As we dive in deeper and deeper in to Haven's world we are learning more and more about her conditions. I wanted to send all of you the best info I can. We are now working on the possibility that Haven could have Opsoclonus Myoclonus. Her condition is so indepth and out of the realm of just cancer (which is bad enough) that her doctors are researching constantly to find a way to treat her. One of their worries is that if they can't find a treatment the immune system could actually start attacking her other brain functions - as it has attack her sleeping, eating, bathroom, and weight functions. Now come the medical terms as I can't describe it that well:
This is a rare neurological disorder of unknown causes which appears to be the result of an autoimmune process involving the nervous system. It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year. It affects 2 to 3% of children with neuroblastoma.
Our doctors have only been able to find 10 cases in the world and one in the USA (Chicago)
Tumors in children who develop OMA tend to be more mature, showing favorable histology and absence of n-myc oncogene amplification than similar tumors in children without symptoms of OMA (Cooper et al., 2003). Involvement of local lymph nodes is common, but these children rarely have distant metastases and their prognosis, in terms of direct morbidity and mortality effects from the tumor, is excellent (Gesundheit et al., 2004). The three-year survival rate for children with non-metastatic neuroblastoma.
Haven had a more mature and favorable histology from her Neuroblastoma tumor - as to lead them to this possiblity.
One study came to the conclusion that: Patients with OMA and neuroblastoma have excellent survival but a high risk of neurologic sequelae. Favourable disease stage correlates with a higher risk for development of neurologic sequelae. The role of anti-neuronal antibodies in late sequelae of OMS needs further clarification.
There is no known definitive cure for OMS. However, several drugs have proven to be effective in its treatment.
Some of medication used to treat the symptoms are:
ACTH has shown improvements in symptoms but can result in an incomplete recovery with residual deficits.
Corticosteroids (such as prednisone or methylprednisolone) used at high dosages (500 mg - 2 g per day intravenously for a course of 3 to 5 days) can accelerate regression of symptoms. Subsequent very gradual tapering with pills generally follows. Most patients require high doses for months to years before tapering.
Intravenous Immunoglobulins (IVIg) are often used with varying results.
Several other immunosuppressive drugs, such as cyclophosphamide and azathioprine, may be helpful in some cases.
Chemotherapy for neuroblastoma may be effective, although data is contradictory and unconvincing at this point in time.
Rituximab has been used with encouraging results.
Other medications are used to treat symptoms without influencing the nature of the disease (symptomatic treatment):
Trazodone can be useful against irritability and sleep problems
Additional treatment options include plasmapheresis ("washing the blood", showing similarities to dialysis) for severe, steroid-unresponsive relapses.
Haven's doctors are giving her one more week to hopefully start fixing itself and then to decide how to treat but we have not noticed too many changes and it's been about a month.