Re: URGENT HELP for Girl with Autism

[Guest guest]

Hi I am hoping someone can help give advice for what seems a very unusual case. I met a Mum today who has a daughter aged 16 with autism. It is such as sad case as for some reason she regressed when she was 12 – up until then she had been fine – they have no idea why she regressed. Anyway for the first 3 years after the regression she visited numerous hospitals, including Great Ormond Street and saw a wide variety of consultants and during this time was had 3 different diagnoses of depression, juvenile dementia and then vascular dementia – but a year ago she was diagnosed with autism. When she first regressed she gradually lost all speech and understanding, is now back in pull-ups, can no longer read and write and has aggressive behaviours where she has complete melt downs. During the first 3 years because they weren’t sure what they were dealing and because of her violent behaviour she was admitted to the Priory for 6 weeks and on another occasion was admitted to a pscychiatric unit for 7 weeks. I can’t believe how much this poor girl has suffered. Before Xmas on 16th Dec she went down with flu (they think) – but since then she has been sleeping for 19-21 hours a day and only awake for 3-5 hours. Doctors are now speculating that she may be in some sort of catatonic state as a way of coping. Basically no-one is sure what is going on with her. She has become very sensitive to sounds, touch etc more recently and has lost alot of weight as she isn’t eating much as she is sleeping most of the time. The family are obviously in crisis and don’t know what to do for the best, but the hardest thing is knowing that even the doctors don’t really know what is wrong with . Has anyone heard of such a case before? Is there any doctor (in any country) that people could recommend that she could speak to? Has anyone any idea what could be going on with this poor girl? I would really appreciate any advice possible so I can try and help this family. ThanksNicola

[Guest guest]

Hi (snip) Before Xmas on 16th Dec she went down with flu (they think) – but since then she has been sleeping for 19-21 hours a day and only awake for 3-5 hours.

Sounds like chronic fatigue syndrome (ME) which hopefully chelation and supplements would help.i dont get so much of the fatigue following my mercury filling removal about 3 years ago.

 

Doctors are now speculating that she may be in some sort of catatonic state as a way of coping. Basically no-one is sure what is going on with her. She has become very sensitive to sounds, touch etc more recently and has lost alot of weight as she isn’t eating much as she is sleeping most of the time.

Sounds like she has a severe case of sensory integration disorder to me. i have read about this in Sharon Helliers book about 'sensory defensiveness' which mentions things like the wallberger protocol and other sensory exercises that could help your friend.

 The family are obviously in crisis and don’t know what to do for the best, but the hardest thing is knowing that even the doctors don’t really know what is wrong with .

 Has anyone heard of such a case before? Is there any doctor (in any country) that people could recommend that she could speak to? Has anyone any idea what could be going on with this poor girl?

 I would really appreciate any advice possible so I can try and help this family.Good luck to you and s family.

 -- is

 

 

 

 

 

 

 

 

 

[Guest guest]

That is so so sad Nicola! Were there any events when she was 12 that might have

triggered the regression? Hope you get some useful suggestions to pass on.

Dreadful.

Sharon x

Sent using BlackBerry® from Orange

RE: URGENT HELP for Girl with Autism

 

Hi

 

I am hoping someone can help give advice for what seems a very unusual case.

 

I met a Mum today who has a daughter aged 16 with autism. It is such as sad case

as for some reason she regressed when she was 12 - up until then she had been

fine - they have no idea why she regressed.

 

Anyway for the first 3 years after the regression she visited numerous

hospitals, including Great Ormond Street and saw a wide variety of consultants

and during this time was had 3 different diagnoses of depression, juvenile

dementia and then vascular dementia - but a year ago she was  diagnosed with

autism. When she first regressed she gradually lost all speech and

understanding, is now back in pull-ups, can no longer read and write and has

aggressive behaviours where she has complete melt downs. During the first 3

years because they weren't sure what they were dealing and because of her

violent behaviour she was admitted to the Priory for 6 weeks and on another

occasion was admitted to a pscychiatric unit for 7 weeks.

 

I can't believe how much this poor girl has suffered.  

 

Before Xmas on 16th Dec she went down with flu (they think) - but since then she

has been sleeping for 19-21 hours a day and only awake for 3-5 hours. Doctors

are now speculating that she may be in some sort of catatonic state as a way of

coping. Basically no-one is sure what is going on with her. She has become very

sensitive to sounds, touch etc more recently and has lost alot of weight as she

isn't eating much as she is sleeping most of the time.

 

The family are obviously in crisis and don't know what to do for the best, but

the hardest thing is knowing that even the doctors don't really know what is

wrong with .

 

Has anyone heard of such a case before? Is there any doctor (in any country)

that people could recommend that she could speak to? Has anyone any idea what

could be going on with this poor girl?

