Re: Neuro AutonomicDisturbances

[Guest guest]

> What if autism is found for some to be an endocrine disorder? But some of you

here have said that for years anyhow!!

This seems to be the case for my daughter. Not sure exactly what is going on

yet, but, she is on a range of hormones and is doing amazing, especially with

eye contact, empathy, awareness etc.

This is all very interesting and when I was reading about postural hypotension

etc. my immediate thought was what about hormones and the hypothalamus and

pituitary gland.

We are waiting for Dr Goyal's thoughts on this for my daughter.

[Guest guest]

> What if autism is found for some to be an endocrine disorder? But some of you

here have said that for years anyhow!!

This seems to be the case for my daughter. Not sure exactly what is going on

yet, but, she is on a range of hormones and is doing amazing, especially with

eye contact, empathy, awareness etc.

This is all very interesting and when I was reading about postural hypotension

etc. my immediate thought was what about hormones and the hypothalamus and

pituitary gland.

We are waiting for Dr Goyal's thoughts on this for my daughter.

[Guest guest]

I think my mum has electronic one from chemist...I will ask her. But I don't

think BP problem as I would notice him falling esp getting up fast.

Is Sam's BP being done different times of day? Should try and ensure he sits for

10 minutes and relaxes before BP. It is the bottom reading I would be more

interested in though and there is some variation their....upto 10 ok but 15-20

is difference? Is same machine/cuff used each time also?

You need to ask them to check it sitting and then reflate it and ask Sam to

stand whilst they measure again...this will show drops in BP.

> > >

> > >

> > > From: is Green <alexis.atrekkie22@>

> > > Subject: Re: Neuro AutonomicDisturbances

> > > To: _Autism-Biomedical-Europe _

> (mailto:Autism-Biomedical-Europe )

> > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>

> > > Date: Wednesday, 7 December, 2011, 18:16

> > >

> > >

> > >

> > > Â

> > >

> > >

> > >

> > > i haven't been diagnosed with POTS but my autistic friend suspects he

> has.

> > >

> > > --

> > > is

> > >

> >

>

[Guest guest]

I think my mum has electronic one from chemist...I will ask her. But I don't

think BP problem as I would notice him falling esp getting up fast.

Is Sam's BP being done different times of day? Should try and ensure he sits for

10 minutes and relaxes before BP. It is the bottom reading I would be more

interested in though and there is some variation their....upto 10 ok but 15-20

is difference? Is same machine/cuff used each time also?

You need to ask them to check it sitting and then reflate it and ask Sam to

stand whilst they measure again...this will show drops in BP.

> > >

> > >

> > > From: is Green <alexis.atrekkie22@>

> > > Subject: Re: Neuro AutonomicDisturbances

> > > To: _Autism-Biomedical-Europe _

> (mailto:Autism-Biomedical-Europe )

> > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>

> > > Date: Wednesday, 7 December, 2011, 18:16

> > >

> > >

> > >

> > > Â

> > >

> > >

> > >

> > > i haven't been diagnosed with POTS but my autistic friend suspects he

> has.

> > >

> > > --

> > > is

> > >

> >

>

[Guest guest]

hypotham is HUGE issue for ds temp control etc

That is very interesting I have read about steroids also having similar

effects....but not heard of hormones!! V interesting!!

>

>

>

> > What if autism is found for some to be an endocrine disorder? But some of

you here have said that for years anyhow!!

>

> This seems to be the case for my daughter. Not sure exactly what is going on

yet, but, she is on a range of hormones and is doing amazing, especially with

eye contact, empathy, awareness etc.

>

> This is all very interesting and when I was reading about postural hypotension

etc. my immediate thought was what about hormones and the hypothalamus and

pituitary gland.

>

> We are waiting for Dr Goyal's thoughts on this for my daughter.

