Re: Vit D & apraxia? Please help/Southern California

[Guest guest]

Wedyana there are medical doctors that do have a great deal of knowledge about

nutrition- I happen to be friends with some. Because of your child's history of

partial seizures as well as the regression you really do need not just a medical

doctor who has knowledge in nutrition, but one with knowledge in neurological

conditions as well.

Any regression is to be taken seriously. And I don't care for a doctor who

hears about a regression and just over the phone tells you to pull your child

off medication without testing your child. Also -I noticed one person wrote

about a Dan -just because someone is called a Dan doctor as you know doesn't

even mean they are a medical doctor, they could be a therapist, no less has a

specialty in neurology. And no method is always golden

http://abcnews.go.com/Health/TheLaw/doctors-sued-autism-chelation-therapy/story?\

id=10045951 Again as your child has a history of partial seizures and is now

regressing in my opinion it's very important to seek a medical doctor that has

knowledge in a few areas including neurological.

When you say you stopped all the vitamins -I say that was a good thing with the

fat soluble as they make me nervous to say the least for obvious reasons... but

why would you pull your child off the fish oils? They provide essential fatty

acids and are needed daily. I'm sure whatever doctor you end up finding will

continue your child on them -and especially since they are linked not just to

helping neurological function -but psychological as well as many other areas of

the body -again they are essential. In addition carnosine, which is not an

essential amino acid and one's body should be able to produce if provided with

all the essential amino acids in the diet -including NV- years ago prior to NV

being around when I put my son on carnosine and carn-aware he needed to go on

and off as he regressed if he was on it too long- or not on it. I wrote about

this a few times which you can find in the archives and even on some web pages -

and because nobody could explain why I had to use the on and off schedule I

stopped using it. I am thankful that NV worked for my son and that supplies all

the essential amino acids and nutrients from food so I don't have to supplement

at all and play around with that after what happened to Tanner from vitamin e.

You say you are in Southern California. There is this group here

Apraxia_Dyspraxia_CA/ but I don't know if

it's active as it's only had one message in the past week. I just put Southern

California in the subject and I hope you get suggestions.

I do hope that you get the answers soon to help your child from a doctor who can

work with you to help!!

=====

[Guest guest]

*>> Also -I noticed one person wrote about a Dan -just because someone is

called a Dan doctor as you know doesn't even mean they are a medical doctor,

they could be a therapist, no less has a specialty in neurology.*

I don't know of any DANs that are therapists and I don't know anyone who

sees a DAN who is a therapist. Most are MDs, naturopathic doctors, or

nutritionists, some are homeopaths. A therapist would not be a DAN doctor.

You would also run a check on your DAN doctor before even making an

appointment, but that goes without saying for any kind of healthcare

provider -- neurologist or DAN.

Many kids on the spectrum have PANDAS issues and many people I know who have

kids with PANDAS issues are working with their DANs to treat it. The DAN

that is needed here is one with a medical license who is able prescribe an

antibiotic.

We've had good experiences working with our DAN doctor who is a MD (we are

not currently treating for PANDAS, though). We also see a naturopath, as

well. Just because you see a DAN doesn't mean that the child is a candidate

for chelation therapy or that the DAN will do chelation (and who said

anything about chelation? I'm talking about running tests for strep and

lyme).

On Wed, Mar 2, 2011 at 8:48 PM, kiddietalk <kiddietalk@...> wrote:

>

>

> Wedyana there are medical doctors that do have a great deal of knowledge

> about nutrition- I happen to be friends with some. Because of your child's

> history of partial seizures as well as the regression you really do need not

> just a medical doctor who has knowledge in nutrition, but one with knowledge

> in neurological conditions as well.

>

> Any regression is to be taken seriously. And I don't care for a doctor who

> hears about a regression and just over the phone tells you to pull your

> child off medication without testing your child. Also -I noticed one person

> wrote about a Dan -just because someone is called a Dan doctor as you know

> doesn't even mean they are a medical doctor, they could be a therapist, no

> less has a specialty in neurology. And no method is always golden

>

http://abcnews.go.com/Health/TheLaw/doctors-sued-autism-chelation-therapy/story?\

id=10045951Again as your child has a history of partial seizures and is now

regressing

> in my opinion it's very important to seek a medical doctor that has

> knowledge in a few areas including neurological.

