Help for a friend please - any ideas?

February 2, 2011

Dear All, I have a friend who is really struggling with her son. He is 9 years

old with various diagnoses including mild ASD, DCD and hypermobility. She is

getting no help from the NHS and I wonder of this is because they do not know

what to do.

His biggest problems at the moment are migraines and heavy nose bleeds - these

nose bleeds can happen several times a day & at night. His legs also swell up.

He has been hospitalised with the severe nose bleeds and he can lose excessive

amounts of blood which can consist of large clots. He had HSP and when he had

the henoch schonlein purpura, he had it on his legs first then hands to elbows,

then his genital area. A few weeks later it re appeared on his head and face. He

was quite poorly with this and he suffered from temporary junior arthritis in

mainly the knees and hands.

He has been put on Piztifen 1mg at night for the migraines and referred to a

Clinical Psychologist as whilst this is not Chronic Fatigue it is best to manage

it as though it is(these are the Paed's words not mine!!!)

When he was born he had positive swabs for group B Strep and was in SCBU and

given intravenous antibiotics. He has ahd pneumonia and recurrent tonsilitis.

Blood tests have revealed a clotting disorder.

Apart from TST can anyone suggest what might be going on and how my friend can

help her son. She is desperate now as she has put in a complaint to the PCT and

all help has been suspended following the complaint. Many times she has been

labelled herself by the professionals.

I have suggested that she contacts the Breakspear.

Many thanks

February 2, 2011

Is his blood pressure high?

> To: Autism-Biomedical-Europe > Date: Wed, 2 Feb 2011 09:12:50 +0000> Subject: Help for a friend please - any ideas?> > Dear All, I have a friend who is really struggling with her son. He is 9 years old with various diagnoses including mild ASD, DCD and hypermobility. She is getting no help from the NHS and I wonder of this is because they do not know what to do.> > His biggest problems at the moment are migraines and heavy nose bleeds - these nose bleeds can happen several times a day & at night. His legs also swell up. He has been hospitalised with the severe nose bleeds and he can lose excessive amounts of blood which can consist of large clots. He had HSP and when he had the henoch schonlein purpura, he had it on his legs first then hands to elbows, then his genital area. A few weeks later it re appeared on his head and face. He was quite poorly with this and he suffered from temporary junior arthritis in mainly the knees and hands.> > He has been put on Piztifen 1mg at night for the migraines and referred to a Clinical Psychologist as whilst this is not Chronic Fatigue it is best to manage it as though it is(these are the Paed's words not mine!!!)> > When he was born he had positive swabs for group B Strep and was in SCBU and given intravenous antibiotics. He has ahd pneumonia and recurrent tonsilitis. Blood tests have revealed a clotting disorder.> > Apart from TST can anyone suggest what might be going on and how my friend can help her son. She is desperate now as she has put in a complaint to the PCT and all help has been suspended following the complaint. Many times she has been labelled herself by the professionals.> > I have suggested that she contacts the Breakspear.> > Many thanks> > > > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

February 2, 2011

Good point - I will ask.

>

> Is his blood pressure high?

>

> > To: Autism-Biomedical-Europe

> > From: m.kidson60@...

> > Date: Wed, 2 Feb 2011 09:12:50 +0000

> > Subject: Help for a friend please - any ideas?

> >

> > Dear All, I have a friend who is really struggling with her son. He is 9

years old with various diagnoses including mild ASD, DCD and hypermobility. She

is getting no help from the NHS and I wonder of this is because they do not know

what to do.

> >

> > His biggest problems at the moment are migraines and heavy nose bleeds -

these nose bleeds can happen several times a day & at night. His legs also swell

up. He has been hospitalised with the severe nose bleeds and he can lose

excessive amounts of blood which can consist of large clots. He had HSP and when

he had the henoch schonlein purpura, he had it on his legs first then hands to

elbows, then his genital area. A few weeks later it re appeared on his head and

face. He was quite poorly with this and he suffered from temporary junior

arthritis in mainly the knees and hands.

