A New Drug?

Mia had two trips to the hospital last week and is scheduled for another this week.  With school off for Rosh Hashana last week and Yom Kippur this week, we've scheduled two days of (8hr) desferal drips to help chelate Mia's iron.  She had a transfusion on Friday.  But some things may be changing in the near future!

Her doctor talked to us about moving to a new chelation drug.  This drug has been around longer than exjade (her oral med) but has not been made available in the US until recently.  It has one potential side-affect in addition to the ones that go with exjade and desferal.  In a small number of patients, white blood cell counts drop.  These are crucial to fight infection and would need to be monitored closely.  If her white count drops, she would come off the drug immediately.  The damage is not permanent, and white blood cell count would build back up again.  That's the potential down-side.

The upside?  Quite a bit of upside.  If the drug works on her (and studies show it to be pretty effective) No more needles at home! No more nasty tasting juice concoctions in the morning and half hour waits for breakfast.  No more extended hospital stays.  She would simply take a pill (with water and food) three times a day. FANTASTIC!  This little girl is excited to give it a try.  And so are we.

We filled out paperwork to give it a try and should begin doing so in the near future.  Her transfusions, will, of course, continue, but this would be a great change for the rest of her care.  Please pray that it works without the nasty side affects!

(Dad)