Friday, March 22, 2013

Hoping for real answers on Monday

It seems like it has been a long time since I have posted.  I don't know where my days go!

Overall, Zach is still doing pretty well.  We have noticed that he simply cannot handle being on his feet for long before his heels and ankles begin to hurt.  It isn't the end of the world, but it isn't fair to him when we go places, like Lego Land with our favorite arthritis families!  It was so wonderful to see so many of our extended family members, as well as meet a few whom I have been typing to for years!  It was tough on Zach, though.  I never think to get him a wheelchair.  We should have.  Next time.

I'm not really certain where to start with Emily.  The easiest part is Actemra.  The first three doses seemed to give so much promise; they all bought her about eight mostly pain-free days.  She has had five doses now, I think, but the last one only worked for about two days.  We have spoken to our rheumy group about that, but for the moment they want to see if it will kick in.  If it does not, I am not sure what our next step will be.  She consistently hurts in her knees, hips, back, ankle, and shoulders.  This is the worst that she has felt in quite some time.  She is moving around less and less, because it is so difficult and her balance is off.

The other problem with her right now is the continuous headache.  We have been on the runaround, which I am putting a halt to.  I had mentioned it to our rheumy group the past month or two, but at the time it wasn't significant.  More recently, she started pressing the issue more, so we have delved deeper.  Our pediatrician had sent her for a CT of her sinuses.  The CT came back that she was still congested, but also it claimed that her molar roots were spreading into her maxillary sinuses.  Next step was the dentist.  We had a panoramic done, which our dentist does not think looks as though the roots are an issue.  He referred us to an oral surgeon.  All of that is lovely and all, but I still did not have a reason, so we decided to see our pediatrician.  She concluded that it is likely her TMJ joints in her jaw- the only joints that did not "seem" to be affected prior to this.    So, in desperation I called our rheumies.  Because the scheduler's had messed up our appointment times this past month, we skipped seeing a doctor when we were there.  (I should have bugged our rheumy at Lego Land, but even then I did not realize how much these headaches were affecting her!)  I left a detailed voice mail on Friday afternoon which likely held a note of desperation.  They called me back fairly early on Monday.  Tomorrow we are going locally for two head MRI's.  Hopefully one will be MRI and one will be MRA.  The MRI's will be of her sinuses and TMJ joints, and the other will be of her brain to (hopefully) rule out vasculitis.  These headaches have consistently been about a 4 for her for at least the past month.  Nothing that we do here helps.  Antibiotics had no effect.  She can have 325mgs of Tylenol,  but that's it since she is on Mobic.  She needs the Mobic more for her joints right now.  Tylenol does help her joints a bit, but not her head.

She also popped out here a bit ago to tell me that her chest is hurting again.  We have established that it hurts when she breathes, so tomorrow we will dig out our nebulizer again.  I will have to add that to the list of things that we discuss on Monday at the hospital.  The wonderful thing about having the MRI locally is that we should have answers to our questions about her head on Monday- at least some!  Hopefully they will be able to listen to her chest then, also.  She is already on Symbicort and Singulair daily.  I would like to add Spirulina, the natural blue/green algae.  I have to make sure that it will not interact with her other meds.

Please keep us in your prayers, if you would.  This has been a tough time.  She doesn't want to do anything or go anywhere.  I really feel that having our puppy is such a blessing to her.  He has been so great lately, and he really helps to take her mind off of things, or at least he gives her something good to focus on.

One last thing:  Zachary will be ten on Sunday!  I am not sure where the time went, but he is so sweet, so smart, so funny and loving.  I am so thrilled that he is my boy.