“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

1. What is Reflex Anoxic Seizures?
Reflex Anoxic Seizures occurs mainly in young children but can occur in adolescents or adults. The sudden shock of pain (however slight), or indeed any unexpected stimuli, causes the heart to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen with arms and legs jerking. After 30 seconds or so the body relaxes and the heart restarts. The sufferer may remain unconscious for one or two minutes or for well over an hour. The sufferer often sleeps for 3-4 hours after an attack.
RAS is often mis-diagnosed as simple breath-holding or more seriously as epilepsy.

2. What is the age of the youngest and oldest known RAS sufferer?
The youngest known sufferer had his first attack during his first day of life. There are RAS sufferers in their 50s and 60s.

3. What causes RAS in children?
Reflex Anoxic Seizures are caused by the vagus nerve being over stimulated due to an unexpected stimulus such as pain/shock/fear. It is not known why this should happen in some children.

4. Does the person's heart stop during a 'near miss'? {We understand near-miss to refer to an incident when the person stops breathing after a fright or other stimuli, but starts to breathe again before consciousness lost?
The heart tends to slow down briefly rather than stop during a near-miss.

5. Will the heart weaken through time?
No, an RAS attack puts no strain at all on the heart.

6. Placing the child into the recovery position immediately after the fright or other stimuli and before loss of consciousness seems to lessen the severity of the attack, or result in a near miss. Is there any medical foundation for this?
This does seem to be the case, although the doctors are unsure why. It should be noted that the person does not always have to be placed in the recovery position. (Possibly it reduces the effect of the drop in blood pressure which occurs after the heart stops.)

7. Does an RAS attack cause any damage to the brain, short term/long term?
There is no evidence whatsoever that RAS causes brain damage. The 'fail safe' mechanism in the brain restarts the heartbeat and breathing before the oxygen level is low enough to cause damage.

8. If the cessation of the heart beat and breathing continues beyond the child's normal reaction time at what point should resuscitation be attempted, and how should this be administered?
It would be extremely unlikely that resuscitation would be needed, because of the 'fail safe' mechanism in [7] above. However, if the person's heart and breathing has not restarted after a period of two minutes, then, attempting resuscitation in the normal manner would do no harm.

9. When do children grow out of attacks and what percentages of children continue attacks after school entry age?
Children's attacks tend to lessen as they get older, but they may never 'grow out' of them fully. Unpublished data shows that 75% of children 'grow out' of RAS at around school age; however 1: 4 continue to have attacks albeit less frequently and less severe

10. Do you know of any adults with RAS?
Yes

11. Is there a support group for them?
Yes. Syncope Trust and Reflex Anoxic Seizures (STARS) is open to all ages.

12. When a child becomes too old to attend the children's hospital, which hospital do they attend and will they know about RAS?
The patient would be referred onto the nearest 'adult' hospital should it be necessary and all information forwarded. An individual hand over plan would need to be made, sometimes to a cardiologist, sometimes to the GP; it depends on the individual case.

13. Why do some children regain consciousness after an attack quicker than others do?
Children are very different in their ability to recover from attacks, partly because of the severity of the attacks, and partially due to their own body's reaction to the attack.

14. Can an RAS attack occur while the child is sleeping?
Probably not, however there are other heart stopping conditions, notably Prolonged QT Syndrome, which do occur during sleep, and while awake especially with exercise. Prolonged QT Syndrome can be diagnosed using an electrocardiogram (ECG), and parents are encouraged to have this done, to rule out this diagnosis.

15. Why does an RAS child have more attacks when with parents?
There are two theories, one that the child has most attacks as a toddler, when he would normally spend most of his day at home with a parent. Another theory is that the child feels more relaxed in his home environment, he is not anticipating a fright, and will therefore be more likely to have an RAS attack because the fright/bump was unexpected.

16. What are the problems facing an RAS child during anaesthesia?
The vagus nerve can be stimulated to produce an RAS attack by pressing the eyeballs [the ocular compression test] and, in anaesthesia when the tube is pushed down the throat. If the person is anaesthetised lying flat, after being given a pre-operation dose of atropine, there will be no further complications.
Complications arise where, particularly in dental anaesthesia, the RAS sufferer is anaesthetised sitting up. The intubation causes the RAS attack, and because the body is upright the blood falls to the legs. When the fail-safe mechanism restarts the heart the lack of blood in the heart could cause a cardiac arrest. Complications, including brain damage could then ensue.
The advice is always tell the anaesthetist that the child or adult has, or did suffer from RAS, and insist that all anaesthesia is administered while the patient is lying flat.

