Thursday, August 27, 2009

Trip to Boston to Help Shannon - OMS

The Quest for Answers

For my friends and followers, I promised to blog my way through the Boston Medical Trip. Here is a quick recap of why we are going to Boston.

Shannon was diagnosed with children's cancer and an rare autoimmune disorder called Opsoclonus Myoclonus Syndrome (OMS) at 11 mos. of age. 1 in 10m children are diagnosed with OMS every year. Not many children, right? So, part of our OMS Support Network on Yahoo is bring awareness to the medical field.

Shannon went into remission from the cancer/OMS around age 3. However, due to stress and anxiety, she came out of remission this past September, 2008. She came out of remission from the OMS. Here's the catch:

OMS causes injury to the cerebellum and brain stem as Shannon's autobodies - the cells in our body that fight infection - actually attack her brain. They do this because they were programmed to do this once they started attacking her cancerous tumor. The tumor, in theory, has the same tissue makeup and does the cerebellum/brainstem.

Her antibodies were "put to sleep" and made dormant by years of immunosuppressant therapy. They were always in her body but not actively causing harm.

At age 11, they woke up and started causing trouble again. We went back to our regular OMS specialist group and they helped us with treatment from November - April 2008.

They then refused further treatment based on "no objective data" existing in the DSM for our unique situation. This is an accurate statement but docs usually create the objective data themselves in order to help the child in need. Since that did not occur, we were not sure if Shannon really had active OMS. What to do?

Shannon's neurological symptoms from OMS returned as her last treatment wore off.

I then began video taping Shannon and creating the objective data needed to make our case to the medical field.

We were then granted an appt. with neuro- opthamologist who can diagnose OMS as active or not. This doc examined Shannon and diagnosed OMS is active.

So, that brings us to today - we set off for Boston in search of 2nd opinion. After Boston we still need to get to Illinois for the National OMS Specialist.

Here's the second catch - We can't accept medical intervention from any doc until we get to Illinois doc scheduled for 9/9/09. This is VERY difficult for any mom to deal with because its a huge risk.

The Illinois doc can perform a special test that will identify which of the antibodies are the culprits. The medical help for Shannon would then focus on killing off those specific antibodies.

Stay tuned.....

No comments: