• Ethan Clement became a registered member 2 years, 7 months ago

    • Hi Ethan,

      I hope you’re well.
      I wanted to reach out and introduce myself. My name is Tito, I am one of the forum moderators of the site.
      I see from your profile that your child has sickle cell, please let me know how our forums can help you.

      Looking forward to talking to you soon!

      • Tito,

        I responded briefly earlier. What I’m very interested in is improving the quality of life for people with sickle cell disease. There are new drugs coming out on the market here in the USA, which are promising, but very expensive and without insurance would be impossible to purchase. Our son’s doctor has had trouble getting insurance to cover the costs.

        One question I keep asking myself is: What “home remedies” do other individuals (like yourself) use to try to help ease the constant pain? I’m talking about alternative medicine and nutritional approaches to dealing with the problem.
        If you have any input I would be very interested to hear it.

        Thanks

        Ethan

          • Ethan,
            I believe food high in protein is favorable, like beans and vegetables from the soil like potatoes, sweet potatoes, turnips and leafy green vegetables. Look up diets in Africa. SCD is not a “problem” their and their diet is different from the USA. Staying hydrated and relaxation are wonderful choices. Teenagers probably enjoy downtime also… Active recreational activity should be judged by the individual. Even a child knows when there is some risks. May I suggest making a list of the precursors to pain crises to avoid those times/behaviors. I have an appreciation for you as a parent for the efforts that you are making to comprehend your child’s health and to assist. God bless you!
              • Thank you for your input. He does like fresh spinach salad but not cooked spinach! It’s a learning experience. The right amount of physical activity/recreation is good. Too much is clearly bad but not entirely predictable especially as he Loves sports! Thankfully the warmer weather is arriving which also factors in. He is a blessing as tough as it is at times.
          • Ethan,
            Has your teenager’s hematologist discussed Apheresis with you and your wife regarding SCD? If not, ask about this… Hope the warmer weather brings relief.
              • I don’t think that has been discussed yet. Routine blood transfusions were started before covid but had to be put on hold because of increased risk. We haven’t resumed routine transfusions and he has been on a new medication Oxbryta which also may be helping his overall well-being.
                Ethan
                  • Ethan,
                    I understand. Some physicians are not familiar or do not have the facility capabilities for this option. I would be curious about the information that the physician shares with you when you ask and the rationale for their position. There are more options now for young people than earlier when I was growing up.

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