The document describes the development of the PulseGuard heart rate monitoring system created by a family to help manage their son Tom's severe epilepsy condition. Tom was diagnosed with Dravet syndrome at age 15, which causes frequent seizures and risks sudden unexplained death in epilepsy (SUDEP). PulseGuard is a wireless heart rate monitor that alerts caregivers to changes in heart rate that could indicate an ongoing seizure or other medical issue, allowing for early intervention. It has helped provide peace of mind for Tom's family by detecting his seizure activity whether he is at home or in residential care.

1. Pinoeering Heart Rate Monitoring System
The Story Behind Our Development

2. On 7th December 1993
Tom was born,
a perfectly healthy
beautiful baby boy

3. Home from Hospital with proud big brother

4. Approx 5 weeks old

5. Loves sleeping

6. Approx 9 months

7. For 5 months he developed in the
same way as any other baby,
and then he had a massive seizure

8. His first seizure lasted for 40 minutes
and he was unconscious for 9 hours,
we thought we were going to lose him

9. After that Tom had regular
seizures every few weeks,
he was put on medication to try
and control his seizures and
Tom continued to develop the same as
every other child of his age

10. Tom loves animals

12. Christmas aged 3

13. Christmas aged 4

14. First day at school

15. Tom was doing well until he reached 5 1/2
when his medication stopped working.
For the next 2 years we went through a
nightmare while his consultant at Guys
Hospital tried to get his
epilepsy under control.

16. We discovered that Tom was, and still is
very sensitive to medication changes.
Each new medication would either not
work at all,
work for a short period of time and then stop
having any effect,
or would make his seizures worse.

17. We would regularly do emergency dashes up
to Guys Hospital after he had approximately
24 seizures in an evening

18. I would stay in hospital with him, usually for
several weeks at a time while they tried to stop
his seizures, my husband would come to the
hospital each day after work, and my two older
children would visit at weekends.
It was a dreadful time and very hard
on the whole family

19. Let out of Hospital to choose new Puppy

20. This pattern of events went on for the next
2 years until eventually Tom was under
reasonable control with a maximum of
7 seizures a night and taking 7 different
medications. Unfortunately by the time
he was ready to go back to school he had
developed learning difficulties and
behavioural problems

21. For the next 7 years Tom was happy at a
local special needs school
But when he turned 14 they could no longer
meet his challenging needs.

22. It was then suggested to us that it would
be in Tom’s best interests for him to
go to a residential school.

23. This was the hardest decision my husband
and I have ever had to make as we
didn’t want anyone else looking after
our little boy,
or have to trust anyone else
to look after him, but despite our fears we
researched and found a school
that specialises in severe epilepsy
called Young Epilepsy

25. With his 6th form tutor

26. Being a Pirate

27. Loves Music……..

28. ……….and scary rides

29. At 15 Tom was then diagnosed with Dravet
syndrome which is a genetic condition
that causes severe epilepsy

30. One in 40,000 children have this condition
There is (as yet) no cure, and no one really
knows what their life expectancy is.

31. Dravet Sufferers are at high risk of dying in
their sleep due to a condition called SUDEP
(sudden unexplained death in epilepsy)
which is why my husband and I researched
and developed Pulseguard

32. PulseGuard is a Pioneering New
Heart Rate Monitor
It has a Totally Wireless sensor
That transmits the patients heart rate Via
Bluetooth Technology to the PulseGuard app

34. It allows for early detection of any rise or fall
to the heart rate that triggers an alarm to
allow for early medical intervention
to be given
PulseGuard Can also alert to some types of
seizure activity whilst the patient is sleeping

37. PulseGuard Records data every time
the alarm triggers
This data can then be collected and shared
with your consultant to help with your
future treatment

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HR
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39. Tom will never be able to be independent as
we know it and will always need a high level
of medical care as he still has seizures
most nights

40. But with PulseGuard it has given us peace
of mind knowing that whether Tom
is at home with us
or in Residential care, PulseGuard will detect
and alert to his seizure activity and
more importantly if Tom’s Heart rate starts
to drop so that whoever is caring for him
at the time can safeguard Tom’s life

41. With Mum at Disney Land

42. Opening a lock gate with Dad & Sister

43. Impressing his Sister in Law

44. Dravet UK weekend at Center Parcs

45. Hitching a lift from his Brother in Law

46. Time to reflect

47. At his sisters wedding

48. Impressing the girls in Ibiza

49. Tom aged 20

50. Thank you for watching
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