#WeLDNs - Tuesday 1st September 2015 8:30pm (GMT Standard Time) Fragile X Syndrome: Health and Behaviour

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Hosted by WeLDnurses using #WeLDNs

Fragile X Syndrome is the most common inherited cause of learning disabilities, affecting approximately 1 in 4000 males and 1 in 6000 females.The condition is associated with a range of challenges with attention, behaviour and language. However, the condition is also associated with relative learning strengths which can be harnessed. Many individuals with Fragile X exhibit autistic-like behaviour, such as gaze avoidance and hand-flapping,which may be related to anxiety or hyperarousal. 

For a substantial minority of individuals with Fragile X (approximately 30%) these behaviours meet the criteria for an additional diagnosis of autism: making the condition the most common single-gene cause of autism. Importantly, though, there are important differences between the drivers and profiles of autistic behaviour in fragile X and the population of individuals with autism more generally.

This chat will be an excellent opportunity to speak with experts in the field about characteristics of the condition, in order to better recognise and support those affected.

You can find information about Fragile X Syndrome on their website: www.fragilex.org.uk

In particular, it would be useful to read their introductory booklet (Fragile X Syndrome: An Introduction) which gives an overview of the condition: http://www.fragilex.org.uk/#!booklets/csl0

Also, you can read a piece about Fragile X Syndrome and autism, here: http://www.fragilex.org.uk/#!fragile-x-and-autism/c1amt





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 Chat Summary

 

Health and Behaviour in Fragile X Syndrome

Fragile X Syndrome is the most common inherited cause oflearning disabilities, affecting around 15,000 people across the UK. The condition also has a strong link to autistic-like behaviour, and is the underlying cause of up to 1 in 20 cases of autism. Of course, every person with Fragile X is different, but we know that there are certain features (including challenges and strengths) that people with the condition are more likely to experience. We passionately believe that understanding these features is essential for those providing support, as it can help to highlight the causes of challenges, as well as directing to areas for proactive support.

Therefore, one of our key aims as a charity is to provide professionals with the information about fragile X to empower them in supporting people with Fragile X and their families. For this reason, the opportunity to speak with such an active community of learning disability professionals about their experiences and needs, via a #WeLDNs chat, was invaluable.

Fragile X and Anxiety

The key things to know when working with someone with FragileX, is the key role that anxiety plays. One research project (#ebp: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057014/)identified around 80% of people with Fragile X met the clinical criteria for ananxiety disorder. This anxiety can be triggered by different things for different people, and can manifest as anything from shyness to aggressive outbursts. The lists below give illustrative ratings from people with Fragile X about the triggers and effects of their anxiety.


We know that a common anxiety trigger for many people with Fragile X can be social situations, especially being the focus of attention, for instance, during a medical assessment. We have been asked to share the experience of one family whose son would deny his painful health condition (“I am fine!”) at the doctors, in order to avoid having to be checked.

What helps?

Simple changes can make a big difference. For some people with Fragile X, it can be helpful to know that direct eye contact can be challenging, so should not be prompted. Also, regulating your own direct eye contact can sometimes be helpful. Anecdotally, we have also experienced that asking questions indirectly (e.g. “The pain is...” rather than “Where is the pain?”) can help people to feel less in the spotlight. Allowing space and timeis really important to allow a person to become comfortable with the situation.

As highlighted above, changes in routine can be challenging for people. Clear structures for activities can help to reduce some of the uncertainty and anxiety of situations. Visual schedules (showing the whole process from start to end) can be an especially useful resource for people with fragile X, for whom holistic processing visual recognition is often a strength.

Many people with fragile X experience sensory sensitivities,which can make busy or noisy environments (like waiting rooms) overwhelming. Iloved Sally Wilson’s idea (from the chat) to allow people to wait away from the waiting room, and be given a call on their mobile when their appointment is ready, in order to avoid that challenging environment!

Of course, it is key to understand each individual and theirlikes and dislikes, in order to best support them.

Fragile X and Autism

Many of the behaviours which are associated with having fragile X (gaze avoidance, hand flapping, repetitive speech) are similar to those seen in people with autism. As a result, around 30% of people with Fragile X meet the criteria for a diagnosis of autism; a percentage which raises much higher when you consider all autism spectrum conditions. The debate continues as to whether these characteristics are “truly” autism. However, the important message from the research seems to be that in fragile X, autism-like behaviours are driven by a combination of learning disability and anxiety, whereas the causes of differences for people with autism are more varied.

What to know moreabout Fragile X and autism?

 http://www.fragilex.org.uk/#!fragile-x-and-autism/c1amt (page includes links to relevant research articles #ebp)

Fragile X and Health

There are a number of health conditions that are more common in people with Fragile X. These include:

  • Around 10% of people with Fragile X experience seizures, and many more show atypical EEG patterns. This may be more common in people with fragile X who are also diagnosed with autism.
  • There are number of vision difficulties that aremore common in people with Fragile X, including strabismus and refractive errors. Frequent eye assessments are essential to prevent undetected sensory barriers to learning.
  • Around 85% of people with Fragile X experience at least one episode of acute otitis media (ear infections), and for many these are recurrent. Ear infections are most common in early childhood (0-3 years), though may also develop later. This susceptibility may be due to the tubes in the ear being flattened and/or more collapsible, leading to drainage problems and accumulation of bacteria. It is important that these are detected and treated quickly as hearing difficulties may exacerbate language delays.
  • Loose connective tissue and hypotonia isassociated with fragile X and can have broad effects, from:
    • Gastrointestinal issues including: reflux, constipation, diarrhoea, vomiting (especially when anxious or excited).
    • Looseness in the heart valves (mitral valveprolapse)
    • Loose and bendy joints leading to difficultieswith motor skills

Knowing about these (and other associated) health features means that issues can be detected more quickly and possibly prevented. Painful conditions such as ear infections or reflux should always be investigated as a priority if there are changes in behaviour, as this may be a way of expressing discomfort.

Want to know moreabout medical issues in fragile X?

http://www.ncbi.nlm.nih.gov/pubmed/25287458 #ebp

Fragile X and Gender

Fragile X is caused by a change on the X chromosome. Girls and women have two X chromosomes, meaning that their ‘typical X’ can help to compensate for their ‘fragile X’. As a result, the effects for girls and womenare often less clear. However, it is important to note that there are some girls who experience more effects than some boys. In addition, even for those girls whose features are more subtle, there can be challenging effects which are often overlooked or missed. Features like shyness and difficulties with maths can have significant effects, even when able to otherwise lead independent lives. There are also some women with the gene variant who experience no noticeable effects of the condition.

Fragile X Diagnosis

The only way to diagnose fragile X is for a specific fragile X test to be conducted, typically via a blood test. We recommend that all people with autism are tested for a diagnosis of Fragile X. Fragile X is inherited from mothers who are carriers of smaller variants of the gene. There is a misconception that, because fragile X is inherited, there must be a family history in order to test for the condition, but this is not true. Fragile X can lay dormant through generations, or effects of the condition may have been missed or misdiagnosed. A correct diagnosis is important both for the person with the condition, but also for their wider family who may also have fragile X or may be carriers, with risks for associated health risks (http://www.fragilex.org.uk/#!carriers/ca7t)

Want to know moreabout diagnosis?

http://www.fragilex.org.uk/#!testing/c1j5a

How we can help

As a charity, we want to support people with fragile X, their families and all those who provide help and support to those with the condition. We have lots of information about the condition and our support workers can help to translate information about fragile X into strategies and suggestions for individual cases.

