can probiotics increase seizures??

[Guest guest]

Hi all,

well, I just wanted to update those of you who were so helpful with

s constipation issues and the leaky gut info. We started magnesium

3

weeks ago and it has helped but not controlled the problem yet. The first few

days we started it, he had a nice BM everyday and then we saw a decrease in

BMs. It could be that my husband brought home 40% cream from work and it has

constipated him more. He eats alot of cream which I have cut back on.

We added the pro biotics 2 weeks ago and about 2-3 days later, we saw a big

increase in seizures. He has had them daily in the am AND he has like little

white bumps on his stomach. The good thing is that he doesn' have that odor

anymore and I think we may have helped his Gut but seizures are here and he

is MOODY.

What to do?? I stopped giving him the probiotics a few days ago and he

seems a little better but not all the way. We see a nurse practitioner on 9/18

to test for allergies and lead, mercury etc. She is a DAN practitioner and a

GI on 10/18. Should I just hold out or keep on with the probiotics? Also, I

bought Wild Oats Brand Probiotics and I wonder maybe the additives are

upsetting him?

I have been reading a book called Unraveling the Mystery of Autism and it is

all about biomedical approach to treating the GI issues and I am just shocked

that is experiencing such similar things as the autistic kids.

He keeps developing new food allergies such as soy, peanuts etc. I am

wondering about the cream? He has alot of sensory issues.

Anyways, I would like to hear from those of you who are epxerienced with all

of this Gut stuff and what you think!!

Thanks so much

[Guest guest]

Two thoughts - with the probiotics, with some things you have to get

worse, to get better, part of the healing process. Wonder if thats what

started to happen with the probiotics. Geuss maybe the DAN practicioner

might be able to give you some input on that.

Gut issues, and develoing new allergies, you need to talk to Faye,

's mom, (think I got the names right), thats what kept happening

with him. Think she pretty well figured things out, although last I

remember her posting, they had upcoming appointmnets with some various,

unusual specialists. Don't know if Faye is still on the list, anyone

have her address, I remember it was something like rhtmce@??? maybe

nb.sympatico.ca

Am geussing there, but I do know they lived in New Brunswick

lloydandleslie@... wrote:

> Hi all,

>

> well, I just wanted to update those of you who were so helpful with

> s constipation issues and the leaky gut info. We started

> magnesium 3

> weeks ago and it has helped but not controlled the problem yet. The

> first few

> days we started it, he had a nice BM everyday and then we saw a

> decrease in

> BMs. It could be that my husband brought home 40% cream from work

> and it has

> constipated him more. He eats alot of cream which I have cut back

> on.

>

> We added the pro biotics 2 weeks ago and about 2-3 days later, we saw

> a big

> increase in seizures. He has had them daily in the am AND he has

> like little

> white bumps on his stomach. The good thing is that he doesn' have

> that odor

> anymore and I think we may have helped his Gut but seizures are here

> and he

> is MOODY.

>

> What to do?? I stopped giving him the probiotics a few days ago and

> he

> seems a little better but not all the way. We see a nurse

> practitioner on 9/18

> to test for allergies and lead, mercury etc. She is a DAN

> practitioner and a

> GI on 10/18. Should I just hold out or keep on with the probiotics?

> Also, I

> bought Wild Oats Brand Probiotics and I wonder maybe the additives

> are

> upsetting him?

>

> I have been reading a book called Unraveling the Mystery of Autism and

> it is

> all about biomedical approach to treating the GI issues and I am just

> shocked

> that is experiencing such similar things as the autistic

> kids.

> He keeps developing new food allergies such as soy, peanuts etc. I am

>

> wondering about the cream? He has alot of sensory issues.

>

> Anyways, I would like to hear from those of you who are epxerienced

> with all

> of this Gut stuff and what you think!!

>

> Thanks so much

>

>

>

>

[Guest guest]

,

Do you know if her son is still on the diet? I think I remember you taking

your daughter Jess off the diet. How is she doing with the meds and what

meds are you using? Did you stop because it stopped working or what if you

don't mind me asking?

Thanks

LEslie

[Guest guest]

,

Do you know if her son is still on the diet? I think I remember you taking

your daughter Jess off the diet. How is she doing with the meds and what

meds are you using? Did you stop because it stopped working or what if you

don't mind me asking?

