Re: seizures

[Guest guest]

My son is 3.5 and had his first seizure at 2.5. He might have had them sooner but we are slow/no vax people so he hasn't been as exposed to them as other kids. We are cautious due to relatives with seizure issues.

His first seizure we thought was due to a fall off the couch but after 2 more seizures last year with sudden, small temp spikes, we've put him in the " febrile seizure " category (reg temp ~ 97 degrees, lowest seizure temp 99 degrees) (The first seizure likely happened, and THEN he fell... he had a fever and sinus infection which went un-noticed by me due to his seasonal allergies)

My son has not been dx'd with anything else; his sister is high-functioning/asperger's (she is 5; never had a seizure)The first seizure is SO SCARY. My husband actually told me " Call 911, he's dead, he's broke his neck " after he fell. I will forever hear those words daily ringing in my head, thank you very much dear husband !!! :-O

I would say it get's better... but I don't know. My reaction to the seizures is much calmer and yes, THAT is better, I don't think he's dying when one happens. But I still worry A LOT and I sleep in his room A LOT too. :-( (His seizure in Oct 2009 happened in the middle of the night when he was sleeping; had I not been there I wouldn't have known, I just happened to lay down with him that night)

Anyway, this might all be irrelevant, as my son is not on any medications. I am just sharing that yes, we deal with the fear of seizures. :::hugs:::PS I think low B vitamins is related to seizure disorders, so we have just started supp. B vits now (within the last month) and we just got scheduled for a 24 hr videoed EEG.

 

My son age 5 had a seizure last sunday night.. its the first one he has ever had..we went yesterday for a ct and an eeg. has anybody else experienced this.. i'm scared to death..

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Yes...it is so normal to feel the way that you do. My daughter has had the

small/absence and urine accident seizures since she was little (we didn't know

until she was 5 though because they usually happened at night while sleeping),

but it explained why she would wake up at night on occasion. She has since had

grand mals from time to time (very hard to watch...I was laying next to her on

my bed when she had her first one). It has been almost 2 years since she was

diagnosed with them (she is on Lamictal (generic)), but it took me some time to

connect the dots...the grand mals that have occurred since have occurred as a

reaction to her sequential homeopathy. (we have been doing this longer than her

diagnosis) The way that we had hers diagnosed was through a sleep deprived

EEG....the preparation is tough...but it is the best way to diagnose. You

aren't alone...there are many of us with kids with seizures...it takes time to

get used to them. (seizures do not run in my family...so it was very new to us)

All my best, Tricia

>

> My son age 5 had a seizure last sunday night.. its the first one he has ever

had..we went yesterday for a ct and an eeg. has anybody else experienced this..

i'm scared to death..

>

[Guest guest]

i was laying in bed with bailey also when he had his.. it was horrible he turned blue his head fell back and his eyes were open but focused on nothing... it seemed to last for eternity.. but i think it was more like 3 or 4 minutes.. can you tell me a little about the meds your child takes.. we are trying to decide whether to medicate just yet or not..

Subject: Re: seizuresTo: mb12 valtrex Date: Wednesday, March 10, 2010, 7:20 PM

Yes...it is so normal to feel the way that you do. My daughter has had the small/absence and urine accident seizures since she was little (we didn't know until she was 5 though because they usually happened at night while sleeping), but it explained why she would wake up at night on occasion. She has since had grand mals from time to time (very hard to watch...I was laying next to her on my bed when she had her first one). It has been almost 2 years since she was diagnosed with them (she is on Lamictal (generic)), but it took me some time to connect the dots...the grand mals that have occurred since have occurred as a reaction to her sequential homeopathy. (we have been doing this longer than her diagnosis) The way that we had hers diagnosed was through a sleep deprived EEG....the preparation is tough...but it is the best way to diagnose. You aren't alone...there are many of us with kids with seizures...it takes time to get used to them. (seizures

do not run in my family...so it was very new to us) All my best, Tricia>> My son age 5 had a seizure last sunday night.. its the first one he has ever had..we went yesterday for a ct and an eeg. has anybody else experienced this.. i'm scared to death..>

[Guest guest]

My 9 yr old (who had an intrauterine stroke and has CP as well as Asperger's)

had her first seizure when she was ~ 19months. She had 3 within a year, then

went 2 yrs seizure-free. Since then, she has had 3-6/yr and they've become more

and more subtle (slight nystagmus, drooling and a " quiver " in the muscles in

nostril or around mouth).

