Question from a New Member

Posted January 7, 2006 · January 7, 2006

Hello Tetty,

I can’t help too much with your

individual questions but I am at a very similar stage to you with my son Tom

who has only just turned 3 and I am also new to this group. If you think it would help to share our

information so far, please phone me on 01752 265085. Although we are at a similar stage, I think

we have done different things so we can discuss that.

Thanks, SARA

Question from a new member

Hello to all..

I am happy to join this group and hope we can

share info.

I have 2 year old daughter with ASD.

Since the diagnosis 6 months ago, we started GF-CF

diet and recently

enrolled ABA. We also give her Super Nu Thera with

12.5 P5P and cod

liver oil for 3 months.

She showed an improvement in learning the skills

(imitation,

attending, matching), however I still have the

following main

issues :

- poor eye contact and very little interaction to

people

- babbling pretty much but no words

- doesn't play with toys

Recently we send her urine and hair samples.

From urine organic acid test, there is no

indication of yeast or

bacteria overgrowth.

Hair samples showed high levels of Mercury (0.92

microgram/gram),

Lead (2.3), Al (25). She is low in Zinc and

Selenium.

I read that chelation is a way to remove the heavy

metals.

Questions :

- Can someone help me to refer a doctor in US/UK

who is experience

with these problems especially chelation ?

- Anyone can share experience in chelation ?

- Anyone has experience with making up the Zinc

and Selenium ?

Thanks,

Tetty

Posted January 8, 2006 · January 8, 2006

Hi there

Welcome to the group!

The practitioners listed at

http://www.autismwebsite.com/ari/dan/dan.htm

are all DAN! practitioners. The parts of the DAN! protocol that

they use are listed if you click on them, so you can see who can and

cant supervise chelation. Be sure to ask when they last recieved

DAN! training so that you are sure to be getting a practitioner who

is up to date on the latest treatments.

My son also had no gut issues showing up on the tests - but that

does not mean they are not there.......they could be in another part

of the gut that the test doesnt reach. The tests did show that he

has a major problem with absorbing nutrients.

I think my son's problems are caused by heavy metals and we will be

moving onto chelation as soon as we are sure that his body is in the

best possible condition for it.

He is proving to be quite sensitive to supplements eg when we

introduced melatonin to help him sleep, it helped him sleep, but

made him psychotic, so we stopped it.

We are going low and slow with the supps and he is tolerating

everything so far......we get nearer and nearer chelation every day.

I would suggest you have some comprehensive testing done if you can

afford it, to establish a baseline from which to treat.

If you are a resident of the UK, you may be able to get a grant to

cover the cost of testing and treatment from the Caudwell Trust,

especially if your income (combined if you are in a couple) is less

than £30K. If you are not in the UK I would recommend you try to

find out if there are any charities in your country that provide

financial help.

Details of the Caudwell Trust can be found at

http://www.caudwellcharity.com/

Zoe x

>

> Hello to all..

>

> I am happy to join this group and hope we can share info.

>

> I have 2 year old daughter with ASD.

> Since the diagnosis 6 months ago, we started GF-CF diet and

recently

> enrolled ABA. We also give her Super Nu Thera with 12.5 P5P and

cod

> liver oil for 3 months.

>

> She showed an improvement in learning the skills (imitation,

> attending, matching), however I still have the following main

> issues :

> - poor eye contact and very little interaction to people

> - babbling pretty much but no words

> - doesn't play with toys

>

> Recently we send her urine and hair samples.

> From urine organic acid test, there is no indication of yeast or

> bacteria overgrowth.

>

> Hair samples showed high levels of Mercury (0.92 microgram/gram),

> Lead (2.3), Al (25). She is low in Zinc and Selenium.

>

> I read that chelation is a way to remove the heavy metals.

>

> Questions :

> - Can someone help me to refer a doctor in US/UK who is experience

> with these problems especially chelation ?

> - Anyone can share experience in chelation ?

> - Anyone has experience with making up the Zinc and Selenium ?

>

> Thanks,

> Tetty

>

Posted January 8, 2006 · January 8, 2006

Tetty,

our son did not do that well on Super Nu Thera, and actually improved a bit

after we stopped it. I have learned since that some kids just cannot tolerate it

very well. It could be some of the B vitamins in high concentration, or it could

be some of the additives - I believe it has sucrose and similar. It might be

worth stopping it for a week or two and observing any changes.

Natasa

> >

> > Hello to all..

> >

> > I am happy to join this group and hope we can share info.

> >

> > I have 2 year old daughter with ASD.

