Re: Re: aciclovir/prednisolone/zithro

[Guest guest]

Same here, after 7 years of biomed if I could go back and change one thing it would be to use prescription meds much much sooner (and saying this as someone whose son is a relatively good responder to naturals). Knowing what I know now I would use rx grade stuff first , naturals if and when as support Natasa From: za <bbuyonline@...>Reply- "Autism Treatment " <Autism Treatment >Date: Tue, 20 Mar 2012 07:04:24 -0000 "Autism Treatment " <Autism Treatment >Subject: Re: aciclovir/prednisolone/zithro

hi kath

to add to the picture i have to tell you that eddie's 13 years old, and i have been doing biomed since he was 2. we were living in hong kong when he was diagnosed and i went to see a DAN practitioner straight away. over the years, i have tackled everything using 'natural' products and have been very dedicated in terms of diet etc. he has been GAPS for four years now and i have done long/high dose trials with LDM-100, monolaurin, enzymes etc to tackle viral issues. nothing has ever been obviously effective. we have seen small, steady gains with eddie over the years.

i'm telling you, as i haven't taken the decision lightly to use prescription meds. i recently read "the myth of autism" (goldberg), thanks to sara on this list. and it made complete sense to me.

we had not planned to add in prednisolone from the start, but it was clear from the data and eddie's response to the drugs that eddie's immune system was struggling, especially when we added in the zithromax. also eddie has a history of inflammation markers in his blood tests and stools.

karenza

>

> > hi everyone

> >

> > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> >

> > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> >

> > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> >

> > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> >

> > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> >

> > karenza

> >

> >

>

[Guest guest]

Same here, after 7 years of biomed if I could go back and change one thing it would be to use prescription meds much much sooner (and saying this as someone whose son is a relatively good responder to naturals). Knowing what I know now I would use rx grade stuff first , naturals if and when as support Natasa From: za <bbuyonline@...>Reply- "Autism Treatment " <Autism Treatment >Date: Tue, 20 Mar 2012 07:04:24 -0000 "Autism Treatment " <Autism Treatment >Subject: Re: aciclovir/prednisolone/zithro

hi kath

to add to the picture i have to tell you that eddie's 13 years old, and i have been doing biomed since he was 2. we were living in hong kong when he was diagnosed and i went to see a DAN practitioner straight away. over the years, i have tackled everything using 'natural' products and have been very dedicated in terms of diet etc. he has been GAPS for four years now and i have done long/high dose trials with LDM-100, monolaurin, enzymes etc to tackle viral issues. nothing has ever been obviously effective. we have seen small, steady gains with eddie over the years.

i'm telling you, as i haven't taken the decision lightly to use prescription meds. i recently read "the myth of autism" (goldberg), thanks to sara on this list. and it made complete sense to me.

we had not planned to add in prednisolone from the start, but it was clear from the data and eddie's response to the drugs that eddie's immune system was struggling, especially when we added in the zithromax. also eddie has a history of inflammation markers in his blood tests and stools.

karenza

>

> > hi everyone

> >

> > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> >

> > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> >

> > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> >

> > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> >

> > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> >

> > karenza

> >

> >

>

[Guest guest]

Can you give aciclovir with probiotics, or should i space apart???

TIA

x

Autism Treatment From: neno@...Date: Tue, 20 Mar 2012 07:59:13 +0000Subject: Re: Re: aciclovir/prednisolone/zithro

Same here, after 7 years of biomed if I could go back and change one thing it would be to use prescription meds much much sooner (and saying this as someone whose son is a relatively good responder to naturals). Knowing what I know now I would use rx grade stuff first , naturals if and when as support

