Re: Does BioMed actually work for Autism ?

[Guest guest]

Hi Sayani,I joined this group about 2 years ago. My daughter was 9 when we started doing biomed. There was a time (3 years ago) when Noor would just repeat the same phrases over and over again or ask the same questions over and over again. I felt like pulling my hair out.She would also say things completely out of context 90% of the time. As a child (age 5-6) she appeared indifferent towards me.Over the past couple of years we have seen a number of improvements. Noor's language skills have improved; 3 years ago she was talking but she wasn't "conversing". Now we can have a conversation (albeit basic) - she certainly isn't at par with her neurotypical peers but she will ask me questions, tell me that I'm looking nice, relate

things that happened at school (or other events that have taken place in the past). She has become more social. She has started asking me if she can visit her cousins or if they can come over. She doesn't interact with them "properly" but she tries in her own way. Overall she is more in touch with the world - she really was in her own world before.Another real positive and I put this down to biomed. Noor suffers from benign epilepsy. She was having very brief seizures 4-5 times a month. These were not fully controlled by her prescription drugs (even after 2 years on the meds) but I was advised not to increase the dosage. Over the past 7-8 months I have not witnessed a seizure. I hope and pray that this continues.These improvements are so encouraging. There are plateaus along the way and sometimes you do come up against a brick wall but as Natasa said on another thread you've just got to keep

searching.Welcome! I think I speak for everyone when I say that it's great to have someone from the medical profession on board!Good luck.Zahra To: Autism-Biomedical-Europe Sent: Wednesday, 30 November 2011, 22:58 Subject: Re: Does BioMed actually work for Autism ?

Sayani

We started biomedical 3 years ago. My son still doesn't have any diagnosis because he is improving so fast. When we started he was 3.5 and barely verbal, he would have horrible tantrums till he would fall asleep from exhaustion. He banged his head, hit us, didn't always react when we called him, ran away without looking back. We returned to the UK, from a 2 year break abroad, to our flat, which we bought when he was 1 and a perfect baby. I got out of the car and realised how busy the street was. I said to my mum, that's it I will have to spend the rest of my life inside the flat for fear that he will be killed by a car. At this point we started questioning and researching what was going on with him.

I can totally understand what you are feeling: I am a psychologist and had worked in psychiatric hospitals both in Poland and the UK and had seen kids, behaving like my son at age 3, in residential units. Jumping into biomedical has been life changing for me: the whole concept of "mental health" has been destroyed and re-organised . I no longer believe you can separate mental from physical because I myself witnessed the changes biomedical treatments caused in my son. He is 98% fine now; for an outsider he looks and behaves like an average 6 year old. The only problems which are left are a bit of language delay and weak pencil skills, but his systems are still struggling.

He stole a bit of cream from our fridge a month ago and started lining up everything, woke up in the middle of the night very agitated and said he didn't know what was going on but he felt sad and angry, started hitting us and crying at the same time. All this passed the next day, but it gave us a fright.

I hope his systems will recover to the point that eating something he is sensitive to will not affect him so much, and I hope he will not have to be on a special diet for the rest of his life, but if he does it's still worth it. I already have my perfect boy back ))))))))))

All the best. We are in Edinburgh if you would like to chat or borrow some books

Kasia

[Guest guest]

Hi Sayani,I joined this group about 2 years ago. My daughter was 9 when we started doing biomed. There was a time (3 years ago) when Noor would just repeat the same phrases over and over again or ask the same questions over and over again. I felt like pulling my hair out.She would also say things completely out of context 90% of the time. As a child (age 5-6) she appeared indifferent towards me.Over the past couple of years we have seen a number of improvements. Noor's language skills have improved; 3 years ago she was talking but she wasn't "conversing". Now we can have a conversation (albeit basic) - she certainly isn't at par with her neurotypical peers but she will ask me questions, tell me that I'm looking nice, relate

things that happened at school (or other events that have taken place in the past). She has become more social. She has started asking me if she can visit her cousins or if they can come over. She doesn't interact with them "properly" but she tries in her own way. Overall she is more in touch with the world - she really was in her own world before.Another real positive and I put this down to biomed. Noor suffers from benign epilepsy. She was having very brief seizures 4-5 times a month. These were not fully controlled by her prescription drugs (even after 2 years on the meds) but I was advised not to increase the dosage. Over the past 7-8 months I have not witnessed a seizure. I hope and pray that this continues.These improvements are so encouraging. There are plateaus along the way and sometimes you do come up against a brick wall but as Natasa said on another thread you've just got to keep

searching.Welcome! I think I speak for everyone when I say that it's great to have someone from the medical profession on board!Good luck.Zahra To: Autism-Biomedical-Europe Sent: Wednesday, 30 November 2011, 22:58 Subject: Re: Does BioMed actually work for Autism ?