> >

> > He has been put on Piztifen 1mg at night for the migraines and referred to a

Clinical Psychologist as whilst this is not Chronic Fatigue it is best to manage

it as though it is(these are the Paed's words not mine!!!)

> >

> > When he was born he had positive swabs for group B Strep and was in SCBU and

given intravenous antibiotics. He has ahd pneumonia and recurrent tonsilitis.

Blood tests have revealed a clotting disorder.

> >

> > Apart from TST can anyone suggest what might be going on and how my friend

can help her son. She is desperate now as she has put in a complaint to the PCT

and all help has been suspended following the complaint. Many times she has been

labelled herself by the professionals.

> >

> > I have suggested that she contacts the Breakspear.

> >

> > Many thanks

> >

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

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical advice.

If you need medical advice, please seek it from a suitably qualified

practitioner.

> >

February 2, 2011

Last assessment BP was 116/80

> >

> > Is his blood pressure high?

> >

> > > To: Autism-Biomedical-Europe

> > > From: m.kidson60@

> > > Date: Wed, 2 Feb 2011 09:12:50 +0000

> > > Subject: Help for a friend please - any ideas?

> > >

> > > Dear All, I have a friend who is really struggling with her son. He is 9

years old with various diagnoses including mild ASD, DCD and hypermobility. She

is getting no help from the NHS and I wonder of this is because they do not know

what to do.

> > >

> > > His biggest problems at the moment are migraines and heavy nose bleeds -

these nose bleeds can happen several times a day & at night. His legs also swell

up. He has been hospitalised with the severe nose bleeds and he can lose

excessive amounts of blood which can consist of large clots. He had HSP and when

he had the henoch schonlein purpura, he had it on his legs first then hands to

elbows, then his genital area. A few weeks later it re appeared on his head and

face. He was quite poorly with this and he suffered from temporary junior

arthritis in mainly the knees and hands.

> > >

> > > He has been put on Piztifen 1mg at night for the migraines and referred to

a Clinical Psychologist as whilst this is not Chronic Fatigue it is best to

manage it as though it is(these are the Paed's words not mine!!!)

> > >

> > > When he was born he had positive swabs for group B Strep and was in SCBU

and given intravenous antibiotics. He has ahd pneumonia and recurrent

tonsilitis. Blood tests have revealed a clotting disorder.

> > >

> > > Apart from TST can anyone suggest what might be going on and how my friend

can help her son. She is desperate now as she has put in a complaint to the PCT

and all help has been suspended following the complaint. Many times she has been

labelled herself by the professionals.

> > >

> > > I have suggested that she contacts the Breakspear.

> > >

> > > Many thanks

> > >

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

> > >

> > > DISCLAIMER

> > > No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably qualified

practitioner.

> > >

February 2, 2011

Need to look to correct whatever is found in the full blood tests - red/white/lymphocytes etc - about 50 markers

And try to get some Genova urine and stool tests done also to correct metabolic abnormalities in amino acid tests

Thats the first things

> To: Autism-Biomedical-Europe > Date: Wed, 2 Feb 2011 10:34:02 +0000> Subject: Re: Help for a friend please - any ideas?> > Last assessment BP was 116/80> > > > > > >> > > > > > Is his blood pressure high?> > > > > > > To: Autism-Biomedical-Europe > > > > From: m.kidson60@> > > > Date: Wed, 2 Feb 2011 09:12:50 +0000> > > > Subject: Help for a friend please - any ideas?> > > > > > > > Dear All, I have a friend who is really struggling with her son. He is 9 years old with various diagnoses including mild ASD, DCD and hypermobility. She is getting no help from the NHS and I wonder of this is because they do not know what to do.> > > > > > > > His biggest problems at the moment are migraines and heavy nose bleeds - these nose bleeds can happen several times a day & at night. His legs also swell up. He has been hospitalised with the severe nose bleeds and he can lose excessive amounts of blood which can consist of large clots. He had HSP and when he had the henoch schonlein purpura, he had it on his legs first then hands to elbows, then his genital area. A few weeks later it re appeared on his head and face. He was quite poorly with this and he suffered from temporary junior arthritis in mainly the knees and hands.> > > > > > > > He has been put on Piztifen 1mg at night for the migraines and referred to a Clinical Psychologist as whilst this is not Chronic Fatigue it is best to manage it as though it is(these are the Paed's words not mine!!!)> > > > > > > > When he was born he had positive swabs for group B Strep and was in SCBU and given intravenous antibiotics. He has ahd pneumonia and recurrent tonsilitis. Blood tests have revealed a clotting disorder.> > > > > > > > Apart from TST can anyone suggest what might be going on and how my friend can help her son. She is desperate now as she has put in a complaint to the PCT and all help has been suspended following the complaint. Many times she has been labelled herself by the professionals.> > > > > > > > I have suggested that she contacts the Breakspear.> > > > > > > > Many thanks> > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > DISCLAIMER> > > > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.> > > >