Natasa

From: za <bbuyonline@...>Reply-"Autism Treatment " <Autism Treatment >Date: Tue, 20 Mar 2012 07:04:24 -0000"Autism Treatment " <Autism Treatment >Subject: Re: aciclovir/prednisolone/zithro

hi kathto add to the picture i have to tell you that eddie's 13 years old, and i have been doing biomed since he was 2. we were living in hong kong when he was diagnosed and i went to see a DAN practitioner straight away. over the years, i have tackled everything using 'natural' products and have been very dedicated in terms of diet etc. he has been GAPS for four years now and i have done long/high dose trials with LDM-100, monolaurin, enzymes etc to tackle viral issues. nothing has ever been obviously effective. we have seen small, steady gains with eddie over the years.i'm telling you, as i haven't taken the decision lightly to use prescription meds. i recently read "the myth of autism" (goldberg), thanks to sara on this list. and it made complete sense to me.we had not planned to add in prednisolone from the start, but it was clear from the data and eddie's response to the drugs that eddie's immune system was struggling, especially when we added in the zithromax. also eddie has a history of inflammation markers in his blood tests and stools.karenza> > > hi everyone> > > > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.> > > > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.> > > > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.> > > > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!> > > > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.> > > > karenza> > > >>

[Guest guest]

Can you give aciclovir with probiotics, or should i space apart???

TIA

x

Autism Treatment From: neno@...Date: Tue, 20 Mar 2012 07:59:13 +0000Subject: Re: Re: aciclovir/prednisolone/zithro

Same here, after 7 years of biomed if I could go back and change one thing it would be to use prescription meds much much sooner (and saying this as someone whose son is a relatively good responder to naturals). Knowing what I know now I would use rx grade stuff first , naturals if and when as support

Natasa

From: za <bbuyonline@...>Reply-"Autism Treatment " <Autism Treatment >Date: Tue, 20 Mar 2012 07:04:24 -0000"Autism Treatment " <Autism Treatment >Subject: Re: aciclovir/prednisolone/zithro

hi kathto add to the picture i have to tell you that eddie's 13 years old, and i have been doing biomed since he was 2. we were living in hong kong when he was diagnosed and i went to see a DAN practitioner straight away. over the years, i have tackled everything using 'natural' products and have been very dedicated in terms of diet etc. he has been GAPS for four years now and i have done long/high dose trials with LDM-100, monolaurin, enzymes etc to tackle viral issues. nothing has ever been obviously effective. we have seen small, steady gains with eddie over the years.i'm telling you, as i haven't taken the decision lightly to use prescription meds. i recently read "the myth of autism" (goldberg), thanks to sara on this list. and it made complete sense to me.we had not planned to add in prednisolone from the start, but it was clear from the data and eddie's response to the drugs that eddie's immune system was struggling, especially when we added in the zithromax. also eddie has a history of inflammation markers in his blood tests and stools.karenza> > > hi everyone> > > > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.> > > > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.> > > > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.> > > > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!> > > > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.> > > > karenza> > > >>

[Guest guest]

I don't think they need to be spaced apart.

Natasa

> Can you give aciclovir with probiotics, or should i space apart???

>

> TIA

>

> x

>

>

>

>

> Autism Treatment

> From: neno@...

> Date: Tue, 20 Mar 2012 07:59:13 +0000

> Subject: Re: Re: aciclovir/prednisolone/zithro

>

>

>

>

>

>

>

> Same here, after 7 years of biomed if I could go back and change one thing

> it would be to use prescription meds much much sooner (and saying this as

> someone whose son is a relatively good responder to naturals). Knowing

> what I know now I would use rx grade stuff first , naturals if and when as

> support

>

>

> Natasa

>

>

>

>

> From: za <bbuyonline@...>

> Reply- " Autism Treatment "

> <Autism Treatment >

> Date: Tue, 20 Mar 2012 07:04:24 -0000

> " Autism Treatment "

> <Autism Treatment >

> Subject: Re: aciclovir/prednisolone/zithro

>

>

>

>

>

>

> hi kath

>

> to add to the picture i have to tell you that eddie's 13 years old, and i

> have been doing biomed since he was 2. we were living in hong kong when he

> was diagnosed and i went to see a DAN practitioner straight away. over the

> years, i have tackled everything using 'natural' products and have been

> very dedicated in terms of diet etc. he has been GAPS for four years now

> and i have done long/high dose trials with LDM-100, monolaurin, enzymes

> etc to tackle viral issues. nothing has ever been obviously effective. we

> have seen small, steady gains with eddie over the years.

>

> i'm telling you, as i haven't taken the decision lightly to use

> prescription meds. i recently read " the myth of autism " (goldberg), thanks

> to sara on this list. and it made complete sense to me.

