Lots of questions

March 4, 2003

Mac & cheese - especially the boxed kind- sets off all 4 of my kids NT or

otherwise....many problem ingredients

for us....it is a " never " food- even with enzymes.

Just a thought- D

Have you had any testing done? ( RAST, stool, etc.?)

Today was a rough day for him. For lunch I let him have Kraft mac-n-

chz and he seemed to find all sorts of trouble at school and after at

home. We aren't doing GFCF...yet. I'm still so daunted by all of

it. We do know that corn bothers him so we avoid it. Dairy doesn't

seem to offend him. Argh! This is so overwhelming sometimes!

March 4, 2003

> Just a thought- D

> Have you had any testing done? ( RAST, stool, etc.?)

Yes, we did blood work, urine, and stool testing done. I'm not sure

if we did the RAST. What would that tell us? Thanks!

Amy

March 6, 2003

> Hi all,

>

> I just started on enzymes today. We are doing Kirkman's

> DPPlV. Any thoughts on stuff I should be watching for? Our

> pediatrician is out of town, so I have to bounce all of my questions

> off of you guys! is also taking:

> Calcium

> Children's Chewable

> Vitamin C

> Cod Liver Oil

> Flax Seed

> Taurine

> L-Glutathione Cream

> Nystatin

> Grapefruit Seed Extract

> His meds are: Tegretol, Prozac, & Amitriptyline

>

> Today was a rough day for him. For lunch I let him have Kraft

mac-n-

> chz and he seemed to find all sorts of trouble at school and after

at

> home.

Mac-n-cheese can be problematic.

I would not give GSE for more than a week unless you are still seeing

benefit from it.

> Next set of questions! LOL! Does anyone have children with chemical

> allergies? If so, do you have them on supplements? If so, what?

My son tolerates basically no supplements.

> LOL! Our 6 year old is allergic to latex, nickel sulfate, neomycin

> sulfate, and potassium dichromate. We are doing more testing on the

> 24th. The doctors, of course, are iffy about supplements/vitamins

> for her.

Sounds like your child has metal toxicity issues

http://www.danasview.net/chelate.htm

Dana

March 6, 2003

In a message dated 3/6/2003 7:56:35 AM Mountain Standard Time,

danaatty@... writes:

> Sounds like your child has metal toxicity issues

>

Sheesh! I didn't even consider that. I think I'll be having a talk w/ our

pediatrician to see what she thinks we should do. Thanks Dana!

Amy

Mom and professional taxi cab driver to:

Kaiti age 8

Brooklyn age 6

age 5, PDD & SID

Sofia age 3

July 21, 2006

In a message dated 22/07/2006 02:03:59 GMT Daylight Time, cecilia76@...

writes:

Hello I'm new to this group, I just finished reading the book " enzymes for

autism " and I can't wait to get my daughter on them. We are on the GFCF diet

and I would like to eventually drop the diet.

So my questions are this:

1. I want to buy Peptizide, but I don't know if I should buy only that to

see if my daughter will tolerate it or should I buy zime prime and no phenol as

well to get better results to start?

>>>Pep or AFP is good place to start - you are best doing only one at a time

- you can read about low and slow dosing on s website - they also have

a dosing guide on the _www.houstonni.com_ (http://www.houstonni.com) site

2. Also I would like to know if the chewebles are a better option, flavor

wise, and what size are they?

>>>They taste nice - mild orange flavour but you do need more of those and

can open caps into a drink or use loose powders and that will work out less

expensive.

The chewsables are about 1cm across, like the size of a regular paracetamol

tab in the UK but don;t know if your are different. If you ring Houston you

could ask for a few for sampe so you can try it out. Lots of folks use caps or

powders on a regular basis and use chews for outings etc for ease of dosing.

Or if I should try to give her the powder from the capsules hiden in

something how bad is the flavor of those?

I'll appreciate any info you can give me.

>>>The AFP Pep, Zyme Prime and No fenol have very little taste or smell.

