Re: Lost and disorientated! Stumbling starter needs advice!

[Guest guest]

Anita,

I am doing SCD with my daughter (age 10) for seizure control also. We originally

started SCD three years ago, after a little over two YEARS on the Ketogenic

diet... during which she had good control at first, but kept going overly

ketotic after the first year and we had to increase carbs to keep her from

getting sick, but then lost seizure control.

We went right to SCD after Keto... and what a RELIEF, as I'm sure you know

exactly what I mean. No more weighing food! No more planning meals on computer

programs! Katera responded well at first to SCD... going about five months

seizure free before seizures returned with a vengeance and we had to start

exploring other avenues... more drug trials, and finally, placement of a Vagus

Nerve Stimulator. That... plus medication (Keppra) has still not eliminated

seizures, but was *helping* to make them less severe. So, I decided to go back

to SCD (May 27th, 06) and see if the combination would help. So far, it has

not... but too soon to judge, I think.

The first thing I see in what you wrote today is that, in my opinion, Jack DID

have some gut issues... if you were seeing mushy poops, with undigested bits,

and sometimes mucousy. So, " no real sign of gut issues " , I think is not really

true. His gut issues may not have been as clear... or severe... but they were

there.

Secondly, I think you really should NOT push on too quickly with adding new

foods... although I'm glad you went back and re-started, and are now using no

raw foods. I urge you strongly just to acknowledge that true gut healing takes

time... and that if you push too much, you will possibly trip yourself up again.

You said:

<<I want to cut meat out of Jack's diet because of the possiblity glutamate

might be causing/contributing to his siezures, but I recognise the fact he has a

large appetite!. >>

I think that eliminating meat for glutamate reasons might be something you would

want to explore at some point... but I wouldn't do it just now. You're juggling

too many things at once, and you won't know which is doing what. I have some

messages saved regarding glutamates and seizures that I can send to you

privately if you want.... and also about magnesium supplementation and some

other things for seizure kids. Let me know if you're interested.

Like you said, you want to give SCD " a fair go " .... and I think you need longer

than ten days after starting fresh before you could say you've done that. Save

thinking about pulling meat out of his diet for a bit down the road. There are

glutamates in MANY foods... and it would be really, REALLY hard to eliminate

them on SCD. Anyway, that's just what I think.

I honestly think starting SCD yogurt would be a brilliant move. I would

certainly do that before beginning to add any raw foods again. Wait a bit longer

on introducing foods in the cabbage family, too.... cabbage, broccoli,

cauliflower.... maybe a couple of weeks.

I know how you feel about being " in denial " about your son's condition... my

daughter is really extremely delayed in every way and I've had many emotional

ups and downs over it all... wondering what I could have done differently...

wondering if I'm doing enough. At least I can tell you I understand. Hang in

there, Anita... don't despair.

Patti

Lost and disorientated! Stumbling starter needs advice!

Hi everyone

Firstly, thanks to those who answered my yoghurt question. I will try it, as

Jack is mainly epileptic, and the autism is a result of the development delay

from his uncontrolled siezures.

Can I bumble on abit about how we're going and if anyone has any pearls of

wisdom I'd really love to hear them. I'm in the UK and no-one I've come into

contact with has ever heard of this diet and I'm probably slightly mad for even

trying it because I have to be the first to admit that Jack shows no real sign

of gut issues, but I'm desperate and...well, I'm sure you guys know how that

feels!

We started the SCD originally on 27th July after a failed stint on the

ketogenic diet. Jack can't use a spoon, so I couldn't give him the intro broth

etc, so I just fed him boiled chicken and well cooked veggies. I have to confess

I cheated because Jack loves his food and I didn't think he would eat the really

basic stuff, so I guess we really started off on an exclusion version of the

diet, in that I cut out dairy and all the illegal foods, but otherwise he ate

'normally': all legal foods, raw or cooked, and straight into the nut flour

recipes. The first week he did seem chirpier than usual (this could have been

his relief at coming off the keto diet though!), but there was no effect on his

siezures or his bms (can we talk poo for a moment? Jack goes every other day,

usually. He's still in nappies, but to me his bms are mushy, and before we

started this, they would always have large bits of food in them. Sometimes they

could be really mucusy, which is what got me to

thinking there might be a problem, but they're a good colour. I've raised the

gluten allergy question with all our docs, and they all say that Jack is too

healthy looking -he's a big chunky boy- for this to be an issue).

Anyway, week three Jack's siezures got really bad and lots of them, we were on

holiday at the time, and maybe this contributed to it. When we got back I read a

post from someone who had basically run the scd the same way I had and they were

advised to start again and cook everything - do it properly basically - so I

figured to give the diet a fair go I ought to do the same.

