Re: POSSIBLE SEIZURE ALERT

[Guest guest]

Lori,

I am really sorry to hear of your son's seizures. Thankfully you

have been able to get them to stop. I have never heard of a helmet

or band causing seizures before. Hopefully one of our experts here

will chime in and share with you what they know. Prior to getting

the helmet, did your son have any x-rays or cat scans done to rule

out cranio? If not, I would really recommend you pushing to get a #D

cat scan to be sure he doesn't have cranio, which could cause

seizures. Please keep us updated.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> My 16 month old son has been wearing a helmet for 6 months with OK

progress.

> Like many others, we were told his head would pop out. We recieved

his

> helmet at 10 months. He will wear it another 7. Long journey.

Two weeks

> ago, he woke up from his nap, and heat was radiating from the holes

in the

> helmet. Not warm, but absolutely HOT. About two minutes later, he

had a

> seizure. Thank God not a grandmal seizure, a focal seizure, which

looks like

> he has a shiver. He then proceeded to have 2 more. Within the

hour we were

> at Children's Hospital in Seattle and having an EEG, which

confirmed the

> seizures. He had a MRI the next day to rule out a brain tumor. He

had about

> 50 seizures in 5 days, and has not had any more in about 9. He is

on an

> anti-seizure medication which has produced no side effects so far.

Of course

> my first question was about the helmet, and 5 neurologists assured

me it was

> not because of the helmet. I can't help but correlate the heat

coming out of

> the holes to the seizure. I don't mean to frighten anyone, his

helmet is

> back on, but has anyone heard of this before? Lori.

[Guest guest]

Lori:

Welcome to our group. How scary all of this must be right now with

the seizures. I haven't heard of helmets or bands ever causing any

types of seizures. Have you had any type of other tests to possibly

find out what could be causing these seizures? You did say he had an

MRI which showed no brain tumor (thank God), but are there other

tests that can be done? You must be a nervous wreck.

I agree with Niki, has he had a CTscan done ever to rule out

craniosynostosis? If not, then that would be a good idea.

Debbie Abby's mom

MI

> My 16 month old son has been wearing a helmet for 6 months with OK

progress.

> Like many others, we were told his head would pop out. We recieved

his

> helmet at 10 months. He will wear it another 7. Long journey.

Two weeks

> ago, he woke up from his nap, and heat was radiating from the holes

in the

> helmet. Not warm, but absolutely HOT. About two minutes later, he

had a

> seizure. Thank God not a grandmal seizure, a focal seizure, which

looks like

> he has a shiver. He then proceeded to have 2 more. Within the

hour we were

> at Children's Hospital in Seattle and having an EEG, which

confirmed the

> seizures. He had a MRI the next day to rule out a brain tumor. He

had about

> 50 seizures in 5 days, and has not had any more in about 9. He is

on an

> anti-seizure medication which has produced no side effects so far.

Of course

> my first question was about the helmet, and 5 neurologists assured

me it was

> not because of the helmet. I can't help but correlate the heat

coming out of

> the holes to the seizure. I don't mean to frighten anyone, his

helmet is

> back on, but has anyone heard of this before? Lori.

[Guest guest]

Hello. I am the one who posted about the seizures. From what I have read, why I think the helmet could have caused the seizures is different why you do. I think that the heat that the helmet produced the day of his first seizure was why. It was unbelievable. His head has been of course hot before, but nothing like it was that day. Funny thing is, is that we live in Seattle where it rarely snows, and there was a snow storm that day. It's not like we live in a warm climate. Anyway, I'm sorry what you are going through, I know what it is like to feel helpless. We have continued with the helmet, along with his anti-seizure medication, and we will see what happens. My thoughts and prayers are with you.

[Guest guest]

Hi everyone, I have been on the site everyday and last entered any

information back in december. I will refresh your memory your memory. I have

a now 7 1/2 month old boy named Garrett. We live in Manassas Park, VA and

have been in a DOC Band since 11/6/01 until 12/31/01 and second band 1/11/02

to present. Garrett has an extensive history and had an xray and CT scan to

check his sutures which were open, but has external pooling of spinal fluid

on his brain, MRI negative and EEG normal. HE too has had a petit mal on New

Years Day 1/1/02 and his second seizure was on Valentines day 2/14/02.

