Re: Neuro AutonomicDisturbances -

[Guest guest]

Hi ,

You've said that "The lack of hormones explain why she couldn't cope with TST, even though ithelped." Hope you don't mind me asking what you mean by this?

I'm curious as ds too couldn't cope with TST and was a real battle to keep the excercises going. He is also very lethargic and is always tired, used to have more energy up until around 5yrs old and from then on just kept going downhill with energy levels. What has been difficult in our case is that most doctors will put his low energy levels down to his epilepsy and will not care to look into it, so feel the epilepsy is used as a scapegoat. I have known other children with similar forms of epilepsy to my ds and they don't seem to suffer from this continuous lethargy.... deep down I feel some connection with hormones. When he had a lumbar puncture last year, looking at glutamate levels, P5P etc they found high Prolactin levels but don't think any other hormones were looked at.

Would you by any chance know anything about the hormone prolactin?

emily x

> > > > > > >> > > > > > > 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 ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland.

There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to

include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest

that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary

gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get

big improvements in breathing etc. she continued to put weight on and suffered

terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy

levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little

cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr

urinary free cortisol tests - they all came back at the very bottom of the

range.

Interestingly, thryoid panel test results suggested that her thyroid function

was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day,

couldn't walk anywhere, couldn't take part in any physical activity and her

brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was

suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline

- she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen

levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and

that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book -

the migraines disappeared within an hour or so of taking the first dose and have

never come back. Her energy levels rocketed. She is now on 10mg in the morning

and 5mg for the other 3 doses. However, I stress dose her if she is going to be

doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in

spite of normal tests results she is now on 3 grains of NDT a day and this is

giving her more energy. It has only been by ensuring that her adrenals are fully

supported that the thyroid deficiencies have become clear. I don't think that

yet she is fully optimised - I have heard that it can take a year to get to a

proper dose of thyroid hormone. Since starting the thyroid hormone (last

October) she has grown 4 inches at least and is still growing. At long last her

body shape is improving and she can tolerate exercise and is now doing muscle

building exercises which she couldn't do before. She is so pleased that at long

last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the

light sensitivity (we have oestrogen receptors in the eyes + a whole load of

other things!

My daugher originally looked as though she had Cushing's - she has truncal

obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical

professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very

long time - probably since just after birth. Once her body needed more thryoid

hormone at about 6 or 7 years of age, she couldn't produce it. The body produced

more cortisol as a result, leading to something called pregnenolone stealing.

This lead to further hormones imbalances preventing the production of FSH and LH

and affecting neurotransmitter balance in the brain. Pregnenolone plays a big

role in balancing the neurotransmitteres - this lead to sleep disturbances etc.

Eventually she got to a stage where she was producing very little cortisol,

hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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]

Can I just come in on discussion and ask where you managed to have appropriate tests done? Did you also have to supplement DHEA and/or aldotesterone? Janet To: Autism-Biomedical-Europe From: m.kidson60@...Date: Wed, 22 Feb 2012 09:43:28 +0000Subject: Re: Neuro AutonomicDisturbances -

Hi ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland. There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get big improvements in breathing etc. she continued to put weight on and suffered terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr urinary free cortisol tests - they all came back at the very bottom of the range.

Interestingly, thryoid panel test results suggested that her thyroid function was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day, couldn't walk anywhere, couldn't take part in any physical activity and her brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline - she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book - the migraines disappeared within an hour or so of taking the first dose and have never come back. Her energy levels rocketed. She is now on 10mg in the morning and 5mg for the other 3 doses. However, I stress dose her if she is going to be doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in spite of normal tests results she is now on 3 grains of NDT a day and this is giving her more energy. It has only been by ensuring that her adrenals are fully supported that the thyroid deficiencies have become clear. I don't think that yet she is fully optimised - I have heard that it can take a year to get to a proper dose of thyroid hormone. Since starting the thyroid hormone (last October) she has grown 4 inches at least and is still growing. At long last her body shape is improving and she can tolerate exercise and is now doing muscle building exercises which she couldn't do before. She is so pleased that at long last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the light sensitivity (we have oestrogen receptors in the eyes + a whole load of other things!