> > Since the diagnosis 6 months ago, we started GF-CF diet and

> recently

> > enrolled ABA. We also give her Super Nu Thera with 12.5 P5P and

> cod

> > liver oil for 3 months.

> >

> > She showed an improvement in learning the skills (imitation,

> > attending, matching), however I still have the following main

> > issues :

> > - poor eye contact and very little interaction to people

> > - babbling pretty much but no words

> > - doesn't play with toys

> >

> > Recently we send her urine and hair samples.

> > From urine organic acid test, there is no indication of yeast or

> > bacteria overgrowth.

> >

> > Hair samples showed high levels of Mercury (0.92 microgram/gram),

> > Lead (2.3), Al (25). She is low in Zinc and Selenium.

> >

> > I read that chelation is a way to remove the heavy metals.

> >

> > Questions :

> > - Can someone help me to refer a doctor in US/UK who is experience

> > with these problems especially chelation ?

> > - Anyone can share experience in chelation ?

> > - Anyone has experience with making up the Zinc and Selenium ?

> >

> > Thanks,

> > Tetty

> >

>

Posted January 9, 2006 · January 9, 2006

Hi Zoe,

Thanks for your reply.

I am curious with your experience about the gut issue.

I only did organic acid test in Great Plains Lab and it didn't show

indication of yeast of bacteria. I thought it is consistent with the

fact that my daughter doesn't have problem with ear infection or

diarrhea..

Which kind of test that tells you that he has major problem in

absorbing nutrient ? Is it comprehensive stool analysis ?

We live in Dubai, Middle East. I have seen the DAN list, but thought

you or this group can guide me for good doctors that you have

experience with..

thanks,

Tetty

> >

> > Hello to all..

> >

> > I am happy to join this group and hope we can share info.

> >

> > I have 2 year old daughter with ASD.

> > Since the diagnosis 6 months ago, we started GF-CF diet and

> recently

> > enrolled ABA. We also give her Super Nu Thera with 12.5 P5P and

> cod

> > liver oil for 3 months.

> >

> > She showed an improvement in learning the skills (imitation,

> > attending, matching), however I still have the following main

> > issues :

> > - poor eye contact and very little interaction to people

> > - babbling pretty much but no words

> > - doesn't play with toys

> >

> > Recently we send her urine and hair samples.

> > From urine organic acid test, there is no indication of yeast or

> > bacteria overgrowth.

> >

> > Hair samples showed high levels of Mercury (0.92

microgram/gram),

> > Lead (2.3), Al (25). She is low in Zinc and Selenium.

> >

> > I read that chelation is a way to remove the heavy metals.

> >

> > Questions :

> > - Can someone help me to refer a doctor in US/UK who is

experience

> > with these problems especially chelation ?

> > - Anyone can share experience in chelation ?

> > - Anyone has experience with making up the Zinc and Selenium ?

> >

> > Thanks,

> > Tetty

> >

>

Posted January 12, 2006 · January 12, 2006

Hi Tetty

It was primarily the nutrient and toxic elements part of the ION

panel that we had done that showed problems with absorption.

I think that it can also be interpreted indirectly from other tests

if the practitioner knows what to look for. Our DAN practitioner is

also a nutritionist. Her details (and details of the ION panel) can

be found at http://www.Autism and Aspergers Treatment.co.uk/index.htm

Hope that helps.

Zoe

> > >

> > > Hello to all..

> > >

> > > I am happy to join this group and hope we can share info.

> > >

> > > I have 2 year old daughter with ASD.

> > > Since the diagnosis 6 months ago, we started GF-CF diet and

> > recently

> > > enrolled ABA. We also give her Super Nu Thera with 12.5 P5P

and

> > cod

> > > liver oil for 3 months.

> > >

> > > She showed an improvement in learning the skills (imitation,

> > > attending, matching), however I still have the following main

> > > issues :

> > > - poor eye contact and very little interaction to people

> > > - babbling pretty much but no words

> > > - doesn't play with toys

> > >

> > > Recently we send her urine and hair samples.

> > > From urine organic acid test, there is no indication of yeast

or

> > > bacteria overgrowth.

> > >

> > > Hair samples showed high levels of Mercury (0.92

> microgram/gram),

> > > Lead (2.3), Al (25). She is low in Zinc and Selenium.

> > >

> > > I read that chelation is a way to remove the heavy metals.

> > >

> > > Questions :

> > > - Can someone help me to refer a doctor in US/UK who is

> experience

> > > with these problems especially chelation ?

> > > - Anyone can share experience in chelation ?

> > > - Anyone has experience with making up the Zinc and Selenium ?

