Re: NHS referrals - metabolics, brain scan, eeg.

[Guest guest]

Hi Suzannah,there is a long list of rate conditions worth looking into. Not having seen your results I have no idea whether the paed has a notion of what might be present or is unsure so referring on for more expert opinion.This is part of a table from a paper I am finishing off on biological factors. The more obvious IOMs are:

Adenylosuccinate lyase deficiency

Dihydropyrimidine dehydrogenase

deficiency

Guanidinoacetate methyltransferase

deficiency

L-2-hydroxyglutaric aciduria

2-methylbutyryl-CoA dehydrogenase

deficiency

Methylmalonic

acidaemia

Phenylketonuria

-Lemli-Opitz syndrome

Succinic

semialdehyde dehydrogenase deficiency

none is particularly common - MMA would lead you to consider methyl B12, SLOS to thinking about cholesterol supplementation ..... .Presumably from the tests you have had done there has been some idea about possible pathogenesis.Hope his helps,KenSubject: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Friday, 25 November, 2011, 17:11

Hi,

We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

1) metabolic team;

2) brain scan;

3) eeg;

4) forward all results to GOSH and refer him there.

I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

Does anyone know what they might be looking for?

Thanks in advance for any comments,

nah

[Guest guest]

Hi Suzannah,there is a long list of rate conditions worth looking into. Not having seen your results I have no idea whether the paed has a notion of what might be present or is unsure so referring on for more expert opinion.This is part of a table from a paper I am finishing off on biological factors. The more obvious IOMs are:

Adenylosuccinate lyase deficiency

Dihydropyrimidine dehydrogenase

deficiency

Guanidinoacetate methyltransferase

deficiency

L-2-hydroxyglutaric aciduria

2-methylbutyryl-CoA dehydrogenase

deficiency

Methylmalonic

acidaemia

Phenylketonuria

-Lemli-Opitz syndrome

Succinic

semialdehyde dehydrogenase deficiency

none is particularly common - MMA would lead you to consider methyl B12, SLOS to thinking about cholesterol supplementation ..... .Presumably from the tests you have had done there has been some idea about possible pathogenesis.Hope his helps,KenSubject: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Friday, 25 November, 2011, 17:11

Hi,

We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

1) metabolic team;

2) brain scan;

3) eeg;

4) forward all results to GOSH and refer him there.

I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

Does anyone know what they might be looking for?

Thanks in advance for any comments,

nah

[Guest guest]

Hi Suzannah,there is a long list of rate conditions worth looking into. Not having seen your results I have no idea whether the paed has a notion of what might be present or is unsure so referring on for more expert opinion.This is part of a table from a paper I am finishing off on biological factors. The more obvious IOMs are:

Adenylosuccinate lyase deficiency

Dihydropyrimidine dehydrogenase

deficiency

Guanidinoacetate methyltransferase

deficiency

L-2-hydroxyglutaric aciduria

2-methylbutyryl-CoA dehydrogenase

deficiency

Methylmalonic

acidaemia

Phenylketonuria

-Lemli-Opitz syndrome

Succinic

semialdehyde dehydrogenase deficiency

none is particularly common - MMA would lead you to consider methyl B12, SLOS to thinking about cholesterol supplementation ..... .Presumably from the tests you have had done there has been some idea about possible pathogenesis.Hope his helps,KenSubject: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Friday, 25 November, 2011, 17:11

Hi,

We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

1) metabolic team;

2) brain scan;

3) eeg;

4) forward all results to GOSH and refer him there.

I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

Does anyone know what they might be looking for?

Thanks in advance for any comments,

nah

[Guest guest]

nah, I realise this might be very difficult but it might be best to try and

wait and not to speculate because, as Ken said, you don't know whether the paed

actually suspects something or is just checking there's nothing wrong. Here's

hoping there's nothing wrong and that the referral gets acted on quickly.

Margaret

>

> Hi,

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> 1) metabolic team;

> 2) brain scan;

> 3) eeg;

> 4) forward all results to GOSH and refer him there.

