Monday, January 20, 2014

My daughter

I just realized that I never wrote about my daughter and her diagnosis.

It's been a bit of a trip, with my misunderstanding what the diagnosis actually WAS when we talked over the phone and only last week getting the right information.

Yes, my daughter tests positive for having a mast cell activation disorder. Elevated prostaglandins. However, her histamine levels were normal. We tried anti-histamines, but they didn't make any real change, not a surprise there.

Unfortunately, she doesn't have any testing results that indicate that this is the reason for her stomach pain, so we will have to try a bit to see if any treatment for mast cell issues is ALSO helping her pain. Low dose aspirin therapy is up next to try, which we're getting compounded to make sure it is gluten free, tomorrow.

My ex wishes to remain skeptical of this and wants a second opinion. But he also remained skeptical that I could have any non-'all in your mind' things going on with me before my diagnosis, either. A second opinion isn't a bad thing, however, consider what the diagnosis is for, really.  So, I'll have to set up a letter to ask for that, soon, too. However, for the moment, it's a...preliminary diagnosis, I guess.

I'm...emotionally overwhelmed. Tired, right now, and trying to think of what to do for her.

The one good thing to come of this so far is that it gets my mind thinking about her problems in terms of mast cell issues. 'If she DOES have a mast cell issue, what could be causing this?'

And so far it's born fruit. She gets these periods where she can't get warm, which in mast cell folks can mean a blood pressure drop. We have a blood pressure cuff, and sure enough, her blood pressure was low. It wasn't dangerously low, but lower than it normally is, and stayed low for over an hour, so I'm hoping that for the future, this will continue to be helpful in such a way.

I am now blogging more about mast cell activation issues and having a chronic disease on my other blog, Striped Horses.

No comments:

Post a Comment