Yesterday they started him in phenobarbital (antiseizure med, which by the

way tastes awful and we can barely get him to take the whole 3ml of it). He

also is develpmentally delayed and hypotonic. TRYING LIKE HELL TO GET EARLY

INTERVETNION FOR HIM, BUT THEY CANT DECIDE IF THEY TAKE AETNA OR NOT. LONG

STORY, OBVIOUSLY. IHAVE TAKEN THIS MATTER TO THE HEAD OF EI, ANNE LUCAS IN

RICHMOND VA AND NOW a wonderful lady with ARC, Association for Retarded

Citizens. I am making progress.

I am wondering if the helmet is causing the seizure also, garret also does

the shiver thing and now when sucking his bottle he quivers his tongue when

he stops sucking to breath and rolls his eyes almost the entire time while

sucking, after leaving the ER yesterday we are now waiting to see the

Neurologist next week and draw a blood level. Very stressful. I cant stop

crying. I cant understand why all these bad things are happening to us and

this helpless baby. I know the medicine makes him feel bad, he just looks at

you while you give it and in his eyes you can see him saying " why? " It is so

awful and then within an hour he is sedated and sleeps soundly my husband

just got off the phone with the oncall ped about his respirations of 28 and

periods of apnea, they arent concerned. Needless to say we are not allowing

him to sleep with the helmet because of this and thursday am (valentines

morning) we found him sleeping face down and arms out like a plane, it was

like he was stuck and he is having troulbe rolling but he does just fine in

the daytime, so we are taking no chances of him laying face down again. Last

night he didnt wear the helmet and when we checked on him he was laying fine

with his head facing to the side when he was on his belly. BYW, this is the

first time Valentimes eve that he rolled in his sleep. (7 1/2 months)

My husband and I are very worried this helmet is causing this. We have asked

the ped. and showed her that when you feed with a bottle and hold him, the

bottom of the band pushes into the back of his neck. I dont know if it is

coincidence but 1) both times the seizures occured while feeding hime, 2)

with the band pushing into his neck

i dont know but we really hate the band and want to end this. We are

expected to have him in it til May. I dont know if I can take more.

Watch your babies.

Sommer-Campos

>From: " abbygator49509 " <dj2kirby@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: POSSIBLE SEIZURE ALERT

>Date: Sun, 10 Feb 2002 17:47:20 -0000

>

>Lori:

>Welcome to our group. How scary all of this must be right now with

>the seizures. I haven't heard of helmets or bands ever causing any

>types of seizures. Have you had any type of other tests to possibly

>find out what could be causing these seizures? You did say he had an

>MRI which showed no brain tumor (thank God), but are there other

>tests that can be done? You must be a nervous wreck.

>I agree with Niki, has he had a CTscan done ever to rule out

>craniosynostosis? If not, then that would be a good idea.

>Debbie Abby's mom

>MI

>

>

>

>

> > My 16 month old son has been wearing a helmet for 6 months with OK

>progress.

> > Like many others, we were told his head would pop out. We recieved

>his

> > helmet at 10 months. He will wear it another 7. Long journey.

>Two weeks

> > ago, he woke up from his nap, and heat was radiating from the holes

>in the

> > helmet. Not warm, but absolutely HOT. About two minutes later, he

>had a

> > seizure. Thank God not a grandmal seizure, a focal seizure, which

>looks like

> > he has a shiver. He then proceeded to have 2 more. Within the

>hour we were

> > at Children's Hospital in Seattle and having an EEG, which

>confirmed the

> > seizures. He had a MRI the next day to rule out a brain tumor. He

>had about

> > 50 seizures in 5 days, and has not had any more in about 9. He is

>on an

> > anti-seizure medication which has produced no side effects so far.

>Of course

> > my first question was about the helmet, and 5 neurologists assured

>me it was

> > not because of the helmet. I can't help but correlate the heat

>coming out of

> > the holes to the seizure. I don't mean to frighten anyone, his

>helmet is

> > back on, but has anyone heard of this before? Lori.

>

_________________________________________________________________

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[Guest guest]

Hi, again. I forgot to say I do agree with you also about the heat! To make

us appreciate the freeness that we have, we need to wear a fleece stocking

hat on our heads 23 hours a day. Body heat escapes through our heads, and if

it cant, well it heats it up, but is it enough to cause a seizure? i dont

know, but we know that temp cause seizures so the helmet causes the same

environment, a temperature. my input, you can call me Kim. How is your son?

