Thursday afternoon, Dr Leber and a scaled down group came by our room to let us know that the results of the MIBG were (as we expected) negative for any evidence of neuroblastoma. However, they had concluded that, while idiopathic in nature (meaning without known cause), Oliver was experiencing all the symptoms of OMS: opsocolnus- myocolnus syndrome. They actually said OMA (the A being ataxia, our specialist in IL said if every symptom got a letter tacked on, the syndrome would be as long as the alphabet). We all took a deep breath and waited for the rest. Dr Leber proceed to elaborate on all the possible long term impacts of untreated OMS. The list is long and not pretty, but we do not believe Oliver will experience this "worst case scenario" so I will spare you the details. You can do a Google search if you care to know.
Quite honestly, the thing that rattled me the most that day was the recommendation for high-dose steroid treatment (ACTH, in actuality). The side effects of this treatment would be diverse and nasty. I could only relate on a small scale from my fight to taper off prednisone which is being used to treat my own autoimmune disease. I think that was one of the first and only times I really cried. I know what it can be like to deal with drug that causes almost as many things as it fixes. Not to mention the fact that for Oliver it would mean inter-muscular injections (IM) as often as twice a day, tapering to every other day for 6 months, minimum. Dr Leber's other suggestion was visiting a neurologist in Springfield, IL who specializes in OMS diagnosis, research and treatment- Dr Pranzentelli. The one thing he did not recommend was doing nothing.
Upon hearing the options, and having watched Oliver decline for a week while we were at the hospital, we decided to go home and re-group. We wanted to pray, consider and see Oliver in his native environment to see if he would improve on his own without the doctors and procedures. We gave Dr Leber the go-ahead to call Dr P. to see how quickly we could get an appointment for a consultation and a second opinion.
And so, we headed home...
No comments:
Post a Comment