My daughter who is 12 years old (has SS)is thinking about taking Hydroxyurea instead of getting monthly blood transfusions. If Hydroxyurea is not right for sickle cell people what other thing can they take or do if they don’t want the blood monthly? Do you know?
First of all, know that I’m not a licensed medical professional. My views on Hydrea are just from my personal experiences and beliefs about it. It’s shown to be effective for some people just not all. Also, it only drops your incidence of having a crises by what…30-50%; which when added to the side effects is not enough for me.
Keep in mind that not everyone has side effects, and my hematologist recommends Hydrea strongly to all his clients with sickle cell. This is the only FDA approved drug that is presently used in the US to control sickle cell. There are other options though.
- There are non-pharmaceutical options like Pro-Arginine.
- Diet modifications like being vegetarian, avoiding overly processed and fried foods and bulking up on foods rich in thiocynate like carrots, beets and green leafy vegetables. I highly recommend buying and incorporating Back to Our Roots in your life.
- Stress relieving activities like pilates and yoga, as well as a regular exercise regimen.
- Hydrate, hydrate, hydrate! Drink as much water as possible. With sickle cell, you can never drink enough water. I have a friend that is 48 with sickle cell, has never been hospitalized a day in his life. His secret? Water. He drinks 2 gallons a day! So drink up.
- Rest. This is one of the points that I struggle with especially with my busy schedule. Try to get at least 6-8 hours a night. The most rejuvenating sleep is between 8pm and midnight. However, your body has to be in REM (which takes about 90 minutes from when you actually fall asleep). So try to go to bed early, sleep those hours and wake up feeling refreshed and rejuvenated. I’m a night own by nature and by my job so this is a hard one for me.
Those are the main precepts that I recommend for your daughter. I would also highly recommend doing some research into a bone marrow transplant. She might be able to be cured from this, so check with your docs if she’s a good candidate.
QUESTION , how do i drink 2 gallons of water without getting tired and blotted Please let me know , even when i drink it little by little , sip it every other hour or whatever time i get blotted almost going into crisis
Your comment..
how much water should a 1 year old sickle cell worrior take? Please advise on the best foods for little sickle cell worriors.