Involuntary Breath Holding Spells Awareness

When my son was first diagnosed with Involuntary BHS in 2011, I left the emergency room with him, not knowing what to expect next. The treatment we received first by our pediatrician and later that day by the ER doctor was lacking, to say the least. In the days, months, and years that followed Brayden's Involuntary BHS evolved in so many ways. I learned quickly that the information the doctors gave was not fitting for what my son was going through. I felt isolated, and afraid. No one seemed to have ever heard of this condition, and the ones who thought they knew, were so very wrong. I finally switched pediatricians and Brayden ended up going through testing, and a trial of medicine. His final diagnosis is Complex Severe Involuntary Breath Holding Spells. It took us 1 year to find doctors willing to listen, and work with us. It took 2 1/2 years to come up with a diagnosis that is still so widely misunderstood. Beginning in 2013 I started taking steps to bring a bigger awareness to this condition. To educate the general public, and create an understanding of this condition. I met with my state rep in April 2013, and in June 2013 legislation was introduced in Harrisburg to recognize July 14th as Involuntary Breath Holding Spells Awareness Day. In September 2013, this legislation passed with a unanimous vote!! This legislation is now circulating through congress to generate support and bring our awareness campaign to a national level!!

I am not done yet!! My future goals include, accurate information pamphlets on Involuntary BHS for pediatricians offices and ER's, organized walks, working with medical schools to spend more time with up and coming medical professionals on materials and training on Involuntary Breath Holding Spells. I hope you will support this mission, and get involved with the cause. Parents need our support, and our children deserve a voice!!