Sayani

We started biomedical 3 years ago. My son still doesn't have any diagnosis because he is improving so fast. When we started he was 3.5 and barely verbal, he would have horrible tantrums till he would fall asleep from exhaustion. He banged his head, hit us, didn't always react when we called him, ran away without looking back. We returned to the UK, from a 2 year break abroad, to our flat, which we bought when he was 1 and a perfect baby. I got out of the car and realised how busy the street was. I said to my mum, that's it I will have to spend the rest of my life inside the flat for fear that he will be killed by a car. At this point we started questioning and researching what was going on with him.

I can totally understand what you are feeling: I am a psychologist and had worked in psychiatric hospitals both in Poland and the UK and had seen kids, behaving like my son at age 3, in residential units. Jumping into biomedical has been life changing for me: the whole concept of "mental health" has been destroyed and re-organised . I no longer believe you can separate mental from physical because I myself witnessed the changes biomedical treatments caused in my son. He is 98% fine now; for an outsider he looks and behaves like an average 6 year old. The only problems which are left are a bit of language delay and weak pencil skills, but his systems are still struggling.

He stole a bit of cream from our fridge a month ago and started lining up everything, woke up in the middle of the night very agitated and said he didn't know what was going on but he felt sad and angry, started hitting us and crying at the same time. All this passed the next day, but it gave us a fright.

I hope his systems will recover to the point that eating something he is sensitive to will not affect him so much, and I hope he will not have to be on a special diet for the rest of his life, but if he does it's still worth it. I already have my perfect boy back ))))))))))

All the best. We are in Edinburgh if you would like to chat or borrow some books

Kasia

[Guest guest]

I'm an autistic whose treating herself. i was also a sceptic at 1st. If biomed includes gluten and casein (and other free) diets then I would say it has worked for me.B12 injections have helped some kids cognition on here.

Chelation cured my scotopic sensitivity syndrome (an incurable condition).i rarely get colds due to the amount of supplements and better diet that I have. My constipation has improved tremendously (if you exclude the rectocele).

My behaviour and cognitive abilities are much better. i can remember stuff so i dont have to ask repetitive questions anymore. Yeah i still have the occasional meltdown but it's not as severe as it used to be bar 1 incident.

Other positive side effects include my mental health being improved since  HFA/aspergers isn't considered treatable by the NHS.i was on risperdal but it sent me psychotic, gluten, dairy and other frees have been the only alternative as the NHS wont stop using amalgam fillings and wont prescribe my special foods or accept you can have CPTSD and autism in the same patient.

-- is

[Guest guest]

is I do hope you are very proud of yourself, you have made such amazing progress although I know it hasn;t always been easy, you stuck with it looking for a brighter healthier future - well done!

Mx

I'm an autistic whose treating herself. i was also a sceptic at 1st. If biomed includes gluten and casein (and other free) diets then I would say it has worked for me.B12 injections have helped some kids cognition on here. Chelation cured my scotopic sensitivity syndrome (an incurable condition).i rarely get colds due to the amount of supplements and better diet that I have. My constipation has improved tremendously (if you exclude the rectocele).My behaviour and cognitive abilities are much better. i can remember stuff so i dont have to ask repetitive questions anymore. Yeah i still have the occasional meltdown but it's not as severe as it used to be bar 1 incident.Other positive side effects include my mental health being improved since HFA/aspergers isn't considered treatable by the NHS.i was on risperdal but it sent me psychotic, gluten, dairy and other frees have been the only alternative as the NHS wont stop using amalgam fillings and wont prescribe my special foods or accept you can have CPTSD and autism in the same patient.-- is

[Guest guest]

is I do hope you are very proud of yourself, you have made such amazing progress although I know it hasn;t always been easy, you stuck with it looking for a brighter healthier future - well done!

 Thanks for your encouragement mandi much appreciated.I've had to go off the ALA for now because i was sleeping through my rounds so im just on 25mg DMSA every 4 hours according to the AC protocol.

-- is

[Guest guest]

Hi there,

In terms of unproven and unsafe treatments, the medical profession have

suggested many to us. For instance, they would rather my son were on

anti-psychotic drugs at age 9 (not researched in children) than give him

antibiotic therapy.

Everyone has covered nearly every aspect of your email but there is tons of

research out there relative to your son if you start digging.

Your training means you are probably coming at this from an incurable genetic

standpoint. We think differently. You treat as groups, we treat the

individual.

