Re: Update on Charlie using bh4 and spironalcton

[Guest guest]

What fantastic progress!! Congratulations!

What other things have you seem change and have you seen any ill

effects ? Dr Usman mentioned us trying Spironolactone with my

daughter Katy,but as she reacts badly to a lot of things I've been

waiting until I could find out more about it.

Thanks for posting this Peta.

Love Sharon.

>

[Guest guest]

Hi Sharon

We started using 50mg a day and that did lead to constipation ( which

has been noted as a side effect) then we had a break and started

oxypowder and after a few weeks went back on 25mg a day which seems

to be working better. Also he started waking in the night and

drinking nearly a pint of water when he was on 50mg but this could

have also been diaorrhea from oxypowder. Anyway this has stopped.

Another good thing he has started to do is play board games quite

well - taking turns and understanding some of the rules - monopoly

still a bit beyond him!

Apparently there is a paper out on spironalcton and our dr's(

Bradstreet) say it is a very exciting new treatment. I haven't read

the paper yet but I'm sure somebody knows about it. Charlie's

neopterine and bioterine levels were 1:1 which is not good should be

1:2. The neopterine is poisonous and needs to be bought down and the

bh4 helps to raise the biopterine so they work well together - at

least that is what I understand.

I know it must be scary to try it and we are lucky because other than

having yeast, yeast and more yeast Charlie does not react too badly

to most treatments. Or maybe he does because of the yeast!

Good luck

Peta -

-- In Autism Treatment , " Sharon "

wrote:

>

> What fantastic progress!! Congratulations!

>

> What other things have you seem change and have you seen any ill

> effects ? Dr Usman mentioned us trying Spironolactone with my

> daughter Katy,but as she reacts badly to a lot of things I've been

> waiting until I could find out more about it.

>

> Thanks for posting this Peta.

>

> Love Sharon.

>

>

>

>

>

> >

>

[Guest guest]

Thanks for the info,

There's alot I need to look into.I don't understand anything about

neoterine and bioterine.

We have an appt next week with DR Usman so I'll ask more about it

then.Katy does have periods where she gets puffy, when she is not

doing well and has a period of drinking lots a day or so before she

goes off,I don't know if this has to do with Angiotensin.We are

waiting for her Yasko genetic profile to come back.

Thanks again and I hope Charlie continues to do so very well.

Best Wishes,

Sharon

> > >

> >

>

[Guest guest]

>

[Guest guest]

Hi Peta,

Thanks for posting about BH4! It's really good to hear - we are

looking forward to trying some soon.

Best wishes,

Sandy

>

[Guest guest]

Hi

We did an immune system test( urinary neopterine profile) - French

lab. This showed neopterine was 420 ( range 110-180) and biopterin

was 453. Biop level should be twice neop. These results show(

quote):increased level( neop) is positively correlated with

infectious, infammatory, immune and neoplastic disease evolutivity.

Copying does make me sound intelligent!

Also suggests increased oxidative damage issued from immune

activation. His immune system is screwed as well as everything else!

As I understand the spiron brings down the neop level - neop at

increased level is poisonous. Our dr said after taking spiron for 3-4

months and then retesting the neop levels were reduced and the child

improved ( on other kids in his clinic) We will tetest in Feb and I

will let you know.

We used valtrex for about 10 months and couldn't really attribute any

real gains to it but spiron and bh4 have definitely moved him on.

hth

Peta -

-- In Autism Treatment , " Crombie "

wrote:

>

>

> >

>

[Guest guest]

Sorry I don't know. What I posted was the bit I have gleaned from my dr and I could have got some bits muddled! We are with Bradstreet's clinic. I don't think they have been doing this immune system test for long. I'm sure most of you guys know a lot more than me. We are trying fairly new treatments because of the clinic we are with.

>>Anita - this might be a good question for Mark on Lab test discussions? I have him on my wish list for our next conference

Mandi x

[Guest guest]

Hello Peta,

Thanks so much for posting about Charlie's progress. It is

absolutely lovely to read--he's made amazing progress :-). I also

appreciate learning about this testing you've had done. I'd never

heard of it before. I was wondering if you might happen to know if a

child's oxidative stress level measured normal on a different kind of

test, if this was perhaps a sign that the neopterine and biopterin

levels were more likely to be normal.

Thanks,

Anita

>

> Hi

> We did an immune system test( urinary neopterine profile) - French

> lab. This showed neopterine was 420 ( range 110-180) and biopterin

> was 453. Biop level should be twice neop. These results show(

> quote):increased level( neop) is positively correlated with

> infectious, infammatory, immune and neoplastic disease evolutivity.

> Copying does make me sound intelligent!

> Also suggests increased oxidative damage issued from immune

> activation. His immune system is screwed as well as everything else!

> As I understand the spiron brings down the neop level - neop at

> increased level is poisonous. Our dr said after taking spiron for 3-

4

> months and then retesting the neop levels were reduced and the

child

> improved ( on other kids in his clinic) We will tetest in Feb and I

> will let you know.

> We used valtrex for about 10 months and couldn't really attribute

any

> real gains to it but spiron and bh4 have definitely moved him on.

> hth

> Peta -

[Guest guest]

Hi Anita

Sorry I don't know. What I posted was the bit I have gleaned from my

dr and I could have got some bits muddled! We are with Bradstreet's

clinic. I don't think they have been doing this immune system test

for long. I'm sure most of you guys know a lot more than me. We are

trying fairly new treatments because of the clinic we are with.

Peta-

-- In Autism Treatment , " Anita Kugelstadt "

wrote:

>

> Hello Peta,

>

> Thanks so much for posting about Charlie's progress. It is

> absolutely lovely to read--he's made amazing progress :-). I also

> appreciate learning about this testing you've had done. I'd never

> heard of it before. I was wondering if you might happen to know if

a

> child's oxidative stress level measured normal on a different kind

of

> test, if this was perhaps a sign that the neopterine and biopterin

> levels were more likely to be normal.

>

> Thanks,

>

> Anita

>

>

>

>

> >

> > Hi

> > We did an immune system test( urinary neopterine profile) -

French

> > lab. This showed neopterine was 420 ( range 110-180) and

biopterin

> > was 453. Biop level should be twice neop. These results show(

> > quote):increased level( neop) is positively correlated with

> > infectious, infammatory, immune and neoplastic disease

evolutivity.

> > Copying does make me sound intelligent!

> > Also suggests increased oxidative damage issued from immune

> > activation. His immune system is screwed as well as everything

else!

> > As I understand the spiron brings down the neop level - neop at

> > increased level is poisonous. Our dr said after taking spiron for

3-

> 4

> > months and then retesting the neop levels were reduced and the

> child

> > improved ( on other kids in his clinic) We will tetest in Feb and

I

> > will let you know.

> > We used valtrex for about 10 months and couldn't really attribute

> any

> > real gains to it but spiron and bh4 have definitely moved him on.

> > hth

> > Peta -

>