Inspiration

OMS (Opsoclonus Myoclonus) Syndrome


In January 2014 my son, Landon was diagnosed with Stage 1 Neuroblastoma which is a children’s cancer of the sympathetic nervous system along with OMS syndrome, the two go hand in hand.

Shortly before Landon turned two my husband and I began to notice he was becoming moody, withdrawn, and began having interrupted sleep. Then one day he woke up completely unable to walk, severe tremors in his hands and crying hysterically. It was very obvious something was very wrong with our son. After multiple CT scans, spinal taps, MRIs and blood draws, a small tumor was discovered on his right adrenal gland and he was diagnosed with Stage 1 Neuroblastoma and OMS Syndrome. Landon had a grape sized tumor removed in February along with his right adrenal gland. His tumor was isolated and he did not need any chemotherapy or radiation which we could not be more thankful for. Every month Landon takes a very high dosage of steroids to keep his symptoms at bay as well as IVIG(Intravenous immunoglobulin)every three months.

Opsolclonus Myoclonus syndrome 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. My son happened to be in that percentage. We are very blessed in the fact that Landon recieved a very early cancer diagnosis and we do not have to worry about that aspect of the illness, but there is no set treatment or cure for OMS and Landon may struggle with it for the rest of his life, relapse of symptoms is quite common.

I hope that I can help raise some kind of awareness for the extremely rare syndrome. It is certainly not easy watching my son go through this even though he is so brave and positive.

**UPDATE**- Landon is now six years old and thriving!!! He plays baseball, is in first grade at the same level as his peers and been off medication for two years now. When I started this blog he was still taking steroids but we were lucky to ween him off with no problems whatsoever. Landon still goes to the oncologist every six months for lab work just to monitor and be proactive, though he hasn’t shown symptoms of OMS for about 2 and a half years now which is so incredible!!  We are so thankful for our son’s perseverance and bravery throughout his journey, he is truly my lifelong hero.