Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Juvenile Huntington’s Disease

Juvenile Huntington’s Disease Forum concerning all aspects of JHD

Reply
 
Thread Tools Display Modes
Old 27-10-17, 06:56 PM   #1
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,098
Default Pain, Itching, Sleeping difficulties, Psychosis and Tics

.
I find it remarkable that there have been no postings in this JHD category since February of this year. I realise that the youngsters themselves are getting on with their lives and probably interacting on HDYO.

Here’s a current study relating, apparently, to common but unrecognized JHD symptoms:

A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington’s disease

They only looked at pain, itching, sleeping difficulties, psychosis and tics.

Disrupted sleep was the most prevalent symptom (87%) followed by
Tics - brief, repetitive, spasm-like movements or vocalizations such as grunts, coughs, or sniffs (78%)
Pain (69%)
Itching (60%) and
Psychosis - hallucinations or delusions (39%).

It states that 42 surveys were completed but several were excluded because the age of diagnosis was beyond 21 years of age (n = 4) or there was no CAG repeat given to confirm their diagnosis (n = 5). So, there were 33 JHD individuals, 18 male and 15 female.

That, to me, seems to indicate a somewhat lackadaisical approach to a published study - that 9 youngsters were outside the scope of JHD definition. That then leaves a very small number to eventually make such a definite pronouncement about JHD symptoms - although everyone in a JHD family may agree with their findings.

They do admit to several limitations impacting on their study:

1st: the definition of JHD as diagnosed before 21 years old may under-represent individuals whose symptoms began in their late teen years but were diagnosed after the age of 21, as diagnosis may be delayed.

2nd: the prevalence of symptoms in the JHD population was not compared with normative data. For instance, sleep disturbance has been quantified as 12% of school-aged children (aged 11–15 years) [22], and 37% of 4–6 year olds have been reported to have recurrent leg pain often described as ‘growing pains’.

3rd:Caregivers may have had difficulty recognizing some of the symptoms, particularly in distinguishing tics from other motor abnormalities, or pain from non-dermatologic itching.

4th: limitations specific to the use of surveys. A survey-based study does not include direct examination of the patient, which may have aided in confirmation of the JHD diagnosis and symptomatology.

5th: surveys rely upon self-selection for participation, and the group that chose to complete the survey may over-represent the frequency of symptoms.

6th: a small sample size of 33 individuals may be inadequate to represent the broader population suffering from the disease.

Then they try to dig themselves out of a hole: “Nevertheless, in the context of an ultra-rare disease, this sample size is comparably large.”

There is, however, a valid result from this study in that: “Simply providing awareness of these symptoms to the medical community can help to improve clinical assessments by inquiring about these symptoms as many Caregivers may also tend to discount certain symptoms such as itching to something other than JHD.”

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 16-11-17, 10:42 PM   #2
nightowl
Approved Member
 
Join Date: Jul 2013
Location: Please ask.
Posts: 43
Send a message via Yahoo to nightowl
Default Re: Pain, Itching, Sleeping difficulties, Psychosis and Tics

Thanks Allan. Yes it is very very quiet here isnt it? I hope thats a good thing but I do find the lack of conversations about children in HD families a little disconcerting. I guess its just too much or too complex to think through but I do wish more attention was spent on them.
nightowl is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 12:13 PM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA