Viewing 15 posts - 1 through 15 (of 16 total)
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  • #17564
    Maryam Jawad
    Participant

    hello, 

    My son 4 yrs old is a sickle cell warrior he didn’t show any signs of scd until he turned three and need to be hospitalized for five days with antibiotics last May this year. His hematologist advised to think about starting the HYdroxyurea for him but inside of me I am not sure what to do , so here i am hoping to hear from u any advice that can help me. In the other hand he told us about this new treatment with gens for the scd and i am hoping that if u know more about please tell I will be more than happy for that .. Thank u

    #17565
    Richard Lazarus
    Participant

    Many years ago, my son, who was 19, was on folic acid. However when he relocated to the United States he was put on hydroxyurea. Soon after he developed a number of symptoms, swollen feed, then seizures.

    When he came visiting in Zambia, the haematologist diagnosed a complication where the antibodies were “fighting” against premature red/white blood cells.
    The drug was then very new and he felt as a duty to continue to help other patients.
    Sadly that took his life.
    I cannot say it was drug responsible it may have been other complications.

    #17575
    Kassem Banawer
    Participant

    I was treating with hydroxyurea more than 30 years ago this medicine is amazing but sure every chemical medication has side effect but by calculating the positivity of the medication with the side effect, I chose the medication because it can treat almost 90% of my SCD crises, so you have to know exactly what your son needs sure the doctor advice is taking in account.

    #17580
    Maryam Jawad
    Participant

    Very sorry for your loss and may his soul Rest In Peace. I would thank you for your reply and the information that you gave. Yes, for sure its got his good and bad even if its could make a-lot of complications, its may save someone life either. Hoping to reach for an answer.

    #17581
    viviane salzman
    Participant

    I have been on Hydrea for over 20 years now. The drug somewhat surely improves my quality of life. A friend of mine has been on it since she was a teenager, she is 48 now and she is well. I, however know patients who cannot tolerate the drug. So there’s no way to know who’s going to do well or not taking it. I would trust God and the doctor. Good luck to you. I will keep you in prayer and please keep us posted.

    #17582
    Maryam Jawad
    Participant

    Thank you brother and may god protect you always. Yes, we are currently observing how’s the health of his goes until his appointment with his hematologist appointment. They are suggesting the drug for him but I am still not sure that he need it the most that I will make him face the risk of having drug side effects as he have just start showing symptoms last year.

    #17583

    @maryjawad: So I was taking Hydroxyurea, 500mg, 1000mg and then 1500mg. My new hematologist decided to start red blood cell exchanges. The medication was discontinued. I understand that it is used mostly for individuals with SS disease. I did not experience side effects that I know of. The medication helps the body to make red blood cells, from what I understand. Hope this helps you to understand what the doctor wants for your SCD Warrior. There is a huge age difference.

    #17584
    Maryam Jawad
    Participant

    Yeah , the age issue for me is another thing to worry about. The doctor wants to start it not because of things happening now but to be prepared that things will not happen more in future so as a proflaxes. Thanks alot for these info, stay safe

    #17587
    Tito Oye
    Keymaster

    Hi @maryjawad, I hope you and your son are doing well.

    This is a medication that I used for 14 years and it worked very well for me, as long as I used it consistently. However, everybody is different and reacts to the medication differently.

    It might be worth trialling the medication for a short period and see if you notice any changes.

    #17589
    Maryam Jawad
    Participant

    Hello, hoping you are doing well as well dear :)yes maybe that’s what we are going to do , we modify his diet and hydration more after his last crisis and we are observe how’s that work for him.Thank you, stay safe

    #17592
    Josephine giandalia
    Participant

    I will share my story of my son who started hydroxyurea when he was about 20 years old. Before that he was getting packed red blood cells every 3weeks since he was 5 years old. The decision to start hydroxyurea was easy for us since he was having crisis very often. His side effects were headaches and nausea. The upside was that his fetal hemoglobin shot up to 25 percent!

    He is now 45 and doing reasonably well. He also in addition started Oxbryta (not sure of spelling). The side effects of these new drugs stomach/nausea, are always an issue. He has not had a crisis in 3 years. But we have to weight the upside/downside.

    God bless you and your loved ones.

     

     

     

    #17610
    Ada G.
    Participant

    Hi, I was part of the study in 1990 when I was 25 yrs old,  and was started on hydroxyurea.  For me it was a life changing medication, my miracle drug. I went from being hospitalized every three weeks to being hospitalized every three years. And the crisis are not as severe as they used to be when I was not taking hydroxyurea. Unfortunately, the medication is not good for everybody. They have not figure out why, but they do see that it works for some and it does not work for others. The only thing you can do is give it a try for at least six months (that’s how long it takes the body to adjust to it) if it doesn’t work can you take him off. For me, my side effects have been elevated platelets but when that happens they lower the dose. Here in the United States studies have shown that children who have been started on hydroxyurea do much better than adults. For example there have been children who have been started at age 5 months and they grow up into an adult and they’ve never experienced a severe painful crisis. I wish I had a world like that.

    Bottom line is you have to take the chance.

    Best of  luck!

     

    Ada

    #17613
    Tito Oye
    Keymaster

    Hi @adagon23gmail-com, thanks for sharing this, I know people will read your contributions and find it helpful.

    I find it so interesting that you were a part of the study and I am happy to hear that it works for you! Do you still use it today?

    #17616
    Maryam Jawad
    Participant

    Thank you all for your valuable information and time for writing for me your experiences, This really meant  a-lot for me. I am really desperate and lost to be honest, I want my child to have this life without any worries or fear that the next day he will not be able to smile of pain. But, in the same times I am a worried mother that i will cause another issue for my son if I start the medication for him. I didn’t forgive my self still for bringing my son into this kind of life and right now this is my major concern. Looking forward for all your help .

    #17617
    viviane salzman
    Participant

    Maryam,

    It is always a pleasure to help in any way possible.  I totally understand your worries  and concerns, they are justified.  Having a child with sickle cell can be very challenging, even scary at times. Remember however, that your worries are not going to change the situation.  On the contrary, the stress will cause damage to your body and soul.  I know it is hard but try to  be strong and do exactly what you are doing right now – advocate, ask questions, educate yourself about this terrible disease.

    Honestly, I think that you are being way too hard on yourself.  No matter what decision you take for your son , he will understand later.  He knows that you love him and that you want what is best for him.  You did not bring your son to this, God did.  He gave him life and He will provide.  I have been living with sickle cell for 51 years and not once I have blamed my parents.  I am grateful for this life. I attend a sickle cell support group every month, and this subject was discussed a few months ago.  None of the sickle cell sufferers ever reproached their parents for bringing them into this world.  They all are happy to be alive.

    My mom is 82 years old and I am the one helping her out with her daily living activities, doctor’s appointments, advocating for her because that is what she had done for me all my life.  Hopefully one day your son will do the same for you.  All he needs from you right now is to love him and advocate for him as best as you can. My advice is not to treat him like he is different from any other healthy kids.  Sure he has some limitations but he is not less than.  I am grateful that my parents pushed me to become who I am today.  They taught me that I could do or become whatever I set my mind to.

    One more thing, while you are taking care of your son, it is imperative that you practice self care.  Do activities that you enjoy, eat a balance diet, follow up with your doctors’ appointments.  If you are not mentally and physically healthy, you will not be able to be there for your son.  I will keep you in my prayers.

    Take care.

     

     

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