 

I would really appreciate any advice possible so I can try and help this family.

 

Thanks

Nicola

 

 

[Guest guest]

Dear NicolaI know one of the mum's on this group has a son who was also sleeping nearly all the time and had a lot of other health issues... She took her son to see Scotson.. and doing the exercises she prescribed he is awake a lot more and is doing a lot more too.. 

is always happy to speak to people , or to answer letters from them.. She is really good with neural issues.. and has performed a minor miracle on her own son who was born with severe brain injury.... and with many of her patients who have developed their neural issues for a variety of reasons.. 

Best WishesTracey

 

Hi  I am hoping someone can help give advice for what seems a very unusual case.  

I met a Mum today who has a daughter aged 16 with autism. It is such as sad case as for some reason she regressed when she was 12 – up until then she had been fine – they have no idea why she regressed.

 Anyway for the first 3 years after the regression she visited numerous hospitals, including Great Ormond Street and saw a wide variety of consultants and during this time was had 3 different diagnoses of depression, juvenile dementia and then vascular dementia – but a year ago she was  diagnosed with autism. When she first regressed she gradually lost all speech and understanding, is now back in pull-ups, can no longer read and write and has aggressive behaviours where she has complete melt downs. During the first 3 years because they weren’t sure what they were dealing and because of her violent behaviour she was admitted to the Priory for 6 weeks and on another occasion was admitted to a pscychiatric unit for 7 weeks.

 I can’t believe how much this poor girl has suffered.   Before Xmas on 16th Dec she went down with flu (they think) – but since then she has been sleeping for 19-21 hours a day and only awake for 3-5 hours. Doctors are now speculating that she may be in some sort of catatonic state as a way of coping. Basically no-one is sure what is going on with her. She has become very sensitive to sounds, touch etc more recently and has lost alot of weight as she isn’t eating much as she is sleeping most of the time.

 The family are obviously in crisis and don’t know what to do for the best, but the hardest thing is knowing that even the doctors don’t really know what is wrong with .

 Has anyone heard of such a case before? Is there any doctor (in any country) that people could recommend that she could speak to? Has anyone any idea what could be going on with this poor girl?

 I would really appreciate any advice possible so I can try and help this family. ThanksNicola

  

[Guest guest]

Nicola, there are few similar cases described in science literature where individuals as old as her and even much older developed autism following herpes encephalitis. I think one person was over 30 years old. There is also a case with a 6-7 year old typical boy whose HIV reactivated and he became very autistic (recovered later following haart therapy). I think there are also cases of older children regressing following bacterial infections such as syphilis. In all those cases of herpes encephalitis resulting in autism the children/adults would fall acutely ill, were hospitalised etc, spinal taps were taken and acute infection confirmed.Can the parents remember any obvious signs of illness appearing just before her problems started? Was she in contact with any sick people before it all started? Was she hospitalised for anything before coming ill (I'm thinking hospital bugs etc)You can find links to those late-onset of autism cases following herpes encephalitis here http://autismcalciumchannelopathy.com/Infectious_Agents.htmlthe sounds sensitivities and other recent sypmtoms including agression would fit with that infection/encephalitis picture, whatever caused her to regressed initially could have been reactivated by her recent flu illness. btw the doctor/parents should definitely look into PROPRANOLOL for agression - it is used in both dementia and autism and also herpes encephalitis to reduce agression... What clinical examinations did she have, if any? has she ever been tested for HIV? Natasa > > > Sent using BlackBerry® from Orange> > RE: URGENT HELP for Girl with Autism> > > > > > > > > Hi > > I am hoping someone can help give advice for what seems a very unusual case. > > I met a Mum today who has a daughter aged 16 with autism. It is such as sad case as for some reason she regressed when she was 12 - up until then she had been fine - they have no idea why she regressed.> > Anyway for the first 3 years after the regression she visited numerous hospitals, including Great Ormond Street and saw a wide variety of consultants and during this time was had 3 different diagnoses of depression, juvenile dementia and then vascular dementia - but a year ago she was diagnosed with autism. When she first regressed she gradually lost all speech and understanding, is now back in pull-ups, can no longer read and write and has aggressive behaviours where she has complete melt downs. During the first 3 years because they weren't sure what they were dealing and because of her violent behaviour she was admitted to the Priory for 6 weeks and on another occasion was admitted to a pscychiatric unit for 7 weeks. > > I can't believe how much this poor girl has suffered. > > Before Xmas on 16th Dec she went down with flu (they think) - but since then she has been sleeping for 19-21 hours a day and only awake for 3-5 hours. Doctors are now speculating that she may be in some sort of catatonic state as a way of coping. Basically no-one is sure what is going on with her. She has become very sensitive to sounds, touch etc more recently and has lost alot of weight as she isn't eating much as she is sleeping most of the time.> > The family are obviously in crisis and don't know what to do for the best, but the hardest thing is knowing that even the doctors don't really know what is wrong with .> > Has anyone heard of such a case before? Is there any doctor (in any country) that people could recommend that she could speak to? Has anyone any idea what could be going on with this poor girl?> > I would really appreciate any advice possible so I can try and help this family.> > Thanks> Nicola> > >

