Re: Just when I thought things were getting better....

[Guest guest]

My advice is not to doubt yourself. I think generally speaking, a mother has

much more detailed and accurate observation of her child than any school

teacher, friend neighbor or relative, no matter how kind they maybe. If you

think there are improvements, then chances are that they really are. If your

child is using language more spontaneously, that is great and a cause for

celebration not to mention encouragement. Do you really trust his teacher?

If in your shoes, I would share with the school teacher the improvements that

I'd observed and include in his IEP what areas they need to work on. I would

stay on you regime of diet and supplements and actually stop the infractions.

The reason is that you may see much more improvement if you try the diet

without infractions and I think it is worth trying for four full months. This

is the length on the average that gluten gets out of the body. Also a child

the age of yours can get used to the diet easier and by introducing the

infractions, then he will have harder time making the long term adjustment.

For us the diet was far more worthy than any temporary pleasure of any food

and the more problem food we removed, the more my son's appetite and food

choices expanded.

Best,

Haleh

P.S. if you chose to continue infractions, make sure you give ample AFP

Peptizide. For us enzymes are can not be used as the alternative to GFCFSF but

a complement to the diet.

--- mpmesser <mpmesser@...> wrote:

> I am looking for a little advice.

>

> My son is taking:

> 3/4 tsp Brainchild Supersensitive 3x/day

> 1 tablet DMG

> 1/2 tsp CLO

> NoFenol with each meal

> 1/2 cap Peptyzide with each meal

> 1tsp zinc

> 1/4 tsp folinic acid (just started)

> 1 nature's way kids acidophillus

> GF/CF with some infractions

>

> I felt language was improving and he seemed more " with it " over all. I saw

> regression in

> repeated tv shows but that was interspersed with some really good

> spontaneous language.

> He was even asking questions.

>

> I just got a note from his teacher saying they are not seeing any

> improvements at all with

> the diet. I am wondering if I think I am seeing something that doesn't

> exist.

>

> Any thoughts on something I should be adding/taking away? Any input is

> appreciated.

> Michele

> 3.8

>

>

>

>

[Guest guest]

> My son is taking:

Did you add these things one at a time, to be sure he tolerated them?

> 3/4 tsp Brainchild Supersensitive 3x/day

Is this vitamins, minerals, or both?

> I felt language was improving and he seemed more " with it " over all.

I saw regression in

> repeated tv shows but that was interspersed with some really good

spontaneous language.

> He was even asking questions.

>

> I just got a note from his teacher saying they are not seeing any

improvements at all with

> the diet.

Do you think this might be just because his teacher does not want to

deal with it during the day?

Did the teacher report regression, or only " no change " ?

You might try adding Zyme Prime, see if you notice any changes with that.

Dana

[Guest guest]

I hear your frustration. After three months GFCF, our son crashed,

and we have never been able to get those improvements back. I am

ready to give up the diet entirely, and focus on enzymes again for

another 6 week period. This time I hope, If I'm consistent with the

enzymes, and I feed him wholesome foods without sugar and other

things allowed on GFCF, I may finally see a difference.

BUT, it is my experience that Mom's are always more aware of what's

going on than schools. AND that my son's more problematic behaviors

come out at home than at school!! He loves the routine of

school,and all the extra aides and attention, but home is where he

let's down his gaurd and meltsdown.

> I am looking for a little advice.

>

> My son is taking:

> 3/4 tsp Brainchild Supersensitive 3x/day

> 1 tablet DMG

> 1/2 tsp CLO

> NoFenol with each meal

> 1/2 cap Peptyzide with each meal

> 1tsp zinc

> 1/4 tsp folinic acid (just started)

> 1 nature's way kids acidophillus

> GF/CF with some infractions

>

> I felt language was improving and he seemed more " with it " over

all. I saw regression in

> repeated tv shows but that was interspersed with some really good

spontaneous language.

> He was even asking questions.

>

> I just got a note from his teacher saying they are not seeing any

improvements at all with

> the diet. I am wondering if I think I am seeing something that

doesn't exist.

>

> Any thoughts on something I should be adding/taking away? Any

input is appreciated.

> Michele

> 3.8

>

[Guest guest]

I had to weigh in on this as I once had a teacher tell me that she was

certain the diet was doing absolutely nothing for Jamey. I was stunned,

because I

felt otherwise and started to question myself---was I seeing what I wanted

to see?? Well, about 15 minutes later, I asked her point blank " So, when I

talk to his doctor, I should tell him that you see absolutely no changes in him

whatsoever due to this diet? " She did a complete 180. Said yes, the diet

is helping, it's just hard for him. I was again stunned. Go with your gut.

Don't let someone talk you out of what you know...

[Guest guest]

Ok if you want to give up GFCF; but I don't know who in the world

told you you could have sugar on the GFCF diet! I think sugar is

the absolutely worst thing for ASD kids. If my kids eat any of it

they will regress for a week. I've had them on GFCF/no sugar or

sweeteners/no peanuts for two months now, and I'm seeing signs of

improvement. Less hyperactivity, less aggressiveness/defiance, less

destructiveness, and less weepiness. I'm giving them enzymes as

well as keeping them on the diet. Yesterday I started to see signs

that two of them may be able to handle casein as long as they take

enzymes with it. One month ago they could not handle casein whether

they took enzymes with it or not.

