with, but we as parents/relatives of our special needs children

were blessed by somebody up there. they are our blessing since somebody up there

knows we can raise this special child with lots of love, and knows we can handle

what was given to us since we were specifically the chosen family for this

child. that's something somebody told me that i thought can give you the same

sense of truth that i felt when i was told of this. in that remark, i wish you

happy holidays and regards to your family.

trinitysmom,

lionella

& Boise wrote:

My Granddaughter Mara, 5 yrs. old with microcephaly and PMG (BPNH) had an EEG

and MRI last Friday. The EEG was abnormal to say the least. As soon as the

technician finished hooking her up to the machine and turned on the computer,

she became very uncomfortable. My daughter Ashlie (Mara's mom) and I noticed it.

The tech went out of the room and came back with her superior who sat down and

messed with the computer a little, then whispered to the tech and left the room.

I asked her what was going on and was it bad and she replied yes but would not

tell me anything else. The superior came back in and said we were to go to see

Mara's neurologist, who was on the 4th floor of the same building (Children's

Mercy Hospital in K.C., MO) as soon as we finished with the EEG and MRI. We were

running out of time as the MRI was late, so my daughter went up and talked to

the neuro's asst. as her neuro had to leave. We were told that Mara is having

seizure activity all the time.

Ashlie asked how often and she said....all the time, it is constant. We asked

why we couldn't tell and she said they were non-convulsive seizures. Mara has

only had maybe 3 seizures that were noticeable and they were short and so we had

chosen not to medicate and this was with the neuro's blessing. Well Friday he

said he wished that when we saw him a year ago he'd taken an EEG. Does this mean

she's been like this for a year.? We have many questions to ask him as it was

such a shock to us and we were so frightened that we couldn't think of all the

questions to ask. Mara had not had an EEG at this hosp. but had 2 at the hosp.

in Columbia, MO and they were taken probably 2 or 3 years ago. They were

abnormal but didn't show seizure activity, so the neuro didn't medicate.

My question is....is there anyone who has heard of this or whose child has this

type of seizure activity. Again, my daughter asked why we couldn't tell Mara was

having these all the time and constant, and the asst. asked if Mara responded to

us. Of course she does...she smiles and laughs especially when we tickle her,

she gives kisses to us and her little sis, she gets excited when her favorite

cartoons come one, she listens to music, she responds in many ways. This

confused the asst. but she couldn't see Mara as Mara was still having the MRI

done, so they never saw her that day. The neuro is starting her on Topomax. He

said he will start her on a low dose and work up to see if she tolerates it.

Starting at night with 25mgs once a night for 3 days, then 25 mgs once in am and

once in pm for 3 days, then 25mgs in am and 50 mgs in pm for 3 days, the 50 mgs

am and 50 mgs. pm. He said it was a pretty wide spectrum drug and work well, but

I would like to know of anyone's

experience with it so we know what to watch for and what side effects we may

watch for.

Any info. would be appreciated.

All prayer tremendously appreciated.

Thanks,

(Mara's Grandma)

[Guest guest]

Hello

Our son, Josse (almost 8 months) had also a lot of seizures, grand mal

epilepsy. 8 weeks ago we went to the hospital to stop this seizures and

Josse had a acth-therapy (look here for the info:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_u

ids=2554740 & dopt=Abstract> & db=PubMed & list_uids=2554740 & dopt=Abstract)

He is now without seizures.

I wondered why they don't use the acth-therapy with your children? I know

each child is different. He uses also medications: Topamax, Depakine &

Sabril.

Maybe you can ask it to the doctor.

Josse has bilateral perisylvian polymicrogyria, west-syndrome &

arthrogryposis

God bless you too!!

Happy Holidays!

Juri & family

www.familieplanckaert.be <http://www.familieplanckaert.be/>

_____

Van: polymicrogyria [mailto:polymicrogyria ]

Namens JULIE HASSELBERGER

Verzonden: zaterdag 23 december 2006 4:18

Aan: polymicrogyria

Onderwerp: Re: RE: Seizures & Meds

God Bless you...Trinity sounds much like when he was little.. he is 9

years old now...the only seizue med that has worked for his seizures is

Keppra... but we went the whole topomax thing at first too..they got rid of

topomax and he actually improved coginitively...but all kids are different.