What med is he on? does he take it? your response is so reassuring that I am

not the only one looking for answers. Thank you, Kim

>From: lancerunje@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Re: POSSIBLE SEIZURE ALERT

>Date: Sat, 16 Feb 2002 02:17:43 EST

>

>Hello. I am the one who posted about the seizures. From what I have read,

>why I think the helmet could have caused the seizures is different why you

>do. I think that the heat that the helmet produced the day of his first

>seizure was why. It was unbelievable. His head has been of course hot

>before, but nothing like it was that day. Funny thing is, is that we live

>in

>Seattle where it rarely snows, and there was a snow storm that day. It's

>not

>like we live in a warm climate. Anyway, I'm sorry what you are going

>through, I know what it is like to feel helpless. We have continued with

>the

>helmet, along with his anti-seizure medication, and we will see what

>happens.

> My thoughts and prayers are with you.

_________________________________________________________________

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[Guest guest]

:

I am very sorry to hear of all of the difficulties Garrett is having. Your

family will be in my thoughts and prayers. I certainly hope the DOC band is

not causing it, but more importantly, I hope the specialists are able to

identify WHAT IS causing it.

Regarding EI, I am surprised to hear that acceptance was based on your

insurance. Here in Ohio, EI is free of charge and we were never asked for

insurance information.

Sending lots of prayers,

Sue

Cleveland, OH

Re: POSSIBLE SEIZURE ALERT

> >Date: Sun, 10 Feb 2002 17:47:20 -0000

> >

> >Lori:

> >Welcome to our group. How scary all of this must be right now with

> >the seizures. I haven't heard of helmets or bands ever causing any

> >types of seizures. Have you had any type of other tests to possibly

> >find out what could be causing these seizures? You did say he had an

> >MRI which showed no brain tumor (thank God), but are there other

> >tests that can be done? You must be a nervous wreck.

> >I agree with Niki, has he had a CTscan done ever to rule out

> >craniosynostosis? If not, then that would be a good idea.

> >Debbie Abby's mom

> >MI

> >

> >

> >

> >

> > > My 16 month old son has been wearing a helmet for 6 months with OK

> >progress.

> > > Like many others, we were told his head would pop out. We recieved

> >his

> > > helmet at 10 months. He will wear it another 7. Long journey.

> >Two weeks

> > > ago, he woke up from his nap, and heat was radiating from the holes

> >in the

> > > helmet. Not warm, but absolutely HOT. About two minutes later, he

> >had a

> > > seizure. Thank God not a grandmal seizure, a focal seizure, which

> >looks like

> > > he has a shiver. He then proceeded to have 2 more. Within the

> >hour we were

> > > at Children's Hospital in Seattle and having an EEG, which

> >confirmed the

> > > seizures. He had a MRI the next day to rule out a brain tumor. He

> >had about

> > > 50 seizures in 5 days, and has not had any more in about 9. He is

> >on an

> > > anti-seizure medication which has produced no side effects so far.

> >Of course

> > > my first question was about the helmet, and 5 neurologists assured

> >me it was

> > > not because of the helmet. I can't help but correlate the heat

> >coming out of

> > > the holes to the seizure. I don't mean to frighten anyone, his

> >helmet is

> > > back on, but has anyone heard of this before? Lori.

> >

>

>

>

>

>

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

>

> For more plagio info

[Guest guest]

Hello Kim. My name is Lori. Nice to meet you. My son is on Zonegran. It is the newest anti-seizure medication. It is the pill form, so every morning we put it in his milk and he does not even notice it. The other name for it is Zanisamide-not sure about the spelling. Maybe you could look into a pill form of medication. My son has been diagnosed with benign myoclonic seizures, which he will probably outgrow. They are mostly genetic, which seizures seem to run in my husbands family. He had these seizures for 3 days straight, and they seemed to stop before his medication was even started. These type of seizures usually happen upon awakening. I know how you are feeling, it is very scary to hear the words seizure. Know that there are other types of drugs, 13 I have heard. Anyway, I hope it helps to know that there are other mothers going through scary times and this is exactly what these support groups are for. bye. Lori

[Guest guest]

Sue, thank you for your reply, I apologize for not writing earlier, I only

get to see the internet on the weekends. Garrett is doing well and adjusting

to the sedating effects of Phenobarbital. We dont know what is causing the

seizures, but we had his blood drawn on 2/21 for cbc, chem panel, and

thyroid tests and phenobarb level. We see the neurologist this weds 2/27 for

his input and a sheet full of questions. \

In regards to the DOC band Tim Littlefield did his research and saw no

correlation of seizures and the DOC band, so good news'

Take care

Sommer-Campos

>From: " msluck " <msluck@...>

>Reply-Plagiocephaly

><Plagiocephaly >

>Subject: Re: Re: POSSIBLE SEIZURE ALERT

>Date: Sat, 16 Feb 2002 14:00:16 -0500

>

>:

>I am very sorry to hear of all of the difficulties Garrett is having. Your

>family will be in my thoughts and prayers. I certainly hope the DOC band

>is

>not causing it, but more importantly, I hope the specialists are able to

>identify WHAT IS causing it.

