Fwd: FW: What to do about seizures

[Guest guest]

This is info from a friend who's daughter has seizures & has gotten Bethany

off all seizure meds. Some info is local stuff which you can ignore, but I

think there are general seizure info that could be helpful. Hope this helps

some of you already dealing with seizures, but also ones just starting out.

Marie

---------- Forwarded message ----------

Date: Sep 3, 2006 3:28 PM

Subject: FW: What to do about seizures

To: Marie

Marie,

Here is the info I have shared with others. Feel free to post it on the

autism in girls list if you think it is of interest to the folks there.

--Jen

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

We have certainly been around the seizure block once or twice, I'm sorry to

say. I am short on time, so please forgive what may seem like an impersonal

response, but I am going to piece together info from other emails I have

written for support lists and parents who have contacted me. I really want

you to have the info I have to share, and most of all I want your daughter

to be well and you to have relief from the stress the seizures bring.

I tend to write a lot, and you'll see I'm rather opinionated. I hope some

of what I have to say may help you.

--

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

My daughter, Bethany, has had seizures since age 3 - first tonic clonic

occurred then but in retrospect we think she may have had other types of

seizures since an infant. She got her autism diagnosis at age 19 months, but

the seizures were not apparent until later. We've been through a lot with

her, and her seizures are considered " intractable. " They have never been

controlled. She used to average 90 seizures a month - full tonic cloniics,

turning blue, foaming at mouth, vomitting, the works. While her seizures

are still uncontrolled, they have been dramatically reduced. I can tell you

what has made them better, and offer some suggestions that may help your

daughter.

And now comes a long and detailed message. When a child's life is in the

balance, i would rather overwhelm with all I know on this big topic and hope

there is a nugget in there that will make all the difference.

Key actions to take immediately:

- Stop vaccinating, and if the seizures came close after a vaccination,

report them to the Vaccine Adverse Reaction Reporting System (VARRS)

- Stop pesticide exposures, such as spraying your own home

- Look to see if seizure activity correlates with an environmental insult

(cleaning products, pesticides, fragrances, fabric softeners, dry cleaning,

dry erase markers, etc.)

- If meds haven't worked yet, stop them immediately. see comments below.

- Research the Specific Carbohydrate Diet as an immediate dietary

intervention that can dramatically help and cannot hurt.

http://breakingtheviciouscycle.com/ Not promoted as an antiseizure diet, but

many people who tried the keto later had success with SCD.

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

Bethany has a severe seizure disorder, meaning that it has not been

controllable with meds. Most kids who have autism do not have the severe

seizures - they have one or two episodes that are easily controllable with

meds. Even so, I would not advise to go the med route. I will state up front

that I am against meds for just about anything, except in extreme cases and

for short duration (6 months or less). I know, this is not a mainstream

position, but that is where I am today. Meds are toxic and antiseizure meds

have cognitive side effects. If your child already has difficulties with

communication, he/she will not be able to express if he is having foggy

thinking or " can't find a word. " (this is especially true of a 12-month-old

who has not yet developed language!) (we think meds disrupted Bethany's

visual processing development and now she is not progressing in school or

motor skills because she cannot see correctly.)

We had Bethany on about 10 different seizure meds, usually in combos of 2-3

at a time, for 2.5 years. Nothing controlled her seizures, and in hindsight,

I now know that the meds were actually provoking new types of seizures and

increasing the amount of seizures she was having. If your child doesn't

respond to the first three single meds given, it is probable no med will

ever control the seizures. Had we known this, we would not have gone with

meds for as long as we did.

I encourage that all alternatives be exhausted before meds become the

treatment of choice.

Some recommendations:

Do learn about seizures from the Epilepsy Foundation at *

http://epilepsyfoundation.org* <http://epilepsyfoundation.org/>

.. They typically promote meds as the treatment of choice, but that

notwithstanding, they do have good and helpful info about seizures.