Thanks

LEslie

[Guest guest]

,

Do you know if her son is still on the diet? I think I remember you taking

your daughter Jess off the diet. How is she doing with the meds and what

meds are you using? Did you stop because it stopped working or what if you

don't mind me asking?

Thanks

LEslie

[Guest guest]

I am glad that you are getting a break from the diet and it is keeping her

stable. Are you restricting anything at all or just giving her whatever she

wants? I am really gettign paranoid now wondering if the diet has stopped

working for although he still has a dramatic improvement from where

he was before the diet. I worry about his bones and also his growth and

kidneys, colon, liver etc. My brother in law was on the Atkins diet for about

4

years and he has had some problems with his colon and kindeys as a result of

it. Of course, he didn't realize that was the cause. THe doctor made him

come off immediately. My mom is constantly nagging me about the diet and his

health. I always remind her of where he came from and that this is it. This

is his only choice. When it has stopped working like it used to, I am getting

worried of what is next.

More than you asked for.

Thanks for your help and I'll keep my fingers crossed for Jess

[Guest guest]

I am glad that you are getting a break from the diet and it is keeping her

stable. Are you restricting anything at all or just giving her whatever she

wants? I am really gettign paranoid now wondering if the diet has stopped

working for although he still has a dramatic improvement from where

he was before the diet. I worry about his bones and also his growth and

kidneys, colon, liver etc. My brother in law was on the Atkins diet for about

4

years and he has had some problems with his colon and kindeys as a result of

it. Of course, he didn't realize that was the cause. THe doctor made him

come off immediately. My mom is constantly nagging me about the diet and his

health. I always remind her of where he came from and that this is it. This

is his only choice. When it has stopped working like it used to, I am getting

worried of what is next.

More than you asked for.

Thanks for your help and I'll keep my fingers crossed for Jess

[Guest guest]

I am glad that you are getting a break from the diet and it is keeping her

stable. Are you restricting anything at all or just giving her whatever she

wants? I am really gettign paranoid now wondering if the diet has stopped

working for although he still has a dramatic improvement from where

he was before the diet. I worry about his bones and also his growth and

kidneys, colon, liver etc. My brother in law was on the Atkins diet for about

4

years and he has had some problems with his colon and kindeys as a result of

it. Of course, he didn't realize that was the cause. THe doctor made him

come off immediately. My mom is constantly nagging me about the diet and his

health. I always remind her of where he came from and that this is it. This

is his only choice. When it has stopped working like it used to, I am getting

worried of what is next.

More than you asked for.

Thanks for your help and I'll keep my fingers crossed for Jess

[Guest guest]

lloydandleslie@... wrote:

> ,

> Do you know if her son is still on the diet?

I think not, think he developed food tolerances to most things he could

have on the diet, maybe he is some sort of modified version. Why don't

you try rhmtce@... and see if it works

> I think I remember you taking

> your daughter Jess off the diet. How is she doing with the meds and

> what

> meds are you using?

So far so good (although I thought they were about to return yesterday -

she fell asleep at the movie theatre which she has never done before and

was very jumpy, when we woke her up she acted kind of wierd for a while,

then seeme fine) but too soon to tell really - Jess goes months without

seizures and tends to have a definite pattern, her next " seizure month "

should be November, so I geuss them we will know. Meds - Keppra, 1000 mg

and carnsone 2500 mg, 125 mg of diamox (which had been added to diet to

make her more acidic, we will remove that if we get through Nov okay)

> Did you stop because it stopped working or what if you

> don't mind me asking?

It worked for almost 2 years, stopped. Added diamox, worked for a few

days short of 2 years, stopped. Had an absoloutely awful year, then none

since last Nov. But for the past year she has been screaming bloody

murder to come off, had been on 6.5 years and after the first year was

sooo good about it until the past year. Just seemed like the right thing

to do, she was sick of it, I was sick of it, didn't seem to be working,

really wanted her to grow, had issues with kidneys and bones (although

we were closely monitoring and she seemed to doing okay there).