>

> When you say you stopped all the vitamins -I say that was a good thing with

> the fat soluble as they make me nervous to say the least for obvious

> reasons... but why would you pull your child off the fish oils? They provide

> essential fatty acids and are needed daily. I'm sure whatever doctor you end

> up finding will continue your child on them -and especially since they are

> linked not just to helping neurological function -but psychological as well

> as many other areas of the body -again they are essential. In addition

> carnosine, which is not an essential amino acid and one's body should be

> able to produce if provided with all the essential amino acids in the diet

> -including NV- years ago prior to NV being around when I put my son on

> carnosine and carn-aware he needed to go on and off as he regressed if he

> was on it too long- or not on it. I wrote about this a few times which you

> can find in the archives and even on some web pages - and because nobody

> could explain why I had to use the on and off schedule I stopped using it. I

> am thankful that NV worked for my son and that supplies all the essential

> amino acids and nutrients from food so I don't have to supplement at all and

> play around with that after what happened to Tanner from vitamin e.

>

> You say you are in Southern California. There is this group here

> Apraxia_Dyspraxia_CA/ but I don't

> know if it's active as it's only had one message in the past week. I just

> put Southern California in the subject and I hope you get suggestions.

>

> I do hope that you get the answers soon to help your child from a doctor

> who can work with you to help!!

>

> =====

>

[Guest guest]

Listen I know for a fact there are some awesome knowledgeable medical.doctors

who are also Dan doctors -but just because again someone is 'called' a Dan

doctor does not mean they are even a doctor, or qualified to work with children.

Caveat emptor

My son's own speech therapist Dr. Renai Jonas is included on the list of Dan

doctors because she attended a Dan conference. She is a doctor...but her

doctorate is in speech pathology -AND she didn't even know what I was talking

about when I showed her that she was listed as a Dan " doctor "

http://www.autismlink.com/services/index/location_id:10?show=100 & page=5

(funny that she's still listed!! I believe she called them to remove her from

this list)

According to what I read a Dan " clinician is a licensed healthcare provider "

http://www.autismwebsite.com/practitioners/us_lc.htm and yes that includes

therapists. And here's someone who is both a therapist 'and' a social worker

'and' listed as a dan doctor

Deborah Skalabrin, MSW, LICSW

" DEFEAT AUTISM NOW! (DAN!) Physician Referral List: "

(with a PO Box???)

Deborah Skalabrin, MSW

PO Box 30248

Spokane, WA 99223

ph: 509-448-1506

http://www.autismtoday.com/clinician-list.html

Year for Change LLC

Deborah Skalabrin, MSW, LICSW 701 W. 7th Ave. Suite 15

Spokane, WA 99204

Phone: 509.488.1506

Fax: 509.624.7500

Email: deborah@...

Web: www.yearforchange.com

Provides intensive interventions to maximize the potential of children birth to

age 12 with Autism, PDD/PDD-NOS, or Asperger Syndrome, including help with child

behaviors related to Defeat Autism Now!/biomedical treatments. Assessments,

counseling, direct child treatment, workshops and individualized high-intensity

home programs targeting social skills, play, relationships, attention, emotions,

and Autism behaviors. Training for parents, siblings, students, and educators in

a demonstration/coaching style. Isaac Foundation and DDD provider, some

insurance.

Here's a Dan doctor who is a nurse practitioner with a history as " an authority

on women’s hormonal and emotional balance " http://mialundin.com/about Who is

also on the list of Dan " doctors " http://www.autismtoday.com/clinician-list.html

And a certified pharmacy consultant? Really?

C. King, C.Ph.T.

1694 Myrtle Avenue

Eureka, CA 95501

tel: 707-443-4885

fax: 707-443-6527

All I was saying is that we don't know why Wedyana's son is regressing. Again

for an 8 year old with sudden regression and a history of seizures -a doctor

that specializes in neurology is all I would recommend. And someone more

knowledgeable about nutrition as well. Nobody can diagnose or try to diagnose

anyone else's child here. There is no way to know if Wedyana's son would be

diagnosed with " Pediatric Autoimmune Neuropsychiatric Disorders Associated with

Streptococcal infection " and no I don't believe that's super common based on all

the autistic children on this grouplist who have not been diagnosed with this

-and even if he did have this after a neurologist tested him for it

http://intramural.nimh.nih.gov/pdn/web.htm I'd still say he's best off with a

neurologist that also has knowledge in nutrition based on history. A regression

in any age again is to be taken seriously and especially in a child with a

history of seizures.