>

> we had not planned to add in prednisolone from the start, but it was clear

> from the data and eddie's response to the drugs that eddie's immune system

> was struggling, especially when we added in the zithromax. also eddie has

> a history of inflammation markers in his blood tests and stools.

>

> karenza

>

>

>>

>> > hi everyone

>> >

>> > as there seems to be lots of talk about aciclovir, i thought i'd give

>> a quick eddie update with this. eddie started on aciclovir

>> two-and-a-half months ago, and as you might remember, he was very sick

>> on second day (lying on floor vomiting, diarrhea etc). he improved

>> quickly. by the third day he was fine.

>> >

>> > we've since added in erythromycin and prednisolone. we have charted

>> all his behaviours during this time - tics, jerks, stimming etc. we

>> take data everyday during regular activities.

>> >

>> > during the timeline of aciclovir we have noticed obvious gains with

>> bowels (no motility aids required!), speech, interaction, cognitive,

>> receptive language, articulation of speech and a real sense of eddie

>> shining through the sickness. he has lost weight (he had put on a

>> spare tyre) and his tummy has gone flat for the first time since he

>> was a toddler. it looks like the haze is clearing. his general health

>> is good.

>> >

>> > the data showed an increase in behaviours when the erythromycin was

>> introduced, we were dosing 500mg every other day. but since putting in

>> 500mg per day for a month, we have noticed the behaviours decreasing

>> with some spells of no jerks/tics. we had a whole 10 minutes without

>> tics last week for the first time since last summer!!

>> >

>> > i take note about headaches with prednisolone and come to think of it,

>> eddie told me that he had a " bread head " last night (which is his name

>> for headache), so i will watch out for that one thank you.

>> >

>> > karenza

>> >

>> >

>>

>

>

>

>

>

>

[Guest guest]

I don't think they need to be spaced apart.

Natasa

> Can you give aciclovir with probiotics, or should i space apart???

>

> TIA

>

> x

>

>

>

>

> Autism Treatment

> From: neno@...

> Date: Tue, 20 Mar 2012 07:59:13 +0000

> Subject: Re: Re: aciclovir/prednisolone/zithro

>

>

>

>

>

>

>

> Same here, after 7 years of biomed if I could go back and change one thing

> it would be to use prescription meds much much sooner (and saying this as

> someone whose son is a relatively good responder to naturals). Knowing

> what I know now I would use rx grade stuff first , naturals if and when as

> support

>

>

> Natasa

>

>

>

>

> From: za <bbuyonline@...>

> Reply- " Autism Treatment "

> <Autism Treatment >

> Date: Tue, 20 Mar 2012 07:04:24 -0000

> " Autism Treatment "

> <Autism Treatment >

> Subject: Re: aciclovir/prednisolone/zithro

>

>

>

>

>

>

> hi kath

>

> to add to the picture i have to tell you that eddie's 13 years old, and i

> have been doing biomed since he was 2. we were living in hong kong when he

> was diagnosed and i went to see a DAN practitioner straight away. over the

> years, i have tackled everything using 'natural' products and have been

> very dedicated in terms of diet etc. he has been GAPS for four years now

> and i have done long/high dose trials with LDM-100, monolaurin, enzymes

> etc to tackle viral issues. nothing has ever been obviously effective. we

> have seen small, steady gains with eddie over the years.

>

> i'm telling you, as i haven't taken the decision lightly to use

> prescription meds. i recently read " the myth of autism " (goldberg), thanks

> to sara on this list. and it made complete sense to me.

>

> we had not planned to add in prednisolone from the start, but it was clear

> from the data and eddie's response to the drugs that eddie's immune system

> was struggling, especially when we added in the zithromax. also eddie has

> a history of inflammation markers in his blood tests and stools.

>

> karenza

>

>

>>

>> > hi everyone

>> >

>> > as there seems to be lots of talk about aciclovir, i thought i'd give

>> a quick eddie update with this. eddie started on aciclovir

>> two-and-a-half months ago, and as you might remember, he was very sick

>> on second day (lying on floor vomiting, diarrhea etc). he improved

>> quickly. by the third day he was fine.

>> >

>> > we've since added in erythromycin and prednisolone. we have charted

>> all his behaviours during this time - tics, jerks, stimming etc. we

>> take data everyday during regular activities.