  • Sandra is our Support and Development worker in Scotland and can be contacted on 07825050072 or sandra@fragilex.org.uk
  • Wendy (wendy@fragilex.org.uk) is our specialist Support worker for child-related issues and Jane (jane@fragilex.org.uk) specialised in adult related issues. Both can be called at the office on01371875100.

We also run conferences, events and training (including eLearnng) so please do get in touch if you would like to know more!

Of course, we are also always here on twitter too:@fragilexuk

Thank you

Finally, a huge thanks to all those who took part in ourchat and to Daniel Marsden, who supported us with the organisation of the chat.Also, we are grateful to Professor Jeremy Turk, for his fabulous co-hosting skills and for his ongoing support for the Fragile X Community!


                             

Thanks to Becky Hardiman -CEO Fragile X Society (email : becky@fragilex.org.uk) for preparing this chat summary. It was an excellent mix of parental and professional expertise along with conversation and questioning, and this summary is a good reflection of this and a good overall introduction to the condition. 





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 #WeLDNs transcript

 
@fragilexuk
01 September 2015 20:30
Welcome! Tonight our chat is about Fragile X Syndrome, most common inherited cause of learning disability #WeLDNs
@WeLDnurses
01 September 2015 20:30
Welcome to the first #weldns chat of the autumn, hosted by @fragilexuk Can you say hello from where you are?
@fragilexuk
01 September 2015 20:30
Please do say hello if you are about! :) #WeLDNs
@salsa442
01 September 2015 20:30
@anne_feltonmh @helen_laverty @FernTodhunter Do feel free to join in and sure your views too, just remember the hashtag #WeLDNs ??
@salsa442
01 September 2015 20:31
RT @fragilexuk: Welcome! Tonight our chat is about Fragile X Syndrome, most common inherited cause of learning disability #WeLDNs
@salsa442
01 September 2015 20:31
Hi all it's Sal here, contemplating putting my central heating on in chilly Leicester! #waves #FragileX #WeLDNs
@helen_laverty
01 September 2015 20:31
@salsa442 @anne_feltonmh @FernTodhunter #weldns hashtag police and naughty step ready for me @samabdulla ?
@dmarsden49
01 September 2015 20:31
@WeLDnurses @fragilexuk Hi! This is Daniel in Rochester! #weldns
@salsa442
01 September 2015 20:31
RT @WeLDnurses: Welcome to the first #weldns chat of the autumn, hosted by @fragilexuk Can you say hello from where you are?
@fragilexuk
01 September 2015 20:31
@WeLDnurses @Becky_Hardiman and Wendy Bowler (Support Worker) tweeting from the @fragilexuk account tonight #WeLDNs
@cherylwilson2
01 September 2015 20:32
RT @WeLDnurses: #weldns chat at 8-30 with @fragilexuk All prof. will have their social media guidance. Here is @nmcnews version http://t.co…
@fragilexuk
01 September 2015 20:32
Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@TurkJeremy2
01 September 2015 20:32
#weldns Good evening everybody. This is Jeremy Turk. Delighted to be joining you all.
@ross_6479_RNLD
01 September 2015 20:32
@WeLDnurses @fragilexuk hiya, Ross here, #waves from Northumberland #WeLDNs
@salsa442
01 September 2015 20:32
@helen_laverty @anne_feltonmh @FernTodhunter @samabdulla The hashtag police are always on duty! ?? #WeLDNs
@helen_laverty
01 September 2015 20:32
@helen_laverty & @PCConf waving with tea from Lincoln #WeLDNs
@salsa442
01 September 2015 20:32
RT @fragilexuk: Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@JASomerville
01 September 2015 20:32
@WeLDnurses @fragilexuk Joe here from Edinburgh, Scottish summer rain here! Happy new term everyone! #weldns
@WeLDnurses
01 September 2015 20:32
We will be using the usual #weldns hashtag tonight, but @fragilexuk will be asking the questions to stimulate the conversation.
@fragilexuk
01 September 2015 20:33
RT @TurkJeremy2: #weldns Good evening everybody. This is Jeremy Turk. Delighted to be joining you all.
@cherylwilson2
01 September 2015 20:33
RT @WeLDnurses: Welcome to the first #weldns chat of the autumn, hosted by @fragilexuk Can you say hello from where you are?
@ross_6479_RNLD
01 September 2015 20:33
RT @fragilexuk: Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@fragilexuk
01 September 2015 20:33
Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@salsa442
01 September 2015 20:33
RT @WeLDnurses: We will be using the usual #weldns hashtag tonight, but @fragilexuk will be asking the questions to stimulate the conversat…
@lousie198964
01 September 2015 20:33
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@ChrisHardyRNLD
01 September 2015 20:33
@WeLDnurses hello! I'm Chris and I'm from Derbyshire :) just lurking tonight #WeLDNs
@DrUmeshPrabhu
01 September 2015 20:33
RT @WeLDnurses: We will be using the usual #weldns hashtag tonight, but @fragilexuk will be asking the questions to stimulate the conversat…
@JASomerville
01 September 2015 20:33
RT @fragilexuk: Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@lousie198964
01 September 2015 20:34
RT @TurkJeremy2: #weldns Good evening everybody. This is Jeremy Turk. Delighted to be joining you all.
@salsa442
01 September 2015 20:34
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@ross_6479_RNLD
01 September 2015 20:34
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@WeLDnurses
01 September 2015 20:34
Don't forget the evidence based practice challenge, if you can link to published evidence please add the #ebp so we can highlight it #weldns
@ross_6479_RNLD
01 September 2015 20:34
RT @WeLDnurses: We will be using the usual #weldns hashtag tonight, but @fragilexuk will be asking the questions to stimulate the conversat…
@fragilexuk
01 September 2015 20:35
Obviously all people w/ FX individuals & different- but tonight want to chat about patterns we see in health/ behaviour #WeLDNs (1/2)
@WeLDnurses
01 September 2015 20:35
We'll now hand over to @fragilexuk to ask those #weldns questions!
@fragilexuk
01 September 2015 20:36
As understanding what strengths/ challenges might be more likely can help to identify challenges and provide support #WeLDNs (2/2)
@cherylwilson2
01 September 2015 20:36
RT @WeLDnurses: We'll now hand over to @fragilexuk to ask those #weldns questions!
@fragilexuk
01 September 2015 20:36
Interested to know, what things do you find it useful to know about a person’s diagnosis? #WeLDNs
@WeLDnurses
01 September 2015 20:36
Happy new term indeed #weldns https://t.co/cvBHWhqRQZ
@salsa442
01 September 2015 20:36
