Just Starting Out

[Guest guest]

We used the Loreal kids shampoo (strawberry)....it smelled like a

strawberry sock then.....LOL

Meagan

Nolan DOC GRAD 3/06

>

> My son, Jace, is almost six months old and started using a Starband

> the 14th of July. Friday will be two weeks and things are going well,

> but the helmet is becoming smelly. We live in Ga and it is HOT of

> course but I greatly cut back on our outside time and it still

smells.

> I am cleaning it every evening with alch and letting it dry, but

> without much help. I am looking for ideas, tips and other info to

help

> us get through the next four months!

>

> Jace has asymm ears (left forward) and flattening on his left side.

He

> also has Tort. on his neck and does PT every other week.

>

[Guest guest]

Our ortho told us to use what ever baby

shampoo we use to wash Chloe Olivia’s head to wipe the inside of helmet

with, then use alcohol. Our ortho did say not to get it wet. I think it can be

a philosophy issue.

Thanks and have a great day,

aleyfamily@...

From:

Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Sandy

Sent: Sunday, July 30, 2006 9:38

PM

Plagiocephaly

Subject: Re: Just

starting out

Do me a favor though. Maybe you should call

Orthomerica to make sure

that shampoo and water is ok in the STARband. As far as I know it is

not ok to put that in the foam. Just want to make sure.

Sandy Willow's mom

> > > >

> > > > The 99% alcohol combined with washing my son's hair with

Suave

> > > children's

> > > > shampoo (blueberry scent) seems to do a good job at keeping

> the

> > > smell at

> > > > bay. On days when it is warm and he sweats more you can

smell

> > it

> > > a bit

> > > > more.

> > > >

> > > > Molly

> > > >

> > > > Re: Just starting out

> > > >

> > > >

> > > > I am going to ask the Tech at Children's Hospital of Atlanta

> > when

> > > we

> > > > go Friday for his adjustment. Maybe that will clear it

up?!?

> I'd

> > > > like to think I can do more things than the alcohol, but if

> not,

> > > > I'll certainly move up to 99%. Does that handle the odor

for

> > you,

> > > > Molly?

> > > >

>

[Guest guest]

My daughter was diagnosed right after she turned 2 with PDD-NOS,

hypotonia and apraxia. She's now 4, and has no remaining issues. The

things that really helped her language were liposomal glutathione (1/2

tsp 2x/day, wellnesshealth.com) and carnaware (carnaware.com, 2 caps

2x/day). Methyl B12 injections were important too. The gfcf diet,

ABA, EFAs (omegabrite.com), multi-vitamin and mineral supplement,

extra zinc/magnesium/calcium, B complex, folinic acid helped as well.

>

> I have a 5 year old son who is dx with PDD, global hypotonia and

> Apraxia. I have never considered EFA's and EPA's until i got a post

> from antoher support group about the dramatic effects of them. We

> have been on this road (in therapy in school, etc) for 3 years and

> progress is SLOW!! I am now at a point i will try anything to get

> quicker results. I'm considering adding thes supplements, i just

> don't know where to start. How do i get started? I live in Houston

> Texas. Any advise is appreciated.

>

> Thanks,

> Tami

>

[Guest guest]

Hi

I am curious how you were able to get hooked up with liposomal glutathione,

b12 injections, omegas etc. Was it from your own research/reading/websites and

list serves? Or did you work with a metabolic doc? I am alway surprised with

some of the very interesting information people have on approaches. I have a

daughter dx w/ rare neuro condition and it is a dx based on cluster of symptoms

but not scientific evidence/test.

She had what at the time, seemed like very extensive workups b/c she was very

sick in her 1st 4yrs but 'everything' was normal. I wonder if there are other

more complete workups to be done.

thanks

karen v

maryebe <eberlein@...> wrote:

My daughter was diagnosed right after she turned 2 with PDD-NOS,

hypotonia and apraxia. She's now 4, and has no remaining issues. The

things that really helped her language were liposomal glutathione (1/2

tsp 2x/day, wellnesshealth.com) and carnaware (carnaware.com, 2 caps

2x/day). Methyl B12 injections were important too. The gfcf diet,

ABA, EFAs (omegabrite.com), multi-vitamin and mineral supplement,

extra zinc/magnesium/calcium, B complex, folinic acid helped as well.

>

> I have a 5 year old son who is dx with PDD, global hypotonia and

> Apraxia. I have never considered EFA's and EPA's until i got a post

> from antoher support group about the dramatic effects of them. We

> have been on this road (in therapy in school, etc) for 3 years and

> progress is SLOW!! I am now at a point i will try anything to get

> quicker results. I'm considering adding thes supplements, i just

> don't know where to start. How do i get started? I live in Houston

> Texas. Any advise is appreciated.

