Sickle cell disease is near and dear to my heart because it affects my daughter, Mckenzie. During this month, the purpose is to focus the attention of people around the world on the need for treatment and continued research.
Sickle cell disease affects approximately 100,000 people in the United States.
To refresh your knowledge—sickle cell anemia is a disorder of the red blood cells. This is caused by an inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells.) The abnormal hemoglobin causes sickled red blood cells. The sickle-shaped cells can also stick to vessel walls, causing a blockage that slows or stops the flow of blood.
Every child is different so it is important to learn the signs and triggers that affect your little one. I wanted to share in home care that my family and I do to maintain Mckenzie’s overall health and minimizing the number and duration of crisis.
When Mckenzie is showing signs of a crisis, we immediately check her temperature and hydrate her. Pedialyte juice/ popsicles are great. Infant Tylenol or other fever reducers are also what we use to keep her fevers at correct temperatures. Extremely cold or hot temperatures can trigger a crisis. A fever of 101 or over could be a sign of a more serious complication. It’s vital that you contact your child’s pediatrician and/or hematology doctor.
A child with sickle-cell disease can experience a number of different things during a crisis. Like, showing discomfort (throbbing, sharp pain) throughout the body, swelling in hands and feet, high fever that won’t break, and fatigue. Pain-relieving medicine reduces these discomforts. Depending on the severity of the crisis, along with her daily medicine, we use anything from Tylenol to Ibuprofen. (prescribed specifically for Mckenzie from her pediatrician) Also, warm baths and rub downs relax Mckenzie.
This is for children all across the board. Make sure that anyone who comes in contact with your child is germ free! Teachers, caregivers, family members should be washing their hands several times per day. Get your little one in the routine of doing so as well. Children with sickle-cell disease are more prone to illness or something/someone contagious. Immunizations should be kept up to date.
Maintaining a healthy lifestyle
One of the key practices is introducing Mckenzie to healthy eating and activities. A balanced diet/fluids have been an ongoing process, at times Mckenzie has no appetite, which can be expected at times. When Mckenzie has no appetite we try to incorporate fruit and veggie smoothies. (Using our baby bullet) It’s so important to know your child (which can change from moment to moment) and do what works for them. Along with daily vitamins, children with sickle-cell should incorporate these foods in their diet: a lot of vegetables—green leafy vegetables especially, fresh and dried fruit, grains, calcium rich foods(yogurt), protein(lean meat/fish), orange juice, fruit juices with little to no added sugars, water, water and more water! Mckenzie has encouraged our family to change our diet as well. It has been great so far.
Be there emotionally
During a crisis, Mckenzie needs a little extra TLC. It’s important to just be there and be in her presence. Mckenzie just turned two, so she can’t fully explain to me what exactly is hurting her during a crisis. I do my best to determine her discomfort levels by asking her point to body parts where it hurts and often times just simply knowing something is different about her. One on one time with her(quiet cuddling, movies, stories) make all the difference.
Catch some Z’s
During and after a crisis, it takes a toll on a child with sickle-cell. Sleep helps with repairing and healing your heart, blood vessels and brain. It’s so important they are well rested for the body to regroup. A warm bubble bath and rub down will soothe your little one into a great sleep.