February 2, 2011

sometimes nose bleeds in boys can link in with dentition.. and with pressure within the brain... I have heard of good results with cranial osteopathy for the nose bleeds.Is he clotting problem that it clots too fast or too slow... Tash used to have a slow clotting issue.. the doctors forced Vitamin K onto us.. though we did demand natural and not synthetic.. and they are now bored of pursuing this and she does not appear to bruise as easily as she used to... In fact this is one of the things that has changed since TST.

Low oxygenation would affect many of the things showing as symptoms.... Regrettably.. mainstream medicine is simply not designed to help in many conditions our children face.. and sometimes I now think..having fought too many battles, it is better to conserve the energy and use it to connect with the right therapy which is most likely not mainstream

Tracey

Need to look to correct whatever is found in the full blood tests - red/white/lymphocytes etc - about 50 markers

And try to get some Genova urine and stool tests done also to correct metabolic abnormalities in amino acid tests

Thats the first things

> To: Autism-Biomedical-Europe > From: m.kidson60@...

> Date: Wed, 2 Feb 2011 10:34:02 +0000> Subject: Re: Help for a friend please - any ideas?> > Last assessment BP was 116/80> > >

> > > >> > > > > > Is his blood pressure high?

> > > > > > > To: Autism-Biomedical-Europe > > > > From: m.kidson60@> > > > Date: Wed, 2 Feb 2011 09:12:50 +0000

> > > > Subject: Help for a friend please - any ideas?> > > > > > > > Dear All, I have a friend who is really struggling with her son. He is 9 years old with various diagnoses including mild ASD, DCD and hypermobility. She is getting no help from the NHS and I wonder of this is because they do not know what to do.

> > > > > > > > His biggest problems at the moment are migraines and heavy nose bleeds - these nose bleeds can happen several times a day & at night. His legs also swell up. He has been hospitalised with the severe nose bleeds and he can lose excessive amounts of blood which can consist of large clots. He had HSP and when he had the henoch schonlein purpura, he had it on his legs first then hands to elbows, then his genital area. A few weeks later it re appeared on his head and face. He was quite poorly with this and he suffered from temporary junior arthritis in mainly the knees and hands.

> > > > > > > > He has been put on Piztifen 1mg at night for the migraines and referred to a Clinical Psychologist as whilst this is not Chronic Fatigue it is best to manage it as though it is(these are the Paed's words not mine!!!)

> > > > > > > > When he was born he had positive swabs for group B Strep and was in SCBU and given intravenous antibiotics. He has ahd pneumonia and recurrent tonsilitis. Blood tests have revealed a clotting disorder.

> > > > > > > > Apart from TST can anyone suggest what might be going on and how my friend can help her son. She is desperate now as she has put in a complaint to the PCT and all help has been suspended following the complaint. Many times she has been labelled herself by the professionals.

> > > > > > > > I have suggested that she contacts the Breakspear.> > > > > > > > Many thanks> > > > > > > > > > > >

> > > > > > > > > > > > ------------------------------------> > > > > > > > DISCLAIMER> > > > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

> > > >

February 2, 2011

I have migraines as does my oldest boy both of us get them from food intolerances, no nose bleeds but very oddly my eyes bleed from time to time, when I say bleed I mean exactly like a nose bleed but from the eyes, no one can tell me why?