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[Help] Help needed - Autism & PANDAS



Poojah

Well-known member
Nov 19, 2010
1,881
Leeds
Let me just get this out of the way: this post is about autism spectrum disorders in children, one of which happens to be known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). I appreciate that sounds less entertaining than jokes about autistic pandas or ‘eats, shoots and leaves’ gags, so I apologise for that in advance.

This is a long shot I know, however desperate times cause for desperate measures, and NSC is yet to let me down. Here goes.

My sister’s little girl is 9 years old, and in many ways just a lovely, normal little girl - my two nippers play beautifully with her. But for a while now she has had one or two weird obsessions, in particular sensory issues with fabric touching her skin. Certain garments, particularly socks, are more troublesome than others.

This has been problematic and somewhat inconvenient for some time - she is regularly late to school because of issues getting dressed in the morning despite the very best efforts of my sister and her husband. They’ve seen various therapists and psychologists over the past couple of years with limited success.

In the last couple of weeks however things have escalated. She is now completely unable to bear any clothes whatsoever, and can no longer even tolerate a duvet or bed linen and so she has quite literally spent the last two weeks wearing absolutely nothing and therefore unable to leave the house or go to school. As you can imagine, no one in that house is getting much sleep at the minute.

The most likely diagnoses that have been thrown their way is a rare form of autism, or another rare syndrome called PANDAS which causes odd behaviour such as tics and extreme OCD in children following a streptococcal infection. On the latter front, she has been admitted to hospital on two occasions for a mystery illnesses that were never fully identified. In theory, PANDAS can be diagnosed via a blood test however another obsession of my niece’s is an extreme fear of needles, which complicates things further.

They’ve tried several specialists across the country to no avail - most seem not to want to get involved because of the complexities surrounding her case and symptoms.

And so hence I’m reaching out to the oracle of experience that is NSC. Her family’s lives have almost come to a complete standstill because of this, and it seems like there is no end in sight. They are at their wits end. Does anyone have any experience of diagnosing rare manifestations of autism or the aforementioned PANDAS? If so, can anyone recommend a specialist who might be able to help? Anywhere in the country, it doesn’t matter. Private is fine too, probably preferable given the urgency.

To anyone who might think this sounds like a trivial issue being taken advantage of by a child being indulged by her parents, that was my initial take a year or two ago. But believe me, having witnessed the complete melt downs which prevail it is well beyond that and something that has both the shrinks and therapists baffled as much as anyone.

As I say, a long shot I know, but I know what a great place this can be when help is needed. Thanks!
 




BadFish

Huge Member
Oct 19, 2003
18,197
As the father of two on the spectrum my heart goes out to you and your family.

I am sorry, but I don't have experience of anything to this degree. My son son and daughter wear nothing other than long sleeve t shirts and Tracky bottoms. Even tot he point that my son's school uniform goes over the top of his. We live in Australia and this happens on 30+ degree days. Actually I tell a lie, last summer on really hot days they may be persuaded to wear a t shirt.

The only suggestion I can think of is some you've probably already done. We have joined lots of support groups both on line and face to face. There are usually lots of support, ideas and recommendations.

Good luck with it.

BF

Sent from my Redmi Note 7 using Tapatalk
 


Poojah

Well-known member
Nov 19, 2010
1,881
Leeds
As the father of two on the spectrum my heart goes out to you and your family.

I am sorry, but I don't have experience of anything to this degree. My son son and daughter wear nothing other than long sleeve t shirts and Tracky bottoms. Even tot he point that my son's school uniform goes over the top of his. We live in Australia and this happens on 30+ degree days. Actually I tell a lie, last summer on really hot days they may be persuaded to wear a t shirt.

The only suggestion I can think of is some you've probably already done. We have joined lots of support groups both on line and face to face. There are usually lots of support, ideas and recommendations.

Good luck with it.

BF

Sent from my Redmi Note 7 using Tapatalk

Thanks - appreciate that. :thumbsup:
 


Joey Jo Jo Jr. Shabadoo

I believe in Joe Hendry
Oct 4, 2003
12,063
My youngest son is autistic, had a real battle to get him diagnosed and ended up going private as we weren’t getting anywhere with the NHS at the time. We used MPA in Brighton, they were great and not as expensive as I was expecting it to be (although this was 5 years ago now). Thankfully since using MPA my son has also had an NHS diagnosis and an EHCP in place which has helped him hugely. So although things may look bleak now they will get better.

https://www.mpapro.co.uk/s/

Please feel free to drop me a PM if you have any questions etc.
 


Goldstone1976

We Got Calde in!!
Helpful Moderator
NSC Patron
Apr 30, 2013
14,124
Herts
Firstly, you and your family have my sincere sympathies.

I know very little personally, but something rang a bell, so I googled it. Bear with me, there is possible relevance.

There is a charity: https://www.panspandasuk.org/faq-s

On that FAQ, they refer to a linkage between Group A strep and PANDAS.

That made me think of Group B strep (I do NOT know if Group A strep and Group B strep are linked).

Group B strep has a charity: https://gbss.org.uk/about/who-we-are/about-our-trustees/

And eventually I reach my possible point: I know the CEO, Jane Plumb.

Do have a look, and let me know (PM) if you think there is any relevance. If so, I would happily put you in touch with Jane.