There is a video at the Center library that shows different seizure

types. I think it is called Managing Seizures in Children. That was helpful

for me to view when B.'s seizures started. It has also helped me train care

providers and school personnel.

Do be very aware of possible environmental triggers for the seizures. A

number of parents I have helped with seizures have been able to alleviate

" the spells " by altering diet. That is, identifying possible offending foods

and eliminating them. Other environmental causes include pesticide

exposures, fragrances found in perfumes, lotions, hair products, fabric

softener (big one!), dry erase markers (another big one!), everyday

household cleansers or those you might run into at the store, such as a

floor mopped with ammonia, etc. Bethany is sensitive to bus exhaust. That

sort of thing. Today, chemical and pesticide exposures account for the

majority of B.'s seizures. What used to be a random and frightening event

eventually became explicable when we saw the connection to environmental

insults. My personal opinion is that children with autism are especially

susceptible to environmental insults, as something in their detox pathways

is already amiss and hence the autism. We have reduced Bethany's seizures by

90% since taking her off meds, restricting her diet, and changing our

lifestyle to eliminate pesticides and other common household chemicals.

Pesticide exposures are a major trigger for seizures in Bethany and my

friend's daughter. West Nile fogging has been a nightmare for us. You can

get on a mailing list to see when they are spraying in various areas of the

Valley - especially your own neighborhood. You can see if there is a

correlation between seizures and spraying. Web site is:

http://www.maricopa.gov/wnv/ Look for a link to sign up for automated

notification of spraying in your area. Watch what your neighbors are doing,

too. My friend's daughter has a seizure cluster right on schedule with the

neighbor's pest control monthly visit.

(different set of excerpts here)

Bethany has been med free for over two years, and her seizures have been

reduced by 90%. She grew an inch and a half in six weeks as soon as the last

med was discontinued. Then we homeopathically detoxed her of the toxic

effects from the drugs. That is, made a remedy of each med and gave it to

her. It took two years to clear her from the meds. We have also been

chelating (removing mercury and heavy metals) for most of this time.

Here is what my husband and I have learned and concluded from our

experiences. If there is no structural abnormality in the child's brain, or

a birth trauma, or some external, physical factor that can explain the

seizures, a likely cause is environmental/chemical sensitivities and/or

heavy metal toxicity.

A key thing is vaccinations. Although we had chosen not to vaccinate either

of our kids, I know too many kids who have suffered from vaccinations and

done too much research to not say something to you about them. Vaccines

contain heavy metals (aluminum, mercury), poisonous chemicals

(formaldehyde), and potent viruses. While they may save lives from some

diseases, my belief is that they cause chronic illness in the majority of

people, if not now, later in their lives. Some kids are just more fragile

and show the reaction sooner. So if you have not stopped vaccinating

or your other children yet, I urge you to read up on this critical issue and

please, do not vaccinate until you have done the research and can make an

informed choice. You can get waivers/exemptions for school enrollment and

daycare.

The next key thing is the environmental insults. The everyday chemicals that

surround us are often neurotoxins. Pesticides, fabric softener, heating up

food in plastic dishes in the microwave, the whole list I gave above --

neurotoxic and carcinogenic. Do a google search and you'll see how much info

is out there on this! If you have a child, like Bethany, who genetically is

less able to detox herself, then the toxins build up too fast for her body

to handle and the overload results in seizures and autism. In other kids you

might see asthma/allergies, or ADHD, or hives/eczema, or behavioral/rage

disorders. But the cause is the chemical/environmental/metal toxicity. Read

any of the books by Dr. Doris Rapp. *Our Toxic World: A Wakeup Call* is a

great one, as is *Is This Your Child?*

The pieces all finally fit together for me when Bethany, who had not had a

tonic clonic while awake in two years, had one during her first-ever public

bus ride. It happened after we had been waiting by an idling bus for 10

minutes. Boom. She went over when we boarded the bus. I realized in a flash

that breathing the bus exhaust had triggered the seizure. After that

insight, we began to see that what had been random events were actually

predictable reactions to environmental insults. The therapist who reeked of

fabric softener - an hour after she left, a seizure. A trip to the park

where the herbicides had just been sprayed - a seizure. She would have

seizures on the nights when she had spent the day at school. Fewer on the

weekend -- because she was home in a " cleaner " environment. There were

patterns, finally, that we could see.

