Help needed please.

[Guest guest]

We are very new to this and feel a little overwhelmed with the

information we have and what to do with it. We just received

porphirins urinary test results for our son, every indicator is

elevated, especially mercury, and we need some help knowing what it

all means. The results are: UP 22; 7cxP 4.7; 6cxP 10; 5cxP 7.1; PrCP

41; CP 344. Ratios: PrCP/UP 1.85; PrCP/CP 12; CP/UP 15.5.

Now a short history.

My son is 3 ½ and has a speech delay – the speech therapist gave us

her assessment after working with him in a small group, once a week,

for the last six weeks. We are in the UK. We were worried that he

might have been on the autistic spectrum because of a number of

characteristics he exhibited: horrible tantrums, ignoring/oblivious

to his name being called, speech delay (until the past summer holiday,

he had no more than 50 words), poor / inappropriate social

interaction. His behaviour has improved alongside the rapid

improvement in his speech development. Now we feel he is quite a

happy young boy, not that he wasn't before, but he shows his happiness

even more readily now. He plays nicely with his small sister, who is

two years younger; he looks after her and consoles her with cuddles

when she is upset, or he brings her a toy or something nice to eat; he

has started singing along with music getting some of the words correct

in either Polish or English; he draws pictures and interacts with us

by asking us to draw and names shapes, colours and objects; he has

started answering yes/no questions and saying whether or not he wants

something; he started dressing himself and does it quickly when he

sees a good incentive; he has lots of imaginary play; he is cautious

by the road.

He still has some issues: speech delay; some sensory issues – he puts

lights very close to his eyes (Christmas Tree Lights) and holds them

there for a short time, he doesn't like socks and only wears

seam-free ones, not happy having wet hair / head when washing in the

bath; can get over-enthusiastic when in a very energetic environment –

lots of kids, lots of noise, lots of running about; he wants to play

with other kids but does not know how to go about this, so he runs and

expects to be chased, or vice versa;

These concerns might be speech related, or the speech might be related

to something else. Jakub was born in Poland and had a urinary tract

infection as a result of the poor conditions of the birth. He had

severe jaundice as a result of the infection. He was put on IV

antibiotics and received phototherapy. He was given two vaccines two

days after birth: TB and Hep B (EUVAX-, which contained mercury, and

was recalled by the WHO a few months after his injections. He is

sensitive to cow's milk, sugar and possibly gluten. He had a lot of

bloating and had a lot of diarrhoea but this decreased after oral

probiotics.

We are about 98 % sure he doesn't have autism. Two percent seems a

pretty great number though. Watching our daughter, who was never

vaccinated, it really makes us aware of the challenges that Jakub has

just now; she is a different person, and all children are different,

but she shows ability with communication that Jakub has not yet

achieved.

Do you think we should do bio-medical treatment since the results are

positive for mercury, arsenic and lead even though he only has a

diagnosis of speech delay from the speech therapist?

We are in Edinburgh, can you recommend to contact anyone for next

steps? Should we tell his school and our GP about our plans if we go

for bio-medical treatment? How might they react? What can we do at

home to prepare for this treatment other than what is recommended on

the Generation Rescue website? Do you have any experiencing

requesting an absence of gluten or dairy with school provided meals?

We started reading about chelation and wonder if you would recommend

DMSA or DMPS?

As you can imagine, we are really, scared, stressed and confused.

Thank you in advance for reading and any advice you can give us.

[Guest guest]

Hi There

I dont live so far from you. I am in Aberdeenshire. There is a clinic

in Edinburgh called the Autism Treatment Trust and they have a

practitioner called Lorene Amet and also a Doctor who I believe may

also be Polish, Dr Magdalena Cubala so that would be a good first

step for you. Did you do your Porphyrin testing thru a Clinic

already? They would be able to advise you on biomedical interventions

and whether they would be suitable for your child. Muscroft is a

Nutritionist who also works mostly with ASD kids. There is also the

Breakspear in Hemel Hempstead and Jon Tommey outside London.

