* Your child has sickle cell disease – have you heard of this before? It is a genetic condition which causes red blood cells to change shape when there are low levels of oxygen.
* Children with sickle cell disease can experience very painful crises when red blood cells get stuck. This can cause painful swollen hands/feet, tummy pain, blood clots in the brain causing strokes. Boys can get persistent painful erections. They can also get chest pain, difficulties breathing and are more vulnerable to infections.
* If acute crisis: we will give your child some pain medication and oxygen and regularly monitor them.
* If stroke/acute chest/priapism: they may need exchange blood transfusions.
* To prevent acute crises: it is important your child takes daily penicillin antibiotics to prevent infections and that they get all their immunisations. There are some extra vaccines they should get including the annual flu vaccine and pneumococcal vaccine at 2 years repeated every 5 years.
* They must also take daily folic acid supplements. It is important you minimise exposure to cold weather, stress and prevent excessive exercise. It is important they stay well hydrated with enough fluid intake.
* Long term treatment will be managed by a paediatrician, specialist and the GP but it’s important that you and the school are also involved.
* We can teach you how to assess the size of your child’s spleen and to recognise unusual pallor.
* Specialists will review your child every 3-6 months.
* Regular blood transfusions to avoid stroke (treatment to stop iron building up)
* Hydroxycarbamide for recurrent painful crises.
* Only cure is a stem cell transplant under age 17.
* Psychological support
* Any concerns over school attendance or development, make an appointment with GP.
* Safety-net: seek urgent medical help if (fever, respiratory symptoms, signs of infection, unusual pallor, an enlarged/ing spleen, signs of stroke (weakness, tingling, or loss of speech), or painful crises and swollen hands/feet.