Re: Regression after treatment - please advice/URGENT ATTENTION! Nevin

[Guest guest]

Sory just realised I misread your post! Doh

> > >

> > > 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 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 ,

I don't know, I just recently read this and it reflected in my mind when I read

Vesna's message..Surely needs to be focused on, I believe..

nevin

> > > >

> > > > 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 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 Everyone, I have some insight to this debate to share, but will fill in some blanks who I am first, rude not too! I have to apologise I have been lurking around for the last few months, picking up as much as I can from you guys!We went to see Dr G in late March, first time consult. Quick fill in, my youngest son Finlay was diagnosed shortly after his second birthday and our earlier efforts was with a VB/ABA programme,which continues to this day. He is now verbal and made alot of gains in all areas of his speech and understanding, with no apparent

regressions which of course I'm very grateful for. We live up in the north of Scotland and let me tell you all it ain't easy getting qualified ABA people to come this far up the country! Anyways his nursery year was very quickly going down hill when they tried to include him in the class, as you all know they had no idea how to deal with the hitting, biting, pushing , screaming etc... I have to say a big thank you to from Edinburgh who often participates in the group, she said to me a few years back in a phone call ( we had never met) that if she could advise me anything it would be to do Bio with the ABA as the gains would be so much more. Well that stuck with me, and we decided to take the plunge and fly down to meet Dr Goyal this March. We had no base

line, so jumped straight into Hair,Blood,Urine tests (sorry cant remember the names) Genome test. Dr G on the day of consult could see his tonsils looked inflamed and to be honest he was having a lot of behaviours going on around that time. Tests came back high strep count 400 if I remember right, Genome showed he was missing a chromosome that helps remove heavy metals.So he was high in Aluminium and a few other nastie metals. low magnesium, he put us on a few supps on top of what we where giving him below, B12, D3 magnesium, folonic acid and others, more than enough

for us newbies to get our heads round! (we already had him on Super nu thera, fish oil, and probiotics) Once tests started coming back he phoned me unexpectedly to speak about the strep and recommend going straight onto Azithromycin, we where in the process of trying to get a poo sample to send! Not easy as I'm sure alot of you guys know. He said forget that and go straight to anti- biotic, we could go back to that at a later date. So we did 3 days of 500mg and then down to the 250 mg, every day for 3 weeks, and then 5, and 2 for last 3 weeks.We had no sign of die off really, behaviour seemed about the same for 4 weeks. Then we all

started to notice he seemed calmer was coming out with new words, not taught in ABA sessions. And it got to the point last week that teacher pulled me to one side and asked what was going on he seemed like a different kid, and 30 years of teaching had never seen anything like it. He was engaging with the other kids, even used a couple of kids names while playing and all hitting and screaming had all but disappeared! He has pretty much carried on in this vain since. A big touch of wood as I wrote this last sentence. He still has OCD type behaviours at times, but Dr G thinks this is just the strep trying to fight back.Peaking at times. So this is the positive side of using this drug, it has worked for us so far and I hope it will work for some of you guys as well. So after recent phone consult with Dr G we will do another 6 weeks of it,

and are now adding anti-fungals and a few other supps he recommends.I hope this will be enough as I don't want him on them long term. I would be reluctant to do more than this next 6 weeks. Hope this helps some who are perhaps wavering on trying it? As for the sudden death thing if you read article it really is about adults with heart disease, and doesn't appear to my layman eyes to be about kids. It wasn't a clinical research just a case of looking over old medical records. In short for me it doesn't put me off at all. We are also in dispute with local LA on his schooling, he is due to start P1 this term coming, we want to try mainstream with our ABA team in school, and hopeful we keep this calmer, happier little guy till

then! all the best everyone,Richie To: Autism-Biomedical-Europe Sent: Monday, 21 May 2012, 19:57 Subject: Re: Regression after treatment - please advice/URGENT ATTENTION! Nevin

Sory just realised I misread your post! Doh

> > >

> > > 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 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 Richie

thanks for sharing that. Does sound as if strep is your main obstacle - did he

have elevated DNase too?

Fantastic progress - you must be thrilled and hugely relieved. Long may it

continue!

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 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 Steph,

Will look for that Dnase? Could take a while as I have have a folder of test

results now. We have put our faith in DG and so far it hasn't been wanting :-)

Richie

> > >> > >

> > >> > > 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 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

> > >> > >

> > >> >

> > >>

> > >

> > >

> > >

> > >

> > >

> >

>