Re: Intro - Autism and OCD advice please

[Guest guest]

Gagging has been a symptom of several Pandas kids, some of whom have developed

severe anorexia due to a fear of choking. For the immediate term, see if he an

drink a diet protein drink like Ensure or a carnation instant breakfast. For the

longer term, I would still pursue the Pandas/strep part. Either go back and

request a 72 hour throat culture or two blood tests - an ASO titer test and an

Anti-DNase B titer test (this is less commonly ordered and you may need to push

for it). Both of these tests look for antibodies to strep (an ASO titer will

peak 1-3 weeks post-infection and the Anti-DNase B peaks at approx. 6 weeks post

infection)

There are a few members on the Latitudes forum (www.latitudes.org - then go to

the forums tab and select Pandas/Pitands) who are in Europe - at least one in

the UK. you may be able to get some " local " information there.

Also, Dr Dale is a Pandas researcher is in London - Department of

Neurology, Great Ormond Street Hospital NHS Trust and Institute of Child Health,

London, United Kingdom. R.Dale@...

You may be able to get help by contact him or his department.

Finally, if you are still stuck, especially with the autism thrown in, you may

want to consult with , who deals with both autism and Pandas in

Florida http://www.icdrc.org/index.html

I hope at least one of these helps,

>

> Hi,

>

> Just wanted to introduce myself and ask for some advice.

>

> I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

>

> The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual, but I am not sure whether this is

the trigger for this big episode. Other factors could be a cause such as major

stress within the family unit which has really impacted on me or maybe puberty,

I really don't know. As well as obsessional he is lethargic, dreamy and gagging

every time he eats...

>

> The latest obsession is asking my DH what videos he remembers from You Tube

(Callum has a fantastic memory for dates and events), this is amounting to 100's

of videos and he has been reciting these to DH all weekend, and getting anxious,

shaking and crying when we say that's enough. I've used behavioural techniques

before for the low level stuff, and ABC data to try and pinpoint the antecedent,

but trying these techniques with him now is causing him so much anxiety I am at

a loss as to what to do next.

>

> He was up virtually all night and I had to stay awake with him trying to stop

him waking my husband who had to go to work and needed the sleep after a whole

weekend of disruption.

>

> I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

>

> We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

>

> Many thanks,

> Elaine

>

[Guest guest]

> Gagging has been a symptom of several Pandas kids, some of whom have developed

severe anorexia due to a fear of choking. For the immediate term, see if he an

drink a diet protein drink like Ensure or a carnation instant breakfast. For the

longer term, I would still pursue the Pandas/strep part. Either go back and

request a 72 hour throat culture or two blood tests - an ASO titer test and an

Anti-DNase B titer test (this is less commonly ordered and you may need to push

for it). Both of these tests look for antibodies to strep (an ASO titer will

peak 1-3 weeks post-infection and the Anti-DNase B peaks at approx. 6 weeks post

infection)

>

>

>> thanks , this would have to be a specialist doctor over here, our GP's

are a nightmare to get to test for anything out of the mainstream - but that's

doable we have plenty over here I can get this done through.

>

> There are a few members on the Latitudes forum (www.latitudes.org - then go to

the forums tab and select Pandas/Pitands) who are in Europe - at least one in

the UK. you may be able to get some " local " information there.

>

>> great will do

>

> Also, Dr Dale is a Pandas researcher is in London - Department of

Neurology, Great Ormond Street Hospital NHS Trust and Institute of Child Health,

London, United Kingdom. R.Dale@...

> You may be able to get help by contact him or his department.

>

>> that's really useful - my RDI consultant works out of the Institiute of Child

Health as well so she will probably know him ....

>

> Finally, if you are still stuck, especially with the autism thrown in, you may

want to consult with , who deals with both autism and Pandas in

Florida http://www.icdrc.org/index.html

>

>> the lure of Florida sunshine, could certainly do with some at the moment;-) -

I shall keep this in mind ...

>

> I hope at least one of these helps,

>

>> yes that's all great info I relly appreciate it.

>

>

>

> >

> > Hi,

> >

> > Just wanted to introduce myself and ask for some advice.

> >

> > I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

> >

> > The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual, but I am not sure whether this is

the trigger for this big episode. Other factors could be a cause such as major

stress within the family unit which has really impacted on me or maybe puberty,

I really don't know. As well as obsessional he is lethargic, dreamy and gagging

every time he eats...

> >

> > The latest obsession is asking my DH what videos he remembers from You Tube

(Callum has a fantastic memory for dates and events), this is amounting to 100's

of videos and he has been reciting these to DH all weekend, and getting anxious,

shaking and crying when we say that's enough. I've used behavioural techniques

before for the low level stuff, and ABC data to try and pinpoint the antecedent,

but trying these techniques with him now is causing him so much anxiety I am at

a loss as to what to do next.

