new member and question

[Guest guest]

, That is the only paper BUT every one here cuts the dose

in 1/2 for DMSA( this may still be a little high) and give every 4

hour even at night ( my son is 6 and is 50 # I give 100mg every 4

hours) If you are useing ALA cut that also and give every 3 hours.

You should read through the files here Moria has orgainazed them and

you can read why we do it that way. Other supplements are fine to

give in that paper I would give the zinc dose twice a day. My 2

cents Ann

[Guest guest]

Hello ,

I'm Moria. I live in California. I don't have any kids,

but I know some about from chelation, from having done it

myself, and from reading this list and other things.

> My name is , I live in France. My 6 years old son is

> autistic. He attends regular school with a special help, which is a

> exception here, where most of our kids are in hospital with no

> education at all ! And arrive adult in psychiatric hospitals !

:[ ^%$#@

> I have began the diet 1 year ago and supplementation ...

> We have only one DAN! Doctor in France with 1 year only of

> experience ! Most of the " regular " doctor think we are creasy ! but

> the results are good and we are more and more with this approach !

well, then " good for you " that you can go on with it in spite

of the ones who think you are crazy

>

> Concerning the mercury detox, I need urgently to know if the " may

> 2001 DAN! Mercury Detoxification Consensus Group Paper " is the last

> DAN! paper ? In order to check my son protocole.

It is. However, some DAN doctors do other things not listed

in the paper. I think some listmates have also brought up

that Andy's protocol is used instead of DAN by many on this

list. You can read more about it here:

/files/Andy_dose_sched

/files/Andy_protocol

If you have questions about how Andy looks at things or what is

recommended, you can find answers to a lot of questions here:

/files/ANDY_INDEX

Some of the basic differences between ANdy and Dan are:

1. MUCH lower amounts of chelation agents

2. give chelation agents more often to maintain a steady

chelation effect over 3 days or more. This is every 3 hours

for ALA or every 4 hours for DMSA.

3. do not use " sulfury " supplements like glutithione unless

your child needs it. Some do, for others it is harmful.

best wishes,

Moria

[Guest guest]

Yael,

First of all, welcome. I'm sure you will find everyone here to be

helpful and encouraging and loving, as well as just plain fun!

Congratulations on the adoption! It truly is wonderful to have a

little one to love and take care of.

If you are ever unhappy with what a doctor says, you ALWAYS have the

right to a second, or third, or fourth opinion. From the sounds of

what teh first doctor told you, it sounds like the orthosis will help

improve the appearance of her head shape, but probably won't assist

in the delay and it's underlying cause. HOWEVER, you are doing the

right thing by seeing another neurologist. Be sure to ask any and

all questions you might have, no matter how ridiculous you might

think them... they're concerns of yours and you deserve to have them

addressed. I would ask if changing the shape of her head would

improve her life at all, and also if NOT changing the shape of her

head would have negative effects on her health and well being now OR

later on in her life. Remember, you adopted her to give her a better

life... and that includes fixing her head shape if that's going to

help her... even if it isn't 'medically necessary' that could really

effect her later on in life. (sounds vain and petty but it is true)

just make sure you do your homework and know that there are several

options out there as far as a cranial remolding orthosis goes... many

moms on here will agree wholeheartedly with the fact that you need to

do a LOT of research before deciding on one... as for her age, I saw

a little boy at CT in charlotte that was 14 months old and one that

was even older than him in bands, if you check their website there's

a lot of helpful information... here's the site...

www.cranialtech.com check that out and best wishes to you... just

be confident and keep your child's best interests in mind, don't let

anyone push you around and you'll do fine.

Tiernan's mommy Starband dropout, DOCbanded 4/29/2003

ton, SC

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

wrote:

> Hi

> I tried to post this yesterday, so I hope it is not repetitive.