So, I started a fresh ten days ago and did the intro diet properly (amazingly

Jack suffered it very well!) for two days, then I started adding things

gradually. We are now on meat, fish, eggs, squash, courgette, green beans and

carrots, with cooked pear and apple and I had given him some raw banana but I'm

not sure if this didn't disagree with him or whether he was just having a bad

siezure day.

The thing is, I want to cut meat out of Jack's diet because of the possiblity

glutamate might be causing/contributing to his siezures, but I recognise the

fact he has a large appetite!. Can I add cooked veggies and fruit every day?

Like one a day now, or is that going to be too rapid? I have yet to see any

change in Jack's condition. Maybe this diet wont work for us, I don't know, but

I do want to give it the best chance, and I realise that it might take months to

have effect. How slow do I really need to go with Jack, given that diarrhea

isn't a problem for us? If I make sure I cook everything, will I be giving his

gut the chance it needs to heal if I press forward a bit more rapidly on

introducing foods? And can I give the yoghurt a go now, or should I wait a bit

longer given the fact I've only just started doing it properly, so to speak?

Does all that make sense? Sorry, I know it's a bit of a ramble, but I'm

feeling a bit lost and disorientated and I don't know if I'm just losing myself

in a little too much hope with this whole diet thing. Sometimes I'm completely

convinced that it all makes sense and that it could really make a difference,

other times I'm wondering whether I'm just in denial over the futility of my

son's condition (I guess this is the line the medics keep giving us anyway).

Any thoughts/opinions would be very gratefully received.

Take care everyone!

Anita, UK

Mother to Jack, 2.2 yrs, epileptic since 12months, autism diagnosis three

months ago.

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

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Hi Patti

Thank you for taking the time to resond to my email.

I would really appreciate anything you may have re: glutamate/siezures that

you feel might be relevant to Jack's case, and you mentioned the supplements

too. He's had a really bad three days, in excess of seventy siezures a day,

although he has seemed perkier despite the high number. It's just really hard to

tell if he's having a bad day or whether he's having a reaction to something

he's eaten, but the food is still the cooked veggies and fruit I mentioned in my

email, so I really struggle to see how it might have triggered extra siezures

unless it's the reaction to some kind of die-off, though he should be through

the dairy and gluten die off stage by now, as he hasn't been on an scd illegal

since July27th (albeit they weren't cooked etc then).

I am going to take it slowly. I guess I can't take into account the time that

he was merely on the elimination diet, so I will take this second go as the

beginning of the whole process and see where we go from there, but I do realise

this is a long-haul project!

Many thanks again, I hope you're doing well at your end.

Take care

Anita

Patti wrote:

Anita,

I am doing SCD with my daughter (age 10) for seizure control also. We originally

started SCD three years ago, after a little over two YEARS on the Ketogenic

diet... during which she had good control at first, but kept going overly

ketotic after the first year and we had to increase carbs to keep her from

getting sick, but then lost seizure control.

We went right to SCD after Keto... and what a RELIEF, as I'm sure you know

exactly what I mean. No more weighing food! No more planning meals on computer

programs! Katera responded well at first to SCD... going about five months

seizure free before seizures returned with a vengeance and we had to start

exploring other avenues... more drug trials, and finally, placement of a Vagus

Nerve Stimulator. That... plus medication (Keppra) has still not eliminated

seizures, but was *helping* to make them less severe. So, I decided to go back

to SCD (May 27th, 06) and see if the combination would help. So far, it has

not... but too soon to judge, I think.

The first thing I see in what you wrote today is that, in my opinion, Jack DID

have some gut issues... if you were seeing mushy poops, with undigested bits,

and sometimes mucousy. So, " no real sign of gut issues " , I think is not really

true. His gut issues may not have been as clear... or severe... but they were

there.

Secondly, I think you really should NOT push on too quickly with adding new

foods... although I'm glad you went back and re-started, and are now using no

raw foods. I urge you strongly just to acknowledge that true gut healing takes

time... and that if you push too much, you will possibly trip yourself up again.

You said:

<<I want to cut meat out of Jack's diet because of the possiblity glutamate

might be causing/contributing to his siezures, but I recognise the fact he has a

large appetite!. >>

I think that eliminating meat for glutamate reasons might be something you would

want to explore at some point... but I wouldn't do it just now. You're juggling

too many things at once, and you won't know which is doing what. I have some

messages saved regarding glutamates and seizures that I can send to you

privately if you want.... and also about magnesium supplementation and some

other things for seizure kids. Let me know if you're interested.