My daugher originally looked as though she had Cushing's - she has truncal obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very long time - probably since just after birth. Once her body needed more thryoid hormone at about 6 or 7 years of age, she couldn't produce it. The body produced more cortisol as a result, leading to something called pregnenolone stealing. This lead to further hormones imbalances preventing the production of FSH and LH and affecting neurotransmitter balance in the brain. Pregnenolone plays a big role in balancing the neurotransmitteres - this lead to sleep disturbances etc. Eventually she got to a stage where she was producing very little cortisol, hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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]

Can I just come in on discussion and ask where you managed to have appropriate tests done? Did you also have to supplement DHEA and/or aldotesterone? Janet To: Autism-Biomedical-Europe From: m.kidson60@...Date: Wed, 22 Feb 2012 09:43:28 +0000Subject: Re: Neuro AutonomicDisturbances -

Hi ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland. There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get big improvements in breathing etc. she continued to put weight on and suffered terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr urinary free cortisol tests - they all came back at the very bottom of the range.

Interestingly, thryoid panel test results suggested that her thyroid function was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day, couldn't walk anywhere, couldn't take part in any physical activity and her brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline - she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book - the migraines disappeared within an hour or so of taking the first dose and have never come back. Her energy levels rocketed. She is now on 10mg in the morning and 5mg for the other 3 doses. However, I stress dose her if she is going to be doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in spite of normal tests results she is now on 3 grains of NDT a day and this is giving her more energy. It has only been by ensuring that her adrenals are fully supported that the thyroid deficiencies have become clear. I don't think that yet she is fully optimised - I have heard that it can take a year to get to a proper dose of thyroid hormone. Since starting the thyroid hormone (last October) she has grown 4 inches at least and is still growing. At long last her body shape is improving and she can tolerate exercise and is now doing muscle building exercises which she couldn't do before. She is so pleased that at long last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the light sensitivity (we have oestrogen receptors in the eyes + a whole load of other things!

My daugher originally looked as though she had Cushing's - she has truncal obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very long time - probably since just after birth. Once her body needed more thryoid hormone at about 6 or 7 years of age, she couldn't produce it. The body produced more cortisol as a result, leading to something called pregnenolone stealing. This lead to further hormones imbalances preventing the production of FSH and LH and affecting neurotransmitter balance in the brain. Pregnenolone plays a big role in balancing the neurotransmitteres - this lead to sleep disturbances etc. Eventually she got to a stage where she was producing very little cortisol, hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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]

Can I just come in on discussion and ask where you managed to have appropriate tests done? Did you also have to supplement DHEA and/or aldotesterone? Janet To: Autism-Biomedical-Europe From: m.kidson60@...Date: Wed, 22 Feb 2012 09:43:28 +0000Subject: Re: Neuro AutonomicDisturbances -

Hi ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland. There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get big improvements in breathing etc. she continued to put weight on and suffered terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr urinary free cortisol tests - they all came back at the very bottom of the range.

Interestingly, thryoid panel test results suggested that her thyroid function was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day, couldn't walk anywhere, couldn't take part in any physical activity and her brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline - she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book - the migraines disappeared within an hour or so of taking the first dose and have never come back. Her energy levels rocketed. She is now on 10mg in the morning and 5mg for the other 3 doses. However, I stress dose her if she is going to be doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in spite of normal tests results she is now on 3 grains of NDT a day and this is giving her more energy. It has only been by ensuring that her adrenals are fully supported that the thyroid deficiencies have become clear. I don't think that yet she is fully optimised - I have heard that it can take a year to get to a proper dose of thyroid hormone. Since starting the thyroid hormone (last October) she has grown 4 inches at least and is still growing. At long last her body shape is improving and she can tolerate exercise and is now doing muscle building exercises which she couldn't do before. She is so pleased that at long last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the light sensitivity (we have oestrogen receptors in the eyes + a whole load of other things!

My daugher originally looked as though she had Cushing's - she has truncal obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very long time - probably since just after birth. Once her body needed more thryoid hormone at about 6 or 7 years of age, she couldn't produce it. The body produced more cortisol as a result, leading to something called pregnenolone stealing. This lead to further hormones imbalances preventing the production of FSH and LH and affecting neurotransmitter balance in the brain. Pregnenolone plays a big role in balancing the neurotransmitteres - this lead to sleep disturbances etc. Eventually she got to a stage where she was producing very little cortisol, hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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]

Sorry just read your most recent posts so have answered below, but how dod you know other hormones that needed supplementing - is that on the full thyroid hormone test? Did Breakspear guide you with doses? Janet From: proctja@...To: autism-biomedical-europe Subject: RE: Re: Neuro AutonomicDisturbances - Date: Wed, 22 Feb 2012 11:19:18 +0000

Can I just come in on discussion and ask where you managed to have appropriate tests done? Did you also have to supplement DHEA and/or aldotesterone? Janet To: Autism-Biomedical-Europe From: m.kidson60@...Date: Wed, 22 Feb 2012 09:43:28 +0000Subject: Re: Neuro AutonomicDisturbances -

Hi ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland. There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get big improvements in breathing etc. she continued to put weight on and suffered terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr urinary free cortisol tests - they all came back at the very bottom of the range.

