Re: Four weeks in - advice please!

[Guest guest]

Anita,

Jack's bowels are a bit in a state of shock as you begin to change the bacterial

balance in there. It stands to reason that he will, in the beginning, have

fluctuating bowel movements, symptoms you may not have seen before (die-off)

etc. His bowel is going from rumin digestion (what cow do) to small intestine

digestion. I am pretty excited for you that you are seeing changes. It will

take time to see a regular bowel function so 4 weeks is a little early to be

telling you whether his bms should look like this or like that.

HTH, Charlene

Hi everyone

I just wanted to share where we are at the moment and see if anyone could

offer any pearls of wisdom as to whether Jack's bms are normalising.

We restarted the diet with the intro diet four weeks ago now, and he is still

on cooked fruit and veg only, eggs and fish (no dairy), and a little bit of nut

butter. His diet (fruit and veg wise) is still limited as we have taken it

slowly this time (apple, pear, peach, squash, spinach, courgette, peppers,

beans, eggplant).

My concern is that whilst his bms are smoother with significantly less

bits/chunks of food than before, they are still very mushy texture, and are

frequently even worse than ever. Is this normal? Should they be 'firming up' by

now?

Any insights into this delightful topic gratefully received! There has been as

yet no effect on Jack's siezures which are through the roof (60+ daily), but I'm

still hoping!

Also! While I'm here, do you think it would be ok to add nut flour in now or

is it still too early?

Many thanks

Anita

Jack 2.2, ASD & infantile spasms

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

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[Guest guest]

Anita,

Are you giving him an SCD-legal supplement of acidophilus, since you're not

giving him any dairy? This is essential, as the bad gut pathogens die-off, you

need to repopulate the gut with good flora and keep up a steady supply.

I personally would not give peppers this early on... are you peeling them? Are

you de-seeding the eggplant? Peeling and seeding the courgette (zucchini)?

He is not eating any meat or poultry? Only fish and eggs for protein? Just

curious.

Is he taking any other supplements? Seizure meds?

I would definitely not start nut flour if you are still having very loose/mushy

stools.... the nut flour would tend to increase that.

Is he able to have ripe bananas? Those (and cooked apple) tend to be more

" binding " .... helping firm things up.

Patti

Four weeks in - advice please!

Hi everyone

I just wanted to share where we are at the moment and see if anyone could

offer any pearls of wisdom as to whether Jack's bms are normalising.

We restarted the diet with the intro diet four weeks ago now, and he is still

on cooked fruit and veg only, eggs and fish (no dairy), and a little bit of nut

butter. His diet (fruit and veg wise) is still limited as we have taken it

slowly this time (apple, pear, peach, squash, spinach, courgette, peppers,

beans, eggplant).

My concern is that whilst his bms are smoother with significantly less

bits/chunks of food than before, they are still very mushy texture, and are

frequently even worse than ever. Is this normal? Should they be 'firming up' by

now?

Any insights into this delightful topic gratefully received! There has been as

yet no effect on Jack's siezures which are through the roof (60+ daily), but I'm

still hoping!

Also! While I'm here, do you think it would be ok to add nut flour in now or

is it still too early?

Many thanks

Anita

Jack 2.2, ASD & infantile spasms

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

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Thanks for your reply Charlene. Something seems to be happening down there, so

we'll persevere!

Anita

& Charlene Flikkema wrote:

Anita,

Jack's bowels are a bit in a state of shock as you begin to change the bacterial

balance in there. It stands to reason that he will, in the beginning, have

fluctuating bowel movements, symptoms you may not have seen before (die-off)

etc. His bowel is going from rumin digestion (what cow do) to small intestine

digestion. I am pretty excited for you that you are seeing changes. It will take

time to see a regular bowel function so 4 weeks is a little early to be telling

you whether his bms should look like this or like that.

HTH, Charlene

Hi everyone

I just wanted to share where we are at the moment and see if anyone could offer

any pearls of wisdom as to whether Jack's bms are normalising.

We restarted the diet with the intro diet four weeks ago now, and he is still on

cooked fruit and veg only, eggs and fish (no dairy), and a little bit of nut

butter. His diet (fruit and veg wise) is still limited as we have taken it

slowly this time (apple, pear, peach, squash, spinach, courgette, peppers,

beans, eggplant).

My concern is that whilst his bms are smoother with significantly less

bits/chunks of food than before, they are still very mushy texture, and are

frequently even worse than ever. Is this normal? Should they be 'firming up' by

now?

Any insights into this delightful topic gratefully received! There has been as

yet no effect on Jack's siezures which are through the roof (60+ daily), but I'm

still hoping!

Also! While I'm here, do you think it would be ok to add nut flour in now or is

it still too early?

Many thanks

Anita

Jack 2.2, ASD & infantile spasms

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

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Anita,

For now, until you can find a totally legal acidophilus, I would not give this

current one to him.... unless you can VERIFY that the " potato starch " is ONLY in

the capsule, that you are throwing away.