--

>

> I hear your frustration. After three months GFCF, our son

crashed,

> and we have never been able to get those improvements back. I am

> ready to give up the diet entirely, and focus on enzymes again for

> another 6 week period. This time I hope, If I'm consistent with

the

> enzymes, and I feed him wholesome foods without sugar and other

> things allowed on GFCF, I may finally see a difference.

>

> BUT, it is my experience that Mom's are always more aware of

what's

> going on than schools. AND that my son's more problematic

behaviors

> come out at home than at school!! He loves the routine of

> school,and all the extra aides and attention, but home is where he

> let's down his gaurd and meltsdown.

>

>

>

>

>

> > I am looking for a little advice.

> >

> > My son is taking:

> > 3/4 tsp Brainchild Supersensitive 3x/day

> > 1 tablet DMG

> > 1/2 tsp CLO

> > NoFenol with each meal

> > 1/2 cap Peptyzide with each meal

> > 1tsp zinc

> > 1/4 tsp folinic acid (just started)

> > 1 nature's way kids acidophillus

> > GF/CF with some infractions

> >

> > I felt language was improving and he seemed more " with it " over

> all. I saw regression in

> > repeated tv shows but that was interspersed with some really

good

> spontaneous language.

> > He was even asking questions.

> >

> > I just got a note from his teacher saying they are not seeing

any

> improvements at all with

> > the diet. I am wondering if I think I am seeing something that

> doesn't exist.

> >

> > Any thoughts on something I should be adding/taking away? Any

> input is appreciated.

> > Michele

> > 3.8

> >

>

[Guest guest]

If you see it, it's there. Don't tell others what you are doing or why. All they

need to know is, these are his dietary restrictions. Period. No questioning my

motives, no commentary please, other than to let me know if there is a problem.

Ex. I want a teacher to tell me if he's holding himself (might be a urinary

tract infection or yeast issue). I want a teacher to tell me if he blew up and

got angry or emotional (again might be yeast, might mean he's getting sick).

However, I do not want to hear what you think is or isn't working. You do not

know his sleep patterns, you don't know about his obsessiveness diminishing, you

don't realize he's not chewing on his clothes any longer....etc. Once you put

these teachers in their place, they're not likely to challenge you any more.

Please realize that what you are doing is still considered on the fringe, and

you'll get little support outside of this group, at least that's been my

experience. No matter how well meaning, how well intentioned, how heartfelt,

their commentary (other than to relay facts about his/her day) may end up

wearing you down. What you are doing is neither cheap nor easy, don't set

yourself up for further hardship. We all want to feel reaffirmed, I understand

that, and some really great moments have been when teachers or other parents

have commented on how well ph did something. But the best moments have been

when I've witnessed ph doing something great he couldn't before, or when

ph has stopped doing something that was socially unacceptable. Good luck to

you, you keep searching for your kid's answers.

Just when I thought things were getting better....

I am looking for a little advice.

My son is taking:

3/4 tsp Brainchild Supersensitive 3x/day

1 tablet DMG

1/2 tsp CLO

NoFenol with each meal

1/2 cap Peptyzide with each meal

1tsp zinc

1/4 tsp folinic acid (just started)

1 nature's way kids acidophillus

GF/CF with some infractions

I felt language was improving and he seemed more " with it " over all. I saw

regression in

repeated tv shows but that was interspersed with some really good spontaneous

language.

He was even asking questions.

I just got a note from his teacher saying they are not seeing any improvements

at all with

the diet. I am wondering if I think I am seeing something that doesn't exist.

Any thoughts on something I should be adding/taking away? Any input is

appreciated.

Michele

3.8

[Guest guest]

>

> I hear your frustration. After three months GFCF, our son crashed,

> and we have never been able to get those improvements back. I am

> ready to give up the diet entirely, and focus on enzymes again for

> another 6 week period. This time I hope, If I'm consistent with the

> enzymes, and I feed him wholesome foods without sugar and other

> things allowed on GFCF, I may finally see a difference.

>

,

I know of a few moms who had the same experience. I was one of them.

My son responded so well to GFCF I thought we would have him recovered

in a few months. HA!

We now give him a varied diet with enzymes. We've never gotten back

to that one time high about 6 weeks into GFCF. But, now that we're

using many supps, chelating, and starting to address viral issues,

we're seeing improvements again.

I think that for most of our kids, they need many interventions. Diet

is just one of them.

Best wishes,

Anita

[Guest guest]

Couple things come to mind...

He may have developed different intolerances and they may not be helped with

enzymes taken, you can do blood or muscle testing to see about

allergies/intolerances.

He may have infractions that you don't know about...at school...if they aren't

supportive they may not pay attention or bother to tell you, there are also

other sources of gluten like in playdoh and some plastics. If he is super

sensitive this may prevent good progress,

He may need more enzymes, do you use Zyme Prime?