I can tell usually 1-3 days prior that a seizure is coming, based on her out of

control, aggressive behavior. Usually when I find myself asking " WTH is wrong

with you?, " there's a seizure on the way. My daughter knows up to 15 min in

advance and always tells me. It's taken 3.5 yrs to get her to the point where

she now tells the school staff. Her triggers are illness (often the 1st sign of

illness is the seizure), stress and lack of sleep. While she's had seizures with

a fever, they're not necessarily *high* fevers (her normal temp is ~ 97.5).

Febrile seizures occur with a *rapid* rise in temp and do not have to come from

104-105* temps.

Initially she was put on Tegretol, but I weaned her off within the 1st 2 months.

We don't use drugs and I didn't like the side effects. The risks of the drugs

were too great(IMO)in light of how infrequent the seizures were. The neuro, of

course, pushes meds whenever we see her. I refused Lamictal because it is NOT

approved for use in single drug therapy in people under 16. I refused Keppra

because we already have enough behavior and aggression problems. Anytime she

recommends a different drug, I head to the Physician's Desk Reference (PDR) at

the local library and look up *ALL* the risks of the drug, rather than trust the

flimsy sheet of info the doc hands me.

*Try to remember that a seizure is the brains way of detoxing. They're still

scary, but serve a purpose.*

In 2006, my daughter began to have auras, averaging 25/day (mostly on their own,

occasionally prior to a seizure. They steadily decreased and about 1-2 months

ago she was averaging <2/day. Since we've been doing the diet and supps (just a

few months) they've come down further than they had in the past year and now she

goes weeks without them. When they flare up again, I've found that if I boost

B12, B6 and Mag I can get them to go away. I've added some additional

supplements (GABA, selenium, CLO) as well as healthy fats such as coconut oil

and avocado. I'm looking into L-Carnosine. Oh and I've also used homeopathy over

the past 8 yrs or so.

Also, very important is to avoid aspartamate and glutamate as they are

excitotoxins. To go low glutamate, in addition to all the hidden MSG, you will

have to remove such items as yeast, peanuts, gelatin and others.

Here are a couple of sites that support supplementation for seizures:

http://www.worldwidehealthcenter.net/articles-115.html

http://www.umm.edu/altmed/articles/seizure-disorders-000148.htm

You can look into castor oil packs (google them and seizures)....I can't

remember the guys name who worked that up, but if I heard it I'd recognize it.

A fellow biomed mom gave me these recommendations when I was dealing with a

burst of auras over several days last week:

" Usually my seizure cocktail is a good 2-5 day rotation of the following:

immediately after a seizure I dose with a b complex( with b1 & b6 !!!!), liver

life for detox, folinic acid( not folic), mb12, high dose magnesium, & You

should see seizures go away pretty fast, and immediate return of focus, etc.

Then...an hr or so later, I add Kirkman's Mito Cell. (which has A-L

Carnitine-great for the brain, CoQ10,biotin, AKA which is great for ridding the

cells of ammonia) , etc & high dose Vit C. ANd during this.... we do several

epsom salt baths. The cream is great to put on the bottom of their feet in

socks.. .

Then... once it has all subsided and we're in the clear of seizure

actiivty(usually a few hours for us), I treat the gut on rotation with high high

dose probtiocs, antifungals, cal-mag, enzymes, aloe, activated charcoal, epsom

salts, etc.

I do nothing else for a good 1-2 weeks, no multis, nothing, except a rigid

bedtime combo of melatonin, low low dose b complex, low dose liver life, & a

enzymes like No FENOL.

It's important not to compound with anything more because the brain seized

because it needed to detox. So adding more stuff will only make it even more

difficult for body to detox. ANd I usually keep Carson home, out of school until

normal function returns. "

The decision to medicate or not is a very important, very personal decision. Do

not let the neuro pressure or rush you into medicating if you are in any way

uncertain. Do your research, question the doc and go from there. Good luck!