And out of the medical doctors I recall some had backgrounds as podiatrists,

gynocologists. Just because someone becomes a medical doctor doesn't mean they

have the skill or training to advise treatment for an 8 year old child who is

experiencing regressions -one who has a history of seizures! And again I would

not recommend a naturopath or chiropractor or dentist which at least used to be

all included in the list of Dan " doctors " for Wedyana's 8 year old who is

regressing and has a history of seizures!!! In addition there is NO one group

that has the answer all the time -there is ALWAYS good and bad.

Here's an investigative article below from the UK you may want to read as well.

~~~~~~~~article (reporter posed as parent of a child with autism)

The great autism rip-off ... How a huge industry feeds on parents desperate to

cure their children

By Barney Calman

There is little hope given to parents of children with autism.

Mainstream medicine offers no explanation for the cause of this life-long

learning disability, thought to affect one in 100, and there are no effective

treatments.

Perhaps the most cruel characteristic of the condition, which impairs

communication development and ability to relate to others, is that children

often develop normally until about two years of age, when they suddenly

'regress', becoming mute, withdrawn, refusing to make eye contact and prone to

tantrums.

Many never take part in mainstream education and some require full-time care,

even as adults.

Desperate: Jacqui , who has five children with ASD, knows the allure of a

promised 'cure' all too well

In the absence of solutions, desperate parents are increasingly turning to the

world of alternative medicine in their search for a cure.

In this burgeoning market, private doctors and clinics have sprung up across the

UK claiming they can treat or even 'reverse' the disorder.

Recent research published in the Journal Of Developmental And Behavioural

Paediatrics found that a third of parents of autistic children have tried

unproven 'alternative' treatments.

Worryingly, the study claims one in ten has used what the experts class as 'a

potentially harmful approach'.

Jacqui , 43, lectures around the country on Autistic Spectrum Disorder

(ASD). The Blackpool-based mother of seven, five of whom suffer from ASD, knows

all too well the powerful allure of the promised 'cure'.

After the family - including , 24, , 22, , 20, Luke,

19, , 18, Joe, 15, and Ben, 11 - appeared in the 2003 BBC documentary My

Family And Autism - dramatised in the film Magnificent 7, in which actress

Helena Bonham played a character based on Jacqui - they were inundated

with calls from alternative practitioners.

'You are so desperate in the early stages, you'll try anything,' says Jacqui. 'I

bought enzymes and supplements from America, which cost a fortune. I even paid

thousands for a special mattress, blankets and pillows with magnets sewn into

them that the sales people promised would do wonders but, of course, didn't

work. Autism is seen by some people as big business.

'I meet parents who want a cure and spend money in the hope they'll have a

normal child. I try to warn them that there is no evidence any of these things

work, but they'll often go ahead.'

To investigate Jacqui's claims and to discover exactly what is being offered to

parents, I visited five practitioners of 'biomedical' autism therapies posing as

a parent of a three-year-old boy diagnosed with ASD.

In each case my story - a 'typical' case of an autistic child, developed with

the help of medical experts - was the same: My 'son' Archie was born on

September 15, 2004, after an uncomplicated pregnancy and birth. He had all the

usual baby vaccines, including the MMR at 14 months, and developed normally

until around 18 months old when he became withdrawn and stopped speaking,

refusing to make eye contact.

Our GP referred us to a specialist who diagnosed him with ASD. I claimed to be

seeking help from more 'forward- thinking' doctors. During my investigation, I

was recommended expensive tests, vitamin supplements and special diets,

ointments, suppositories and injections to 'flush out toxic heavy metals',

bizarre-sounding high-pressure oxygen chambers and intravenous infusions of

hormones - and told in each case that they could bring about a complete recovery

from autism.

Yet medical experts say there is no evidence to support their claims, and in

fact many of the treatments I was offered were potentially harmful, and even

possibly fatal. The experience left me disturbed at the lack of regulation

surrounding these practices.

The cost of some treatment programmes ran into thousands. Yet some clinics

claimed to have six-month waiting lists. This week, new legislation aimed at

protecting consumers from 'rogue traders' came into force, prohibiting

