Re: Re: Regression after treatment - please advice

[Guest guest]

Hi Vesna and KirstyUnfortunately we had severe regression of behaviours too. DD became sensitised to aciclovir and we had to stop.Azithromycin she tolerated whilst on prednisolone ie for the first 5 days, after that she deteriorated in terms of behaviours OCD through the roof ,tearful and screaming, complete sleeplessness. I stopped it after 19 days as she was becoming unmanageable and very aggressive.The explanation I have been given by Dr G is that the bacterial die off is causing extreme inflammation in the brain thus the severe behaviours.In some kids it could trigger fitting.He was extremely keen to push on through but I couldn't cope with the aggression. He thinks the extreme reaction shows there are bacteria to kill off and shows he is "barking up the right tree"I too am in a quandrary about where to go from here.my daughter is older and severely afflicted..Dr G thinks naturals wouldn!t touch her.I feel she has not really been well since the aciclovir having had lots of infections since then.Also she has had diahorrea since the antibiotics that I can!t seem to get back under control despite candex, and Cp1 probiotic.I am goin to spend the next few weeks trying to sort out her gut then take her back to Dr G.Unfortunately I think I know what he will say ie more antibiotics with more prednisolone.Any thoughts anyoneKathI am pinning my hopes on Sent from my iPad

Hi Vesna,

We are seeig the same here.

My son is on acyclovir and now azithromycin.

We did one mont solid of antibiotics and now 5 days on and 2 days off.

His mood is extremely low, he is obsessive and his speech is

Appalling. He is acting he most autistic he has ever been.

We are taking Sam into London on Friday to see Dr G at the clinic as I have never seen him so autistic. We brought him so far and he was doing so well. He never used to make autistic noises etc but does then all the time now. It is very hard to get

Him to do anything. I am so disheartened.

I'll keep you informed as to what Dr G says to do.

Kirsty

X

>

> Dear all,

> My son is 11 and he has good language and relatively good skills level, but ongoing issues with controlling language, anxiety, obsessiveness and ocd traits, all fluctuating in intensity depending on something i could not put my finger on - something I was hoping bio medical approach could help.

>

> We did 4 months of antivirals (both Valtrex and Aciclovir) at the beginning of the year and now for almost a month going through the antibiotic treatment under dr G.

> With antivirals I could not see any clear improvements, but it was clear that my son's ocd and repetitive behaviours somewhat increased.

> Dr G answer to that was to start antibiotics treatment with Azythromycin 1X500 mg(my son's first ever exposure to antibiotics), every day for the first 2 weeks and then for a month 5 days on, 2 days off. The tests did not show increased strep titres, but it was in case of other pathogens.

>

> The problem is that my son's behaviour has now become much more obsessive, difficult and his ocd issues are hitting the roof. He is more indecisive, finds transition and change very difficult, cries more than in years, gets very frustrated, talks to himself, is very overfocused and controlling, very ocd with language.. All in all, he has regressed.

>

> He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..

> Dr G took him off Fluconazole while on the antivirals, in case it was contributing his ocd issues.

>

> I am devastated to have made my son's condition worse. We are trying to get an appointment to see Dr G, but wondering what your thinking might be.

> I feel sorry for my son, feel guilty for exposing him to loads of meds, getting myself financially and otherwise exhausted.

> What do we do next?

> Many thanks,

> Vesna

>

[Guest guest]

there is thinking that you stir up stuff like Lymes (sorry always harping on about Lymes but very relevant in my life right now) when you do a course of Antibiotics! Lymes community call it Herxing! you get a worsening of symptoms and I can vouch for this! The immune system gets an opportunity to see the bacteria and then begins attacking it and of course this causes a lot of toxin release in the body which causes inflammation pain etc, etc, These bacteria are throughout the whole body and brain!! inflammation in the brain as we all know causes a lot of symptoms. I would imagine this is the same for viruses!?? I think perhaps the abx courses need to be longer and of course need to be supported with anti yeast (as we all do do) but also with support in removal of the toxins caused by die off of yeast and bacteria (such as

molybdenum, zinc etc etc)My experience with this awful die-off in the past when I did a short course abx and some hard core (ill advised) iv chelation was that it took me a long time to get my son back to where he was BUT he did make improvements and progress underneath that werent really apparent until everything settled down! Sophie x x To: Autism-Biomedical-Europe Sent: Monday, 21 May 2012, 15:13 Subject:

Re: Regression after treatment - please advice

Hi Vesna,

We are seeig the same here.

