strep stinks
So here we are, plugging along, wondering how parenting has ever been easier. We are on a "honeymoon;" after struggling with behaviors for so long, dealing with obsessive compulsive disorders (in the form of appsessions (apple product obsessions, iphone, ipad, etc), and having to handle constant meltdowns and tantrums, we had been so pleased with the level of progress. Hunter had turned a major corner...I'll get into the factors in a following post, and we were in heaven. We had done so many more things over the past month, taken family outings, gone to birthday parties, and experienced social success in various environments.
Until the stupid strep came back in the picture. We found out he was exposed at his Intensive Outpatient program on Monday. He had gotten the flu from the same group the month before, and I knew the chances of him escaping strep were minimal, since the group is small and they all work closely together. I took him to get swabbed Wednesday afternoon, as the infectious disease doctor had recommended any time he was exposed to strep. The rapid was negative...I had considered asking for a preventative antibiotic, but I decided to wait it out. Friday the nurse called and the grown culture was also negative. Hmmm...two-to-five day incubation period, I was wondering if we had swabbed too early.
Saturday arrives. We had great fun at the park, done a few activities, but something was different. The arms were flapping a bit more. The "Can I play with the ipad?" "Can I play with the phone?" started increasing. The meltdowns had returned. By Sunday, he was irritable and if I had to ignore one more question about the electronics I thought I would scream. We had been making such progress, and this weekend we were two steps back. I had to work Monday, but since the kids had off of school, Peter called and made the first available appointment that morning. Our regular doctors were not in, and the fill-in doctor examined Hunter, listened to his lungs, looked in his throat, and declared, "He has an upper respiratory infection," after Peter had told her he had PANDAS and was exposed to strep last week. "He doesn't present with any strep symptoms. He doesn't have a fever, his throat isn't red, he doesn't have spots on his throat or a rash, and he is eating and drinking just fine. Cough medicine should work for his cough." Peter repeated the case history for the doctor (who didn't seem to know what PANDAS was), and asked for a strep test. She told him she would be back after the six minute test, and she was back in two...with POSITIVE results.
It is so frustrating that medical professionals do not understand the diagnosis of PANDAS. It is alarming that so many have never heard of this disease. It is super, super stinky that if we were not the advocates like we are, Peter would have left that doctor's office with a strepped out kiddo who would never let anyone know.
Strep is a scary, scary illness that sneaks into unwanted places and in some cases, like ours, changes your brain forever. Hunter will never present like he has strep, because his poor little body is still harboring the initial strep insult at 17 months, evident on the titers that are collected every few months. This is the first time he has tested positive for strep since then, and let me tell you, it is apparent.
It may not seem obvious to a medical professional, even after a full, comprehensive physical exam. However, if you were to ask a parent of a PANDAS kiddo, we could rattle off a list of changes that let us know that our little boy is sick.
I am so ready for the medical community to recognize this disease and I am willing to educate anyone out there that PANDAS does truly exist. If there was ever a glimmer of a doubt that perhaps PANDAS wasn't truly what caused the changes in Hunter, those thoughts are completely gone. He is living, breathing proof of a strep infection gone bad.
A repeat infection that had no clinical symptoms; only the neuropsychiatric ones.
So, on the record, I state:
STREP STINKS.
www.youtube.com/watch?v=pbEM2OVM2kU - Cached.Play Video
Until the stupid strep came back in the picture. We found out he was exposed at his Intensive Outpatient program on Monday. He had gotten the flu from the same group the month before, and I knew the chances of him escaping strep were minimal, since the group is small and they all work closely together. I took him to get swabbed Wednesday afternoon, as the infectious disease doctor had recommended any time he was exposed to strep. The rapid was negative...I had considered asking for a preventative antibiotic, but I decided to wait it out. Friday the nurse called and the grown culture was also negative. Hmmm...two-to-five day incubation period, I was wondering if we had swabbed too early.
Saturday arrives. We had great fun at the park, done a few activities, but something was different. The arms were flapping a bit more. The "Can I play with the ipad?" "Can I play with the phone?" started increasing. The meltdowns had returned. By Sunday, he was irritable and if I had to ignore one more question about the electronics I thought I would scream. We had been making such progress, and this weekend we were two steps back. I had to work Monday, but since the kids had off of school, Peter called and made the first available appointment that morning. Our regular doctors were not in, and the fill-in doctor examined Hunter, listened to his lungs, looked in his throat, and declared, "He has an upper respiratory infection," after Peter had told her he had PANDAS and was exposed to strep last week. "He doesn't present with any strep symptoms. He doesn't have a fever, his throat isn't red, he doesn't have spots on his throat or a rash, and he is eating and drinking just fine. Cough medicine should work for his cough." Peter repeated the case history for the doctor (who didn't seem to know what PANDAS was), and asked for a strep test. She told him she would be back after the six minute test, and she was back in two...with POSITIVE results.
It is so frustrating that medical professionals do not understand the diagnosis of PANDAS. It is alarming that so many have never heard of this disease. It is super, super stinky that if we were not the advocates like we are, Peter would have left that doctor's office with a strepped out kiddo who would never let anyone know.
Strep is a scary, scary illness that sneaks into unwanted places and in some cases, like ours, changes your brain forever. Hunter will never present like he has strep, because his poor little body is still harboring the initial strep insult at 17 months, evident on the titers that are collected every few months. This is the first time he has tested positive for strep since then, and let me tell you, it is apparent.
It may not seem obvious to a medical professional, even after a full, comprehensive physical exam. However, if you were to ask a parent of a PANDAS kiddo, we could rattle off a list of changes that let us know that our little boy is sick.
I am so ready for the medical community to recognize this disease and I am willing to educate anyone out there that PANDAS does truly exist. If there was ever a glimmer of a doubt that perhaps PANDAS wasn't truly what caused the changes in Hunter, those thoughts are completely gone. He is living, breathing proof of a strep infection gone bad.
A repeat infection that had no clinical symptoms; only the neuropsychiatric ones.
So, on the record, I state:
STREP STINKS.
www.youtube.com/watch?v=pbEM2OVM2kU - Cached.Play Video
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