RT @fragilexuk: Interested to know, what things do you find it useful to know about a person’s diagnosis? #WeLDNs
@WeLDnurses
01 September 2015 20:36
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@lousie198964
01 September 2015 20:36
RT @fragilexuk: Interested to know, what things do you find it useful to know about a person’s diagnosis? #WeLDNs
@WeLDnurses
01 September 2015 20:37
RT @fragilexuk: Interested to know, what things do you find it useful to know about a person’s diagnosis? #WeLDNs
@salsa442
01 September 2015 20:37
@fragilexuk If the person has #fragilex and #autism it may make a difference in care planning and delivery #WeLDNs
@salsa442
01 September 2015 20:38
@field_rosie I've got a hoody on and have *ssshhh whispers* also boosted central heating!! #WeLDNs
@TurkJeremy2
01 September 2015 20:38
#weldns Do many of you know and help any individuals who have fragile X syndrome?
@WeNurses
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/Epl9J1yZR7 join to share and learn about Fragile X Syndrome via #WeLDNs
@WeAHPs
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/aqppIeG4bI join to share and learn about Fragile X Syndrome via #WeLDNs
@WeCYPnurses
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/Ti64IcU3Yi join to share and learn about Fragile X Syndrome via #WeLDNs
@WeCommissioners
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/SCyhjf51sQ join to share and learn about Fragile X Syndrome via #WeLDNs
@WePharmacists
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/RfRQRFCYHa join to share and learn about Fragile X Syndrome via #WeLDNs
@WeHealthVisitor
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/jPeuCNnlPO join to share and learn about Fragile X Syndrome via #WeLDNs
@WeMHNurses
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/lR8mcFuIcH join to share and learn about Fragile X Syndrome via #WeLDNs
@WeMidwives
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/CabaK0Ic3V join to share and learn about Fragile X Syndrome via #WeLDNs
@WeParamedics
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/2OcGvlYDuL join to share and learn about Fragile X Syndrome via #WeLDNs
@WeMedSts
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/KJ5RQitoCh join to share and learn about Fragile X Syndrome via #WeLDNs
@WeDocs
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/kd2R3g76Az join to share and learn about Fragile X Syndrome via #WeLDNs
@WeDistrictNurse
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/YgnErXaYZx join to share and learn about Fragile X Syndrome via #WeLDNs
@WeSchoolNurses
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/C4DNL7hroo join to share and learn about Fragile X Syndrome via #WeLDNs
@WeGPNs
01 September 2015 20:38
Chatting now @WeLDnurses with @fragilexuk pre chat here http://t.co/sEYZJS3UyN join to share and learn about Fragile X Syndrome via #WeLDNs
@HealthUKTD
01 September 2015 20:38
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@dmarsden49
01 September 2015 20:38
@fragilexuk For me working in @ekhuft I need to know more about how we can make adjustments for them to ensure timely treatment #weldns
@salsa442
01 September 2015 20:38
RT @TurkJeremy2: #weldns Do many of you know and help any individuals who have fragile X syndrome?
@JASomerville
01 September 2015 20:39
@fragilexuk always found differences in sensory needs vs hyper arousal across children I worked with interesting #weldns
@WeLDnurses
01 September 2015 20:39
RT @salsa442: @fragilexuk If the person has #fragilex and #autism it may make a difference in care planning and delivery #WeLDNs
@salsa442
01 September 2015 20:39
@TurkJeremy2 I have supported a number of people with #fragilex over the years #WeLDNs
@ross_6479_RNLD
01 September 2015 20:39
RT @TurkJeremy2: #weldns Do many of you know and help any individuals who have fragile X syndrome?
@salsa442
01 September 2015 20:40
RT @JASomerville: @fragilexuk always found differences in sensory needs vs hyper arousal across children I worked with interesting #weldns
@helen_laverty
01 September 2015 20:40
RT @JASomerville: @fragilexuk always found differences in sensory needs vs hyper arousal across children I worked with interesting #weldns
@fragilexuk
01 September 2015 20:40
@salsa442 And making changes e.g. not forcing eye contact can be particularly helpful for helping people to overcome their anxiety #WeLDNs
@salsa442
01 September 2015 20:40
@fragilexuk That's been my experience, very high anxiety levels in the people I've supported #WeLDNs
@fragilexuk
01 September 2015 20:41
@JASomerville Absolutely, the anxiety/hyperarousal is core of many of the behavioral patterns #WeLDNs
@Lauren_OT
01 September 2015 20:41
@WeLDnurses @fragilexuk hi everyone I've just started as an OT in a low secure LD service, lurking for the chat tonight! #weldns
@dmarsden49
01 September 2015 20:41
@salsa442 @TurkJeremy2 Similar. I had a nurse present details of a patients disability today, which isn't always forthcoming #weldns
@fragilexuk
01 September 2015 20:41
@JASomerville out of interest, how did hyperarousal manifest? #WeLDNs
@salsa442
01 September 2015 20:41
@Lauren_OT @WeLDnurses @fragilexuk Lovely to have you with us, feel free to share your views too using #WeLDNs
@TurkJeremy2
01 September 2015 20:42
Yes, enormously high anxiety levels are very common and often underlie any challenging behaviours. #weldns
@WeLDnurses
01 September 2015 20:42
RT @JASomerville: @fragilexuk always found differences in sensory needs vs hyper arousal across children I worked with interesting #weldns
@fragilexuk
01 September 2015 20:42
@salsa442 Visual memory/ learning a strength in FX and can be a particularly useful way of helping to plan/ manage the anxiety #WeLDNs
@salsa442
01 September 2015 20:43
Really useful way to help people with #FragileX who may be experiencing anxiety #WeLDNs #VisualMemory https://t.co/YjwPMzOEla
@field_rosie
01 September 2015 20:44
@TurkJeremy2 @salsa442 #weldns I have only known 1 young male, but know a lot of people tested.
@WeLDnurses
01 September 2015 20:44
@Lauren_OT @fragilexuk We welcome all lurkers to #weldns chats. Feel free to jump in when you are ready!
@ross_6479_RNLD
01 September 2015 20:44
@fragilexuk I guess I'd be interested in what that diagnosis means to the ind. and how I could use that info to best support them #weldns
@WeLDnurses
01 September 2015 20:44
RT @TurkJeremy2: Yes, enormously high anxiety levels are very common and often underlie any challenging behaviours. #weldns
@fragilexuk
01 September 2015 20:44