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

> Does anyone know what they might be looking for?

>

> Thanks in advance for any comments,

>

> nah

>

[Guest guest]

nah, I realise this might be very difficult but it might be best to try and

wait and not to speculate because, as Ken said, you don't know whether the paed

actually suspects something or is just checking there's nothing wrong. Here's

hoping there's nothing wrong and that the referral gets acted on quickly.

Margaret

>

> Hi,

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> 1) metabolic team;

> 2) brain scan;

> 3) eeg;

> 4) forward all results to GOSH and refer him there.

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

> Does anyone know what they might be looking for?

>

> Thanks in advance for any comments,

>

> nah

>

[Guest guest]

nah, I realise this might be very difficult but it might be best to try and

wait and not to speculate because, as Ken said, you don't know whether the paed

actually suspects something or is just checking there's nothing wrong. Here's

hoping there's nothing wrong and that the referral gets acted on quickly.

Margaret

>

> Hi,

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> 1) metabolic team;

> 2) brain scan;

> 3) eeg;

> 4) forward all results to GOSH and refer him there.

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

> Does anyone know what they might be looking for?

>

> Thanks in advance for any comments,

>

> nah

>

[Guest guest]

Hi nahMy son also regresses badly with any slight viral infection.  For him YASKO results suggest this is due to increase in ammonia which then puts a burden on BH4 to eliminate.  Viral infection also decreases BH4.

Charlie has genetic SNP's indicative of combined reasons for low BH4 but also a problem with nitric oxide synthase which acually removes ammonia - so in short he get increases  of ammonia and in addition cannot remove it effectively (it is actaully much more complicated than this and the increase in ammonia is due to excess sulphur groups, an enzymes block at converting BH2 to BH4).

Yesterday we had our 2nd appt with metabolics and although the consultant is very nice and listened to everything/looked at all our results he explained that urine results are not an accurate way of measurements and it needs to be bloods.  He did agree to check some of the amino acids in blood but only when the children next need a venous sample taking anyway - as there are none planned, by the time this happens we will have corrected the problem anyway.

I did not find he was deliberately un co-operative but for example he said that it was pointless taking blood ammonia in a well child.  I suggested that Charlie is not a well child but in metabolics they only seem to be bothered in presentations of medical emergencies.  I tried to explain that the urine ammonia was very significant as we are not just interested in what is in the body we also need to know what is been generated and eliminated as this puts stress on biochemical pathways.

Charlie has had urine organics and blood aminos done by metabolics last year and the results were that all was fine.  On our ONE tests all was not fine.  We now know Charlie is very low in cysteine and methionine. Their test did not test for cysteine and methionine showed 14 - problem was their reference range for methionine starts at 0.  However yesterday the consultant did say if methionine constantly stays low (which it is with both my kids) then that is a problem.

I now plan to write to him stressing that the bloods need to be done straight away and not to wait until they need another blood test.I think it boils down to the fact that they currently work within certain parameters of what they know about and at the moment they are ignorant to autism so son't know what patterns to look for. He admitted he was way out of depth when I explained YASKO resluts as we are not just looking at one problem.  Autism is multi factoral and currently NHS only deal with single cause disorders.

He stated he could not possibly to to suggest what the implications of our combination would be at which point I answered' the implications are a presentation of asd due to combination of serveral organic problems'.

I think you have done really well to get the referrals.  I think you should prepare well for the appts and make the most of them.  At this point I wouldn't be too concerned about what they are looking for as I think your Dr was just acting responsibly in referring on.

Please let us know how you get on.Alison R

 

Hi,

We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he " zones " in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

1) metabolic team;

2) brain scan;

3) eeg;

4) forward all results to GOSH and refer him there.

I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

Does anyone know what they might be looking for?

Thanks in advance for any comments,

nah

[Guest guest]

Hi nahMy son also regresses badly with any slight viral infection.  For him YASKO results suggest this is due to increase in ammonia which then puts a burden on BH4 to eliminate.  Viral infection also decreases BH4.