From everything you have said in your email, your little boy sounds

lovely and has lots of very positive interactions which is great. It

sounds as if some dietary interventions may be useful given the

Allergy/Intolerance reactions you state already. I cant recall if you

say you are avoiding these things already. Another point is that, in

my humble opinion, dietary modification and biomedical interventions

are good for everyone and not just those on the autistic spectrum. I

dont think we stress that enough. We often talk about treating autism

but really treating everybody would be great.

Its such a hard time where you are now I so remember the feelings

when I wasnt sure about my own child. My advice would be keep reading

up on this stuff and if you can consult with someone like Lorene or

Magdalena. The Caudwell Foundation often provides financial support

for families doing biomed providing your income is not beyond a

certain amount so that might be worth exploring.

Good Luck with it all and please contact me offlist if you fancy a

chat. Everyone on this list will help you as much as they can too.

Luv Caroline

x

[Guest guest]

Hi There

I dont live so far from you. I am in Aberdeenshire. There is a clinic

in Edinburgh called the Autism Treatment Trust and they have a

practitioner called Lorene Amet and also a Doctor who I believe may

also be Polish, Dr Magdalena Cubala so that would be a good first

step for you. Did you do your Porphyrin testing thru a Clinic

already? They would be able to advise you on biomedical interventions

and whether they would be suitable for your child. Muscroft is a

Nutritionist who also works mostly with ASD kids. There is also the

Breakspear in Hemel Hempstead and Jon Tommey outside London.

From everything you have said in your email, your little boy sounds

lovely and has lots of very positive interactions which is great. It

sounds as if some dietary interventions may be useful given the

Allergy/Intolerance reactions you state already. I cant recall if you

say you are avoiding these things already. Another point is that, in

my humble opinion, dietary modification and biomedical interventions

are good for everyone and not just those on the autistic spectrum. I

dont think we stress that enough. We often talk about treating autism

but really treating everybody would be great.

Its such a hard time where you are now I so remember the feelings

when I wasnt sure about my own child. My advice would be keep reading

up on this stuff and if you can consult with someone like Lorene or

Magdalena. The Caudwell Foundation often provides financial support

for families doing biomed providing your income is not beyond a

certain amount so that might be worth exploring.

Good Luck with it all and please contact me offlist if you fancy a

chat. Everyone on this list will help you as much as they can too.

Luv Caroline

x

[Guest guest]

Hi, just say I agree with everything Caroline said, worth seeing someone at Autism Treatment Trust asap.

Important thing to keep in mind is that official diagnosis of autism is completely irrelevant here, in my opinion. What you want to treat through diets and biomed are your son’s symptoms and everyday problems he has, no one treats autism diagnosis as such.

best of luck

Natasa

Hi There

I dont live so far from you. I am in Aberdeenshire. There is a clinic

in Edinburgh called the Autism Treatment Trust and they have a

practitioner called Lorene Amet and also a Doctor who I believe may

also be Polish, Dr Magdalena Cubala so that would be a good first

step for you. Did you do your Porphyrin testing thru a Clinic

already? They would be able to advise you on biomedical interventions

and whether they would be suitable for your child. Muscroft is a

Nutritionist who also works mostly with ASD kids. There is also the

Breakspear in Hemel Hempstead and Jon Tommey outside London.

From everything you have said in your email, your little boy sounds

lovely and has lots of very positive interactions which is great. It

sounds as if some dietary interventions may be useful given the

Allergy/Intolerance reactions you state already. I cant recall if you

say you are avoiding these things already. Another point is that, in

my humble opinion, dietary modification and biomedical interventions

are good for everyone and not just those on the autistic spectrum. I

dont think we stress that enough. We often talk about treating autism

but really treating everybody would be great.

Its such a hard time where you are now I so remember the feelings

when I wasnt sure about my own child. My advice would be keep reading

up on this stuff and if you can consult with someone like Lorene or

Magdalena. The Caudwell Foundation often provides financial support

for families doing biomed providing your income is not beyond a

certain amount so that might be worth exploring.

