Ready or not.... it's time for dex

OMS is an autoimmune disease that is full of shades of gray... it's so hard to know if something is is going on with Keira.  The one thing that is absolute is when we see a hand tremor.  Keira went to see OT on Monday and unfortunately, Eiri was able to confirm what we have been worried about.  Keira's arms/shoulders are ataxic and she has a slight hand tremor.  Even with her OMS symptoms coming back she is in the 65% for her age range and Eiri was impressed with the amount of growth Keira has shown since she last saw her in December.   That's our girl.  :)

Now that we've "hit the wall" so to say with the prednisone wean twice it is time to change our course of action.  We knew that it was a very real possibility that we would have to switch from prednisone to dexamethasone but it doesn't make it any easier.  Dex is 6.6x's stronger than prednisone and is quickly becoming the steroid of choice when treating OMS, especially in Europe.  It is believed to better penetrate the blood brain barrier (BBB) and penetrate the cerebral spinal fluid (CSF).

Dex is given in a pulse dose in a 28 day cycle.  Keira will receive 12mg of dex on day 1, 2, and 3.  This high dose of steroids is meant to "shock" the immune system and suppress the OMS antibodies.  We are also hoping that once Keira is stable and her symptoms have disappeared we will be able to finally get her off the prednisone.  Unfortunately we can't just stop the prednisone cold turkey.  We are actually going back up on the prednisone to the dosing we know she has been the most stable at - 6mg every other day.  

As with any steroid dex has its nasty side effects and the one that will be most obvious is behavior.  If you've ever been on steroids you have an idea of what poor little Keira is going to be going through.  Everything is more intense and little things seem like big things.  A typical 3 year old already has a lot of emotions and control issues to deal with... and with such a high steroid dose, we are all going to need daily reminders to be calm and patient.  :)

When I talked to Keira about her new medicine she was very grown up about it.  We talked about how it was going to be bitter but it was important that she just swallow it quickly.  She asked if she could drink chocolate milk right after to take the bad taste away.  We also thought it would be a little more fun if we put some sprinkles on top.  So... the little blue dex pill is crushed, put into vanilla yogurt with sprinkles on top.  Keira took both doses today without a problem.

Fingers crossed she keeps it up!

I attempted to sing, "A spoonful of sugar helps the medicine go down..." and K looked at me like I was nuts.  Guess we will have to find a time to show her Mary Poppins.  :)