> >

> > He was up virtually all night and I had to stay awake with him trying to

stop him waking my husband who had to go to work and needed the sleep after a

whole weekend of disruption.

> >

> > I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

> >

> > We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

> >

> > Many thanks,

> > Elaine

> >

>

>

> checked for viruses and spam by CanIt.

> http://www.canit4.3d.net.uk/

[Guest guest]

Hi Elaine, I see you got some helpful contact info, hope it provides answers. I

second trying to get some nutritional liquids down if he can manage those. It's

scary when their eating gets affected. Keep us updated on how that goes.

I have a son, 21, with OCD and Aspergers. He also has a great memory, proves

useful in school or when I need to remember something - IF he's paying attention

to me when I ask him to remember something for me - he does seem distracted a

lot - maybe it's just all these years of listening to me, he's tuned me out! .

So he needs dad to answer those questions? Are dad's answers repetitive, same

thing over & over? Wondering if you had a typed list...could be updated some.

Or maybe limit how often he can ask dad, or limit how many dad can list in an

answer; or have a 20 minute time set aside each day for dad to answer (maybe

have to work on that, maybe 2 10-minute times to begin with at different times

during the day/evening) but something to work towards as a goal.

Of if it's just him reciting to dad - try the above reversed for your son to

have time to recite, break it up into periods during the day, working towards

less frequently.... Then maybe when you say " that's enough " he'll know he will

get a chance at the later scheduled time and will be a little less anxious....

Or have a limit too at each time, he can name XX videos, or make a game to see

how many (how fast) he can name them in the designated time.

Just brainstorming above. Get him to agree to try this, many find a reward

system helpful to motivate them (even just TRYING to do this earns a little

reward/sticker...).

Glad you found our group, keep us updated!

(North Carolina)

single mom, 3 sons

, 21, with OCD, Aspergers, dysgraphia

>

> Hi,

>

> Just wanted to introduce myself and ask for some advice.

>

> I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

>

> The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual,

[Guest guest]

Hi Chris

> Hi Elaine, I see you got some helpful contact info, hope it provides answers.

I second trying to get some nutritional liquids down if he can manage those.

It's scary when their eating gets affected. Keep us updated on how that goes.

>

> I have a son, 21, with OCD and Aspergers. He also has a great memory, proves

useful in school or when I need to remember something - IF he's paying attention

to me when I ask him to remember something for me - he does seem distracted a

lot - maybe it's just all these years of listening to me, he's tuned me out! .

>

>

>> Callum's memory is very selective - and we are still wondering where on earth

we can use this fantastic date ability to help him rather than hinder him

>

> So he needs dad to answer those questions? Are dad's answers repetitive, same

thing over & over? Wondering if you had a typed list...could be updated some. Or

maybe limit how often he can ask dad, or limit how many dad can list in an

answer; or have a 20 minute time set aside each day for dad to answer (maybe

have to work on that, maybe 2 10-minute times to begin with at different times

during the day/evening) but something to work towards as a goal.

>

>> Callum says " do you remember such and such video when blah blah happened " -

they are not the same questions, just videos that he remembers from years back.

>

> Of if it's just him reciting to dad - try the above reversed for your son to

have time to recite, break it up into periods during the day, working towards

less frequently.... Then maybe when you say " that's enough " he'll know he will

get a chance at the later scheduled time and will be a little less anxious....

Or have a limit too at each time, he can name XX videos, or make a game to see

how many (how fast) he can name them in the designated time.

>

>.> that's a great idea I'm really conscious of the anxiety and if we

break this cycle abruptly it will escalate - it's horrible to see such a happy,

funny little boy be so frightenend and confused.

>

> Just brainstorming above. Get him to agree to try this, many find a reward

system helpful to motivate them (even just TRYING to do this earns a little

reward/sticker...).

>

>> Yes, certificates are big motivators here

>

> Glad you found our group, keep us updated!

>

>> Me too, thanks again for all your help - I would like to find some OCD

parenting groups in the UK as well - so am on the search for that too...

>

> (North Carolina)

> single mom, 3 sons

> , 21, with OCD, Aspergers, dysgraphia

>

>

> >

> > Hi,

> >

> > Just wanted to introduce myself and ask for some advice.

> >

> > I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

> >

> > The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual,

>

>

> checked for viruses and spam by CanIt.

> http://www.canit4.3d.net.uk/

[Guest guest]

I haven't had a chance to read this yet, but there are several parents with

autism/pandas issues on the latitudes support forum (www.latitudes.org - go to

forums tab, then to Pandas/Pitands)

Someone posted this today and I thought it was timely.

http://ojs.lib.swin.edu.au/index.php/ejap/article/viewFile/152/175

PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with

Streptococcus) in Autism? A Case History

Hope it helps.