>

> We just adopted a 15 month old baby whose diagnosis is still up in

> the air. She is definitely delayed. A letter from a neurologist in

> her file states: " Although S has a severe deformational

> plagiocephaly I doubt that a cranial orthosis will significantly

> improve her calvarial contour given the degree of microcephaly from

> her underlying brain abnormaility (both secondary to her

> hemorrhage/infarction and probable genetic disorder. "

>

> We have an appointment with a neurologist (different one) on

Friday.

> I am wondering if anyone can give me any guidance on what to ask to

> see if he might re-evaluate if the orthosis might actually help.

> Also, is she too old for it to make a difference? She only weighs

15

> pounds. She is very alert and responsive, combat crawls, and is

> quick to learn new things. I am not convinced that the assessment

> from the old neurologist is correct.

>

> Thank you for any help.

> Yael

[Guest guest]

Hello Yael & welcome to our group!

15 mos old is not too old to benefit from banding your daughter. She also is so small yet, she would hopefully hit some growth spurts over the next several mos.. As long as her sutures have not yet fused, there is still time to benefit from an active band, such as a DOCband made by Cranial Technologies www.cranialtech.com or a STARband by Orthomerica www.orthomerica.com . Did S receive a CT scan or Xrays to make sure her sutures are still open & not yet prematurely fused (craniosynostosis)?

For a list of questions to ask you neuro Friday

[Guest guest]

Hi Yael

I think you are doing the right thing by getting a second opinion.

If you go to www.plagiocephaly.org, you can find some questions

there that they suggest to ask the doctor. I would also suggest

that any questions that you think of between now and Friday to write

them down. It is amazing what you forget to ask during the

appointment and then remember as soon as you walk out the door.

I am sure that some of the other parents on this board will offer

excellent advice. I only saw our neuro on Monday, so I can't offer

any insight into the band itself (yet....).

Good luck and let us know how it goes

, mom to Ethan

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

wrote:

> Hi

> I tried to post this yesterday, so I hope it is not repetitive.

>

> We just adopted a 15 month old baby whose diagnosis is still up in

> the air. She is definitely delayed. A letter from a neurologist in

> her file states: " Although S has a severe deformational

> plagiocephaly I doubt that a cranial orthosis will significantly

> improve her calvarial contour given the degree of microcephaly

from

> her underlying brain abnormaility (both secondary to her

> hemorrhage/infarction and probable genetic disorder. "

>

> We have an appointment with a neurologist (different one) on

Friday.

> I am wondering if anyone can give me any guidance on what to ask

to

> see if he might re-evaluate if the orthosis might actually help.

> Also, is she too old for it to make a difference? She only weighs

15

> pounds. She is very alert and responsive, combat crawls, and is

> quick to learn new things. I am not convinced that the assessment

> from the old neurologist is correct.

>

> Thank you for any help.

> Yael

[Guest guest]

Yael, hello and welcome to the group. I hope that your new appointment with

then new nero goes better. Keep us posted on that. As far as the crawling,

my son Jeffry did the same thing until he was one week shy of 15 months,

then he just desided to stand up and walk, and then boom, he was been

walking for a month now. I didn't think that he was ever going to do it,

but they just do everything at their own pase. Also glad to hear that you

are getting a second opinion, that is just the best thing to do. And you

will feel so much better about it too. Keep us posted and let us know how

Friday goes. Best wishes, Heidi, mom to Jeffry, local helmet grad, MN

Hugs & Drool,

Jeffry, Heidi & Brett

Zimmerman

>From: " yaelchai " <yaelchai@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: New Member and Question

>Date: Wed, 30 Apr 2003 14:32:56 -0000

>

>Hi

>I tried to post this yesterday, so I hope it is not repetitive.

>

>We just adopted a 15 month old baby whose diagnosis is still up in

>the air. She is definitely delayed. A letter from a neurologist in

>her file states: " Although S has a severe deformational

>plagiocephaly I doubt that a cranial orthosis will significantly

>improve her calvarial contour given the degree of microcephaly from

>her underlying brain abnormaility (both secondary to her

>hemorrhage/infarction and probable genetic disorder. "

>

>We have an appointment with a neurologist (different one) on Friday.

