Re: Biomed, gfcf, 1 step forwards/1 step backwards

[Guest guest]

Thanks to everyone on this list for sharing. I've learnt so much from all your experiences.

Someone mentioned seizures, just wanted to say we saw good results with Chiropractic and Cranial Osteopathy, though you can't do both at same time.

We've been gfcf since A's 3rd birthday, nearly 2 years now and it's been very worthwhile. Doing biomed for approx 6 months. He's so sensitive, we have to go really slow. Keep on getting amazing results and then he crashes, ending up worse than before. After Difflucan he really regressed, it lasted 3 months. On NCD 3rops 3x daily he was doing so well and now regressed again, hardly speaking. Gave it a week's break and started again at 1 drop 3x daily. This time seeing black rings under eyes, otherwise a very happy little boy, but speech still not back. He didn't lose receptive language this time, he understands what we say, just answers with gestures instead of talking. I panic with every regression, feeling " will he ever bounce back?" After all it was a regression which started this whole thing off and he didn't recover from that - YET. Does anyone else get these progress/regress cycles? Any advice?

HBOT - can anyone recommend UK place, preferably in NE?

Any experiences positive/negative? I feel some of our problem is caused by oxygen deprivation during seizures, so maybe HBOT makes sense.??

Thanks to everyone for a very helpful list

[Guest guest]

Thanks to everyone on this list for sharing. I've learnt so much from all your experiences.

Someone mentioned seizures, just wanted to say we saw good results with Chiropractic and Cranial Osteopathy, though you can't do both at same time.

We've been gfcf since A's 3rd birthday, nearly 2 years now and it's been very worthwhile. Doing biomed for approx 6 months. He's so sensitive, we have to go really slow. Keep on getting amazing results and then he crashes, ending up worse than before. After Difflucan he really regressed, it lasted 3 months. On NCD 3rops 3x daily he was doing so well and now regressed again, hardly speaking. Gave it a week's break and started again at 1 drop 3x daily. This time seeing black rings under eyes, otherwise a very happy little boy, but speech still not back. He didn't lose receptive language this time, he understands what we say, just answers with gestures instead of talking. I panic with every regression, feeling " will he ever bounce back?" After all it was a regression which started this whole thing off and he didn't recover from that - YET. Does anyone else get these progress/regress cycles? Any advice?

HBOT - can anyone recommend UK place, preferably in NE?

Any experiences positive/negative? I feel some of our problem is caused by oxygen deprivation during seizures, so maybe HBOT makes sense.??

Thanks to everyone for a very helpful list

[Guest guest]

Hi ,

It has definitely been a very forwards backwards road. We have been

GFCF for over a year, and along the way we have discovered more food

intolerances which have made a difference too (soya has the same

effect on him as milk) The cleaner the body gets the more it reacts

to other things we may have missed before.

I have found that there are regressions when you are treating

things, and if you just keep stirring things up without completely

treating it then you can keep these behaviours. For example, my son

lost his ability to know when he wanted the toilet the whole time he

was on a mild dose of enzymes, (over 5 months) and then as soon as

we stopped it it came back!. It was apparently keeping his gut bugs

stirred up.

We have a lot of regressions and then gains. We lost language for a

while, but it came back -old words and new so I am sure he retained

them as well as learnt new.

Have you had tests done to see what is happening. This has been so

helpful for me, as well as getting advice on how to treat things -

was going round in circles for a while and starting to panic! I did

not realise th eextent of the imbalances in my sons body, and the

yeast and parasites. It makes more sense to me now that he should be

reacting in the way he does.

All the best,

Sophie

-- In Autism Treatment , " "

wrote:

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both

at same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and

it's been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing

results and then he crashes, ending up worse than before. After

Difflucan he really regressed, it lasted 3 months. On NCD 3rops 3x

daily he was doing so well and now regressed again, hardly speaking.

Gave it a week's break and started again at 1 drop 3x daily. This

time seeing black rings under eyes, otherwise a very happy little

boy, but speech still not back. He didn't lose receptive language

this time, he understands what we say, just answers with gestures

instead of talking. I panic with every regression, feeling " will he

ever bounce back? " After all it was a regression which started this

whole thing off and he didn't recover from that - YET. Does anyone

else get these progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

Hi ,

It has definitely been a very forwards backwards road. We have been

GFCF for over a year, and along the way we have discovered more food

intolerances which have made a difference too (soya has the same

effect on him as milk) The cleaner the body gets the more it reacts

to other things we may have missed before.

I have found that there are regressions when you are treating

things, and if you just keep stirring things up without completely

treating it then you can keep these behaviours. For example, my son

lost his ability to know when he wanted the toilet the whole time he

was on a mild dose of enzymes, (over 5 months) and then as soon as

we stopped it it came back!. It was apparently keeping his gut bugs

stirred up.

