Re: vancomycin gains but how to

[Guest guest]

Sorry to hear he is slipping back into pain mode is there any way you could get him back on vancomycin? (but good to hear speech gains have remained!). Hope you figure out a way!!It is obvious vancomycin is affecting his pain sensitivity/threshold – could be because it is inhibiting bacteria, or could be through some direct mechanism on pain receptors. Wondering what else you've tried in the past, has anything else affected this straining posturing behaviour?Wondering also if ibuprofen would help? Are you familiar with SCIA protocol?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Mar 2012 21:46:42 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: vancomycin gains but how to

Hi,

I posted a while ago about a course of vancomycin that we gave our son and he has now finished it and we've seen definite gains over a 6 week period, both with language and also his constipation.

To give an example of the language gains, he was struggling beforehand to sequence the sounds in a simple word like "biscuit" and now he is pronouncing this with ease and combining words and even using 4 words together in some cases.

The problem is that we stopped the vancomycin 1 week ago and already i can see he is slipping back into his old constipation problems.

Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3 times a day with no straining or posturing. Now back to 'normal', he tries to go at various times during the day getting very distracted by his attempts to go, then by the end of the day he lies on the floor in pain with his legs crossed really tightly and we end up having to pull them apart to help him go. I know that going only once per day is not that bad but surely this behaviour with crossed legs and wincing and resisting it is not normal?When it comes out it isn't super dried out or hard. It is going back to being more yellowish, during vancomycin it was more brown.

I'm so confused because if this behaviour had originally been caused by a fissure or the traumatic memory of a fissure, why was it suddenly fine on vancomycin?

We are giving probios and vits/mins but wonder if there is anything else we should be doing? Its so heartbreaking that I can see the progress reversing and don't know what to do about it. I should add that so far nothing has reversed with his language gains yet.

Sorry for all the gory details but if this rings a bell with any of you please tell me what to do as I am desperate and confused.

thanks for reading

[Guest guest]

Sorry to hear he is slipping back into pain mode is there any way you could get him back on vancomycin? (but good to hear speech gains have remained!). Hope you figure out a way!!It is obvious vancomycin is affecting his pain sensitivity/threshold – could be because it is inhibiting bacteria, or could be through some direct mechanism on pain receptors. Wondering what else you've tried in the past, has anything else affected this straining posturing behaviour?Wondering also if ibuprofen would help? Are you familiar with SCIA protocol?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Mar 2012 21:46:42 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: vancomycin gains but how to

Hi,

I posted a while ago about a course of vancomycin that we gave our son and he has now finished it and we've seen definite gains over a 6 week period, both with language and also his constipation.

To give an example of the language gains, he was struggling beforehand to sequence the sounds in a simple word like "biscuit" and now he is pronouncing this with ease and combining words and even using 4 words together in some cases.

The problem is that we stopped the vancomycin 1 week ago and already i can see he is slipping back into his old constipation problems.

Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3 times a day with no straining or posturing. Now back to 'normal', he tries to go at various times during the day getting very distracted by his attempts to go, then by the end of the day he lies on the floor in pain with his legs crossed really tightly and we end up having to pull them apart to help him go. I know that going only once per day is not that bad but surely this behaviour with crossed legs and wincing and resisting it is not normal?When it comes out it isn't super dried out or hard. It is going back to being more yellowish, during vancomycin it was more brown.

I'm so confused because if this behaviour had originally been caused by a fissure or the traumatic memory of a fissure, why was it suddenly fine on vancomycin?

We are giving probios and vits/mins but wonder if there is anything else we should be doing? Its so heartbreaking that I can see the progress reversing and don't know what to do about it. I should add that so far nothing has reversed with his language gains yet.

Sorry for all the gory details but if this rings a bell with any of you please tell me what to do as I am desperate and confused.

thanks for reading

[Guest guest]

Sorry to hear he is slipping back into pain mode is there any way you could get him back on vancomycin? (but good to hear speech gains have remained!). Hope you figure out a way!!It is obvious vancomycin is affecting his pain sensitivity/threshold – could be because it is inhibiting bacteria, or could be through some direct mechanism on pain receptors. Wondering what else you've tried in the past, has anything else affected this straining posturing behaviour?Wondering also if ibuprofen would help? Are you familiar with SCIA protocol?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Wed, 07 Mar 2012 21:46:42 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: vancomycin gains but how to

Hi,

I posted a while ago about a course of vancomycin that we gave our son and he has now finished it and we've seen definite gains over a 6 week period, both with language and also his constipation.