>

> Thanks,

> Tami

>

[Guest guest]

Hi -

We had her testing done through a Dan doc, and then some of it was

later redone through an osteopathic doctor. We did a nutritional

analysis test (Metametrix ION), a stool analysis (this is available

through many labs - the first one we did was with Great Smokies Lab),

a food sensitivity panel, as well as basic stuff like a thyroid panel

and chem panel. The supplements were based on the ION results

primarily. Methyl B12 injections have proved to be generally very

effective with children with ASD, so that was further incentive to try

the shots. She now gets a squirt of methyl B12 nose spray every night

instead. I suspect a lot of DOs, or MDs with a more natural treatment

approach, would do this testing.

I read several autism biomed - it's important to keep up

with what other parents are trying and what has worked for other kids.

> >

> > I have a 5 year old son who is dx with PDD, global hypotonia and

> > Apraxia. I have never considered EFA's and EPA's until i got a post

> > from antoher support group about the dramatic effects of them. We

> > have been on this road (in therapy in school, etc) for 3 years and

> > progress is SLOW!! I am now at a point i will try anything to get

> > quicker results. I'm considering adding thes supplements, i just

> > don't know where to start. How do i get started? I live in Houston

> > Texas. Any advise is appreciated.

> >

> > Thanks,

> > Tami

> >

>

>

>

>

>

>

>

[Guest guest]

My daughter was diagnosed right after she turned 2 with PDD-NOS,

hypotonia and apraxia. She's now 4, and has no remaining issues. The

things that really helped her language were liposomal glutathione (1/2

tsp 2x/day, wellnesshealth.com) and carnaware (carnaware.com, 2 caps

2x/day). Methyl B12 injections were important too. The gfcf diet,

ABA, EFAs (omegabrite.com), multi-vitamin and mineral supplement,

extra zinc/magnesium/calcium, B complex, folinic acid helped as well.

>

> I have a 5 year old son who is dx with PDD, global hypotonia and

> Apraxia. I have never considered EFA's and EPA's until i got a post

> from antoher support group about the dramatic effects of them. We

> have been on this road (in therapy in school, etc) for 3 years and

> progress is SLOW!! I am now at a point i will try anything to get

> quicker results. I'm considering adding thes supplements, i just

> don't know where to start. How do i get started? I live in Houston

> Texas. Any advise is appreciated.

>

> Thanks,

> Tami

>

[Guest guest]

Hi

I am curious how you were able to get hooked up with liposomal glutathione,

b12 injections, omegas etc. Was it from your own research/reading/websites and

list serves? Or did you work with a metabolic doc? I am alway surprised with

some of the very interesting information people have on approaches. I have a

daughter dx w/ rare neuro condition and it is a dx based on cluster of symptoms

but not scientific evidence/test.

She had what at the time, seemed like very extensive workups b/c she was very

sick in her 1st 4yrs but 'everything' was normal. I wonder if there are other

more complete workups to be done.

thanks

karen v

maryebe <eberlein@...> wrote:

My daughter was diagnosed right after she turned 2 with PDD-NOS,

hypotonia and apraxia. She's now 4, and has no remaining issues. The

things that really helped her language were liposomal glutathione (1/2

tsp 2x/day, wellnesshealth.com) and carnaware (carnaware.com, 2 caps

2x/day). Methyl B12 injections were important too. The gfcf diet,

ABA, EFAs (omegabrite.com), multi-vitamin and mineral supplement,

extra zinc/magnesium/calcium, B complex, folinic acid helped as well.

>

> I have a 5 year old son who is dx with PDD, global hypotonia and

> Apraxia. I have never considered EFA's and EPA's until i got a post

> from antoher support group about the dramatic effects of them. We

> have been on this road (in therapy in school, etc) for 3 years and

> progress is SLOW!! I am now at a point i will try anything to get

> quicker results. I'm considering adding thes supplements, i just

> don't know where to start. How do i get started? I live in Houston

> Texas. Any advise is appreciated.

>

> Thanks,

> Tami

>

[Guest guest]

Hi -

We had her testing done through a Dan doc, and then some of it was

later redone through an osteopathic doctor. We did a nutritional

analysis test (Metametrix ION), a stool analysis (this is available

through many labs - the first one we did was with Great Smokies Lab),

a food sensitivity panel, as well as basic stuff like a thyroid panel

and chem panel. The supplements were based on the ION results

primarily. Methyl B12 injections have proved to be generally very

effective with children with ASD, so that was further incentive to try

the shots. She now gets a squirt of methyl B12 nose spray every night

instead. I suspect a lot of DOs, or MDs with a more natural treatment

approach, would do this testing.

I read several autism biomed - it's important to keep up

with what other parents are trying and what has worked for other kids.