>

>Regarding EI, I am surprised to hear that acceptance was based on your

>insurance. Here in Ohio, EI is free of charge and we were never asked for

>insurance information.

>

>Sending lots of prayers,

>Sue

>Cleveland, OH

>

>

> Re: POSSIBLE SEIZURE ALERT

> > >Date: Sun, 10 Feb 2002 17:47:20 -0000

> > >

> > >Lori:

> > >Welcome to our group. How scary all of this must be right now with

> > >the seizures. I haven't heard of helmets or bands ever causing any

> > >types of seizures. Have you had any type of other tests to possibly

> > >find out what could be causing these seizures? You did say he had an

> > >MRI which showed no brain tumor (thank God), but are there other

> > >tests that can be done? You must be a nervous wreck.

> > >I agree with Niki, has he had a CTscan done ever to rule out

> > >craniosynostosis? If not, then that would be a good idea.

> > >Debbie Abby's mom

> > >MI

> > >

> > >

> > >

> > >

> > > > My 16 month old son has been wearing a helmet for 6 months with OK

> > >progress.

> > > > Like many others, we were told his head would pop out. We recieved

> > >his

> > > > helmet at 10 months. He will wear it another 7. Long journey.

> > >Two weeks

> > > > ago, he woke up from his nap, and heat was radiating from the holes

> > >in the

> > > > helmet. Not warm, but absolutely HOT. About two minutes later, he

> > >had a

> > > > seizure. Thank God not a grandmal seizure, a focal seizure, which

> > >looks like

> > > > he has a shiver. He then proceeded to have 2 more. Within the

> > >hour we were

> > > > at Children's Hospital in Seattle and having an EEG, which

> > >confirmed the

> > > > seizures. He had a MRI the next day to rule out a brain tumor. He

> > >had about

> > > > 50 seizures in 5 days, and has not had any more in about 9. He is

> > >on an

> > > > anti-seizure medication which has produced no side effects so far.

> > >Of course

> > > > my first question was about the helmet, and 5 neurologists assured

> > >me it was

> > > > not because of the helmet. I can't help but correlate the heat

> > >coming out of

> > > > the holes to the seizure. I don't mean to frighten anyone, his

> > >helmet is

> > > > back on, but has anyone heard of this before? Lori.

> > >

> >

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > Send and receive Hotmail on your mobile device: http://mobile.msn.com

> >

> >

> >

> > For more plagio info

[Guest guest]

Lori, Hi thanks for responding. WE have put Garrett phenobarb in his bottles

and he drinks it nicely and is adjusting to the meds, not sedating so fast

and he doesnt look so nauseated after it. We are getting his blood work done

on 2/21 phenobarb level, cbc chem panel and I made them do thyroid tests.

Just have to wait for the results. I wish your son well and thank you. We

meet with the neurologist on wed 2/27 to discuss his plan of care for the

next couple months, years.

Thank you again

Sommer-Campos

>From: lancerunje@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Re: POSSIBLE SEIZURE ALERT

>Date: Sat, 16 Feb 2002 20:05:56 EST

>

>Hello Kim. My name is Lori. Nice to meet you. My son is on

>Zonegran. It is the newest anti-seizure medication. It is the pill form,

>so

>every morning we put it in his milk and he does not even notice it. The

>other name for it is Zanisamide-not sure about the spelling. Maybe you

>could

>look into a pill form of medication. My son has been diagnosed with benign

>myoclonic seizures, which he will probably outgrow. They are mostly

>genetic,

>which seizures seem to run in my husbands family. He had these seizures

>for

>3 days straight, and they seemed to stop before his medication was even

>started. These type of seizures usually happen upon awakening. I know how

>you are feeling, it is very scary to hear the words seizure. Know that

>there

>are other types of drugs, 13 I have heard. Anyway, I hope it helps to know

>that there are other mothers going through scary times and this is exactly

>what these support groups are for. bye. Lori

_________________________________________________________________

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