There is tons of research. Look in pubmed and the many databases you are

privileged to access as a doctor:

Autoimmunity

Gut problems

Sensory issues

Movement Disorders

Hyperactivity and its causes

MMR (if he had it)

Viral infection

To name but a few if you need research.

My son recovered 90% at age four from severe autism after a viral encepalopathy

(CMV) which he suffered at about 16 months. He suffered three regressions, due

to PANDAS (Paediatric Autoimmune Disease Associated with Strep) which was not

widely known about seven years ago, and which is still controversial. With

treatment all tics and chorea have gone, only to return with a vengeance if we

run out of antibiotics or he is exposed to a severe case of strep or virus.

This journey could have been quite different if we had appreciated (which is

well covered in research) that when one treats for a virus and ignores the

possibility of secondary bacterial infection, one can leave an immune deficient

or immune dysregulated person wide open to problems. He is now on prophylaxis

and that presents its own set of risks, only to say that without this, our Son

would be a wreck. Thanks to the parents who have helped us and our own research

and understanding of our son as an individual he is able to cope and he

continues to make good progress.

I hope you find the answers you seek but not all of them are covered in research

as you appreciate.

Best of luck with it all,

Eileen

>

> Hi all

>

> I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

>

> I am a GP and I am unable to find any scientific evidence that Biomed actually

work or makes any difference. Some children improve as they get older anyways.

>

> The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

>

> I am not to or for biomed as of yet but would be interested in getting parents

opinion on bio med . Lack of evidence is not proof that something does not work

.. In traditional medicine research and trials are important but would be

difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

>

> ANy comments would be appreciated.

>

> thanks

>

[Guest guest]

Hi there,

In terms of unproven and unsafe treatments, the medical profession have

suggested many to us. For instance, they would rather my son were on

anti-psychotic drugs at age 9 (not researched in children) than give him

antibiotic therapy.

Everyone has covered nearly every aspect of your email but there is tons of

research out there relative to your son if you start digging.

Your training means you are probably coming at this from an incurable genetic

standpoint. We think differently. You treat as groups, we treat the

individual.

There is tons of research. Look in pubmed and the many databases you are

privileged to access as a doctor:

Autoimmunity

Gut problems

Sensory issues

Movement Disorders

Hyperactivity and its causes

MMR (if he had it)

Viral infection

To name but a few if you need research.

My son recovered 90% at age four from severe autism after a viral encepalopathy

(CMV) which he suffered at about 16 months. He suffered three regressions, due

to PANDAS (Paediatric Autoimmune Disease Associated with Strep) which was not

widely known about seven years ago, and which is still controversial. With

treatment all tics and chorea have gone, only to return with a vengeance if we

run out of antibiotics or he is exposed to a severe case of strep or virus.

This journey could have been quite different if we had appreciated (which is

well covered in research) that when one treats for a virus and ignores the

possibility of secondary bacterial infection, one can leave an immune deficient

or immune dysregulated person wide open to problems. He is now on prophylaxis

and that presents its own set of risks, only to say that without this, our Son

would be a wreck. Thanks to the parents who have helped us and our own research

and understanding of our son as an individual he is able to cope and he

continues to make good progress.

I hope you find the answers you seek but not all of them are covered in research

as you appreciate.

Best of luck with it all,

Eileen

>

> Hi all

>

> I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

>

> I am a GP and I am unable to find any scientific evidence that Biomed actually

work or makes any difference. Some children improve as they get older anyways.

>

> The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

>

> I am not to or for biomed as of yet but would be interested in getting parents

opinion on bio med . Lack of evidence is not proof that something does not work

.. In traditional medicine research and trials are important but would be

difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

>

> ANy comments would be appreciated.

>

> thanks

>

[Guest guest]

Hi there,

In terms of unproven and unsafe treatments, the medical profession have

suggested many to us. For instance, they would rather my son were on

anti-psychotic drugs at age 9 (not researched in children) than give him

antibiotic therapy.

Everyone has covered nearly every aspect of your email but there is tons of

research out there relative to your son if you start digging.

Your training means you are probably coming at this from an incurable genetic

standpoint. We think differently. You treat as groups, we treat the

individual.

There is tons of research. Look in pubmed and the many databases you are

privileged to access as a doctor:

Autoimmunity

Gut problems

Sensory issues

Movement Disorders

Hyperactivity and its causes

MMR (if he had it)

Viral infection

To name but a few if you need research.

