This document discusses several life-long conditions in children: Carrie has epilepsy, Hannah has cystic fibrosis, Nimmy has sickle cell anemia, Sophie has Crohn's disease, and Sarah has diabetes. It provides information about each condition, including common symptoms, treatment options, and personal stories of children living with the conditions.

1. Life-Long Conditions
Carrie - Epilepsy
Hannah – Cystic Fibrosis
Nimmy – Sickle Cell Anaemia
Sophie – Crohn’s Disease
Sarah - Diabetes

2. Epilepsy
• No uniform definition of Epilepsy but is used to describe a range of
a condition by recurrent, unprovoked seizures
• Is a neurological condition which affects the brain and nervous
system
• Electrical signals in the brain control the body’s function and if
these signals are disrupted it can lead to an epileptic seizures
• Epilepsy can be caused by damage to the brain or a child’s genetic
make-up

3. Types of Seizures
• The two main types are;
• Partial (Focal) – where only one side of the
brain is affected
• Generalised – where both sides of the brain
are affected

4. Treatment
• Balanced diet,
• Sleep
• Low levels of stress or anxiety
• Medication
– first line of treatment AED – lots to chose from
• Sodium Valproate - generalised seizures
• Carbamazepine - partial seizures

5. Treat the child not the illness
It is important when treating a child with
epilepsy, to try and gain an insight into how the
illness affects them individually rather than
textbook treatment (The Epilepsy Society 2011)

6. Christopher’s Story

7. Living with Cystic Fibrosis

13. Sickle Cell Anaemia
Sickle cell anaemia is inherited by
a recessive gene, which makes
red blood cells form into an
unusual crescent
shape, compared the normal
concave shape most red blood
cells have

14. Normal cell Vs Sickle cell

15. Who can get SCA?
• Much more common in people of African and
Mediterranean descent
• Also seen in people from South and Central
America, the Caribbean, and the Middle East
• Genetic counselling is available to known
carriers

16. Chances of being affected

17. Sickle Cell Crisis
• Many types but more common is
vaso-occlusive crisis
• When the sickle cells become blocked within
the person’s body causing pain
• No real explanation as to why this happens

18. Pain Relief
• PCA
• NSAIDs - diclofenac or naproxen

19. Treatment
• A bone marrow transplant
• Penicillin to help lower the risk of infection
• 1 mg dose of folic acid daily for life
• Blood transfusions
• Hydroxyurea – but lots of side effects

20. Pamela’s Story

21. Crohn’s Disease

22. • Condition which causes inflammation of parts
of the gut leading to :
– diarrhoea
– abdominal pain
– tiredness

23. Treatment
• Strong medication
• Operation
– part of the intestine removed,
– Leaving a colostomy- an opening from the large
bowel, to allow faeces to leave your body without
passing through the anus
– Stoma bag

24. Michael- Good Days
• Strict diet
• School
• Supplements and
minerals
• Job
• Hospital weekly
• Empty stoma bag x 3
• Socialising
times every day

25. Michael – bad days
• Severe pain – weeks on end
• Lack of sleep
• No school
• No job
• No socialising
• Frequent toilet visits
• House-bound

26. Type 1 Diabetes
• 25,000 people under age of 25 in UK
• Serious life-threatening condition
• Incidence increasing especially in under 5s
• Occurs because of a lack of insulin
• Leads to high blood glucose levels
(hyperglycaemia)
• The Science Bit!

27. Julie’s Story
• How she found out she had it
• Normal life
• When things go wrong

28. Questions
1. What are the 2 main types of seizure?
2. What is a colostomy?
3. What is the difference between hypoglycaemia and
hyperglycaemia?
4. Children with sickle cell anemia can stay well without
being in hospital by taking penicillin every day to help
risk of infection - can you think of any other way sickle
cell patients can help themselves?
5. If a child came onto the ward with symptoms of tissue
hypoxia what would be the nursing interventions?

29. Answers
1. Partial & generalised
2. An opening from the large bowel to allow
faeces to leave the body without passing
through the anus
3. Hypo = low
hyper = high

30. 4. • 5.
• Give oxygen – high • Eating a healthy diet –
concentration on oxygen high calorie and high
within alveoli increases protein
diffusion of gas across • Immunizations all up to
membranes date
• Avoid letting the child • Isolate child from
physically out do infection that is known
themselves – less oxygen
need when not exercising • Getting enough sleep
• Make sure their not • Controlling body
under any emotion stress temperature (not being
too hot or too cold)
• Possible blood transfusion
– increased amount of • Folic acid – helps the
RBCs, which carry oxygen body form RBCs
to tissue cells, transfusion
promotes circulation

31. Many thanks

32. References – Epilepsy
• Marson, Williamson and Hutton 2003
• Glasper and Richardson 2010
• Panayiotopolous 2005

33. References – Diabetes
• http://www.youtube.com/watch?v=_OOWhuC_9Lw - Accessed 23.11.11
• http://www.internurse.com/cgi-
bin/go.pl/library/article.cgi?uid=40590;article=BJHA_3_3_121_124
Caring for a child with diabetes Accessed 13.11.11
• http://www.nice.org.uk/nicemedia/pdf/CG015NICEguideline.pdf
NICE article accessed 14.11.11

34. Reference - CF