Re: , US testing

[Guest guest]

Abbie,Thank you for your suggestions. I haven't heard of the Metabolic Analysis but I'll look into it. Actually I haven't heard of allot of tests and they just do the very basics here and that is that. They have clearly told me that they believe there is nothing they can do for our son, he just has autism.So I really just want to make sure I do everything possible to find out information that may help my child whilst in the States.Thanks again,

xSubject: , US testingTo: Autism-Biomedical-Europe Date: Saturday, March 26, 2011, 9:06 PM

, in your shoes I'd do a Urine Amino Acids, a Metabolic Analysis Profile (both Metametrix) and some form of gut test, either a Comprehensive Diagnostic Stool Analysis with Parasitology x3 (i.e. three consecutive samples) from Genova or Metametrix, or the Metametrix GI Profile, which has the real advantage of needing only one sample. If the budget allowed, I'd also do allergy testing, an overall nutritional profile like a ONE by Genova and a fatty acid analysis. I think you're smart to do this while you're there. I like lab testing, too - I like to KNOW, rather than exhaust my poor brain guessing, where the problems lie. Each time I fork out for testing, there's an AHA! moment when the results come back which lets me be more targetted in what I'm doing and so give my son a boost.

Good luck and hope it goes well :-)Abbie

[Guest guest]

,most of these tests are available here though not through NHS routes. I would check the cost and turnaround time with Genova Diagnostics in the UK and compare this before you go unless you have a way of accessing free access to care in the US. If you are looking to access a range of assessments that are not available in the UK, this goes back to my original query about where you are going. There are clinics in LA, Austin and Florida, for example, that offer things not easily accessible in the UK, but you want to be sure you are looking into testing that might be useful for your child, does not have a potential downside (what are the possible risks and potential benefits), and does not hit a dead end because there is no-one in the UK who can help with what to do next given the

findings.Hope this helps.Ken Subject: , US testingTo: Autism-Biomedical-Europe Date: Saturday, March 26, 2011, 9:06 PM

, in your shoes I'd do a Urine Amino Acids, a Metabolic Analysis Profile (both Metametrix) and some form of gut test, either a Comprehensive Diagnostic Stool Analysis with Parasitology x3 (i.e. three consecutive samples) from Genova or Metametrix, or the Metametrix GI Profile, which has the real advantage of needing only one sample. If the budget allowed, I'd also do allergy testing, an overall nutritional profile like a ONE by Genova and a fatty acid analysis. I think you're smart to do this while you're there. I like lab testing, too - I like to KNOW, rather than exhaust my poor brain guessing, where the problems lie. Each time I fork out for testing, there's an AHA! moment when the results come back which lets me be more targetted in what I'm doing and so give my son a boost.

Good luck and hope it goes well :-)Abbie

[Guest guest]

Hi Ken,We live in Sweden and are travelling to Florida. The doctors here have done the absolute minimum with regards to testing so when you talk about a dead end, we've already hit it here in this country. There is no support here at all and there are only a few parents that do a bit of bio med, some 5 hours away in Stockholm and a couple here. So we are really on our own here. My husband travels non stop with his job so it's up to me to take care of everything. I've felt frustrated to say the least lately and have been going through a rough time with our son who perpetually goes through problems with his disbyosis. He is gfcfsf and no sugar but it only takes one tiny infraction to set him

back. We have consulted 2 DANs. One in Norway and one in Florida and they were supposed to work together. That didn't go well, blood samples that were supposed to go to the states were not sent and the doctors didn't agree on the same treatment for dysbiosis. It was a nightmare.We are seeing good results with chelation. As soon as we start a round we see a difference in our son. This weekend was a good example, my son started babbling little words soon after we started, we were able to take him shopping for an hour which is amazing, he helped me to unpack the dishwasher which he's never done before and I got some precious moments when he pulled me near to kiss me. Improvements are constantly interrupted by dysbiosis though and it's so disheartening as I try so hard to keep everything in

