Appointment Update and Other Important News!

6/25/2013-Today we had a follow up appointment with Brayden's neurologist.  I have been all nerves about this appointment because I knew I needed to tell them that I took Brayden off his Keppra, which was something they did not suggest or advise me on.  I brought my notebook with all my notes from dose schedules, side effects, logged BHS, and seizures, the slow decreasing of his medicine, the week without medicine and the introduction of essential oils, and finally a log of every conversation I had with the doctor to back up my decision for taking Brayden off medicine. 

This appointment went better than expected.  Although I am hesitant to sing any praises, I feel having that notebook there was very helpful in proving that I am on top of my sons care and will continue to be, that I don't take anything lightly, but I make decisions based on facts.  

So here is the nitty gritty.  The doctor was fine with my decision to take Brayden off the medicine after listening to all of my reasons, the lack of appetite and extreme weight loss, his spaced out states, rage attacks, and continuing seizure and BHS activity.  I explained again how I differentiate a BHS from a seizure, and she feels I have a good handle on that.  I showed her the video, which she again showed a colleague.  She said that they agree that it looks like a seizure, but stated for the first time that it has characteristics of posturing disorder as well.  I mentioned the research I have done and the study I came across that linked these severe BHS with Autonomic Nervous System Disregulation and mentioned again that I was diagnosed with this during my second pregnancy, and although it was confirmed I wasn't having seizures, maybe it was presenting itself in a different way in Brayden.  She was impressed with this, and is going to do some more research in that area, to see how we can test Brayden. The doctor stated that there are seizures called Autonomic Seizures, which could explain his seizures, because they are focused in the Autonomic Nervous System. She asked if she could bring Brayden's case up tomorrow at their weekly neurology meeting stating that the department "guru" would be there, and asked if she could use the video as well.  My obvious answer was, OF COURSE!!  In the end, she prescribed Diastat to be used if Brayden's seizure's last 5 mins or longer, which we have been lucky so far.  She stated that depending on the outcome of the meeting tomorrow, Brayden may need to undergo more testing.  If the head Dr agrees that its seizures, we will need to do imaging tests, MRI & CAT Scans to see where the seizures are coming from.

So, like I said, I am satisfied...for now!

In Other News...

Legislation for Involuntary Breath Holding Awareness is currently in Harrisburg, circulating for cosponsorship! This is very big news! The goal is to have it voted on in July, which would make July 14th Involuntary Breath Holding Awareness Day!!!  Once this gets passed, it will go national! So now more than ever you need to make your voice heard and spread the importance regarding this legislation, not only to everyone you know, but to your respective state leaders as well!  Write or email them, tell them your personal story, and why this legislation is important to you.  So when that legislation makes it to their desk, they know to vote for it!!!

For more information on Breath Holding Spells, and updates on our awareness campaign, please visit www.bhsawareness.com.  Thank you for your support!