The Long Story
Writing this is hard because now that we have a diagnosis we are seeing signs that maybe we shoulda coulda woulda seen before. In the end of April Henry started waking up in the night crying that his tummy hurt. After the second night of him waking up crying about his tummy I guessed he was maybe constipated and took him into the doctor because no kid should be crying in the night in pain like he was. Whichever PA or NP we saw ordered an x ray and we got a call next day that there was a normal amount of poop. I gave him medicine to help him poop and tylenol and ibuprofen for his pain and he pooped a couple days later and seemed to feel better. 2 weeks later when the same thing happened I took him in again. They ordered a CBC but I didn't want the xray because he was super upset the first time and I figured he would just poop and feel better. And he did. The CBC was normal. Then last day of May, seemingly unrelated to his tummy, his wrists started hurting in the night and by 8am both his wrists were hurting and then his elbows so I took him in. He would not move his arms. He cried the whole way, worried about pokies (shots) and hurting and holding his arms down by his sides. The P.A. was very worried and ordered x-rays guessing Rheumatoid arthritis with the way he was hurting and where. The x-rays were normal. The blood work came back high inflammation, no rheumatoid factor, and positive for autoimmune. There was a mix up at the lab we used and they missed the cbc but Henry had had one on the second visit for his tummy.
The rheumatoid factor was negative which is very common in peds patients, and so everything looked like RA. A steroid to help with the inflammation was prescribed and really helped. We were referred to a Rheumatologist at Primary Children's Hospital (a teaching hospital connected to the University of Utah Hospital and the closest hospital with children's specialists in most all of the specialties).The appointment was set for October 16th. The soonest they had open. Henry did a course of steroids for a week and he seemed much better. I don't know how long after that first course that he started hurting again but the gap was short and we called about every week and a half for another seven day refill. He would have a fever and pain that got to the point of giving him lortab to help him be at least comfortable whenever he wasn't on the steroid. In mid-August we suspected some of our kids had strep but Henry seemed fine so we didn't have him tested. He had been resting all day and went to bed easily because he was tired and at 11 when I was getting ready to go to bed he woke up crying. His glands were swollen and looked like he had the mumps. We guessed he was sick and it maybe had something to do with autoimmune issues but it had happened so fast and looked so severe that my husband took him into the emergency room. And they ran a bunch of tests and said he had strep. He was miserable and by now knows what "blood work" means. He was so upset about needles and possible shots and pokes that he threw up. And then they got an iv in him and gave him antibiotics and said his swollen glands would go away after the antibiotics. About a week later we went into the doctor because he still looked like he had the mumps and just to check in with everything. They did a finger poke and his white cell count was low but only one point below normal range and his lymphocytes were just one point over the recommended normal range after everything else he had been through and considering the RA concern the doctor wasn't very concerned with his numbers. The swelling did go down but Henry stayed lethargic often putting himself to bed when he got tired. I took him into the doctor again thinking he had caught strep again or that the higher dose of steroid he was on really wasn't helping and we would be out of it in a day. By this point I could tell when he was declining which usually happened between his 7 day steroid prescriptions. He just looked like he wasn't feeling well but he was still playing and chatty. He told the nurse his favorite line from Prisoner of Azkban while we were in the Harry Potter room waiting to be seen. Two days later he was screaming in pain which is when we decided to drive the 3 and a half hours to the ER. Of course the next day He perked up and seemed like he would be ok. Since it was the weekend we wanted to go in on a week day with a better chance of seeing the Rheumatologist and getting testing for that started. So when Monday morning came and we had debated all Saturday and Sunday that he was feeling well we just decided it was bad enough whether he showed symptoms or not that we wanted better answers. We drove down and on the drive he took a dip again on his pain and his temperature went up.
The rheumatoid factor was negative which is very common in peds patients, and so everything looked like RA. A steroid to help with the inflammation was prescribed and really helped. We were referred to a Rheumatologist at Primary Children's Hospital (a teaching hospital connected to the University of Utah Hospital and the closest hospital with children's specialists in most all of the specialties).The appointment was set for October 16th. The soonest they had open. Henry did a course of steroids for a week and he seemed much better. I don't know how long after that first course that he started hurting again but the gap was short and we called about every week and a half for another seven day refill. He would have a fever and pain that got to the point of giving him lortab to help him be at least comfortable whenever he wasn't on the steroid. In mid-August we suspected some of our kids had strep but Henry seemed fine so we didn't have him tested. He had been resting all day and went to bed easily because he was tired and at 11 when I was getting ready to go to bed he woke up crying. His glands were swollen and looked like he had the mumps. We guessed he was sick and it maybe had something to do with autoimmune issues but it had happened so fast and looked so severe that my husband took him into the emergency room. And they ran a bunch of tests and said he had strep. He was miserable and by now knows what "blood work" means. He was so upset about needles and possible shots and pokes that he threw up. And then they got an iv in him and gave him antibiotics and said his swollen glands would go away after the antibiotics. About a week later we went into the doctor because he still looked like he had the mumps and just to check in with everything. They did a finger poke and his white cell count was low but only one point below normal range and his lymphocytes were just one point over the recommended normal range after everything else he had been through and considering the RA concern the doctor wasn't very concerned with his numbers. The swelling did go down but Henry stayed lethargic often putting himself to bed when he got tired. I took him into the doctor again thinking he had caught strep again or that the higher dose of steroid he was on really wasn't helping and we would be out of it in a day. By this point I could tell when he was declining which usually happened between his 7 day steroid prescriptions. He just looked like he wasn't feeling well but he was still playing and chatty. He told the nurse his favorite line from Prisoner of Azkban while we were in the Harry Potter room waiting to be seen. Two days later he was screaming in pain which is when we decided to drive the 3 and a half hours to the ER. Of course the next day He perked up and seemed like he would be ok. Since it was the weekend we wanted to go in on a week day with a better chance of seeing the Rheumatologist and getting testing for that started. So when Monday morning came and we had debated all Saturday and Sunday that he was feeling well we just decided it was bad enough whether he showed symptoms or not that we wanted better answers. We drove down and on the drive he took a dip again on his pain and his temperature went up.
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