>I am wondering if anyone can give me any guidance on what to ask to

>see if he might re-evaluate if the orthosis might actually help.

>Also, is she too old for it to make a difference? She only weighs 15

>pounds. She is very alert and responsive, combat crawls, and is

>quick to learn new things. I am not convinced that the assessment

>from the old neurologist is correct.

>

>Thank you for any help.

>Yael

>

>

>

>For more plagio info

[Guest guest]

Hi,

COngratualations on your new daughter!

I think since she is still so small and is probably due for a nice

growth spurt that if you did band you would see correction! You

really don't have anything to lose. Are you near a Cranial Tech

office? They make the DOCband. Their web address is

http://www.cranialtech.com

Please keep us posted.

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

wrote:

> Hi

> I tried to post this yesterday, so I hope it is not repetitive.

>

> We just adopted a 15 month old baby whose diagnosis is still up in

> the air. She is definitely delayed. A letter from a neurologist in

> her file states: " Although S has a severe deformational

> plagiocephaly I doubt that a cranial orthosis will significantly

> improve her calvarial contour given the degree of microcephaly from

> her underlying brain abnormaility (both secondary to her

> hemorrhage/infarction and probable genetic disorder. "

>

> We have an appointment with a neurologist (different one) on

Friday.

> I am wondering if anyone can give me any guidance on what to ask to

> see if he might re-evaluate if the orthosis might actually help.

> Also, is she too old for it to make a difference? She only weighs

15

> pounds. She is very alert and responsive, combat crawls, and is

> quick to learn new things. I am not convinced that the assessment

> from the old neurologist is correct.

>

> Thank you for any help.

> Yael

[Guest guest]

We saw the neurologist on Friday. He was open to the banding, but wants us to get an MRI to see if the craniostynosis is stripes6060 <taime@...> wrote:

Hi,COngratualations on your new daughter!I think since she is still so small and is probably due for a nice growth spurt that if you did band you would see correction! You really don't have anything to lose. Are you near a Cranial Tech office? They make the DOCband. Their web address is http://www.cranialtech.comPlease keep us posted.> Hi> I tried to post this yesterday, so I hope it is not repetitive. > > We just adopted a 15 month old baby whose diagnosis is still up in > the air. She is definitely delayed. A letter from a neurologist in > her file states: "Although S has a severe deformational > plagiocephaly I doubt that a cranial orthosis will significantly > improve her calvarial contour given the degree of microcephaly from > her underlying brain abnormaility (both secondary to her > hemorrhage/infarction and probable genetic disorder." > > We have an appointment with a neurologist (different one) on Friday. > I am wondering if anyone can give me any guidance on what to ask to > see if he might re-evaluate if the orthosis might actually help. > Also, is she too old for it to make a difference? She only weighs 15 > pounds. She is very alert and responsive, combat crawls, and is > quick to learn new things. I am not convinced that the assessment > from the old neurologist is correct.> > Thank you for any help.> YaelFor more plagio info

[Guest guest]

Hi all

I'm a new member too, pleased to meet you all! My son Bipin is 9 months

old and has BPES, as does my husband and his brother, sister and Dad.

We just saw Mr Collin at Moorfields and he recommended that he does a

sort of interim operation to lift Bipin's lids enough so that they

don't cover his pupils so that his eyesight can develop properly. It's

not the permanent operation (slings?) that many of you are talking

about but would only last a few years so that his eyesight can develop.

He described it as putting a stitch inside his lids. Have any of you

been through this? any before and after photos?

Tessa

[Guest guest]

Hi Tessa Welcome to the group.My Name is and my Daughter is just over 2 and has had the temperary slings Mr Collin has sugested.I have to agree with him was 9mths old when she had hers done and wasnt doing much because of lack of vision,within days of the op she was like a different child looking around and starting to move.Her before and after photos are under .I have been told she wont have anymore ops until she is between 5 and 7 and these will be the main ones. Hope you can make the meeting Sunday more the merrier. tessa_mackenzie <tessamackenzie@...> wrote: Hi allI'm a new member too, pleased to meet you all! My son Bipin is 9 months old and has BPES, as does my husband and his brother, sister and Dad.