>

> Hi,

>

> Just wanted to introduce myself and ask for some advice.

>

> I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

>

> The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual, but I am not sure whether this is

the trigger for this big episode. Other factors could be a cause such as major

stress within the family unit which has really impacted on me or maybe puberty,

I really don't know. As well as obsessional he is lethargic, dreamy and gagging

every time he eats...

>

> The latest obsession is asking my DH what videos he remembers from You Tube

(Callum has a fantastic memory for dates and events), this is amounting to 100's

of videos and he has been reciting these to DH all weekend, and getting anxious,

shaking and crying when we say that's enough. I've used behavioural techniques

before for the low level stuff, and ABC data to try and pinpoint the antecedent,

but trying these techniques with him now is causing him so much anxiety I am at

a loss as to what to do next.

>

> He was up virtually all night and I had to stay awake with him trying to stop

him waking my husband who had to go to work and needed the sleep after a whole

weekend of disruption.

>

> I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

>

> We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

>

> Many thanks,

> Elaine

>

[Guest guest]

Hi ,

This is really usefull thanks; I am a big advocate of the specific carbohydrate

diet that is very similar to the 'prmitiive diet' they outline in this study.

Just for info, in a fairly recent study on the most effective interventions for

autism the SCD diet was ranked one of the highest.

Elaine

> I haven't had a chance to read this yet, but there are several parents with

autism/pandas issues on the latitudes support forum (www.latitudes.org - go to

forums tab, then to Pandas/Pitands)

>

> Someone posted this today and I thought it was timely.

> http://ojs.lib.swin.edu.au/index.php/ejap/article/viewFile/152/175

> PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with

> Streptococcus) in Autism? A Case History

>

> Hope it helps.

>

>

>

> >

> > Hi,

> >

> > Just wanted to introduce myself and ask for some advice.

> >

> > I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

> >

> > The last week has seen a drastic deterioration in our usually happy son, and

he has become more obsessional, anxious and lethargic - I did tell him that I

would not carry on with one particular ritual, but I am not sure whether this is

the trigger for this big episode. Other factors could be a cause such as major

stress within the family unit which has really impacted on me or maybe puberty,

I really don't know. As well as obsessional he is lethargic, dreamy and gagging

every time he eats...

> >

> > The latest obsession is asking my DH what videos he remembers from You Tube

(Callum has a fantastic memory for dates and events), this is amounting to 100's

of videos and he has been reciting these to DH all weekend, and getting anxious,

shaking and crying when we say that's enough. I've used behavioural techniques

before for the low level stuff, and ABC data to try and pinpoint the antecedent,

but trying these techniques with him now is causing him so much anxiety I am at

a loss as to what to do next.

> >

> > He was up virtually all night and I had to stay awake with him trying to

stop him waking my husband who had to go to work and needed the sleep after a

whole weekend of disruption.

> >

> > I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

> >

> > We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

> >

> > Many thanks,

> > Elaine

> >

>

>

> checked for viruses and spam by CanIt.

> http://www.canit4.3d.net.uk/

[Guest guest]

Elaine,

Should have mentioned - the gagging you're seeing - is it leading to food

refusal or does he gag all the time, not just at meals?

Gagging with food could be an OCD fear of choking - something to watch carefully

as it can become a serious health risk quickly.

Gagging all the time could be from phlegm associated with a sinus infection

(which can be a place for strep). Many pediatricians are reluctant to do a nose

swab, thinking that if there's strep, it will drain to the throat and result in

strep throat. That's not always the case. In the US, it's much easier to get an

allergist/immunologist or ENT to diagnose a sinus infection than it is to get a

pediatrician to do it. I'm sorry I don't understand the medical system in the

UK. But since you've seen a similar pattern in the past with strep, you may want

to keep pursuing.

Also, Dale is a Pandas researcher in London. I believe he's strictly a

researcher and not a clinician, but he may be able to refer you to a doctor who

can help. There was someone else on this forum the other day from the UK (or was

it you?) who was looking for Pandas doctors in the UK. Perhaps the two of you

may be able to share your doctor info. Dr Dale's contact info is Neurosciences

Unit, Institute of Child Health and Great Ormond Street Hospital for Children

NHS Trust, London, UK. Email: R.Dale@...

Best wishes,

> > >

> > > Hi,

> > >

> > > Just wanted to introduce myself and ask for some advice.

> > >

> > > I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

> > >

> > > The last week has seen a drastic deterioration in our usually happy son,

and he has become more obsessional, anxious and lethargic - I did tell him that

I would not carry on with one particular ritual, but I am not sure whether this

is the trigger for this big episode. Other factors could be a cause such as

major stress within the family unit which has really impacted on me or maybe

puberty, I really don't know. As well as obsessional he is lethargic, dreamy and

gagging every time he eats...