We are now dealing with extreme stomach problems...two years ago..hips..lots

of surgeries.. but he is amazing..he jus tkeeps on smiling.

Good luck... and make sure you consider a consult with Dr. Dobyns clinic in

Chicago if you have not already..we learned so much there about PMG... more

than anywhere on the east coast.

Happy Holidays...

Hasselberger, Mom to age 9..pmg, bilateral.. microcephaly etc..

trinitysmom2004 <trinitysmom2004@ <mailto:trinitysmom2004%40yahoo.com>

yahoo.com> wrote:

hi katie,

this is trinity's mom (2 1/2 yr. old girl) with a similar diagnosis as your

granddaughter mara. she has pmg on the right side of her brain. this causes

her to have seizures, weakness or cerebral palsy on her left side of body

and global developmental delay. also, she has microcephaly which she's

supposed to have a high risk of cognitive impairment (nicer term for mental

retardation); heart murmur (vsd-ventricular septum defect); asthma; and

constipation. she's supposed to not walk, talk but she's doing them all.

she's a very motivated, tough girl she has a normal developing baby

sister that's 16 mos. younger. they said the cause of pmg was something in

utero and not anything genetic or anything i did during pregnancy. a rare

disorder, i was told. that's a brief background on my little blessing.

anyways...regarding your question. trinity was diagnosed at 6 mos. of age

when she had 2 seizures and was taken to the er. both of them involved a

fever above 102, therefore, the first seizure was dismissed as febrile

seizure. the second time ( 2 weeks later) she had another grand mal where

she turned blue. then did they did an mri, eeg/ekg and i was told of her

diagnosis of pmg. i was asked if she tended to stare and i mentioned that i

noticed that when she was 2mos. of age and thought that she was just

contemplating and thought, " aw! how cute. " then was i informed that those

were seizures. i was shocked. the neuro said she's having seizures most of

the time, just like you were told. small seizurres won't affect her

cognition unless it's lasted more than 30 mins. said the neuro. in trinity's

case, she has all kinds of seizures. the first ones (in 2004) were more

grand mal. in 2005, they were more petit mal, the staring ones- she had them

in may, july, & oct.. this year

2006 was in jan, nov, and recently dec. she recently relapsed and started

having them again. she started with trikeptal and her neuro hoped she would

stay controlled with one meds, but because of the recent seizures, he added

15 mg of topomax-the sprinkles to add with food. so, i too am new with

topomax the meds. but in regards to the seizure, check if mara stares to

corner of her eyes for a couple of seconds. she might be having seizures. if

she does, just relax and observe her to make sure she's breathing, and to

see how long it last. our emergency protocol is if she turns blue, or

seizure last 5 mins. to call 911 and to take her to er.

so i hope this can help. there is hope. it's just scary since it's something

we aren't familiar with, but we as parents/relatives of our special needs

children were blessed by somebody up there. they are our blessing since

somebody up there knows we can raise this special child with lots of love,

and knows we can handle what was given to us since we were specifically the

chosen family for this child. that's something somebody told me that i

thought can give you the same sense of truth that i felt when i was told of

this. in that remark, i wish you happy holidays and regards to your family.

trinitysmom,

lionella

& Boise <jboise1earthlink (DOT) <mailto:jboise1%40earthlink.net> net>

wrote:

My Granddaughter Mara, 5 yrs. old with microcephaly and PMG (BPNH) had an

EEG and MRI last Friday. The EEG was abnormal to say the least. As soon as

the technician finished hooking her up to the machine and turned on the

computer, she became very uncomfortable. My daughter Ashlie (Mara's mom) and

I noticed it. The tech went out of the room and came back with her superior

who sat down and messed with the computer a little, then whispered to the

tech and left the room. I asked her what was going on and was it bad and she

replied yes but would not tell me anything else. The superior came back in

and said we were to go to see Mara's neurologist, who was on the 4th floor

of the same building (Children's Mercy Hospital in K.C., MO) as soon as we

finished with the EEG and MRI. We were running out of time as the MRI was

late, so my daughter went up and talked to the neuro's asst. as her neuro

had to leave. We were told that Mara is having seizure activity all the

time.