>> >

>> > during the timeline of aciclovir we have noticed obvious gains with

>> bowels (no motility aids required!), speech, interaction, cognitive,

>> receptive language, articulation of speech and a real sense of eddie

>> shining through the sickness. he has lost weight (he had put on a

>> spare tyre) and his tummy has gone flat for the first time since he

>> was a toddler. it looks like the haze is clearing. his general health

>> is good.

>> >

>> > the data showed an increase in behaviours when the erythromycin was

>> introduced, we were dosing 500mg every other day. but since putting in

>> 500mg per day for a month, we have noticed the behaviours decreasing

>> with some spells of no jerks/tics. we had a whole 10 minutes without

>> tics last week for the first time since last summer!!

>> >

>> > i take note about headaches with prednisolone and come to think of it,

>> eddie told me that he had a " bread head " last night (which is his name

>> for headache), so i will watch out for that one thank you.

>> >

>> > karenza

>> >

>> >

>>

>

>

>

>

>

>

[Guest guest]

not sure Margaret but worth talking to them about options? maybe they

could act for some things on the basis of urine tests (is uring collection

an option for yo?) or simply checking blood pressure is ok?

There is also ATT in land that has prescribing docs on board.

also I didn't mean to say only rx stuff was good here, but also OTC

pharmaceuticals -- otc antistamines were abs great (only one of those

needed an rx, the rest was otc), and pharm grade supplements

nx

> So this would mean of necessity going to Dr Goyal, I think? I haven't

> because I don't think Henry would co-operate with blood testing - they

> failed with him back in 2007 when he was 7 and so I can't believe they

> would be able to do it know H is 12.

> Dr Goyal said to me at the London conference they could sedate him with

> Melatonin first but I'm not comfortable about this as it would probably

> take a massive amount to knock him out (which could be dangerous by

> suppressing breathing?). Small amounts of sedation make him furious and

> confused and very unco-operative.(Has happened to us with Melatonin,

> cloralhydrate and Vallergan in the past.)

>

> Addenbrooke's successfully used Midazolam in December before a blood test

> - but Addenbrooke's has full resuscitation facilities and a paediatric

> intensive care unit on site.

>

> Has anyone with a big and strong older child like Henry had any experience

> of blood testing at the Breakspear requiring prior sedation, please? Did

> it work?

>

> Alternatively do you think Dr Goyal would prescribe without prior testing?

>

> Thanks,

> Margaret

>

>

>

>

>> >

>> > > hi everyone

>> > >

>> > > as there seems to be lots of talk about aciclovir, i thought i'd

>> give a

>> quick eddie update with this. eddie started on aciclovir two-and-a-half

>> months

>> ago, and as you might remember, he was very sick on second day (lying on

>> floor

>> vomiting, diarrhea etc). he improved quickly. by the third day he was

>> fine.

>> > >

>> > > we've since added in erythromycin and prednisolone. we have charted

>> all his

>> behaviours during this time - tics, jerks, stimming etc. we take data

>> everyday

>> during regular activities.

>> > >

>> > > during the timeline of aciclovir we have noticed obvious gains with

>> bowels

>> (no motility aids required!), speech, interaction, cognitive, receptive

>> language, articulation of speech and a real sense of eddie shining

>> through the

>> sickness. he has lost weight (he had put on a spare tyre) and his tummy

>> has gone

>> flat for the first time since he was a toddler. it looks like the haze

>> is

>> clearing. his general health is good.

>> > >

>> > > the data showed an increase in behaviours when the erythromycin was

>> introduced, we were dosing 500mg every other day. but since putting in

>> 500mg per

>> day for a month, we have noticed the behaviours decreasing with some

>> spells of

>> no jerks/tics. we had a whole 10 minutes without tics last week for the

>> first

>> time since last summer!!

>> > >

>> > > i take note about headaches with prednisolone and come to think of

>> it, eddie

>> told me that he had a " bread head " last night (which is his name for

>> headache),

>> so i will watch out for that one thank you.

>> > >

>> > > karenza

>> > >

>> > >

>> >

>>

>

>

>

[Guest guest]

We are not doing viral testing, he said he could tell things from Autonomic Test and he said no problem to start Strep AB's before Strep test which we are planning to get done on NHS and both of these tests can give false negative so whats the point of stress and expense???