check.Tests that have been done in Sweden are chromosome, blood status, ALAT liver testing I believe, creatinine, B Lactate, thryroid, organic acids and amino acids. They have done a few stool tests when my sons stools are really foul and said they have found nothing. I asked them to test for clostridia but they said that's not a normal thing to test for so they won't do that. On our own we did do some allergy testing which showed an Ige allergy to milk, soy and hazelnuts. We did peptide testing before he was gluten free and it showed gluten peptides with opioid qualities to be too high. It also showed a peptide pyro GLU TRP GLY to be too high which they interpreted as a problem with a reduced amount of serotonin.Twice,

we've done testing with Laboratoire de Biologie Medicale, an autism panel, Oats, Neopterine, Porphyrins and Oxiditive stress. He is toxic, uroporphins slightly elevated, precoporphyrins elevated and coproporphyrins highly elevated. High oxiditive stress and high homocysteine also prevailed. Both DANs saw the testing and said to work on oxiditive stress, dysbiosis and lowering the homocysteine. Our DAN doesn't believe the low dose frequent chelation is enough and that I should dose more ALA however agreed to support me in what ever capacity when I was firm on this.I take my hat off to other parents who are incredible at researching and handling their child's treatments. There are so many super mums, even single super mums who are doing an amazing job. I feel isolated here and have to reach out when I

need help and like I've said it's just so dam frustrating when I know I can't even ask the doctors here for a stool sample test if I need it. That's why I was thinking out loud and asking the group if there were any suggestions for testing that may help me find out something more about my son in the states. I apologise for writing so much. As I said it's been tough lately.Thanks for the ear, Subject: , US testingTo: Autism-Biomedical-Europe Date: Saturday, March 26, 2011, 9:06 PM

, in your shoes I'd do a Urine Amino Acids, a Metabolic Analysis Profile (both Metametrix) and some form of gut test, either a Comprehensive Diagnostic Stool Analysis with Parasitology x3 (i.e. three consecutive samples) from Genova or Metametrix, or the Metametrix GI Profile, which has the real advantage of needing only one sample. If the budget allowed, I'd also do allergy testing, an overall nutritional profile like a ONE by Genova and a fatty acid analysis. I think you're smart to do this while you're there. I like lab testing, too - I like to KNOW, rather than exhaust my poor brain guessing, where the problems lie. Each time I fork out for testing, there's an AHA! moment when the results come back which lets me be more targetted in what I'm doing and so give my son a boost.

Good luck and hope it goes well :-)Abbie

[Guest guest]

Dear ,

I'm new to this board (and indeed to the whole biomedical thing) and I know

you've had some pretty good, specific suggestions on testing to undertake whilst

in the States. I just wanted to ask whether you'd considered any other dietary

interventions apart from GFCFSF?

We have been doing the SCD (Specific Carbohydrate Diet) with our 4.5 year old

son for the last 8 months and before that he was GFCFSF for about a year with

some good gains but nothing like what we've seen since doing SCD. We have seen

HUGE improvements in language, social interaction, flexibility and he is

generally a completely different child from when we started even though we've

changed nothing else apart from adding a bit of Cod Liver oil to his diet. I

know people with dysbiosis have often used this or the GAPS (Gut and Psychology

Syndrome) diet and I know that on the other forums I use there are lots of

people who have seen real improvements with dietary changes.

I appreciate it's overwhelming to consider more changes to diet with everything

else that's going on and it does sound as if you're having a really hard time

with very little support over there. I mention it though as it's something that

can be done very much 'on your own' and there are really good internet support

groups / books for advice so I thought it might be something worth considering

if you're finding it hard to get other support in Sweden?

Good luck with whatever direction your biomed journey takes you in....