businesses from making 'false claims' that a product is able to cure illness.

Although the practitioners stopped short of saying they could 'cure' autism,

each described to me instances of young patients who had been transformed by

their treatments and were able to lead totally normal lives and participate

fully in mainstream education.

The doctors I visited are all linked to the highly controversial US-based Defeat

Autism Now! (DAN!) group - a collection of fringe academics and doctors. DAN!

practitioners often recommend chelation therapy - injections intended to

detoxify the blood of heavy metals, the treatment that led to the death of

autistic five-year-old Abubakar Nadama, a doctor's son from Batheaston,

Somerset, in 2005. By speaking to autism experts and GPs, I was able to identify

five key players in the DAN! movement in the UK and Ireland.

My first encounter was with Dr O'Connell. His clinic is promoted by the

Autism File, a magazine that supports the DAN! approach.

Within moments of our first telephone conversation he tells me what, no doubt,

every parent of a child with autism longs to hear: 'Your son could recover.'

O'Connell claims education programmes for autistic children are like 'teaching a

dog tricks' and instead offers injections of 'a harmless, naturally produced

hormone' called 'secretin' which he claims can bring about a 'reversal' of

autistic symptoms. 'Two-thirds will improve by more than 30 per cent,' he

states.

'Any gains will be permanent.' So, why have I never been told about this

treatment? 'Because doctors in this country are in the dark ages,' comes the

reply.

During our appointment, Dr O'Connell - tall, balding and tanned - says: 'Nine

years ago, I gave the first injection of secretin to a child. There was a 76 per

cent improvement after just one treatment,' he begins.

He shows me a single sheet of paper covered with columns of numbers written in

biro. 'Each number represents a child I've treated. Parents fill out a form

measuring their child's behaviour before and after treatment.

'After a single treatment one child, who had never talked, went into his

parents' bedroom and started asking questions.' To be absolutely sure, I ask him

again if this treatment can cause children with autism to recover completely.

'Yes,' he replies. 'But we don't know why and a few children don't improve.' It

sounds incredible but I'm worried, I say, about my child having injections of a

hormone that isn't offered by mainstream medics.

'It's totally safe. I've treated more children with autism than any other doctor

in Britain,' he replies. 'The only limiting factor is money.' Treatment is

expensive. The telephone consultation cost £240, with the second at the office

a further £200.

He recommends a battery of blood, urine and stool tests available only from

private clinics, at a cost of £1,546. Subsequent consultations cost £150, and

each monthly secretin injection is £450. There is also mention of infusions of

'immune globulin' to bolster the immune system at £550.

'The more injections a child has, the better the result,' he says. 'Autism can

be a life sentence if you do nothing about it. And the sooner you start

treatment, the more chance it will work.'

At no point during our conversations does he ask to see any medical records. A

more sympathetic character is Dr Asha Rekha Chagarlamudi, a locum GP who runs

'The Autism Clinic' one day a week from her home, a semi-detached house on a

private estate in Bromley, South-East London. She's a parent of a child with

autism, so it would be hard to believe her motivations are anything but genuine.

Yet she recommends Archie should have intravenous chelation therapy and 40

sessions of Hyperbaric oxygen therapy (HBOT), which would involve my 'son'

sitting in a decompression chamber similar to those used by divers suffering the

bends.

She takes a medical history and says: 'Archie's symptoms are caused by

inflammation of the brain. Chelation therapy will help eliminate the poisons

from the blood which cause this - and HBOT will reduce the swelling.

'Chelation is most effective given by intravenous infusion, which you can only

get in America because doctors here won't do it.' She does not mention the

recent death caused by this treatment.

Harley Street-based Dr Damien Downing, who claims to be a 'leading figure in the

field of nutritional health', is also keen on chelation. During our consultation

I'm asked to fill in a questionnaire to assess the severity of Archie’s

condition.

Toxins are everywhere, rubbish dumps, incinerators, mobile phone masts,

microwaves, vaccines � " this caused your son’s autism,’ says Downing, who

charges £250 per consultation. ‘Chelation in the form of an that is rubbed on

to the skin will him of the toxins, and many children are completely normal