Good luck, HNI was a big breakthrough for us (we came of GFCF too), so much

so I am now a proud distributor for HNI in the UK

Mandi in Uk

_www.MandiMart.com_ (http://www.MandiMart.com)

July 22, 2006

No-Fenol is a specialty enzyme with only some people need. Better

wait on it and see if it is even necessary. Start with a broad-

spectrum product for a few days and then add in Peptizyde. Zyme Prime

counts as a broad-spectrum, or you can consider some of the broad-

spectrum enzymes available. Lacto would be a good choice as a broad-

spectrum because it has additional enzyme activity for dairy since

you want to eventually try to leave a GFCF diet. It also is low in

proteases and so makes a great starting enzyme for sensitive guts.

Regarding taste of enzymes, taste is always so dependent of the

person. The chewables work fabulously for some but dreadful for

others. I think the taste of the chewable AFP peptidase is 'better'

than the regular enzymes but is still noticeable. With chewables,

consider if your child is sensitive to texture as well as taste. Some

kids with oral/texture sensitivites (like mine) do not like 'stuff'

in their teeth. You can ask for a sample to try them out.

Fortunately, there are lots of choices in enzymes and forms which

just were available years ago. If you need mixing suggestions for

enzymes here are some ideas:

http://www.enzymestuff.com/discussionmixing.htm

Best wishes for success,

.

>>>> Hello I'm new to this group, I just finished reading the

book " enzymes for autism " and I can't wait to get my daughter on

them. We are on the GFCF diet and I would like to eventually drop the

diet.

> So my questions are this:

> 1. I want to buy Peptizide, but I don't know if I should buy only

that to see if my daughter will tolerate it or should I buy zime

prime and no phenol as well to get better results to start?

> 2. Also I would like to know if the chewebles are a better option,

flavor wise, and what size are they? Or if I should try to give her

the powder from the capsules hiden in something how bad is the flavor

of those?

June 9, 2008

From what I've seen here you'll be in good hands with Dr. Agin. Try to

relax until you see what she says.

As for your son's reaction, I bet he is reacting to your mood right now.

When my son was younger (2.5 yrs) we did blood work, but skipped the MRI and

EEG that we could have asked for. I followed up with EEGs right before his

6th birthday because he still had very slow progress and the sedation didn't

bother me as much as he was now older and could cooperate better and tell me

more how he was feeling. They were looking for epileptic aphasia - absence

seizures that can explain some of the speech and particularly language

issues he has. The EEGs were normal.

Miche

On Sun, Jun 8, 2008 at 7:43 PM, lndching <lindaching@...> wrote:

> Last week, I took my 28 month old son to see a pediatric neurologist

> for an evaluation. She diagnosed him with ADHD because his activity

> level is more than the average child his age, he does not play with

> toys like the average child his age, he's very curious,... She then

> said that ADHD and autism is related and that my son would be right

> outside of the norm (mild case). How is ADHD and autism related and

> what does it mean to be right outside of the norm? Does my son have

> a chance to live a decent life?

>

> The only diagnose so far for my son is that he has hypotonia (from

> the OT at Early Intervention). This doctor's diagnosis has made my

> husband and I extremely upset. She goes on further to say that my

> son's excessive drooling is not caused by hypotonia but from the

> brain. She said that she's been in the field for a long time and that

> she recognizes ADHD.

>

> She then requested my son to take blood tests (which I'm okay with)

> and a brain MRI with conscious sedation (which I'm nervous about).

> Does anyone have any thoughts regarding the brain MRI?

>

> She also mentioned several times that my son's head is big. I see

> that the blood tests that she requested checks for this issue.

>

> Yesterday, my son was lethargic and crying all day and so I took him

> to see the pediatrician. The doctor examined him and said that he is

> not sick. Then I spoke to him about the diagnose from the pediatric

> neurologist. He immediate told me that a pediatric neurologist

> cannot make a diagnosis of autism (can anyone explain why?) and he

> referred my son to a developmental neurologist. What is the

> difference between these two types of specialists? Though the

> pediatrician informed me that he is not saying that my son does not

> have autism.

>

> With regards to concerns about my son's large head size, the

> pediatrician showed me my son's chart which indicates that his head

> is normal size (towards the small size). This makes sense to me (I

> think) since his hats are usually too big for him.

>

> With regards to my son's lethargic behavior (did not make much eye

> contact with me) yesterday, is this a sign of anything? I finally

> give him some Tylenol and he slept very well. Today, he was a little

> better, slowly getting some of his energy back, and making better eye

> contact.