We have a lot of regressions and then gains. We lost language for a

while, but it came back -old words and new so I am sure he retained

them as well as learnt new.

Have you had tests done to see what is happening. This has been so

helpful for me, as well as getting advice on how to treat things -

was going round in circles for a while and starting to panic! I did

not realise th eextent of the imbalances in my sons body, and the

yeast and parasites. It makes more sense to me now that he should be

reacting in the way he does.

All the best,

Sophie

-- In Autism Treatment , " "

wrote:

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both

at same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and

it's been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing

results and then he crashes, ending up worse than before. After

Difflucan he really regressed, it lasted 3 months. On NCD 3rops 3x

daily he was doing so well and now regressed again, hardly speaking.

Gave it a week's break and started again at 1 drop 3x daily. This

time seeing black rings under eyes, otherwise a very happy little

boy, but speech still not back. He didn't lose receptive language

this time, he understands what we say, just answers with gestures

instead of talking. I panic with every regression, feeling " will he

ever bounce back? " After all it was a regression which started this

whole thing off and he didn't recover from that - YET. Does anyone

else get these progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

---

Hi

We did HBOT for 15 days consecutively in the Spring, then weekly for

one hour at 2 bar for the past 10 weeks. Definitely has a compounding

effect on the DMSA chelation. We are also supplementing, gf/cf

additive, yeast and soy free, MB12, homeopathy, cranial osteopathy,

etc., I should think oxygen extremely beneficial for seizures as HBOT

is recommended for CP to combat effects of oxygen deprivation.

No idea about North East - we go to Bedford but you will need to find

MS centre where they will take children and have a paediatrician or

other write to the centre to authorise. Dr Heard at Breakspear did

this and protocol was devised by Prof at Dundee Uni.

HTH

Rhona

In Autism Treatment , " "

wrote:

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

---

Hi

We did HBOT for 15 days consecutively in the Spring, then weekly for

one hour at 2 bar for the past 10 weeks. Definitely has a compounding

effect on the DMSA chelation. We are also supplementing, gf/cf

additive, yeast and soy free, MB12, homeopathy, cranial osteopathy,

etc., I should think oxygen extremely beneficial for seizures as HBOT

is recommended for CP to combat effects of oxygen deprivation.

No idea about North East - we go to Bedford but you will need to find

MS centre where they will take children and have a paediatrician or

other write to the centre to authorise. Dr Heard at Breakspear did

this and protocol was devised by Prof at Dundee Uni.

HTH

Rhona

In Autism Treatment , " "

wrote:

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

---

Hi

We did HBOT for 15 days consecutively in the Spring, then weekly for

one hour at 2 bar for the past 10 weeks. Definitely has a compounding

effect on the DMSA chelation. We are also supplementing, gf/cf

additive, yeast and soy free, MB12, homeopathy, cranial osteopathy,

etc., I should think oxygen extremely beneficial for seizures as HBOT

is recommended for CP to combat effects of oxygen deprivation.

No idea about North East - we go to Bedford but you will need to find

MS centre where they will take children and have a paediatrician or

other write to the centre to authorise. Dr Heard at Breakspear did

this and protocol was devised by Prof at Dundee Uni.

HTH

Rhona

In Autism Treatment , " "

wrote:

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

Dear ,

I would agree 100% it is a VERY bumpy road to recovery. We have had

constant regressions and improvements for about 16 months - but the

underlying trend has been one of improvement. (Our little boy,

Eddie, has improved massively from early onset autism - his ATEC has

dropped from 84 to 14 and we are preparing a little summary about his

improvement).

We have found every regression hard. Each time I promised myself

that I would be more confident when he next regressed - and would

even try to think of it as a good healing regression and be more

confident that he would come out of it with another bug defeated.

But we never have managed this! Every time he regresses we pull back

a bit on what we've just introduced, we check and recheck all his

foods and creams etc for allergies and we order another stool and

organix test. Now we know that when we get one bug one of the others

will probably try to come back and so we rotate his gut killing

protocols and it is working well. You really will begin to work out

at least some of the signs and symptoms.

Sometimes we found we really had to go slow - some things were very

hard to get started. For example, Eddie had a terrible time when we

tried to give probiotics. He was in so much pain after the first

tiniest sprinkle we had to stop and then try again with something

else later. For us it was S. Boulardii that he could tolerate first

and we slowly worked that up and then added probiotics. Now he takes

so MUCH it's amazing and they have such a great effect too.

We have found being SCD and low oxalate have helped enormously. We

use Houston enzymes and all the usual supplements. Hope you will be

encouraged.

Best wishes,

Sandy

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

Dear ,

I would agree 100% it is a VERY bumpy road to recovery. We have had

constant regressions and improvements for about 16 months - but the

underlying trend has been one of improvement. (Our little boy,

Eddie, has improved massively from early onset autism - his ATEC has

dropped from 84 to 14 and we are preparing a little summary about his

improvement).