Best wishes,

Lorna

>

> Hi Ken,We live in Sweden and are travelling to Florida. The doctors here have

done the absolute minimum with regards to testing so when you talk about a dead

end, we've already hit it here in this country. There is no support here at all

and there are only a few parents that do a bit of bio med, some 5 hours away in

Stockholm and a couple here. So we are really on our own here. My husband

travels non stop with his job so it's up to me to take care of everything. I've

felt frustrated to say the least lately and have been going through a rough time

with our son who perpetually goes through problems with his disbyosis. He is

gfcfsf and no sugar but it only takes one tiny infraction to set him back.  We

have consulted 2 DANs. One in Norway and one in Florida and they were supposed

to work together. That didn't go well, blood samples that were supposed to go to

the states were not sent and the doctors didn't agree on the same treatment for

dysbiosis. It was

> a nightmare.We are seeing good results with chelation. As soon as we start a

round we see a difference in our son. This weekend was a good example, my son

started babbling little words soon after we started, we were able to take him

shopping for an hour which is amazing, he helped me to unpack the dishwasher

which he's never done before and I got some precious moments when he pulled me

near to kiss me. Improvements are constantly interrupted by dysbiosis though

and it's so disheartening as I try so hard to keep everything in check.Tests

that have been done in Sweden are chromosome, blood status, ALAT liver testing I

believe, creatinine, B Lactate, thryroid, organic acids and amino acids.  They

have done a few stool tests when my sons stools are really foul and said they

have found nothing. I asked them to test for clostridia but they said that's not

a normal thing to test for so they won't do that. On our own we did do some

allergy testing which

> showed an Ige allergy to milk, soy and hazelnuts. We did peptide testing

before he was gluten free and it showed gluten peptides with opioid qualities

to be too high. It also showed a peptide pyro GLU TRP GLY to be too high which

they interpreted as a problem with a reduced amount of serotonin.Twice, we've

done testing with Laboratoire de Biologie Medicale, an autism panel, Oats,

Neopterine, Porphyrins and Oxiditive stress. He is toxic, uroporphins slightly

elevated, precoporphyrins elevated and coproporphyrins highly elevated. High

oxiditive stress and high homocysteine also prevailed. Both DANs saw the

testing and said to work on oxiditive stress, dysbiosis and lowering the

homocysteine. Our DAN doesn't believe the low dose frequent chelation is enough

and that I should dose more ALA however agreed to support me in what ever

capacity when I was firm on this.I take my hat off to other parents who

are incredible at researching and handling their

> child's treatments. There are so many super mums, even single super mums who

are doing an amazing job. I feel isolated here and have to reach out when I need

help and like I've said it's just so dam frustrating when I know I can't even

ask the doctors here for a stool sample test if I need it. That's why I was

thinking out loud and asking the group if there were any suggestions for testing

that may help me find out something more about my son in the states.  I

apologise for writing so much. As I said it's been tough lately.Thanks for the

ear, 

>

>

>

>

[Guest guest]

Hi ,sorry I am pretty busy today so have just put in some annotations on your e-mail.let me known if you want to follow up any of it.Ken

Hi Ken,

We live in Sweden and are

travelling to Florida.

The doctors here have done the

absolute minimum with regards to testing so when you talk about a dead end, we've already

hit it here in this country. There is no support here at all and there are only a few parents

that do a bit of bio med, some 5 hours away in Stockholm and a couple here. So we are really on

our own here. My husband travels non stop with his job so it's up to me to take care of

everything. I've felt frustrated to say the least lately and have been

going through a rough time with

our son who perpetually goes through problems with his disbyosis. He is gfcfsf and no

sugar but it only takes one tiny infraction to set him back. (If CFGF, is he taking

galactose supplementaton/a combined supplement like SuperNuThera to compensate? – if

not do his regressions coincide with physical signs of DPP-IV issues like

reddening of his

ears?)

We have consulted 2 DANs. One in

Norway and one in Florida (was this Jeff

Bradstreet?) and they were supposed to work together.

That didn't go well, blood samples that were supposed to go

to the states were not sent and

the doctors didn't agree on the same treatment for dysbiosis. It was a nightmare.

We are seeing good results with

chelation. As soon as we start a round we see a difference in our son. This weekend was a good

example, my son started babbling little words soon after we started,

we were able to take him

shopping for an hour which is amazing, he helped me to unpack the dishwasher which he's never done

before and I got some precious moments when he pulled me near to kiss me. Improvements

are constantly interrupted by dysbiosis though and it's so disheartening as I try so

hard to keep everything in check.

Tests that have been done in

Sweden are chromosome, blood status, ALAT liver testing I believe, creatinine, B Lactate, thryroid,

organic acids and amino acids. (Did these tests

show anything?) They have done a few stool tests

when my sons stools are really foul and said they have found nothing. I asked them to test

for clostridia but they said that's not a normal thing to test for so they won't do that.