To give an example of the language gains, he was struggling beforehand to sequence the sounds in a simple word like "biscuit" and now he is pronouncing this with ease and combining words and even using 4 words together in some cases.

The problem is that we stopped the vancomycin 1 week ago and already i can see he is slipping back into his old constipation problems.

Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3 times a day with no straining or posturing. Now back to 'normal', he tries to go at various times during the day getting very distracted by his attempts to go, then by the end of the day he lies on the floor in pain with his legs crossed really tightly and we end up having to pull them apart to help him go. I know that going only once per day is not that bad but surely this behaviour with crossed legs and wincing and resisting it is not normal?When it comes out it isn't super dried out or hard. It is going back to being more yellowish, during vancomycin it was more brown.

I'm so confused because if this behaviour had originally been caused by a fissure or the traumatic memory of a fissure, why was it suddenly fine on vancomycin?

We are giving probios and vits/mins but wonder if there is anything else we should be doing? Its so heartbreaking that I can see the progress reversing and don't know what to do about it. I should add that so far nothing has reversed with his language gains yet.

Sorry for all the gory details but if this rings a bell with any of you please tell me what to do as I am desperate and confused.

thanks for reading

[Guest guest]

I am no expert, but to me it sounds like the bacterial infection ( I am

assuming) that you were treating with Vancomycin was under control using the

drug but has maybe come back since stopping! I am suspicious of the fissure

memory diagnosis. Bacterial infections of the stomach and gut amongst other

things like leaky gut and low vitamin absorption, can cause constipation slow

mobility and of course a lot of pain. Have you retested since using vancomycin

to see if the infection has returned? You could get an xray to see if there is

loading also? My sons pain was so intense with his current bacterial infection

he covered himself in small pinch bruises and he spent most of the day crying

and wailing and banging his head! My gastro prescribed liquid paraffin for my

sons slow mobility and although I dont feel it is the perfect solution to his

constipation it does stop him from loading.

Sophie x

>

> Hi,

>

> I posted a while ago about a course of vancomycin that we gave our son and he

has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

>

> To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

>

> The problem is that we stopped the vancomycin 1 week ago and already i can see

he is slipping back into his old constipation problems.

>

> Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

>

> When it comes out it isn't super dried out or hard. It is going back to being

more yellowish, during vancomycin it was more brown.

>

> I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

>

> We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

>

> Sorry for all the gory details but if this rings a bell with any of you please

tell me what to do as I am desperate and confused.

>

> thanks for reading

>

[Guest guest]

I am no expert, but to me it sounds like the bacterial infection ( I am

assuming) that you were treating with Vancomycin was under control using the

drug but has maybe come back since stopping! I am suspicious of the fissure

memory diagnosis. Bacterial infections of the stomach and gut amongst other

things like leaky gut and low vitamin absorption, can cause constipation slow

mobility and of course a lot of pain. Have you retested since using vancomycin

to see if the infection has returned? You could get an xray to see if there is

loading also? My sons pain was so intense with his current bacterial infection

he covered himself in small pinch bruises and he spent most of the day crying

and wailing and banging his head! My gastro prescribed liquid paraffin for my

sons slow mobility and although I dont feel it is the perfect solution to his

constipation it does stop him from loading.

Sophie x

>

> Hi,

>

> I posted a while ago about a course of vancomycin that we gave our son and he

has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

>

> To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

>

> The problem is that we stopped the vancomycin 1 week ago and already i can see

he is slipping back into his old constipation problems.

>

> Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

>

> When it comes out it isn't super dried out or hard. It is going back to being

more yellowish, during vancomycin it was more brown.

>

> I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

>

> We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

>

> Sorry for all the gory details but if this rings a bell with any of you please

tell me what to do as I am desperate and confused.