Charlie has genetic SNP's indicative of combined reasons for low BH4 but also a problem with nitric oxide synthase which acually removes ammonia - so in short he get increases  of ammonia and in addition cannot remove it effectively (it is actaully much more complicated than this and the increase in ammonia is due to excess sulphur groups, an enzymes block at converting BH2 to BH4).

Yesterday we had our 2nd appt with metabolics and although the consultant is very nice and listened to everything/looked at all our results he explained that urine results are not an accurate way of measurements and it needs to be bloods.  He did agree to check some of the amino acids in blood but only when the children next need a venous sample taking anyway - as there are none planned, by the time this happens we will have corrected the problem anyway.

I did not find he was deliberately un co-operative but for example he said that it was pointless taking blood ammonia in a well child.  I suggested that Charlie is not a well child but in metabolics they only seem to be bothered in presentations of medical emergencies.  I tried to explain that the urine ammonia was very significant as we are not just interested in what is in the body we also need to know what is been generated and eliminated as this puts stress on biochemical pathways.

Charlie has had urine organics and blood aminos done by metabolics last year and the results were that all was fine.  On our ONE tests all was not fine.  We now know Charlie is very low in cysteine and methionine. Their test did not test for cysteine and methionine showed 14 - problem was their reference range for methionine starts at 0.  However yesterday the consultant did say if methionine constantly stays low (which it is with both my kids) then that is a problem.

I now plan to write to him stressing that the bloods need to be done straight away and not to wait until they need another blood test.I think it boils down to the fact that they currently work within certain parameters of what they know about and at the moment they are ignorant to autism so son't know what patterns to look for. He admitted he was way out of depth when I explained YASKO resluts as we are not just looking at one problem.  Autism is multi factoral and currently NHS only deal with single cause disorders.

He stated he could not possibly to to suggest what the implications of our combination would be at which point I answered' the implications are a presentation of asd due to combination of serveral organic problems'.

I think you have done really well to get the referrals.  I think you should prepare well for the appts and make the most of them.  At this point I wouldn't be too concerned about what they are looking for as I think your Dr was just acting responsibly in referring on.

Please let us know how you get on.Alison R

 

Hi,

We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he " zones " in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

1) metabolic team;

2) brain scan;

3) eeg;

4) forward all results to GOSH and refer him there.

I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

Does anyone know what they might be looking for?

Thanks in advance for any comments,

nah

[Guest guest]

Thanks to all of you for your comments and advice. Thinking back, my feeling is

that she did not have anything in particular in mind. I could be wrong, of

course, but I also reassure myself that we've seen some modest gains lately.

And thank you Alison for sharing your experiences - it's really helpful. I will

definitely take on board being prepared for the appointment and making the most

of the referrals we've been given. Perhaps they can add something to what we've

already learnt about our son's condition over the last year or so.

And best of luck with getting your blood test done quickly.

Thank you all again - it really is reassuring. My immediate reaction was to

panic, and your responses will help me to react a bit more ?productively!

nah

>

> > **

> >

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

> > expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

> > (colds, gut) and didn't regain progress on recovery; he " zones " in and out;

> > that we've worked hard on him immune system to avoid illness (and

> > regressions), which is going well, and that we've had gains on

> > scd/antibiotics coinciding with gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

> > that she'd like to do some metabolic testing, at which point I showed her

> > his most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said

> > she'd like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I

> > pressed her for what she might be looking for - eeg for seizure activity -

> > we don't have seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

> >

> >

>

[Guest guest]

Thanks to all of you for your comments and advice. Thinking back, my feeling is

that she did not have anything in particular in mind. I could be wrong, of

course, but I also reassure myself that we've seen some modest gains lately.

And thank you Alison for sharing your experiences - it's really helpful. I will

definitely take on board being prepared for the appointment and making the most

of the referrals we've been given. Perhaps they can add something to what we've

already learnt about our son's condition over the last year or so.

And best of luck with getting your blood test done quickly.