>

> My husband and I are very upset -- why is this happening to us?? My

> son has an appointment with Dr. Agin this week for a second opinion.

> She's a pediatric developmental neurologist -- so I think this covers

> everything right? I'm going to call her office to ask what the 3 hr.

> evaluation entails so that I know what to expect and to plan my son's

> schedule accordingly (if it's possible).

>

> Can anyone advise me if I could do anything else. Are we going in

> the right direction to help my son? I'm just so distraught right now.

>

June 9, 2008

You're going to see Dr. Marilyn Agin -sigh (of relief) To bounce off

of what just said -from what I know of Dr. Agin (let's see

she was one of my children's neuroMDs and I co authored The Late

Talker book with her and know she's awesome and 'the' neuroMD I'd

recommend in the world if I could only pick one)

....I know you are going to be in good -great hands!

Based on your email I can't think at this moment of anyone that needs

that second opinion from Dr. Agin more than your 28 month old child.

ADHD and autism are related...Drooling is a sign of brain damage...

ADHD puts you outside the norm...your son's head is too big but if

you go by the chart it's on the smaller side of normal... that sounds

like you just saw someone that was making stuff up as she went

along. Sounds like your child's pediatrician was trying to nicely

tell you just that. Of course a neurologist can typically diagnose

autism..if they have a clue.

Drooling can be caused by a number of reasons including (but not

limited to) weakness/hypotonia. In the mouth area that can be

dysarthria. It's not uncommon for motor planning, weakness and

sensory issues to all overlap. Don't let it freak you out since my

little one Tanner had all of the above and he's been mainstreamed

since kindergarten and a great student (he's now 11 but will be 12

this week!!) And ADHD does put you outside the norm! My brother

was diagnosed " hyperactivity child " by Dr. Gold who's now head of

neurology at Columbia -and he was the youngest captain, went to law

school and became the youngest partner in an International maritime

lawfirm -he's brilliant. I've been posting about my ADHD son Dakota

who was tested 99th% in school and outside of all the honors classes

should he take the one advanced placement class they offer. People

with ADHD are outside the norm because they are smarter than the

norm! )

Thank goodness you only have another week to go to finally get a real

diagnosis!

=====

June 9, 2008

Drooling is a sign of brain damage? Really?

>

> You're going to see Dr. Marilyn Agin -sigh (of relief) To bounce

off

> of what just said -from what I know of Dr. Agin (let's see

> she was one of my children's neuroMDs and I co authored The Late

> Talker book with her and know she's awesome and 'the' neuroMD I'd

> recommend in the world if I could only pick one)

>

> ...I know you are going to be in good -great hands!

>

> Based on your email I can't think at this moment of anyone that

needs

> that second opinion from Dr. Agin more than your 28 month old

child.

>

> ADHD and autism are related...Drooling is a sign of brain damage...

> ADHD puts you outside the norm...your son's head is too big but if

> you go by the chart it's on the smaller side of normal... that

sounds

> like you just saw someone that was making stuff up as she went

> along. Sounds like your child's pediatrician was trying to nicely

> tell you just that. Of course a neurologist can typically diagnose

> autism..if they have a clue.

>

> Drooling can be caused by a number of reasons including (but not

> limited to) weakness/hypotonia. In the mouth area that can be

> dysarthria. It's not uncommon for motor planning, weakness and

> sensory issues to all overlap. Don't let it freak you out since my

> little one Tanner had all of the above and he's been mainstreamed

> since kindergarten and a great student (he's now 11 but will be 12

> this week!!) And ADHD does put you outside the norm! My brother

> was diagnosed " hyperactivity child " by Dr. Gold who's now head of

> neurology at Columbia -and he was the youngest captain, went to law

> school and became the youngest partner in an International maritime

> lawfirm -he's brilliant. I've been posting about my ADHD son

Dakota

> who was tested 99th% in school and outside of all the honors

classes

> should he take the one advanced placement class they offer. People

> with ADHD are outside the norm because they are smarter than the

> norm! )

>

> Thank goodness you only have another week to go to finally get a

real

> diagnosis!