Ashlie asked how often and she said....all the time, it is constant. We

asked why we couldn't tell and she said they were non-convulsive seizures.

Mara has only had maybe 3 seizures that were noticeable and they were short

and so we had chosen not to medicate and this was with the neuro's blessing.

Well Friday he said he wished that when we saw him a year ago he'd taken an

EEG. Does this mean she's been like this for a year.? We have many questions

to ask him as it was such a shock to us and we were so frightened that we

couldn't think of all the questions to ask. Mara had not had an EEG at this

hosp. but had 2 at the hosp. in Columbia, MO and they were taken probably 2

or 3 years ago. They were abnormal but didn't show seizure activity, so the

neuro didn't medicate.

My question is....is there anyone who has heard of this or whose child has

this type of seizure activity. Again, my daughter asked why we couldn't tell

Mara was having these all the time and constant, and the asst. asked if Mara

responded to us. Of course she does...she smiles and laughs especially when

we tickle her, she gives kisses to us and her little sis, she gets excited

when her favorite cartoons come one, she listens to music, she responds in

many ways. This confused the asst. but she couldn't see Mara as Mara was

still having the MRI done, so they never saw her that day. The neuro is

starting her on Topomax. He said he will start her on a low dose and work up

to see if she tolerates it. Starting at night with 25mgs once a night for 3

days, then 25 mgs once in am and once in pm for 3 days, then 25mgs in am and

50 mgs in pm for 3 days, the 50 mgs am and 50 mgs. pm. He said it was a

pretty wide spectrum drug and work well, but I would like to know of

anyone's

experience with it so we know what to watch for and what side effects we may

watch for.

Any info. would be appreciated.

All prayer tremendously appreciated.

Thanks,

(Mara's Grandma)

[Guest guest]

Thanks for this info, ! I have NEVER heard this and my daughter (29

months) is still on pheno! We're seeing a new neuro in a few months, I think

I'll ask about switching meds.

LoRene, mom to Molly

To: polymicrogyria@...: shell2040@...: Mon, 15 Jan 2007

23:40:40 -0500Subject: Re: Seizures & Meds

Hi Keisha and any other parents with babies/kids on Phenobarb,We learned from

Dr. Dobyns that babies/toddlers should be taken off pheno by the time they are a

year old. Many new seizure drugs start being available for use in kids when they

get to be a year old and the risk of side effects with pheno is great, too great

not to switch to another drug as soon as possible. He told us phenobarb is the

drug of choice for babies under a year, as it is the safest one and works

great....but don't forget to talk with your Neuro about switching to other

seizure meds when the child is approaching a year old. Just wanted to past this

along. We were surprised by this and our daughter was still on pheno and

approaching 2 years old when we found this out. When we asked our Neuro, he

actually agreed and immediately switched our daughter to Lamicatal....but we

couldn't get a clear answer of why he didn't do this before we brought it up to

him...sometimes doctors stupidity amazes me.Take care,[Non-text portions

of this message have been removed]

_________________________________________________________________

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[Guest guest]

,

Thats good to know. My little one was lifeflighted yesterday because she had a

seizure and stopped breathing. Has anyone else had this happen? I was so scared

but I didn't show it outward. She is in the Topamax study so she gets it in

combo with Phenobarb. I know what you mean about the stupidity. I had to ask for

my baby to be in the study b/c I knew Phenobarb alone would not work. Go figure!

shell2040@... wrote:

Hi Keisha and any other parents with babies/kids on Phenobarb,

We learned from Dr. Dobyns that babies/toddlers should be taken off pheno by

the time they are a year old. Many new seizure drugs start being available

for use in kids when they get to be a year old and the risk of side effects

with pheno is great, too great not to switch to another drug as soon as

possible. He told us phenobarb is the drug of choice for babies under a year, as

it is the safest one and works great....but don't forget to talk with your

Neuro about switching to other seizure meds when the child is approaching a year

old. Just wanted to past this along. We were surprised by this and our

daughter was still on pheno and approaching 2 years old when we found this out.

When we asked our Neuro, he actually agreed and immediately switched our

daughter to Lamicatal....but we couldn't get a clear answer of why he didn't do

this before we brought it up to him...sometimes doctors stupidity amazes me.

Take care,