Good Luck with it all and please contact me offlist if you fancy a

chat. Everyone on this list will help you as much as they can too.

Luv Caroline

x

[Guest guest]

hej kjaworowska

ja tez jestem polka i moj synek jest na autystycznym spektrum, christopher ma 3 latka i z tego co ty piszesz to wyglada na to ze prawdopodobnie ma candide albicans w jelitach szczegulnie gdy robi bardzo duzo luznych kup, my tez to mamy i robilismy badania na posiew w polsce, niestety tu w angli badan takich ci niezrobia a gdy zrobia to sa niezrobione poprawnie lub niesa zbyt czule ilekarz niezaleci badan jebynie co mozesz zrobic to robic badania w http://www.genovadiagnostics.com/ jesli chodzi o lekarzy to najlepiej jak bys sie skontaktowala z DAN doktorem ktory leczy nasze dzieci to jedyna osoba niestety w tym kraju co bedzie mogla leczyc skutecznie twojego synka NHS niestety nieuwaza tak jak w polsce zeby najpierw sprawdzic cialo czy jest zdrowa tu to wszystko jest zaliczane na choroby lub zaburzenia psychiczne i do psychiatry. co do GP to lepiej niemowic ze masz zamiar leczyc

dziecko przez biomeb oni tu tego nieuznaja , a watpie ze chcesz przyciaglac uwage do siebie w razie czego to mozesz zawsze powiedziec ze leczysz synka w polsce u prywatnego lekarza i tyle na ten temat jesli wolisz polskego DAN doktora to tu jest adres http://autismtrust.org.uk/index.html

lub jej polska strona http://www.drcubala.com/intro . Czy zastanawialas sie nad zmiana diety ? czy dajesz synkowi jakies witaminy lub fish oil omega 3? zacznij powoli bo jest strasznie duzo a za kazdym razem jak dasz synkowi cos nowego to mmusisz go obserwowac jakie ma reakcje dobre czy zle. czy zauwazylas czy ma czerwone uszy lub policzku po zjedzeniu warzyw lub owocow ?

niestety niemasz diagnozy ASD bo mys mogla dostac pomocy od

http://www.caudwellchildren.com/ ale awsze mozesz sprawdzic, oni sa rewelacyjni.

jesli uawasz ze synek jest na ASD to musisz walczyc z NHS to wtedy dostanie pomoc 1 na 1 od nauczycieli i pomoc finansowa od panstwa.

powodzenia , odezwij sie jesli potrzebujesz wiecj pomocy

teresa z rodzinka

To: Autism-Biomedical-Europe Sent: Saturday, 27 December, 2008 19:58:07Subject: Help needed please.

We are very new to this and feel a little overwhelmed with theinformation we have and what to do with it. We just receivedporphirins urinary test results for our son, every indicator iselevated, especially mercury, and we need some help knowing what itall means. The results are: UP 22; 7cxP 4.7; 6cxP 10; 5cxP 7.1; PrCP41; CP 344. Ratios: PrCP/UP 1.85; PrCP/CP 12; CP/UP 15.5. Now a short history.My son is 3 ½ and has a speech delay – the speech therapist gave usher assessment after working with him in a small group, once a week,for the last six weeks. We are in the UK. We were worried that hemight have been on the autistic spectrum because of a number ofcharacteristics he exhibited: horrible tantrums, ignoring/obliviousto his name being called, speech delay (until the past summer holiday,he had no more than 50 words), poor / inappropriate socialinteraction. His behaviour has improved alongside

the rapidimprovement in his speech development. Now we feel he is quite ahappy young boy, not that he wasn't before, but he shows his happinesseven more readily now. He plays nicely with his small sister, who istwo years younger; he looks after her and consoles her with cuddleswhen she is upset, or he brings her a toy or something nice to eat; hehas started singing along with music getting some of the words correctin either Polish or English; he draws pictures and interacts with usby asking us to draw and names shapes, colours and objects; he hasstarted answering yes/no questions and saying whether or not he wantssomething; he started dressing himself and does it quickly when hesees a good incentive; he has lots of imaginary play; he is cautiousby the road.He still has some issues: speech delay; some sensory issues – he putslights very close to his eyes (Christmas Tree Lights) and holds