after. You must be committed to at a year of treatment, if not more, before you

see results.’

The treatment is a cause for debate even among committed DAN! practitioners. In

Dublin I meet Dr , a specialist in chelation therapy for adults,

who tells me tries to dissuade parents from giving their autistic children

intravenous infusions ‘not because it’s dangerous, but because it isn’t

effective in clearing mercury from the blood’. Consequently, Archie was not

suitable for treatment.

He also warns that some ‘DAN! doctors’ are less than reputable. ‘All need

to do is attend one conference in the US and you can say you’re DAN! doctor

� " and many of them aren’t medically trained.’

Dr Lorene Amet, of the Autism Treatment Trust in Edinburgh, is one such

non-medic. Her doctorate is in HIV biology although she doesn’t clarify this

during the £120 consultation.

Amet takes a medical history, asks about behaviour and diet, and recommends a

series of blood and urine tests that she says are not available on the NHS

because ‘doctors don’t know about them’.

She continues: ‘The tests give us a complete picture of your child’s health

and what has caused his autism. From the results we will design a diet and

supplements plan. He could recover completely but early intervention is the key

� " you must act now or you’ll regret it.’

I’ve been offered a bewildering number of treatments, but could any of them be

right? Could any really work? At the end of the investigation I speak to

Mills, a director of Research Autism, a coalition of parents, those with autism,

academics and medical experts, set up by the National Autistic Society (NAS) and

the Institute of Child Health to study new treatments for autism.

‘Your experiences are not uncommon,’ he says. ‘There is no evidence that

any of these treatments work. There is evidence that some do not work, and even

could do harm.’

Mills, who has worked in the field of autism research for the past 30 years,

describes the helplessness and despair parents feel when trying one unsuccessful

treatment after another.

‘Parents often tell us they weren’t made aware of possible negative effects

and many spend thousands, running up bills on credit cards, on treatments that

don’t work.

‘Many of the practitioners who sell these treatments are no better than

snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack

of regulation means anyone can set themselves up and claim to be able to

successfully treat autism, without any proof that it’s actually possible,’

he says.

Still, I can’t help but think that if Archie were real, I’d be willing to

try anything, and pay anything for a chance to help him live a normal life.

Dr Gillian Baird, consultant paedi-atrician at Guy’s Hospital, London, and a

leading expert on autism, explains that although autism is incurable, some

children can improve.

‘We know that there is something biologically different about the brain

function of children and adults with autism, but we don’t know what that is or

what causes it,’ she says.

‘There are accounts of treatments that have helped but this is not the same as

evidence. The reason some parents believe they see improvements is because

autism A is a condition that changes over time. And behav-iour in all of us can

be altered by environment and what we put into our bodies.’

She warns parents that invasive treatments, such as injections, carry a risk of

infection.

Mills advises parents to ask to see research to back up any claims and ask for

copies of any published studies to discuss with a GP or consultant.

‘These practitioners often claim mainstream doctors aren’t interested in

helping children get better. This is not only completely untrue but hurtful.

Doctors who devote their lives to working with them every day would like there

to be a successful treatment for autism as much as anyone � " they know just

how desperate parents are for an answer.’

Jacqui urges parents of children with autism to think again before

subjecting them to unproven treatments. ‘Perhaps we should begin to look at

autism as another way of being, instead of hoping to find a cure,’ she says.

‘These doctors promise they can make autistic children “normalâ€. But who

is to say what normal is?’

For information about autism treatments, visit www.researchautism.net.

Here Research Autism Director Mills gives his verdict on the treatments

recommended by the doctors. The Mail on Sunday then also offered the doctors a

chance to comment on the findings of our investigation.

THE CONSULTATIONS

Here Research Autism Director Mills gives his verdict on the treatments

recommended by the doctors. The Mail on Sunday then also offered the doctors a

chance to comment on the findings of our investigation.

Who: Dr O’Connell, 41 Elystan Place, London

Consultation fee: £350