My son is on acyclovir and now azithromycin.

We did one mont solid of antibiotics and now 5 days on and 2 days off.

His mood is extremely low, he is obsessive and his speech is

Appalling. He is acting he most autistic he has ever been.

We are taking Sam into London on Friday to see Dr G at the clinic as I have never seen him so autistic. We brought him so far and he was doing so well. He never used to make autistic noises etc but does then all the time now. It is very hard to get

Him to do anything. I am so disheartened.

I'll keep you informed as to what Dr G says to do.

Kirsty

X

>

> Dear all,

> My son is 11 and he has good language and relatively good skills level, but ongoing issues with controlling language, anxiety, obsessiveness and ocd traits, all fluctuating in intensity depending on something i could not put my finger on - something I was hoping bio medical approach could help.

>

> We did 4 months of antivirals (both Valtrex and Aciclovir) at the beginning of the year and now for almost a month going through the antibiotic treatment under dr G.

> With antivirals I could not see any clear improvements, but it was clear that my son's ocd and repetitive behaviours somewhat increased.

> Dr G answer to that was to start antibiotics treatment with Azythromycin 1X500 mg(my son's first ever exposure to antibiotics), every day for the first 2 weeks and then for a month 5 days on, 2 days off. The tests did not show increased strep titres, but it was in case of other pathogens.

>

> The problem is that my son's behaviour has now become much more obsessive, difficult and his ocd issues are hitting the roof. He is more indecisive, finds transition and change very difficult, cries more than in years, gets very frustrated, talks to himself, is very overfocused and controlling, very ocd with language.. All in all, he has regressed.

>

> He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..

> Dr G took him off Fluconazole while on the antivirals, in case it was contributing his ocd issues.

>

> I am devastated to have made my son's condition worse. We are trying to get an appointment to see Dr G, but wondering what your thinking might be.

> I feel sorry for my son, feel guilty for exposing him to loads of meds, getting myself financially and otherwise exhausted.

> What do we do next?

> Many thanks,

> Vesna

>

[Guest guest]

Hi StephYes it has felt a bit grim this last few months but hoping we find something soon that helps. Charcoal does help but problem dosing it during day whilst at school.Sophie appears to get headaches at the drop of a hat,my other nt daughter gets hideous migraines with weird symptoms . It's hard to work out what is going on with Soph, she too is so up and down and can't really tell you how she's feeling.Another obstacle is she seems to be developing more and more allergies since starting aciclovir and Azithromycin, presumably due to the poor state of her gut. She seems to react to candex and neurofen now ,which is a shame as neurofen calmed her down no end.She is also allergic to coconut on testing and have only started to give it recently.is Kombucha made with coconut water? Good that it works so well for Tom.I am pinning my hopes on GCmaf, hoping Dr G will look into it especially as Bradstreet is speaking at the conference in Sept.I am wary of trying more abx for the moment even at lower doses.Sophies testing didn't show anything on the PANDAS screen but extremely high titres for varicella zoster. Difficult to know what that means, Dr G says she is riddled with ongoing chicken pox but the NHS doctors say rubbish it's just good immunity and high levels are normal in a well functioning immune system. Of course they know nowt but it's hard to reconcile two such conflicting views.Well my heads done in but I'm not ready to throw in the towel quite yet.Best wishes KathSent from my iPad

Hi Kath

That sounds really grim.

