Avoiding and Identifying Sickle Cell Pain Crisis Triggers
Sickle cell disease advocate and care partner Carla Lewis shares things that have triggered pain crisis for her son and actions she took to help him avoid pain crisis over the years.
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In this program:
Sickle cell disease pain crisis can be brought on by different triggers. Sickle cell disease advocate and care partner Carla Lewis shares things that have triggered pain crisis for her son and actions she took to help him avoid pain crisis over the years.
Transcript
Interviewer:
Carla, how did you and your family avoid triggers, if any, so that you decrease the chance of your son experiencing one of these pain crises?
Carla Lewis:
So some of what we did is pretty much education to Shamar, we told him what triggers were, and that was from a little...I would ask some questions about pretty much what can make you have a crisis, are you not drinking enough water? And I would go over little things with them if you're out in the sun too much, so I made him aware of those things, so when he was at school or in someone else's care, that he can also say to them, I can't be here, and also having a conversation, of course, with his school. I went in and spoke to the school nurse, I went in and spoke to the teacher, and pretty much educated them about sickle cell. I provided the educational information to them, a sheet printed with triggers and what he should avoid, they made sure that during gym Shamar had his water, he took his water everywhere, he could not...because we live in Florida, it's hot. He could not stay outside with all the students if he felt not feeling well, or if it was just a sunny, bright day in Florida, his teacher knew that the Shamar could maybe go out for a little. But someone needed to escort him back in where he is in a shady area where he can be in air conditioning, that's how we kind of helped him manage, because Shamar was pretty much...
They would say asymptomatic he had a high fetal hemoglobin, which pretty much protected him from having...I could say more aggressive crisis. And his crisis pretty much was more like mild back pain like I mentioned, and those really weren't frequent for him. When he did...when the crisis got aggressive for him, pretty much sometimes it was just waking up in the morning. He didn't have to do nothing much, but because of just having sickle cell for him was very, just very, just intense for him to just wake up in the morning and just feel that that level of waking up went to a 8 and not talking about slowly progressing, I'm talking about waking up in excruciating pain, and pretty much we pretty much avoided the...swimming was another thing. He did have to learn swimming in school, because they do teach it here. But we made the teacher aware of what his limitations were, so he had come out dry off, he loves swimming, learned that skill like this. But even when we took him into the pool, I limited the time that he was in the water and then avoiding stress. And he's a very mild-mannered kid, so he's not argumentative with anyone, he's pretty much spoiled by his siblings. And so just pretty much being limited on stress also, and that means also with me, I had to be careful of my conversations with him or open in months of stressful situations where I know that the other children could do other...
The other children can do certain things as far as being in the water and playing... so, we all would do to do what Shamar needed to do this way, we all would take a break. So this way he doesn't feel any different, and I had to just be conscious of that because I didn't want him to really feel that this disease was impacted him to be less of a child, if you get more understanding that, and pretty much being very conscious of his mental health. Because that was important to me how he felt about that being the child with a chronic illness, he had medical appointments, he had comprehensive care, which was great, but those medical appointments were not like my other children. They can see the doctor once a year, Shamar had several appointments during the year. So what did that mean? And then when he was hospitalized, it was another layer of that on top. So I was very...it was very important for me to also talk about conversations of me being available for him and how me and his dad will kind of double that. But it got to a point that it did make a statement to me when I was just working and also working a facility and also managing the foundation, he made a point to me one day when he was hospitalized and I was like, “Oh okay, your dad has come in and we're switching shifts.” And he said, “Well, I need you.”
I need your hands to rub my back, and I realized that his needs started to be different as he got older, he didn't want to share some of...you want to be more macho for Dad. But when Mom is in the hospital, I can be relaxed, I can feel...I can feel okay, I can tell her to rub my back, but when Dad came back back rubbing, he didn't ask his dad that. That's what I realized. So just having a conversation and understanding his needs as well as understanding the limitations that may be her, but not saying it's a limitation, but being aware of the triggers that can maybe have him hospitalized. He also...I realized he had to understand what stress does. He had a test, I remember when he was in this health program for this, for the EKG program, and he knew the test was coming up, and he really was concentrated on studying that and studying it. And I kept saying, “Take breaks...you’ve got to rest, take breaks.” But he wanted to make sure I passed, so the stress really led him to go in the hospital at that moment, and when he got there, he said to them, well, I go, “I'm coming in here to get...to feel better.” And I want someone you get there, you're going to feel better, he's... I'm coming in to feel better, to me...should tell a doctor. Now, when you talk about teaching a child to be verbal and communicate with their doctor, he said to his doctor, “I'm coming here to get better, but I'm coming out today.” And I had to let them know, well, it takes time sometimes, and then he was...I said, “I want to take it step by step.” Right, so he was a little disappointed, but I told him that, “We may have to delay the test.” And that's what happened, we would delay. I said, “The test is not going away, you'll have another opportunity to take it at a different time.” Now understand his health is more... and that priority in prioritizing health is so much more important, so I just wanted to share those limitations and let them understand and communicate. And also has a good transition, I had to now have more conversations with him, and that was so different for me.
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