advice needed

[Guest guest]

Hi everyone

Last time I wrote I was on a real high because Jack had just done his first

proper poo. Alas it did not last. He did three over a week period, and then

returned to doing his ususal productions, despite the fact that I had made no

changes to his diet. Any suggestions as to why?

Also, I went to see a nutritionist to check that Jack was getting everything he

needed on the diet. Basically, he's doing great, except for, surprise surprise,

his carbohydrate intake, which is about half that of what it should be for a

child of his age. The nutritionist I saw is anti-SCD, but respected my decision

to have Jack on the diet, but he pointed out that at present, Jack is only

getting enough carbs for what is required for his brain to function, and that

there are other tissues such as the heart that also have a carb requirement. I

have reintroduced meat (Jack was just on fish) to try and improve the situation,

but the nutritionist stated that it would be practically impossible to meet

Jack's carb requirement whilst adhering to the SCD.

So dilemma time. I don't want to do anything to make Jack's situation worse. I

certainly don't want to deny his body something that it needs to function. So

what can I do to improve his carb intake? I'm doing the SCD for siezure control

and autism, and unfortunately Jack's siezures have got worse, and recently we've

seen a reemergence of autistic traits (tip-toeing, flapping, tensing) that had

all but disappeared over recent months. Where am I going wrong? I have been

adhering strictly to the diet since September (which isn't that long ago I know,

he's been SCD legal though since August) - everything is peeled, deseeded and

cooked, and he's still on nut butters, though I would love to be able to

introduce nut flour - is it too soon? Aaaaahhhh! What can I do? I know some kids

take longer to respond to the diet than others, and I guess Jack is just one of

them, but I am really worried about the carb thing.

We're getting a stool test done to try and find out exactly what is going on in

Jack's gut so maybe that will throw up some answers. He was on a probiotic which

also contained glutamine (because it's a great gut healer apparently) but the

reemergence of Jack's autistic traits seemed to coincide with its introduction

so we've stopped that for the time being to see whether he gets better or

whether it was just coincidence.

I feel like I'm groping around in the dark here! Any words of wisdom would as

ever be very gratefully received!

Thanks all!

Anita

Jack 2.6yrs, epileptic and autistic

__________________________________________________

[Guest guest]

Anita,

What else is in the probiotic you introduced? What bacterial strains? Other

ingredients?

You should be able to get plenty of carbohydrates in with SCD.... unless you

are restricting fruits, honey, carrots, etc. Squash contains quite a good dose

of carb. What about introducing green peas?

What nut butters are you using?

You are right at the time of the " famous " three-month flare, when many see a new

round of die-off. How can this be?? We assume there are some " hold-outs " that

finally give up and bite the dust. Anyway.... it is common at this point, but

temporary.

Please let us know what else is in that probiotic, though. I think I would pull

it, if I were you.

Patti

advice needed

Hi everyone

Last time I wrote I was on a real high because Jack had just done his first

proper poo. Alas it did not last. He did three over a week period, and then

returned to doing his ususal productions, despite the fact that I had made no

changes to his diet. Any suggestions as to why?

Also, I went to see a nutritionist to check that Jack was getting everything

he needed on the diet. Basically, he's doing great, except for, surprise

surprise, his carbohydrate intake, which is about half that of what it should be

for a child of his age. The nutritionist I saw is anti-SCD, but respected my

decision to have Jack on the diet, but he pointed out that at present, Jack is

only getting enough carbs for what is required for his brain to function, and

that there are other tissues such as the heart that also have a carb

requirement. I have reintroduced meat (Jack was just on fish) to try and improve

the situation, but the nutritionist stated that it would be practically

impossible to meet Jack's carb requirement whilst adhering to the SCD.

So dilemma time. I don't want to do anything to make Jack's situation worse. I

certainly don't want to deny his body something that it needs to function. So

what can I do to improve his carb intake? I'm doing the SCD for siezure control

and autism, and unfortunately Jack's siezures have got worse, and recently we've

seen a reemergence of autistic traits (tip-toeing, flapping, tensing) that had

all but disappeared over recent months. Where am I going wrong? I have been

adhering strictly to the diet since September (which isn't that long ago I know,

he's been SCD legal though since August) - everything is peeled, deseeded and

cooked, and he's still on nut butters, though I would love to be able to

introduce nut flour - is it too soon? Aaaaahhhh! What can I do? I know some kids

take longer to respond to the diet than others, and I guess Jack is just one of

them, but I am really worried about the carb thing.