Watching for patterns in your child is a good thing to do, if you are not

already on this path. What has she been exposed to, what has she eaten, what

has she breathed, what lotion was just put on her, when a seizure occurs?

Reducing chemical exposures is a huge first step. Cleaning up the diet is

another. Beginning a detox program, preferably homeopathic and herbal, comes

after that. Healing the gut, if there are issues (yeast, parasites, etc.).

These are the things that are working for us, and i think they are

reasonable steps to explore if there is no other clear explanation for the

seizures.

--END--

--

Marie

[Guest guest]

Thanks for sending this along.

I agree with some points (especially about

environmental insult, which NO neurologist will cop

to), disagree with others though understand where she

is coming from (meds & cognitive side effects-yes

they're there, but seizures have cognitive side

effects too and it's a what sucks less kind of thing

if the meds don't work ANYWAY). I especially liked

what she said about diet...I'm gluten/corn/pretty much

any grain but rice free, so similar to the SCD but a

bit different...lots of protein and full-fat food, not

a lot of sugar (and NONE of the refined white stuff)

and recently discovered that I'm in mild ketosis. It's

been 6 months since I had a non-triggered seizure.

Coincidence? I don't think so.

I feel dumb for not mentioning diet when it came up. I

blame the cognitive side effects of my (THREE)

antiseizure meds. *grin*

Kassiane

--- Marie wrote:

> This is info from a friend who's daughter has

> seizures & has gotten Bethany

> off all seizure meds. Some info is local stuff

> which you can ignore, but I

> think there are general seizure info that could be

> helpful. Hope this helps

> some of you already dealing with seizures, but also

> ones just starting out.

>

> Marie

>

> ---------- Forwarded message ----------

> From: Lawrence, A

>

> Date: Sep 3, 2006 3:28 PM

> Subject: FW: What to do about seizures

> To: Marie

>

>

> Marie,

> Here is the info I have shared with others. Feel

> free to post it on the

> autism in girls list if you think it is of interest

> to the folks there.

>

> --Jen

>

> ------------------------------

> We have certainly been around the seizure block

> once or twice, I'm sorry to

> say. I am short on time, so please forgive what may

> seem like an impersonal

> response, but I am going to piece together info from

> other emails I have

> written for support lists and parents who have

> contacted me. I really want

> you to have the info I have to share, and most of

> all I want your daughter

> to be well and you to have relief from the stress

> the seizures bring.

>

> I tend to write a lot, and you'll see I'm rather

> opinionated. I hope some

> of what I have to say may help you.

>

> --

> ----------------------------

>

> My daughter, Bethany, has had seizures since age 3 -

> first tonic clonic

> occurred then but in retrospect we think she may

> have had other types of

> seizures since an infant. She got her autism

> diagnosis at age 19 months, but

> the seizures were not apparent until later. We've

> been through a lot with

> her, and her seizures are considered " intractable. "

> They have never been

> controlled. She used to average 90 seizures a month

> - full tonic cloniics,

> turning blue, foaming at mouth, vomitting, the

> works. While her seizures

> are still uncontrolled, they have been dramatically

> reduced. I can tell you

> what has made them better, and offer some

> suggestions that may help your

> daughter.

>

> And now comes a long and detailed message. When a

> child's life is in the

> balance, i would rather overwhelm with all I know on

> this big topic and hope

> there is a nugget in there that will make all the

> difference.

