Re: Help! Need advice for seizures

[Guest guest]

No, he is not on SCD. You're correct that avoiding gluten and startches

would help but

there are other factors. He doesn't think he has Celiac although I suspect

that he does.

After the first seizure, his pediatrician recommended that he get more rest

and sleep at

night, preferably eight or nine hours and to cease playing video games. He

no longer

plays any video games but in both seizures he was sleep deprived. He is a

very physically active person and sometimes doesn't get enough sleep depending

on activities he's

involved in. Sleep deprivation, I have learned is critical to help control

seizures. My son

also thinks that if he gets enough sleep, he can control the seizures without

the diet. He

doesn't really know the science behind the diet like I do and I don't think

he wants to

understand it right now. SCD requires such vigilance that I'm not sure he

would stay on it.

The teen years are tough because they are constantly on the go with school,

sports, and

family/friends and social activities. This probably would be easier to

manage if he was

younger and had to grow up dealing with the diet rather than at this time in

his life.

If I could convince him through other people's experiences then maybe he

might be

willing to do the diet. But given a choice, he would probably rather be on a

gluten-free

diet but it most likely won't control seizures because it allows certain

startches and

sugar. It's a difficult situation either way. Thanks for your thoughts,

Marilyn.

[Guest guest]

No, he is not on SCD. You're correct that avoiding gluten and startches

would help but

there are other factors. He doesn't think he has Celiac although I suspect

that he does.

After the first seizure, his pediatrician recommended that he get more rest

and sleep at

night, preferably eight or nine hours and to cease playing video games. He

no longer

plays any video games but in both seizures he was sleep deprived. He is a

very physically active person and sometimes doesn't get enough sleep depending

on activities he's

involved in. Sleep deprivation, I have learned is critical to help control

seizures. My son

also thinks that if he gets enough sleep, he can control the seizures without

the diet. He

doesn't really know the science behind the diet like I do and I don't think

he wants to

understand it right now. SCD requires such vigilance that I'm not sure he

would stay on it.

The teen years are tough because they are constantly on the go with school,

sports, and

family/friends and social activities. This probably would be easier to

manage if he was

younger and had to grow up dealing with the diet rather than at this time in

his life.

If I could convince him through other people's experiences then maybe he

might be

willing to do the diet. But given a choice, he would probably rather be on a

gluten-free

diet but it most likely won't control seizures because it allows certain

startches and

sugar. It's a difficult situation either way. Thanks for your thoughts,

Marilyn.

[Guest guest]

No, he is not on SCD. You're correct that avoiding gluten and startches

would help but

there are other factors. He doesn't think he has Celiac although I suspect

that he does.

After the first seizure, his pediatrician recommended that he get more rest

and sleep at

night, preferably eight or nine hours and to cease playing video games. He

no longer

plays any video games but in both seizures he was sleep deprived. He is a

very physically active person and sometimes doesn't get enough sleep depending

on activities he's

involved in. Sleep deprivation, I have learned is critical to help control

seizures. My son

also thinks that if he gets enough sleep, he can control the seizures without

the diet. He

doesn't really know the science behind the diet like I do and I don't think

he wants to

understand it right now. SCD requires such vigilance that I'm not sure he

would stay on it.

The teen years are tough because they are constantly on the go with school,

sports, and

family/friends and social activities. This probably would be easier to

manage if he was

younger and had to grow up dealing with the diet rather than at this time in

his life.

If I could convince him through other people's experiences then maybe he

might be

willing to do the diet. But given a choice, he would probably rather be on a

gluten-free

diet but it most likely won't control seizures because it allows certain

startches and

sugar. It's a difficult situation either way. Thanks for your thoughts,

Marilyn.

[Guest guest]

Oh my! Thank you so much, for your post. This is exactly the type of

evidence

and/or experience I've been searching for. The episode you described from

the Discovery

Health Channel sounds very similiar to what we've experienced. However, our

pediatrician

is open and not closed-minded. Many people do not know about Celiac Disease

so this

is unusual that it could actually be on TV. I will try to contact them to

see if I can purchase

a copy of the episode that you described. I believe they sell copies. It

would be beneficial for my son to see what happens during a seizure because it

is scary. Also, it is important

that they don't get hurt during a seizure.