>

>

>

[Guest guest]

I don;t generally have postural hypotension but I know I have issues with Hypothallamus and Pituitary from reflexology, when I was going every week I lost weight eating more. Then I broke my toe and was not fit for treatment for 8 weeks and the weight is creeping up............... Has your lass lost weight since treatment?

Mandi x

This is all very interesting and when I was reading about postural hypotension etc. my immediate thought was what about hormones and the hypothalamus and pituitary gland.

[Guest guest]

I don;t generally have postural hypotension but I know I have issues with Hypothallamus and Pituitary from reflexology, when I was going every week I lost weight eating more. Then I broke my toe and was not fit for treatment for 8 weeks and the weight is creeping up............... Has your lass lost weight since treatment?

Mandi x

This is all very interesting and when I was reading about postural hypotension etc. my immediate thought was what about hormones and the hypothalamus and pituitary gland.

[Guest guest]

I know without asking its the same nurse with same equip and she would do it after he's been sitting but I don;t think they have done the sit/stand thing, I'll ask them if he is still over the show on this weeks readings

Mx

Is Sam's BP being done different times of day? Should try and ensure he sits for 10 minutes and relaxes before BP. It is the bottom reading I would be more interested in though and there is some variation their....upto 10 ok but 15-20 is difference? Is same machine/cuff used each time also?You need to ask them to check it sitting and then reflate it and ask Sam to stand whilst they measure again...this will show drops in BP.

[Guest guest]

I know without asking its the same nurse with same equip and she would do it after he's been sitting but I don;t think they have done the sit/stand thing, I'll ask them if he is still over the show on this weeks readings

Mx

Is Sam's BP being done different times of day? Should try and ensure he sits for 10 minutes and relaxes before BP. It is the bottom reading I would be more interested in though and there is some variation their....upto 10 ok but 15-20 is difference? Is same machine/cuff used each time also?You need to ask them to check it sitting and then reflate it and ask Sam to stand whilst they measure again...this will show drops in BP.

[Guest guest]

SHe did say they had electric but I asked them to use ordinary cuff, he likes deep pressure

Mx

I think my mum has electronic one from chemist...I will ask her. But I don't think BP problem as I would notice him falling esp getting up fast.Is Sam's BP being done different times of day? Should try and ensure he sits for 10 minutes and relaxes before BP. It is the bottom reading I would be more interested in though and there is some variation their....upto 10 ok but 15-20 is difference? Is same machine/cuff used each time also?You need to ask them to check it sitting and then reflate it and ask Sam to stand whilst they measure again...this will show drops in BP.> > > > > > > > > From: is Green <alexis.atrekkie22@>> > > Subject: Re: Neuro AutonomicDisturbances> > > To: _Autism-Biomedical-Europe _ > (mailto:Autism-Biomedical-Europe ) > > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>> > > Date: Wednesday, 7 December, 2011, 18:16> > > > > > > > > > > > Â > > > > > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he > has.> > > > > > -- > > > is> > >> >>

[Guest guest]

SHe did say they had electric but I asked them to use ordinary cuff, he likes deep pressure

Mx

I think my mum has electronic one from chemist...I will ask her. But I don't think BP problem as I would notice him falling esp getting up fast.Is Sam's BP being done different times of day? Should try and ensure he sits for 10 minutes and relaxes before BP. It is the bottom reading I would be more interested in though and there is some variation their....upto 10 ok but 15-20 is difference? Is same machine/cuff used each time also?You need to ask them to check it sitting and then reflate it and ask Sam to stand whilst they measure again...this will show drops in BP.> > > > > > > > > From: is Green <alexis.atrekkie22@>> > > Subject: Re: Neuro AutonomicDisturbances> > > To: _Autism-Biomedical-Europe _ > (mailto:Autism-Biomedical-Europe ) > > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>> > > Date: Wednesday, 7 December, 2011, 18:16> > > > > > > > > > > > Â > > > > > > > > > > > > i haven't been diagnosed with POTS but my autistic friend suspects he > has.> > > > > > -- > > > is> > >> >>

[Guest guest]

Hi Mandi,

No she hasn't which is very frustrating. She hasn't put any on though and she

has grown a couple of inches since she started the hormones, and her body shape

has changed slightly, so she does look slimmer. I have been told that the

truncal obesity is likely to be growth hormone deficiency - I would love to

trial her on this, but, need a prescription which I can't get at the moment.