Interestingly, thryoid panel test results suggested that her thyroid function was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day, couldn't walk anywhere, couldn't take part in any physical activity and her brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline - she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book - the migraines disappeared within an hour or so of taking the first dose and have never come back. Her energy levels rocketed. She is now on 10mg in the morning and 5mg for the other 3 doses. However, I stress dose her if she is going to be doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in spite of normal tests results she is now on 3 grains of NDT a day and this is giving her more energy. It has only been by ensuring that her adrenals are fully supported that the thyroid deficiencies have become clear. I don't think that yet she is fully optimised - I have heard that it can take a year to get to a proper dose of thyroid hormone. Since starting the thyroid hormone (last October) she has grown 4 inches at least and is still growing. At long last her body shape is improving and she can tolerate exercise and is now doing muscle building exercises which she couldn't do before. She is so pleased that at long last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the light sensitivity (we have oestrogen receptors in the eyes + a whole load of other things!

My daugher originally looked as though she had Cushing's - she has truncal obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very long time - probably since just after birth. Once her body needed more thryoid hormone at about 6 or 7 years of age, she couldn't produce it. The body produced more cortisol as a result, leading to something called pregnenolone stealing. This lead to further hormones imbalances preventing the production of FSH and LH and affecting neurotransmitter balance in the brain. Pregnenolone plays a big role in balancing the neurotransmitteres - this lead to sleep disturbances etc. Eventually she got to a stage where she was producing very little cortisol, hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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]

Sorry just read your most recent posts so have answered below, but how dod you know other hormones that needed supplementing - is that on the full thyroid hormone test? Did Breakspear guide you with doses? Janet From: proctja@...To: autism-biomedical-europe Subject: RE: Re: Neuro AutonomicDisturbances - Date: Wed, 22 Feb 2012 11:19:18 +0000

Can I just come in on discussion and ask where you managed to have appropriate tests done? Did you also have to supplement DHEA and/or aldotesterone? Janet To: Autism-Biomedical-Europe From: m.kidson60@...Date: Wed, 22 Feb 2012 09:43:28 +0000Subject: Re: Neuro AutonomicDisturbances -

Hi ,

Prolactin is a hormone produced by the posterior lobe of the pituitary gland. There will be a reason why it is high.

I would suggest that to start with you could get a full hormone panel done to include TSH, Free T3, Free T4, + all of the sex hormones. Also I would suggest that you do the 24hr Adrenal Saliva test + a 24 hr urinary free cortisol test.

These should highlight if there are any other imbalances to see if the pituitary gland needs looking at. It may also be a hypothalamus issue.

Has he had a MRI scan?

My daughter couldn't tolerate TST and although we tired very hard and we did get big improvements in breathing etc. she continued to put weight on and suffered terribly with de-tox - itchy skin, burning wee, feeling dreadful etc. Energy levels never increased.

I ran a 24hr Adrenal Stress profile which showed that she had very little cortisol throughout the day and almost no DHEA. Dr Goyal ran several 24hr urinary free cortisol tests - they all came back at the very bottom of the range.

Interestingly, thryoid panel test results suggested that her thyroid function was OK - however, it is now clear that it isn't.

My daughter could not get up in the morning, had no energy throughtout the day, couldn't walk anywhere, couldn't take part in any physical activity and her brain would not work! Muscles hurt, etc. etc.

She developed sensivitity to bright light/snow and this time last year was suffering from constant debilitating migraines.

The neurologist said that she had tension headaches and prescibed Amytriptyline - she hasn't taken any!

The Endocrinologist said that there was nothing wrong, even though oestrogen levels are very low, ovaries haven't grown etc.

I read a book called 'The Safe Uses of Cortisol' by Dr K McJefferies and that gave me the confidence to start to treat my daughter.