Autonomic is not covered by Caudwell though, that's £200, requires him to sit or lay, have 4 sticky pads and a belt quite tight round his waist and just sit there wired up - do you think he'd go for that?

Mx

In a message dated 20/03/2012 11:43:51 GMT Standard Time, m.collins9@... writes:

Alternatively do you think Dr Goyal would prescribe without prior testing?

[Guest guest]

Hi MargaretMy daughter is 18 and a big strong girl. She had a blood test at the B last summer.We gave her a small dose of " emergency" diazepam a few minutes before. It still wasn't easy took 3 members of staff and my husband.They were very patient. Eventually she "gave in" and let them take blood from her hand once she realised she couldn't go home till it was done.The presence of all the staff showed her they meant business and they didn't actually have to restrain her thankfully.We have done this a few times over the last couple of years and it is getting a little easier each time.It is traumatic though,I have to keep well out of the way!KathSent from my iPadOn 20 Mar 2012, at 11:43, "Margaret" <m.collins9@...> wrote:

So this would mean of necessity going to Dr Goyal, I think? I haven't because I don't think Henry would co-operate with blood testing - they failed with him back in 2007 when he was 7 and so I can't believe they would be able to do it know H is 12.

Dr Goyal said to me at the London conference they could sedate him with Melatonin first but I'm not comfortable about this as it would probably take a massive amount to knock him out (which could be dangerous by suppressing breathing?). Small amounts of sedation make him furious and confused and very unco-operative.(Has happened to us with Melatonin, cloralhydrate and Vallergan in the past.)

Addenbrooke's successfully used Midazolam in December before a blood test - but Addenbrooke's has full resuscitation facilities and a paediatric intensive care unit on site.

Has anyone with a big and strong older child like Henry had any experience of blood testing at the Breakspear requiring prior sedation, please? Did it work?

Alternatively do you think Dr Goyal would prescribe without prior testing?

Thanks,

Margaret

> >

> > > hi everyone

> > >

> > > as there seems to be lots of talk about aciclovir, i thought i'd give a

> quick eddie update with this. eddie started on aciclovir two-and-a-half months

> ago, and as you might remember, he was very sick on second day (lying on floor

> vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> > >

> > > we've since added in erythromycin and prednisolone. we have charted all his

> behaviours during this time - tics, jerks, stimming etc. we take data everyday

> during regular activities.

> > >

> > > during the timeline of aciclovir we have noticed obvious gains with bowels

> (no motility aids required!), speech, interaction, cognitive, receptive

> language, articulation of speech and a real sense of eddie shining through the

> sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone

> flat for the first time since he was a toddler. it looks like the haze is

> clearing. his general health is good.

> > >

> > > the data showed an increase in behaviours when the erythromycin was

> introduced, we were dosing 500mg every other day. but since putting in 500mg per

> day for a month, we have noticed the behaviours decreasing with some spells of

> no jerks/tics. we had a whole 10 minutes without tics last week for the first

> time since last summer!!

> > >

> > > i take note about headaches with prednisolone and come to think of it, eddie

> told me that he had a "bread head" last night (which is his name for headache),

> so i will watch out for that one thank you.

> > >

> > > karenza

> > >

> > >

> >

>

[Guest guest]

Thanks zaThanks for the info. Does Eddie have lots of food allergies and sensitivities?By inflammation markers do you mean C reactive protein? Was he starting to develop sensitivity to the medications? sorry for all my questions. Trying to gather as much info before I embark on the steroids and aciclovir.Best wishes KathSent from my iPadOn 20 Mar 2012, at 07:04, "za" <bbuyonline@...> wrote:

hi kath

to add to the picture i have to tell you that eddie's 13 years old, and i have been doing biomed since he was 2. we were living in hong kong when he was diagnosed and i went to see a DAN practitioner straight away. over the years, i have tackled everything using 'natural' products and have been very dedicated in terms of diet etc. he has been GAPS for four years now and i have done long/high dose trials with LDM-100, monolaurin, enzymes etc to tackle viral issues. nothing has ever been obviously effective. we have seen small, steady gains with eddie over the years.

