Re: How late is too late?

[Guest guest]

At 10:49 AM 9/22/2001 +0800, you wrote:

>I am a believer in the 4 hour protocol, but how exact do you have to

>be? We have been as late as an hour for a dose (we then try to make

>it up by going 3.5 hours between the next 2 doses). We are trying to

>chelate 2 kids, and as I'm sure everyone here knows, life is pretty

>chaotic around here.

>

>, mom to Molly (2.5, PDD) and Joe (4, NT, but terrible eczema)

Hi ,

I think Andy has said 1/2 hour late is okay. I can't remember if he's

said something about an hour? He has for sure said that it is

" okay " but not ideal to go 4 hours at night for ALA-- which is

an hour " late " . I think an hour late is pushing it a bit.

I've been an hour late and " gone on " myself, but only one or 2

times (in 18 rounds). I've also accidentally forgotten and

found myself 2 hours past time and just stopped the

round (which is VERY frustrating). I routinely go 3.5 hours

at night (which is 1/2 hour " late " ) so I will also " go on "

if I am 1/2 hour late in the daytime. I guess an hour late

seems like about the limit I would want to go, but it also

all seems rather uncertain to me.

Andy has said that taking doses " too soon " is OKAY, and this

has helped a lot for me. If it is " not really time yet " for

the next dose, but I'm about to start some activity that is

likely to totally distract me (say, a meeting, or a lecture,

or entering a social event) what I do is to take a dose THEN

(before I forget). That gives me 3 hours till I have to

remember again, which helps a lot. (Of course, this is in

ADDITION to using a timer.) I realize this may seem a bit

unrelated to your question, but it has helped me a lot in

dealing with the more chaotic times while usually still managing

to take a pill every 3 hours 3 days a week!

Actually, I must say there are also some activities that

I just won't try to chelate through--- such as conferences,

vacations, and major events where it just seems too hard

to me. I'm working on this, however! I have 2 weekend

events of this sort upcoming, and do not want to skip the

2 weekends of chelation, so I'm schemeing about starting

1 day earlier, etc, to try to get it to work out.

Moria

p.s. I don't think " making it up " by going shorter afterwared

is any help.

[Guest guest]

Hi Andy would be quite strict about this I have seen him say within 30 mins

otherwise stop till next time - but also being a mum who is chelating 2

kids - over time I have become quite flexible (had to or I would have gone

nuts) and have seen no problem with sometimes a longer gap - up to six

hours.

Regards

Terri

[ ] how late is too late?

>I am a believer in the 4 hour protocol, but how exact do you have to

>be? We have been as late as an hour for a dose (we then try to make

>it up by going 3.5 hours between the next 2 doses). We are trying to

>chelate 2 kids, and as I'm sure everyone here knows, life is pretty

>chaotic around here.

>

>, mom to Molly (2.5, PDD) and Joe (4, NT, but terrible eczema)

>

>

>=======================================================

>

[Guest guest]

--- In @y..., " s " <rat.richards@x>

wrote:

> Hi Andy would be quite strict about this I have seen him say within

30 mins

> otherwise stop till next time - but also being a mum who is

chelating 2

> kids - over time I have become quite flexible (had to or I would

have gone

> nuts) and have seen no problem with sometimes a longer gap - up to

six

> hours.

The real problem is that it is hard to tell exactly how far you can

push it until you pushed it too far. Which is why I suggest no more

than 4.5 hours between doses. Do note that trying for every 3 hours

during the days gives you more leeway just in case.

Andy

[Guest guest]

Hi ,

Welcome to the group. It is definitely NOT too late for your son!!

Sadly your story is all too common here.

The second specialist I took my daughter to said the same thing. He

was right b/c she was 11+ months old, he only used passive helmets

and it was too late for her to use that type of helmet. There are

passive helmets and they work great for infants b/c they rely totally

on growth. Active bands such as the DOCband and the STARband are

great for infants AND older babies! An active band redirects the

growth of the head through gentle pressure not felt by the baby.

Are you near a Cranial Tech clinic? They make the DOCband, you can

learn more about them at www.cranialtech.com

They offer free evaluations too.

You can also look into the STARband you can learn more about it at

www.orthomerica.com

Time isn't on your side so you need to get moving on this. Please

keep us posted!

> I've been talking to my doctors since my son was four months old

> about his head taking on a funny shape. I was told, it will get

> better, " Let's wait and see what happens. " He's eleven months old

> now and after finally getting the referral, the specialist said

it's

> too late for him now! I read an article saying this is treatable

> between 3 months to 18 months. We're going to try the helmet

anyway,

> but I wonder if my doctor has really screwed this up for good by

> waiting too long to do something. It's not like we are taking my

son

> to just any Dr. We had hoped by taking him to the University of

> Michigan's Pediatric group we would be getting the best care. I

need

> a shred of hope here...does anyone have their older infant being

> treated successfully here?

> Thanks bunches, and by the way...the pictures of the sweethearts in

> their helmets here helps me to see the helmet doesn't take away

from

> how absolutely adorable they are. I'm already planning what we can

> decorate our son's with to make it special for him.