Anne

>

> i was laying in bed with bailey also when he had his.. it was horrible  he

turned blue his head fell back and his eyes were open but focused on nothing...

it seemed to last for eternity.. but i think it was more like 3 or 4 minutes..

can you tell me a little about the meds your child takes.. we are trying to

decide whether to medicate just yet or not..

[Guest guest]

*Try to remember that a seizure is the brains way of detoxing. They're still scary, but serve a purpose.*

i am not sure where you are getting this statement but not true! you can have seizers FROM toxins, from food allergies, from high fevers, from nurons misfiring, which isn't from detoxing, it's from exposure TO toxins......the seizer isn't going to relieve the body of the toxin by having a seizer....

it the body protesting telling you something isn't right,.

Re: seizures

My 9 yr old (who had an intrauterine stroke and has CP as well as Asperger's) had her first seizure when she was ~ 19months. She had 3 within a year, then went 2 yrs seizure-free. Since then, she has had 3-6/yr and they've become more and more subtle (slight nystagmus, drooling and a "quiver" in the muscles in nostril or around mouth). I can tell usually 1-3 days prior that a seizure is coming, based on her out of control, aggressive behavior. Usually when I find myself asking "WTH is wrong with you?," there's a seizure on the way. My daughter knows up to 15 min in advance and always tells me. It's taken 3.5 yrs to get her to the point where she now tells the school staff. Her triggers are illness (often the 1st sign of illness is the seizure), stress and lack of sleep. While she's had seizures with a fever, they're not necessarily *high* fevers (her normal temp is ~ 97.5). Febrile seizures occur with a *rapid* rise in temp and do not have to come from 104-105* temps.Initially she was put on Tegretol, but I weaned her off within the 1st 2 months. We don't use drugs and I didn't like the side effects. The risks of the drugs were too great(IMO)in light of how infrequent the seizures were. The neuro, of course, pushes meds whenever we see her. I refused Lamictal because it is NOT approved for use in single drug therapy in people under 16. I refused Keppra because we already have enough behavior and aggression problems. Anytime she recommends a different drug, I head to the Physician's Desk Reference (PDR) at the local library and look up *ALL* the risks of the drug, rather than trust the flimsy sheet of info the doc hands me.*Try to remember that a seizure is the brains way of detoxing. They're still scary, but serve a purpose.*In 2006, my daughter began to have auras, averaging 25/day (mostly on their own, occasionally prior to a seizure. They steadily decreased and about 1-2 months ago she was averaging <2/day. Since we've been doing the diet and supps (just a few months) they've come down further than they had in the past year and now she goes weeks without them. When they flare up again, I've found that if I boost B12, B6 and Mag I can get them to go away. I've added some additional supplements (GABA, selenium, CLO) as well as healthy fats such as coconut oil and avocado. I'm looking into L-Carnosine. Oh and I've also used homeopathy over the past 8 yrs or so.Also, very important is to avoid aspartamate and glutamate as they are excitotoxins. To go low glutamate, in addition to all the hidden MSG, you will have to remove such items as yeast, peanuts, gelatin and others.Here are a couple of sites that support supplementation for seizures:http://www.worldwidehealthcenter.net/articles-115.htmlhttp://www.umm.edu/altmed/articles/seizure-disorders-000148.htmYou can look into castor oil packs (google them and seizures)....I can't remember the guys name who worked that up, but if I heard it I'd recognize it.A fellow biomed mom gave me these recommendations when I was dealing with a burst of auras over several days last week:"Usually my seizure cocktail is a good 2-5 day rotation of the following: immediately after a seizure I dose with a b complex( with b1 & b6 !!!!), liver life for detox, folinic acid( not folic), mb12, high dose magnesium, & You should see seizures go away pretty fast, and immediate return of focus, etc. Then...an hr or so later, I add Kirkman's Mito Cell. (which has A-L Carnitine-great for the brain, CoQ10,biotin, AKA which is great for ridding the cells of ammonia) , etc & high dose Vit C. ANd during this.... we do several epsom salt baths. The cream is great to put on the bottom of their feet in socks.. .Then... once it has all subsided and we're in the clear of seizure actiivty(usually a few hours for us), I treat the gut on rotation with high high dose probtiocs, antifungals, cal-mag, enzymes, aloe, activated charcoal, epsom salts, etc.I do nothing else for a good 1-2 weeks, no multis, nothing, except a rigid bedtime combo of melatonin, low low dose b complex, low dose liver life, & a enzymes like No FENOL.It's important not to compound with anything more because the brain seized because it needed to detox. So adding more stuff will only make it even more difficult for body to detox. ANd I usually keep Carson home, out of school until normal function returns."The decision to medicate or not is a very important, very personal decision. Do not let the neuro pressure or rush you into medicating if you are in any way uncertain. Do your research, question the doc and go from there. Good luck!Anne>> i was laying in bed with bailey also when he had his.. it was horrible he turned blue his head fell back and his eyes were open but focused on nothing... it seemed to last for eternity.. but i think it was more like 3 or 4 minutes.. can you tell me a little about the meds your child takes.. we are trying to decide whether to medicate just yet or not..