Yes, you're right about getting a Celiac panel done. That's our next step.

Then if the test

comes back positive, it is going to be very difficult to keep him on the

diet. I'm open to

suggestions anyone may have on this, especially in regards to school and

social situations.

Thanks again for sharing that information with me. That helps so much.

Melodye

[Guest guest]

Oh my! Thank you so much, for your post. This is exactly the type of

evidence

and/or experience I've been searching for. The episode you described from

the Discovery

Health Channel sounds very similiar to what we've experienced. However, our

pediatrician

is open and not closed-minded. Many people do not know about Celiac Disease

so this

is unusual that it could actually be on TV. I will try to contact them to

see if I can purchase

a copy of the episode that you described. I believe they sell copies. It

would be beneficial for my son to see what happens during a seizure because it

is scary. Also, it is important

that they don't get hurt during a seizure.

Yes, you're right about getting a Celiac panel done. That's our next step.

Then if the test

comes back positive, it is going to be very difficult to keep him on the

diet. I'm open to

suggestions anyone may have on this, especially in regards to school and

social situations.

Thanks again for sharing that information with me. That helps so much.

Melodye

[Guest guest]

Is he now on SCD? If the seizures were caused by celiac, wouldn't staying

away from gluten, and other starches help? From what you've written, that

might be a first step, and of course the best case scenario would be that if

he stayed on the diet, he would never have another seizure. It sounds like

it would be worth a try.

Just my thoughts,

Marilyn

leaky gut, low thyroid/adrenal, SCD 3 weeks

Help! Need advice for seizures

> Hello! I have been on the listserve for a while since I have Celiac

> Disease

> but I am writing

> about my 15 yr. old son. In August 2005 (right before school started), he

> had his first

> seizure. I believe it was the grand mal type from descriptions I've read

> about. This was

> the first time I had witnessed someone have a seizure. It was scary and

> heartbreaking.

> He was taken by ambulance to the hospital for evaluation and testing. He

> had

> many tests

> done including: urine sample, EKG, CAT scan, and EEG. He never had any

> seizures until

> this time so the doctors felt that perhaps it was an isolated event. My

> husband and I did

> not want to put him on meds either.

>

> As you might suspect, he has now suffered a second seizure this month. I

> am

> distressed

> that it happened again. I have learned from researching on the web, that

> one

> of the symptoms of Celiac can be seizures! Do any parents have advice to

> give

> me about whether

> he should be put on meds or can the SCD diet control it? Of course, we

> want

> to do what is

> best for him but most of these drugs have bad side effects, don't they?

> Also

> he is in his first year of high school and has subjects which require

> strict

> attention in class. He usually has

> a good deal of homework to do as well.

>

> I apologize for the lengthly e-mail but I really could use some advice.

>

> TIA

> Melodye

>

>

>

>

[Guest guest]

I saw an episope on Discovery health last night about a little boy

who was have seizure like episodes. No doctors had ever witnessed

the strange things that he was doing (eyes rolling, tounge clicking

and unresponsive) and she had a hard time convincing the doctors

something was wrong. So the mom video taped it and showed the doctors.

The mother was also celiac but was told by her doctors that passing

it onto a child would be rare. So she had been a " good mom " and made

sure the entire family minus herself ate plenty of whole grains

everyday.

To make a long story short, It turns out the littel boy had severe

celiac disease and the seizures were being caused by malnutrition

since he was unable to absorb the required nutrients for his body to

function.

If I were you, I would get the celiac test done to rule this out (or

in). And eliminate gluten. If he does have celiac he may need to go

SCD to heal his gut so he can absorb nutrients again (if that is the

problem.) THEN if nothing comes of the celiac test I would thing

about seizures meds because yes most of them do have many side

effects. They're purpose is to control electrical brain signals and

most do this by slowing them down which can make to person sleepy and

make it harder to concentrate.

Hope this helps.

mother of Caden 2.5 years SCD since 2/05 and Emmalynn 10.5

months 10.5 months

>

> Hello! I have been on the listserve for a while since I have

Celiac Disease

> but I am writing

> about my 15 yr. old son. In August 2005 (right before school

started), he

> had his first

> seizure. I believe it was the grand mal type from descriptions

I've read

> about. This was

> the first time I had witnessed someone have a seizure. It was

scary and

> heartbreaking.

