Sikcell: People living with Sickle Cell
We still Hope
HYDROXYUREA FOR KIDS
I was wondering if anyone could give me some feed back on this.Today I took my 20 month old who has Sickle Cell SS to her regular hemotologist appt and even though I have done my research her doctor has put he on Hydroxyurea.My baby eventhough she has minor aches from the sickle cell she has never had a crisis before and she appears to be doing good with the disease.So I have a few questions for anyone that can answer them.Has anyone seen a difference in their health while taking this drug? and does it really work in preventing fewer crisis?Also if anyone can give me some better info on this it will help. The doctors can explain things to you but it sounds different coming from people that really know! Thank you!
Replies to This Discussion
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Permalink Reply by STEPHANIE SCOTT-MILLER on
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I am new to all this.. My 2 year old grandson has come to live with me and last week he had a crisis that was so bad I wanted to die if GOD would let him find relief.. I am hearing about this hydroxyurea and will do my research but I think if it is going to help him avoid this type of crisis then it is worth it.. There is nothing more scarey than a baby in so much pain that they do not want you to touch them!!
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hello, i have been on Hydroxyurea for some years now and i can honestly say that i have experience less crisis since on it...i have to say as good as it is, it comes with different sidse effects. in mu case it works but i have heard from other ppl that feels the opposite of what i feel.
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Permalink Reply by Princess Aleah on
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Hydroxyurea is a good medicine for certain people. It depends on your gene type. As for me it didn't help me one bit. Before i started taking hydroxyurea i have been out of the hospital for 2 years plus. The doctors decided to put me on it because i have had many acute chest before and they said it will reduce the amount of acute chest that i have and pain crisis. So i decided to take it being that it would be something that would help me with the pain and keep me out the hospital. At 1st i have to admit it did help. I took it every day and then they decided to up my dose since i was doing so " well" on it. After increasing my dose i started to feel changes in my body. I began getting sick and needed to take a lot of pain medications and such. My hair started falling out in big chunks and all kinds of stuff. After that they increased my dose again to 3 pills daily. Different side effects came about so i switched from the pill to the liquid form thinking it would make a difference.My stomach started hurting me every time i took it and the doctor told me that i should try taking it with food and try a medicine for upset stomach ( tums).They said that noone has ever complained of stomach pains while taking hydroxyurea and it's just me maybe i'm not taking it as im suppose to. Now i have been having so much pain in my stomach that i have to go to a doctor so they can view the inside of my stomach. I stopped taking the hydroxyurea since last year ( bet jan-april 2009) and only been in the hospital twice ( actually being admitted) once for a full body pain crisis and the next was for foot pains which the doctors said wasn't related to my SS. Since my last hospitalization ( foot pains) i haven't been admitted to the hospital in over 7 months. I thank God for his healing because the doctors don't know whats wrong and they only give you a set of pain meds that just causes more problems in your body.......Not trying to stray you away from using the medication but i was just telling about my experience. My advice to you is to get blood test done to see if the medication is making a difference and ask your doctor LOTS and LOTS of questions if you don't know what he/she is talking about. God bless hope all goes well for you and your daughter.
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I pray that my 2 year old grandson is one of those that benefit from the hydroxyurea... He has had pain crisis and been hositalized 4 times since February.. We cannot send him to daycare in pain so someone is going to have stop working to take care of him and then I do not know now we will pay our bills.. This is soooo stressful and frustrating.. We want the best for the baby but how do people survive taking care of a sick child... Thanks for your input and I will monitor his blood counts while on this drug...
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God is able to do all things. Keep praying and asking God for help and guidance he will supply all your neefs just put your faith in God and your bills will be paid. As for how people survive its very stressful. My parents use to take days off from work when i was younger because they were scared that something will happen to me now if i get sick they just pray and leave it in God's hands. You shouldn't let this "sickness" get to you. You have to stay strong and make sure that your grandson is well hydrated especially in the hot months. We can't be too cold or too hot. If he likes going in the water ( pool or the beach) make sure its not extremely cold because he can get sick from
that. Continue to read up on the disease and also the effects of the medication because there are a lot of side effects that can cause problems later on in life. Me personally i dont like the medication but i tried it because they said it was good and would increase my life span. Now i'm trying it God's way and i've been in good condition since i stopped taking it. Feel free to ask me any questions you may have.
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Permalink Reply by jerome crawford on
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my name ia jerome thank for your infro. I trust God and I know He willnot put more on His children than they can bear. I don,t know many young lady . Nice to know you be bless
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how long were you on hydroxyurea and what was some of he side affect. do you think it help or were you doing about the same or better as far as pain or acute chest
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Permalink Reply by Sharolyn Hutchinson on
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My daughter started taking Hydrox when she was 10. I dont see the difference but the dr says her blood work is better since she has been taking it. My daughter did not start having crisis until she was like 10 or 11. When she turned 13 it really got bad and still is and she is now 16.
I hope you daughter continues to do well. Trust your instincts.
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My grandson is almost 3 years old and a couple of months ago the doctors put him on the Hydroxyurea because of his constant bouts of crisis and the last one was the acute lung syndrome. We were so pleased with the results of the hydroxyurea because he had been in crisis every couple of weeks and it was becoming overwhelming.. Since on the hydroxyurea he has had less episodes of crisis and his hemoglobin was last at a 10.5... They recently increased the dose of the medicine but I thought if it was working why bother it.. Anyway I will let you know how we progress.. Thanks for sharing everyone!!
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