Thank you all again - it really is reassuring. My immediate reaction was to

panic, and your responses will help me to react a bit more ?productively!

nah

>

> > **

> >

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

> > expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

> > (colds, gut) and didn't regain progress on recovery; he " zones " in and out;

> > that we've worked hard on him immune system to avoid illness (and

> > regressions), which is going well, and that we've had gains on

> > scd/antibiotics coinciding with gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

> > that she'd like to do some metabolic testing, at which point I showed her

> > his most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said

> > she'd like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I

> > pressed her for what she might be looking for - eeg for seizure activity -

> > we don't have seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

> >

> >

>

[Guest guest]

Yes I agree with what Alison and others have said, your doc is just

covering herself by trying to cover 'all' bases. For most/all mainstream

doctors (and this probably includes most of those you will be referred

to) autism is either 'genetic unexplainable/nothing wrong with them' or

'genetic metabolic'. As soon as she heard about your child's condition

changing with illnesses and treatments, in other words him not fitting

into 'genetic set in stone' category, it rang the 'metabolic' alarm bell

in her mind. Simply because there is nothing else she knows or can think

of in relation to autism ... (worth keeping this in mind when seeing

the specialists)

Natasa

> >

> > > **

> > >

> > >

> > > Hi,

> > >

> > > We saw the paed. yesterday (3rd visit ever) - I went in with v.

few

> > > expectations.

> > >

> > > We mentioned the following: he regressed several times when he got

ill

> > > (colds, gut) and didn't regain progress on recovery; he " zones " in

and out;

> > > that we've worked hard on him immune system to avoid illness (and

> > > regressions), which is going well, and that we've had gains on

> > > scd/antibiotics coinciding with gut recovery.

> > >

> > > She said she was concerned that this might be something metabolic

(!) and

> > > that she'd like to do some metabolic testing, at which point I

showed her

> > > his most recent H & B and OAT.

> > >

> > > She looked at them, asked to copy to fwd to metabollic team, then

said

> > > she'd like to make the follow referals:

> > > 1) metabolic team;

> > > 2) brain scan;

> > > 3) eeg;

> > > 4) forward all results to GOSH and refer him there.

> > >

> > > I think this is a result, but also terrified at the implications!

I

> > > pressed her for what she might be looking for - eeg for seizure

activity -

> > > we don't have seizures to my knowledge - other wise she couldn't

specify.

> > >

> > > Does anyone know what they might be looking for?

> > >

> > > Thanks in advance for any comments,

> > >

> > > nah

> > >

> > >

> > >

> >

>

[Guest guest]

Hi Alison,

Once again how nicely you explaned this complex ammonia issue in Yasko terms.I

wish I could make comments to nah but things are not clear for us at the

moment.My son is continuing having his seizures, now turned to be weekly,at the

same time,how strange pattern!

He has red flushes and norologist can't pay attention but I feel that it is

related with ammonia.I try to take all helpful steps to reduce this (Food

manipulations) not very effective.However his medication perhaps keeps his

ammonia high, I read it somewhere, medication makes an effect on ammonia but I

received some of the test results from GOSH,ammonia was low in blood!

The neurologist promised to talk to metabolic team at the hospital.Still waiting

to hear amino acids,bacteria and viruses...results from them.

My son's seizures have also association with viral issues as well, little red

spots on his chest but red flushes...links with ammonia in some articles.

What exactly are you paying more attention to keep ammonia low include

supplements?

I hope you get more clear picture than us nah but getting a referral to a

specialist team is good to eliminate some conditions which they are looking at.

All the best

nevin

>

> > **

> >

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

> > expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

> > (colds, gut) and didn't regain progress on recovery; he " zones " in and out;

> > that we've worked hard on him immune system to avoid illness (and

> > regressions), which is going well, and that we've had gains on

> > scd/antibiotics coinciding with gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

> > that she'd like to do some metabolic testing, at which point I showed her

> > his most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said

> > she'd like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I

> > pressed her for what she might be looking for - eeg for seizure activity -

> > we don't have seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

> >

> >

>

[Guest guest]

Hi NevinI'm sorry the seizures are continuing.  Can you associate the pattern with any other factors eg large protein meal on a certain day of week, swimming or do you think its a build up that the seizure then clears.