>

> thanks for reading

>

[Guest guest]

I am no expert, but to me it sounds like the bacterial infection ( I am

assuming) that you were treating with Vancomycin was under control using the

drug but has maybe come back since stopping! I am suspicious of the fissure

memory diagnosis. Bacterial infections of the stomach and gut amongst other

things like leaky gut and low vitamin absorption, can cause constipation slow

mobility and of course a lot of pain. Have you retested since using vancomycin

to see if the infection has returned? You could get an xray to see if there is

loading also? My sons pain was so intense with his current bacterial infection

he covered himself in small pinch bruises and he spent most of the day crying

and wailing and banging his head! My gastro prescribed liquid paraffin for my

sons slow mobility and although I dont feel it is the perfect solution to his

constipation it does stop him from loading.

Sophie x

>

> Hi,

>

> I posted a while ago about a course of vancomycin that we gave our son and he

has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

>

> To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

>

> The problem is that we stopped the vancomycin 1 week ago and already i can see

he is slipping back into his old constipation problems.

>

> Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

>

> When it comes out it isn't super dried out or hard. It is going back to being

more yellowish, during vancomycin it was more brown.

>

> I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

>

> We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

>

> Sorry for all the gory details but if this rings a bell with any of you please

tell me what to do as I am desperate and confused.

>

> thanks for reading

>

[Guest guest]

I think I remember your post as I replied. The vancomycin was for clostridia

right?

I was told that a minimum of two months on vanco was needed as clostridia is

spore forming and very hard to get rid of. We did ten weeks back from June last

year and we are still, touch wood, clostridia free (tested).

Everyone warned me about the regression afterwards but I had to do something so

we did the vanco but gave our son a ridiculous amount of probios. The clostridia

will take over if you don't and if you finish the course and the bacteria is

still there then it's going to wreak havoc if you haven't repopulated with good

bacteria. It can come back a long time after you've finished the antibiotics too

as it takes the body a long time to recognise that it's bad bacteria that it

should be getting rid of (because it's been living with it for such a long

time). This is what was explained to me.

There was a bit of conflict in advice from different people regarding doing so

many probios during the course and some said I would be throwing our money down

the drain but I wasn't going to take any chances after failing to get rid of it

the first time we tried antibiotics.

It sounds like you may not have cleared the infection due to the colour of the

stool and his behaviour but time will tell.

If you are not going back to your doctor then for immediate treatment I would

suggest to get your hands on Golden Seal. We had 500mg capsules and gave it

twice a day. It didn't clear our infection but while your child is on it, it

will help a lot. It is recommended to stop GS after two weeks though and have a

break.

Also culterelle, minimum three a day and we still stick to that because it is so

effective.

Others will have to help re the loading. The only thing I use for that here is L

Life, extra magnesium and extra c. If the problem is bigger then that I use Oxy

Powder 2 caps am, 2 caps pm and keep dosing like that until he has a good

thorough clear out.

This is just our experience and others will chime in. I do feel for you and

remember what life was like before vancomycin. We had terrible behavioural

problems and poo smearing etc...

All the best, I hope you get it sorted soon.

x

>

> Hi,

>

> I posted a while ago about a course of vancomycin that we gave our son and he

has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

>

> To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

>

> The problem is that we stopped the vancomycin 1 week ago and already i can see

he is slipping back into his old constipation problems.

>

> Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

>

> When it comes out it isn't super dried out or hard. It is going back to being

more yellowish, during vancomycin it was more brown.

>

> I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

>

> We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

>

> Sorry for all the gory details but if this rings a bell with any of you please

tell me what to do as I am desperate and confused.

>

> thanks for reading

>

[Guest guest]

thank you - so many helpful replies I want to answer all questions but just a

few mins before school...

yes it was for clostridia. I haven't tried golden seal but previously he has

responded well to grapefruit seed extract, which I could try as a natural

antibacterial for the time being? we are giving culturelle and sacc b. but I

will gradually up the dose (hope it is not too late for this). I will phone the

doc and ask about extending the vancomycin.

poo smearing stopped during vanc but is beginning again after 1 week.

re the loading, i really think that there is nothing backed up, because even

pre-biomed when he was going every 3 days we had x-ray and it showed nothing?

plus the 6 weeks of v regular poos cleared him out and he has been going all

week once per day.

will reply to other posts after school run

thanks again

> >

> > Hi,

> >

> > I posted a while ago about a course of vancomycin that we gave our son and

he has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

> >

> > To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

> >

> > The problem is that we stopped the vancomycin 1 week ago and already i can

see he is slipping back into his old constipation problems.

