Re: More energy with enzymes/No-Fenol/general

[Guest guest]

Hi

We had issues with hyperactivity when trying to start Sam on No Fenol, I

kept trying to stick it out for 3 weeks but gave up at 10 days totally exhuasted

- me not him LOL.

In a mad moment I thought what the hell, a whole cap can;t be any worse and

bingo!!! Something to consider maybe for those with behaviours on the lower

doses when starting???

Forgot all about it till you mentioned this

Mandi in UK

I was crossing my fingers b/c the first day I

went to try it, I was putting whole capsules of ZP and AFP Pep into her rice

milk and I accidentally put an ENTIRE No-Fenol in instead of the 1/4th I was

aiming for. Instead of wasting the whole drink and the other enzymes, I

took my chances and figured I would soon know whether she tolerated the

stuff. HUGE difference. HAPPY baby (and she hadn’t been particularly

[Guest guest]

Josie,

I was one of those people who was scared to death to remove dairy from my son's

diet. It was such a big part of the few things he would eat, I was scared he'd

starve. Well, we finally switched to goat's milk and got rid of the rest of the

dairy. I was shocked that he never missed a beat when we switched to goat milk.

Not a complaint at all, just happy slurping.

Within two days he was eating chicken sticks and baby fruit sauce. I was

astounded / shocked / amazed and just shy of doing cartwheels in the hallway.

We had to force the first bite of each new food into his mouth, but then he was

willing to try more. Now, he asks for chicken and fruit. His diet is still

very limited texture-wise, but at least he's eating from all the food groups and

has actually gained a pound in the last month.

Mommy to (2.5 yo, ASD)

Now if all of these improvements would only result in a breakthrough of food

selection.she is still sooooooooooooooooooooo limited as far as what she

will eat.I would be an even happier mommy than I already am. But I am

pretty happy as it is!

Josie

[Guest guest]

Josie,

I was one of those people who was scared to death to remove dairy from my

son's diet. It was such a big part of the few things he would eat, I was

scared he'd starve. Well, we finally switched to goat's milk and got rid of

the rest of the dairy. I was shocked that he never missed a beat when we

switched to goat milk. Not a complaint at all, just happy slurping.

Within two days he was eating chicken sticks and baby fruit sauce. I was

astounded / shocked / amazed and just shy of doing cartwheels in the

hallway. We had to force the first bite of each new food into his mouth,

but then he was willing to try more….

____________________________________________________________

and anyone else:

Thanks for your message. This “self-limited” diet thing is probably my

biggest stress every single day. If anyone has any advice on this matter

after reading my story below (if you can get through it – I’m wordy!!), I

would be very very appreciative

Actually b/c my daughter reacted to dairy products in my breast milk, she

never did get cow milk or really any other dairy even when she stopped

nursing at 16 months (she is 2 ½ now). We went straight to rice milk. Of

course b/c people (and our ped) told us she would grow out of it, we did

gradually let her have a few dairy…like organic yoghurt w/live cultures.

She “seemed” to tolerate it just fine, and it was such a good delivery

method for the extra probiotic I was giving her!!

She also reacted to wheat in my breast milk and so I was freaked out about

introducing that as well. We went slowly w/gluten items in general (at the

time I didn’t know they had a name for the diet I was on while nursing! –

GFCF) and she seemed ok with them…and by the time we realized we had a

problem, she was beginning to eliminate other foods.

Here’s the thing, even though she self-limited and it drove me absolutely

nuts, I did manage to get a reasonably (as far as these things go) balanced

diet into her. She drank enriched Rice Milk. She ate eggs (no known

problem with those) and waffles (whole wheat – only one brand though;

rejected others on site), and a few cereals (the “worst” one she ever ate

was Cheerios; she’s never had a sugary one) a whole grain bread that was

filled with protein (4gms per slice) and minerals and contained things like

whole wheat berries and lentil flour etc, organic yoghurt (though she

eliminated down to one flavor and brand and could tell others on site).