I know mainstream will only pay attention to blood ammonia and not urine.  Blood does not take into account any ammonia he is getting rid of and if this is draining other things - eg the ammonia could be draining BH4.  Could it be lack of BH4 thats causing the seizures ( due to ammonia) rather than the ammonia itself?

This may be totally wrong area but BH4 seems to be a big player in YASKO - it would also link with your test result showing increased levels of BH2.  I know its really difficult to keep challenging the NHS doctors - I find it draining.

Our metabolics consultant wasn't even aware that BH4 is used to eliminate ammonia.  he just kept saying that his PKU parients don't appear to have urea cycle problems - they just don't get it!

Did yo manage to ask any more about the high levels of BH2.  Bh2 converts to BH4 and BH4 is needed for elimination of ammonia.  Have you done any tests recently through Amy Yasko - if you do you could mention the results you were given.

Have you researched your sons types of seizure in relation to BH4.  Charlie has never had seizures often but he did use to cycle with the other ammonia associated behaviours.  He used to eat quite well for a week then he would go manic, his speech would be slurred and his walking wobbly then he would literally starve himself for 2 weeks.  I believe this was his own way of controlling ammonia by not eating protein.  His speech and walking would become better but then this would start all over again in the same pattern. If he got a viral infection he was much, much worse.

I've ordered some BH4  - just waiting for it to arrive.  Dr Goyal wants us to test levels before he would prescribe it.  He did say he would consider prescribing it anyway but responsible way was to check levels ist - this can be done at Breakspear.

At metabolics appt earlier this week the consultant did say that they check BH4 by finger prick sample and send the card to switzerland - maybe you could ask you one of your  NHS consultants for this test to be done.

we are not able to use Yucca - Charlie reacts to it so for now its reduced protein, reduced sulphur, supports to increase Bh4 naturally (tried A1298 liver compound but again reacting because of herbs - going to order ora liver.  Got NADH on order - this helps convert BH2 to BH4.  We have also been using 1/4 folparo for a while which helps re-cycle BH4.  Saw good improvements with folapro but needs to be added at correct time on programme. also still using CBS RNA.  Need to check taurine and ammonia on amino acids to see if we can move on to adding methyl donors and B12 - feel like we've been working towards this point for ever.

I am hoping to send some tests off for Dr Yasko's comments over next couple of weeks.  I just find the fed ex a customs a real pain to sort out so keep putting it off.BW

Alison

 

Hi Alison,

Once again how nicely you explaned this complex ammonia issue in Yasko terms.I wish I could make comments to nah but things are not clear for us at the moment.My son is continuing having his seizures, now turned to be weekly,at the same time,how strange pattern!

He has red flushes and norologist can't pay attention but I feel that it is related with ammonia.I try to take all helpful steps to reduce this (Food manipulations) not very effective.However his medication perhaps keeps his ammonia high, I read it somewhere, medication makes an effect on ammonia but I received some of the test results from GOSH,ammonia was low in blood!

The neurologist promised to talk to metabolic team at the hospital.Still waiting to hear amino acids,bacteria and viruses...results from them.

My son's seizures have also association with viral issues as well, little red spots on his chest but red flushes...links with ammonia in some articles.

What exactly are you paying more attention to keep ammonia low include supplements?

I hope you get more clear picture than us nah but getting a referral to a specialist team is good to eliminate some conditions which they are looking at.