May need higher doses of enzymes,

Something else may be going on as well like viral issues or yeast,

You are likely not seeing something, our kids have a way of improving and then

trying our patience by changing!!

Wishing you lots of luck!!!

>

>

>

> > I am looking for a little advice.

> >

> > My son is taking:

> > 3/4 tsp Brainchild Supersensitive 3x/day

> > 1 tablet DMG

> > 1/2 tsp CLO

> > NoFenol with each meal

> > 1/2 cap Peptyzide with each meal

> > 1tsp zinc

> > 1/4 tsp folinic acid (just started)

> > 1 nature's way kids acidophillus

> > GF/CF with some infractions

> >

> > I felt language was improving and he seemed more " with it " over

> all. I saw regression in

> > repeated tv shows but that was interspersed with some really

good

> spontaneous language.

> > He was even asking questions.

> >

> > I just got a note from his teacher saying they are not seeing

any

> improvements at all with

> > the diet. I am wondering if I think I am seeing something that

> doesn't exist.

> >

> > Any thoughts on something I should be adding/taking away? Any

> input is appreciated.

> > Michele

> > 3.8

> >

>

[Guest guest]

It looks like you are giving quite a bit of folinic, but not B12...I don't know

how much is in

the Brainchild vitamins, but some children cannot absorb B12 orally. But the

folinic will

keep the child from developing a macrocytic anemia which might otherwise tip off

your

doctor that he might be B12 deficient (or not). The best test for that is

urinary methyl

malonic acid. Lots of kids are benefiting from methyl B12 shots, I heard at the

seminar

recently.

That's just an idea...does he eat a fair amount of meat?

Peace,

Kathy E.

>

> I am looking for a little advice.

>

> My son is taking:

> 3/4 tsp Brainchild Supersensitive 3x/day

> 1 tablet DMG

> 1/2 tsp CLO

> NoFenol with each meal

> 1/2 cap Peptyzide with each meal

> 1tsp zinc

> 1/4 tsp folinic acid (just started)

> 1 nature's way kids acidophillus

> GF/CF with some infractions

>

> I felt language was improving and he seemed more " with it " over all. I saw

regression in

> repeated tv shows but that was interspersed with some really good spontaneous

language.

> He was even asking questions.

>

> I just got a note from his teacher saying they are not seeing any improvements

at all

with

> the diet. I am wondering if I think I am seeing something that doesn't exist.

>

> Any thoughts on something I should be adding/taking away? Any input is

appreciated.

> Michele

> 3.8

>

[Guest guest]

I second this opinion. We have had terrible support even from very good

teachers. First

they complain that we are feeding the child " junk food, " because he has severe

feeding

problems and won't eat anything but crunchy textured food and plain hamburger

(the

latter probably saved him from severe B12 deficiency)...then they give you the

third degree

about the enzymes, I had to go through a seventeen step procedure to get them

administered in school and still have to fill out forms every month in

quadriplicate...they

want to know why he still isn't eating more different foods...the form asks for

reason for

medication and I put " poor digestion. " So, after I explain to the pediatrician,

the

pharmacist (pharmacy label required), the registered dietician at the Health

Dept. and the

Nutrition Coordinator, I was given the third degree by the teacher aide!!

They say they never saw him have any tummy ache, etc. ad nauseam. But it was so

nice

the other day when one of the other kids came up to me when I went to pick him

up and

said, " Benny ate a BIG bite of strawberry today and he almost threw up but he

swallowed

it!! " Funny, the other kids can see the problem!

Then they give him gluten-free foods that I already told the registered

dietician he

wouldn't eat, in order to get him to " try more foods, " and the teacher tells me

that she

thinks he is losing weight because he isn't eating all day and I go and find

that the

nutrition coordinator has been on vacation for three weeks, there isn't anybody

else

allowed to buy food, no outside food is allowed in, and I finally threaten legal

action and

went and got corn chips ( " junk food " ) he will eat from the cook. By that time

the teacher

wouldn't talk to me and I had to go demand a meeting with an administrator

(sigh)...but

this is a kid who is at risk for diabetes (mother had gestational diabetes), and

what are

they gonna do if he hits somebody because he's hypoglycemic?? Blame him, that's

what.

It's not exactly supportive. It can even be infuriating. But they are doing the

best that they

can. They just do not understand. When I was talking to the administrator I

started for a

moment to explain how the anti-tissue transglutaminase enzyme affects the

Purkinje cells

in the cerebellum...until I kind of saw her eyes glaze over, but she did seem to

decide after

that maybe I did know what I was talking about, and they didn't. The teacher is

talking to

me again, that's the good news.

Peace,

Kathy E.

>

> If you see it, it's there. Don't tell others what you are doing or why. All

they need to

know is, these are his dietary restrictions. Period. No questioning my motives,

no

commentary please, other than to let me know if there is a problem. Ex. I want a

teacher to

tell me if he's holding himself (might be a urinary tract infection or yeast

issue). I want a

teacher to tell me if he blew up and got angry or emotional (again might be

yeast, might

mean he's getting sick).