One Step Forward. Three Steps Backward.

Yes, that seems to be the dance we're dancing lately with John's diagnosis ... or lack thereof.

Tuesday was John's first follow-up appointments (three to be exact) with different doctors at Riley since he was  down there in the hospital.  He had appointments with his ophthalmologist, rheumatologist, and ENT ...

Appointment One :: Ophthalmologist
John sees an ophthalmologist every few months because the JRA can also attack the eyes.  The bad part is that by the time outward symptoms show, the vision is almost guaranteed to be lost.  The doctor dilates his eyes every couple appointments and looks at the backs of his eyes at each appointment. John does surprisingly well with all of this. We make a game of his putting his chin in the little chin rest of the machines and his forehead up against the top bar part.

At this last appointment the doctor did not need to dilate John's eyes because they'd just been dilated when John was admitted to Riley in December. She kept repeating one specific test with him and saying "hmmmm" a lot, so of course I asked if everything was okay. She mentioned the fact that John holds his head very far to one side, but I could not figure out why that would make any difference for an eye exam. After finishing the test (again), the doctor told me that she is almost certain that there are six nerves surrounding the eye, and John has one above one of his eyes that is misfiring, per say. The misfiring causes double vision when John holds his head upright and normal, but if he tilts his head to the side, the double vision clears. Odd, right? What could possibly cause that kind of thing? Glad you asked! Apparently, this problem is most often seen right after a virus or infection occurs. Makes sense considering John started tilting his head to the side just a day or two before we left Riley (remember, he had the mastoiditis of his ear and the bone behind the ear).  The only way to fix the nerve and correct the vision and head tilting is with surgery.  I don't know the details on the surgery or recovery at this point, but we go back to see the pediatric ophthalmic surgeon on March 22.

Appointment Two :: Rheumatologist
Dr. Chira is John's rheumatologist.  From the beginning he has been baffled by John's case because John does not present classic symptoms of any one specific disease.  Tuesday, Dr. Chira decided that he no longer feels John has JRA, but he still cannot give us an answer (or now even a guess) as to what John does have. He tried to tell me that John may just be "confused" and "feeling an odd sensation that he can't describe, so he just says 'ow' to describe it."  This really ticked me off because a toddler does NOT wake up crying in the middle of the night and holding his knees/ankles/elbows and saying, "Mama, it hurts! It hurts!" because they are confused about some strange feeling. And boy, did I let the doctor know that I felt that was ridiculous! He then told me that John is apparently just having some random sort of chronic pain that has no rhyme or reason and can't be diagnosed or pinpointed ... I also let him know how I felt about that load of bologna!! Josh and I absolutely REFUSE to be told there is not reason, diagnosis, etc. for John's pain. We KNOW there is SOMETHING going on inside his little body, and we will NOT stop until we find out exactly what it is! He was a perfectly healthy child just six months ago, and we want to know what has taken that away from our little man.  After arguing with Dr. Chira for quite some time, he finally said he would consult with a neurologist and the pain team to find their thoughts on John's pain.  We see him again on March 22 as well.

Appointment Three :: ENT
I was very thankful John had a follow-up appointment with the ENT who placed the tube in his left ear (while he was admitted to Riley in Dec) because as I put John into the car in the morning, his ear started draining this disgusting goopy stuff! ... The doctor was quite clearly NOT used to working with very very young children like John. He was very clinical and not especially "fun" when he tried to get John to cooperate with different things. I was not impressed, but I guess he checked what he needed to check in John's ears. He said that the drainage is from yet another ear infection, but the good news is that the tube is doing its job!  He gave us a prescription for ear drops that need to be used twice a day in that ear, so hopefully they'll do the job!


The long and short of the story is that we are once again without a diagnosis and treatment plan for John.  This frustrates us like none other, but we refuse to be told there is nothing that can be done and that there are no more options. There have to be options. There have to be explanations. We will do absolutely everything and anything we need to do in order to find them. For now, John's medications are being switched around a bit. Dr. Chira wants us to wean him off of the tylenol a little bit and see how John does with less/lower pain meds. We're also still waiting (about six more weeks, give or take) on the genetic blood panel to come back with results.  Hopefully those will tell us more.  Until then, all we can do is as much research as possible. I am reading up on chronic pain in children, JRA, and some other things. Perhaps those will give me some insight or direction on what we can do for John or where we can take him.  Please continue to keep him in your prayers as this road has just gotten more frustrating than ever before.