First Treatment Date Set

Posted by Melissa | Filed under Appointments, Treatment

Finally, some progress has been made – we have a date for Kyle’s first enzyme replacement therapy session.

His appointment was originally set for tomorrow, but unfortunately, his Doctor was not able to be there to supervise his treatment, and then the doctor they had lined up to replace Kyle’s doctor is also away. So with no doctor available to supervise him tomorrow, his first treatment has been scheduled for May 13th.

They are starting him out at a very high dosage because they really want to get his liver and spleen back down to normal, so that means he’ll be hooked up to an IV for 6 hours. When I asked how long it would take to see a difference, she said it would happen really quickly – not overnight – but we’ll see an improvement pretty fast because he’s on such a high dosage. Once things start to go back to normal, his dosage level will go down and he won’t have to spend so much time tied up to an IV.

I’m so glad that he’s finally going to get the treatment he so badly needs. This will increase his comfort level, his breathing, improve his appetite (I think because his tummy will have room to expand and he won’t feel full after so little), he’ll grow (I’ve heard of kids having growth spurts after getting started on treatment), it will prevent bone pain and crisis…basically it will stop and reverse all the symptoms of Gaucher disease, except for the neurological effects associated with Type III.

Permalink | Comments (7) | May 6, 2009

7 Responses to “First Treatment Date Set”

  1. Ann Says:
    May 6th, 2009 at 7:27 pm

    Thats is such good news! I can’t wait for you to post how well he’s responding to the treatment! :) . If ya need to chat you know where to find me, lol.

  2. Bonnie Says:
    May 7th, 2009 at 1:19 pm

    Great news! Yes, it will be interesting to see how soon you notice a difference. Are there any side effects from having the IV?

  3. Michell McKellar Says:
    May 7th, 2009 at 2:19 pm

    I am so happy Kyle finally has an appaiontment set!! Hopefully his enzyme treatments work wonders for him!

  4. Patti Says:
    May 7th, 2009 at 3:41 pm

    I’m so relieved i have felt his pain and know how hard it is for him to just breath.But i can’t believe that no Doctor was able to be there for this what a disappointment that is.They know how important this is for him to get started.I love bunches Kyle
    Love Grandma W.

  5. Melissa Says:
    May 8th, 2009 at 2:22 pm

    Thanks everyone!

    From what the doctors in Toronto said, since this treatment has been made available, no one has ever had problems or side effects from it.

  6. Sarah Zeldman Says:
    May 9th, 2009 at 10:33 pm

    I just found your blog. So you’re in Toronto? How long have you been here? Is there anything you need?

  7. Michell McKellar Says:
    May 13th, 2009 at 5:22 pm

    Thinking about Kyle today, his first treatment day! Hope everything goes well :)

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