I understand the dilemma with seizure meds. Katera takes Keppra (levitracetam),

and I grind up the tablets to mix in applesauce, but there is *some* starch that

we can't avoid. Since the Rx costs well over $350 a month as it is, we could

never afford to have it compounded.

We have to do what we have to do.... and just know that Elaine understood this.

When a child must take a certain medication, you just have to do the best you

can.

In Jack's case, I'm just wondering.... do you think the sodium valproate is

really helping? I know I have been round and round and round with meds that

don't work... or have actually made Katera's seizures WORSE, so I just wonder if

he's having so many, is this med helping... or ??

I know that sometimes kids will have an increase in seizures when weaning a

med.... which would tend to make you think they " need " that medication, when

it's possibly somewhat of a withdrawal effect, that will go away. Not fun,

though.

It looks like you are doing everything right with the food. I would not worry

about the seeds in the courgettes, as long as you're using small, young one. You

are peeling them? I would for now.

Why so much fish? What kind of fish?

Why no other type of meat or poultry?

Two eggs a day sounds just fine.

It may be that he just needs a bit more time.

Just wondering.... sorry to sound abrupt.... I have to type and run today....

Patti

Re: Four weeks in - advice please!

Hi Patti

He is on acidophilus, and he's on sodium valproate for his siezures.

Unfortunately both of these contain illegals. The only acidophilus we could find

here (UK) (at the moment anyway) contains some potato starch. The ingredients

label is a bit vague and the starch could actually be contained in the shell,

which we're not giving him, just the powder inside it, so that might actually be

ok, but the s.v. definitely contains maize starch and there isn't an alternative

option on this for us, but he is on a very low dose, so hopefully it's not being

too harmful.

The peppers are all peeled and deseeded. The eggplants I'm using are small

ones which don't seem to have any seeds. The courgettes do have soft seeds, but

if I removed the seed centres there wouldn't be any of it left to feed him? He

doesn't have courgettes everyday. Everything is peeled. He does eat very ripe

bananas, usually two a day (one raw, one pancakes) and baked apple every day

too. He does eat a lot of fruit in a day, which presumably will effect the

consistency of his bms, but it's his snack food - so I guess in total (eg incl

meals) he's probably having four fruits a day.

He is only eating eggs and fish for protein. Fish three times a day, and two

eggs a day.

He's still in nappies, so whether things are getting mushed up that way, I

don't know, but the consistency of his bms haven't really changed since we

started, just the lack of food bits. We have had a few occasions where there

have been solid lumps within the mush, but not on a daily basis.

So am I on the right track do you think and it's just a case of time, or is

there something wrong?

Thoughts as ever very gratefully received!

Thanks Patti

Anita

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[Guest guest]

---

I know evry child is different but my son who has Celiac took

along time to get his BMs normal we lived with Food chunks and

Diahrea for about 1 1/2 years. It took us over a month to get

normal poop from him. Some times it was like slime.( sorry so

graphic) It was very scary at times. I hope things come around on

that end for you guys.

Jess

In pecanbread , Anita Sloan wrote:

>

> Hi everyone

>

> I just wanted to share where we are at the moment and see if

anyone could offer any pearls of wisdom as to whether Jack's bms are

normalising.

>

> We restarted the diet with the intro diet four weeks ago now, and

he is still on cooked fruit and veg only, eggs and fish (no dairy),

and a little bit of nut butter. His diet (fruit and veg wise) is

still limited as we have taken it slowly this time (apple, pear,

peach, squash, spinach, courgette, peppers, beans, eggplant).

>

> My concern is that whilst his bms are smoother with significantly

less bits/chunks of food than before, they are still very mushy

texture, and are frequently even worse than ever. Is this normal?

Should they be 'firming up' by now?

>

> Any insights into this delightful topic gratefully received!

There has been as yet no effect on Jack's siezures which are through

the roof (60+ daily), but I'm still hoping!

>

> Also! While I'm here, do you think it would be ok to add nut

flour in now or is it still too early?

>

> Many thanks

> Anita

>

> Jack 2.2, ASD & infantile spasms

>

>

>

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

> Get your own web address for just $1.99/1st yr. We'll help. Yahoo!

Small Business.

>

>

[Guest guest]

Hi, I just thought I would add that my son who is 2.4 years old had

bad spasms all day too, but now after two months SCD he has none.

Taurine really helped too. Also, I think a major power struggle

seems to happen between the yeast and the bad bacteria. You are

cutting there food sources out and they are not happy.

We saw a pediatric GI and while he was not really supportive he gave

us Flagyl. Firm bms in 3 days. (I keep a photo journal how gross is

that) Now we use Lactobacillus GG and Saccharomyces Boulardii. You

can read on these and see why they work well together. This is the

best I have done with his BM so far...

>

> Hi everyone

>

> I just wanted to share where we are at the moment and see if

anyone could offer any pearls of wisdom as to whether Jack's bms are

normalising.

