May was a heck of a month for Spencer. I suppose that the trouble actually started back in February when he got an ear infection for the first time since toddlerhood. It took two rounds of antibiotics to clear up that infection, but the fluid never really drained. So at the end of April when he got a cold, his ears were almost immediately infected again. A trip to the doctor confirmed that his right eardrum was cherry-red and bulging and the left one was also bright red, although not bulging as much.
It should be mentioned here that we have been in the process of trying to get Spencer evaluated for Auditory Processing Disorder. After trying to figure out for quite some time why he struggles with language, syntax, following directions at an age-appropriate level etc I began to test what he was actually understanding. He is bright and has developed great coping mechanisms, but it is obvious that there is still much that he misses in conversation, especially when there is other noise or activity around him. His Occupational Therapist has noticed the same sorts of things, noting in her most recent evaluation that Spencer only responds to his name 3 out of 7 times in a quiet room and failed to respond to his name 3 out of 3 times when there was other activity around him. Yes, even though he loves everything he does with Miss Linda he fails to respond to his name. I could go on about this, but I will save it for another post. For now, suffice it to say that we really need his ears healthy for the evaluation.
Given the circumstances, we did not want to let the infection go until the drum burst - scar tissue would help no one. So the doctor prescribed Augmentin, an antibiotic he has had in the past, and we headed home.
One week after starting the Augmentin, as he was heading up to bed, Spencer complained that his knees hurt. This is not unheard of for Spencer: he has been known to complain of aching legs in bed at night, but by the time he wakes in the morning he's just fine. So we sent him to bed with a kiss and settled in for the night.
Shortly after midnight, Paulo woke me. Spencer had been with him, awake, for over an hour and he had bumps on the back of his neck. I checked, and sure enough he appeared to have some hives along his collar line. I slathered on some Benadryl cream, wondering if he was reacting to the laundry detergent, and went back to bed. Half an hour later he was no better, so we gave him some oral Benadryl and he finally passed out from fatigue.
In the morning, things got alarming. He hobbled downstairs, covered from head-to-toe in hives. He could barely walk, complaining that his knees really hurt, and they did appear swollen. He had no appetite and was miserable. Suspecting an allergic reaction to the antibiotic, I took his temperature and called the pediatrician.
A couple of hours later, after a thorough examination, we were told that he was having what they called a "serum sickness reaction." Later reading told me that when this type of reaction occurs to a medication as opposed to a vaccination they call it serum-sickness like reaction, but the results were the same. It was rare, they said, but not unheard of. Apparently, the autoimmune system turns on itself and sets off a cascade of symptoms throughout the body. Hives, joint pain, edema (swelling), nausea, diarrhea, and sometimes more serious complications such as encephalopathy (brain swelling) or renal failure (liver failure) have been known to occur. For now, we were to keep him on ibuprofen and Benadryl around the clock and alert them immediately if he began to have any GI symptoms such as vomiting, diarrhea or bloody urine or stools. Also, we were to return the next day to reassess, and these reactions tend to get worse before they get better and they wanted to keep a close eye on him.
So we carried him home. By this time, he couldn't walk for the pain in his knees and ankles. His ankles and feet were beginning to swell, and he itched everywhere. He was miserable and there was little we could do for him. We kept up the Benadryl and ibuprofen around the clock, waking him when necessary, but he continued to get worse. He needed to be carried anywhere he needed to go, and dressing him or putting him on the toilet were torturous because of the joint pain. His hands and feet were cartoons, so swollen and painful so that he couldn’t use them.
At night he couldn’t sleep for more than 45 minutes at a time, sometimes less as the pain in his hands and feet would seize him and he would stiffen, practically levitating off the bed in pain. The itching was so intense that it was painful, too, and he began sleeping with an ice pack so that we could ice the worst of itches on his hands and feet throughout the night.
As a parent it was torture, too. I spent a long time kneeling by his bed, soothing him, praying for him, keeping vigil because it was all I could do. I couldn’t make it better and I couldn’t tell him how long before he’d feel better, either. Even the doctors didn’t know how long it might take.