@dmarsden49 @salsa442 @TurkJeremy2 do you often get given details of a person's diagnosis? Curious #WeLDNs
@TurkJeremy2
01 September 2015 20:44
I think its important to bear in mind that there are many underlying causes of anxiety. #weldns
@JASomerville
01 September 2015 20:44
@fragilexuk often through frequently seeking adult interaction, responses could never satisfy. Peer relationships then challenging #weldns
@alina_negrus
01 September 2015 20:45
@TurkJeremy2 I meet several patients and their families during clinical practice #WeLDNs
@WeLDnurses
01 September 2015 20:45
RT @field_rosie: @TurkJeremy2 @salsa442 #weldns I have only known 1 young male, but know a lot of people tested.
@salsa442
01 September 2015 20:45
@fragilexuk @dmarsden49 @TurkJeremy2 In acute care diagnosis info can be crucial when planning/managing acute admissions in my exp #WeLDNs
@helen_laverty
01 September 2015 20:45
RT @salsa442: Really useful way to help people with #FragileX who may be experiencing anxiety #WeLDNs #VisualMemory https://t.co/YjwPMzOEla
@fragilexuk
01 September 2015 20:45
@ross_6479 e.g. there are particular health conditions associated with FX. E.g. in young children ear infections v common (1/2) #WeLDNs
@TurkJeremy2
01 September 2015 20:46
shyness, social anxiety, extreme sensory sensitivities...#weldns
@WeLDnurses
01 September 2015 20:46
Great question! What kind of environment do you work in @ross_6479 #weldns https://t.co/R1RW9vXPaA
@fragilexuk
01 September 2015 20:46
@ross_6479 & may be hidden cause of sudden behaviour changes. Knowing means know where to check 1st #WeLDNs
@salsa442
01 September 2015 20:47
@fragilexuk @ross_6479 Is there any research about why ear infections are so common? #curiousnurse #WeLDNs
@fragilexuk
01 September 2015 20:47
RT @salsa442: Really useful way to help people with #FragileX who may be experiencing anxiety #WeLDNs #VisualMemory https://t.co/YjwPMzOEla
@WeLDnurses
01 September 2015 20:47
@alina_negrus @TurkJeremy2 In what environment do you practice? #weldns
@WeLDnurses
01 September 2015 20:48
RT @TurkJeremy2: #weldns Do many of you know and help any individuals who have fragile X syndrome?
@TurkJeremy2
01 September 2015 20:48
Great quote from gentleman on fragile X society video. "Now I know what I have and I can get on with my life" #weldns
@ross_6479_RNLD
01 September 2015 20:48
@fragilexuk using this information will help to deliver best available care as quick as poss #weldns
@cartleyhole
01 September 2015 20:48
RT @fragilexuk: Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@cartleyhole
01 September 2015 20:48
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@fragilexuk
01 September 2015 20:48
@ross_6479 Also, knowing core role of anxiety important & ways manifest. e.g. been asked to share experience of one gentleman (1/2) #WeLDNs
@salsa442
01 September 2015 20:49
@TurkJeremy2 I'd be interested to know what % people with fragile x are diagnosed before adulthood,&how many are not #WeLDNs
@alina_negrus
01 September 2015 20:49
@WeLDnurses child and adolescent mental health, neuro developmental disorders team #weldns
@fragilexuk
01 September 2015 20:49
@ross_6479 who denied felt unwell when went to doctors because was so scared of having an assessment #WeLDNs #anxiety
@salsa442
01 September 2015 20:49
RT @ross_6479: @fragilexuk using this information will help to deliver best available care as quick as poss #weldns
@WeSchoolNurses
01 September 2015 20:49
@WeLDnurses @Lauren_OT @fragilexuk lurking and enjoying the chat #weldns
@fragilexuk
01 September 2015 20:50
@salsa442 @ross_6479 Basically tubes more collapsible so fluid does not drain properly & bacteria can grow #WeLDNs
@ross_6479_RNLD
01 September 2015 20:50
@WeLDnurses I'm a student so working across various placement settings #weldns
@TurkJeremy2
01 September 2015 20:50
Hopefully most with fragile X syndrome are diagnosed when quite young - the the specific genetic test does have to be requested. #weldns
@HealthUKTD
01 September 2015 20:50
RT @TurkJeremy2: #weldns Do many of you know and help any individuals who have fragile X syndrome?
@dmarsden49
01 September 2015 20:51
@salsa442 @TurkJeremy2 Really interesting question #weldns
@JASomerville
01 September 2015 20:51
RT @salsa442: @TurkJeremy2 I'd be interested to know what % people with fragile x are diagnosed before adulthood,&how many are not #WeLDNs
@salsa442
01 September 2015 20:51
@fragilexuk @ross_6479 IMExp a common theme when people with LD,fragile x,autism & assoc anxiety are faced with GP & hospital care #WeLDNs
@WeLDnurses
01 September 2015 20:51
@WeSchoolNurses @Lauren_OT @fragilexuk Feel free to join in when you're ready #weldns
@TurkJeremy2
01 September 2015 20:51
Apologies for not saying earlier. I'm a child & adolescent psychiatrist helping young people with developmental disabilities #weldns
@alina_negrus
01 September 2015 20:52
@TurkJeremy2 could you tell us more about gender differences in fragile X #weldns
@ross_6479_RNLD
01 September 2015 20:52
@fragilexuk so important to consider this when working with carers too #weldns
@fragilexuk
01 September 2015 20:52
@salsa442 @TurkJeremy2 hard to tell suspect many missed. Colin Reilly did survey recently found FX, in childhood, av diagnosed ~3.5y #WeLDNs
@WeLDnurses
01 September 2015 20:52
RT @fragilexuk: @salsa442 @ross_6479 Basically tubes more collapsible so fluid does not drain properly & bacteria can grow #WeLDNs
@salsa442
01 September 2015 20:52
@fragilexuk @ross_6479 Thank you for this, really useful to know #healthchecks #healthassessments are so impt #WeLDNs
@Jugtastic67
01 September 2015 20:52
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@costallsk
01 September 2015 20:52
RT @fragilexuk: Fragile X is also related to autistic-like behaviour, and is underlying cause for up to ~1/20 cases autism (2-6%) #WeLDNs
@Jugtastic67
01 September 2015 20:52
RT @fragilexuk: Few Fragile X Facts to start us off: around 15,000 people in the UK (1/4000 males & 6000 females) #WeLDNs
@helen_laverty
01 September 2015 20:53
Do you think we spend too long looking at expected manifestations & forget physical health @fragilexuk #weldns definite links in DS & CHD
@JASomerville
01 September 2015 20:53
RT @salsa442: @fragilexuk @ross_6479 Thank you for this, really useful to know #healthchecks #healthassessments are so impt #WeLDNs
@JASomerville
01 September 2015 20:53
RT @helen_laverty: Do you think we spend too long looking at expected manifestations & forget physical health @fragilexuk #weldns definite …
@salsa442
01 September 2015 20:54