i'm telling you, as i haven't taken the decision lightly to use prescription meds. i recently read "the myth of autism" (goldberg), thanks to sara on this list. and it made complete sense to me.

we had not planned to add in prednisolone from the start, but it was clear from the data and eddie's response to the drugs that eddie's immune system was struggling, especially when we added in the zithromax. also eddie has a history of inflammation markers in his blood tests and stools.

karenza

>

> > hi everyone

> >

> > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> >

> > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> >

> > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> >

> > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> >

> > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> >

> > karenza

> >

> >

>

[Guest guest]

would he tolerate this do you think (I know some docs precribe it 'for

autism' in general, but higher doses are quite sedating...)

http://www.netdoctor.co.uk/depression/medicines/atarax.html

> Hi Margaret

>

> My daughter is 18 and a big strong girl. She had a blood test at the B

> last summer.We gave her a small dose of " emergency " diazepam a few

> minutes before. It still wasn't easy took 3 members of staff and my

> husband.They were very patient. Eventually she " gave in " and let them take

> blood from her hand once she realised she couldn't go home till it was

> done.The presence of all the staff showed her they meant business and they

> didn't actually have to restrain her thankfully.

> We have done this a few times over the last couple of years and it is

> getting a little easier each time.

> It is traumatic though,I have to keep well out of the way!

> Kath

>

> Sent from my iPad

>

> On 20 Mar 2012, at 11:43, " Margaret " <m.collins9@...> wrote:

>

>> So this would mean of necessity going to Dr Goyal, I think? I haven't

>> because I don't think Henry would co-operate with blood testing - they

>> failed with him back in 2007 when he was 7 and so I can't believe they

>> would be able to do it know H is 12.

>> Dr Goyal said to me at the London conference they could sedate him with

>> Melatonin first but I'm not comfortable about this as it would probably

>> take a massive amount to knock him out (which could be dangerous by

>> suppressing breathing?). Small amounts of sedation make him furious and

>> confused and very unco-operative.(Has happened to us with Melatonin,

>> cloralhydrate and Vallergan in the past.)

>>

>> Addenbrooke's successfully used Midazolam in December before a blood

>> test - but Addenbrooke's has full resuscitation facilities and a

>> paediatric intensive care unit on site.

>>

>> Has anyone with a big and strong older child like Henry had any

>> experience of blood testing at the Breakspear requiring prior sedation,

>> please? Did it work?

>>

>> Alternatively do you think Dr Goyal would prescribe without prior

>> testing?

>>

>> Thanks,

>> Margaret

>>

>>

>> > >

>> > > > hi everyone

>> > > >

>> > > > as there seems to be lots of talk about aciclovir, i thought i'd

>> give a

>> > quick eddie update with this. eddie started on aciclovir

>> two-and-a-half months

>> > ago, and as you might remember, he was very sick on second day (lying

>> on floor

>> > vomiting, diarrhea etc). he improved quickly. by the third day he was

>> fine.

>> > > >

>> > > > we've since added in erythromycin and prednisolone. we have

>> charted all his

>> > behaviours during this time - tics, jerks, stimming etc. we take data

>> everyday

>> > during regular activities.

>> > > >

>> > > > during the timeline of aciclovir we have noticed obvious gains

>> with bowels

>> > (no motility aids required!), speech, interaction, cognitive,

>> receptive

>> > language, articulation of speech and a real sense of eddie shining

>> through the

>> > sickness. he has lost weight (he had put on a spare tyre) and his

>> tummy has gone

>> > flat for the first time since he was a toddler. it looks like the haze

>> is

>> > clearing. his general health is good.

>> > > >

>> > > > the data showed an increase in behaviours when the erythromycin

>> was

>> > introduced, we were dosing 500mg every other day. but since putting in

>> 500mg per

>> > day for a month, we have noticed the behaviours decreasing with some

>> spells of

>> > no jerks/tics. we had a whole 10 minutes without tics last week for

>> the first

>> > time since last summer!!

>> > > >

>> > > > i take note about headaches with prednisolone and come to think of

>> it, eddie

>> > told me that he had a " bread head " last night (which is his name for

>> headache),

>> > so i will watch out for that one thank you.

