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Juvenile Huntington’s Disease Forum concerning all aspects of JHD

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Old 05-04-16, 02:19 AM   #1
nightowl
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Default 50/50 jhd contacts? Behaviours!

Evening all. I was checking in to see any recent posts here re Jhd. Very quiet...

Set me wondering if anyone has much to say on this or not here, away from the boards ; and where they as parents, of children and young people may meet to do so?

Our lass is still going through turbulent times still and I feel is quite psychologically and emotionally under a huge pressure resulting in very challenging behaviours at home. Very hard to respond appropriately as we are nowhere near maturity/ consent or closer to knowing if Jhd is indeed starting to unravel itself.

It is so very hard to not feel ridiculed by others who barely see these issues in her. But they are crippling our quality of life and how we plan or anticipate 'what next?' even day to day.

Also the ' generic' carers group or those that cater for parenting disabled children causes me some uncertainty. I can't give an explanation about daughters circumstances as the whole premise of Jhd is ' its their story not mine' and her private life and inheritance should be totally private or at the very least on a need to know basis for reasons of care etc.

I know its a minefield but how do we get the problems addressed appropriately in the absence of other flags to jhd.or indeed avoid a misdiagnosis from her paediatrician of something else? He is v slow to categorise anything saying her behaviours are not indicative of neurodevelopmental problems eg Adhd . We are in contact with genetics and started a psychology asessment recently. Our daughter is 6 and
by the way I am talking extreme stuff not kiddies tantrums.

Deep breath. Thanks for reading again!
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Old 05-04-16, 01:35 PM   #2
Allan
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Default Re: 50/50 jhd contacts? Behaviours!

.
Hi Nightowl

Over the past 4 years there hasn’t been too much activity in this “JHD” category or the “Young People” category – just a total of 1,400 messages since 2006. Whereas the “Testing” and “Research” categories have had over 7,000 messages in total. One of the explanations is that there are less than 500 young people in England and Wales with JHD. It is then thought that there might only be 6-10 children who are below the age of 10 who are displaying symptoms – with behavioural issues to the fore. These behavioural issues, of course, do not always equate with the adult version of behavioural\psychiatric symptoms [anxiety, irritability, depression, etc].

Also, with such small numbers, there ain’t much scientific research out there. Neither will you come across any people in the same situation as your family. I’ve read through your previous posts and I realise that I have to agree with my response from a couple of years ago, where you stated this in one of your posts:

There does not seem to be any mention of this in books and it’s hard to find support from children’s services that can help or are relevant.

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The Prevalence of Juvenile Huntington’s Disease: A Review of the Literature and Meta-Analysis

Apologies if this seems a bit formal but it’s a very emotive topic and I can only handle it when I’m sat with my laptop, looking out to sea – with no other thoughts in my head. My son was diagnosed with HD 4 years ago at the age of 25 but, retrospectively, he may well have been displaying hd-behavioural issues in his mid-teens.

Pathological Demand Avoidance, by the way, seems to be the equivalent of High Anxiety in adult HD.

Sheffield Children’s Hospital have a specific expertise in JHD and as it’s just across the border from you it might be worth contacting your regional Specialist HD Adviser: Helen James 01332 518988 helen.james@hda.org.uk for further information.

I can't give an explanation about daughters circumstances as the whole premise of Jhd is ' it’s their story not mine' and her private life and inheritance should be totally private or at the very least on a need to know basis for reasons of care etc.

This could become an issue for you as your daughter grows older as she is the patient\client and the authorities don’t seem to be able to understand the fact that our symptomatic hd-family members cannot, in many instances, manage their own affairs – even when phone calls and letters are received.

I know it’s a minefield but how do we get the problems addressed appropriately in the absence of other flags to jhd or indeed avoid a misdiagnosis from her paediatrician of something else?

My son was examined, tested and studied for 10 days as an in-patient in order to eliminate CJD, Wilson’s disease, Gaucher’s disease, Niemann-Pick type C and a variety of other neurological possibilities. He was diagnosed with Young Onset HD 3 months later and with a CAG repeat count of 56.

"He is v slow to categorise anything saying her behaviours are not indicative of neurodevelopmental problems eg Adhd."

Have you noticed that TV Dramas and Soaps occasionally attempt to create a platform for the discussion of children’s medical issues. Currently, “The A Word” [BBC1 9pm Tuesday] and EastEnders [most weekday nights] – the Autistic Spectrum and Brain\Neurological damage are being played out and the different family reactions are interesting to take note of, even in an acting performance.

Best wishes

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Old 05-04-16, 10:26 PM   #3
toosh
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Default Re: 50/50 jhd contacts? Behaviours!

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Originally Posted by nightowl View Post
Evening all. I was checking in to see any recent posts here re Jhd. Very quiet...

Set me wondering if anyone has much to say on this or not here, away from the boards ; and where they as parents, of children and young people may meet to do so?

Our lass is still going through turbulent times still and I feel is quite psychologically and emotionally under a huge pressure resulting in very challenging behaviours at home. Very hard to respond appropriately as we are nowhere near maturity/ consent or closer to knowing if Jhd is indeed starting to unravel itself.

It is so very hard to not feel ridiculed by others who barely see these issues in her. But they are crippling our quality of life and how we plan or anticipate 'what next?' even day to day.

Also the ' generic' carers group or those that cater for parenting disabled children causes me some uncertainty. I can't give an explanation about daughters circumstances as the whole premise of Jhd is ' its their story not mine' and her private life and inheritance should be totally private or at the very least on a need to know basis for reasons of care etc.

I know its a minefield but how do we get the problems addressed appropriately in the absence of other flags to jhd.or indeed avoid a misdiagnosis from her paediatrician of something else? He is v slow to categorise anything saying her behaviours are not indicative of neurodevelopmental problems eg Adhd . We are in contact with genetics and started a psychology asessment recently. Our daughter is 6 and
by the way I am talking extreme stuff not kiddies tantrums.

Deep breath. Thanks for reading again!
Are you on Facebook? Just wondering as there are a few people on there who's children have JHD, Might be worth contacting them to compare notes if that is possible
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