All the best

nevin

>

> > **

> >

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

> > expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

> > (colds, gut) and didn't regain progress on recovery; he " zones " in and out;

> > that we've worked hard on him immune system to avoid illness (and

> > regressions), which is going well, and that we've had gains on

> > scd/antibiotics coinciding with gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

> > that she'd like to do some metabolic testing, at which point I showed her

> > his most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said

> > she'd like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I

> > pressed her for what she might be looking for - eeg for seizure activity -

> > we don't have seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

> >

> >

>

[Guest guest]

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about

these conditions, and of course I can't conclude anything though none seem to

'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we

have learnt a lot in the last 10 months from testing (incl v.low zn:cu;

aluminium and antimony; oxidative stress; mitochondrial issues; inflammation;

yeast, bacteria, clostridia; high vzv) and by treating many of these, we have

seen improvements (both on tests and to a greater or lesser extent in most

symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high

homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more

non-specific testing, ni.e. ot looking for any specific diagnosis but looking

for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan,

eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about

these conditions, and of course I can't conclude anything though none seem to

'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we

have learnt a lot in the last 10 months from testing (incl v.low zn:cu;

aluminium and antimony; oxidative stress; mitochondrial issues; inflammation;

yeast, bacteria, clostridia; high vzv) and by treating many of these, we have

seen improvements (both on tests and to a greater or lesser extent in most

symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high

homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more

non-specific testing, ni.e. ot looking for any specific diagnosis but looking

for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan,

eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about

these conditions, and of course I can't conclude anything though none seem to

'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we

have learnt a lot in the last 10 months from testing (incl v.low zn:cu;

aluminium and antimony; oxidative stress; mitochondrial issues; inflammation;

yeast, bacteria, clostridia; high vzv) and by treating many of these, we have

seen improvements (both on tests and to a greater or lesser extent in most

symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high

homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more

non-specific testing, ni.e. ot looking for any specific diagnosis but looking

for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan,

eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Not sure what she is looking for nah, but my son used to regress with

illness. We would lose months of gains sometimes. It was really discouraging.

However, we are not onto a new thing as with a recent illness he became very

much better shortly after. I think in this case the inflammation that plagues

his brain was reduced for a short period, while his body fought other things.

He was a transformed child for a few days. I am hopeful that because of all of

the things we have done, the regressions with illness are a thing of the past.

Now we just have to figure out how to deal more aggressively with inflammation.

Anita

>

> Hi,

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> 1) metabolic team;

> 2) brain scan;

> 3) eeg;

> 4) forward all results to GOSH and refer him there.

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

> Does anyone know what they might be looking for?

>

> Thanks in advance for any comments,

>

> nah

>

[Guest guest]

Not sure what she is looking for nah, but my son used to regress with

illness. We would lose months of gains sometimes. It was really discouraging.

However, we are not onto a new thing as with a recent illness he became very

much better shortly after. I think in this case the inflammation that plagues

his brain was reduced for a short period, while his body fought other things.

He was a transformed child for a few days. I am hopeful that because of all of

the things we have done, the regressions with illness are a thing of the past.

Now we just have to figure out how to deal more aggressively with inflammation.

Anita

>

> Hi,

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

>

> We mentioned the following: he regressed several times when he got ill (colds,

gut) and didn't regain progress on recovery; he " zones " in and out; that we've

worked hard on him immune system to avoid illness (and regressions), which is

going well, and that we've had gains on scd/antibiotics coinciding with gut

recovery.

>

> She said she was concerned that this might be something metabolic (!) and that

she'd like to do some metabolic testing, at which point I showed her his most

recent H & B and OAT.

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> 1) metabolic team;

> 2) brain scan;

> 3) eeg;

> 4) forward all results to GOSH and refer him there.

>

> I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

>

> Does anyone know what they might be looking for?

>

> Thanks in advance for any comments,

>

> nah

>

[Guest guest]

Hi Suzannah,the Tour group (Barthelemy et al) have looked at elevated HVA levels and reported them as a marker for P5P responders.Low creatinine can be an issue in interpreting other readings because it is usually pretty stable and often used as a reference comparator.Ken Subject: Re: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Monday, 28 November, 2011, 12:56

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about these conditions, and of course I can't conclude anything though none seem to 'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we have learnt a lot in the last 10 months from testing (incl v.low zn:cu; aluminium and antimony; oxidative stress; mitochondrial issues; inflammation; yeast, bacteria, clostridia; high vzv) and by treating many of these, we have seen improvements (both on tests and to a greater or lesser extent in most symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more non-specific testing, ni.e. ot looking for any specific diagnosis but looking for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan, eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Â