Wouldn't say we would never go back, but not for a long time.......at

least thats the way I feel at the moment

I expect " them " to return, just a matter of when. Don't think we will

ever find anything that will give us more than a year or two control, so

when we lose it, we will just keep looking again. Plan is " when " they

return to add ospolot (like diamox but must stronger, because acidity is

the only thing ever shown to stop her seizures - until now. Which puts

us back with same calcium issues and maybe growth issues too......Don't

want to up keppra because I really don't like her behaviour on current

dose

Well.....geuss that was more than you aked for

>

>

> Thanks

> LEslie

>

>

>

[Guest guest]

lloydandleslie@... wrote:

> ,

> Do you know if her son is still on the diet?

I think not, think he developed food tolerances to most things he could

have on the diet, maybe he is some sort of modified version. Why don't

you try rhmtce@... and see if it works

> I think I remember you taking

> your daughter Jess off the diet. How is she doing with the meds and

> what

> meds are you using?

So far so good (although I thought they were about to return yesterday -

she fell asleep at the movie theatre which she has never done before and

was very jumpy, when we woke her up she acted kind of wierd for a while,

then seeme fine) but too soon to tell really - Jess goes months without

seizures and tends to have a definite pattern, her next " seizure month "

should be November, so I geuss them we will know. Meds - Keppra, 1000 mg

and carnsone 2500 mg, 125 mg of diamox (which had been added to diet to

make her more acidic, we will remove that if we get through Nov okay)

> Did you stop because it stopped working or what if you

> don't mind me asking?

It worked for almost 2 years, stopped. Added diamox, worked for a few

days short of 2 years, stopped. Had an absoloutely awful year, then none

since last Nov. But for the past year she has been screaming bloody

murder to come off, had been on 6.5 years and after the first year was

sooo good about it until the past year. Just seemed like the right thing

to do, she was sick of it, I was sick of it, didn't seem to be working,

really wanted her to grow, had issues with kidneys and bones (although

we were closely monitoring and she seemed to doing okay there).

Wouldn't say we would never go back, but not for a long time.......at

least thats the way I feel at the moment

I expect " them " to return, just a matter of when. Don't think we will

ever find anything that will give us more than a year or two control, so

when we lose it, we will just keep looking again. Plan is " when " they

return to add ospolot (like diamox but must stronger, because acidity is

the only thing ever shown to stop her seizures - until now. Which puts

us back with same calcium issues and maybe growth issues too......Don't

want to up keppra because I really don't like her behaviour on current

dose

Well.....geuss that was more than you aked for

>

>

> Thanks

> LEslie

>

>

>

[Guest guest]

lloydandleslie@... wrote:

> ,

> Do you know if her son is still on the diet?

I think not, think he developed food tolerances to most things he could

have on the diet, maybe he is some sort of modified version. Why don't

you try rhmtce@... and see if it works

> I think I remember you taking

> your daughter Jess off the diet. How is she doing with the meds and

> what

> meds are you using?

So far so good (although I thought they were about to return yesterday -

she fell asleep at the movie theatre which she has never done before and

was very jumpy, when we woke her up she acted kind of wierd for a while,

then seeme fine) but too soon to tell really - Jess goes months without

seizures and tends to have a definite pattern, her next " seizure month "

should be November, so I geuss them we will know. Meds - Keppra, 1000 mg

and carnsone 2500 mg, 125 mg of diamox (which had been added to diet to

make her more acidic, we will remove that if we get through Nov okay)

> Did you stop because it stopped working or what if you

> don't mind me asking?

It worked for almost 2 years, stopped. Added diamox, worked for a few

days short of 2 years, stopped. Had an absoloutely awful year, then none

since last Nov. But for the past year she has been screaming bloody

murder to come off, had been on 6.5 years and after the first year was

sooo good about it until the past year. Just seemed like the right thing

to do, she was sick of it, I was sick of it, didn't seem to be working,

really wanted her to grow, had issues with kidneys and bones (although

we were closely monitoring and she seemed to doing okay there).

Wouldn't say we would never go back, but not for a long time.......at

least thats the way I feel at the moment

I expect " them " to return, just a matter of when. Don't think we will

ever find anything that will give us more than a year or two control, so

when we lose it, we will just keep looking again. Plan is " when " they

return to add ospolot (like diamox but must stronger, because acidity is

the only thing ever shown to stop her seizures - until now. Which puts

us back with same calcium issues and maybe growth issues too......Don't

want to up keppra because I really don't like her behaviour on current

dose

Well.....geuss that was more than you aked for

>

>

> Thanks

> LEslie

>

>

>

[Guest guest]

>> >Hello Everyone

I thought i would check into this site today- I am still a member but

just scan it every now and again. How odd that I check it and see my

name. LESLIE- do you have questions?