> >

> > I have a 5 year old son who is dx with PDD, global hypotonia and

> > Apraxia. I have never considered EFA's and EPA's until i got a post

> > from antoher support group about the dramatic effects of them. We

> > have been on this road (in therapy in school, etc) for 3 years and

> > progress is SLOW!! I am now at a point i will try anything to get

> > quicker results. I'm considering adding thes supplements, i just

> > don't know where to start. How do i get started? I live in Houston

> > Texas. Any advise is appreciated.

> >

> > Thanks,

> > Tami

> >

>

>

>

>

>

>

>

[Guest guest]

>

> any advice? I'm doing a phone consult with Dr. Sullivan on Monday

to

> get a script.

>

==========

Dr. Sullivan is top notch. Just make sure you know of the time zone

he's in and if you're in a different time zone call him at the time he

set on his time zone schedule.

He's one of our best phone consult LDN prescribing docs but he only

takes people with MS.

[Guest guest]

-

Can I have Dr. Sullivan's number for a phone consult as well...I need something, I am not improving,this MS episode is thee worst I have ever had

I would appreciate it so much getting his number...oh and how much does he charge for the consult?

you can write me back private e-mail

Thanks

MeghannAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Where is Dr. Sullivan? I need a doctor to prescribe LDN for me. I live in Toronto, Ontario, Canada. Thanks.Bren <b63powell@...> wrote: >> any advice? I'm doing a phone consult with Dr. Sullivan on Monday to > get a script.>==========Dr. Sullivan is top notch. Just make sure you know of the time zone he's in and

if you're in a different time zone call him at the time he set on his time zone schedule.He's one of our best phone consult LDN prescribing docs but he only takes people with MS.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

[Guest guest]

Thank you so much!AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

>

> Where is Dr. Sullivan? I need a doctor to prescribe LDN for me. I

live in Toronto, Ontario, Canada. Thanks.

>

=========

He's in the USA. I do not keep a list of LDN docs for Canada but some

others that lurk here do. Hopefully one will contact you or someone

from Canada can be of help.

/Bren

[Guest guest]

Dr. Sullivan is in Mechanicsburg, PA >> any advice? I'm doing a phone consult with Dr. Sullivan on Monday to > get a script.>==========Dr. Sullivan is top notch. Just make sure you know of the time zone he's in and if you're in a different time zone call him at the time he set on his time zone schedule.He's one of our best phone consult LDN prescribing docs but he only takes people with MS.Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.Join Excite! - http://www.excite.comThe most personalized portal on the Web!

[Guest guest]

When I called Dr. Sullivan's office, I was told that he phone consults with patients everywhere including South Africa. hope this helps.His # is 1-717-697-5050. >> any advice? I'm doing a phone consult with Dr. Sullivan on Monday to > get a script.>==========Dr. Sullivan is top notch. Just make sure you know of the time zone he's in and if you're in a different time zone call him at the time he set on his time zone schedule.He's one of our best phone consult LDN prescribing docs but he only takes people with MS.Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Join Excite! - http://www.excite.comThe most personalized portal on the Web! Join Excite! - http://www.excite.comThe most personalized portal on the Web!

[Guest guest]

Hi

Do you know what his fee is for a phone consultation?

Thanks

Marie

Re: [low dose naltrexone] Re: just starting out

When I called Dr. Sullivan's office, I was told that he phone consults with patients everywhere including South Africa. hope this helps.His # is 1-717-697-5050.

>> any advice? I'm doing a phone consult with Dr. Sullivan on Monday to > get a script.>==========Dr. Sullivan is top notch. Just make sure you know of the time zone he's in and if you're in a different time zone call him at the time he set on his time zone schedule.He's one of our best phone consult LDN prescribing docs but he only takes people with MS.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

Join Excite! - http://www.excite.comThe most personalized portal on the Web!

Join Excite! - http://www.excite.comThe most personalized portal on the Web!

[Guest guest]

I just have a question about Dr. Sullivan...how much is a phone consult normally and how do you pay for it? And just to be certain there is people that have used him, correct?AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

It's $7 a min. I asked how long the call would be and they said anywhere from 4 min to an hour?? I really need help as my symptoms are out of control, so I'm taking the plunge! >> any advice? I'm doing a phone consult with Dr. Sullivan on Monday to > get a script.>==========Dr. Sullivan is top notch. Just make sure you know of the time zone he's in and if you're in a different time zone call him at the time he set on his time zone schedule.He's one of our best phone consult LDN prescribing docs but he only takes people with MS.Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Join Excite! - http://www.excite.comThe most personalized portal on the Web! Join Excite! - http://www.excite.comThe most personalized portal on the Web! Join Excite! - http://www.excite.comThe most personalized portal on the Web!

[Guest guest]

yes you did....sorryAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

>

> I just have a question about Dr. Sullivan...how much is a phone

consult

> normally and how do you pay for it? And just to be certain there is

people that

> have used him, correct?