When she was first starting to get picky (more than a year ago now), I was

able to grind up whatever we were eating (vegetables, meats etc) and make

tiny little open-faced sandwiches out of the “thick” combo. Then she

eliminated that too. And then she eliminated the fruit purees. What she

has never eliminated is pasta in any shape or form (except the long

spaghetti ones); and she had no problem when we switched to rice pasta 6

months ago (again, losing some nutritional value that the enriched wheat

ones have). And since she likes the red sauce, I add all kinds of pureed

meat and vegetables to the mix – every single day. She always loved French

fries (Cascadian Farm organic if I wasn’t making my own) and avocados and

she would eat the occasional piece of broccoli whole. I had also found a

number of snack food type things that had nutritional value. I even found a

Dorito looking chip that has 5grams/protein per serving, tons of flax seeds,

no hydrogenated oils and non-GMO corn and soy. This was all before I even

considered GFCF.

By the time I read ’s book, we were about 80% GFCF with my daughter. I

had taken away the whole wheat snack foods, the bread, the waffles, etc etc

and all the cereals that had wheat as a main ingredient (as opposed to wheat

contamination and barley malt like Rice Chex or something like that). To

tell you the truth it wasn’t even that hard, b/c it wasn’t like there were a

bunch of things she wanted. She’s never even eaten a cookie or cupcake or

piece of candy or ice cream or any typical junk food…or even any typical

toddler meal. In part this was b/c we never offered her junk in the

beginning, but even once she had opportunities at parties and play dates and

restaurants and whatnot, she just never even would try the stuff. It is

still this way, though she is very social. I don’t have to worry about

infractions yet, even if she is somewhere w/o her enzymes b/c she is just

not interested in something she hasn’t already had or tasted or recognizes.

She tried an animal cracker once and spit it out. She wouldn’t even try the

gluten free waffles. She wont even drink juice (and if she “accidentally”

gets some juice in an opaque sippy cup, she gets MAD, she doesn’t go “Oooh.

Yum. What have I been missing???”)

I joined the GFCF board b/c I wanted to know whether people had found that

once they got truly 100% GFCF, their child’s taste buds had expanded. To me

this would have been the only incentive to eliminate what were some of the

most nutritious foods that were in her diet. I also considered going

“straight” to enzymes as some people here have done. Of course on GFCF

board, I heard from a number of people who told me that within a few days…or

weeks…or maybe a month…of being really and truly GFCF, their kid’s taste

buds magically expanded and they would try all the GFCF replacement foods

and were eating everything. I decided to give it a try for that reason

alone, and I would say we were “really” GFCF for about a month (some would

say not long enough), but there was no improvement in the food area (though

we did see improvements in language and gross motor skills). In fact, b/c

of what I had taken away, and the fact that she wouldn’t add anything new,

her diet was MORE limited. And though everyone who responded to my post had

told me that their kid had magically added foods after going GFCF, I was

beginning to read more and more posts from people whose kid had been GFCF

for months and months and months and was still only eating one or two

foods..and was losing weight…and etc etc. I didn’t like the sounds of that

one bit. My daughter had always been limited, but the food she DID eat was

“healthy” (at least for non-reactive people) and she did eat a lot of it,

and her weight was good, etc etc.

Since her stools had also regressed (we’d achieved good ones w/work on yeast

and a broad spectrum enzyme that we’d bought before reading ’s book),

and we had also started Houston enzymes (AFP Pep and ZP) around the same

time (bad move to start two things at once – not the 2 enzymes I mean the

100% GFCF and the new enzymes), I ultimately decided to do a little “gluten”

challenge and add a couple of “trace” gluten foods back in that had fiber in

them, and also the Rice Dream Rice Milk w/trace gluten b/c frankly I think

it is a better product overall in terms of its ingredients and what it’s

enriched with. No regression. Happy baby – at least so far and I have been

watching like a hawk. In fact, she has been a dream all around. GREAT

temperament. GREAT on every single marker anyone would want to mention or

measure…except food.

I should say that there are no particular textures or colors or temperatures

she avoids (the things on her “ok” list run a wide variety). And she is

happy to feed ME whatever foods she wont eat, or touch them, and she knows

all of the names of the foods and when I ask her why it is good to eat new

foods she says “to make tummy happy”, and she likes it when her little

friends eat different things. Other than what is going on with her food

selection, she really doesn’t have any autistic behaviors, and we don’t have

that diagnosis. And with the enzymes and the GFCF overall and some

supplementation what problems she does have – sensory integration and a

speech delay, and leaky gut for sure – have been evaporating one by one.