>

> Key actions to take immediately:

>

> - Stop vaccinating, and if the seizures came

> close after a vaccination,

> report them to the Vaccine Adverse Reaction

> Reporting System (VARRS)

> - Stop pesticide exposures, such as spraying your

> own home

> - Look to see if seizure activity correlates with

> an environmental insult

> (cleaning products, pesticides, fragrances, fabric

> softeners, dry cleaning,

> dry erase markers, etc.)

> - If meds haven't worked yet, stop them

> immediately. see comments below.

> - Research the Specific Carbohydrate Diet as an

> immediate dietary

> intervention that can dramatically help and cannot

> hurt.

> http://breakingtheviciouscycle.com/ Not promoted as

> an antiseizure diet, but

> many people who tried the keto later had success

> with SCD.

>

> ----------------------------------

>

> Bethany has a severe seizure disorder, meaning that

> it has not been

> controllable with meds. Most kids who have autism do

> not have the severe

> seizures - they have one or two episodes that are

> easily controllable with

> meds. Even so, I would not advise to go the med

> route. I will state up front

> that I am against meds for just about anything,

> except in extreme cases and

> for short duration (6 months or less). I know, this

> is not a mainstream

> position, but that is where I am today. Meds are

> toxic and antiseizure meds

> have cognitive side effects. If your child already

> has difficulties with

> communication, he/she will not be able to express if

> he is having foggy

> thinking or " can't find a word. " (this is especially

> true of a 12-month-old

> who has not yet developed language!) (we think meds

> disrupted Bethany's

> visual processing development and now she is not

> progressing in school or

> motor skills because she cannot see correctly.)

>

> We had Bethany on about 10 different seizure meds,

> usually in combos of 2-3

> at a time, for 2.5 years. Nothing controlled her

> seizures, and in hindsight,

> I now know that the meds were actually provoking new

> types of seizures and

> increasing the amount of seizures she was having. If

> your child doesn't

> respond to the first three single meds given, it is

> probable no med will

> ever control the seizures. Had we known this, we

> would not have gone with

> meds for as long as we did.

>

> I encourage that all alternatives be exhausted

> before meds become the

> treatment of choice.

>

> Some recommendations:

>

> Do learn about seizures from the Epilepsy Foundation

> at *

> http://epilepsyfoundation.org*

> <http://epilepsyfoundation.org/>

> . They typically promote meds as the treatment of

> choice, but that

> notwithstanding, they do have good and helpful info

> about seizures.

>

> There is a video at the Center library that

> shows different seizure

> types. I think it is called Managing Seizures in

> Children. That was helpful

> for me to view when B.'s seizures started. It has

> also helped me train care

> providers and school personnel.

>

> Do be very aware of possible environmental triggers

> for the seizures. A

> number of parents I have helped with seizures have

> been able to alleviate

> " the spells " by altering diet. That is, identifying

> possible offending foods

> and eliminating them. Other environmental causes

> include pesticide

> exposures, fragrances found in perfumes, lotions,

> hair products, fabric

> softener (big one!), dry erase markers (another big

> one!), everyday

> household cleansers or those you might run into at

> the store, such as a

> floor mopped with ammonia, etc. Bethany is sensitive

> to bus exhaust. That

> sort of thing. Today, chemical and pesticide

> exposures account for the

> majority of B.'s seizures. What used to be a random

> and frightening event

> eventually became explicable when we saw the

> connection to environmental

> insults. My personal opinion is that children with

> autism are especially

> susceptible to environmental insults, as something

> in their detox pathways

> is already amiss and hence the autism. We have

> reduced Bethany's seizures by

> 90% since taking her off meds, restricting her diet,

> and changing our

> lifestyle to eliminate pesticides and other common

> household chemicals.

>

> Pesticide exposures are a major trigger for seizures

> in Bethany and my

> friend's daughter. West Nile fogging has been a

> nightmare for us. You can

> get on a mailing list to see when they are spraying

> in various areas of the

> Valley - especially your own neighborhood. You can

> see if there is a

> correlation between seizures and spraying. Web site

> is:

> http://www.maricopa.gov/wnv/ Look for a link to sign

> up for automated

> notification of spraying in your area. Watch what

> your neighbors are doing,

> too. My friend's daughter has a seizure cluster

> right on schedule with the

> neighbor's pest control monthly visit.