themthere for a short time, he doesn't like socks and only wearsseam-free ones, not happy having wet hair / head when washing in thebath; can get over-enthusiastic when in a very energetic environment –lots of kids, lots of noise, lots of running about; he wants to playwith other kids but does not know how to go about this, so he runs andexpects to be chased, or vice versa; These concerns might be speech related, or the speech might be relatedto something else. Jakub was born in Poland and had a urinary tractinfection as a result of the poor conditions of the birth. He hadsevere jaundice as a result of the infection. He was put on IVantibiotics and received phototherapy. He was given two vaccines twodays after birth: TB and Hep B (EUVAX-, which contained mercury, andwas recalled by the WHO a few months after his injections. He issensitive to cow's milk, sugar and possibly gluten. He had a lot

ofbloating and had a lot of diarrhoea but this decreased after oralprobiotics. We are about 98 % sure he doesn't have autism. Two percent seems apretty great number though. Watching our daughter, who was nevervaccinated, it really makes us aware of the challenges that Jakub hasjust now; she is a different person, and all children are different,but she shows ability with communication that Jakub has not yetachieved. Do you think we should do bio-medical treatment since the results arepositive for mercury, arsenic and lead even though he only has adiagnosis of speech delay from the speech therapist? We are in Edinburgh, can you recommend to contact anyone for nextsteps? Should we tell his school and our GP about our plans if we gofor bio-medical treatment? How might they react? What can we do athome to prepare for this treatment other than what is recommended onthe Generation Rescue website?

Do you have any experiencingrequesting an absence of gluten or dairy with school provided meals? We started reading about chelation and wonder if you would recommendDMSA or DMPS?As you can imagine, we are really, scared, stressed and confused. Thank you in advance for reading and any advice you can give us.

[Guest guest]

hej kjaworowska

ja tez jestem polka i moj synek jest na autystycznym spektrum, christopher ma 3 latka i z tego co ty piszesz to wyglada na to ze prawdopodobnie ma candide albicans w jelitach szczegulnie gdy robi bardzo duzo luznych kup, my tez to mamy i robilismy badania na posiew w polsce, niestety tu w angli badan takich ci niezrobia a gdy zrobia to sa niezrobione poprawnie lub niesa zbyt czule ilekarz niezaleci badan jebynie co mozesz zrobic to robic badania w http://www.genovadiagnostics.com/ jesli chodzi o lekarzy to najlepiej jak bys sie skontaktowala z DAN doktorem ktory leczy nasze dzieci to jedyna osoba niestety w tym kraju co bedzie mogla leczyc skutecznie twojego synka NHS niestety nieuwaza tak jak w polsce zeby najpierw sprawdzic cialo czy jest zdrowa tu to wszystko jest zaliczane na choroby lub zaburzenia psychiczne i do psychiatry. co do GP to lepiej niemowic ze masz zamiar leczyc

dziecko przez biomeb oni tu tego nieuznaja , a watpie ze chcesz przyciaglac uwage do siebie w razie czego to mozesz zawsze powiedziec ze leczysz synka w polsce u prywatnego lekarza i tyle na ten temat jesli wolisz polskego DAN doktora to tu jest adres http://autismtrust.org.uk/index.html

lub jej polska strona http://www.drcubala.com/intro . Czy zastanawialas sie nad zmiana diety ? czy dajesz synkowi jakies witaminy lub fish oil omega 3? zacznij powoli bo jest strasznie duzo a za kazdym razem jak dasz synkowi cos nowego to mmusisz go obserwowac jakie ma reakcje dobre czy zle. czy zauwazylas czy ma czerwone uszy lub policzku po zjedzeniu warzyw lub owocow ?