> He was taken by ambulance to the hospital for evaluation and

testing. He had

> many tests

> done including: urine sample, EKG, CAT scan, and EEG. He never had

any

> seizures until

> this time so the doctors felt that perhaps it was an isolated

event. My

> husband and I did

> not want to put him on meds either.

>

> As you might suspect, he has now suffered a second seizure this

month. I am

> distressed

> that it happened again. I have learned from researching on the

web, that one

> of the symptoms of Celiac can be seizures! Do any parents have

advice to give

> me about whether

> he should be put on meds or can the SCD diet control it? Of

course, we want

> to do what is

> best for him but most of these drugs have bad side effects, don't

they? Also

> he is in his first year of high school and has subjects which

require strict

> attention in class. He usually has

> a good deal of homework to do as well.

>

> I apologize for the lengthly e-mail but I really could use some

advice.

>

> TIA

> Melodye

>

>

>

>

[Guest guest]

>

> Hello! I have been on the listserve for a while since I have Celiac Disease

> but I am writing

> about my 15 yr. old son. In August 2005 (right before school started), he

> had his first

> seizure. I believe it was the grand mal type from descriptions I've read

> about. This was

> the first time I had witnessed someone have a seizure. It was scary and

> heartbreaking.

> He was taken by ambulance to the hospital for evaluation and testing. He had

> many tests

> done including: urine sample, EKG, CAT scan, and EEG. He never had any

> seizures until

> this time so the doctors felt that perhaps it was an isolated event. My

> husband and I did

> not want to put him on meds either.

>

> As you might suspect, he has now suffered a second seizure this month. I am

> distressed

> that it happened again. I have learned from researching on the web, that one

> of the symptoms of Celiac can be seizures! Do any parents have advice to give

> me about whether

> he should be put on meds or can the SCD diet control it? Of course, we want

> to do what is

> best for him but most of these drugs have bad side effects, don't they? Also

> he is in his first year of high school and has subjects which require strict

> attention in class. He usually has

> a good deal of homework to do as well.

>

> I apologize for the lengthly e-mail but I really could use some advice.

>

TIA you must consult a physician about the seizures. Your son will need tests

done. I do

know that children with seizures are sometimes placed on ketogenic diets.

Carol F.

Toronto, Celiac, SCD 5 years

[Guest guest]

>

> Hello! I have been on the listserve for a while since I have Celiac Disease

> but I am writing

> about my 15 yr. old son. In August 2005 (right before school started), he

> had his first

> seizure. I believe it was the grand mal type from descriptions I've read

> about. This was

> the first time I had witnessed someone have a seizure. It was scary and

> heartbreaking.

> He was taken by ambulance to the hospital for evaluation and testing. He had

> many tests

> done including: urine sample, EKG, CAT scan, and EEG. He never had any

> seizures until

> this time so the doctors felt that perhaps it was an isolated event. My

> husband and I did

> not want to put him on meds either.

>

> As you might suspect, he has now suffered a second seizure this month. I am

> distressed

> that it happened again. I have learned from researching on the web, that one

> of the symptoms of Celiac can be seizures! Do any parents have advice to give

> me about whether

> he should be put on meds or can the SCD diet control it? Of course, we want

> to do what is

> best for him but most of these drugs have bad side effects, don't they? Also

> he is in his first year of high school and has subjects which require strict

> attention in class. He usually has

> a good deal of homework to do as well.

>

> I apologize for the lengthly e-mail but I really could use some advice.

>

TIA you must consult a physician about the seizures. Your son will need tests

done. I do

know that children with seizures are sometimes placed on ketogenic diets.

Carol F.