With Tom when he gets die off he gets head aches primarily. We're giving charcoal every night, keeping his bowels moving and if all else fails he has to have a paracetomol. Die off is horrible. That said, Tom gets headaches and feels terrible when he's not taking anything at all. It's very hard to pin reactions on particular treatments as he is so up and down. Tom is also a bit older - he's 13 and no fun when he's not feeling well. Could you go down a doseage level or is that just going to strengthen whatever it is you're trying to kill off? Would charcoal on a very strict dosing schedule help - i.e. literally two hours after dosing, two hours after that, just before bed - with movicol or oxypowder to move it along?

we're not seeing any bad gut reaction to the anti biotics (which is unusual!) but he's also taking mobeverine which has really helped his digestion, which in turn helps his disbiosis etc. Kombucha is the queen of keeping gut bacteria ok for him, probiotics have never touched it and he's guzzled hundreds of pounds worth over the years. I dread to think. Have you tried that? You can't really overdose on it (ok you probably could but it would be hard to do). Tastes good, not like medicine and very cheap once your scoby is going.

prednisone really didn't suit Tom (horses for courses) he looked like a vampire within days and his lips peeled on a very low dose. but I know prednisone taper is very widely used and meant to be very safe. We didnt' feel it was dangerous for Tom, just not working.

Presumably you can't use neurofen because of reflux?

Steph

> > >

> > > Dear all,

> > > My son is 11 and he has good language and relatively good skills level, but ongoing issues with controlling language, anxiety, obsessiveness and ocd traits, all fluctuating in intensity depending on something i could not put my finger on - something I was hoping bio medical approach could help.

> > >

> > > We did 4 months of antivirals (both Valtrex and Aciclovir) at the beginning of the year and now for almost a month going through the antibiotic treatment under dr G.

> > > With antivirals I could not see any clear improvements, but it was clear that my son's ocd and repetitive behaviours somewhat increased.

> > > Dr G answer to that was to start antibiotics treatment with Azythromycin 1X500 mg(my son's first ever exposure to antibiotics), every day for the first 2 weeks and then for a month 5 days on, 2 days off. The tests did not show increased strep titres, but it was in case of other pathogens.

> > >

> > > The problem is that my son's behaviour has now become much more obsessive, difficult and his ocd issues are hitting the roof. He is more indecisive, finds transition and change very difficult, cries more than in years, gets very frustrated, talks to himself, is very overfocused and controlling, very ocd with language.. All in all, he has regressed.

> > >

> > > He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..

> > > Dr G took him off Fluconazole while on the antivirals, in case it was contributing his ocd issues.

> > >

> > > I am devastated to have made my son's condition worse. We are trying to get an appointment to see Dr G, but wondering what your thinking might be.

> > > I feel sorry for my son, feel guilty for exposing him to loads of meds, getting myself financially and otherwise exhausted.

> > > What do we do next?

> > > Many thanks,

> > > Vesna

> > >

> >

> >

>

[Guest guest]

oh nooooooooooooooooooooooooooo, bloody hell, we have put it off waiting for paed neuro app which is Wednesday