>

> We restarted the diet with the intro diet four weeks ago now,

and he is still on cooked fruit and veg only, eggs and fish (no

dairy), and a little bit of nut butter. His diet (fruit and veg

wise) is still limited as we have taken it slowly this time (apple,

pear, peach, squash, spinach, courgette, peppers, beans, eggplant).

>

> My concern is that whilst his bms are smoother with

significantly less bits/chunks of food than before, they are still

very mushy texture, and are frequently even worse than ever. Is this

normal? Should they be 'firming up' by now?

>

> Any insights into this delightful topic gratefully received!

There has been as yet no effect on Jack's siezures which are through

the roof (60+ daily), but I'm still hoping!

>

> Also! While I'm here, do you think it would be ok to add nut

flour in now or is it still too early?

>

> Many thanks

> Anita

>

> Jack 2.2, ASD & infantile spasms

>

>

>

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

> Get your own web address for just $1.99/1st yr. We'll help. Yahoo!

Small Business.

>

>

[Guest guest]

Hi Patti

Yeah, I'm coming to the conclusion I'm going to have to order supplements in

from the US so that I can get legal ones. With regards ot the s.v. no, I don't

think it is working and at the moment it's at a low dose because we were weaning

him off it altogether, but he started having really nasty siezures (same number,

just more aggressive) and we wondered whether the s.v. was actually helping to

control the severity of his siezures. I don't know. I still feel I would like to

wean him completely and try taurine, but the doctors we're under have no

experience of supplementing with taurine and therefore wont, and whilst I can go

to a health food shop and buy it easily, I have no idea how much I should be

giving him, and no one to tell me, so we're still trying to decide what to do

about it. If it's not a 'drug', no doctors over here seem interested in trying

it!

I mentioned to you before that I wanted to lower Jack's glutamine intake,

which I know is high in meat, so I decided to try fish instead of meat and Jack

loves it. We have all sorts - kippers, skippers, salmon, bass, prawns, skate...

It also helps with calcium intake too, because in the tinned fish like sardines,

the bones are included. Lots of lovely omega 3 too!

We'll persevere and see what happens with the bms! As ever, many thanks for

your much valued input!

Take care

Anita

Patti wrote:

Anita,

For now, until you can find a totally legal acidophilus, I would not give this

current one to him.... unless you can VERIFY that the " potato starch " is ONLY in

the capsule, that you are throwing away.

I understand the dilemma with seizure meds. Katera takes Keppra (levitracetam),

and I grind up the tablets to mix in applesauce, but there is *some* starch that

we can't avoid. Since the Rx costs well over $350 a month as it is, we could

never afford to have it compounded.

We have to do what we have to do.... and just know that Elaine understood this.

When a child must take a certain medication, you just have to do the best you

can.

In Jack's case, I'm just wondering.... do you think the sodium valproate is

really helping? I know I have been round and round and round with meds that

don't work... or have actually made Katera's seizures WORSE, so I just wonder if

he's having so many, is this med helping... or ??

I know that sometimes kids will have an increase in seizures when weaning a

med.... which would tend to make you think they " need " that medication, when

it's possibly somewhat of a withdrawal effect, that will go away. Not fun,

though.

It looks like you are doing everything right with the food. I would not worry

about the seeds in the courgettes, as long as you're using small, young one. You

are peeling them? I would for now.

Why so much fish? What kind of fish?

Why no other type of meat or poultry?

Two eggs a day sounds just fine.

It may be that he just needs a bit more time.

Just wondering.... sorry to sound abrupt.... I have to type and run today....

Patti

Re: Four weeks in - advice please!

Hi Patti

He is on acidophilus, and he's on sodium valproate for his siezures.

Unfortunately both of these contain illegals. The only acidophilus we could find

here (UK) (at the moment anyway) contains some potato starch. The ingredients

label is a bit vague and the starch could actually be contained in the shell,

which we're not giving him, just the powder inside it, so that might actually be

ok, but the s.v. definitely contains maize starch and there isn't an alternative

option on this for us, but he is on a very low dose, so hopefully it's not being

too harmful.

The peppers are all peeled and deseeded. The eggplants I'm using are small ones

which don't seem to have any seeds. The courgettes do have soft seeds, but if I

removed the seed centres there wouldn't be any of it left to feed him? He

doesn't have courgettes everyday. Everything is peeled. He does eat very ripe

bananas, usually two a day (one raw, one pancakes) and baked apple every day

too. He does eat a lot of fruit in a day, which presumably will effect the

consistency of his bms, but it's his snack food - so I guess in total (eg incl

meals) he's probably having four fruits a day.

He is only eating eggs and fish for protein. Fish three times a day, and two

eggs a day.

He's still in nappies, so whether things are getting mushed up that way, I don't

know, but the consistency of his bms haven't really changed since we started,

just the lack of food bits. We have had a few occasions where there have been

solid lumps within the mush, but not on a daily basis.

So am I on the right track do you think and it's just a case of time, or is

there something wrong?

Thoughts as ever very gratefully received!

Thanks Patti

Anita

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