>

> (different set of excerpts here)

> Bethany has been med free for over two years, and

> her seizures have been

> reduced by 90%. She grew an inch and a half in six

> weeks as soon as the last

> med was discontinued. Then we homeopathically

> detoxed her of the toxic

> effects from the drugs. That is, made a remedy of

> each med and gave it to

> her. It took two years to clear her from the meds.

> We have also been

> chelating (removing mercury and heavy metals) for

> most of this time.

>

> Here is what my husband and I have learned and

> concluded from our

> experiences. If there is no structural abnormality

> in the child's brain, or

> a birth trauma, or some external, physical factor

> that can explain the

> seizures, a likely cause is environmental/chemical

> sensitivities and/or

> heavy metal toxicity.

>

> A key thing is vaccinations. Although we had chosen

> not to vaccinate either

> of our kids, I know too many kids who have suffered

> from vaccinations and

> done too much research to not say something to you

> about them. Vaccines

> contain heavy metals (aluminum, mercury), poisonous

> chemicals

> (formaldehyde), and potent viruses. While they may

> save lives from some

> diseases, my belief is that they cause chronic

> illness in the majority of

> people, if not now, later in their lives. Some kids

> are just more fragile

> and show the reaction sooner. So if you have not

> stopped vaccinating

> or your other children yet, I urge you to read up on

> this critical issue and

> please, do not vaccinate until you have done the

> research and can make an

> informed choice. You can get waivers/exemptions for

> school enrollment and

> daycare.

>

> The next key thing is the environmental insults. The

> everyday chemicals that

> surround us are often neurotoxins. Pesticides,

> fabric softener, heating up

> food in plastic dishes in the microwave, the whole

> list I gave above --

> neurotoxic and carcinogenic. Do a google search and

> you'll see how much info

> is out there on this! If you have a child, like

> Bethany, who genetically is

> less able to detox herself, then the toxins build up

> too fast for her body

> to handle and the overload results in seizures and

> autism. In other kids you

> might see asthma/allergies, or ADHD, or

> hives/eczema, or behavioral/rage

> disorders. But the cause is the

> chemical/environmental/metal toxicity. Read

> any of the books by Dr. Doris Rapp. *Our Toxic

> World: A Wakeup Call* is a

> great one, as is *Is This Your Child?*

>

> The pieces all finally fit together for me when

> Bethany, who had not had a

> tonic clonic while awake in two years, had one

> during her first-ever public

> bus ride. It happened after we had been waiting by

> an idling bus for 10

> minutes. Boom. She went over when we boarded the

> bus. I realized in a flash

> that breathing the bus exhaust had triggered the

> seizure. After that

> insight, we began to see that what had been random

> events were actually

> predictable reactions to environmental insults. The

> therapist who reeked of

> fabric softener - an hour after she left, a seizure.

> A trip to the park

> where the herbicides had just been sprayed - a

> seizure. She would have

> seizures on the nights when she had spent the day at

> school. Fewer on the

> weekend -- because she was home in a " cleaner "

> environment. There were

> patterns, finally, that we could see.

>

> Watching for patterns in your child is a good thing

> to do, if you are not

> already on this path. What has she been exposed to,

> what has she eaten, what

> has she breathed, what lotion was just put on her,

> when a seizure occurs?

> Reducing chemical exposures is a huge first step.

> Cleaning up the diet is

> another. Beginning a detox program, preferably

> homeopathic and herbal, comes

> after that. Healing the gut, if there are issues

> (yeast, parasites, etc.).

> These are the things that are working for us, and i

> think they are

> reasonable steps to explore if there is no other

> clear explanation for the

> seizures.

>

> --END--

>

>

>

> --

> Marie

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________