17. What does the RAS child feel and experience during the stages of an attack?
A few older children have been able to describe what they experience during an attack and mention that voices sound far away, but that it felt nice. They do say that it is not pleasant coming out of an attack back to consciousness.

18. Is there a genetic factor in RAS?
Almost certainly. More research is needed to establish what gene actually carries the susceptibility to RAS. A team at Birmingham Children's Hospital is hoping to do research to identify the gene responsible for RAS.

19. Will my son pass RAS onto his children?
It is quite possible. It is now known that RAS and fainting episodes like RAS can run in families.

20. Could the person with RAS carry a card like people with epilepsy or diabetes, with "RAS" on one side and instructions for first aid response on the other?
Medic Alert pendants or wrist tags are appropriate for the person with RAS. Application leaflets, which must be countersigned by your doctor, are available from the RAS support group. Please send an SAE with your request, a small donation to cover administration costs would be appreciated.

21. Is there a link between RAS and other medical conditions, e.g. Early childhood illness, heart murmurs or developmental delays?
As far as the medical experts know, the answer is no.

22. What can I say to a child to comfort them during an attack?
It does seem to help to talk to your child calmly and reassuringly during an attack as it would appear that they are aware of at least the sound of voices.

23. What problems are associated with vaccinations [in respect of both the actual injection and the immunisation mechanism]?
None, other than it is possible to bring on an attack with the fright of an injection. Try to talk to your child and alert them so that they anticipate the pain. On balance, it is in the child's interest to have the immunisation rather than the risk of contracting the disease.

24. Has an RAS child had an attack in a swimming pool? If so, what happened?
Yes - fortunately the parent noticed immediately so no harm occurred. The stimulus of cold water splashing in the face, is a particularly strong stimulus to the vagus nerve, and can result in an attack. The child with RAS must learn to swim but should always have close parental supervision at all times in the pool.

25. What problems are associated with dental surgery?
The problems with dental surgery lie in the method of induction of anaesthesia [see 16] There is an information leaflet available for dentists from the RAS support group, send SAE with your request. A small donation to cover administration costs would be appreciated.

26. Why does a child with RAS cry for hours after an attack?
Doctors are unsure. It could be due to chemical imbalance in the body after a period of anoxia, or might be due to the child's experience as they come out of the unconscious state. Perhaps the child's subconscious is coping with the emotion and shock of the seizure.

27. Are pains in the legs common amongst people with RAS?
Yes, however many children suffer with pains in their legs even if they do not have RAS. Again it is hoped that proposed research may identify whether people with RAS are more susceptible to pains in their legs.

28. Is there a connection between a complicated birth and the development of RAS?
No

29. What information should be given to playgroups and schools to ensure that staff know the risks?
There is an information sheet for schools/playgroups, available from the RAS support group as well as a video to show teachers an actual attack. Information leaflets are also available for teachers and for children with RAS starting secondary school. Please send SAE if you require the information sheets. A small donation to cover administration costs would be appreciated. Very few children have RAS attacks at school.

30. What is the longest time an RAS sufferer has been free from attacks before they experience attacks again?
10 years

31. Can an RAS attack be controlled, once the child has experienced fright/other stimulus?
The child has no control over the process. Some parents find, in the early stages they can avert the attack, by a combination of reassuring the child, talking and placing them down in the recovery position. Different children respond differently. (In older children biofeedback techniques might be useful.)

32. Any advice on how to cope day to day with family life and a child with RAS?
It is important for the child with RAS to lead a normal healthy life, however, adults in charge of the child at any given time, should be aware of the child's condition. Contact the RAS Support Group for further information and advice.

33. A parent has been advised not to cuddle a child during an attack and let them come round themselves. Is this good advice?
The best advice is to have the child lying in the recovery position (lying on their side), speaking calmly and reassuringly to them, with physical contact where appropriate [rubbing child's back, patting their arm]. Your voice should sound calm and reassuring.

34. Why does a child's face in an RAS attack go white and not blue?
During an RAS attack the heart stops beating, and breathing stops. Blood vessels constrict and the blood is not able to get to the skin. This results in white pallor to the face. The blood is lacking in oxygen and will be blue coloured; only noticeable on the lips in the early stages of the attack.
During a blue breath-holding attack lack of oxygen from the lungs causes blood to turn blue. However, as the heart is still pumping, this 'blue' blood passes through the blood vessels of the face, causing the whole face and the skin of the body to have a blue tinge.

35. Why does an RAS child sleep for so long after an attack?
Unsure. It is probably the brain recovering from the shock of the attack. During a RAS attack the heart stops beating for normally 5 - 30 seconds, after about 9-10 seconds lack of blood supply to the brain makes the normal electrical activity in the cerebral cortex (the thinking, conscious part of the brain) turn off. When the heart starts beating again, the cerebral cortex comes on again but is sleepy for up to a couple of hours, as it gets over the 'shock'. This does NO damage to the brain.

