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Life-Long Conditions
        Carrie - Epilepsy
    Hannah – Cystic Fibrosis
  Nimmy – Sickle Cell Anaemia
    Sophie – Crohn’s Disease
       Sarah - Diabetes
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
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
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
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)
Christopher’s Story
Living with Cystic Fibrosis


• Claire

• NHS site
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
Normal cell Vs Sickle cell
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
Chances of being affected
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
Pain Relief
• PCA
• NSAIDs - diclofenac or naproxen
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
Pamela’s Story
Crohn’s Disease
• Condition which causes inflammation of parts
  of the gut leading to :
  – diarrhoea
  – abdominal pain
  – tiredness
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
Michael- Good Days
                     • Strict diet
• School
                     • Supplements and
                       minerals
• Job
                     • Hospital weekly
                     • Empty stoma bag x 3
• Socialising
                       times every day
Michael – bad days
•   Severe pain – weeks on end
•   Lack of sleep
•   No school
•   No job
•   No socialising
•   Frequent toilet visits
•   House-bound
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!
Julie’s Story
• How she found out she had it
• Normal life
• When things go wrong
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?
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
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
Many thanks
References – Epilepsy
• Marson, Williamson and Hutton 2003
• Glasper and Richardson 2010
• Panayiotopolous 2005
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
Reference - CF

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Life long illness

  • 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)
  • 7. Living with Cystic Fibrosis • Claire • NHS site
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  • 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
  • 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
  • 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