Re: Re: URGENT HELP for Girl with Autism

[Guest guest]

She is in WALES!!!

http://www.drmyhill.co.uk/

Wondering if she could have banged her head with the trampoline or had a fall beforehand, Headway lady was at Lucinda's paediatric meeting late last year, some bumps can cause major problems done the line, sometimes 2 years after the incident, might be worth talking to them

http://www.headway.org.uk/home.aspx

But Dr Myhill would be my first choice in this situation, maybe than can do telephoen consult? She can test for Lyme and all sorts

Mandi x

Man di - 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?

[Guest guest]

....or was she bitten by a tick? (I'm thinking Lyme disease). When you said

syphilis Natasa this also came to mind as a possibility.

Sent using BlackBerry® from Orange

RE: URGENT HELP for Girl with Autism

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>

>

>

>

>

> 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

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>  

>

[Guest guest]

Hi was in hospital a & e following the fall on the trampoline, but not admitted. I will print your email off and take it with me next time I visit her. I only met the Mum for the first time today so gained some information but by no means all information – but I will ask her next time I see her. I saw her daughter sleeping in bed and she looked so pale and drawn – I really feel for this girl Thanks againNicola From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of natasa778Sent: 21 January 2011 17:52To: Autism-Biomedical-Europe Subject: Re: URGENT HELP for Girl with Autism 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]

Nicola,If Lyme is suspected - Dr Yeoh at Breakspear has just come back, or will be back by the end of January, from a 9 month sabbatical studying Lyme Disease treatment at various places. Maybe she could advise on testing/treatment or someone closer to Swansea than Hemel Hempstead with Lyme expertise. To:

Autism-Biomedical-Europe Sent: Fri, 21 January, 2011 20:16:37Subject: RE: Re: URGENT HELP for Girl with Autism

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! Nicolax From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of biche bicheSent: 21 January 2011 19:14To: 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> > >------------------------------------DISCLAIMERNo 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.

[Guest guest]

My nephew has a rare blood anemia and was bitten by a tick. He got something called babesiosis. It was very serious and made him very sick. Once they figured it out, and gave him the right medicine. He got better. Good Luck. We are praying for you!

To: Autism-Biomedical-Europe Sent: Fri, January 21, 2011 1:14:26 PMSubject: 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> > >------------------------------------DISCLAIMERNo 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.

[Guest guest]

Hi Thanks Nikki and everyone else that posted The difficulty at the moment is that I really only have a very brief summary of the story so far as I only met the Mum for the first time on Friday. However the good news is that she is really keen to hear from other parents and get advice from them as up and until now she has only been passed from one professional to another. The Mum has recently been advised that once is back up on her feet then they should put her in residential school and she had thought that was the only option. I have been explaining that there could be other options. I have also explained to her how many parents out there have not always had the answers from NHS doctors but there are other doctors out there that may have the answers. I am going to keep plugging away as I really want to help this girl and thank you so much for all your advice Nicola From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of NikkiSent: 22 January 2011 18:16To: Autism-Biomedical-Europe Subject: Re: URGENT HELP for Girl with Autism 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.htmhttp://en.wikipedia.org/wiki/Childhood_disintegrative_disorderthe '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>