[Guest guest]

low taurine can make kids more suseptable to seizers, many on diet groups report them being triggered by gluten and when removed they stop. night seizers can be linked to something called landau kleffner syndrom which can cause loss of gained skills. so knowing that you have seen them at night you might want to read up on that one and see if it sounds like him, however i think they are typically small and you have no idea they are having them...so that may also not be what he has

Re: seizures

My son is 3.5 and had his first seizure at 2.5. He might have had them sooner but we are slow/no vax people so he hasn't been as exposed to them as other kids. We are cautious due to relatives with seizure issues.

His first seizure we thought was due to a fall off the couch but after 2 more seizures last year with sudden, small temp spikes, we've put him in the "febrile seizure" category (reg temp ~ 97 degrees, lowest seizure temp 99 degrees) (The first seizure likely happened, and THEN he fell... he had a fever and sinus infection which went un-noticed by me due to his seasonal allergies)

My son has not been dx'd with anything else; his sister is high-functioning/asperger's (she is 5; never had a seizure)

The first seizure is SO SCARY. My husband actually told me "Call 911, he's dead, he's broke his neck" after he fell. I will forever hear those words daily ringing in my head, thank you very much dear husband !!! :-O

I would say it get's better... but I don't know. My reaction to the seizures is much calmer and yes, THAT is better, I don't think he's dying when one happens. But I still worry A LOT and I sleep in his room A LOT too. :-( (His seizure in Oct 2009 happened in the middle of the night when he was sleeping; had I not been there I wouldn't have known, I just happened to lay down with him that night)

Anyway, this might all be irrelevant, as my son is not on any medications. I am just sharing that yes, we deal with the fear of seizures. :::hugs:::

PS I think low B vitamins is related to seizure disorders, so we have just started supp. B vits now (within the last month) and we just got scheduled for a 24 hr videoed EEG.

On Wed, Mar 10, 2010 at 10:07 AM, Hinshaw <hinshaw.linda> wrote:

My son age 5 had a seizure last sunday night.. its the first one he has ever had..we went yesterday for a ct and an eeg. has anybody else experienced this.. i'm scared to death..

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Many of our children have Seizures. Ours was discovered on

Spect Scan.

Pamela

From:

mb12 valtrex [mailto:mb12 valtrex ] On Behalf

Of Hinshaw

Sent: Wednesday, March 10, 2010 10:08 AM

To: ASD-MS ; mb12 valtrex

Subject: seizures

My son age 5 had a seizure last sunday night.. its the

first one he has ever had..we went yesterday for a ct and an eeg. has anybody

else experienced this.. i'm scared to death..

