Jan 14, 2021 Latest post:
17 hours ago
Sydney has been diagnosed with Craniocervical Instability (CCI). She has been bedridden for the last 3 months and lost the ability to walk or hold up her head about 5 weeks ago. It has been a tough road. Since September, she has been in and out of the hospital 5 times.
Here is a brief account of Sydney's story, although she is the only person who truly knows the depth of her journey.
In March of 2020, Sydney was sick, experiencing COVID/flu like symptoms. After about two weeks, she healed, but was left with a dull headache. The pain was tolerable so she continued her activities, but as the weeks continued, the pain level of the headaches increased and began a consistent migraine. We saw the pediatrician and ophthalmologist to rule out likely causes. In June, mild dizziness occurred and July brought light/noise sensitivity and the need for daily naps.
Sadly, everything elevated in August. She was waking up in the middle of the night with extreme headaches, felt overheated, and could not return back to sleep. Ice packs on her forehead brought some relief, so we started wearing ice caps and placing bags of pebble ice on her head and neck hourly.
Towards the end of August, she began vomiting after she ate, as she had constant vertigo and nausea. She became very sensitive to sound, heard a constant ringing and had pressure between her ears. Light became unbearable at this point, leading her to seek rooms in our home without windows to take refuge. She switched bedrooms with her brothers and we blacked out the windows to keep out light. The neurologist diagnosed her with Chronic Daily Headaches and then switched the diagnosis to Vestibular Migraines, but we knew it was much more than this.
We formally withdrew Sydney from Bishop England in September, as she was no longer able to see to look at a computer screen; her vision was fuzzy, distorted, and she often saw double. She spent her days in bed with extreme vertigo and wasn't able to consistently hold down food. She began to lose weight and muscle tone. The pain became tough to manage at home (even with toroidal and oxycodone) and she was admitted to MUSC Children's Hospital for 4 days at the end of September. A bevy of tests were run, including MRI, MRI w/ contrast, MRV, MRA, EEG, EKC, etc.
At this point we scheduled several appointments - more neurologists with major institutions, neurological immunologists, ENT, cardiologists, homeopathic routes-Deeper Healing, immunological allergist, dry needling, seeing every specialty possible. Her pain rose and so did our concern.
Her grandmother/my mother "Millie" moved in with the family mid October and slept in the bed next to her to help change out the ice packs on her head (about ever 90 minutes). Millie's commitment to Sydney and dedication to our family has been unwavering, and still is to this day, as she has been living with us and caring for Sydney since October. Matt and I could not imagine what our lives would be like without her help. Her love is shown every hour of every day and words cannot express our gratitude.
Towards the end of October she had an infection in her mouth that we believed was caused from her wisdom teeth. She was put on a big-gun antibiotic, clindamycin for 20 days and had her wisdom teeth removed. Although the odds were low, the hope was that this infection was perhaps causing these neurological issues. She returned to MUSC Children's Hospital shortly after the surgery due to uncontrollable head pain and put on a morphine drip.
November brought us some answers. Although I had never been to a chiropractor prior to this, an upper cervical chiropractor was recommended. We were desperate for answers. Her cervical x-rays revealed terrible C1/C2 misalignment (the doctor said it was worse than her trauma patients). We had a manipulation done and she instantly felt better. We felt relief and joy for the first time in a long time. Within five hours, Sydney was in extreme pain in her entire body. She went from having 5 main symptoms to about 25 symptoms, including the inability to regulate her temperature and tingling/numb extremities. She was so hot and requested the room temperature lower and ice packs to put on her head/face/body, yet her body was freezing.
Matt reached out to Dr. Patel, the Chair of Neurosurgery at MUSC. His x-rays also revealed she may suffer hypermobile joint with craniocervical instability and brain stem kinking/compression. He recommended Sydney have an upright MRI of neck so that we could see what her cervicalspine was doing with the weight of her head. The only upright MRI in South Carolina was in Greenville. Through the help of a wonderful and generous friend, we were able to fly her there privately.
Dr. Patel confirmed she had CCI. The March virus, hormone changes, etc. had weakened her ligaments. Upon Dr. Patel's recommendation, she was put in a Aspen cervical color and begin physical therapy with the hope of strengthening her ligaments. We explored prolotherapy and stem-cell therapy. Dr. Patel was wonderful, empathic and kind. He spoke of the fusion surgical option, but encouraged us to be patient to see if she could heal through other options.
Sydney was again hospitalized for three days for her pain. Towards the end of November, we sent her three siblings to Florida for 10 days to be with their grandparents to allow us to focus on Sydney and to make sure no rock was unturned.
For completeness, we sought more options, ran more tests, but nothing new surfaced. She continued physical therapy with Susan on Daniel Island, who was very kind and understanding, as she also suffered from something similar years prior.
Unfortunately, in December, Sydney lost the ability to walk. Leaving for the house to PT or doctor appointments was such an effort for Sydney and left her in such a bad place where it was nearly impossible to control her pain upon our return. Our medical team thought we should put a hold on physical therapy and appointments, as transportation(even in a wheelchair) became unbearable.
After Christmas she was hospitalized and rang in the New Year at MUSC Children's Hospital again for pain control. She said when the neck pain was bad, it was like someone had two fingers pressed on her throat and it was sometimes difficult to swallow. Morphine and oxycodone only took away the edge, but not the pain. In the hospital, she was put her under general anesthesia and intubated for five fours to do a repeat brain, cerebral, thoracic and lumbar spine MRI with contrast and CT scan of her moving her head rotationally just to make sure we weren't missing anything.
Dr. Patel of MUSC, who originally diagnosed Sydney, will be operating on Sydney Thursday, January 14th at 7:30am at MUSC University Hospital. She will have a skull to C3 fusion and her skull shaved (as her cerebral tonsils have lowered slightly). We will provide updates on this page as we go.
Thank you for your support, prayers, and encouragement to Sydney and our family. We are overwhelmed by the outpouring of love and feel blessed to have such wonderful support. Please feel free to share this page with friends and family.