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Hi Suzannah,the Tour group (Barthelemy et al) have looked at elevated HVA levels and reported them as a marker for P5P responders.Low creatinine can be an issue in interpreting other readings because it is usually pretty stable and often used as a reference comparator.Ken Subject: Re: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Monday, 28 November, 2011, 12:56

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about these conditions, and of course I can't conclude anything though none seem to 'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we have learnt a lot in the last 10 months from testing (incl v.low zn:cu; aluminium and antimony; oxidative stress; mitochondrial issues; inflammation; yeast, bacteria, clostridia; high vzv) and by treating many of these, we have seen improvements (both on tests and to a greater or lesser extent in most symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more non-specific testing, ni.e. ot looking for any specific diagnosis but looking for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan, eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Â

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Hi Suzannah,the Tour group (Barthelemy et al) have looked at elevated HVA levels and reported them as a marker for P5P responders.Low creatinine can be an issue in interpreting other readings because it is usually pretty stable and often used as a reference comparator.Ken Subject: Re: NHS referrals - metabolics, brain scan, eeg.To: Autism-Biomedical-Europe Date: Monday, 28 November, 2011, 12:56

Hi Ken,

Thanks for this - I've spent a bit of time trawling the internet to learn about these conditions, and of course I can't conclude anything though none seem to 'fit' well. (Are some of them listed in your A-Z?).

Your comments about pathogenesis promted me to review everything, and yes we have learnt a lot in the last 10 months from testing (incl v.low zn:cu; aluminium and antimony; oxidative stress; mitochondrial issues; inflammation; yeast, bacteria, clostridia; high vzv) and by treating many of these, we have seen improvements (both on tests and to a greater or lesser extent in most symptoms except his lost speech).

A couple of things that keep coming up that we haven't addressed are v.high homovallinate in urine( - dopamine?); low creatinine and uric acid in blood.

The paed. actually emailed me today and said that gosh want to do more non-specific testing, ni.e. ot looking for any specific diagnosis but looking for problems with how he metabolises and responds to stress.

Anyway, all that to say thank you for the pointers.

nah

>

>

> Subject: NHS referrals - metabolics, brain scan, eeg.

> To: Autism-Biomedical-Europe

> Date: Friday, 25 November, 2011, 17:11

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Â

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> We saw the paed. yesterday (3rd visit ever) - I went in with v. few expectations.

>

>

>

> We mentioned the following: he regressed several times when he got ill (colds, gut) and didn't regain progress on recovery; he "zones" in and out; that we've worked hard on him immune system to avoid illness (and regressions), which is going well, and that we've had gains on scd/antibiotics coinciding with gut recovery.

>

>

>

> She said she was concerned that this might be something metabolic (!) and that she'd like to do some metabolic testing, at which point I showed her his most recent H & B and OAT.

>

>

>

> She looked at them, asked to copy to fwd to metabollic team, then said she'd like to make the follow referals:

>

> 1) metabolic team;

>

> 2) brain scan;

>

> 3) eeg;

>

> 4) forward all results to GOSH and refer him there.

>

>

>

> I think this is a result, but also terrified at the implications! I pressed her for what she might be looking for - eeg for seizure activity - we don't have seizures to my knowledge - other wise she couldn't specify.

>

>

>

> Does anyone know what they might be looking for?

>

>

>

> Thanks in advance for any comments,

>

>

>

> nah

>

[Guest guest]

Hi Anita,

I've read about that happening with fever etc. So strange that the body

redirects its inflammatory response. It must have been good to get a glimpse of

your son's potential.

It seems that for my son the doc isn't looking for anything specific - she

emailed me to say they want to do some 'non-specific' tests (not sure what type-

I've asked), concerns with metabolism and stress (oxidative?). Not so sure why

she wants a brain scan though.

