The Dreadful Sickle Cell Pain May Have Finally Arrived
When her son cries, a columnist fears it's the advent of crises — then responds
I’ve depended on optimism to protect my sanity, but I’ve always known I needed to be realistic.
Sickle cell disease affects people on a spectrum, and pain is always a feature no matter where someone lies on that spectrum. My son, a 2-year-old with sickle cell, and I have been lucky so far, but the pain, the part of sickle cell disease I’ve been dreading and wishing away, may have finally arrived, and I’m distraught!
I say “may” because I’m not 100% certain, but what else could explain his sudden crying outbursts? They’ve happened twice since we officially moved into autumn, and each episode lasted no longer than two minutes, but they’ve both been heartbreaking.
He cries. He won’t let anyone touch him. And while crying, he shouts “why” repeatedly. While he cries, I have to hold back my tears, and in my head, I ask myself why, too. Why him? Why this?
Oh, how that question brings back all the painful thoughts and emotions I went through in the early days. They haven’t gone away. I still go through them occasionally, but I do so now from a place of strength and wisdom.
Drawing on the strength, I’ve begun reassessing what I can do to optimize his care plan and stop the pain from happening frequently. I know the colder weather is a trigger, so besides my turning on the heating, he’s started wearing extra layers of clothing. He hates wearing socks, so I’m constantly chasing after him to keep them on. It’d be funny, but it’s not funny.
He’s usually very good at drinking plenty of water. We need to keep that up and ensure that his water is as warm as tolerable. I’ve also got to ensure that snacks like yogurt, which he’ll normally eat cool, get warm before he eats them. A lot of colds and other infections are going around now, so I’m making sure hands are kept clean and that he avoids ill people.
I’m still giving him a Mediterranean-style diet with plenty of fruits, vegetables, whole grains, nuts, yogurt, beans, and fish. I must admit that it’s been challenging recently to get him to eat certain foods, especially vegetables.
In early days he’d eat everything I offered, but nowadays, he picks at things and refuses others. I know it’s normal for his age, but it worries me because I know diet is essential for managing sickle cell. I’m trying everything from blending vegetables into stews to chopping them into fun shapes and playing airplane food games to get him to eat certain foods. It doesn’t always work, but we’re getting by.
The best I can do is my best, which I’ll continue to do.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.
With clinical trials for a "functional" cure to SCD in the final stages of FDA approval, I'm puzzled why these fantastic advances have been almost completely ignored by the media. I'm not the FDA or an affiliate, but certainly two companies have partnered to make a huge benefit to Sickle Cell afflicted patients...Vertex Pharmaceutical and CrispR Therapeutics. Where are the comments?