On our own we did do some

allergy testing which showed an Ige allergy to milk, soy and hazelnuts. We did peptide testing before he

was gluten free and it showed gluten peptides with opioid qualities

to be too high. (Sunderland / Reichelt?) It also showed a

peptide pyro GLU TRP GLY to be too high which they interpreted as a

problem with a reduced amount of serotonin. (does/did

he have

tiptoe-walking /

low tryptophan levels?)

Twice, we've done testing with

Laboratoire de Biologie Medicale, an autism panel, Oats, Neopterine, Porphyrins and Oxiditive stress.

He is toxic, uroporphins slightly elevated, precoporphyrins elevated

and coproporphyrins highly

elevated. High oxiditive stress and high homocysteine also prevailed. (this suggests

possible bioaccumulation issues, has there been any provocation testing, has

he been tested for

hyperoxaluria?)

Both DANs saw the testing and said

to work on oxiditive stress, dysbiosis and lowering the homocysteine. Our DAN doesn't

believe the low dose frequent chelation is enough and that I should

dose more ALA however agreed to

support me in what ever capacity when I was firm on this. I take my hat off to other

parents who are incredible at researching and handling their

child's treatments.

There are so many super mums,

even single super mums who are doing an amazing job. I feel isolated here and have to reach out when

I need help and like I've said it's just so dam frustrating when I know

I can't even ask the doctors

here for a stool sample test if I need it. That's why I was thinking out loud and asking the group if there

were any suggestions for testing that may help me find out something

more about my son in the states.

I apologise for writing so much.

As I said it's been tough lately.

Thanks for the ear,

Subject: , US testingTo: Autism-Biomedical-Europe Date: Saturday, March 26, 2011, 9:06 PM

, in your shoes I'd do a Urine Amino Acids, a Metabolic Analysis Profile (both Metametrix) and some form of gut test, either a Comprehensive Diagnostic Stool Analysis with Parasitology x3 (i.e. three consecutive samples) from Genova or Metametrix, or the Metametrix GI Profile, which has the real advantage of needing only one sample. If the budget allowed, I'd also do allergy testing, an overall nutritional profile like a ONE by Genova and a fatty acid analysis. I think you're smart to do this while you're there. I like lab testing, too - I like to KNOW, rather than exhaust my poor brain guessing, where the problems lie. Each time I fork out for testing, there's an AHA! moment when the results come back which lets me be more targetted in what I'm doing and so give my son a boost.

Good luck and hope it goes well :-)Abbie

[Guest guest]

Hi ,the red ears can be a sign of problems with phenol degradation. This is why galactose deficiency can cause an issue because it is a cofactor and depletion interferes with the functioning of the DPP-IV pathway.low tryptophan can be linked to tiptoe walking and is quite often reported with experimental tryptophan depletion.Serotonin is derived from dietary tryptophan so low tryptophan would lead to low serotonin as a matter of course. If his was the source, tryptophan supplementation could sort this problem. Does he have any sleep issues - serotronin is metabolised to give melatonin which is important in the sleep-wake cycle.The points about provocation testing and hyperoxaluria were separate. There is a test for hyperoxaluria offered by Bill Shaw's lab. The

porphyrin issues could be leading to heavy meta buildup and this would normally be checked by provocation testing - urinary levels pre and post a compound with normal comprison reference values to see whether he is retaining.Hope this helps,Ken Subject: , US testingTo: Autism-Biomedical-Europe Date: Saturday, March 26, 2011, 9:06 PM

, in your shoes I'd do a Urine Amino Acids, a Metabolic Analysis Profile (both Metametrix) and some form of gut test, either a Comprehensive Diagnostic Stool Analysis with Parasitology x3 (i.e. three consecutive samples) from Genova or Metametrix, or the Metametrix GI Profile, which has the real advantage of needing only one sample. If the budget allowed, I'd also do allergy testing, an overall nutritional profile like a ONE by Genova and a fatty acid analysis. I think you're smart to do this while you're there. I like lab testing, too - I like to KNOW, rather than exhaust my poor brain guessing, where the problems lie. Each time I fork out for testing, there's an AHA! moment when the results come back which lets me be more targetted in what I'm doing and so give my son a boost.

Good luck and hope it goes well :-)Abbie