Neurologist Appointment Day

So we've finally made it to the day we've been waiting for; our pediatric neurology appointment is scheduled for this afternoon.  I thought I'd start the post now and finish later this evening with what the neurologist says.  Thomas has been doing okay the past few days.  I realized I need to clarify that when I last posted, I said that we had gone 9 days without dizziness but that wasn't completely true.  We'd gone that long without any days where he couldn't walk or needed assistance holding on to things in order to move about.  As is common when helping children it's hard to know the exact level to which a child is feeling something such as pain or in this case dizziness.  Obviously, we can tell when it is really bad because he doesn't move around much and he also doesn't talk a lot.  He rates his pain and dizziness etc... on a 1-10 scale for us so we can gauge how's he feel he's feeling.  The dizziness is still present to him ranging somewhere on that scale from 1/4 to 4.  Same with his headache.  This is definite improvement over where we've been but we still need to get him pain free.  His legs continue to be his biggest complaint.  They hurt all day and become unbearable around bed time.  We've been doing massages, baths and different oil combinations but he's not getting much relief.  He consistently rates his legs as a 6 or higher. 
Yesterday, he spent hours filling water balloons so we could have a family water balloon fight and toss when Daddy and Cassie got home from there jobs.  He was pretty worn out by then but he still had fun.

All the water balloons he filled

He also swam in our pool.  He says his legs don't hurt as much in the pool.  Joe said they likely go numb.  That made me laugh- he's so practical.  We just set the pool up this weekend so the water is pretty chilly.  He was pretty talkative yesterday and even did schoolwork including some worksheets.  Today he's quieter but he's enjoyed playing Minecraft with Chris and he attempted a short dip in the pool this morning only to discover that the air temperature felt colder than the water.

So after 2 hours with the nurse practitioner, resident student and the neurologist, Thomas was pronounced completely neurologically healthy.  He was told to resume full activity including hockey on days he feels up to it.   She said we could run so you know what we did when we left?  We ran full speed down the ramp in the parking garage holding hands laughing and rejoicing (and yes watching for any moving vehicles).  On the way home he requested being able to run from the end of our drive (about 900 feet) to the house.  Of course we let him!

Running up the driveway

She did not have any idea what might be causing his headaches, dizziness, leg pain, skin issues etc....  She suggested Vitamin B-2 Riboflavin for headaches and gave us a prescription for a migraine medicine should he ever have one again.  They also recommended exploring acupuncture, massage, biofeedback and play therapy to help him deal with the chronic pain.   

After dinner run in the rain with Cassie

I however, feel like NOONE gets it!  (Except a dear friend of mine who has had similar issues).  Mainly the doctors, they just want to pick him apart symptom by symptom and not look at him as a whole body.  We are missing some piece!  I think the supplements might be helping at least with his headaches and dizziness as they are much less severe currently.  I just keep hoping it will last. 

I stopped at the library tonight after dropping Mackenzie at Youth Group and got a stack of books.  We just got home and she picked up one and read the Title "Lyme Disease" and looked at a few others and said "Wow, Mom have fun reading".  Hear the preteen sarcasm....  

We have a followup with the family doctor Friday morning to begin discussing any further course of action etc....  For tonight we are celebrating his laughter and silliness!