> >

> > Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

> >

> > When it comes out it isn't super dried out or hard. It is going back to

being more yellowish, during vancomycin it was more brown.

> >

> > I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

> >

> > We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

> >

> > Sorry for all the gory details but if this rings a bell with any of you

please tell me what to do as I am desperate and confused.

> >

> > thanks for reading

> >

>

[Guest guest]

thank you - so many helpful replies I want to answer all questions but just a

few mins before school...

yes it was for clostridia. I haven't tried golden seal but previously he has

responded well to grapefruit seed extract, which I could try as a natural

antibacterial for the time being? we are giving culturelle and sacc b. but I

will gradually up the dose (hope it is not too late for this). I will phone the

doc and ask about extending the vancomycin.

poo smearing stopped during vanc but is beginning again after 1 week.

re the loading, i really think that there is nothing backed up, because even

pre-biomed when he was going every 3 days we had x-ray and it showed nothing?

plus the 6 weeks of v regular poos cleared him out and he has been going all

week once per day.

will reply to other posts after school run

thanks again

> >

> > Hi,

> >

> > I posted a while ago about a course of vancomycin that we gave our son and

he has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

> >

> > To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

> >

> > The problem is that we stopped the vancomycin 1 week ago and already i can

see he is slipping back into his old constipation problems.

> >

> > Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

> >

> > When it comes out it isn't super dried out or hard. It is going back to

being more yellowish, during vancomycin it was more brown.

> >

> > I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

> >

> > We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

> >

> > Sorry for all the gory details but if this rings a bell with any of you

please tell me what to do as I am desperate and confused.

> >

> > thanks for reading

> >

>

[Guest guest]

thank you - so many helpful replies I want to answer all questions but just a

few mins before school...

yes it was for clostridia. I haven't tried golden seal but previously he has

responded well to grapefruit seed extract, which I could try as a natural

antibacterial for the time being? we are giving culturelle and sacc b. but I

will gradually up the dose (hope it is not too late for this). I will phone the

doc and ask about extending the vancomycin.

poo smearing stopped during vanc but is beginning again after 1 week.

re the loading, i really think that there is nothing backed up, because even

pre-biomed when he was going every 3 days we had x-ray and it showed nothing?

plus the 6 weeks of v regular poos cleared him out and he has been going all

week once per day.

will reply to other posts after school run

thanks again

> >

> > Hi,

> >

> > I posted a while ago about a course of vancomycin that we gave our son and

he has now finished it and we've seen definite gains over a 6 week period, both

with language and also his constipation.

> >

> > To give an example of the language gains, he was struggling beforehand to

sequence the sounds in a simple word like " biscuit " and now he is pronouncing

this with ease and combining words and even using 4 words together in some

cases.

> >

> > The problem is that we stopped the vancomycin 1 week ago and already i can

see he is slipping back into his old constipation problems.

> >

> > Whilst on vancomycin (after a hellish week of die off) he was going 2 or 3

times a day with no straining or posturing. Now back to 'normal', he tries to go

at various times during the day getting very distracted by his attempts to go,

then by the end of the day he lies on the floor in pain with his legs crossed

really tightly and we end up having to pull them apart to help him go. I know

that going only once per day is not that bad but surely this behaviour with

crossed legs and wincing and resisting it is not normal?

> >

> > When it comes out it isn't super dried out or hard. It is going back to

being more yellowish, during vancomycin it was more brown.

> >

> > I'm so confused because if this behaviour had originally been caused by a

fissure or the traumatic memory of a fissure, why was it suddenly fine on

vancomycin?

> >

> > We are giving probios and vits/mins but wonder if there is anything else we

should be doing? Its so heartbreaking that I can see the progress reversing and

don't know what to do about it. I should add that so far nothing has reversed

with his language gains yet.

> >

> > Sorry for all the gory details but if this rings a bell with any of you

please tell me what to do as I am desperate and confused.

> >

> > thanks for reading

> >

>