> > >

> > > The latest obsession is asking my DH what videos he remembers from You

Tube (Callum has a fantastic memory for dates and events), this is amounting to

100's of videos and he has been reciting these to DH all weekend, and getting

anxious, shaking and crying when we say that's enough. I've used behavioural

techniques before for the low level stuff, and ABC data to try and pinpoint the

antecedent, but trying these techniques with him now is causing him so much

anxiety I am at a loss as to what to do next.

> > >

> > > He was up virtually all night and I had to stay awake with him trying to

stop him waking my husband who had to go to work and needed the sleep after a

whole weekend of disruption.

> > >

> > > I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

> > >

> > > We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

> > >

> > > Many thanks,

> > > Elaine

> > >

> >

> >

> > checked for viruses and spam by CanIt.

> > http://www.canit4.3d.net.uk/

>

>

>

>

[Guest guest]

Thanks ,, this is just at meal times - but he has a long history of food

faddiness, and was still eating baby food at 5 years - he has progressed a great

deal from then...

Also, Callum has a continually blocked but strangely runny nose - I was thinking

allergies to something - or maybe as you say strep related.

I would be really interested in talking to - I also use the IOCH for my

educational consultant. I've tried the email you previously sent and this one

but they've both bounced back?

I think I am the same person on your list !! - I am searching for UK contacts

too, so thanks for the other links really appreciate it.

Elaine

> Elaine,

> Should have mentioned - the gagging you're seeing - is it leading to food

refusal or does he gag all the time, not just at meals?

>

> Gagging with food could be an OCD fear of choking - something to watch

carefully as it can become a serious health risk quickly.

>

> Gagging all the time could be from phlegm associated with a sinus infection

(which can be a place for strep). Many pediatricians are reluctant to do a nose

swab, thinking that if there's strep, it will drain to the throat and result in

strep throat. That's not always the case. In the US, it's much easier to get an

allergist/immunologist or ENT to diagnose a sinus infection than it is to get a

pediatrician to do it. I'm sorry I don't understand the medical system in the

UK. But since you've seen a similar pattern in the past with strep, you may want

to keep pursuing.

>

> Also, Dale is a Pandas researcher in London. I believe he's strictly a

researcher and not a clinician, but he may be able to refer you to a doctor who

can help. There was someone else on this forum the other day from the UK (or was

it you?) who was looking for Pandas doctors in the UK. Perhaps the two of you

may be able to share your doctor info. Dr Dale's contact info is Neurosciences

Unit, Institute of Child Health and Great Ormond Street Hospital for Children

NHS Trust, London, UK. Email: R.Dale@...

>

> Best wishes,

>

>

>

> > > >

> > > > Hi,

> > > >

> > > > Just wanted to introduce myself and ask for some advice.

> > > >

> > > > I have an 11 year old with ASD, who has always exhibited low level OCD -

mainly in the form of continuous affirmation of questions to either myself or

DH.

> > > >

> > > > The last week has seen a drastic deterioration in our usually happy son,

and he has become more obsessional, anxious and lethargic - I did tell him that

I would not carry on with one particular ritual, but I am not sure whether this

is the trigger for this big episode. Other factors could be a cause such as

major stress within the family unit which has really impacted on me or maybe

puberty, I really don't know. As well as obsessional he is lethargic, dreamy and

gagging every time he eats...

> > > >

> > > > The latest obsession is asking my DH what videos he remembers from You

Tube (Callum has a fantastic memory for dates and events), this is amounting to

100's of videos and he has been reciting these to DH all weekend, and getting

anxious, shaking and crying when we say that's enough. I've used behavioural

techniques before for the low level stuff, and ABC data to try and pinpoint the

antecedent, but trying these techniques with him now is causing him so much

anxiety I am at a loss as to what to do next.

> > > >

> > > > He was up virtually all night and I had to stay awake with him trying to

stop him waking my husband who had to go to work and needed the sleep after a

whole weekend of disruption.

> > > >

> > > > I'd really appreciate some advice - I've just come back from the doctors

thinking maybe the cause is strep (he's had this before showing increased OCD

during that time), Dr says his throat is clear, but I am wondering why he is

gagging so much, he didn't take a throat culture?

> > > >

> > > > We're in the UK, so are probably way behind in any research or forward

thinking on PANDAS.

> > > >

> > > > Many thanks,

> > > > Elaine

> > > >

> > >

> > >

> > > checked for viruses and spam by CanIt.

> > > http://www.canit4.3d.net.uk/

> >

> >

> >

> >