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Do any of you moms out there have sons with hemophilia?

I have 2 boys that have hemophilia type a severe...sometimes it get's a lil tough between all the hospital stays and the treatments...and not to mention my oldest boy feeling like he is different from everyone else....I am looking for other moms that may be dealing with the same or similar issues

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katiema08

Asked by katiema08 at 11:41 AM on Aug. 9, 2010 in Health

Level 2 (11 Credits)
Answers (2)
  • I have 3 sons that have an immune deficiency disease (CVID). They had to have gamma globulin IVs (IVIG) every 3 weeks at a major childrens hospital. They also had asthma and other medical issues and had to be seen at multiple OP clinics including the hematology clinic. They were the first kids in the state to be diagnosed with their disease and we were the only family that everyone in the family has it. I got sick when I was 32 and pregnant with the youngest. We were all diagnosed shortly after his birth.


    There is only a 64% 20 survival rate. It's been 22 years and we are doing OK. My 22 mo granson was diagnosed with CVID when he was around 12 mo.

    Gailll

    Answer by Gailll at 11:51 AM on Aug. 9, 2010

  • I have two boys. My youngest is six months old and he has hemophilia a severe. It was easy at the start but as he started crawling and pullling himself up we have spent alot of time at the ER. It is hard when noblody around knows anything about it and the people that think they do like doctors know nothing. It is hard to find other people dealing with Hemophilia. It is nice when you see other moms out there.

    Katrina
    takenforlife

    Answer by takenforlife at 8:41 PM on Sep. 3, 2010

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