Somewhat clutching at straws, I know, but I thought I’d mention it.

Good luck.
 




darkwolf666

Well-known member
Nov 8, 2015
7,651
Sittingbourne, Kent
As somebody bringing up a child with severe autism I feel a massive amount of sympathy for your sister.

It is impossible, unless you have had the experience of bringing up a child with complex needs to fully understand how these things impact on your life - the sleep bit you mention is a major major part of the problem, as sleep deprivation makes it very difficult to function in a meaningful way.

We have also been advised to seek out help groups - which in themselves are great as sounding boards, and for getting some tips and hints at how to deal with things, but unfortunately each autistic child is different, so there is no guide book that gives you all the answers.

I know it is probably of little help at this moment in time to your sister, but in our experience many of these traits that autistic children show are often transient - this doesn't help when you are actually living it in the moment, but it is something to bear in mind to hopefully get her through.

Good luck to her and her child and kudos to you for supporting her!
 


jackanada

Well-known member
Jul 19, 2011
3,507
Brighton
My youngest son is autistic, had a real battle to get him diagnosed and ended up going private as we weren’t getting anywhere with the NHS at the time. We used MPA in Brighton, they were great and not as expensive as I was expecting it to be (although this was 5 years ago now). Thankfully since using MPA my son has also had an NHS diagnosis and an EHCP in place which has helped him hugely. So although things may look bleak now they will get better.

https://www.mpapro.co.uk/s/

Please feel free to drop me a PM if you have any questions etc.

Yes there's some good people there.
What I'd recommend is phoning them ASAP. They may not be the people you need but if anyone knows who the people you need are they will.
 


Sirnormangall

Well-known member
Sep 21, 2017
3,178
Let me just get this out of the way: this post is about autism spectrum disorders in children, one of which happens to be known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). I appreciate that sounds less entertaining than jokes about autistic pandas or ‘eats, shoots and leaves’ gags, so I apologise for that in advance.

This is a long shot I know, however desperate times cause for desperate measures, and NSC is yet to let me down. Here goes.

My sister’s little girl is 9 years old, and in many ways just a lovely, normal little girl - my two nippers play beautifully with her. But for a while now she has had one or two weird obsessions, in particular sensory issues with fabric touching her skin. Certain garments, particularly socks, are more troublesome than others.

This has been problematic and somewhat inconvenient for some time - she is regularly late to school because of issues getting dressed in the morning despite the very best efforts of my sister and her husband. They’ve seen various therapists and psychologists over the past couple of years with limited success.

In the last couple of weeks however things have escalated. She is now completely unable to bear any clothes whatsoever, and can no longer even tolerate a duvet or bed linen and so she has quite literally spent the last two weeks wearing absolutely nothing and therefore unable to leave the house or go to school. As you can imagine, no one in that house is getting much sleep at the minute.

The most likely diagnoses that have been thrown their way is a rare form of autism, or another rare syndrome called PANDAS which causes odd behaviour such as tics and extreme OCD in children following a streptococcal infection. On the latter front, she has been admitted to hospital on two occasions for a mystery illnesses that were never fully identified. In theory, PANDAS can be diagnosed via a blood test however another obsession of my niece’s is an extreme fear of needles, which complicates things further.

They’ve tried several specialists across the country to no avail - most seem not to want to get involved because of the complexities surrounding her case and symptoms.

And so hence I’m reaching out to the oracle of experience that is NSC. Her family’s lives have almost come to a complete standstill because of this, and it seems like there is no end in sight. They are at their wits end. Does anyone have any experience of diagnosing rare manifestations of autism or the aforementioned PANDAS? If so, can anyone recommend a specialist who might be able to help? Anywhere in the country, it doesn’t matter. Private is fine too, probably preferable given the urgency.

To anyone who might think this sounds like a trivial issue being taken advantage of by a child being indulged by her parents, that was my initial take a year or two ago. But believe me, having witnessed the complete melt downs which prevail it is well beyond that and something that has both the shrinks and therapists baffled as much as anyone.

As I say, a long shot I know, but I know what a great place this can be when help is needed. Thanks!

Might be worth having a look at askmeandmo.com - they specialise in providing autism support.
 




Poojah

Well-known member
Nov 19, 2010
1,881
Leeds
Thank you to everyone who has taken the time to respond to this thread. We’re looking into the various strands of advice and trying to find a way through (today has not been a good day, as I understand it).

For a modest old football forum, this place never ceases to amaze me.
 


Barnet Seagull

Luxury Player
Jul 14, 2003
5,983
Falmer, soon...
Although many are not fans, we have found Facebook to be an incredible resource for complex needs parenting. I would imagine there would be group and in my experience they often know much more than the local authority.
 


Stevsie

New member
Oct 20, 2017
1
We had very similar issues with my autistic daughter, particularly the socks..!

A lot of it was down to school anxiety. She was never great at school and things got increasingly difficult through the years. We had more trouble getting her in and more meltdowns after school had finished. Because she had learned to ‘mask’ whilst at school it took a long time to realise that was where the problem lay....

She has now been out of school for 18 months and is a changed person - still only wears shorts whatever the weather but is bright and confident, things we only really saw in the middle of the summer holiday when she was going to school.
 


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