Wednesday, May 21, 2014

Being An Advocate

Jordan has been dealing with Idiopathic thrombocytopenic purpura (ITP) for over a year now.  As we go through the process of understanding ITP and what it really means I have learned a lot.  One of the most important things I learned was that Jordan is the best advocate for herself, now that she is getting older and that I need to be a bigger voice for her if her voice is not being heard.

In March of 2013 she started taking Nplate for her ITP.  In the beginning it was working great.  Her platelets, which are usually in the below 50K (normal is between 150K and 400K), started climbing into the 100K.  Everyone was happy and we just kept increasing her dose very few weeks.  When she reached the dose of 225mcg, Jordan started getting sick.  Yes it was great that her platelets were in the 200K although it was not great that she was throwing up and having lots of problems.  Now here is the frustrating part in this situation.  When I talked with the doctor's about this they said "that is not a normal side effect of this medication, maybe something else is going"

These episodes of throwing up and being out of commission lasted for about 4 weeks.  She would get her Nplate, the next day she would throw up, she would be okay for a few days and then end up on the couch for a whole day.  It broke my heart seeing her sick and since we didn't know what was wrong we decided she needed to she a Gastro doctor, Jordan has 3 autoimmune disorders and we were wondering if something new popped up.  I knew in my gut it was the medication and I hated having to bring her to another doctor.

Well the Gastro doctor thought it would be best to do an endoscopy and a colonoscopy, which we did do just to make sure she doesn't have Crohn's or Celiac Disease.  She was a trouper about the testing and did great.  In the end she had a little inflammation although not enough for them to think it was anything important.

Now we have had all this testing done and proof that it is not something else so we asked to lower the dose of Nplate.  As soon as it was lowered she started feeling better.


Fast forward to May 2014.  Jordan is off of all ITP meds and doing great.  I will update on this at a later date.