Great question here... #WeLDNs https://t.co/BY1f3yF1bo
@fragilexuk
01 September 2015 20:54
@ross_6479 absolutely. Often key is ensuring clear steps in assessments from start to finish (visual presentation can help) #WeLDNs
@TurkJeremy2
01 September 2015 20:54
Sadly some geneticists still believe you must have a positive family history to justify testing for fragile X syndrome. You don't. #weldns
@JASomerville
01 September 2015 20:54
RT @salsa442: Great question here... #WeLDNs https://t.co/BY1f3yF1bo
@WeLDnurses
01 September 2015 20:54
@TurkJeremy2 We understand you may have some references and links or could share. Please feel free to do so using #ebp #weldns
@costallsk
01 September 2015 20:54
@fragilexuk #weLDNs I've cared for adults with Fragile X who display extremely autistic behaviour & yet do not have the diagnosis.
@salsa442
01 September 2015 20:55
@helen_laverty @fragilexuk If we can address phys health e.g. ear infections,could improve anxiety/behav assoc w anxiety #WeLDNs #fragilex
@TurkJeremy2
01 September 2015 20:55
Absolutely. Physical health v important. Vision as well as hearing must be checked carefully. Also heart and circulation. #weldns
@WeLDnurses
01 September 2015 20:55
RT @alina_negrus: @TurkJeremy2 could you tell us more about gender differences in fragile X #weldns
@ross_6479_RNLD
01 September 2015 20:55
RT @helen_laverty: Do you think we spend too long looking at expected manifestations & forget physical health @fragilexuk #weldns definite …
@fragilexuk
01 September 2015 20:55
@ross_6479 direct questions (and therefore direct attention) can also be trigger for anxiety, changing way you ask can be helpful #WeLDNs
@fragilexuk
01 September 2015 20:56
@costallsk i.e. no dual diagnosis of autism? #WeLDNs
@salsa442
01 September 2015 20:56
@TurkJeremy2 Does this mean it can be a random genetic manifestation and not always inherited? #curious #WeLDNs
@WeLDnurses
01 September 2015 20:56
Why not, Sandy? (and welcome to the chat!) #weldns https://t.co/LCze01bQq0
@field_rosie
01 September 2015 20:56
@TurkJeremy2 @salsa442 #weldns having to request testing and not being offered is hard for some parents, depends on Leads Cons.
@salsa442
01 September 2015 20:56
#WeLDNs https://t.co/i19KZKDeKq
@TurkJeremy2
01 September 2015 20:57
Is always inherited - but might lay "dormant" for generations before showing itself #weldns
@fragilexuk
01 September 2015 20:57
@salsa442 @ross_6479 other health conditions more common inc. strabismus (~16%) & vision difficulties #WeLDNs
@lousie198964
01 September 2015 20:57
RT @fragilexuk: @salsa442 @ross_6479 other health conditions more common inc. strabismus (~16%) & vision difficulties #WeLDNs
@salsa442
01 September 2015 20:57
@tryingtobedad @TurkJeremy2 Can I ask what made you think it wasn't autism?I'd like to understand the differences #WeLDNs
@alina_negrus
01 September 2015 20:57
@TurkJeremy2 are seizures common in children with fragile X #WeLDNS
@WeLDnurses
01 September 2015 20:57
RT @salsa442: @TurkJeremy2 Does this mean it can be a random genetic manifestation and not always inherited? #curious #WeLDNs
@salsa442
01 September 2015 20:58
RT @field_rosie: @TurkJeremy2 @salsa442 #weldns having to request testing and not being offered is hard for some parents, depends on Leads …
@fragilexuk
01 September 2015 20:58
@salsa442 @ross_6479 often elasticated/ loose connective tissue can be issue too e.g. leading to GI problems- reflux, diarrhea #WeLDNs
@WeLDnurses
01 September 2015 20:58
RT @field_rosie: @TurkJeremy2 @salsa442 #weldns having to request testing and not being offered is hard for some parents, depends on Leads …
@helen_laverty
01 September 2015 20:58
@salsa442 @fragilexuk we def show new learners a picture of the syndrome but don't always look beyond behaviour #WeLDNs #devilsadvocate!??
@fragilexuk
01 September 2015 20:58
@salsa442 @helen_laverty Feeling unwell can be a trigger to anxiety and sometimes challenging behaviours #WeLDNs
@TurkJeremy2
01 September 2015 20:58
...the other is the consequence (autism) #weldns
@costallsk
01 September 2015 20:59
@fragilexuk #weLDNs No unfortunately but the traits and behaviours were there. Both individuals severe LDs 1/2
@dmarsden49
01 September 2015 20:59
RT @TurkJeremy2: Is always inherited - but might lay "dormant" for generations before showing itself #weldns
@ross_6479_RNLD
01 September 2015 20:59
@fragilexuk having this knowledge about ind. diagnosis will help us approach care in an appropriate holistic way = greater success #WeLDNs
@fragilexuk
01 September 2015 20:59
#WeLDNs #ebp #health #medical http://t.co/UGBd8flQ2u
@dmarsden49
01 September 2015 20:59
RT @salsa442: @tryingtobedad @TurkJeremy2 Can I ask what made you think it wasn't autism?I'd like to understand the differences #WeLDNs
@alina_negrus
01 September 2015 20:59
RT @TurkJeremy2: ...the other is the consequence (autism) #weldns
@TurkJeremy2
01 September 2015 21:00
Sorry, new to twitter! You can definitely have both autism and fragile X syndrome #weldns
@richardmills18
01 September 2015 21:00
RT @TurkJeremy2: Sorry, new to twitter! You can definitely have both autism and fragile X syndrome #weldns
@alina_negrus
01 September 2015 21:00
RT @TurkJeremy2: Sorry, new to twitter! You can definitely have both autism and fragile X syndrome #weldns
@lousie198964
01 September 2015 21:00
RT @fragilexuk: #WeLDNs #ebp #health #medical http://t.co/UGBd8flQ2u
@salsa442
01 September 2015 21:00
@TurkJeremy2 That's fascinating, I'd love to understand more how this happens #WeLDNs
@salsa442
01 September 2015 21:00
RT @TurkJeremy2: Is always inherited - but might lay "dormant" for generations before showing itself #weldns
@TurkJeremy2
01 September 2015 21:00
About 30% of those with fragile X syndrome have epilepsy #weldns
@costallsk
01 September 2015 21:01
@fragilexuk #weLDNs 2/2 The families refused further testing & service involvement. Did not want lots of tests
@lousie198964
01 September 2015 21:01
RT @fragilexuk: @salsa442 @helen_laverty Feeling unwell can be a trigger to anxiety and sometimes challenging behaviours #WeLDNs
@salsa442
01 September 2015 21:01
@tryingtobedad @TurkJeremy2 Thankyou for sharing that #WeLDNs
@salsa442
01 September 2015 21:01
RT @alina_negrus: @TurkJeremy2 are seizures common in children with fragile X #WeLDNS
@dmarsden49
01 September 2015 21:01
@fragilexuk @salsa442 @ross_6479 Can this also lead to volvulus https://t.co/LeGD8rsWu2 ?#WeLDNS
@fragilexuk
01 September 2015 21:01
@alina_negrus @TurkJeremy2 Around 10% people with FX experience seizures (exact estimates vary) #WeLDNs More have atypical EEG