Like you said, you want to give SCD " a fair go " .... and I think you need longer

than ten days after starting fresh before you could say you've done that. Save

thinking about pulling meat out of his diet for a bit down the road. There are

glutamates in MANY foods... and it would be really, REALLY hard to eliminate

them on SCD. Anyway, that's just what I think.

I honestly think starting SCD yogurt would be a brilliant move. I would

certainly do that before beginning to add any raw foods again. Wait a bit longer

on introducing foods in the cabbage family, too.... cabbage, broccoli,

cauliflower.... maybe a couple of weeks.

I know how you feel about being " in denial " about your son's condition... my

daughter is really extremely delayed in every way and I've had many emotional

ups and downs over it all... wondering what I could have done differently...

wondering if I'm doing enough. At least I can tell you I understand. Hang in

there, Anita... don't despair.

Patti

Lost and disorientated! Stumbling starter needs advice!

Hi everyone

Firstly, thanks to those who answered my yoghurt question. I will try it, as

Jack is mainly epileptic, and the autism is a result of the development delay

from his uncontrolled siezures.

Can I bumble on abit about how we're going and if anyone has any pearls of

wisdom I'd really love to hear them. I'm in the UK and no-one I've come into

contact with has ever heard of this diet and I'm probably slightly mad for even

trying it because I have to be the first to admit that Jack shows no real sign

of gut issues, but I'm desperate and...well, I'm sure you guys know how that

feels!

We started the SCD originally on 27th July after a failed stint on the ketogenic

diet. Jack can't use a spoon, so I couldn't give him the intro broth etc, so I

just fed him boiled chicken and well cooked veggies. I have to confess I cheated

because Jack loves his food and I didn't think he would eat the really basic

stuff, so I guess we really started off on an exclusion version of the diet, in

that I cut out dairy and all the illegal foods, but otherwise he ate 'normally':

all legal foods, raw or cooked, and straight into the nut flour recipes. The

first week he did seem chirpier than usual (this could have been his relief at

coming off the keto diet though!), but there was no effect on his siezures or

his bms (can we talk poo for a moment? Jack goes every other day, usually. He's

still in nappies, but to me his bms are mushy, and before we started this, they

would always have large bits of food in them. Sometimes they could be really

mucusy, which is what got me to

thinking there might be a problem, but they're a good colour. I've raised the

gluten allergy question with all our docs, and they all say that Jack is too

healthy looking -he's a big chunky boy- for this to be an issue).

Anyway, week three Jack's siezures got really bad and lots of them, we were on

holiday at the time, and maybe this contributed to it. When we got back I read a

post from someone who had basically run the scd the same way I had and they were

advised to start again and cook everything - do it properly basically - so I

figured to give the diet a fair go I ought to do the same.

So, I started a fresh ten days ago and did the intro diet properly (amazingly

Jack suffered it very well!) for two days, then I started adding things

gradually. We are now on meat, fish, eggs, squash, courgette, green beans and

carrots, with cooked pear and apple and I had given him some raw banana but I'm

not sure if this didn't disagree with him or whether he was just having a bad

siezure day.

The thing is, I want to cut meat out of Jack's diet because of the possiblity

glutamate might be causing/contributing to his siezures, but I recognise the

fact he has a large appetite!. Can I add cooked veggies and fruit every day?

Like one a day now, or is that going to be too rapid? I have yet to see any

change in Jack's condition. Maybe this diet wont work for us, I don't know, but

I do want to give it the best chance, and I realise that it might take months to

have effect. How slow do I really need to go with Jack, given that diarrhea

isn't a problem for us? If I make sure I cook everything, will I be giving his

gut the chance it needs to heal if I press forward a bit more rapidly on

introducing foods? And can I give the yoghurt a go now, or should I wait a bit

longer given the fact I've only just started doing it properly, so to speak?

Does all that make sense? Sorry, I know it's a bit of a ramble, but I'm feeling

a bit lost and disorientated and I don't know if I'm just losing myself in a

little too much hope with this whole diet thing. Sometimes I'm completely

convinced that it all makes sense and that it could really make a difference,

other times I'm wondering whether I'm just in denial over the futility of my

son's condition (I guess this is the line the medics keep giving us anyway).

Any thoughts/opinions would be very gratefully received.

Take care everyone!

Anita, UK

Mother to Jack, 2.2 yrs, epileptic since 12months, autism diagnosis three months

ago.

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

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Anita, I will get back to this message later this evening or tomorrow. I have

Katera's birthday party today and am NOT READY.... cleaning, wrapping, blowing

up balloons!!!

Patti

Re: Lost and disorientated! Stumbling starter needs

advice!

Hi Patti

Thank you for taking the time to resond to my email.