Even though she is growing in height, she may still not have enough Growth

hormone for the rest of her body - so my research is telling me!

Sorry about your toe - hope that it is better now. Interesting about the

reflexology showing hypothalamus and pituitary issues. Good about the weight

loss!

M x

>

> I don;t generally have postural hypotension but I know I have issues with

> Hypothallamus and Pituitary from reflexology, when I was going every week I

> lost weight eating more. Then I broke my toe and was not fit for treatment

> for 8 weeks and the weight is creeping up............... Has your lass

> lost weight since treatment?

>

> Mandi x

>

>

> In a message dated 09/12/2011 00:00:00 GMT Standard Time,

> m.kidson60@... writes:

>

> This is all very interesting and when I was reading about postural

> hypotension etc. my immediate thought was what about hormones and the

hypothalamus

> and pituitary gland.

>

[Guest guest]

I am writing to just share my ds experience so far. Ds returned in December for

a repeat Autonomic test. After the test spoke with Dr G. It was excellent news!

Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier

tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.

The neurologist picked up ds had very low vit D. Dr G wondered if a type of

hormone that effects VitD had something to do with it but then stated the HBOT

ds is having and the LDN boosting the immune system also and the ketotofin

increasing mass cells may have all played a part...what ever the cause it is now

normal and oxygen levels are at 72....which is spot on normal with weekly HBOT,

dread if I reduce it!

Sadly though ds had nutritional blood tests done as is extremely deficent in

many vits and minerals, including cholestoral which was 2.7. Ds has been on this

supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the

holidays and I can only do the 9 days out of 21 days as it upsets his stomach.

Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.

Dr G thought a 'viral' cause may be the problem and all viral bloods have proven

negative so far (measels, herpes, CMV).

Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I

am however more interested to see if ds has CFS or an immunine disorder of some

kind? But that is another visit to Dr G!

Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full

gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten

free for 4 years but the 'trial' gluten in December I took photos of ds

face...gets blisters up nose too, not very nice!

I gave ds the test dose of Propanolol but felt it made ds very drunk like and

cognitive ability reduced, so we have given that a miss.

Anyway will update in next few months when I get more results.

>

> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

reassess this month (3 months since starting Ketotifen). The result was quite

marked and by the effects of the medication it is likely to be viral related. So

will return for another autonomic test this month to see if Ketotifin has

sabalized the disturbance if not try viral route.

> I took Dr G letter to Neurologist who also did ECG which result shows Neuro

Autonomic Disturbances and wants ds to have bloods and urine tests this week.

>

> Does anyone here have a child with Neuro Autonomic Disturbances and what

diagnosis, symptoms and most important treatment and prognosis their is?

>

> Thank you in advance.

>

[Guest guest]

I am writing to just share my ds experience so far. Ds returned in December for

a repeat Autonomic test. After the test spoke with Dr G. It was excellent news!

Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier

tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.

The neurologist picked up ds had very low vit D. Dr G wondered if a type of

hormone that effects VitD had something to do with it but then stated the HBOT

ds is having and the LDN boosting the immune system also and the ketotofin

increasing mass cells may have all played a part...what ever the cause it is now

normal and oxygen levels are at 72....which is spot on normal with weekly HBOT,

dread if I reduce it!

Sadly though ds had nutritional blood tests done as is extremely deficent in

many vits and minerals, including cholestoral which was 2.7. Ds has been on this

supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the

holidays and I can only do the 9 days out of 21 days as it upsets his stomach.

Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.

