Monday, April 7, 2008

Dealing with Sickle Cell Without Using Drugs

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.
  1. There are non-pharmaceutical options like Pro-Arginine.
  2. 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.
  3. Stress relieving activities like pilates and yoga, as well as a regular exercise regimen.
  4. 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.
  5. 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.

4 comments:

mizzmercedes said...

HI,

I read the question that a reader had about the Droxy. I am no NYS medical professional but am a professional when it comes to my child. I see that some of the suggestions speak about Thyiocynate. I have been through that issue in which the NIH Medical Professional are strongly opposed to it. My research on this came about becasue there was a PhD (forgot his name) selling "dioscovite" as the magical crisis stopper. Naturally, I did my research, I was not giving my child this without knowing what the hell was in it. I contacted the NIH and became good friends with Dr. Duana Bonds and approached this issue.I was told that In trials, thyiocynate was discontinued before third round of trials due to the danger it presented when taken. My daughter is on droxy and has been crisis free for a year. As you said,"IT DOES NOT WORK FOR EVERYONE" and the doctors will give this information when prescribing. As far as the monthly transfusions, i was faced with that dilemma and I chose droxy. The bone marrow transplant..I find that they want you on your last leg before giving the ok (at least in my area). It takes alot of money and the cure is not promised after receiving this due to risk of rejection and graft vs host disease. I hope all works out for you. the l-arg..i was on to that..but the droxy is working so well.

Anonymous said...

Hey Warrior,
I talked to you about toughing it out in medical school but I never mentioned one of my greatest secrets. HAve you tried "Pedialyte" yet? I mean its semi expensive ($6 for the brand, I've never tried the knock offs) but it really is great for revitalizing you. Its just pure electrolytes. I mainly use it as a hang-over cure but originally used it to prevent crisises. Its great to bring on long trips so you stay strong on the plane. Still waiting for your email ::akinyos2@eden.rutgers.edu:: please title it SickleCell something haha.

N Brown said...

Have you ever heard about DIOSCOVITE? It is a liquid dietary supplement with only three ingredients; Potassium Thiocyanate (aka yam vitamin), Kelp Herb Iodine and Pure Water...

Just put a small amt, depending on age in your juice, water, daily and it works wonders...

For more information read up on Dioscovite online at dioscovite1.com and email me directly at nbwavs@gmail.com

Michael Adedoyin said...

Everyone I know using Dioscovite had no issues. In fact, the reverse is the case. It has helped so many people and none has mentioned any complications(meaning it is safe, not that some people can't react. People have died from reactions to common antibiotics so that's not new.)