I started her on hydrocortisone 5mg 4 times a day as recommeded by the book - the migraines disappeared within an hour or so of taking the first dose and have never come back. Her energy levels rocketed. She is now on 10mg in the morning and 5mg for the other 3 doses. However, I stress dose her if she is going to be doing alot of physical activity or something very stressful.

Her cortisol needs are less now that I am giving her more thyroid hormone - in spite of normal tests results she is now on 3 grains of NDT a day and this is giving her more energy. It has only been by ensuring that her adrenals are fully supported that the thyroid deficiencies have become clear. I don't think that yet she is fully optimised - I have heard that it can take a year to get to a proper dose of thyroid hormone. Since starting the thyroid hormone (last October) she has grown 4 inches at least and is still growing. At long last her body shape is improving and she can tolerate exercise and is now doing muscle building exercises which she couldn't do before. She is so pleased that at long last she has found some jeans that she can wear.

I am supplementing oestrogen as her levels are so low - this has sorted the light sensitivity (we have oestrogen receptors in the eyes + a whole load of other things!

My daugher originally looked as though she had Cushing's - she has truncal obesity, a moon face and a buffalo hump. Dr Goyal has been the only medical professional to see this and take it seriously!

What seems to have happened is that she has been severely hypothyroid for a very long time - probably since just after birth. Once her body needed more thryoid hormone at about 6 or 7 years of age, she couldn't produce it. The body produced more cortisol as a result, leading to something called pregnenolone stealing. This lead to further hormones imbalances preventing the production of FSH and LH and affecting neurotransmitter balance in the brain. Pregnenolone plays a big role in balancing the neurotransmitteres - this lead to sleep disturbances etc. Eventually she got to a stage where she was producing very little cortisol, hence the fatigue etc.

Sorry this is so long - I'll stop now, but,let me know if you need to know more.

x

> > > > > > > >

> > > > > > > > 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 Janet, the NHS did some tests, but, Dr Goyal did most of the tests, from

these tests I wanted an opinion from someone who knew what the paediatric

reference ranges were - my local hospital didn't seem to have a clue.

I took my daughter to see Professor Savage at The London Clinic - he used to be

head of paediatric endocrinology @ St Bart's and apparently is considered to be

a world authority. I thought that if didn't think that there was a hormone issue

then I would look into different reasons. He ran various blood tests and he

diagnosed the Gonadotrophin Deficiency and suggested that other hormones would

be deficient. Unfortunately he referred me back to the NHS where things got

stuck. If I had enough spare cash. I would go back to him.

I do supplement DHEA as it was very low. However, finding referecne ranges for

children is almost impossible - I did some research which suggested that DHEA is

very low in children up to puberty when it starts to increase. As my daughter is

13, according to this her DHEA levels should now be quite high, so I felt OK

about supplementing a small amount. She is on 5mg/day

I don't supplement Aldosterone as my research suggested that even if the

adrenals are not receiving enough ACTH that Aldosterone production is generally

OK. I ensure that my dd has enough sea salt and at the beginning she used to

have loads, now she does not crave as much. This seems to be enough - so no

Aldosterone.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 Janet, the NHS did some tests, but, Dr Goyal did most of the tests, from

these tests I wanted an opinion from someone who knew what the paediatric

reference ranges were - my local hospital didn't seem to have a clue.

I took my daughter to see Professor Savage at The London Clinic - he used to be

head of paediatric endocrinology @ St Bart's and apparently is considered to be

a world authority. I thought that if didn't think that there was a hormone issue

then I would look into different reasons. He ran various blood tests and he

diagnosed the Gonadotrophin Deficiency and suggested that other hormones would

be deficient. Unfortunately he referred me back to the NHS where things got

stuck. If I had enough spare cash. I would go back to him.

I do supplement DHEA as it was very low. However, finding referecne ranges for

children is almost impossible - I did some research which suggested that DHEA is

very low in children up to puberty when it starts to increase. As my daughter is

13, according to this her DHEA levels should now be quite high, so I felt OK

about supplementing a small amount. She is on 5mg/day

I don't supplement Aldosterone as my research suggested that even if the

adrenals are not receiving enough ACTH that Aldosterone production is generally

OK. I ensure that my dd has enough sea salt and at the beginning she used to

have loads, now she does not crave as much. This seems to be enough - so no

Aldosterone.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 Janet, the NHS did some tests, but, Dr Goyal did most of the tests, from

these tests I wanted an opinion from someone who knew what the paediatric

reference ranges were - my local hospital didn't seem to have a clue.