Toronto, Celiac, SCD 5 years

[Guest guest]

I looked on the discovery health website to see if it was airing

again soon and it is!!! Here is the Title and schedule.

network: Discovery Health

series: Mystery Diagnosis

episode: Like Mother, Like Son

... A child is discovered to have Celiac disease and with it, an

intolerance to gluten - a normal ingredient in most breads and whole

grains. ...

airing: — NOV 02 2005 @ 10:00 PM [ remind me ]

— NOV 03 2005 @ 01:00 AM [ remind me ]

— NOV 27 2005 @ 08:00 PM [ remind me ]

I would assume easten standard time but I don't know that. Hope it

helps!!!

andrea

>

> Oh my! Thank you so much, for your post. This is exactly

the type of

> evidence

> and/or experience I've been searching for. The episode you

described from

> the Discovery

> Health Channel sounds very similiar to what we've experienced.

However, our

> pediatrician

> is open and not closed-minded. Many people do not know about

Celiac Disease

> so this

> is unusual that it could actually be on TV. I will try to contact

them to

> see if I can purchase

> a copy of the episode that you described. I believe they sell

copies. It

> would be beneficial for my son to see what happens during a seizure

because it

> is scary. Also, it is important

> that they don't get hurt during a seizure.

>

> Yes, you're right about getting a Celiac panel done. That's our

next step.

> Then if the test

> comes back positive, it is going to be very difficult to keep him

on the

> diet. I'm open to

> suggestions anyone may have on this, especially in regards to

school and

> social situations.

>

> Thanks again for sharing that information with me. That

helps so much.

>

> Melodye

>

>

>

[Guest guest]

Yes, I saw that on their website. I plan to watch it. Thanks for telling me

about it!

Melodye

Celiac

[Guest guest]

Hi Melodye, my seven year old had his first generalised seizure when

he was 3.5yrs, another 9 months later, and other 6months after that.

He was prescribed tegretol but his seizures slowly became more

frequent until he was having them every 5-6 weeks and it was taking

more drugs to stop them. His neurologist wanted to try a different

med and I asked if we could wean the tegretol and wait a few weeks

whilst I tried a diet- the SCD and if the seizures continued we'd try

the epilim. He started the diet and two weeks later had another

seizure and none since. He was on the diet for about 6 months before

we had to stop because of his difficulty eating orally- he has

swallowing issues that are unrelated to the SCD. He was formula fed

and started having partials, myoclonics and absence seizures until I

figured out hoe to tube feed him the SCD, seizures resolved within a

couple of days and again, none since. He was on the diet for another

two months when his gastro-enterologist offered a biopsy to test for

celiac so he's now not on the diet, eating grains and though it

affects his behaviour and bowel movements he hasn't had a seizure. I

figure the diet has contributed alot of healing to his gut but as

time goes by the same damage is returning, as soon as the biopsy is

done we will return to SCD, in a flash! Before we started the diet he

was tested for celiac and tested negative, so don't let your son use

that as an excuse if he also tests negative, it's still worth doing

the diet, and the GF diet won't be anywhere near as effective.

I've learnt alot about celiac from this forum:

http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=-

1&f=141

that's where I first learnt of the SCD, several regulars there are on

or have been on the diet and are advocates. There are also many

people there who have had seizures related to celiac or gluten

sensitivity, but mostly people are just doing the GF diet, but there

are many who are a wealth of info and journal articles to help guide

your decisions and for you take to your sons doctors.

Given the choice your son will choose diet over meds, the side

effects are pretty difficult to live with at first, my son spent the

first few weeks on tegretol hardly functioning, it does get better,

but the diet has been the answer, it has no side effects, has no

potential to damage your liver or deplete your nutritional status

like anti-seizure meds do. The best side effect of the diet for my

side was his mental alertness, he was so sharp.

Why don't you sit down with his with a piece of paper and discuss the

pro's and cons of each choice, it'll soon become clear and once he's

been on the diet for a few weeks he'll be feeling so good he will

motivate himself- hopefully!

And a point for Carol, yes there is a possibility that a person can

try the ketogenic diet for seizure control, but it's only an option

after an exhaustive trial of medication because of the difficulties

in maintaining the ketogenic status, the long-term nutritional

effects and the risk of potentially fatal metabolic changes. There

have been two deaths of children on the ketogenic diet here in NZ and

the program is on hold. There's nothing the ketogenic diet can do

that the SCD doesn't, plus is healthy. I used to wish my son could

try it, now I'm so glad I never put him at risk.

Chris.

[Guest guest]

Yes, I saw that on their website. I'll be watching! Thanks!