We have never tried to “force” feed her - not that, at this point, it hasn’t

crossed our minds. When she first started eliminating foods, she was still

of an age that she would occasionally accept being spoon fed. Every now and

then we would “trick” her thinking she would be “surprised” by the new

flavor and then like it and want more. Each and every time we tried, it was

a disaster and she cried and then wouldn’t finish the meal period, and my

husband said she gave him such a look of betrayal that he could never

conceive of doing it again. Also, even now, I always eat meals with her

(even if I am not having my real meal at the same time) and I always eat

foods I would like her to try. And very very occasionally, I can get her to

“lick” something new before I give her the food she is looking for (but if I

push it too much she just says “no food” and skips the whole meal and

happily goes off to play or to bed or whatever). Also, we have had no

success making a game of it. If she has some food she likes, she wont share

it “Can mommy have a bite of your pasta?” NOOOOOOOO!!! So when I am eating

something I would like her to try, I will sometimes turn it all into a game

and giggle and say “No WAY you can have a bite of my pear (which I even cut

into appealing shapes of things she likes). It’s MINE. I am NOT going to

share it.” And she thinks this is REALLLY funny and will laugh and

“pretend” to steal my food…but she won’t ever eat it. She is totally

engaging and plugged in and interactive and has a great sense of humor about

most things – but she will not BUDGE on the food thing.

When it comes to supplements, however, we do force her and that has worked

out ok. I remember when we first started the fish oil, about 6 months ago,

it took 2 of us to hold her down while I squirted the stuff into her mouth.

She was miserable but recovered pretty quickly – and after about 2 weeks of

doing it that way, she began to accept that it was going to happen and now

when I tell her it is time, she comes in and helps me get it ready. Not

that she LIKES it mind you, but she also can answer me when I ask her if she

knows why we do it: “More words mommy!!” (when we first started 6 months

ago, she would just nod her head yes and go MMMmmmmmmm, the sound she made

for yes; she didn’t have intelligible words. Now she has so many that I

long ago stopped counting, they are spontaneous; they come in 2-6 word

combos and full sentences and it is amazing and wonderful. Now, at 32

months, we imagine she will reach “age level” in short order.

I have Brain Child samples in my cabinet and that’s the next thing we’re

going to start (this week actually). So maybe the minerals will help

w/taste buds, the zinc in particular (I am starting with ultra sensitive but

have a sample of the Spectrum II on order as well)

And we have an appointment with Dr. Cave in February to do some of

the blood/stool/hair/urine testing we’ve never done.

And like I said (and given how severe the food thing you may not be inclined

to believe me), if you didn’t see her eat (and you had no way of peering

into her intestines!) you wouldn’t necessarily know she had a “problem” at

all at this point.

So thanks to those of you who have managed to read all the way to the end of

this, and to anyone who has a suggestion. I apologize for the length. This

is just one of those subjects that is driving me NUTS – and any advice would

be much appreciated.

Josie

Now, he asks for chicken and fruit. His diet is still very limited

texture-wise, but at least he's eating from all the food groups and has

actually gained a pound in the last month.

Mommy to (2.5 yo, ASD)

Now if all of these improvements would only result in a breakthrough of

food

selection.she is still sooooooooooooooooooooo limited as far as what she

will eat.I would be an even happier mommy than I already am. But I am

pretty happy as it is!

Josie

[Guest guest]

Josie,

I can definitely feel your pain! It sounds like your daughter is getting good

nutrition and is gaining weight well, so you're in a much better position that

we were. My poor guy was in the 10th percentile for his height and the doctors

at Kennedy Krieger were considering him for an 8 week all day, M-F food program.

Hopefully now we can just do outpatient or skip the whole thing if he keeps

gaining weight. The waiting list is really long, so I hope he keeps gaining

before his name comes up!

It sounds like you've been seeing a lot of positive progress with everything

you've been doing, so I would stick with that. As she gets more and more

comfortable and can express herself better, there is always hope that she'll try

one or two new things. I heard somewhere that it takes a NT kid 12 tries at a

food before it becomes acceptable and that it can be ten times that many for a

kid on the spectrum. So, maybe one day she'll surprise you.

This is just one of those subjects that is driving me NUTS - and any advice

would

be much appreciated.

Josie