Jeffy's Pain

The day Thanksgiving Break started was the day Jeffy started acting funny. Just odd, weird, fussy behavior. As the weekend progressed, his fussy behavior was accompanied by slow movement. He wanted to be held all the time, he was waking himself up by crying in the night. There weren't any other symptoms, though, so we didn't really know what to make of it. He then started showing a strained face whenever he had to hold up his neck, or go from a lying down position to a sitting position.

Sunday night, I realized that he didn't seem to be getting any better, so I told Chris he would need to try and get him into the doctor on Monday. The word meningitis had been suggested to me, so with that scary thought, I went to work, and Chris took Jeffy to our pediatrician on Monday. At his appointment, our pediatrician agreed that something was indeed wrong, but was confused by the lack of additional symptoms. So she ordered a slough of blood tests to be done, which Chris immediately took Jeffy to the lab to take care of. Jeffy and Chris came back home, and Jeffy's symptoms got worse. He was soon dragging one of his legs while he crawled, straining to move his head or body in any way...we were puzzled and worried, and had no idea what was wrong with our dear boy. I went to work on Tuesday, still thinking that it just might be meningitis.

It's never good when the pediatrician calls after hours. Our call came at 9:00 pm at night. The blood work results had come in. Jeffy was normal in all tests...but one. His SED (sp?) rate was abnormally high. The SED rate measures the amount of inflammation in the body. Normal is 5. Jeffy had 60. Our pediatrician mentioned two possibilities...arthritis or another type of autoimmune disease. We didn't really know what to make of these...and tried to let the information settle that night. The next day, our pediatrician called the specialists, and determined that Jeff needed to get in to a rheumatologist who deals with children with arthritis. I was a bit persistent with both offices, and was able to get Jeffy an appointment with the specialist for the 18th of December. The rheumatologist was quite insistent that he see Jeffy in two weeks, which apparently is rather rare. The usual wait is quite a bit longer.

Meanwhile, starting on Tuesday, Jeff wasn't able to stand up in his crib...or sit up. Or turn his head. He was crying and we knew he wanted to get up, but he just wasn't able to move. When I would go and get him out of his crib in the morning, his whole face would screw up in pain, and his entire body was rigid with it. I would lay him down on the ground so that he could play and he wouldn't move...at all. He would reach over for toys with his hand, but be unable to turn his head to look for them. We had to take to placing lightweight toys on his chest so the he could feel them, although he was not able to see them since that would involve moving his head down slightly. It was horrible. I've never seen any of my children in such terrible pain. He was on an anti-inflammatory, but about 2 hours before he was able to take his next dose, the medication would wear off and he would go back into the paralyzing stiffness and pain. When I called my doctor about that yesterday morning, she was shocked, and asked for us to come back in this Monday, but also added that he could have Tylenol halfway through the doses of Ibuprofen. This certainly seemed to help. When the pain medication had kicked in, he was totally different. As soon as it started wearing off, the pain was easy to read on Jeffy's face and in his movement.

So naturally, I've been reading up on Juvenile Arthritis, wondering if this could indeed be what is plaguing my son. It's a chronic, lifelong illness that can prey upon the young and can cause debilitating flare-ups that sounded eerily similar to what Jeffy is going through. As I started reading, I started to kick myself as I wondered if this was why Jeffy, at the age of 16 months, was still unable to walk, why he never put pressure back when someone would try to stand him on their laps, why it took him so long to start crawling, why he would sometimes move around with one leg looking as though he was trying to stand, and the other one dragging in the crawling position...I'd always been reassuredby others, and reassured myself that it was because of his skull and brain surgery, and that he was simply behind because of that.

And it still may be. Jeffy woke up this morning in a delightful mood, without the ibuprofen that he's been depending on for the past week. He seems to be moving well, at least well enough to crawl, although he's getting a little slower as the morning goes on. Is this episode over? Is the whole thing over? We'll find out soon enough I guess. For now, I am just so glad that his pain has subsided for the time being. I had forgotten what a happy child he normally is until he woke up this morning in such a good mood. He'd been so sad, so irritable, so full of pain, he had become a different child.

So we'll see what our pediatrician says on Monday.

And, as in all things, we will be put our baby boy back in the arms of his Heavenly Father, who in all things has been his Protector and the Keeper of his life.