[Guest guest]

How awful.I just wondered if had any vaccinations prior to her regression? I don't think the HPV cervical cancer jab had been introduced four years ago, but if she had been on holiday to anywhere outside Europe she might have been given Hep B or tetanus?Joanne>> Hi > > > > I am hoping someone can help give advice for what seems a very unusual case.> > > > > I met a Mum today who has a daughter aged 16 with autism. It is such as sad> case as for some reason she regressed when she was 12 - up until then she> had been fine - they have no idea why she regressed.> > > > Anyway for the first 3 years after the regression she visited numerous> hospitals, including Great Ormond Street and saw a wide variety of> consultants and during this time was had 3 different diagnoses of> depression, juvenile dementia and then vascular dementia - but a year ago> she was diagnosed with autism. When she first regressed she gradually lost> all speech and understanding, is now back in pull-ups, can no longer read> and write and has aggressive behaviours where she has complete melt downs.> During the first 3 years because they weren't sure what they were dealing> and because of her violent behaviour she was admitted to the Priory for 6> weeks and on another occasion was admitted to a pscychiatric unit for 7> weeks. > > > > I can't believe how much this poor girl has suffered. > > > > Before Xmas on 16th Dec she went down with flu (they think) - but since then> she has been sleeping for 19-21 hours a day and only awake for 3-5 hours.> Doctors are now speculating that she may be in some sort of catatonic state> as a way of coping. Basically no-one is sure what is going on with her. She> has become very sensitive to sounds, touch etc more recently and has lost> alot of weight as she isn't eating much as she is sleeping most of the time.> > > > The family are obviously in crisis and don't know what to do for the best,> but the hardest thing is knowing that even the doctors don't really know> what is wrong with .> > > > Has anyone heard of such a case before? Is there any doctor (in any country)> that people could recommend that she could speak to? Has anyone any idea> what could be going on with this poor girl?> > > > I would really appreciate any advice possible so I can try and help this> family.> > > > Thanks> > Nicola>

[Guest guest]

The story of this girl sounds very similar to Sophia Mirza's story

http://sophiaandme.org.uk/ and if that's the case she needs urgent help.

I hope she will get it...

[Guest guest]

Hi Nicola,

Could it be childhood disintegrative disorder,this usually happens from 3-4

years and generally before 10, but at age 12 it still could be that imo, these

age ranges aren't set in stone. It is alot rarer than autism apparently, here

are a couple of links about it:

http://www.patient.co.uk/doctor/Heller's-Syndrome.htm

http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder

the 'patient' website has some differential diagnosis that your friend might

like to explore. Dr Myhill would be a good choice to see if they can get to her.

She definitely has immune system issues by the way she is having trouble shaking

off that virus she caught.

hth,

Nikki x

>

> Hi

>

>

>

> I am hoping someone can help give advice for what seems a very unusual case.

>

>

>

>

> I met a Mum today who has a daughter aged 16 with autism. It is such as sad

> case as for some reason she regressed when she was 12 - up until then she

> had been fine - they have no idea why she regressed.

>

>

>

> Anyway for the first 3 years after the regression she visited numerous

> hospitals, including Great Ormond Street and saw a wide variety of

> consultants and during this time was had 3 different diagnoses of

> depression, juvenile dementia and then vascular dementia - but a year ago

> she was diagnosed with autism. When she first regressed she gradually lost

> all speech and understanding, is now back in pull-ups, can no longer read

> and write and has aggressive behaviours where she has complete melt downs.

> During the first 3 years because they weren't sure what they were dealing

> and because of her violent behaviour she was admitted to the Priory for 6

> weeks and on another occasion was admitted to a pscychiatric unit for 7

> weeks.

>

>

>

> I can't believe how much this poor girl has suffered.

>

>

>

> Before Xmas on 16th Dec she went down with flu (they think) - but since then

> she has been sleeping for 19-21 hours a day and only awake for 3-5 hours.

> Doctors are now speculating that she may be in some sort of catatonic state

> as a way of coping. Basically no-one is sure what is going on with her. She

> has become very sensitive to sounds, touch etc more recently and has lost

> alot of weight as she isn't eating much as she is sleeping most of the time.