niestety niemasz diagnozy ASD bo mys mogla dostac pomocy od

http://www.caudwellchildren.com/ ale awsze mozesz sprawdzic, oni sa rewelacyjni.

jesli uawasz ze synek jest na ASD to musisz walczyc z NHS to wtedy dostanie pomoc 1 na 1 od nauczycieli i pomoc finansowa od panstwa.

powodzenia , odezwij sie jesli potrzebujesz wiecj pomocy

teresa z rodzinka

To: Autism-Biomedical-Europe Sent: Saturday, 27 December, 2008 19:58:07Subject: Help needed please.

We are very new to this and feel a little overwhelmed with theinformation we have and what to do with it. We just receivedporphirins urinary test results for our son, every indicator iselevated, especially mercury, and we need some help knowing what itall means. The results are: UP 22; 7cxP 4.7; 6cxP 10; 5cxP 7.1; PrCP41; CP 344. Ratios: PrCP/UP 1.85; PrCP/CP 12; CP/UP 15.5. Now a short history.My son is 3 ½ and has a speech delay – the speech therapist gave usher assessment after working with him in a small group, once a week,for the last six weeks. We are in the UK. We were worried that hemight have been on the autistic spectrum because of a number ofcharacteristics he exhibited: horrible tantrums, ignoring/obliviousto his name being called, speech delay (until the past summer holiday,he had no more than 50 words), poor / inappropriate socialinteraction. His behaviour has improved alongside

the rapidimprovement in his speech development. Now we feel he is quite ahappy young boy, not that he wasn't before, but he shows his happinesseven more readily now. He plays nicely with his small sister, who istwo years younger; he looks after her and consoles her with cuddleswhen she is upset, or he brings her a toy or something nice to eat; hehas started singing along with music getting some of the words correctin either Polish or English; he draws pictures and interacts with usby asking us to draw and names shapes, colours and objects; he hasstarted answering yes/no questions and saying whether or not he wantssomething; he started dressing himself and does it quickly when hesees a good incentive; he has lots of imaginary play; he is cautiousby the road.He still has some issues: speech delay; some sensory issues – he putslights very close to his eyes (Christmas Tree Lights) and holds

themthere for a short time, he doesn't like socks and only wearsseam-free ones, not happy having wet hair / head when washing in thebath; can get over-enthusiastic when in a very energetic environment –lots of kids, lots of noise, lots of running about; he wants to playwith other kids but does not know how to go about this, so he runs andexpects to be chased, or vice versa; These concerns might be speech related, or the speech might be relatedto something else. Jakub was born in Poland and had a urinary tractinfection as a result of the poor conditions of the birth. He hadsevere jaundice as a result of the infection. He was put on IVantibiotics and received phototherapy. He was given two vaccines twodays after birth: TB and Hep B (EUVAX-, which contained mercury, andwas recalled by the WHO a few months after his injections. He issensitive to cow's milk, sugar and possibly gluten. He had a lot

ofbloating and had a lot of diarrhoea but this decreased after oralprobiotics. We are about 98 % sure he doesn't have autism. Two percent seems apretty great number though. Watching our daughter, who was nevervaccinated, it really makes us aware of the challenges that Jakub hasjust now; she is a different person, and all children are different,but she shows ability with communication that Jakub has not yetachieved. Do you think we should do bio-medical treatment since the results arepositive for mercury, arsenic and lead even though he only has adiagnosis of speech delay from the speech therapist? We are in Edinburgh, can you recommend to contact anyone for nextsteps? Should we tell his school and our GP about our plans if we gofor bio-medical treatment? How might they react? What can we do athome to prepare for this treatment other than what is recommended onthe Generation Rescue website?

Do you have any experiencingrequesting an absence of gluten or dairy with school provided meals? We started reading about chelation and wonder if you would recommendDMSA or DMPS?As you can imagine, we are really, scared, stressed and confused. Thank you in advance for reading and any advice you can give us.