Recommends: Blood and urine tests, secretin injections once a month, immune

globulin infusions and dietary supplements

Cost: £1,996

Mills' verdict: Secretin is a hormone that helps digestion. Some think

its injection will ensure food is properly digested and stop harmful chemicals

from food travelling to the brain.

There is overwhelming evidence from double blind clinical trials to show that

secretin works no better than a placebo in treating autism. But some studies

report there are negative effects. The use of secretin is not recommended for

people with autism.

Dr O'Connell says now: I would agree to treatment only after examining a child.

With any drug there are studies that show it doesn’t work, as well as those

that do.

The studies that found secretin didn’t work were badly designed. I’ve not

published my findings in peer reviewed journals because I am unwilling to submit

children to double blind trials.

Who: Dr Lorene Amet at the Autism Treatment Trust, 29A Stafford Street,

Edinburgh

Consultation fee: £120

Recommends: Urine tests and tests for DNA oxidation; hair test for heavy metals;

a four-hour appointment to look at test results; wheat and dairy diet plan; and

supplements

Cost: Tests £480, follow-up appointment £400

Mills' verdict: Some children with autism have a higher incidence of gut

problems, and there is anecdotal evidence that diet, especially one that is

wheat and dairy-free, is helpful in treating the physical and behavioural

symptoms of autism, but these are not regarded as curative treatments. Because

autism is so broad and is not a single condition, there are no specific

laboratory tests to determine the causes.

Dr Lorene Amet says now: We have had positive reports from eight out of ten

parents. Some children do not progress. Mainstream medicine has failed many of

the children we see. We are here to help parents safely explore alternative

treatments. More research is needed and we are applying for funding.

Who: Dr Asha Rekha Chagarlamudi, The Autism Clinic, Bromley, South-East London

Consultation fee: £100 (she later agrees to waive this if there are 'problems

with money')

Recommends: Blood, urine and stool analysis, hyperbaric oxygen therapy,

chelation therapy

Cost: Tests £775, 40 HBOT sessions £400

Mills' verdict: Hyperbaric therapy is the administering of oxygen at a

higher

than atmospheric pressure to a patient in a pressurised chamber to increase

oxygen absorption in bodily tissue. It is usually used for decompression

sickness or carbon monoxide poisoning. Side-effects include trauma to the ears

due to pressure and oxygen toxicity, which causes nausea, vomiting, convulsions,

inflammation and fluid accumulation in the lungs. There is little evidence it is

effective for autistic children. Use of oxygen has risks and we would advise

caution.

Dr Chagarlamudi says now: HBOT is being given to children with autism in Dundee

on the NHS. There have been no double blind trials but smaller studies are

needed before that happens. Chelation has risks but is safe when carried out

correctly. I make a third less per day from my autism clinic than I do in

general practice. I believe these treatments do cause improvement in children.

Someone has to start trying to so something or we will never find a cure.

Who: Dr Damien Downing, 144 Harley Street

Consultation fee: £250

Recommends: Urine toxic metal test and blood deficiency tests. Dependent on

results, chelation therapy - administered topically as oil rubbed into the skin

Costs: Tests £200, follow-up appointment £150, chelation £97 per seven

applications

Mills' verdict: Chelation can be dangerous. Chemical compounds injected

into the bloodstream, taken orally, topically or by suppositing, bind to metals

that are present in toxic concentrations which are excreted from the body. There

is no scientific evidence it is effective in the treatment of autism.

Side-effects include nausea, vomiting, headaches and kidney damage.

Dr Downing says now: Heavy metal damage as a cause of autism is coming to be

widely accepted. Many doctors agree that the removal of metals is the most

useful treatment available. There is no evidence that chelation could be life

threatening except when given by injection.

AUTISM EXPLAINED

The term 'autism' refers not to a single illness but to part of a wide range of

conditions - so-called Autistic Spectrum Disorder (ASD) - with many features

that may or may not be present in a given child.

Classic autism, which affects one in 100 children in the UK, according to latest

figures, typically involves associated learning difficulties and problems with

language, as well as a tendency for obsessive and repetitive behaviour, with

varying degrees of severity.

http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-hug\

e-industry-feeds-parents-desperate-cure-children.html#

=====