I took my daughter to see Professor Savage at The London Clinic - he used to be

head of paediatric endocrinology @ St Bart's and apparently is considered to be

a world authority. I thought that if didn't think that there was a hormone issue

then I would look into different reasons. He ran various blood tests and he

diagnosed the Gonadotrophin Deficiency and suggested that other hormones would

be deficient. Unfortunately he referred me back to the NHS where things got

stuck. If I had enough spare cash. I would go back to him.

I do supplement DHEA as it was very low. However, finding referecne ranges for

children is almost impossible - I did some research which suggested that DHEA is

very low in children up to puberty when it starts to increase. As my daughter is

13, according to this her DHEA levels should now be quite high, so I felt OK

about supplementing a small amount. She is on 5mg/day

I don't supplement Aldosterone as my research suggested that even if the

adrenals are not receiving enough ACTH that Aldosterone production is generally

OK. I ensure that my dd has enough sea salt and at the beginning she used to

have loads, now she does not crave as much. This seems to be enough - so no

Aldosterone.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 Janet,

Good question, apart from cortisol, DHEA and oestrogen which were low on tests,

the rest of the hormones have come from observation and research. Thyroid

hormone was indicated from clinical symptoms and not tests (her TSH was 1.8 so

completely normal), however, if there is a pituitary problem blood tests are not

reliable anyway. Pregnenolone came from my own research on neurotransmitters and

how other hormones are synthesised.

I am waiting to see Dr G again to discuss up to date testing as it is important

to keep testing to make sure that no hormone is going too high. For dosing,

cortisol was easy as I followed the recommendations in the book and learned

about stress dosing from a hypopituitary childrens group. As I continue with the

treatment, she requires less and less stress dosing which is great. DHEA, I am

cautious with as too much and she comes out in spots and greasy hair, but too

little and she doesn't feel as well or sleep as well. So this has been trial and

error. Oestrogen, I use oestrogel and give her the dose that a menopausal woman

would have. This is not what a normal 13year old would have - it would be

higher, but, it has to be increased slowly. This has come from research on girls

with Syndrome.

Pregnenolone dosage, I started at a low dose and gradually increased it - we

could go higher yet. Again research on hormone replacement has given me the

recommended dosages.

Thyroid hormone is also easy - you start low (1/4 grain) and gradually work up

until you reach hyper symptoms and then drop back gain.

A blood pressure monitor has been essential to help keep an eye on things.

Generally, I ahve found that the medical profession are very very cautious when

treating children.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 Janet,

Good question, apart from cortisol, DHEA and oestrogen which were low on tests,

the rest of the hormones have come from observation and research. Thyroid

hormone was indicated from clinical symptoms and not tests (her TSH was 1.8 so

completely normal), however, if there is a pituitary problem blood tests are not

reliable anyway. Pregnenolone came from my own research on neurotransmitters and

how other hormones are synthesised.

I am waiting to see Dr G again to discuss up to date testing as it is important

to keep testing to make sure that no hormone is going too high. For dosing,

cortisol was easy as I followed the recommendations in the book and learned

about stress dosing from a hypopituitary childrens group. As I continue with the

treatment, she requires less and less stress dosing which is great. DHEA, I am

cautious with as too much and she comes out in spots and greasy hair, but too

little and she doesn't feel as well or sleep as well. So this has been trial and

error. Oestrogen, I use oestrogel and give her the dose that a menopausal woman

would have. This is not what a normal 13year old would have - it would be

higher, but, it has to be increased slowly. This has come from research on girls

with Syndrome.

Pregnenolone dosage, I started at a low dose and gradually increased it - we

could go higher yet. Again research on hormone replacement has given me the

recommended dosages.

Thyroid hormone is also easy - you start low (1/4 grain) and gradually work up

until you reach hyper symptoms and then drop back gain.

A blood pressure monitor has been essential to help keep an eye on things.

Generally, I ahve found that the medical profession are very very cautious when

treating children.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 Janet,

Good question, apart from cortisol, DHEA and oestrogen which were low on tests,

the rest of the hormones have come from observation and research. Thyroid

hormone was indicated from clinical symptoms and not tests (her TSH was 1.8 so

completely normal), however, if there is a pituitary problem blood tests are not

reliable anyway. Pregnenolone came from my own research on neurotransmitters and

how other hormones are synthesised.