Mx

Hi Vesna,We are seeig the same here.My son is on acyclovir and now azithromycin. We did one mont solid of antibiotics and now 5 days on and 2 days off.His mood is extremely low, he is obsessive and his speech isAppalling. He is acting he most autistic he has ever been. We are taking Sam into London on Friday to see Dr G at the clinic as I have never seen him so autistic. We brought him so far and he was doing so well. He never used to make autistic noises etc but does then all the time now. It is very hard to getHim to do anything. I am so disheartened.I'll keep you informed as to what Dr G says to do.KirstyX>> Dear all,> My son is 11 and he has good language and relatively good skills level, but ongoing issues with controlling language, anxiety, obsessiveness and ocd traits, all fluctuating in intensity depending on something i could not put my finger on - something I was hoping bio medical approach could help.> > We did 4 months of antivirals (both Valtrex and Aciclovir) at the beginning of the year and now for almost a month going through the antibiotic treatment under dr G. > With antivirals I could not see any clear improvements, but it was clear that my son's ocd and repetitive behaviours somewhat increased.> Dr G answer to that was to start antibiotics treatment with Azythromycin 1X500 mg(my son's first ever exposure to antibiotics), every day for the first 2 weeks and then for a month 5 days on, 2 days off. The tests did not show increased strep titres, but it was in case of other pathogens. > > The problem is that my son's behaviour has now become much more obsessive, difficult and his ocd issues are hitting the roof. He is more indecisive, finds transition and change very difficult, cries more than in years, gets very frustrated, talks to himself, is very overfocused and controlling, very ocd with language.. All in all, he has regressed. > > He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..> Dr G took him off Fluconazole while on the antivirals, in case it was contributing his ocd issues. > > I am devastated to have made my son's condition worse. We are trying to get an appointment to see Dr G, but wondering what your thinking might be. > I feel sorry for my son, feel guilty for exposing him to loads of meds, getting myself financially and otherwise exhausted. > What do we do next?> Many thanks, > Vesna>

[Guest guest]

Steph, I had shingles on my head when I was about 18, face like elephant man and pain was a bastard, no treatment though apart from heavy duty painkillers, got over it ok, makes you wonder why they are treating with heavy duty antivirals and side effects when you get over it?Sorry to hear Kirsty about Sam, guessing his gut has been through the mill with the ABs? hope you get some answers and reassurance from Dr G xx To: Autism-Biomedical-Europe Sent: Monday, 21 May 2012, 19:20 Subject: Re: Regression after treatment - please advice

Probably no help but my friend has just been diagnosed with a form of shingles. She's on acyclovir and been signed off work for 6 weeks whilst it kicks in. I think there's an acceptance that both the shingles AND the treatment for shingles make you feel like utter shite. She certainly does but she can rationalise it so it doesn't freak her out

> >

> > Dear all,

> > My son is 11 and he has good language and relatively good skills level,

> but ongoing issues with controlling language, anxiety, obsessiveness and

> ocd traits, all fluctuating in intensity depending on something i could not

> put my finger on - something I was hoping bio medical approach could help.

> >

> > We did 4 months of antivirals (both Valtrex and Aciclovir) at the

> beginning of the year and now for almost a month going through the antibiotic

> treatment under dr G.

> > With antivirals I could not see any clear improvements, but it was clear

> that my son's ocd and repetitive behaviours somewhat increased.

> > Dr G answer to that was to start antibiotics treatment with Azythromycin

> 1X500 mg(my son's first ever exposure to antibiotics), every day for the

> first 2 weeks and then for a month 5 days on, 2 days off. The tests did not

> show increased strep titres, but it was in case of other pathogens.

> >

> > The problem is that my son's behaviour has now become much more

> obsessive, difficult and his ocd issues are hitting the roof. He is more

> indecisive, finds transition and change very difficult, cries more than in years,

> gets very frustrated, talks to himself, is very overfocused and controlling,

> very ocd with language.. All in all, he has regressed.

> >

> > He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium,

> sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..

> > Dr G took him off Fluconazole while on the antivirals, in case it was

> contributing his ocd issues.

> >

> > I am devastated to have made my son's condition worse. We are trying to

> get an appointment to see Dr G, but wondering what your thinking might be.

> > I feel sorry for my son, feel guilty for exposing him to loads of meds,

> getting myself financially and otherwise exhausted.

> > What do we do next?