>

>

>

> The family are obviously in crisis and don't know what to do for the best,

> but the hardest thing is knowing that even the doctors don't really know

> what is wrong with .

>

>

>

> Has anyone heard of such a case before? Is there any doctor (in any country)

> that people could recommend that she could speak to? Has anyone any idea

> what could be going on with this poor girl?

>

>

>

> I would really appreciate any advice possible so I can try and help this

> family.

>

>

>

> Thanks

>

> Nicola

>

[Guest guest]

Dear Nicola,

It's such a sad story.I asked this to some people in my group. If I get any

responses I will write here.

I hope she will safely pass this stage and find the right cure.

nevin

>

> Hi

>

>

>

> Thank you so much for all your posts.

>

>

>

> The only thing that preceded the regression was a minor fall from the

> trampoline where she hurt her wrist - but this doesn't seem significant and

> I think they have tried to identify possible triggers, but this was the only

> possible thing they could think of.

>

>

>

> I suppose Scotson could be a possible avenue for her to explore, but

> the only problem they have at the moment is that she cannot travel. The

> doctors visiting her at home have been pushing for her to be admitted to

> hospital but the Mum has been refusing as does not cope well in

> hospitals as she has spent so much of the last 4 years in and out of

> hospitals having all sorts of tests that she has a real aversion to

> hospitals.

>

>

>

> I asked about the vaccine question today and she can't remember her having

> any injection at the time and when I checked when I got home the only

> vaccination teenage girls tend to have is the booster DTP from 13 years

> onwards (I think!)

>

>

>

> Mandi - They are based in Swansea - not sure where Dr Mayhill is?

>

>

>

> How can she get Lyme's disease tested - is this something the NHS doctors

> could do?

>

>

>

> Thank you so much for all your replies - it is very useful

>

>

>

> Please keep them coming!

>

>

>

> Nicola

>

> x

>

>

>

>

>

>

>

>

>

>

>

> From: Autism-Biomedical-Europe

> [mailto:Autism-Biomedical-Europe ] On Behalf Of biche biche

> Sent: 21 January 2011 19:14

> To: Autism-Biomedical-Europe

> Subject: Re: Re: URGENT HELP for Girl with Autism

>

>

>

>

>

> I do not have a suggestion, just hope there are people out there who could

> bring

> some. I wish and her family all the best and I hope there will be a

> solution to this dreadful situation.

>

> If someone is bitten by a tick, do they automatically get Lyme disease or

> not

> necessarily? My daughter has also been bitten by one...

>

> Helen

>

> RE: URGENT HELP for Girl with Autism

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi

> >

> > I am hoping someone can help give advice for what seems a very unusual

> case.

> >

> > I met a Mum today who has a daughter aged 16 with autism. It is such as

> sad

> >case as for some reason she regressed when she was 12 - up until then she

> had

> >been fine - they have no idea why she regressed.

> >

> > Anyway for the first 3 years after the regression she visited numerous

> >hospitals, including Great Ormond Street and saw a wide variety of

> consultants

> >and during this time was had 3 different diagnoses of depression, juvenile

> >dementia and then vascular dementia - but a year ago she was diagnosed with

>

> >autism. When she first regressed she gradually lost all speech and

> >understanding, is now back in pull-ups, can no longer read and write and

> has

> >aggressive behaviours where she has complete melt downs. During the first 3

>

> >years because they weren't sure what they were dealing and because of her

> >violent behaviour she was admitted to the Priory for 6 weeks and on another

>

> >occasion was admitted to a pscychiatric unit for 7 weeks.

> >

> >

> > I can't believe how much this poor girl has suffered.

> >

> > Before Xmas on 16th Dec she went down with flu (they think) - but since

> then

> >she has been sleeping for 19-21 hours a day and only awake for 3-5 hours.

> >Doctors are now speculating that she may be in some sort of catatonic state

> as a

> >way of coping. Basically no-one is sure what is going on with her. She has

> >become very sensitive to sounds, touch etc more recently and has lost alot

> of

> >weight as she isn't eating much as she is sleeping most of the time.

> >

> > The family are obviously in crisis and don't know what to do for the best,

> but

> >the hardest thing is knowing that even the doctors don't really know what

> is

> >wrong with .

> >

> > Has anyone heard of such a case before? Is there any doctor (in any

> country)

> >that people could recommend that she could speak to? Has anyone any idea

> what

> >could be going on with this poor girl?

> >

> > I would really appreciate any advice possible so I can try and help this

> >family.

> >

> > Thanks

> > Nicola

> >

> >

> >

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice.

> If

> you need medical advice, please seek it from a suitably qualified

> practitioner.

>