The next morning, we returned to the doctor. They took a urine sample and updated his condition in their records. That afternoon, they called me to inform me that while there was no blood in the sample (a good thing) there was sugar there and they wanted him to come in to give a second sample to confirm that it was appearing because of the extreme stress he was experiencing. They also wanted some blood work done.
The tests came back fairly normal. His inflammation numbers were high, obviously, but there wasn’t sugar present this time and no signs of other kidney or liver involvement. They had sent in a referral to an allergist (who called same-day to schedule an appointment), a referral to the osteopath to try to adjust him to clear the fluid from his ears, and recommended that we then follow up with an ENT (ear-nose-throat specialist).
But the suffering continued. The doctor’s office called and checked in once, sometimes twice a day. After 2 or 3 days he began to sleep longer stretches, but it was over a week before he could start walking some without pain, and the pain would continue to come in waves for the next 6 weeks. The hives, too, continued to come and go for several weeks, meaning that even when he was able to return to school he had to travel with ice packs.
Hives more than three weeks after the onset of the reaction.
Hives in the beginning of June. The bathroom lighting makes them a bit harder to see.
When it had been over a month, we got word back from the rheumatologist that his doctor had consulted. Because he had run a fever for several days, and because of the extreme swelling and joint pain, he wanted to test for Lyme, arthritis, and Kowasaki’s Disease, too. This news came on the heels of his appointment with the allergist, who had also taken blood to run tests because the hives would be took misleading for the skin scratch test, and had recommended that we enroll him in a sleep study to check for apnea. The blood test was to take place the next day, and then an echocardiogram was scheduled to check his heart for aneurysms to rule out Kowasaki’s Disease.
Needless to say, Spencer was less-than-thrilled at the idea of another blood test, but to his great credit, he managed it wonderfully. This time, Paulo was home and able to come with us and the two of them made a great team. In fact, Spencer was so proud of how well he’d done that he asked when he could have another blood test done because “I’m good at it, now!”
His inflammation numbers were still up but the blood tests showed no indication of Lyme or arthritis, thank God. And one week later the echocardiogram came back clean, too.
No one can tell us why this happened to Spencer, or how likely it might be for him to have this type of reaction to another known trigger such as the cephalosporin family of antibiotics, the tetanus vaccine, or rabies vaccine. No one could say whether this tendency runs in families and whether or not the girls might run a higher risk for this type of reaction in their lifetimes. No one could say whether or not people with other autoimmune issues, such as Celiac Disease, are more prone to atypical immune reactions like this. All they could tell me is that it is autoimmune in nature, very unusual, impossible to stop medically, and poorly understood by all. Great.
Needless to say, we’re playing it safe from here on out. Spencer’s sporting a fancy new Medic Alert bracelet and I’ve considered tattooing his arm with the words “If you touch me with penicillin my mother will kill you,” just to make sure no one screws up.
It’s June now, and he hasn’t complained of joint pain for over a week. He’s running and playing again, and only scratching mosquito bites instead of hives. It’s such a relief to have him back to his old self that I could cry. And finally, after months of waiting, he had the first of at least two evaluations for auditory processing done last week. The fluid levels in his ears, if still present, weren’t enough to interfere, and he did really well working with the doc throughout his evaluation. This was a baseline evaluation which told us little that we didn’t already know: namely that he’s bright, happy, squirmy, and that further evaluation of his working memory, language processing, and language organization needs to be done. They’re also sending me a detailed survey to fill out concerning distractibility, activity levels, and impulsivity. Next appointment will be next month, and I’m hoping that we’ll know more then.
My 18 month old son was just diagnosed with SSLR 2 days ago... we are on day 6 of symptoms. My best friend found your blog for me so I could possibly get in touch with you so I would have someone to talk to. I would love if you would consider emailing me, I'm feeling very very overwhelmed and helpless right now. Thank you!
Posted by: Krista | April 07, 2012 at 06:33 PM