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Juvenile Huntington’s Disease Forum concerning all aspects of JHD

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Old 12-07-14, 06:31 AM   #1
nightowl
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Default mum sleep deprived....any others?

Struggling with young one still. Looking for other parents/teens/carers with children and Jhd in their family of origin. Any one out there with experiences of sleep problems or night time hyperactivity either.?
There does not seem to be any mention of this in books and its hard to find support from childrens services that can help or are relevant. We have not had more than three unbroken nights in three years sometimes it can be between 4 and 8 wake up calls and still up with the birds.
Too young to diagnose adhd or anything it seems.Our child has same routines no stimulants and bedtime by 8 with meds. Melatonin works eventually to help first few hours sleep then we are awake again. If we don't use Melatonin then sleep can take till 11pm with waking three hours later. Adenoids have been removed so it now can't be sleep apnoea.
Clearly not ideal and I know a common problem generally but this and the problems in day time are crippling me. I need respite but can't access this from friends due to the fact nobody wants waking all night!
Please do share your experiences from infancy onwards.
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Old 12-07-14, 01:30 PM   #2
Allan
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Default Re: mum sleep deprived....any others?

Hi there

I’ve been sitting here pondering and, in truth, waiting to see if anyone else responds to your calls for help. It certainly looks like you are in a very unique situation with your adopted children.

Many members of this message board will be silently asking similar questions without being able to reply to your predicament – well, not your situation but that of your adopted children. It’s very young for your GP to be prescribing them with medication for something that is only observed as irregular or non-sleeping patterns – even though it might be extreme. Although it might be a JHD symptom no one can be absolutely certain that HD is the only cause of sleepless nights.

Whilst requesting advice and info from parents of children with JHD symptoms and looking ahead to ADHD it seems that you are in a crisis of negative events. We, here on the mb, are non-professionals so as well as dealing with our everyday practical issues we are also very emotive within our HD family situations. It is strange that few people have responded to your posts – almost a year apart. I believe strongly that you should continue to search for the answers you want within the medical profession.

My son is 27 and has become almost nocturnal – so he does sleep but this has created a sort of critical social demise for everyone else as his day begins with breakfast at 5pm! Socially, this is just as bad as “sleepless nights” and we are all looking for similar answers in our own family situations. He has an upcoming appointment for a Sleep Study [not at Papworth]:

http://www.papworthrssc.nhs.uk/sleep...olysomnography
http://www.papworthrssc.nhs.uk/sleep...s-research.php

Sleep disturbances are common in Huntington’s disease and are often characterized by disruption of day-night patterns. In general, these sleep disturbances are attributed to factors of comorbidity (depression, mania), medication, or specific symptoms such as chorea or dystonia. Circadian sleep is regulated by the “biological clock” or “pacemaker” of the suprachiasmatic nucleus. This pacemaker stimulates melatonin synthesis in the pineal gland. Clock genes play a central role in this molecular oscillation process.

Suprachiasmatic Nucleus Neuropeptide Expression in Patients with Huntington’s Disease
www.journalsleep.org/ViewAbstract.aspx?pid=28741

Disintegration of the Sleep-Wake Cycle and Circadian Timing in Huntington's Disease
[www.jneurosci.org/content/25/1/157.long]

You can view the full texts of these scientific medical articles online or download them as PDF files. If you read amongst the scientific jargon it becomes apparent how difficult it is to solve these sleep issues in a general discussion - or with medication.

Good luck in your quest ………
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Old 12-07-14, 08:47 PM   #3
Joseharry
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Default Re: mum sleep deprived....any others?

Allan,
Being the genius that you are,once again I think you may have hit the nail on the head regarding newcomers.
None of us are experts, wading through the treacle of our own lives so much of the time and learning as we go.
We really are a very small group of people who desperately need help.
Many of us members of the MB just dont have the answers for the newcomers and often no experience of thier circumstances and so ignore them or offer sympathy but no practical advice.
What can we do ? Any ideas ?
We need a Trish!
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Old 12-07-14, 09:06 PM   #4
nightowl
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Default Re: mum sleep deprived....any others?

Quote:
Originally Posted by Joseharry View Post
Allan,
Being the genius that you are,once again I think you may have hit the nail on the head regarding newcomers.
None of us are experts, wading through the treacle of our own lives so much of the time and learning as we go.
We really are a very small group of people who desperately need help.
Many of us members of the MB just dont have the answers for the newcomers and often no experience of thier circumstances and so ignore them or offer sympathy but no practical advice.
What can we do ? Any ideas ?
We need a Trish!
Thank you both.The links are good.I will try them. Essentially wanting some experiences and background so Ican try grinding money from social services in after adoption to help us all.I will keep checking for anecdotal offerings from the boards.xx
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Old 13-07-14, 08:19 PM   #5
toosh
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Default Re: mum sleep deprived....any others?

Quote:
Originally Posted by Allan View Post
Hi there

I’ve been sitting here pondering and, in truth, waiting to see if anyone else responds to your calls for help. It certainly looks like you are in a very unique situation with your adopted children.

