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Carers UK Forum • Catering angleman syndrome
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Catering angleman syndrome

Posted: Thu May 16, 2019 4:09 pm
by Gemma _1905
Hi we have got part of the results for our little girl and its saying she has angleman syndrome. I am looking for some help and support as i am a full time mum and a full time carer as it is all new to me and it is hard to see what we can do and get for help. Can anyone help me please

Re: Catering angleman syndrome

Posted: Thu May 16, 2019 4:15 pm
by Chris From The Gulag
Hi Gemma.

Angleman Syndrome ?

For the benefit of other readers :

Angelman syndrome (AS) is a genetic disorder that mainly affects the nervous system. Symptoms include a small head and a specific facial appearance, severe intellectual disability, developmental disability, speaking problems, balance and movement problems, seizures, and sleep problems.


One of the better references on the Internet ... ASSERT ( Angelman Syndrome Support Education & Research Trust ) :

https://www.angelmanuk.org/introduction ... is-assert/

Support.

We help support families and carers of people with Angelman Syndrome.

We also provide support to professionals who meet AS individuals, even though they may meet very few individuals
with Angelman Syndrome in their professional career.


An article on the Medicine Net web site will also be of assistance here :

https://www.medicinenet.com/angelman_sy ... rticle.htm

Others with more knowledge than mine will be along to extend their welcomes and ... hopefully ... provide guidance
and recommendations for practical support with daily issues.

Re: Catering angleman syndrome

Posted: Thu May 16, 2019 5:29 pm
by sunnydisposition

Re: Catering angleman syndrome

Posted: Thu May 16, 2019 6:27 pm
by Melly1
Hi Gemma,

Welcome to the forum. Did you have to wait long for the diagnosis? How old is your daughter?

She will most likely need input from a physiotherapist, occupational therapist and a speech and language therapist who can work with you to help her develop her mobility, self help and communication skills.

Depending on where you live and her age; how to access the support she needs will vary. Your health visitor, local child development centre, GP or her paediatrician should be able to refer her for services.

Melly1

Re: Catering angleman syndrome

Posted: Thu May 16, 2019 7:50 pm
by bowlingbun
Welcome to the forum. My son is now 40, he was brain damaged at birth.

There is an organisation called "Contact A family" which might be of help.
Contact Social Services to do a Needs Assessment for your daughter, and a Carers Assessment for you. (Make sure you get a written copy of each).
Investigate Disability Living Allowance, Care and Mobility.

Is your GP or paediatrician supportive?

Re: Catering angleman syndrome

Posted: Thu Jun 06, 2019 5:54 am
by Gemma _1905
We have just found out that our daughter hasnt got angleman syndrome but tgey are doing more tests to find out what is going on and we have to wait 3-4 months for the results and we really need to know the full diagnosis so we can work out what we need to do

Re: Catering angleman syndrome

Posted: Thu Jun 06, 2019 6:16 pm
by Melly1
HI Gemma,
regardless of diagnosis, it is possible to help her develop her communication, mobility/gross motor and make progress towards her developmental milestones. Push for advice and support to set up programmes to help her develop.

Melly1

Re: Catering angleman syndrome

Posted: Thu Jun 06, 2019 7:49 pm
by bowlingbun
Gemma, you do NOT need a diagnosis to get support. How old is your little girl now? Are you in touch with Education? Social Services?

Re: Catering angleman syndrome

Posted: Fri Jun 07, 2019 3:42 am
by Gemma _1905
Yes we are with the education and the ss yes we do need to know what is going on with our little girl as its not good so then we will be happy and we can work with it

Re: Catering angleman syndrome

Posted: Fri Jun 07, 2019 5:20 am
by bowlingbun
Good that your are getting help from SSD and Education. Sometimes a diagnosis takes a long time, but the needs are obvious.