Sickle cell disease is a range of inherited red blood cell abnormalities that cause the cells to distort and break under stressful conditions. As a parent of a child or even a child suffering from anyone of these disorders, here are some helpful tips:
1. I’m sure everyone talks about hydration; plenty of water and juice. But let’s not forget to avoid dehydration too. They are similar but slightly different. You should avoid over exertion, exposure to hot environments and excessive salt diets. The goal is to take 1 to 2 litres of water daily and not lose nearly as much.
2. Learn what triggers pains and crises in your child and help avoid them as much as possible.
3. High altitudes would cause the cells to have low oxygen contents and can trigger a crises. So avoid high altitude activities.
4. Vaccinations are very helpful to prevent common illnesses as they can precipitate crises. Also early treatment of infections and other diseases can prevent crises.
5. Packed cell volume, iron studies, haemoglobin concentration are common indices that can be checked up in a nearby haematology clinic.
6. Using drugs everyday can be tiresome, but using your medication regularly helps reduce the risk of a crisis. Useful drugs include folic acid, hydroxyurea, prophylactic antimalarials.
7. Don’t overlook mild pains, it may be a sign to a looming crisis. Be generous in giving analgesia.
8. Don’t hide the condition from any potential care giver. It is important everyone, including the child and siblings, knows the condition, including the dos and don’ts
9. There are different types of crises with symptoms ranging from severe bone pain, chest pain and shortness of breath, (vaso-occlusive), abdominal swelling and pain (abdominal sequestration), severe jaundice (haemolytic), and severe anaemia with rapid heart rate and weakness(aplastic).
10. Don’t be overly restrictive but be watchful. Allow them flourish, grow, explore and be curious as any normal growing child. Let them live their fullest possible life.
Remember to seek specialist medical and psychological help where necessary for your ward. They will usually need it, don’t assume you have it all covered. Except you have felt it yourself, you can’t assume you know exactly how it feels.
And lest I forget, always care for yourself as well. Seek help and knowledge. Join support groups.
Written by Dr Oyinloye Gregory
Medical practitioner, SCD patient health practitioner, caregiver and parent.