We have found every regression hard. Each time I promised myself

that I would be more confident when he next regressed - and would

even try to think of it as a good healing regression and be more

confident that he would come out of it with another bug defeated.

But we never have managed this! Every time he regresses we pull back

a bit on what we've just introduced, we check and recheck all his

foods and creams etc for allergies and we order another stool and

organix test. Now we know that when we get one bug one of the others

will probably try to come back and so we rotate his gut killing

protocols and it is working well. You really will begin to work out

at least some of the signs and symptoms.

Sometimes we found we really had to go slow - some things were very

hard to get started. For example, Eddie had a terrible time when we

tried to give probiotics. He was in so much pain after the first

tiniest sprinkle we had to stop and then try again with something

else later. For us it was S. Boulardii that he could tolerate first

and we slowly worked that up and then added probiotics. Now he takes

so MUCH it's amazing and they have such a great effect too.

We have found being SCD and low oxalate have helped enormously. We

use Houston enzymes and all the usual supplements. Hope you will be

encouraged.

Best wishes,

Sandy

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

Dear ,

I would agree 100% it is a VERY bumpy road to recovery. We have had

constant regressions and improvements for about 16 months - but the

underlying trend has been one of improvement. (Our little boy,

Eddie, has improved massively from early onset autism - his ATEC has

dropped from 84 to 14 and we are preparing a little summary about his

improvement).

We have found every regression hard. Each time I promised myself

that I would be more confident when he next regressed - and would

even try to think of it as a good healing regression and be more

confident that he would come out of it with another bug defeated.

But we never have managed this! Every time he regresses we pull back

a bit on what we've just introduced, we check and recheck all his

foods and creams etc for allergies and we order another stool and

organix test. Now we know that when we get one bug one of the others

will probably try to come back and so we rotate his gut killing

protocols and it is working well. You really will begin to work out

at least some of the signs and symptoms.

Sometimes we found we really had to go slow - some things were very

hard to get started. For example, Eddie had a terrible time when we

tried to give probiotics. He was in so much pain after the first

tiniest sprinkle we had to stop and then try again with something

else later. For us it was S. Boulardii that he could tolerate first

and we slowly worked that up and then added probiotics. Now he takes

so MUCH it's amazing and they have such a great effect too.

We have found being SCD and low oxalate have helped enormously. We

use Houston enzymes and all the usual supplements. Hope you will be

encouraged.

Best wishes,

Sandy

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>

[Guest guest]

,

We've experienced very much the same as you. Gains and then losses

that take away those gains and more. I'm interested in what you've

said about NCD. I had just tried some with my son, based on the idea

that he has bad viral issues and I am unwilling to try another viral

protocol as I've done before or Valtrex. My son, at 4 drops a day,

started having seizures again. The last time my son had seizures we

were doing a viral protocol, from which he had great gains, almost

all of which we've lost (more on that in another post one day). The

seizures stopped, perhaps because of steps I took or perhaps not, I'm

not sure.

Anyway, my point is, I think that some of these kids who cycle

through these very frustrating patterns are trying to deal with

viruses. Perhaps your child's seizures were a part of this as well.

We did 80 dives of HBOT. We saw some gains, but nothing that stuck.

That said, I rarely read about people who haven't seen gains from the

HBOT, but perhaps they just don't post.

I'm sorry this isn't more helpful.

Anita

>

> Thanks to everyone on this list for sharing. I've learnt so much

from all your experiences.

> Someone mentioned seizures, just wanted to say we saw good results

with Chiropractic and Cranial Osteopathy, though you can't do both at

same time.

> We've been gfcf since A's 3rd birthday, nearly 2 years now and it's

been very worthwhile. Doing biomed for approx 6 months. He's so

sensitive, we have to go really slow. Keep on getting amazing results

and then he crashes, ending up worse than before. After Difflucan he

really regressed, it lasted 3 months. On NCD 3rops 3x daily he was

doing so well and now regressed again, hardly speaking. Gave it a

week's break and started again at 1 drop 3x daily. This time seeing

black rings under eyes, otherwise a very happy little boy, but speech

still not back. He didn't lose receptive language this time, he

understands what we say, just answers with gestures instead of

talking. I panic with every regression, feeling " will he ever bounce

back? " After all it was a regression which started this whole thing

off and he didn't recover from that - YET. Does anyone else get these

progress/regress cycles? Any advice?

> HBOT - can anyone recommend UK place, preferably in NE?

> Any experiences positive/negative? I feel some of our problem is

caused by oxygen deprivation during seizures, so maybe HBOT makes

sense.??

> Thanks to everyone for a very helpful list

>

>