Life-Long Conditions

Carrie - EpilepsyHannah – Cystic Fibrosis

Nimmy – Sickle Cell AnaemiaSophie – 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

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

• School

• Job

• Socialising

• Strict diet

• Supplements and minerals

• Hospital weekly

• Empty stoma bag x 3 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.• Give oxygen – high

concentration on oxygen within alveoli increases diffusion of gas across membranes

• Avoid letting the child physically out do themselves – less oxygen need when not exercising

• Make sure their not under any emotion stress

• Possible blood transfusion – increased amount of RBCs, which carry oxygen to tissue cells, transfusion promotes circulation

• 5.• Eating a healthy diet –

high calorie and high protein

• Immunizations all up to date

• Isolate child from infection that is known

• Getting enough sleep• Controlling body

temperature (not being too hot or too cold)

• Folic acid – helps the body form RBCs

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