Do you have anything in mind for the inflammation? Best of luck with it.

nah

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

(colds, gut) and didn't regain progress on recovery; he " zones " in and out; that

we've worked hard on him immune system to avoid illness (and regressions),

which is going well, and that we've had gains on scd/antibiotics coinciding with

gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

that she'd like to do some metabolic testing, at which point I showed her his

most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

>

[Guest guest]

Hi Anita,

I've read about that happening with fever etc. So strange that the body

redirects its inflammatory response. It must have been good to get a glimpse of

your son's potential.

It seems that for my son the doc isn't looking for anything specific - she

emailed me to say they want to do some 'non-specific' tests (not sure what type-

I've asked), concerns with metabolism and stress (oxidative?). Not so sure why

she wants a brain scan though.

Do you have anything in mind for the inflammation? Best of luck with it.

nah

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

(colds, gut) and didn't regain progress on recovery; he " zones " in and out; that

we've worked hard on him immune system to avoid illness (and regressions),

which is going well, and that we've had gains on scd/antibiotics coinciding with

gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

that she'd like to do some metabolic testing, at which point I showed her his

most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

>

[Guest guest]

Hi Anita,

I've read about that happening with fever etc. So strange that the body

redirects its inflammatory response. It must have been good to get a glimpse of

your son's potential.

It seems that for my son the doc isn't looking for anything specific - she

emailed me to say they want to do some 'non-specific' tests (not sure what type-

I've asked), concerns with metabolism and stress (oxidative?). Not so sure why

she wants a brain scan though.

Do you have anything in mind for the inflammation? Best of luck with it.

nah

> >

> > Hi,

> >

> > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

> >

> > We mentioned the following: he regressed several times when he got ill

(colds, gut) and didn't regain progress on recovery; he " zones " in and out; that

we've worked hard on him immune system to avoid illness (and regressions),

which is going well, and that we've had gains on scd/antibiotics coinciding with

gut recovery.

> >

> > She said she was concerned that this might be something metabolic (!) and

that she'd like to do some metabolic testing, at which point I showed her his

most recent H & B and OAT.

> >

> > She looked at them, asked to copy to fwd to metabollic team, then said she'd

like to make the follow referals:

> > 1) metabolic team;

> > 2) brain scan;

> > 3) eeg;

> > 4) forward all results to GOSH and refer him there.

> >

> > I think this is a result, but also terrified at the implications! I pressed

her for what she might be looking for - eeg for seizure activity - we don't have

seizures to my knowledge - other wise she couldn't specify.

> >

> > Does anyone know what they might be looking for?

> >

> > Thanks in advance for any comments,

> >

> > nah

> >

>

[Guest guest]

Hi nah,

We have done loads for inflammation (and oxidative stress which is closely

related) including 190 rounds of chelation, HBOT, loads of supplements, the

right kind of diet, but it's not enough, and of course with something like HBOT,

which really did help while we were doing it, we cannot keep it up. I know

kids who have seen marked improvement with these interventions. Marked,

sustained improvement, but we're still missing pieces for what my son needs.

Anita

> > >

> > > Hi,

> > >

> > > We saw the paed. yesterday (3rd visit ever) - I went in with v. few

expectations.

> > >

> > > We mentioned the following: he regressed several times when he got ill

(colds, gut) and didn't regain progress on recovery; he " zones " in and out; that

we've worked hard on him immune system to avoid illness (and regressions),

which is going well, and that we've had gains on scd/antibiotics coinciding with

gut recovery.

> > >

> > > She said she was concerned that this might be something metabolic (!) and

that she'd like to do some metabolic testing, at which point I showed her his

most recent H & B and OAT.

> > >

> > > She looked at them, asked to copy to fwd to metabollic team, then said

she'd like to make the follow referals:

> > > 1) metabolic team;

> > > 2) brain scan;

> > > 3) eeg;

> > > 4) forward all results to GOSH and refer him there.

> > >

> > > I think this is a result, but also terrified at the implications! I

pressed her for what she might be looking for - eeg for seizure activity - we

don't have seizures to my knowledge - other wise she couldn't specify.

> > >

> > > Does anyone know what they might be looking for?

> > >

> > > Thanks in advance for any comments,

> > >

> > > nah

> > >

> >

>