My son recovered 90% at age four from severe autism after a viral encepalopathy

(CMV) which he suffered at about 16 months. He suffered three regressions, due

to PANDAS (Paediatric Autoimmune Disease Associated with Strep) which was not

widely known about seven years ago, and which is still controversial. With

treatment all tics and chorea have gone, only to return with a vengeance if we

run out of antibiotics or he is exposed to a severe case of strep or virus.

This journey could have been quite different if we had appreciated (which is

well covered in research) that when one treats for a virus and ignores the

possibility of secondary bacterial infection, one can leave an immune deficient

or immune dysregulated person wide open to problems. He is now on prophylaxis

and that presents its own set of risks, only to say that without this, our Son

would be a wreck. Thanks to the parents who have helped us and our own research

and understanding of our son as an individual he is able to cope and he

continues to make good progress.

I hope you find the answers you seek but not all of them are covered in research

as you appreciate.

Best of luck with it all,

Eileen

>

> Hi all

>

> I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

>

> I am a GP and I am unable to find any scientific evidence that Biomed actually

work or makes any difference. Some children improve as they get older anyways.

>

> The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

>

> I am not to or for biomed as of yet but would be interested in getting parents

opinion on bio med . Lack of evidence is not proof that something does not work

.. In traditional medicine research and trials are important but would be

difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

>

> ANy comments would be appreciated.

>

> thanks

>

[Guest guest]

Eileen and other have made excellent points. I hope you have success on your

biomed journey and it would be great to have another doctor available to help

our children!

Re Eileen's post, I especially agree re the willingness to use dangerous drugs

on autistic children (and other children) to address psychiatric/behavioural

issues where the safety hasn't been properly investigated first.

All I would like to add is that my son (severe, with learning disability) may

have been damaged by the whooping cough element of the old whole cell DTP: he

had a severe reaction to both doses he received. He went on to regress and to

have Infantile Spasms.

The neurologist who then treated him, when I raise the question of possible

vaccine damage as a cause of his Infantile Spasms, said they knew it couldn't be

the whooping cough vaccine because a very large study had been done in the UK

which proved the whooping cough vaccine was not a cause of Infantile Spasms.

Wrong: the study was underpowered and not big enough to detect this possible

effect. Also the study was irrelevant because, at the time of the study, the

vaccine schedule was less aggressive than it is now: the first dose of the DTP

wasn't given until the child was 3 months old. They now give it 8 weeks after

birth. As my son was premature, he received the vaccine when his corrected age

was only 2 weeks, and his blood brain barrier wasn't established. He had also

been put on 2 antibiotics at birth which meant he had no gut flora to deal with

the mercury which was then in the vaccine.

My GP and the Consultant neurologist knew none of this (and I guess that very

few doctors would have known): they just followed whatever the official

propaganda of the vaccine specialists at the Department of Health dictated. In

fact, before my son was first vaccinated, the GP told me the old whooping cough

vaccine was dangerous but it had been completely reformulated and was now safe.

However he didn't know that the entire UK at that time was still using the old,

dangerous and cheap vaccine. And he didn't know that the Green Book said if

there was a severe reaction to a dose of the whole cell whooping cough vaccine

no more doses should be given. Vaccines are left to nurses usually, I am told

and because of all the official assurances there is a virtually complete

reluctance to ever consider the possibility that they could be harmful. There

are other parents on this list who suspect the whooping cough vaccine in their

child's downfall.

Margaret

> >

> > Hi all

> >

> > I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

> >

> > I am a GP and I am unable to find any scientific evidence that Biomed

actually work or makes any difference. Some children improve as they get older

anyways.

> >

> > The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

> >

> > I am not to or for biomed as of yet but would be interested in getting

parents opinion on bio med . Lack of evidence is not proof that something does

not work . In traditional medicine research and trials are important but would

be difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

> >

> > ANy comments would be appreciated.

> >

> > thanks

> >

>

[Guest guest]

Eileen and other have made excellent points. I hope you have success on your

biomed journey and it would be great to have another doctor available to help

our children!

Re Eileen's post, I especially agree re the willingness to use dangerous drugs

on autistic children (and other children) to address psychiatric/behavioural

issues where the safety hasn't been properly investigated first.

All I would like to add is that my son (severe, with learning disability) may

have been damaged by the whooping cough element of the old whole cell DTP: he

had a severe reaction to both doses he received. He went on to regress and to

have Infantile Spasms.

The neurologist who then treated him, when I raise the question of possible

vaccine damage as a cause of his Infantile Spasms, said they knew it couldn't be

the whooping cough vaccine because a very large study had been done in the UK

which proved the whooping cough vaccine was not a cause of Infantile Spasms.