Mike is not on the Keto diet now but on a very special diet. During

Keto he developed many allergies to just about every thing he ate- so

now we strictly avoid alot of things- makes meal time very

interesting.

Like Chris- Mike could never tolerate probiotics and yes they did

make his seizures much worse.

Mike originally had a dx of LGS but that does not seem to fit

anymore- actual dx- well we just say severe epilepsy as he doesn't

fit anywhere. Treatment for Mike now is monthly IVIG, verrry small

dose of Lamictal and diet control. He is doing great but have had

alot of bumps in the road. Gut issues- wow can I talk about these but

Mike seems to have the opposite problem to Chris- chronic diarrhea-

lots of growth issues, vommitting, malabsorption, leaky gut etc/etc.

Mike is dx with an immune disorder which seems to be the underlying

culprit to all his problems. Unfortunately this was not discovered

until he had been seizuring non stop for about 4 years. That took its

toll and we still have lots of issues but we feel we are finally on

the right track.

I'm here if you have questions?

Unfortunately my e-mail is not working just now so do not post

privately- you must post to the group.

Faye

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-

unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

>> >Hello Everyone

I thought i would check into this site today- I am still a member but

just scan it every now and again. How odd that I check it and see my

name. LESLIE- do you have questions?

Mike is not on the Keto diet now but on a very special diet. During

Keto he developed many allergies to just about every thing he ate- so

now we strictly avoid alot of things- makes meal time very

interesting.

Like Chris- Mike could never tolerate probiotics and yes they did

make his seizures much worse.

Mike originally had a dx of LGS but that does not seem to fit

anymore- actual dx- well we just say severe epilepsy as he doesn't

fit anywhere. Treatment for Mike now is monthly IVIG, verrry small

dose of Lamictal and diet control. He is doing great but have had

alot of bumps in the road. Gut issues- wow can I talk about these but

Mike seems to have the opposite problem to Chris- chronic diarrhea-

lots of growth issues, vommitting, malabsorption, leaky gut etc/etc.

Mike is dx with an immune disorder which seems to be the underlying

culprit to all his problems. Unfortunately this was not discovered

until he had been seizuring non stop for about 4 years. That took its

toll and we still have lots of issues but we feel we are finally on

the right track.

I'm here if you have questions?

Unfortunately my e-mail is not working just now so do not post

privately- you must post to the group.

Faye

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-

unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Who said God doesn't work in mysterious ways?? And I even remembered her

email correctly

Welcome back Faye, sure will be glad to chat with you

rhmtce wrote:

> >> >Hello Everyone

> I thought i would check into this site today- I am still a member but

> just scan it every now and again. How odd that I check it and see my

> name. LESLIE- do you have questions?

> Mike is not on the Keto diet now but on a very special diet. During

> Keto he developed many allergies to just about every thing he ate- so

> now we strictly avoid alot of things- makes meal time very

> interesting.

> Like Chris- Mike could never tolerate probiotics and yes they did

> make his seizures much worse.

> Mike originally had a dx of LGS but that does not seem to fit

> anymore- actual dx- well we just say severe epilepsy as he doesn't

> fit anywhere. Treatment for Mike now is monthly IVIG, verrry small

> dose of Lamictal and diet control. He is doing great but have had

> alot of bumps in the road. Gut issues- wow can I talk about these but

> Mike seems to have the opposite problem to Chris- chronic diarrhea-

> lots of growth issues, vommitting, malabsorption, leaky gut etc/etc.

> Mike is dx with an immune disorder which seems to be the underlying

> culprit to all his problems. Unfortunately this was not discovered

> until he had been seizuring non stop for about 4 years. That took its

> toll and we still have lots of issues but we feel we are finally on

> the right track.

> I'm here if you have questions?

> Unfortunately my e-mail is not working just now so do not post

> privately- you must post to the group.

> Faye

> > > " The Ketogenic Diet....a realistic treatment option, NOT just a

> last

> > > resort! "

> > >

> > > List is for parent to parent support only.

> > > It is important to get medical advice from a

> > > professional keto team!