Dr G thought a 'viral' cause may be the problem and all viral bloods have proven

negative so far (measels, herpes, CMV).

Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I

am however more interested to see if ds has CFS or an immunine disorder of some

kind? But that is another visit to Dr G!

Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full

gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten

free for 4 years but the 'trial' gluten in December I took photos of ds

face...gets blisters up nose too, not very nice!

I gave ds the test dose of Propanolol but felt it made ds very drunk like and

cognitive ability reduced, so we have given that a miss.

Anyway will update in next few months when I get more results.

>

> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

reassess this month (3 months since starting Ketotifen). The result was quite

marked and by the effects of the medication it is likely to be viral related. So

will return for another autonomic test this month to see if Ketotifin has

sabalized the disturbance if not try viral route.

> I took Dr G letter to Neurologist who also did ECG which result shows Neuro

Autonomic Disturbances and wants ds to have bloods and urine tests this week.

>

> Does anyone here have a child with Neuro Autonomic Disturbances and what

diagnosis, symptoms and most important treatment and prognosis their is?

>

> Thank you in advance.

>

[Guest guest]

I am writing to just share my ds experience so far. Ds returned in December for

a repeat Autonomic test. After the test spoke with Dr G. It was excellent news!

Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier

tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.

The neurologist picked up ds had very low vit D. Dr G wondered if a type of

hormone that effects VitD had something to do with it but then stated the HBOT

ds is having and the LDN boosting the immune system also and the ketotofin

increasing mass cells may have all played a part...what ever the cause it is now

normal and oxygen levels are at 72....which is spot on normal with weekly HBOT,

dread if I reduce it!

Sadly though ds had nutritional blood tests done as is extremely deficent in

many vits and minerals, including cholestoral which was 2.7. Ds has been on this

supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the

holidays and I can only do the 9 days out of 21 days as it upsets his stomach.

Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.

Dr G thought a 'viral' cause may be the problem and all viral bloods have proven

negative so far (measels, herpes, CMV).

Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I

am however more interested to see if ds has CFS or an immunine disorder of some

kind? But that is another visit to Dr G!

Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full

gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten

free for 4 years but the 'trial' gluten in December I took photos of ds

face...gets blisters up nose too, not very nice!

I gave ds the test dose of Propanolol but felt it made ds very drunk like and

cognitive ability reduced, so we have given that a miss.

Anyway will update in next few months when I get more results.

>

> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

reassess this month (3 months since starting Ketotifen). The result was quite

marked and by the effects of the medication it is likely to be viral related. So

will return for another autonomic test this month to see if Ketotifin has

sabalized the disturbance if not try viral route.

> I took Dr G letter to Neurologist who also did ECG which result shows Neuro

Autonomic Disturbances and wants ds to have bloods and urine tests this week.

>

> Does anyone here have a child with Neuro Autonomic Disturbances and what

diagnosis, symptoms and most important treatment and prognosis their is?

>

> Thank you in advance.

>

[Guest guest]

How is your son? (I mean regardless of test results) Is he better?

Mandi x

I am writing to just share my ds experience so far. Ds returned in December for a repeat Autonomic test. After the test spoke with Dr G. It was excellent news! Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.The neurologist picked up ds had very low vit D. Dr G wondered if a type of hormone that effects VitD had something to do with it but then stated the HBOT ds is having and the LDN boosting the immune system also and the ketotofin increasing mass cells may have all played a part...what ever the cause it is now normal and oxygen levels are at 72....which is spot on normal with weekly HBOT, dread if I reduce it!Sadly though ds had nutritional blood tests done as is extremely deficent in many vits and minerals, including cholestoral which was 2.7. Ds has been on this supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the holidays and I can only do the 9 days out of 21 days as it upsets his stomach. Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.Dr G thought a 'viral' cause may be the problem and all viral bloods have proven negative so far (measels, herpes, CMV).Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I am however more interested to see if ds has CFS or an immunine disorder of some kind? But that is another visit to Dr G!Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten free for 4 years but the 'trial' gluten in December I took photos of ds face...gets blisters up nose too, not very nice!I gave ds the test dose of Propanolol but felt it made ds very drunk like and cognitive ability reduced, so we have given that a miss.Anyway will update in next few months when I get more results.>> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will reassess this month (3 months since starting Ketotifen). The result was quite marked and by the effects of the medication it is likely to be viral related. So will return for another autonomic test this month to see if Ketotifin has sabalized the disturbance if not try viral route.> I took Dr G letter to Neurologist who also did ECG which result shows Neuro Autonomic Disturbances and wants ds to have bloods and urine tests this week.> > Does anyone here have a child with Neuro Autonomic Disturbances and what diagnosis, symptoms and most important treatment and prognosis their is?> > Thank you in advance.>