> > Many thanks,

> > Vesna

> >

>

[Guest guest]

But he does have a history of regression when attacking bugs? First course of KIB comes to mind, hard to stay positive when its falling around you, hangin there

Mx

It's horrible, like going back a few years.Everyone noticing it.I have the feeling Dr G will want to push through.He has started to narrow down all his food now too, which was hard enough before!It's why I've been so quiet on communication. The positive is I have lost about half a stone in stress....!Here's hoping for good news on Friday. > >> > Dear all,> > My son is 11 and he has good language and relatively good skills level, > but ongoing issues with controlling language, anxiety, obsessiveness and > ocd traits, all fluctuating in intensity depending on something i could not > put my finger on - something I was hoping bio medical approach could help.> > > > We did 4 months of antivirals (both Valtrex and Aciclovir) at the > beginning of the year and now for almost a month going through the antibiotic > treatment under dr G. > > With antivirals I could not see any clear improvements, but it was clear > that my son's ocd and repetitive behaviours somewhat increased.> > Dr G answer to that was to start antibiotics treatment with Azythromycin > 1X500 mg(my son's first ever exposure to antibiotics), every day for the > first 2 weeks and then for a month 5 days on, 2 days off. The tests did not > show increased strep titres, but it was in case of other pathogens. > > > > The problem is that my son's behaviour has now become much more > obsessive, difficult and his ocd issues are hitting the roof. He is more > indecisive, finds transition and change very difficult, cries more than in years, > gets very frustrated, talks to himself, is very overfocused and controlling, > very ocd with language.. All in all, he has regressed. > > > > He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, > sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..> > Dr G took him off Fluconazole while on the antivirals, in case it was > contributing his ocd issues. > > > > I am devastated to have made my son's condition worse. We are trying to > get an appointment to see Dr G, but wondering what your thinking might be. > > I feel sorry for my son, feel guilty for exposing him to loads of meds, > getting myself financially and otherwise exhausted. > > What do we do next?> > Many thanks, > > Vesna> >>

[Guest guest]

Yes Kirsty, KIB was brilliant for Sam here after he had that horrendous couple of months with dreadful gut infection, he was so much better, would recommend when you finish, whenever that is, the current treatment xx To:

Autism-Biomedical-Europe Sent: Tuesday, 22 May 2012, 9:45 Subject: Re: Re: Regression after treatment - please advice

But he does have a history of regression when attacking bugs? First course of KIB comes to mind, hard to stay positive when its falling around you, hangin there

Mx

It's horrible, like going back a few years.Everyone noticing it.I have the feeling Dr G will want to push through.He has started to narrow down all his food now too, which was hard enough before!It's why I've been so quiet on communication. The positive is I have lost about half a stone in stress....!Here's hoping for good news on Friday. > >> > Dear all,> > My son is 11 and he has good language and relatively good skills level, > but ongoing issues with controlling language, anxiety, obsessiveness and > ocd traits, all fluctuating in intensity depending on something i could not > put my finger on - something I was hoping bio medical approach could help.> > > > We did 4 months of antivirals (both Valtrex and Aciclovir) at the > beginning of the year and now for almost a month going through the antibiotic > treatment under dr G. > > With antivirals I could not see any clear improvements, but it was clear > that my son's ocd and repetitive behaviours somewhat increased.> > Dr G answer to that was to start antibiotics treatment with Azythromycin > 1X500 mg(my son's first ever exposure to antibiotics), every day for the > first 2 weeks and then for a month 5 days on, 2 days off. The tests did not > show increased strep titres, but it was in case of other pathogens. > > > > The problem is that my son's behaviour has now become much more > obsessive, difficult and his ocd issues are hitting the roof. He is more > indecisive, finds transition and change very difficult, cries more than in years, > gets very frustrated, talks to himself, is very overfocused and controlling, > very ocd with language.. All in all, he has regressed. > > > > He gets regularly home made kefir, Super Nu-Thera, fish oils, magnesium, > sublingual B-12 and folic acid, epsom salts, enzymes, has a varied diet..> > Dr G took him off Fluconazole while on the antivirals, in case it was > contributing his ocd issues. > > > > I am devastated to have made my son's condition worse. We are trying to > get an appointment to see Dr G, but wondering what your thinking might be. > > I feel sorry for my son, feel guilty for exposing him to loads of meds, > getting myself financially and otherwise exhausted. > > What do we do next?> > Many thanks, > > Vesna> >>