>

==============

Did you not get the private email I sent yesterday with Sullivan and 2

other choices. Sullivan's charges were listed.

[Guest guest]

Hi all, at last thanks to Petro in Pretoria I was given the contact for Dr Emile Aucamp in Bela Bela South Africa, who sells LDN mostly for MS, but supplied me with a few months supply. He does compound it his self and sells 30 tabs for 95 Rand the 4.5 mgm strength.

So after many months of trying to get hold of this for my Mantle Cell Lymphoma in the Leukaemic form, TONIGHTS THE NIGHT!!

Benoni SA.

[Guest guest]

GOOD FOR YOU - jennifer

i wish you all the best there can be on LDN!!

MARSHIRISAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Enzymes sound like a really good option to pursue for your daughter,

and I don't personally know of any knew guidelines. My " NT " son is

very ADHD-like and has been helped somewhat by enzymes but he has

needed more biomed stuff than just that. Since your daughter has not

responded well to some supplements, it might really help to have some

testing done (if you haven't already) to see if there may be

underlying biochemical issues behind this. Mineral deficiencies such

as zinc deficiency can lead to avoidance of proteins and difficulty

digesting them. Also, since your daughter had trouble with fish oil,

you might want to look into the mito cocktail. These are just a few

thoughts. As for enzyme quality, the enzymedica ones have more

options and seem to generally be stronger, but we use Houston with

great results.

-Sierra

>

> My ADHD/ODD daughter has finally agreed to take enzymes. We've tried a

> number of therapies with poor results, including fish oil....I'm sure

> we'll have success with enzymes

>

> I've read 's latest book but I'm wondering if much has changed

> since her book is now afew years old. There's lots of info on the

> website, however I'm wondering if there are any new guidelines I should

> know about....She is 11 and has a severe gluten allergy and mild milk

> allergy. She also measures poorly on electro dermal screening with

> beef, chicken and some other proteins. I suspect she is lacking

> certain proteases..... that is probably contributing if not causing

> this ADHD.....cath Does enzymedica make the best enzymes? Better than

> houston?

>

[Guest guest]

Hi

Many parents have had a lot of success using Enzymedica's enzymes. We

really stand by our product and they are all 100% guaranteed. If you

would like any information or samples please let me know. There are

several products we recommend for children affected by autism. First

we recommend researching other parents similar results through the

website www.enzymestuff.com and the book Enzymes for Autism by

DeFelice. Product recommendations begin with the " low and slow "

dosing method. Lacto digestively with meals and Virastop

therapeutically between meals. Slowly building up tolerance to

enzymes, increasing potency, ultimately to Digest Gold with meals and

large mounts of Virastop if necessary between meals. If there is

gluten intolerance – ½ GlutenEase and ½ Digest Gold. Please feel free

to ask me any questions. I hope I will be able to help in any way

possible.

Alessandra

Enzymedica's Education Department

enzymedica.com

>

> My ADHD/ODD daughter has finally agreed to take enzymes. We've

tried a

> number of therapies with poor results, including fish oil....I'm

sure

> we'll have success with enzymes

>

> I've read 's latest book but I'm wondering if much has changed

> since her book is now afew years old. There's lots of info on the

> website, however I'm wondering if there are any new guidelines I

should

> know about....She is 11 and has a severe gluten allergy and mild

milk

> allergy. She also measures poorly on electro dermal screening with

> beef, chicken and some other proteins. I suspect she is lacking

> certain proteases..... that is probably contributing if not causing

> this ADHD.....cath Does enzymedica make the best enzymes? Better

than

> houston?

>

[Guest guest]

Hi ,

The helmet should fit tight enough to touch his head where it is prominent.

Sometimes they are a bit loose at first - I don't think that is ideal, but it is

common. Since he slept well in it one day I'm hoping that it was something else

making him cry. When you do put the band on try to make it fun by supplying

other distractions while he is getting used to it. Of course at 3 mo I can't

remember what interest them - they are pretty small, maybe just lots of extra

cuddles. If you're not sure about the fit go and see the ortho again and get him

to check it and explain it to you. If it isn't right he can get a new one made.

Let us know how things are going.

-christine

sydney, 4.5 yrs, starband grad

>

> Hi all,

>

> I have a 3 month old that just started his helmet therapy using a Hanger

helmet. He tolerated the first day/first hour ok - he actually slept in it, but

yesterday cried the entire 2 hours. It was awful and I couldn't wait to take it

off. My son is pretty mellow and rarely cries, so hearing him be upset that

long was super tough. The helmet also seems too big for him to get any comfort.

It also doesn't seem to put any pressure on his forehead.

>

> I'm am sure many of you also dealt with the initial getting used to it blues,

and I feel silly for being this 'weak' so early, but thought I'd just put his

out there anyway.

>

> Thanks for listening,

>

>