[Guest guest]

Thanks for the update. Curious what the trial dose of propranolol was?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 18:44:36 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

I am writing to just share my ds experience so far. Ds returned in December for a repeat Autonomic test. After the test spoke with Dr G. It was excellent news! Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.

The neurologist picked up ds had very low vit D. Dr G wondered if a type of hormone that effects VitD had something to do with it but then stated the HBOT ds is having and the LDN boosting the immune system also and the ketotofin increasing mass cells may have all played a part...what ever the cause it is now normal and oxygen levels are at 72....which is spot on normal with weekly HBOT, dread if I reduce it!

Sadly though ds had nutritional blood tests done as is extremely deficent in many vits and minerals, including cholestoral which was 2.7. Ds has been on this supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the holidays and I can only do the 9 days out of 21 days as it upsets his stomach. Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.

Dr G thought a 'viral' cause may be the problem and all viral bloods have proven negative so far (measels, herpes, CMV).

Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I am however more interested to see if ds has CFS or an immunine disorder of some kind? But that is another visit to Dr G!

Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten free for 4 years but the 'trial' gluten in December I took photos of ds face...gets blisters up nose too, not very nice!

I gave ds the test dose of Propanolol but felt it made ds very drunk like and cognitive ability reduced, so we have given that a miss.

Anyway will update in next few months when I get more results.

>

> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will reassess this month (3 months since starting Ketotifen). The result was quite marked and by the effects of the medication it is likely to be viral related. So will return for another autonomic test this month to see if Ketotifin has sabalized the disturbance if not try viral route.

> I took Dr G letter to Neurologist who also did ECG which result shows Neuro Autonomic Disturbances and wants ds to have bloods and urine tests this week.

>

> Does anyone here have a child with Neuro Autonomic Disturbances and what diagnosis, symptoms and most important treatment and prognosis their is?

>

> Thank you in advance.

>

[Guest guest]

Thanks for the update. Curious what the trial dose of propranolol was?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 20 Feb 2012 18:44:36 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: Neuro AutonomicDisturbances

I am writing to just share my ds experience so far. Ds returned in December for a repeat Autonomic test. After the test spoke with Dr G. It was excellent news! Ds autonomic test was normal. Dr G not quite sure why considering the 2 earlier tests 1 at BS in Sept and by NHS Neurologist in Oct showed 'disturbances'.

The neurologist picked up ds had very low vit D. Dr G wondered if a type of hormone that effects VitD had something to do with it but then stated the HBOT ds is having and the LDN boosting the immune system also and the ketotofin increasing mass cells may have all played a part...what ever the cause it is now normal and oxygen levels are at 72....which is spot on normal with weekly HBOT, dread if I reduce it!

Sadly though ds had nutritional blood tests done as is extremely deficent in many vits and minerals, including cholestoral which was 2.7. Ds has been on this supplement now 4 weeks, I have not really seen anything. Ds was on Iron over the holidays and I can only do the 9 days out of 21 days as it upsets his stomach. Vit A< B1,B2,B6,C,D introduced today and will add zinc and vit E when they come.