> > > Subscribe: ketogenic-subscribe

> > > Unsubscribe: ketogenic-

> unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

Our next option was brain surgery for Tanner. He is doing so well. I prefer

the diet. Maybe your mom should see the movie, " First do no Harm " with Meryl

Streep. It sure reminds you of how it was at first.

Hallie

Re: can probiotics increase seizures??

I am glad that you are getting a break from the diet and it is keeping her

stable. Are you restricting anything at all or just giving her whatever she

wants? I am really gettign paranoid now wondering if the diet has stopped

working for although he still has a dramatic improvement from

where

he was before the diet. I worry about his bones and also his growth and

kidneys, colon, liver etc. My brother in law was on the Atkins diet for

about 4

years and he has had some problems with his colon and kindeys as a result of

it. Of course, he didn't realize that was the cause. THe doctor made him

come off immediately. My mom is constantly nagging me about the diet and his

health. I always remind her of where he came from and that this is it. This

is his only choice. When it has stopped working like it used to, I am

getting

worried of what is next.

More than you asked for.

Thanks for your help and I'll keep my fingers crossed for Jess

[Guest guest]

,

Our next option was brain surgery for Tanner. He is doing so well. I prefer

the diet. Maybe your mom should see the movie, " First do no Harm " with Meryl

Streep. It sure reminds you of how it was at first.

Hallie

Re: can probiotics increase seizures??

I am glad that you are getting a break from the diet and it is keeping her

stable. Are you restricting anything at all or just giving her whatever she

wants? I am really gettign paranoid now wondering if the diet has stopped

working for although he still has a dramatic improvement from

where

he was before the diet. I worry about his bones and also his growth and

kidneys, colon, liver etc. My brother in law was on the Atkins diet for

about 4

years and he has had some problems with his colon and kindeys as a result of

it. Of course, he didn't realize that was the cause. THe doctor made him

come off immediately. My mom is constantly nagging me about the diet and his

health. I always remind her of where he came from and that this is it. This

is his only choice. When it has stopped working like it used to, I am

getting

worried of what is next.

More than you asked for.

Thanks for your help and I'll keep my fingers crossed for Jess

[Guest guest]

Hi - you probably already know this, but thought I'd mention it anyway

- as far as I understand it, allergy testing through blood tests (if these are

gonna be included in the testing) will usually only come back as positive if he

has actually recently been consuming enough of the foods that he may be allergic

to, like enough to have already provoked an antibody response that will show in

the blood results.

Gluten testing for example over here for was inconclusive as he hadn't

been eating 'normal' gluten amounts for 4-6 weeks prior to the testing.

Good luck - I so hope you find your answers. Sounds complicated and verrrry

frustrating....

----- Original Message -----

From: lloydandleslie@...

We are going to have him tested for a battery of allergies etc in a couple

weeks.

[Guest guest]

I had heard something like that. I really don't know what they are going to

do yet as it is our first appt but I know they are going to test for lead

and mercury in the blood as well. I'm really curious to see those results.

THanks

[Guest guest]

lloydandleslie@... wrote:

>

> I am glad that you are getting a break from the diet and it is keeping

> her

> stable. Are you restricting anything at all or just giving her

> whatever she

> wants?

I did restrict, trying to keep it low carb for the first six weeks after

we stopped weighing, just gradually loosening up a litle every week. Now

she eats pretty much what she wants (except I have to limit quantity,

she now wants to eat the entire world it seems!) although I am trying my

best to avoid the real sugar stuff

Hope you got some help from Faye, been reading my mail haphazardly

lately

> I am really gettign paranoid now wondering if the diet has stopped

> working for although he still has a dramatic improvement

> from where

> he was before the diet. I worry about his bones and also his growth

> and

> kidneys, colon, liver etc. My brother in law was on the Atkins diet

> for about 4

> years and he has had some problems with his colon and kindeys as a

> result of

> it. Of course, he didn't realize that was the cause. THe doctor

> made him

> come off immediately. My mom is constantly nagging me about the diet

> and his

> health. I always remind her of where he came from and that this is

> it. This

> is his only choice. When it has stopped working like it used to, I

> am getting

> worried of what is next.

>

> More than you asked for.

>

> Thanks for your help and I'll keep my fingers crossed for Jess

>

>

>

>