We just saw Mr Collin at Moorfields and he recommended that he does a sort of interim operation to lift Bipin's lids enough so that they don't cover his pupils so that his eyesight can develop properly. It's not the permanent operation (slings?) that many of you are talking about but would only last a few years so that his eyesight can develop. He described it as putting a stitch inside his lids. Have any of you been through this? any before and after photos?Tessa

Play Santa's Celebrity Xmas Party, an exclusive game from

[Guest guest]

Welcome Tessa & Bipin! (I cannot remember who I have

welcomed so if I missed someone welcome to you too!

Tessa, I don't know what the temporary " stitch " is.

Sorry. My son, Micah, had the YV canthoplasty and

frontalis slings with silicone rods all in one surgery

when he was 2 yrs 10 months old. But I'm sure someone

here will have info for you.

April Eisele, Colorado, USA

Wife to Jon

Mommy to Mira, Micah & Misha

>

> tessa_mackenzie <tessamackenzie@...> wrote:

> Hi all

> I'm a new member too, pleased to meet you all! My

> son Bipin is 9 months

> old and has BPES, as does my husband and his

> brother, sister and Dad.

> We just saw Mr Collin at Moorfields and he

> recommended that he does a

> sort of interim operation to lift Bipin's lids

> enough so that they

> don't cover his pupils so that his eyesight can

> develop properly. It's

> not the permanent operation (slings?) that many of

> you are talking

> about but would only last a few years so that his

> eyesight can develop.

> He described it as putting a stitch inside his lids.

> Have any of you

> been through this? any before and after photos?

> Tessa

>

>

>

>

>

>

>

>

[Guest guest]

I like those Baby's First Words books too. My son's SLP uses PECS,

which is cheaper than boardmaker, but his OT prefers we take

pictures with a digital camara.

> >

> > Hi,

> >

> > I just joined this group to help me navigate the waters of

> apraxia.

> > I have a 21/2 yr old with Prader-Willi Syndrome---any others out

> > there? He is dyspraxic, among other issues of course, and he

> takes

> > EFAs. I am a former PS teacher, who now stays at home, and I

> > homeschool my older son. I have been teaching my younger son

sign

> > language since he was about a year old, and he can sign and

> > communicate mostly what he wants, but because he is so smart, it

> is

> > getting more difficult for him to tell us things. He has been

> > reaching some walls with sensory issues, and I think that the

lack

> > of ability to speak is getting in the way as well. In other

> words,

> > tantrums have been on the rise. He is very bright, and he will

> > surprise me by asking me detailed questions through his signs

and

> > gestures. I will think to myself, " I didn't even know that he

> > noticed that! "

> >

> > So, I have been trying to get him an AAC device, and I have been

> > told that he needs to start with a picture book. I want the

> > capability to create more communication pictures for him as we

> need

> > them, as well as make picture books so we can start more on his

> > letters, as he has shown an interest in words. Since I am going

> to

> > homeschool him, I am looking for a picture program to help me do

> > this at home, so that I don't have to keep asking the school

> > district personnel to print me out pictures, etc. The school

> > district that will offer him speech services, will use

> Boardmaker.

> > They feel the need to be consistent, but he has pointed and

> > communicated using photographs with us, so I am not concerned

> about

> > that. I also found this similar program, but cheaper, called

> Picture

> > This, that uses photographs instead of cartoons. What do you

all

> > use at home? Any other suggestions? This is all new to me, and

I

> > am trying to get picture speech off the ground.

> >

> > Thanks,

> >

> > Kim

>

> Jeanne here. One book is " first words " for babies and toddlers. by

> salt, hawksley

> >http://www.pwsausa.org/nj/index.htm

>