Dr G thought a 'viral' cause may be the problem and all viral bloods have proven negative so far (measels, herpes, CMV).

Consultant Paed will do all bloods in 2-3 months and also do glandular fever...I am however more interested to see if ds has CFS or an immunine disorder of some kind? But that is another visit to Dr G!

Consultant Paed has confirmed ds has a gluten demetitis and I will give ds full gluten at Easter to have gluten tests again. A bit nervous as ds has been gluten free for 4 years but the 'trial' gluten in December I took photos of ds face...gets blisters up nose too, not very nice!

I gave ds the test dose of Propanolol but felt it made ds very drunk like and cognitive ability reduced, so we have given that a miss.

Anyway will update in next few months when I get more results.

>

> Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will reassess this month (3 months since starting Ketotifen). The result was quite marked and by the effects of the medication it is likely to be viral related. So will return for another autonomic test this month to see if Ketotifin has sabalized the disturbance if not try viral route.

> I took Dr G letter to Neurologist who also did ECG which result shows Neuro Autonomic Disturbances and wants ds to have bloods and urine tests this week.

>

> Does anyone here have a child with Neuro Autonomic Disturbances and what diagnosis, symptoms and most important treatment and prognosis their is?

>

> Thank you in advance.

>

[Guest guest]

Hi Mandi,

The results I have seen is down to HBOT - more language and more switched on

socially. Also his gross motor skills have improved slightly.

He has started to eat veggies for the first time (ok hidden in soup but even

soup and meat has steak most nights now to help increase iron) so diet is

becoming more open!

The LDN stopped him giggling constantly and became calm.

However 'physical stamina' and 'get up and go' he remains exhausted! Like CFS

basically! He can do 15 mins in park then exhausted and needs to literally lye

on his back!

His lactate levels also returned to normal (forgot to mention). They were

slightly abnormal 6 months earlier. He had markers for slight mito dysfunction.

I can't say it has effected his 'cognitive' or 'behaviour' as these were okish

because of ABA anyway.

I guess the restricted diet and gut issues due to the MMR has taken it's toll? I

don't know!

Vit D was extremely low which was worrying.

He seems more grown up too in emotionally and slightly more social (but this

last factor could be school also).

Sorry that is not clear is it!

> >

> > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and

> will reassess this month (3 months since starting Ketotifen). The result was

> quite marked and by the effects of the medication it is likely to be viral

> related. So will return for another autonomic test this month to see if

> Ketotifin has sabalized the disturbance if not try viral route.

> > I took Dr G letter to Neurologist who also did ECG which result shows

> Neuro Autonomic Disturbances and wants ds to have bloods and urine tests this

> week.

> >

> > Does anyone here have a child with Neuro Autonomic Disturbances and what

> diagnosis, symptoms and most important treatment and prognosis their is?

> >

> > Thank you in advance.

> >

>

[Guest guest]

Hi Mandi,

The results I have seen is down to HBOT - more language and more switched on

socially. Also his gross motor skills have improved slightly.

He has started to eat veggies for the first time (ok hidden in soup but even

soup and meat has steak most nights now to help increase iron) so diet is

becoming more open!

The LDN stopped him giggling constantly and became calm.

However 'physical stamina' and 'get up and go' he remains exhausted! Like CFS

basically! He can do 15 mins in park then exhausted and needs to literally lye

on his back!

His lactate levels also returned to normal (forgot to mention). They were

slightly abnormal 6 months earlier. He had markers for slight mito dysfunction.

I can't say it has effected his 'cognitive' or 'behaviour' as these were okish

because of ABA anyway.

I guess the restricted diet and gut issues due to the MMR has taken it's toll? I

don't know!

Vit D was extremely low which was worrying.

He seems more grown up too in emotionally and slightly more social (but this

last factor could be school also).

Sorry that is not clear is it!

> >

> > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and

> will reassess this month (3 months since starting Ketotifen). The result was

> quite marked and by the effects of the medication it is likely to be viral

> related. So will return for another autonomic test this month to see if

> Ketotifin has sabalized the disturbance if not try viral route.