[Guest guest]

Interesting. My son was dx'd as allergic to wheat, rice, eggs and soy in May 2008. We did not eliminate these right away, but in Fall 2008 we did; In Spring 2009 we had more skin testing done (possibly March 2009) and he tested as not allergic to anything at that point, and we took him off the restricted diet, even though I was skeptical that he lost all those allergies. (I know that sounds really dumb but if you look at the list of allergens, we were having a really hard time keeping him away from ALL of these! Plus it's hard to believe skin testing... I *think* we had blood tests done for the kids to see if they were allergic to wheat since my brother is celiac and they came back negative) He was vax for one thing in March 2009, and approx 2 weeks later had a seizure. I never even thought to link it to being re-exposed to those foods. Right now we have just removed wheat again, not the others. I do try to avoid soy, he doesn't eat eggs except as an ingredient in baked things... rice is what he is most exposed to in baked goods.

Anyway, I will keep this thought in mind.

 

low taurine can make kids more suseptable to seizers, many on diet groups report them being triggered by gluten and when removed they stop.  night seizers can be linked to something called landau kleffner syndrom which can cause loss of gained skills.  so knowing that you have seen them at night you might want to read up on that one and see if it sounds like him, however i think they are typically small and you have no idea they are having them...so that may also not be what he has

 

Re: seizures

 

My son is 3.5 and had his first seizure at 2.5. He might have had them sooner but we are slow/no vax people so he hasn't been as exposed to them as other kids. We are cautious due to relatives with seizure issues.

His first seizure we thought was due to a fall off the couch but after 2 more seizures last year with sudden, small temp spikes, we've put him in the " febrile seizure " category (reg temp ~ 97 degrees, lowest seizure temp 99 degrees) (The first seizure likely happened, and THEN he fell... he had a fever and sinus infection which went un-noticed by me due to his seasonal allergies)

My son has not been dx'd with anything else; his sister is high-functioning/asperger's (she is 5; never had a seizure)

The first seizure is SO SCARY. My husband actually told me " Call 911, he's dead, he's broke his neck " after he fell. I will forever hear those words daily ringing in my head, thank you very much dear husband !!! :-O

I would say it get's better... but I don't know. My reaction to the seizures is much calmer and yes, THAT is better, I don't think he's dying when one happens. But I still worry A LOT and I sleep in his room A LOT too. :-( (His seizure in Oct 2009 happened in the middle of the night when he was sleeping; had I not been there I wouldn't have known, I just happened to lay down with him that night)

Anyway, this might all be irrelevant, as my son is not on any medications. I am just sharing that yes, we deal with the fear of seizures. :::hugs:::

PS I think low B vitamins is related to seizure disorders, so we have just started supp. B vits now (within the last month) and we just got scheduled for a 24 hr videoed EEG.

 

My son age 5 had a seizure last sunday night.. its the first one he has ever had..we went yesterday for a ct and an eeg. has anybody else experienced this.. i'm scared to death..

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

,

Honestly...it is a really big decision...we went ahead and immediately placed

her on meds because she wasn't catching up on her development. I plan to one

day (hopefully) take her off of the meds...we were lucky that the first

medication worked for her, however, Lamictal is a med that can cause Steve

Syndrome (allergic burn rash that can kill if not treated immediately).

Luckily...Emma wasn't allergic to it. Emma is doing really, really well now,

but I think that the sequential homeopathy that we are doing is a big reason why

she is doing well. It really depends on how often is having the seizures

and what you are comfortable with...if he is already having grand mals...then

yes...medication probably would be the right approach. I completely understand

your worry, fear and concern over the seizures. The grand mals that Emma has

had haven't gone over the 5 minute mark (which is when you use the Diastat

Acudial...this is definitely something I recommend keeping on hand...it is

diazepam rectal gel that you give if the seizure goes over 5mins.). We keep

them on hand at school and at home, but haven't had to use it yet...knock on

wood). Her neurologist knows that we are treating her with homeopathy,

biomedical, and supplements...she doesn't totally get it, but is very open

minded compared to some docs.

I wish you all the best with everything for ...I know that it isn't any

easy road...but I promise...it gets better. (I became very used to it all...it

just becomes routine) My dd's teacher thanked us this past Summer...after a

year of experience with Em's seizures...her son had a febrile seizure and she

was very calm, cool and collected. HTH, Tricia

> >

> > My son age 5 had a seizure last sunday night.. its the first one he has ever

had..we went yesterday for a ct and an eeg. has anybody else experienced this..

i'm scared to death..

> >

>