> --

[Guest guest]

,

Good news! It's not too late!!! I see you've heard from some of our moms who

started " late " and their babies still received great correction. If you saw a

doctor that typically treats babies with a passive helmet that may be why he

said it was too late. My daughter was 9 months old when she began treatment

with a passive helmet. Nine months was really on the edge of too old to get

correction from a passive device. She did get good correction fortunately (we

had a really good orthotist). You may need to do some checking around in

your area to see if there are any local or nearby STARband makers. You can

check out www.orthomerica.com for information on orthotists near you who

use this product. You could also look into Angel Flight (this organization

offers

free flights for people undergoing treatment a distance from home) to help you

fly to the nearest DOCband clinic. A word of caution on the STARband, be

sure to interview any ortho who claims to use this product. Some STARband

orthos do not have a great deal of experience or expertise with this product,

and in the wrong hands it can do more harm then good. In the right hands it is

an excellent product. DOCband clinics are fewer and further between,

however, all their people are specifically trained to make the DOCband and

it's rare to have a bad experience with them.

I'm sorry about your ped - I totally understand the frustration and sense of

betrayal you must feel. I've been there and done that - it's not a good place to

be. :-(

Hang in there and keep us posted!!

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " alicia_shurts " <alicia_shurts@y...>

wrote:

> I've been talking to my doctors since my son was four months old

> about his head taking on a funny shape. I was told, it will get

> better, " Let's wait and see what happens. " He's eleven months old

> now and after finally getting the referral, the specialist said it's

> too late for him now! I read an article saying this is treatable

> between 3 months to 18 months. We're going to try the helmet anyway,

> but I wonder if my doctor has really screwed this up for good by

> waiting too long to do something. It's not like we are taking my son

> to just any Dr. We had hoped by taking him to the University of

> Michigan's Pediatric group we would be getting the best care. I need

> a shred of hope here...does anyone have their older infant being

> treated successfully here?

> Thanks bunches, and by the way...the pictures of the sweethearts in

> their helmets here helps me to see the helmet doesn't take away from

> how absolutely adorable they are. I'm already planning what we can

> decorate our son's with to make it special for him.

> --

[Guest guest]

, hi and welcome!! Although my daughter ended treatment at 11

months old, we have quiet a few babies starting the band at that age

and even later with wonderful results. Unfortunately, it is very

common for doctors to dismiss a parents concern when it comes to

plagio. I like to compare it, " the fear of the unknown. " I don't

have any experience with the treatment center you are referring to,

but I'm sure there is someone in this group that can help you out.

Be sure and keep us updated on things.

dustie

> I've been talking to my doctors since my son was four months old

> about his head taking on a funny shape. I was told, it will get

> better, " Let's wait and see what happens. " He's eleven months old

> now and after finally getting the referral, the specialist said

it's

> too late for him now! I read an article saying this is treatable

> between 3 months to 18 months. We're going to try the helmet

anyway,

> but I wonder if my doctor has really screwed this up for good by

> waiting too long to do something. It's not like we are taking my

son

> to just any Dr. We had hoped by taking him to the University of

> Michigan's Pediatric group we would be getting the best care. I

need

> a shred of hope here...does anyone have their older infant being

> treated successfully here?

> Thanks bunches, and by the way...the pictures of the sweethearts in

> their helmets here helps me to see the helmet doesn't take away

from

> how absolutely adorable they are. I'm already planning what we can

> decorate our son's with to make it special for him.

> --

[Guest guest]

Four is a great age to start. We started at 4.1 years, have improvement to the

point she is indistinguishable from other children, her age, now 4.11 years. She

is in a regular preK, without any assistance, and the preschool teacher and

outside psych testing show she is completely normal, cognitively speaking.

Good luck to you,

[ ] how late is too late?

What is the latest age someone knows of a child recovering from

autism? How late is too late? My son will start his chelation when

he is four (after 6 weeks of eliminating the foods he is sensitive to

and being on supplements).

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

[Guest guest]

>

> What is the latest age someone knows of a child recovering from

> autism? How late is too late? My son will start his chelation when

> he is four (after 6 weeks of eliminating the foods he is sensitive to

> and being on supplements).

My son started chelating at age 5-1/2. He is recovered from autism,

altho I am still working on immune system issues [see previous

message]. My son was severely low functioning, Kanner's autism. If

you are starting chelation at age 4, there is a very good chance of

recovery.

Dana

[Guest guest]

Wow this is so exciting to me, my son is just over 4 years and is starting

chelation. He is already doing well even without it, so we have a lot of hope!

What protocol did you use with your daughter? Dosing etc, Did you use any other

types of therapies that you thought were instrumental in her recovering?

Thanks,

Krissy

[ ] how late is too late?

What is the latest age someone knows of a child recovering from

autism? How late is too late? My son will start his chelation when

he is four (after 6 weeks of eliminating the foods he is sensitive to

and being on supplements).

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

[Guest guest]

We started chelation with our ds just after his 6th birthday using

Andy's protocal. Here is what I wrote just after his 3rd round:

" At IEP meeting on the 12th, speech therapist commented on JD being

more conversational and sharing information, especially for the last

month. DH also says he's more conversational and offers more info

without prompting. "

Elaine

>

>

> What is the latest age someone knows of a child recovering from

> autism? How late is too late? My son will start his chelation

when

> he is four (after 6 weeks of eliminating the foods he is

sensitive to

> and being on supplements).

>

[Guest guest]

Barb Romkema (sp?) on this list is chelating her 24 or 25 y.o. son and he's

making significant progress...

S S

We started chelation with our ds just after his 6th birthday using

Andy's protocal.  Here is what I wrote just after his 3rd round:

" At IEP meeting on the 12th, speech therapist commented on JD being

more conversational and sharing information, especially for the last

month. DH also says he's more conversational and offers more info

without prompting. "

Elaine

>

>

>     What is the latest age someone knows of a child recovering from

>     autism?  How late is too late?  My son will start his chelation

when

>     he is four (after 6 weeks of eliminating the foods he is

sensitive to

>     and being on supplements). 

>

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