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Thread: Three and half year old daughter with Sickle cell disease

  1. #1
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    Three and half year old daughter with Sickle cell disease

    Hi All,
    Am a new member to this wonderful site, am amazed with the information that is available.

    I have a daughter who is three years and six months old, who is a has Sickle cell disease. Last year she suffered a CVA(Stroke) which affected her lower limbs and upto now she is not able to walk. Most Doctors say the there is a high chance of it happening again if she not put on a blood transfusion program to suppress the production of sickle cell blood.

    What i would like to know is if there is alternative bloodless treatment, especially for this case. Her latest Hb count is 10.5 which am told should not go beyond that right now. She is on folic acid and Hydroxurea which she takes once daily. She also get an injection for benzathine once a month. Doctors have also recommended she goes for MRI again and go for a brain scan to check the velocity of blood in the affected area.

    Guys am a lay man in the medical field thats the much info i can give, i would appreciate a response from anyone with an idea of what we can do to help her.

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  3. #2
    Quote Originally Posted by cogallo View Post
    Hi All,
    Am a new member to this wonderful site, am amazed with the information that is available.

    I have a daughter who is three years and six months old, who is a has Sickle cell disease. Last year she suffered a CVA(Stroke) which affected her lower limbs and upto now she is not able to walk. Most Doctors say the there is a high chance of it happening again if she not put on a blood transfusion program to suppress the production of sickle cell blood.

    What i would like to know is if there is alternative bloodless treatment, especially for this case. Her latest Hb count is 10.5 which am told should not go beyond that right now. She is on folic acid and Hydroxurea which she takes once daily. She also get an injection for benzathine once a month. Doctors have also recommended she goes for MRI again and go for a brain scan to check the velocity of blood in the affected area.

    Guys am a lay man in the medical field thats the much info i can give, i would appreciate a response from anyone with an idea of what we can do to help her.
    Thank you for kind words about NoBlood. We are sorry to hear about the stroke. You are right to be concerned. While transfusions has been shown to reduce the risk of a second stroke, they have plenty of drawbacks.

    Probably the most important alternative would be cod liver oil. Not only does this thin the blood a bit, it can help clear up eczema, improve concentration, and strengthen the immune system. Assuming she is about 30-35 pounds, give her 1 1/2 tsp per day. Also, have her vitamin D level checked and keep it in the high normal range. The incidence of deficiency is sickle cell approaches 100%.

    Finally, keep her magnesium intake high. Magnesium dilates the blood vessels. The best dietary source is leafy greens. Epsom salt baths also are a good idea.
    Joseph T. Malak, MD

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    Joseph Malak,
    Thank you for your advice, it was quiet timely and an eye opener. One question though, is there a medical term for the Vitamin D tests, doctors here in Kenya cooperate more if one seems to know what they want and also for the sake of my understanding lab test and results.

    Once again Thanks for the advice.

    Collins

  5. #4
    Quote Originally Posted by cogallo View Post
    Joseph Malak,
    Thank you for your advice, it was quiet timely and an eye opener. One question though, is there a medical term for the Vitamin D tests, doctors here in Kenya cooperate more if one seems to know what they want and also for the sake of my understanding lab test and results.

    Once again Thanks for the advice.

    Collins
    Good question. You will want to ask for a 25-OH vitamin D level.
    Joseph T. Malak, MD

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    Joseph T. Malak,
    Thank very much.

    Rgds
    Collins


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    Drink plenty of water to help prevent crises, Water makes it easier for blood to flow in the vessels of the body. Adults with sickle-cell anemia should drink three to four quarts of water every day. Children, of will drink less. When she get's older and is in school she should carry water bottles.

    Avoid prolonged strenuous activity, and by eat a balanced diet reinforced by multivitamins and folic acid.


    As alternatives to blood transfusions, intravenous fluids, oxygen, antibiotics and other medications are often given to help minimize the complications experienced by sickle cell patients. Also, there are a number of medications being tested. For example, researchers have been experimenting with the use of inhaled nitric oxide for patients experiencing the complications of sickle cell disease. Nitric oxide is a colorless, odorless gas. It is sometimes used in respiratory therapy to open up or widen the blood vessels of the lungs and improve the flow of blood through the vessels. Although it does not cure sickle cell disease, this has helped some patients by reducing the frequency of painful crises and episodes of acute chest syndrome. There has been some concern about the possibility of this drug causing leukemia, but there is no definitive data that nitric oxide causes leukemia in sickle cell patients.

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    Thank You for the info.

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    Regular blood transfusions can also cause iron overload.

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    anonymous2009,
    Thanks for the info, however, I would like to know if you can recommend doctors in Kenya who are abreast with such information on glutathione. If any one know please pass me the contacts.

    I would also like to know the side effect of hydroxyurea, my daughter is on the drug, since she suffered CVA. That was one year ago. Is there tell tale sigh of the side effects or what tests can be done to check for side effects.

    Lastly i would like to know if they are any hospitals within Africa or India that offer Transcranial Doppler Ultrasound, we were told that its only available in Britain and the US. Its very difficult to get Visas to this countries unless you get support from the visiting hospital or Doctors which most institutions are not willing to commit. My daughter has to take that test soon, from what the doctors say she needs the test to has to know the cause of treatment to lessen the chance of the CVA happening again.

    regards

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