Wrong: the study was underpowered and not big enough to detect this possible

effect. Also the study was irrelevant because, at the time of the study, the

vaccine schedule was less aggressive than it is now: the first dose of the DTP

wasn't given until the child was 3 months old. They now give it 8 weeks after

birth. As my son was premature, he received the vaccine when his corrected age

was only 2 weeks, and his blood brain barrier wasn't established. He had also

been put on 2 antibiotics at birth which meant he had no gut flora to deal with

the mercury which was then in the vaccine.

My GP and the Consultant neurologist knew none of this (and I guess that very

few doctors would have known): they just followed whatever the official

propaganda of the vaccine specialists at the Department of Health dictated. In

fact, before my son was first vaccinated, the GP told me the old whooping cough

vaccine was dangerous but it had been completely reformulated and was now safe.

However he didn't know that the entire UK at that time was still using the old,

dangerous and cheap vaccine. And he didn't know that the Green Book said if

there was a severe reaction to a dose of the whole cell whooping cough vaccine

no more doses should be given. Vaccines are left to nurses usually, I am told

and because of all the official assurances there is a virtually complete

reluctance to ever consider the possibility that they could be harmful. There

are other parents on this list who suspect the whooping cough vaccine in their

child's downfall.

Margaret

> >

> > Hi all

> >

> > I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

> >

> > I am a GP and I am unable to find any scientific evidence that Biomed

actually work or makes any difference. Some children improve as they get older

anyways.

> >

> > The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

> >

> > I am not to or for biomed as of yet but would be interested in getting

parents opinion on bio med . Lack of evidence is not proof that something does

not work . In traditional medicine research and trials are important but would

be difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

> >

> > ANy comments would be appreciated.

> >

> > thanks

> >

>

[Guest guest]

Eileen and other have made excellent points. I hope you have success on your

biomed journey and it would be great to have another doctor available to help

our children!

Re Eileen's post, I especially agree re the willingness to use dangerous drugs

on autistic children (and other children) to address psychiatric/behavioural

issues where the safety hasn't been properly investigated first.

All I would like to add is that my son (severe, with learning disability) may

have been damaged by the whooping cough element of the old whole cell DTP: he

had a severe reaction to both doses he received. He went on to regress and to

have Infantile Spasms.

The neurologist who then treated him, when I raise the question of possible

vaccine damage as a cause of his Infantile Spasms, said they knew it couldn't be

the whooping cough vaccine because a very large study had been done in the UK

which proved the whooping cough vaccine was not a cause of Infantile Spasms.

Wrong: the study was underpowered and not big enough to detect this possible

effect. Also the study was irrelevant because, at the time of the study, the

vaccine schedule was less aggressive than it is now: the first dose of the DTP

wasn't given until the child was 3 months old. They now give it 8 weeks after

birth. As my son was premature, he received the vaccine when his corrected age

was only 2 weeks, and his blood brain barrier wasn't established. He had also

been put on 2 antibiotics at birth which meant he had no gut flora to deal with

the mercury which was then in the vaccine.

My GP and the Consultant neurologist knew none of this (and I guess that very

few doctors would have known): they just followed whatever the official

propaganda of the vaccine specialists at the Department of Health dictated. In

fact, before my son was first vaccinated, the GP told me the old whooping cough

vaccine was dangerous but it had been completely reformulated and was now safe.

However he didn't know that the entire UK at that time was still using the old,

dangerous and cheap vaccine. And he didn't know that the Green Book said if

there was a severe reaction to a dose of the whole cell whooping cough vaccine

no more doses should be given. Vaccines are left to nurses usually, I am told

and because of all the official assurances there is a virtually complete

reluctance to ever consider the possibility that they could be harmful. There

are other parents on this list who suspect the whooping cough vaccine in their

child's downfall.

Margaret

> >

> > Hi all

> >

> > I was wondering if you could advice me. I have a 5 yr old boy who has no

language development as of yet along with difficulties is social interaction. No

ADHD and otherwise he is a very happy boy.

> >

> > I am a GP and I am unable to find any scientific evidence that Biomed

actually work or makes any difference. Some children improve as they get older

anyways.

> >

> > The question is - how do we know that biomed actually works - were the

benefits that showed (months to years) after starting biomed actually due to the

bio med or were these children who would have improved anyways?

> >

> > I am not to or for biomed as of yet but would be interested in getting

parents opinion on bio med . Lack of evidence is not proof that something does

not work . In traditional medicine research and trials are important but would

be difficult to subject children (atleast in the developed world ) to such

unproven treatments which make getting the evidence even harder..

> >

> > ANy comments would be appreciated.

> >

> > thanks

> >

>