We're getting a stool test done to try and find out exactly what is going on

in Jack's gut so maybe that will throw up some answers. He was on a probiotic

which also contained glutamine (because it's a great gut healer apparently) but

the reemergence of Jack's autistic traits seemed to coincide with its

introduction so we've stopped that for the time being to see whether he gets

better or whether it was just coincidence.

I feel like I'm groping around in the dark here! Any words of wisdom would as

ever be very gratefully received!

Thanks all!

Anita

Jack 2.6yrs, epileptic and autistic

__________________________________________________

[Guest guest]

>

>

> Also, I went to see a nutritionist to check that Jack was getting

everything he needed on the diet. Basically, he's doing great,

except for, surprise surprise, his carbohydrate intake, which is

about half that of what it should be for a child of his age. The

nutritionist I saw is anti-SCD, but respected my decision to have

Jack on the diet, but he pointed out that at present, Jack is only

getting enough carbs for what is required for his brain to function,

and that there are other tissues such as the heart that also have a

carb requirement. I have reintroduced meat (Jack was just on fish)

to try and improve the situation, but the nutritionist stated that

it would be practically impossible to meet Jack's carb requirement

whilst adhering to the SCD.

>

Hi,

Sorry if you've posted this before - I am sporadic in my list

reading these days. Could you say how old Jack is? How much he

weighs? WHAT he eats (and I mean specific - not just 'he eats

everything still cooked and peeled'). Does he have any food

aversions? Feeding issues? ie why is he not taking in what he needs?

I am taking your statment 'I have reintroduced meat to try to

improve the situation' meaning that you are expanding his diet

choices only (since meat is also a protien it wouldn't do diddly for

his carb intake). Also (and this is usually OT on this list but for

an ASD kiddo I think it is paramount: FISH - ALL FISH - has levels

of mercury that can be an issue for ANY child - much less an asd

one). There is a Hg/seafood link someplace - I'll forward it just

for giggles.

You nutritionist ought to be concerned that Jack is getting a

certain # of carbs per day per his needs. NOT the type (mono, di,

poly) - just the amount. So being scd ought not preclude his meeting

that intake (though there are people on altered carb anti-seizure

diets - are you on that type? - Again, I apologize if you've

mentioned this before). The reason I am asking is because we had

positive experiences at two nutritionists (one official and one a

friend). Considering the crap most kids source their carbs from,

your nutri. should be doing handstands, imo. Also, I don't quite

understand how everyhting else could be " great " if his carb intake

is so off - seems that would skew the protien and fat ratios too.

You could politely point out that (if Jack has digestive issues

that are alleviated by eating scd), the kid wasn't processing and

absorbing his non-scd food anyhow. Speaking from a mom whose three-

year-old was eating more than an adult most days and STILL losing

percentile. (much better at nearly six thankyouverymuch).

;-)

Dunno - call me cynical - just seems that there are some issues

here that involve the nutritionist specifically; not just scd. Ask

for the ratios/profiles of fats/carbs/protien for kids his

age/weight - go to google - see how those #'s compare to what you

are being told. Good luck :-)

-christine

[Guest guest]

Anita,

I'm replying to your message a second time (although I don't see that my first

one has come through the list yet), because it's just nagging at me, that this

nutritionist (who is anti-SCD) is telling you it's " impossible " to meet Jack's

carb requirements on SCD. I just don't believe this is true.

I went out searching for some information on carbohydrates and brain

development, and found an article which warns parents against LOW-carbohydrate

diets for children (now, remember... SCD is not a LOW-carb diet). It seems to

be mostly concerned with the type of nutrients usually contained in enriched

grains and fortified breakfast cereals.... foods that they feel are " kid

friendly " . Well... read it for yourself. Here is the clip I'm referring to:

<<One nutrient that's important for growing children is folate or folic acid.