36. What triggers are involved in later years?
Stimuli in later years often differ from the bumps and falls of a toddler with RAS. They can include trapping fingers, stubbing toes,sight of blood etc., long-term research is needed to discover what other stimuli causes these attacks.

37. Where is the vagus nerve, what is its normal function and what is its involvement in the RAS attack?
There is a full diagram and information sheet available from the RAS support group. Please send an SAE with your request. A small donation to cover administration costs would be appreciated.

38. Could the vagus nerve cause other symptoms, feeling faint, sick, or affect the blood pressure?
The vagus nerve has many functions within the body. An information sheet is available {see 35}.

39. What makes the heart restart after an attack?
As the oxygen level decreases in the brain, there is a chemical release [the fail-safe mechanism], which induces the heartbeat and breathing mechanisms to restart.

40. How does an epileptic attack differ from an RAS attack?
An EEG (brain wave activity) of an epileptic attack would show excessive elective spike or epileptic discharges, which are not present in an RAS attack. In an RAS attack the EEG goes slow for a few seconds then is flat as the cerebral cortex shuts down, then goes slow again during the drowsy recovery phase before returning to normal. An RAS attack is always precipitated by a shock trigger, albeit sometimes difficult to identify.

41. How does Atropine prevent seizures, when should it be prescribed, and what are the side effects?
There is a full information sheet available from the RAS support group. Please send a SAE with your request. A small donation to cover administration costs would be appreciated.

42. What research is currently being carried out into RAS?
One of the aims of the group is to promote research. The recent research project of fitting pacemakers into children with RAS has been completed. A copy of the published paper is available from the support group. The group raised funds to purchase King of Hearts monitors. These monitors, worn by the person for a period of time, will provide essential information on the activity of the heart during a natural attack. We hope the information generated will be used for research.
43. What can be done to prevent a child having attacks?
Prescribe Atropine Sulphate Atropine Methonitrate or similar medication (Iron therapy might help in some children). Unfortunately these medicines do not always work. People with frequent and severe attacks in whom medical treatment has failed or is declined, could be fitted with a pacemaker.

44. How many children now have pacemakers?
Twelve children had pacemakers fitted under the research project at Yorkhill Children's Hospital.

45. When a child attends a 6-month pacemaker check what would happen if the pacemaker had not 'clicked in' at all, would it be removed?
No, not necessarily.

46. If the pacemaker was removed and then the attacks started up again would it be replaced?
Not necessarily, it would depend on the frequency and severity of the attacks and how it was affecting the individual. Pacemakers are used as a treatment, not a cure.

47. Now that the research is completed, will the findings be published and can we obtain it?
Yes, the pacemaker research project results are published and the RAS group will send a copy upon request.

48. Why does RAS affect such a small percentage of children?
We do not know.

49. Do children in other countries suffer with RAS?
Yes, and many are in contact with the RAS group. The new web page (www.stars.org.uk) has increased awareness and provided information for people with RAS around the world.

50. How many people are affected?
Unfortunately there is no data.

51. Is there a link between lack of iron in the blood and RAS?
Possibly. There is insufficient evidence currently, for the doctors to be certain of a link but iron therapy may help some children.

52. Is there a link between dietary allergies and RAS?
No.

53. Is there a form that can be presented to your GP to prove your child has been diagnosed as having RAS?
The consultant writes to the GP after the consultation and diagnosis, but the GP may need further information on the condition. There is an information leaflet for medical professionals available from the RAS support group. Please send an SAE with your request. A small donation to cover administration costs would be appreciated.

54. Are older children aware of situations that might result in an attack?
Yes, it would seem that they are aware of potential hazards and try to avoid them.

55. Are there any problems with insurance cover for RAS children?
Schools, playgroups etc., should be made aware of the child's condition, and should advise their insurance companies accordingly. Travel insurance companies should be informed of the person's condition and may require a doctor's letter to certify that the person is fit to travel. This should not increase your premium. Some private health insurance companies may refuse to cover any subsequent injury caused or related to a RAS attack.

56. Is there a pattern to the frequency of the attacks?
It does appear that they occur in batches, but we do not know why.

57. Is RAS more common in boys than girls?
Slightly more common in girls.

58. Is it possible that a child could have an RAS attack during its birth?
Yes, it is possible, but we do not know of any such incidents. The baby should come to no harm.

If you have further questions or would like any information leaflets, please send us an email

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