@alina_negrus
01 September 2015 21:02
RT @TurkJeremy2: About 30% of those with fragile X syndrome have epilepsy #weldns
@TurkJeremy2
01 September 2015 21:02
Complex inheritance. Genetic abnormality can expand during reproduction - so offspring at greater risk of disabilities #weldns
@helen_laverty
01 September 2015 21:02
@fragilexuk @salsa442 need to ask @jo3grace for ideas here too #weldns
@WeLDnurses
01 September 2015 21:02
RT @fragilexuk: #WeLDNs #ebp #health #medical http://t.co/UGBd8flQ2u
@salsa442
01 September 2015 21:02
RT @TurkJeremy2: About 30% of those with fragile X syndrome have epilepsy #weldns
@ross_6479_RNLD
01 September 2015 21:02
RT @TurkJeremy2: Sorry, new to twitter! You can definitely have both autism and fragile X syndrome #weldns
@salsa442
01 September 2015 21:02
@TurkJeremy2 Don't apologise, no one would know you're new to it! #WeLDNs
@dmarsden49
01 September 2015 21:03
RT @fragilexuk: #WeLDNs #ebp #health #medical http://t.co/UGBd8flQ2u
@salsa442
01 September 2015 21:03
RT @fragilexuk: @alina_negrus @TurkJeremy2 Around 10% people with FX experience seizures (exact estimates vary) #WeLDNs More have atypical …
@fragilexuk
01 September 2015 21:03
@dmarsden49 @salsa442 @ross_6479 haven't heard of a link #WeLDNs
@helen_laverty
01 September 2015 21:03
Got to go folks sorry x catch up on the transcript later #weldns
@WeLDnurses
01 September 2015 21:03
RT @TurkJeremy2: About 30% of those with fragile X syndrome have epilepsy #weldns
@TurkJeremy2
01 September 2015 21:03
Haven't come across volvulus. But hernias more common as well as joint dislocation because of loose ligaments. #weldns
@lousie198964
01 September 2015 21:03
RT @fragilexuk: @dmarsden49 @salsa442 @ross_6479 haven't heard of a link #WeLDNs
@alina_negrus
01 September 2015 21:04
RT @TurkJeremy2: Haven't come across volvulus. But hernias more common as well as joint dislocation because of loose ligaments. #weldns
@salsa442
01 September 2015 21:04
@TurkJeremy2 Gosh I wish I'd spent more time in genetics classes... Do you have any references I could look up please? #WeLDNs
@TurkJeremy2
01 September 2015 21:04
Thanks Sally :) #weldns
@salsa442
01 September 2015 21:04
@helen_laverty Take care and speak soon ?? #WeLDNs
@fragilexuk
01 September 2015 21:04
@TurkJeremy2 For those interested, explanation of inheritance in our intro booklet #WeLDNs http://t.co/HDtvG2I6Ke
@ross_6479_RNLD
01 September 2015 21:04
@salsa442 @TurkJeremy2 could there be people living with FX that were never tested, only looking at tests as a result of children? #WeLDNs
@c_mcdonald3
01 September 2015 21:05
@TurkJeremy2 #WeLDNs our boys were 10 b4 diagnosis. Paed consultant didn't suggest it in early stages. Health professionals need awareness?
@fragilexuk
01 September 2015 21:05
RT @TurkJeremy2: Haven't come across volvulus. But hernias more common as well as joint dislocation because of loose ligaments. #weldns
@lousie198964
01 September 2015 21:05
RT @fragilexuk: @TurkJeremy2 For those interested, explanation of inheritance in our intro booklet #WeLDNs http://t.co/HDtvG2I6Ke
@lousie198964
01 September 2015 21:05
RT @TurkJeremy2: Haven't come across volvulus. But hernias more common as well as joint dislocation because of loose ligaments. #weldns
@dmarsden49
01 September 2015 21:05
@fragilexuk @salsa442 @ross_6479 its something that seems to be causing repeated admissions @ekhuft #weldns
@salsa442
01 September 2015 21:05
@tryingtobedad @TurkJeremy2 And the self research pointed towards fragile x? #WeLDNs
@ross_6479_RNLD
01 September 2015 21:06
RT @fragilexuk: @TurkJeremy2 For those interested, explanation of inheritance in our intro booklet #WeLDNs http://t.co/HDtvG2I6Ke
@salsa442
01 September 2015 21:06
Great question Ross #weldns https://t.co/a9p0vvVuvX
@TurkJeremy2
01 September 2015 21:06
Turk, J. (2011) Current Opinion in Psychiatry, Vol 24, 387-397. #weldns
@fragilexuk
01 September 2015 21:06
@ross_6479 @salsa442 @TurkJeremy2 Would expect so, yes. We do get enquiries about adults requesting testing, still #WeLDNs
@WeLDnurses
01 September 2015 21:06
#ebp #weldns https://t.co/lvvr7MEQqw
@salsa442
01 September 2015 21:06
Thanks for sharing #WeLDNs #EBP https://t.co/v4Tg5B9r0t
@fragilexuk
01 September 2015 21:07
@ross_6479 @salsa442 @TurkJeremy2 diagnosis important both for the individual & their wider family (who may have FX or be carriers) #WeLDNs
@fragilexuk
01 September 2015 21:07
RT @c_mcdonald3: @TurkJeremy2 #WeLDNs our boys were 10 b4 diagnosis. Paed consultant didn't suggest it in early stages. Health professional…
@dmarsden49
01 September 2015 21:07
RT @c_mcdonald3: @TurkJeremy2 #WeLDNs our boys were 10 b4 diagnosis. Paed consultant didn't suggest it in early stages. Health professional…
@salsa442
01 September 2015 21:07
@tryingtobedad @TurkJeremy2 Which would come from the loose ligaments... #WeLDNs
@TurkJeremy2
01 September 2015 21:07
Ross, Craig, both so right. Possibility missed even by experienced clinicians! #weldns
@salsa442
01 September 2015 21:07
Great perspective from a parent carer #WeLDNs https://t.co/lW79SU90vO
@fragilexuk
01 September 2015 21:07
What things have worked well/not so well for when supporting someone w FX in healthcare? #WeLDNs
@salsa442
01 September 2015 21:08
RT @fragilexuk: What things have worked well/not so well for when supporting someone w FX in healthcare? #WeLDNs
@fragilexuk
01 September 2015 21:08
Is there a resource which we could create which would be useful for LD nurses about FX? Key Info? Format? #WeLDNs
@dmarsden49
01 September 2015 21:08
@fragilexuk @salsa442 @ross_6479 @EKHUFT Although, I couldn't link this to any particular syndrome at this stage #weldns
@lousie198964
01 September 2015 21:08
RT @fragilexuk: What things have worked well/not so well for when supporting someone w FX in healthcare? #WeLDNs
@lousie198964
01 September 2015 21:08
RT @fragilexuk: Is there a resource which we could create which would be useful for LD nurses about FX? Key Info? Format? #WeLDNs
@salsa442
01 September 2015 21:08
@fragilexuk In acute hospitals,needed specific individual reasonable adjustments to facilitate care #WeLDNs
@WeLDnurses
01 September 2015 21:09
RT @fragilexuk: What things have worked well/not so well for when supporting someone w FX in healthcare? #WeLDNs
@ross_6479_RNLD
01 September 2015 21:09
@fragilexuk @salsa442 @TurkJeremy2 absolutely, important that support is given with diagnosis for all involved #WeLDNs
@WeLDnurses
01 September 2015 21:09