I am waiting to see Dr G again to discuss up to date testing as it is important

to keep testing to make sure that no hormone is going too high. For dosing,

cortisol was easy as I followed the recommendations in the book and learned

about stress dosing from a hypopituitary childrens group. As I continue with the

treatment, she requires less and less stress dosing which is great. DHEA, I am

cautious with as too much and she comes out in spots and greasy hair, but too

little and she doesn't feel as well or sleep as well. So this has been trial and

error. Oestrogen, I use oestrogel and give her the dose that a menopausal woman

would have. This is not what a normal 13year old would have - it would be

higher, but, it has to be increased slowly. This has come from research on girls

with Syndrome.

Pregnenolone dosage, I started at a low dose and gradually increased it - we

could go higher yet. Again research on hormone replacement has given me the

recommended dosages.

Thyroid hormone is also easy - you start low (1/4 grain) and gradually work up

until you reach hyper symptoms and then drop back gain.

A blood pressure monitor has been essential to help keep an eye on things.

Generally, I ahve found that the medical profession are very very cautious when

treating children.

x

>

> > > > > > > > >

>

> > > > > > > > > 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 ,

I import the thyroid grains - currently using Nature-Throid. There are a whole

load of internet pharmacies which are very reliable. TPA have a list.

No Rx by a doctor - they would only Rx T4 anyway and my research suggests that

NDT is better all round - it used to be the only thing used for hypothyroidism

until synthetic T4 was produced!

>

>

> where do you buy your thyroid grains? is it Rx by the doctor?

> thanks

>

>

>

[Guest guest]

Hi ,

I import the thyroid grains - currently using Nature-Throid. There are a whole

load of internet pharmacies which are very reliable. TPA have a list.

No Rx by a doctor - they would only Rx T4 anyway and my research suggests that

NDT is better all round - it used to be the only thing used for hypothyroidism

until synthetic T4 was produced!

>

>

> where do you buy your thyroid grains? is it Rx by the doctor?

> thanks

>

>

>

[Guest guest]

Hi ,

I import the thyroid grains - currently using Nature-Throid. There are a whole

load of internet pharmacies which are very reliable. TPA have a list.

No Rx by a doctor - they would only Rx T4 anyway and my research suggests that

NDT is better all round - it used to be the only thing used for hypothyroidism

until synthetic T4 was produced!

>

>

> where do you buy your thyroid grains? is it Rx by the doctor?

> thanks

>

>

>

[Guest guest]

Hi Janet,

He is working privately from The London Clinic. You do not need a referral from

anyone, although Dr G referred my daughter once I had found him. I think that he

is quite traditional, but, he is absolutely lovely. The big thing about him is

that he is knows paediatric reference ranges, but, I expect that he would stick

to them. He listened to me which was more than any other endo had and was

prepared to run tests.

Here is the link:

http://www.thelondonclinic.co.uk/consultants/savage,_professor_martin.aspx

x

>

> >

>

> > > > > > > > > >

>

> >

>

> > > > > > > > > > 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 Janet,

He is working privately from The London Clinic. You do not need a referral from

anyone, although Dr G referred my daughter once I had found him. I think that he

is quite traditional, but, he is absolutely lovely. The big thing about him is

that he is knows paediatric reference ranges, but, I expect that he would stick

to them. He listened to me which was more than any other endo had and was

prepared to run tests.

Here is the link:

http://www.thelondonclinic.co.uk/consultants/savage,_professor_martin.aspx

x

>

> >

>

> > > > > > > > > >

>

> >

>

> > > > > > > > > > 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 Janet,

He is working privately from The London Clinic. You do not need a referral from

anyone, although Dr G referred my daughter once I had found him. I think that he

is quite traditional, but, he is absolutely lovely. The big thing about him is

that he is knows paediatric reference ranges, but, I expect that he would stick

to them. He listened to me which was more than any other endo had and was

prepared to run tests.

Here is the link:

http://www.thelondonclinic.co.uk/consultants/savage,_professor_martin.aspx

x

>

> >

>

> > > > > > > > > >

>

> >

>

> > > > > > > > > > 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]

Dear ,

Thanks - it is wonderful to see my daughter improving - continual adjustments

are needed though!