I would really appreciate anything you may have re: glutamate/siezures that

you feel might be relevant to Jack's case, and you mentioned the supplements

too. He's had a really bad three days, in excess of seventy siezures a day,

although he has seemed perkier despite the high number. It's just really hard to

tell if he's having a bad day or whether he's having a reaction to something

he's eaten, but the food is still the cooked veggies and fruit I mentioned in my

email, so I really struggle to see how it might have triggered extra siezures

unless it's the reaction to some kind of die-off, though he should be through

the dairy and gluten die off stage by now, as he hasn't been on an scd illegal

since July27th (albeit they weren't cooked etc then).

I am going to take it slowly. I guess I can't take into account the time that

he was merely on the elimination diet, so I will take this second go as the

beginning of the whole process and see where we go from there, but I do realise

this is a long-haul project!

Many thanks again, I hope you're doing well at your end.

Take care

Anita

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[Guest guest]

Anita,

I'm sending some info to you privately on glutamates and seizures..... and will

follow with some other things that might be of interest.

I'm sorry to hear that he's had some bad seizure days... but the fact that you

say he seems " perkier " says to me that this really may be die-off.... in other

words, toxins being excreted by the bad gut bacteria as they die off and pass on

out of his body. It's the same toxins that they excrete all the time, if there

are colonies of bad guys out of control down there.... but as they die, they

give off LOTS more of those toxins, all at once. HOPEFULLY, as a few more days

go by, and you stick 100% to SCD, this will begin to improve. Anyway, whenever

we hear about a kid showing BAD symptoms... along with GOOD.... it's just a

hallmark of bacterial die-off.

This is different from the effects of gluten and casein and how they can

influence a kid's brain.... this is a very, very different thing. It may take a

little while... die-off is different for everyone, depending on exactly the

unique state of their gut is. In the meantime, epsom salts baths!!! Twice a

day.... at least that's what I'd do.

It's also CRITICAL right that you get a legal acidophilus supplement to begin

repopulating his gut with the good flora. I can't stress that enough. You want

those to replace the space that was taken up by colonies of unfriendly

bacteria.... so that yeast does not take over.

More e-mails to come....to your private address.

Patti

Re: Lost and disorientated! Stumbling starter needs

advice!

Hi Patti

Thank you for taking the time to resond to my email.

I would really appreciate anything you may have re: glutamate/siezures that

you feel might be relevant to Jack's case, and you mentioned the supplements

too. He's had a really bad three days, in excess of seventy siezures a day,

although he has seemed perkier despite the high number. It's just really hard to

tell if he's having a bad day or whether he's having a reaction to something

he's eaten, but the food is still the cooked veggies and fruit I mentioned in my

email, so I really struggle to see how it might have triggered extra siezures

unless it's the reaction to some kind of die-off, though he should be through

the dairy and gluten die off stage by now, as he hasn't been on an scd illegal

since July27th (albeit they weren't cooked etc then).

I am going to take it slowly. I guess I can't take into account the time that

he was merely on the elimination diet, so I will take this second go as the

beginning of the whole process and see where we go from there, but I do realise

this is a long-haul project!

Many thanks again, I hope you're doing well at your end.

Take care

Anita

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[Guest guest]

Hi Patti

Thank you so much for all the information you have sent me - I'm on to the

research right now! And I'll definitely follow your advice re; supplement. Thank

you!

I hope you survived the party and tha Katera had a great time! Our parties

only ever get a token balloon - just not enough hours in the day eh?!

Best wishes

Anita

Patti wrote:

Anita, I will get back to this message later this evening or tomorrow.

I have Katera's birthday party today and am NOT READY.... cleaning, wrapping,

blowing up balloons!!!

Patti

Re: Lost and disorientated! Stumbling starter needs

advice!

Hi Patti

Thank you for taking the time to resond to my email.

I would really appreciate anything you may have re: glutamate/siezures that you

feel might be relevant to Jack's case, and you mentioned the supplements too.

He's had a really bad three days, in excess of seventy siezures a day, although

he has seemed perkier despite the high number. It's just really hard to tell if

he's having a bad day or whether he's having a reaction to something he's eaten,

but the food is still the cooked veggies and fruit I mentioned in my email, so I

really struggle to see how it might have triggered extra siezures unless it's

the reaction to some kind of die-off, though he should be through the dairy and

gluten die off stage by now, as he hasn't been on an scd illegal since July27th

(albeit they weren't cooked etc then).

I am going to take it slowly. I guess I can't take into account the time that he

was merely on the elimination diet, so I will take this second go as the

beginning of the whole process and see where we go from there, but I do realise

this is a long-haul project!

Many thanks again, I hope you're doing well at your end.

Take care

Anita

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