RT @fragilexuk: Is there a resource which we could create which would be useful for LD nurses about FX? Key Info? Format? #WeLDNs
@salsa442
01 September 2015 21:09
@tryingtobedad @TurkJeremy2 Too much random info isn't helpful,but respect to you for not giving up and getting the right outcome #WeLDNs
@dmarsden49
01 September 2015 21:09
RT @salsa442: @fragilexuk In acute hospitals,needed specific individual reasonable adjustments to facilitate care #WeLDNs
@WeLDnurses
01 September 2015 21:10
RT @salsa442: @fragilexuk In acute hospitals,needed specific individual reasonable adjustments to facilitate care #WeLDNs
@c_mcdonald3
01 September 2015 21:10
@fragilexuk I agree, but also think creating the leaflet is 1 thing, getting it out there is another!#WeLDNs
@TurkJeremy2
01 September 2015 21:10
Lo stim environment vital - sadly opposite of many acute medical & surgical wards #weldns
@salsa442
01 September 2015 21:10
I'd agree with this, it all starts with education #fragilexawareness #WeLDNs https://t.co/nkGUiwikLx
@WeLDnurses
01 September 2015 21:11
@c_mcdonald3 @fragilexuk How could this be done Craig? #weldns
@salsa442
01 September 2015 21:11
@TurkJeremy2 And very difficult to achieve in acute practice even in side rooms #WeLDNs
@MariaPanza247
01 September 2015 21:11
I would love some recommendations on meds. Sertraline, Abilify and minocyline were prescribed by Dr H for my daughter FX ASD #weldns
@fragilexuk
01 September 2015 21:11
@TurkJeremy2 Absolutely, sensory issues (lights, smells, sounds etc) can make environments overwhelming #WeLDNs
@fragilexuk
01 September 2015 21:12
@TurkJeremy2 reducing time having to wait in e.g. busy/ noisy waiting rooms can be a simple help #WeLDNs
@ross_6479_RNLD
01 September 2015 21:12
@salsa442 @tryingtobedad @TurkJeremy2 interesting, there is so much cross over and with autism being a spectrum so many variables #weldns
@dmarsden49
01 September 2015 21:12
@WeLDnurses @c_mcdonald3 @fragilexuk what about a series of infographics/posters? #WeLDNS
@sharonbourn4
01 September 2015 21:12
#WeLDNs we do need more docs specialists aware of fragile x syndrome
@MariaPanza247
01 September 2015 21:13
However, I feel it would be irresponsible of me to just give them to her without medical supervision. Can't find an Irish doc #weldns
@salsa442
01 September 2015 21:13
@fragilexuk @TurkJeremy2 We often had mobile numbers and phoned when consultant ready to see person #reasonableadjustment #WeLDNs
@TurkJeremy2
01 September 2015 21:13
@fragilexuk I think we need some road shows or similar? Making more work for myself again! But important. #weldns
@ross_6479_RNLD
01 September 2015 21:13
RT @salsa442: I'd agree with this, it all starts with education #fragilexawareness #WeLDNs https://t.co/nkGUiwikLx
@salsa442
01 September 2015 21:13
RT @dmarsden49: @WeLDnurses @c_mcdonald3 @fragilexuk what about a series of infographics/posters? #WeLDNS
@fragilexuk
01 September 2015 21:13
@WeLDnurses @c_mcdonald3 something we work on. In Scotland esp. our supprt&development worker does lots of proactive training #WeLDNs
@ross_6479_RNLD
01 September 2015 21:14
RT @fragilexuk: @TurkJeremy2 reducing time having to wait in e.g. busy/ noisy waiting rooms can be a simple help #WeLDNs
@ross_6479_RNLD
01 September 2015 21:14
RT @fragilexuk: @TurkJeremy2 Absolutely, sensory issues (lights, smells, sounds etc) can make environments overwhelming #WeLDNs
@c_mcdonald3
01 September 2015 21:14
@WeLDnurses @fragilexuk that's the $6m question I wish I knew the answer too. Small charity, limited resource need to grow network #WeLDNs
@salsa442
01 September 2015 21:14
@tryingtobedad @TurkJeremy2 But I'm sure there must be some pain there, just maybe unable to express it? #WeLDNs
@dmarsden49
01 September 2015 21:15
@MarziPanco How does this fit in with recent evidence of over use of meds for behaviour? https://t.co/Z3zrF6gcf1 #weldns #ebp
@fragilexuk
01 September 2015 21:15
@dmarsden49 @WeLDnurses @c_mcdonald3 Great idea. We did some around #autismawareness week- should expand. http://t.co/cpU0jtYK7V #WeLDNs
@TurkJeremy2
01 September 2015 21:15
Good point Ross. Fragile X syndrome = cause. Autism = one of many consequences. Hence entirely compatible - and often co-occur. #weldns
@fragilexuk
01 September 2015 21:15
@salsa442 @TurkJeremy2 love that idea! #WeLDNs
@fragilexuk
01 September 2015 21:15
@salsa442 @TurkJeremy2 Great reasonable adjustment. Waiting a real difficulty especially when anxious #WeLDNs
@TurkJeremy2
01 September 2015 21:16
I agree Sally. To often pain neglected as cause of challenging behaviours. #weldns
@salsa442
01 September 2015 21:16
Roadshows sound great! GP's have regular protected learning time you could #gatecrash on your tour! #WeLDNs https://t.co/TfXJlK1tML
@fragilexuk
01 September 2015 21:16
@ross_6479 @salsa442 @tryingtobedad @TurkJeremy2 often look v similar but important differences too http://t.co/cpU0jtYK7V #WeLDNs #ebp
@salsa442
01 September 2015 21:16
RT @dmarsden49: @MarziPanco How does this fit in with recent evidence of over use of meds for behaviour? https://t.co/Z3zrF6gcf1 #weldns #e…
@fragilexuk
01 September 2015 21:17
@salsa442 @tryingtobedad @TurkJeremy2 Due to loose joints hyperflexing may not be uncomfortable. #WeLDNs
@fragilexuk
01 September 2015 21:17
@salsa442 @tryingtobedad @TurkJeremy2 Also some suggestions increased pain threshold #WeLDNs
@dmarsden49
01 September 2015 21:17
RT @TurkJeremy2: I agree Sally. To often pain neglected as cause of challenging behaviours. #weldns
@salsa442
01 September 2015 21:17
@fragilexuk @TurkJeremy2 It's simple but extremely effective in my experience #WeLDNs
@ross_6479_RNLD
01 September 2015 21:18
@fragilexuk @salsa442 @tryingtobedad @TurkJeremy2 the key is to recognise the differences, which comes back to the education #weldns
@TurkJeremy2
01 September 2015 21:18
Re: fragile X & autism: http://t.co/hIA4NXZ0rA #weldns
@fragilexuk
01 September 2015 21:18
@TurkJeremy2 Absolutely though, always worth considering pain. Knowing more likely painful conditions in FX helps to spot #WeLDNs
@ross_6479_RNLD
01 September 2015 21:19
RT @fragilexuk: @salsa442 @tryingtobedad @TurkJeremy2 Also some suggestions increased pain threshold #WeLDNs
@ross_6479_RNLD
01 September 2015 21:19
RT @fragilexuk: @salsa442 @tryingtobedad @TurkJeremy2 Due to loose joints hyperflexing may not be uncomfortable. #WeLDNs
@fragilexuk
01 September 2015 21:19
@salsa442 Would love to engage GPs, first point of contact for so many families with concerns #WeLDNs
@salsa442
01 September 2015 21:19