I asked about MRI scans as sometimes continual high prolactin can be due to a

small adenoma on the pituitary gland. I think that these are quite rare though

and I don't want to worry you. The scan required is specialised and requires

contrast dye as the adenomas are so small they can be very hard to see. This was

why I had my daughter's MRI done on a 3 tesler MRI scanner as they are more

detailed - most NHS MRI scanners are only about 1.5 tesler. The scan requested

needs to be of the hypothalamus and pituitary gland.

There are 24hr urinary cortisol tests which might be better - these measure

total cortisol over 24hrs. You can also take temperatures as per www.drrind.com

his metabolic matrix is quite good as well for signs and symptoms.

Dr Goyal would want to see you first, before doing any tests, but, he is very

good. it would be worth seeing him as he may think that there is something else

going on. I did ask for the hormone tests and if you are quite specific about

what you want then that will keep costs down. There is Professor Savage @ the

London clinic if you want a paediatric endocrinologist.

HTH

x

> > > > > > > > > >

> > > > > > > > > > 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]

Dear ,

Thanks - it is wonderful to see my daughter improving - continual adjustments

are needed though!

I asked about MRI scans as sometimes continual high prolactin can be due to a

small adenoma on the pituitary gland. I think that these are quite rare though

and I don't want to worry you. The scan required is specialised and requires

contrast dye as the adenomas are so small they can be very hard to see. This was

why I had my daughter's MRI done on a 3 tesler MRI scanner as they are more

detailed - most NHS MRI scanners are only about 1.5 tesler. The scan requested

needs to be of the hypothalamus and pituitary gland.

There are 24hr urinary cortisol tests which might be better - these measure

total cortisol over 24hrs. You can also take temperatures as per www.drrind.com

his metabolic matrix is quite good as well for signs and symptoms.

Dr Goyal would want to see you first, before doing any tests, but, he is very

good. it would be worth seeing him as he may think that there is something else

going on. I did ask for the hormone tests and if you are quite specific about

what you want then that will keep costs down. There is Professor Savage @ the

London clinic if you want a paediatric endocrinologist.

HTH

x

> > > > > > > > > >

> > > > > > > > > > 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]

Dear ,

Thanks - it is wonderful to see my daughter improving - continual adjustments

are needed though!

I asked about MRI scans as sometimes continual high prolactin can be due to a

small adenoma on the pituitary gland. I think that these are quite rare though

and I don't want to worry you. The scan required is specialised and requires

contrast dye as the adenomas are so small they can be very hard to see. This was

why I had my daughter's MRI done on a 3 tesler MRI scanner as they are more

detailed - most NHS MRI scanners are only about 1.5 tesler. The scan requested

needs to be of the hypothalamus and pituitary gland.

There are 24hr urinary cortisol tests which might be better - these measure

total cortisol over 24hrs. You can also take temperatures as per www.drrind.com

his metabolic matrix is quite good as well for signs and symptoms.

Dr Goyal would want to see you first, before doing any tests, but, he is very

good. it would be worth seeing him as he may think that there is something else

going on. I did ask for the hormone tests and if you are quite specific about

what you want then that will keep costs down. There is Professor Savage @ the

London clinic if you want a paediatric endocrinologist.

HTH

x

> > > > > > > > > >

> > > > > > > > > > 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]

Dear ,

I am arranging for ds to be seen by Dr G and in meantime look at

taking his temp. About the 3 tesler MRI where did you get this done?

Don't worry I'm not panicking, just interested to know more, should an

opportunity arise to have one done, also thinking we have an appt coming

up soon with the metabolic dr at Gt Ormond and would like to get more

info from him whilst there.

Thank you so much for all your help.

emily x

> > > > > > > > > > >

> > > > > > > > > > > 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]

Dear ,

I am arranging for ds to be seen by Dr G and in meantime look at

taking his temp. About the 3 tesler MRI where did you get this done?

Don't worry I'm not panicking, just interested to know more, should an

opportunity arise to have one done, also thinking we have an appt coming

up soon with the metabolic dr at Gt Ormond and would like to get more

info from him whilst there.

Thank you so much for all your help.

emily x

> > > > > > > > > > >

> > > > > > > > > > > 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]

Dear ,

This is where we went: http://www.cobalthealth.co.uk/

They have a mobile 3 tesler scanner which goes around the country.

They were not very expensive either.

Good luck.

x

> > > > > > > > > > > >

> > > > > > > > > > > > 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.

> > > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>