>

> =====

>

June 9, 2008

Liz I hope you didn't think I was agreeing with that! I was stating

the reasons that this parent needs to get a second (first?!) opinion

for her child. I thought about another reason the pediatrician said

the pediatric neurologist can not make a diagnosis of autism -he

probably meant 'this' pediatric neurologist (based upon all the

bizarre stuff said) can not make a diagnosis of autism.

Here's a clip from my message below:

> > Based on your email I can't think at this moment of anyone that

> needs

> > that second opinion from Dr. Agin more than your 28 month old

> child.

> >

> > ADHD and autism are related...Drooling is a sign of brain

damage...

> > ADHD puts you outside the norm...your son's head is too big but

if

> > you go by the chart it's on the smaller side of normal... that

> sounds

> > like you just saw someone that was making stuff up as she went

> > along. Sounds like your child's pediatrician was trying to

nicely

> > tell you just that. Of course a neurologist can typically

diagnose

> > autism..if they have a clue.

=====

June 9, 2008

Drooling in this group is typically due to oral motor weakness -but

here's a list of 104 other reasons for drooling.

http://www.wrongdiagnosis.com/sym/drooling.htm

=====

June 9, 2008

There is more than one reason for drooling -could be brain damage,

could be apraxia, could be a tooth ache. I'm sure there are other

things it could be.

http://www.special-needs-hope.com/cerebral-palsy-symptom.html

> >

> > You're going to see Dr. Marilyn Agin -sigh (of relief) To

bounce

> off

> > of what just said -from what I know of Dr. Agin (let's

see

> > she was one of my children's neuroMDs and I co authored The

Late

> > Talker book with her and know she's awesome and 'the' neuroMD

I'd

> > recommend in the world if I could only pick one)

> >

> > ...I know you are going to be in good -great hands!

> >

> > Based on your email I can't think at this moment of anyone that

> needs

> > that second opinion from Dr. Agin more than your 28 month old

> child.

> >

> > ADHD and autism are related...Drooling is a sign of brain

damage...

> > ADHD puts you outside the norm...your son's head is too big but

if

> > you go by the chart it's on the smaller side of normal... that

> sounds

> > like you just saw someone that was making stuff up as she went

> > along. Sounds like your child's pediatrician was trying to

nicely

> > tell you just that. Of course a neurologist can typically

diagnose

> > autism..if they have a clue.

> >

> > Drooling can be caused by a number of reasons including (but

not

> > limited to) weakness/hypotonia. In the mouth area that can be

> > dysarthria. It's not uncommon for motor planning, weakness and

> > sensory issues to all overlap. Don't let it freak you out since

my

> > little one Tanner had all of the above and he's been

mainstreamed

> > since kindergarten and a great student (he's now 11 but will be

12

> > this week!!) And ADHD does put you outside the norm! My brother

> > was diagnosed " hyperactivity child " by Dr. Gold who's now head

of

> > neurology at Columbia -and he was the youngest captain, went to

law

> > school and became the youngest partner in an International

maritime

> > lawfirm -he's brilliant. I've been posting about my ADHD son

> Dakota

> > who was tested 99th% in school and outside of all the honors

> classes

> > should he take the one advanced placement class they offer.

People

> > with ADHD are outside the norm because they are smarter than

the

> > norm! )

> >

> > Thank goodness you only have another week to go to finally get

a

> real

> > diagnosis!

> >

> > =====

> >

June 9, 2008

I realized later I misread both what you and the original poster

stated. I was alarmed because we had, at one time, excessive drooling

and were told to get wrist bands so we could teach him to wipe it

off. I was going to be very angry if while telling us to do that no

one bothered to mention brain damage. I am very sorry if I caused

confusion.

In rereading I so get why you say to go elsewhere. Alarming.

Is it just me or does there need to be some sort of subspecialty of

the different neuro disorders taught in med school? Sure, there can

be overlap but I have heard more stories than not of docs unfamiliar

with autism diagnosing it and docs familiar with it sitting on the

fence. Either way the kid loses. I have a friend in town whose child

is a puzzle. He is likely closer to autism than anything else but

there are many factors at play: different genetic stuff on both sides

and a whole lot of mercury. What he does, he does well and what he

does not do he cannot do at all. The parents outright asked a very

prominent neuro in our area if it was autism. He said " No, the child

was simply a late bloomer. " I don't know how to say this but the

things he could not do at that point were not just going to surface.