Many members of this message board will be silently asking similar questions without being able to reply to your predicament – well, not your situation but that of your adopted children. It’s very young for your GP to be prescribing them with medication for something that is only observed as irregular or non-sleeping patterns – even though it might be extreme. Although it might be a JHD symptom no one can be absolutely certain that HD is the only cause of sleepless nights.

Whilst requesting advice and info from parents of children with JHD symptoms and looking ahead to ADHD it seems that you are in a crisis of negative events. We, here on the mb, are non-professionals so as well as dealing with our everyday practical issues we are also very emotive within our HD family situations. It is strange that few people have responded to your posts – almost a year apart. I believe strongly that you should continue to search for the answers you want within the medical profession.

My son is 27 and has become almost nocturnal – so he does sleep but this has created a sort of critical social demise for everyone else as his day begins with breakfast at 5pm! Socially, this is just as bad as “sleepless nights” and we are all looking for similar answers in our own family situations. He has an upcoming appointment for a Sleep Study [not at Papworth]:

http://www.papworthrssc.nhs.uk/sleep...olysomnography
http://www.papworthrssc.nhs.uk/sleep...s-research.php

Sleep disturbances are common in Huntington’s disease and are often characterized by disruption of day-night patterns. In general, these sleep disturbances are attributed to factors of comorbidity (depression, mania), medication, or specific symptoms such as chorea or dystonia. Circadian sleep is regulated by the “biological clock” or “pacemaker” of the suprachiasmatic nucleus. This pacemaker stimulates melatonin synthesis in the pineal gland. Clock genes play a central role in this molecular oscillation process.

Suprachiasmatic Nucleus Neuropeptide Expression in Patients with Huntington’s Disease
www.journalsleep.org/ViewAbstract.aspx?pid=28741

Disintegration of the Sleep-Wake Cycle and Circadian Timing in Huntington's Disease
[www.jneurosci.org/content/25/1/157.long]

You can view the full texts of these scientific medical articles online or download them as PDF files. If you read amongst the scientific jargon it becomes apparent how difficult it is to solve these sleep issues in a general discussion - or with medication.

Good luck in your quest ………
You are spot on Allan. I read Nightowl's posts but obviously not having had children myself felt I was qualified to reply. I did think about referring to a friend of mine's little girl who is nearly 3 years old. Doesn't nap through the day. Goes to bed at 11pm and is awake and wanting mummy to play with her at 2am for at least 2 hours. So these things happen with children and it may not be HD that is the cause.

Toosh
XXX
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Old 13-07-14, 08:20 PM   #6
toosh
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Default Re: mum sleep deprived....any others?

Quote:
Originally Posted by toosh View Post
You are spot on Allan. I read Nightowl's posts but obviously not having had children myself felt I was qualified to reply. I did think about referring to a friend of mine's little girl who is nearly 3 years old. Doesn't nap through the day. Goes to bed at 11pm and is awake and wanting mummy to play with her at 2am for at least 2 hours. So these things happen with children and it may not be HD that is the cause.

Toosh
XXX
Oops that should read not qualified to reply!!
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Old 17-07-14, 09:31 PM   #7
nightowl
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Default Re: mum sleep deprived....any others?

Thx Jaqueline for taking time to reply.
Hope your son is enjoying a bit more socially in the sunshine..
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Old 11-11-15, 03:38 PM   #8
saturn
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Default Re: mum sleep deprived....any others?

Quote:
Originally Posted by nightowl View Post
Struggling with young one still. Looking for other parents/teens/carers with children and Jhd in their family of origin. Any one out there with experiences of sleep problems or night time hyperactivity either.?
There does not seem to be any mention of this in books and its hard to find support from childrens services that can help or are relevant. We have not had more than three unbroken nights in three years sometimes it can be between 4 and 8 wake up calls and still up with the birds.
Too young to diagnose adhd or anything it seems.Our child has same routines no stimulants and bedtime by 8 with meds. Melatonin works eventually to help first few hours sleep then we are awake again. If we don't use Melatonin then sleep can take till 11pm with waking three hours later. Adenoids have been removed so it now can't be sleep apnoea.
Clearly not ideal and I know a common problem generally but this and the problems in day time are crippling me. I need respite but can't access this from friends due to the fact nobody wants waking all night!
Please do share your experiences from infancy onwards.
I am sorry to here your problem, I know it well my wife had a similar problem I was lucky to have been given one of these fitness tracker watches for myself, and it had a built in sleep and pulse tracker, it uploaded to a smartphone, I managed to get my wife to agree to wear it and over a month I then had some figures to show the GP to understand how much of a problem it was, not every one is lucky enough to get one for free and they can cost over £50 so not a try it and see option, the Gp then referred to a psychiatirst who went though a whole list of medications and we could observe the effect 12 drugs later we had a cocktail that workded!
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Old 20-07-16, 11:23 PM   #9
nightowl
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Default Re: mum sleep deprived....any others?

thats a great idea Saturn if she will wear it. At present we are having very late nights and melatonin is not affecting a bit.
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Old 04-08-16, 08:07 PM   #10
wanda the mermaid
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Default Re: mum sleep deprived....any others?

I do feel for greatly.
You don't say where you live but do you have support group near you perhaps?
Or even an SHDA?
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