I guess I should do a little intro before I start, I'm Jenny, my hubby is Alex & we've got two fabulous daughters, Hannah who's 3 & Bailey who's 16 1/2 months old. I stay home with the girls while Alex teaches school during the day & music lessons at night, as well as plays with several local bands in his spare time. The girls were both born at home & we do as much the "natural, crunchy" way as possible.
Looking back, everything started on August 23 when she got her vaccines - HIB & Pneumococcal. On September 3, my Mom came to watch the girls so Alex & I could run some errands & she noticed Bailey stumbling around. I didn't think anything of it, I just figured she was sleepy. I didn't notice it being a problem until about Sept 5 & I continued to notice it over the next few days. In addition to the stumbling, on Sept 7 & 8 I noticed as she was going to sleep that her eyes were jumping. She hadn't been sleeping well, which I contributed to the fact that she had 3 teeth coming in (I would later find out that even the restlessness at night is a sign of OMS). It wasn't until Sunday Sept 9 that these things started sending up red flags because I started to notice them as more than isolated incidents. We took her to the ER that day & they did a CT scan of her brain & said it was normal, but showed a slight inflammation of her cerebellum - diagnosed as cerebellitis or possibly labyrinthitis. We were released with a follow up appointment scheduled with our pediatrician for the next day. We met with him & he said the neurologist that read her scan had diagnosed it as cerebellitis & just to watch her & it would get better & to call if it didn't. The next 2 days she got worse, she was more shaky, she started loosing the ability to walk & sit & her eyes got much more jumpy. I called her pediatrician, who called the neurologist & he said that cerebellitis could take up to 8 weeks to go away & not to worry. The rest of the week she continued to get even worse. The local pediatric neurologist office couldn't get us in until December 19, so I called the pediatricians office & asked to be referred to Children's in Birmingham (1st appt April 19) or Vanderbilt in Nashville (1st appt December 3). Since those were still so far off, the pediatrician ordered a MRI of her brain for Monday September 24 to confirm that it was cerebellitis, so we didn't wait 8 weeks only to find it hadn't gone away. The MRI came back normal so I got really worried but our pediatrician kept saying that it was probably normal & we were back to just waiting. It just so happens that a very close friend of ours (aka our angel) works at the hospital & she saw one of the neurologists one day & asked her what we should do since we couldn't get in anywhere. The neurologist looked at our scans & ordered an abdominal ultrasound for this past Monday (October 1), followed immediately by an appointment at St Jude's. Once we got to St Jude's, they told us that the ultrasound showed a tumor on her right adrenal gland & that her immune system was fighting her brain because of it, causing the opsoclonus myoclonus. We were immediately scheduled for a CT scan of her abdomen, chest & pelvis for later that same day & also for emergency surgery Tuesday morning to remove the neuroblastoma. The CT scan showed that it was just a mass on the adrenal gland & hadn't spread anywhere else. They removed the neuroblastoma (larger than a tennis ball) Tuesday morning, along with several lymph nodes & also did a bone marrow biopsy from both of her hips. She stayed in the PICU until Wednesday afternoon when they moved us to a regular room. Thursday they ordered a bone scan that came back normal. The pathology from Huntsville Hospital came back saying that the tumor was a neuro neoplasm, consistent with neuroblastoma & it was 4.5 cm & malignant, but the lymph nodes were benign. The bone marrow also came back normal. All we're waiting on now is the pathology report from St Jude's to confirm what Huntsville Hospital found & also to stage us. We were discharged on Thurs October 4, so we are home, at least for the time being. Now that we're mostly past that terrifying hurdle, now we face the OMS!
Looking back, everything started on August 23 when she got her vaccines - HIB & Pneumococcal. On September 3, my Mom came to watch the girls so Alex & I could run some errands & she noticed Bailey stumbling around. I didn't think anything of it, I just figured she was sleepy. I didn't notice it being a problem until about Sept 5 & I continued to notice it over the next few days. In addition to the stumbling, on Sept 7 & 8 I noticed as she was going to sleep that her eyes were jumping. She hadn't been sleeping well, which I contributed to the fact that she had 3 teeth coming in (I would later find out that even the restlessness at night is a sign of OMS). It wasn't until Sunday Sept 9 that these things started sending up red flags because I started to notice them as more than isolated incidents. We took her to the ER that day & they did a CT scan of her brain & said it was normal, but showed a slight inflammation of her cerebellum - diagnosed as cerebellitis or possibly labyrinthitis. We were released with a follow up appointment scheduled with our pediatrician for the next day. We met with him & he said the neurologist that read her scan had diagnosed it as cerebellitis & just to watch her & it would get better & to call if it didn't. The next 2 days she got worse, she was more shaky, she started loosing the ability to walk & sit & her eyes got much more jumpy. I called her pediatrician, who called the neurologist & he said that cerebellitis could take up to 8 weeks to go away & not to worry. The rest of the week she continued to get even worse. The local pediatric neurologist office couldn't get us in until December 19, so I called the pediatricians office & asked to be referred to Children's in Birmingham (1st appt April 19) or Vanderbilt in Nashville (1st appt December 3). Since those were still so far off, the pediatrician ordered a MRI of her brain for Monday September 24 to confirm that it was cerebellitis, so we didn't wait 8 weeks only to find it hadn't gone away. The MRI came back normal so I got really worried but our pediatrician kept saying that it was probably normal & we were back to just waiting. It just so happens that a very close friend of ours (aka our angel) works at the hospital & she saw one of the neurologists one day & asked her what we should do since we couldn't get in anywhere. The neurologist looked at our scans & ordered an abdominal ultrasound for this past Monday (October 1), followed immediately by an appointment at St Jude's. Once we got to St Jude's, they told us that the ultrasound showed a tumor on her right adrenal gland & that her immune system was fighting her brain because of it, causing the opsoclonus myoclonus. We were immediately scheduled for a CT scan of her abdomen, chest & pelvis for later that same day & also for emergency surgery Tuesday morning to remove the neuroblastoma. The CT scan showed that it was just a mass on the adrenal gland & hadn't spread anywhere else. They removed the neuroblastoma (larger than a tennis ball) Tuesday morning, along with several lymph nodes & also did a bone marrow biopsy from both of her hips. She stayed in the PICU until Wednesday afternoon when they moved us to a regular room. Thursday they ordered a bone scan that came back normal. The pathology from Huntsville Hospital came back saying that the tumor was a neuro neoplasm, consistent with neuroblastoma & it was 4.5 cm & malignant, but the lymph nodes were benign. The bone marrow also came back normal. All we're waiting on now is the pathology report from St Jude's to confirm what Huntsville Hospital found & also to stage us. We were discharged on Thurs October 4, so we are home, at least for the time being. Now that we're mostly past that terrifying hurdle, now we face the OMS!
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