@fragilexuk @tryingtobedad @TurkJeremy2 I'm sceptical about increased pain threshold,I think can b re expression of pain Vs anxiety #WeLDNs
@salsa442
01 September 2015 21:19
RT @fragilexuk: @salsa442 Would love to engage GPs, first point of contact for so many families with concerns #WeLDNs
@sharonbourn4
01 September 2015 21:20
@c_mcdonald3 @TurkJeremy2 #WeLDNs my eldest son was tested at 18 month for every thing bar fragile x
@c_mcdonald3
01 September 2015 21:20
@TurkJeremy2 @fragilexuk we were diagnosed with Fx but autism ruled out. Is that not correct? #weldns
@salsa442
01 September 2015 21:20
@fragilexuk maybe @WeDocs would be able to advise on how best to share information? #WeLDNs
@fragilexuk
01 September 2015 21:21
@salsa442 @WeDocs Really keen for your thoughts- keen to create resources targeted to what you would find most useful #WeLDNs
@ross_6479_RNLD
01 September 2015 21:21
@fragilexuk @salsa442 @tryingtobedad @TurkJeremy2 but could be diff. to differentiate between inc. pain threshold to not comm. pain? #weldns
@salsa442
01 September 2015 21:22
Interesting reading for later... #WeLDNs #EBP https://t.co/SXQ4lqLzKK
@WeLDnurses
01 September 2015 21:22
RT @sharonbourn4: @c_mcdonald3 @TurkJeremy2 #WeLDNs my eldest son was tested at 18 month for every thing bar fragile x
@sharonbourn4
01 September 2015 21:22
@salsa442 @helen_laverty @fragilexuk #WeLDNs that would certainly help as lots get ear infections quite bad as well
@TurkJeremy2
01 September 2015 21:23
Approx 4-6% of those with autism have fragile X. Approx 30% with fragile X diagnosable with autism. Rate much higher for spectrum #weldns
@salsa442
01 September 2015 21:23
@tryingtobedad @TurkJeremy2 That must be very hard for you as parents #WeLDNs
@fragilexuk
01 September 2015 21:23
@ross_6479 @salsa442 @tryingtobedad @TurkJeremy2 v. true. Always best to investigate health/pain as a priority esp w behavior change #WeLDNs
@TurkJeremy2
01 September 2015 21:24
ADHD v common as well #weldns
@fragilexuk
01 September 2015 21:24
RT @TurkJeremy2: ADHD v common as well #weldns
@fragilexuk
01 September 2015 21:24
@c_mcdonald3 @TurkJeremy2 Most individuals with fragile X don't have an autism diagnosis, though some show autistic like behaviours #WeLDNs
@WeLDnurses
01 September 2015 21:25
RT @TurkJeremy2: ADHD v common as well #weldns
@TurkJeremy2
01 September 2015 21:25
Re: meds question. IMHO minocycline unproven though a few families do swear by it #weldns
@fragilexuk
01 September 2015 21:25
@TurkJeremy2 absolutely- overactivity (esp in younger), difficulties focussing attention, impulsivity #WeLDNs
@junebrown116
01 September 2015 21:25
RT @salsa442: Thanks for sharing #WeLDNs #EBP https://t.co/v4Tg5B9r0t
@ross_6479_RNLD
01 September 2015 21:26
RT @TurkJeremy2: ADHD v common as well #weldns
@fragilexuk
01 September 2015 21:26
RT @TurkJeremy2: Re: meds question. IMHO minocycline unproven though a few families do swear by it #weldns
@lousie198964
01 September 2015 21:26
RT @fragilexuk: @TurkJeremy2 absolutely- overactivity (esp in younger), difficulties focussing attention, impulsivity #WeLDNs
@fragilexuk
01 September 2015 21:27
5 mins to go. Does anyone have any comments or questions? #WeLDNs
@ross_6479_RNLD
01 September 2015 21:27
RT @fragilexuk: @TurkJeremy2 absolutely- overactivity (esp in younger), difficulties focussing attention, impulsivity #WeLDNs
@ross_6479_RNLD
01 September 2015 21:27
RT @TurkJeremy2: Re: meds question. IMHO minocycline unproven though a few families do swear by it #weldns
@WeLDnurses
01 September 2015 21:27
RT @TurkJeremy2: Re: meds question. IMHO minocycline unproven though a few families do swear by it #weldns
@salsa442
01 September 2015 21:27
@TurkJeremy2 Who would prescribe this and how easy is it to get script to trial? #curious #WeLDNs
@lousie198964
01 September 2015 21:27
RT @TurkJeremy2: ADHD v common as well #weldns
@c_mcdonald3
01 September 2015 21:27
@fragilexuk @TurkJeremy2 that's the challenge isn't it? It's not autism, they might display some characteristics. Greater awareness #weldns
@salsa442
01 September 2015 21:27
RT @fragilexuk: 5 mins to go. Does anyone have any comments or questions? #WeLDNs
@TurkJeremy2
01 September 2015 21:27
Poor concentration, restlessness, fidgetiness, impulsiveness, distractibility - all treatable #weldns
@WeLDnurses
01 September 2015 21:28
#ebp #weldns https://t.co/TdM0TVtE1T
@salsa442
01 September 2015 21:28
@fragilexuk I've learnt a lot tonight,& have a lot of bedtime reading to do! Thanks for a super interesting chat #WeLDNs
@Besleybean
01 September 2015 21:28
RT @salsa442: Interesting reading for later... #WeLDNs #EBP https://t.co/SXQ4lqLzKK
@lousie198964
01 September 2015 21:28
RT @TurkJeremy2: Re: meds question. IMHO minocycline unproven though a few families do swear by it #weldns
@lousie198964
01 September 2015 21:28
RT @fragilexuk: 5 mins to go. Does anyone have any comments or questions? #WeLDNs
@TurkJeremy2
01 September 2015 21:28
Important psychological, educational & social treatments & supports firmly in place before meds considered. #weldns
@fragilexuk
01 September 2015 21:28
RT @salsa442: @fragilexuk I've learnt a lot tonight,& have a lot of bedtime reading to do! Thanks for a super interesting chat #WeLDNs
@lousie198964
01 September 2015 21:29
RT @salsa442: @fragilexuk I've learnt a lot tonight,& have a lot of bedtime reading to do! Thanks for a super interesting chat #WeLDNs
@fragilexuk
01 September 2015 21:29
@salsa442 thanks so much for all your fab contributions! #WeLDNs
@fragilexuk
01 September 2015 21:29
RT @WeLDnurses: #ebp #weldns https://t.co/TdM0TVtE1T
@TurkJeremy2
01 September 2015 21:29
I've really enjoyed taking part. Many thanks everybody. #weldns
@dmarsden49
01 September 2015 21:29
@fragilexuk I think I need to ask my colleagues in clinical coding whether we hold syndrome specific data #WeLDNs
@fragilexuk
01 September 2015 21:29
RT @TurkJeremy2: Important psychological, educational & social treatments & supports firmly in place before meds considered. #weldns
@salsa442
01 September 2015 21:29
RT @TurkJeremy2: I've really enjoyed taking part. Many thanks everybody. #weldns
@WeLDnurses
01 September 2015 21:29
RT @salsa442: @fragilexuk I've learnt a lot tonight,& have a lot of bedtime reading to do! Thanks for a super interesting chat #WeLDNs
@lousie198964
01 September 2015 21:29
RT @TurkJeremy2: Important psychological, educational & social treatments & supports firmly in place before meds considered. #weldns




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