>> > > >

>> > > > karenza

>> > > >

>> > > >

>> > >

>> >

>>

>>

>

[Guest guest]

Thanks za, very helpfulMy Sophie is developing more and more food sensitivities ?She is GF CF but I am struggling to feed her a healthy diet. I will have to have a look at the GAPS diet .BW KathSent from my iPadOn 20 Mar 2012, at 16:20, "za" <bbuyonline@...> wrote:

hi kath

yes, eddie has lots of food allergies, but things have improved with gaps diet. i'd have to check our bloods with regards inflammation, but i remember practitioners (m, dr heard, dr g) commenting that there are inflammatory markers that they couldn't believe the NHS gastro had ignored. i don't believe eddie has shown sensitivity to any medications, no. symptoms that we have experienced indicate waking up of immune system and detox. he had lots of bowel clearouts on the aciclovir for example - as if i'd given him oxypowder - but i hadn't.

karenza

> > >

> > > > hi everyone

> > > >

> > > > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> > > >

> > > > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> > > >

> > > > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> > > >

> > > > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> > > >

> > > > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> > > >

> > > > karenza

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Thanks za, very helpfulMy Sophie is developing more and more food sensitivities ?She is GF CF but I am struggling to feed her a healthy diet. I will have to have a look at the GAPS diet .BW KathSent from my iPadOn 20 Mar 2012, at 16:20, "za" <bbuyonline@...> wrote:

hi kath

yes, eddie has lots of food allergies, but things have improved with gaps diet. i'd have to check our bloods with regards inflammation, but i remember practitioners (m, dr heard, dr g) commenting that there are inflammatory markers that they couldn't believe the NHS gastro had ignored. i don't believe eddie has shown sensitivity to any medications, no. symptoms that we have experienced indicate waking up of immune system and detox. he had lots of bowel clearouts on the aciclovir for example - as if i'd given him oxypowder - but i hadn't.

karenza

> > >

> > > > hi everyone

> > > >

> > > > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> > > >

> > > > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> > > >

> > > > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> > > >

> > > > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> > > >

> > > > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> > > >

> > > > karenza

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Thanks za, very helpfulMy Sophie is developing more and more food sensitivities ?She is GF CF but I am struggling to feed her a healthy diet. I will have to have a look at the GAPS diet .BW KathSent from my iPadOn 20 Mar 2012, at 16:20, "za" <bbuyonline@...> wrote:

hi kath

yes, eddie has lots of food allergies, but things have improved with gaps diet. i'd have to check our bloods with regards inflammation, but i remember practitioners (m, dr heard, dr g) commenting that there are inflammatory markers that they couldn't believe the NHS gastro had ignored. i don't believe eddie has shown sensitivity to any medications, no. symptoms that we have experienced indicate waking up of immune system and detox. he had lots of bowel clearouts on the aciclovir for example - as if i'd given him oxypowder - but i hadn't.

karenza

> > >

> > > > hi everyone

> > > >

> > > > as there seems to be lots of talk about aciclovir, i thought i'd give a quick eddie update with this. eddie started on aciclovir two-and-a-half months ago, and as you might remember, he was very sick on second day (lying on floor vomiting, diarrhea etc). he improved quickly. by the third day he was fine.

> > > >

> > > > we've since added in erythromycin and prednisolone. we have charted all his behaviours during this time - tics, jerks, stimming etc. we take data everyday during regular activities.

> > > >

> > > > during the timeline of aciclovir we have noticed obvious gains with bowels (no motility aids required!), speech, interaction, cognitive, receptive language, articulation of speech and a real sense of eddie shining through the sickness. he has lost weight (he had put on a spare tyre) and his tummy has gone flat for the first time since he was a toddler. it looks like the haze is clearing. his general health is good.

> > > >

> > > > the data showed an increase in behaviours when the erythromycin was introduced, we were dosing 500mg every other day. but since putting in 500mg per day for a month, we have noticed the behaviours decreasing with some spells of no jerks/tics. we had a whole 10 minutes without tics last week for the first time since last summer!!

> > > >

> > > > i take note about headaches with prednisolone and come to think of it, eddie told me that he had a "bread head" last night (which is his name for headache), so i will watch out for that one thank you.

> > > >

> > > > karenza

> > > >

> > > >

> > >

> >

> >

>