(Folate is the form found naturally in foods; folic acid is the form used in

fortified foods and supplements). New cells are needed as the body increases in

size, especially during periods of rapid growth. Folate is essential for making

new cells and is required for brain growth and development of the nervous

system. Folic acid is found in many kid-friendly foods that are limited on low

carbohydrate diets, such as fortified breakfast cereals and enriched grains.

Folate is found in nutritious, carbohydrate-rich foods like oranges and beans.

It is also found in leafy green vegetables, like spinach, and in broccoli and

cauliflower. Although these types of vegetables are low in carbohydrates, they

are usually not on a child's favorite foods list. >>

So, the authors of this article are worried that if people cut enriched grains

out of their child's diet, the kid will likely not get enough folate because the

non-grain-based foods that contain folate are not foods that kids LIKE. But,

interestingly, all of the foods they mention in the last part.... oranges,

beans, spinich, broccoli and cauliflower... are legal on SCD.

Anyway, the article might be something you want to take a look at, because it

also has charts for recommended amounts of carbohydrate so you can figure out

how much Jack ought to be getting. Here's the URL:

http://www.essentialnutrition.org/lckids1.php

Plus, many SCD parents have utilized the website, www.fitday.com , where you can

set up your own custom account (free) and keep track of exactly what he's

eating. I have not used the site myself... and am not sure it's usual parameters

are set up for very young children like Jack.... so you may have to fudge the

data you input to allow it to work for you. Maybe others can chime in if they

are more familiar.

Keep in mind that many children with intractible seizure disorders are often put

on the Ketogenic diet as an anti-seizure treatment...... now, with that diet we

are talking about LOW carbohydrates. SCD is far, FAR from the low levels on

Keto. I have first hand experience with that diet since Katera was on it for

over two years. On SCD, she now gets probably ten times as much carbohydrate in

a day than she did while on Keto.... in the form of plenty of banana,

applesauce, pumpkin, butternut squash, peas, honey, yogurt, nut butters, etc,

etc.

Unless you restrict the carbohydrate foods that are allowed on SCD, I can't see

carb intake as being a problem.

Patti

advice needed

Hi everyone

Last time I wrote I was on a real high because Jack had just done his first

proper poo. Alas it did not last. He did three over a week period, and then

returned to doing his ususal productions, despite the fact that I had made no

changes to his diet. Any suggestions as to why?

Also, I went to see a nutritionist to check that Jack was getting everything

he needed on the diet. Basically, he's doing great, except for, surprise

surprise, his carbohydrate intake, which is about half that of what it should be

for a child of his age. The nutritionist I saw is anti-SCD, but respected my

decision to have Jack on the diet, but he pointed out that at present, Jack is

only getting enough carbs for what is required for his brain to function, and

that there are other tissues such as the heart that also have a carb

requirement. I have reintroduced meat (Jack was just on fish) to try and improve

the situation, but the nutritionist stated that it would be practically

impossible to meet Jack's carb requirement whilst adhering to the SCD.

So dilemma time. I don't want to do anything to make Jack's situation worse. I

certainly don't want to deny his body something that it needs to function. So

what can I do to improve his carb intake? I'm doing the SCD for siezure control

and autism, and unfortunately Jack's siezures have got worse, and recently we've

seen a reemergence of autistic traits (tip-toeing, flapping, tensing) that had

all but disappeared over recent months. Where am I going wrong? I have been

adhering strictly to the diet since September (which isn't that long ago I know,

he's been SCD legal though since August) - everything is peeled, deseeded and

cooked, and he's still on nut butters, though I would love to be able to

introduce nut flour - is it too soon? Aaaaahhhh! What can I do? I know some kids

take longer to respond to the diet than others, and I guess Jack is just one of

them, but I am really worried about the carb thing.

We're getting a stool test done to try and find out exactly what is going on

in Jack's gut so maybe that will throw up some answers. He was on a probiotic

which also contained glutamine (because it's a great gut healer apparently) but

the reemergence of Jack's autistic traits seemed to coincide with its

introduction so we've stopped that for the time being to see whether he gets

better or whether it was just coincidence.

I feel like I'm groping around in the dark here! Any words of wisdom would as

ever be very gratefully received!

Thanks all!

Anita

Jack 2.6yrs, epileptic and autistic

__________________________________________________