They did check titers and he is immune to everything. He is a dietary

responder but the answer is not that simple by any means. I cannot

claim to know all that is wrong with this child but some of the stuff

suggested by the DAN he is now at (and still seeing all specialists)

seem to be things that should have come up along the way...like

vision therapy and TLP. He also failed every hearing test until he

went off milk. As I understand it, the hearing tests test 6 tones and

there are something like 350? Why are they not all tested? TLP was

also suggested for this boy for that reason. His parents are trying

to address some things at 4 that should never have gone on this long.

They have been followed by a prominent GI and some others since

birth. They are not all jazzed up to do anything that would make

their child a, in their words, " guinea pig. " He was allergic to milk

by a regular allergy test yet they were told to put him back on. I

just do not understand how the system gets so broken for some kids. I

only mention this because we live near some great resources and they

were diligent about getting him to the best places.

>

> Liz I hope you didn't think I was agreeing with that! I was

stating

> the reasons that this parent needs to get a second (first?!)

opinion

> for her child. I thought about another reason the pediatrician

said

> the pediatric neurologist can not make a diagnosis of autism -he

> probably meant 'this' pediatric neurologist (based upon all the

> bizarre stuff said) can not make a diagnosis of autism.

>

> Here's a clip from my message below:

> > > Based on your email I can't think at this moment of anyone that

> > needs

> > > that second opinion from Dr. Agin more than your 28 month old

> > child.

> > >

> > > ADHD and autism are related...Drooling is a sign of brain

> damage...

> > > ADHD puts you outside the norm...your son's head is too big but

> if

> > > you go by the chart it's on the smaller side of normal... that

> > sounds

> > > like you just saw someone that was making stuff up as she went

> > > along. Sounds like your child's pediatrician was trying to

> nicely

> > > tell you just that. Of course a neurologist can typically

> diagnose

> > > autism..if they have a clue.

>

> =====

>

June 9, 2008

Thanks - forgot about the other most obvious -teeth! Here's an

old archive below which I wrote a few years ago. My oldest son had

crushed facial nerves from a traumatic birth delivery but with

therapy (which started when he was just 3 weeks old -not for the

drooling but for his torn neck muscles) and strategies that helped

are below. Of interest my son Tanner who had severe hypotonia in his

face- dysarthria -oral apraxia -he didn't have any drool issue!

From: " kiddietalk " <kiddietalk@...>

Date: Mon Oct 13, 2003 10:07 pm

Subject: Re: excess saliva

Hi diapermom 2!

You don't say your child's age since some aspects may be

developmental, but based on your email name of diapermom -I guess

either your son is young has potty delays.

I do understand your son has saliva just sitting/pooling in the

mouth and he's either not swallowing often enough, which is

also part of what can happen when a child drools too even though

your son is not drooling, or his body is producing more saliva than

he really needs. Unfortunately the former (drooling) is yet another

one that I can relate to with my oldest son, and fortunately this

too did pass!

You first want to rule out there are no medical, physical etc

reasons for too much saliva in the mouth.

http://www.alsa-or.org/treatment/Saliva

http://www.technologyandlanguage.com/presentations/drooling/

http://www.duit.uwa.edu.au/web/inclusion/disability/saliva.html

There are medications (and probably nutritional interventions as

well!) to reduce saliva in the mouth if that is the reason.

http://www.alsa-or.org/treatment/Saliva

I also read there can be psychological triggers of too much saliva -

such as nervousness. So could be a number of reasons. Again

however you are the first to mention too much saliva here...without

the

drooling part.

In addition to discussing with your child's MD, as well as

specialists such as ENTs, which I highly recommend -perhaps some of

the strategies for droolers will work for your child in the meantime?

The following are two or three archived messages from about 2 years

ago. This never came up before either because it's not common for a

child to have lots of saliva in their mouth and not drool -or most

don't want to talk about it -so the archives are on drooling.

As far as drooling -Tanner never really went thought even

the 'normal' drooping stage -Dakota made up for that big time -but

has not drooled at all for years. Therapy deals with lots of stuff,

strategies help cover what therapy misses -this is yet another

example. Hope some of the following can help.

From: "

June 9, 2008

Nope. Drooling is a sign of congestion.

Janice

[sPAM][ ] Re: Lots of Questions