“Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures”

Contact Details
PHONE: +44(0)1789 450564
FAX:+44(0)1789 450682
Email: info@stars.org.uk

Trudie founded the STARS organisation after her own daughter was diagnosed in 1993.  She is not medically trained but is recognised throughout the world as an expert on RAS.  Trudie is available to answer general enquiries and the more complex medical questions will be discussed with STARS MAC (Ask the Experts) of which she is a member.

The Frequently Asked Questions section of the website provides the answers to some of the more common questions asked of Trudie. Below are samples of the less common queries with her reply. Should you wish to submit your own question you can do so on line.  See below

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Question
My daughter is now a teenager with RAS. I can no longer follow her everywhere and wrap her in cotton wool. How can she be identified to others as a sufferer? If she is in an accident and has a seizure, someone sees her jerking or sees her loose consciousness. What will they think is wrong? I know she needs no treatment for the seizure, but no one else does! What if she has fallen during a seizure and knocked herself out? I know what caused her to fall, but no one else does! How can I ease my worries and at the same time protect her being given unnecessary treatment?
P.S It doesn't help that she is extremely extrovert and hasn't a fear in the world!!

Answer
It is recommended that people with syncopes and reflex anoxic seizures should wear a MedicAlert bracelet (application forms available from STARS upon request). The MedicAlert emblem bears the Internationally recognised medical symbol and is engraved with your medical condition, personal identification number and MedicAlert's 24 hour emergency number. By telephoning this number, emergency service personnel across the globe can immediately gain access to vital medical and personal information in over 100 languages, which will assist in proper emergency treatment and understanding of the condition.
This has helped so many families overcome their fear of letting their child 'out of their sight' in the knowledge that should an attack occur a simple 'phone call will inform everyone of the procedure to follow.

Question
Since the removal of my son's pacemaker last December, we have experienced a few instances whereby I have thought he would lapse into a full blown seizure. However, my husband has reacted very quickly when seeing his breathing stop and pulling him into his arms and talking to him etc, is it possible for a seizure to be diverted in this manner.

Answer
Re 'near-miss' yes this is very common and is acted upon quickly enough the child can be 'distracted' or even shocked into reversing the attack. Even shouting his name and making him jump can abort the attack. As they mature so the attacks become less frequent but often 'near-misses' increase until eventually both stop or become less frequent. Many have reported how they can divert an attack - sometimes it works sometimes not - noone knows for sure how what or when! But if it works GREAT!

Question
I'd like to ask if you have any information regarding people reporting trouble with local anesthesia. I experienced a syncopal episode during a biopsy after administration of Lidocaine, and was wondering if it was in some way triggered by the anesthesia. Thanks very much for any information you can provide.

Answer
Induction of anaesthesia especially by endotracheal incubation causes rapid increase in vagal discharges. It is common to find a precipitating cause for Syncopes and Reflex Anoxic Seizures, people with RAS are susceptible to them when anaesthesia is being induced. This is often prevented by pre-medication with Atropine. The anaesthetist (doctor who carries out the anaesthetic) should be informed in simple terms that the patient has syncope or RAS and that their heart can stop due to increase in the vagal tone for up to one minute.
An information leaflet is available from STARS for anaesthetists and dentists etc.

Question
In the US, when diagnosed with NCS, the doctors recommend dietary changes such as high fluid and high salt, and in some cases, compression garments such as hose or abdominal binders. Is this also recommended in the UK, and if not, do you know why not.

Answer
In the UK added salt & adequate daily fluid is recommended but NOT high doses. The physical aids are discussed, but are never popular, even corsets as abdominal binders are not received well by the older generation!

Question

Could you tell me if other people with children with RAS have said their child is extremely sensitive and anxious?   My daughter is driving me mad at the moment; she's so clingy and tearful - admittedly she has a bad cold, and always only wants me. She hardly ever lets her Dad do anything for her. I'm finding it really difficult and she's not even having attacks right now.   If she knocks herself slightly, she screams in pain for ages after.   It's the slightest thing. It’s almost like she has no pain threshold at all. Sometimes I think her body hurts in different places, but she's only two and a half, so she struggles to explain. I just wondered if this is all associated with RAS?   I know a little may be, as I've read it on the STARS website.

Answer

Absolutely - this is exactly what an RAS child is like.  They are super-sensitive!   It can be very draining for Mums in particular, because you are the one with her the most. She feels safe, secure and relaxed with you - it is a compliment to you, but I know how draining it can be.

Lots of reassurance and encouragement is needed to help her self-esteem and self-confidence.

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