What is Hemophilia
Hemophilia or haemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding. Genetic deficiencies (or, very rarely, an a...
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Ok i read a ladys entry about her 2 year old son that has sevier hemophilia about him always being in pain and not being able to sleep. my son is 4 months old now and we have already had a few ER visits. he is the happiest baby i have ever seen never crys for no reason and even when he has had a bleed he didnt cry. is there something i should know or look for in the future and is he going to be in pain for the rest of his life or am i just over reacting to something i have read about someone's son?
Posted on 09/01/07, 07:09 pm |
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I'm 22 and take AntiHemophiliac Recombinant Factor VIII. Although i'm not able to remember much when I was 2, I know that when I was around 5 I was never really in a lot of pain. I'm not in a lot of pain now. Bruises and cuts is probably something you'll see often, but I've been through it all. I felt it wasn't any different from any of the children I played with. But as a parent, you should always put extra care with injuries. I have lots of bleeds, but it isn't anything that worries me. As long as I am able to continue taking my medication as required then I feel that I'm able to live a normal life. I just accept that hemophilia is something that my family, my friends, and myself have to live with. 
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im 26 and my lil bro is 7 we both have it severe. Your baby will be fine treatments are much better now and even at the harder stages walking and stuff you cna use kneepads maybe a helmet my bro did at that age they think its cool and fun. Also most kids get at home treatments from the nurse now my mom use to do mine but i recommend a routine treatment plan lik 3x a week it prevents so many of them spontaneous episodes. When i was a kid i had to go to the ER every time i had a bleed and i turned out fine :)
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It's nothing to worry about (I am 24, with severe hemophilia A). Bleeds will hurt a little when your son gets them. However, when you grow up with bleeds and have them your whole life, you get pretty used to it. I'm sure your son will barely give them a second thought. Really bad pain is very unusual---your typical joint or muscle bleed does not hurt that bad.
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Well my son is 8 months old ad has had a very large share of bleeds and e.r. Visits. I remember when he was rly little he would scream non stop when he had a bleed but now he only fuses if I touch it. He had one in his ancle a few weeks ago and was happy and perfectly fine until I tried to change him into his pajamas then he cried a little and I noticed the swelling. Other than that he is always happy.
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