> > >

> > > Thanks,

> > > Tetty

> > >

> >

>

Posted June 18, 2009 · June 18, 2009

I'd like to introduce myself, and ask for advice. My name is , I'm 66, and

I'm scheduled to get a Nucleus Freedom implant in my right ear at NYU this

Wednesday, June 24. Surgeon is Dr. Roland. I have been reading for a

while and find it incredibly helpful. With my surgery date almost here, I'd be

very grateful for any tips, coping techniques, personal experiences or even

possible problems to watch out for between the surgery and activation at the end

of July. I have already gotten a lot of helpful advice by reading the posts

regularly but I thought I would reach out, introduce myself and ask if anyone

has experiences they would like to share. By way of background, my hearing

started to slide about 20 years ago, which is normal in male members of my

family. For unknown reasons it started to get really bad about three years ago.

Last summer, in the words of my audi, it went off a cliff. I use hearing aids

and an FM system and will continue to wear a hearing aid in my left ear, where I

have a very small but useful amount of residual hearing. Thanks very much.

Posted June 18, 2009 · June 18, 2009

Hi, :

Tip: Wear a button down shirt to the hospital and loafers; it's best not to

have to pull a shirt over your head when you leave or have to bend down to

tie your shoes. You will be very, very dizzy right after surgery but that

will decrease steadily over the next two weeks. The worst part about

getting the implant is basically the unknown: Give it time and virtually

everything gets better.

At home, I wanted popsicles for the sore throat after surgery (from the

breathing tube). Figure on a week after surgery to be feeling semi-normal,

and two weeks to feel 100%.

Posted June 19, 2009 · June 19, 2009

Hi

Each person is different and each ear is different as to how the person

responds to the surgery and implant activation. The manufacturer of the

implant is irrelevant in regard to this issue. I had the implant twice

because of need for removal of my first implant in 2000 after 13 years of

service for an MRI. The opposite ear was implanted after MRI. Both times

surgery and recovery was uneventful. The activations of each ear were very

different with the first implant (1987) taking 3 months to normalize after

starting with nothing but noise, and the second 2 weeks starting with

slightly tinny clear speech.

Activation is tough because it requires patience and in many cases

persistence effort at repetitive listening to sound stimuli!

Wishing you the best with your surgery and activation. Ruth

Hi ,

I have an AB implant but just thought I'd say that I, personally, had no

problems at all after the operation. None. Not even pain other than a bit

of tenderness at the incision. I know others have experienced some

discomforts and I'm sure you'll hear from them. I did understand speech

when activated but not well. It's improved a great deal over the last 3 1/2

years, though, and I hear pretty well now.

Virg

> I'd like to introduce myself, and ask for advice. My name is , I'm

> 66, and I'm scheduled to get a Nucleus Freedom implant in my right ear at

> NYU this Wednesday, June 24. Surgeon is Dr. Roland. I have been reading

> for a while and find it incredibly helpful. With my surgery date

> almost here, I'd be very grateful for any tips, coping techniques,

> personal experiences or even possible problems to watch out for between

> the surgery and activation at the end of July. I have already gotten a

> lot of helpful advice by reading the posts regularly but I thought I would

> reach out, introduce myself and ask if anyone has experiences they would

> like to share. By way of background, my hearing started to slide about 20

> years ago, which is normal in male members of my family. For unknown

> reasons it started to get really bad about three years ago. Last summer,

> in the words of my audi, it went off a cliff. I use hearing aids and an

> FM system and will continue to wear a hearing aid in my left ear, where I

> have a very small but useful amount of residual hearing. Thanks very

> much.

>

> ------------------------------------

>

Posted June 19, 2009 · June 19, 2009

Howdy from a native of Dallas! Think this will be the hardest thing you ever

have done and that way you will be prepared and it will not be so hard.

Read all of the paperwork beforehand. Baby asprin was a no no for a week before

surgery. Anticipate and ask for the paperwork you will be given about post op.

A lot easier to read before surgery!

I cleared my calendar of all appointments for the week. While I went to my desk

job two days after surgery, everybody is different. Pay attention to your body.

I literally avoided social contact - being with family was enough.

Do NOT shake your head from side to side. Do NOT blow your nose. You will

sleep well that night - pain pills are OK.

Get your hair cut now as your barber may have a problem cutting around your

ears.

Good luck. Hope you will share your journey with us.

Neely, Dallas

>

> I'd like to introduce myself, and ask for advice. My name is , I'm 66,

and I'm scheduled to get a Nucleus Freedom implant in my right ear at NYU this