W A S Update

Discussion in 'Parent Emeritus' started by PonyGirl, Jan 7, 2009.

  1. PonyGirl

    PonyGirl Warrior Parent

    S saw a Pediatric Specialist on Tuesday. She, The PS, and her OB will pick a date within the next 2 weeks for a C-Section to deliver Julius. They do not want S to go into labor, due to one of the issues with W A S can involve uncontrollable bleeding, and they don't want his head to get squeezed. Also, no circumcision will be performed.

    No cord-blood transplant can be done, as his cord-blood already carries the W A S markers.

    Julius will be symptom-free for his first 6 months to a year of life. (YAY! Bonus!) This is because he will still be processing S's healthy blood. As he begins to generate blood from his own systems, then we will see what symptoms he will experience of W A S.

    He will be watched closely for easy bruising, weight loss, nose bleeds, etc.

    S has an appointment. with her OB tomorrow morning. I will take her & difficult child. At this appointment., they will pick out Julius' birthday! (Kinda weird to think about it that way)

    In the future, if he needs a bone marrow or stem cell transplant, this will be hopefully matched with either of his parents or his half-sister. I guess we could go on down the line of aunts, uncles, and grandparents. Not sure about that. An unrelated match can be used if no family is a match.

    So, that's what we know for now. I'll pop back in tomorrow when I know the date of the blessed event!

  2. bran155

    bran155 Guest

    Just wanted to send some (((HUGS))) and wish you luck. :)
  3. bran155

    bran155 Guest

    p.s. love the name Julius!!! :)
  4. Hound dog

    Hound dog Nana's are Beautiful

    Julius has all his board great aunties praying hard for him.

    Are they going to have potential matches scoped out for him before he begins to show symptoms? You know, test family members before hand to see who matches, so all that doesn't have to be done after syptoms occur. So you can just get straight to treatment?

  5. PonyGirl

    PonyGirl Warrior Parent

    Lisa, that is a question on my list!

  6. judi

    judi Active Member

    That should be possible to pre-test donors so that all is in order when he needs the transplant.
  7. DazedandConfused

    DazedandConfused Active Member

    Twisting myself into pretzel so that Julius will deliver with no further complications and that an EXACT match will be found among the family.

  8. Suz

    Suz (the future) MRS. GERE

    Wouldn't it be just wonderful if his complications could be headed off- or alleviated- at the pass?

    Fingers crossed, PG.