> > I took Dr G letter to Neurologist who also did ECG which result shows

> Neuro Autonomic Disturbances and wants ds to have bloods and urine tests this

> week.

> >

> > Does anyone here have a child with Neuro Autonomic Disturbances and what

> diagnosis, symptoms and most important treatment and prognosis their is?

> >

> > Thank you in advance.

> >

>

[Guest guest]

40mg and I gave him lots of difficult maths to do which he was slower once

medicated and hardly spoke...where I thought it would make him calm enough to

speak.

I also tried 20mg and again I felt the medication would have more deficits than

benifits esp slowing down cognitive function for school.

I think giving it on a need be basis for events that a child finds extremely

stressful now and again yes, but as I had asthma as a child I decided also the

risks not worth it incase ds has it too underlying.

> >

> > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

> reassess this month (3 months since starting Ketotifen). The result was quite

> marked and by the effects of the medication it is likely to be viral related.

So

> will return for another autonomic test this month to see if Ketotifin has

> sabalized the disturbance if not try viral route.

> > I took Dr G letter to Neurologist who also did ECG which result shows Neuro

> Autonomic Disturbances and wants ds to have bloods and urine tests this week.

> >

> > Does anyone here have a child with Neuro Autonomic Disturbances and what

> diagnosis, symptoms and most important treatment and prognosis their is?

> >

> > Thank you in advance.

> >

>

[Guest guest]

40mg and I gave him lots of difficult maths to do which he was slower once

medicated and hardly spoke...where I thought it would make him calm enough to

speak.

I also tried 20mg and again I felt the medication would have more deficits than

benifits esp slowing down cognitive function for school.

I think giving it on a need be basis for events that a child finds extremely

stressful now and again yes, but as I had asthma as a child I decided also the

risks not worth it incase ds has it too underlying.

> >

> > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

> reassess this month (3 months since starting Ketotifen). The result was quite

> marked and by the effects of the medication it is likely to be viral related.

So

> will return for another autonomic test this month to see if Ketotifin has

> sabalized the disturbance if not try viral route.

> > I took Dr G letter to Neurologist who also did ECG which result shows Neuro

> Autonomic Disturbances and wants ds to have bloods and urine tests this week.

> >

> > Does anyone here have a child with Neuro Autonomic Disturbances and what

> diagnosis, symptoms and most important treatment and prognosis their is?

> >

> > Thank you in advance.

> >

>

[Guest guest]

40mg and I gave him lots of difficult maths to do which he was slower once

medicated and hardly spoke...where I thought it would make him calm enough to

speak.

I also tried 20mg and again I felt the medication would have more deficits than

benifits esp slowing down cognitive function for school.

I think giving it on a need be basis for events that a child finds extremely

stressful now and again yes, but as I had asthma as a child I decided also the

risks not worth it incase ds has it too underlying.

> >

> > Dr G did an Autonomic test on ds 7yrs old. He prescribed Ketotifen and will

> reassess this month (3 months since starting Ketotifen). The result was quite

> marked and by the effects of the medication it is likely to be viral related.

So

> will return for another autonomic test this month to see if Ketotifin has

> sabalized the disturbance if not try viral route.

> > I took Dr G letter to Neurologist who also did ECG which result shows Neuro

> Autonomic Disturbances and wants ds to have bloods and urine tests this week.

> >

> > Does anyone here have a child with Neuro Autonomic Disturbances and what

> diagnosis, symptoms and most important treatment and prognosis their is?

> >

> > Thank you in advance.

> >

>

[Guest guest]

Clear that he is making improvements, who cares how but low stamina is a shame

Hang in there!

Mx

Sorry that is not clear is it!

[Guest guest]

Clear that he is making improvements, who cares how but low stamina is a shame

Hang in there!

Mx

Sorry that is not clear is it!