Just When I Thought I Had My Fears In Check...

Well, I picked up Brayden's prescription for Diastat.  Just when I thought I had my fears in check, I leave the pharmacy with a Diastat kit that sent a chill up my spine! I pray every day that we remain as lucky as we have been, and Brayden doesn't ever experience a seizure that goes 5+ mins, because I am not sure I could hold it together to administer this prescription to my little man :(  In the interest of full disclosure, and because this is an informational blog, I have the Diastat (which is a suppository form of Valium) pictured below.

But first...

I received a call back from the neurologist in regards to Brayden's case which was going to be discussed during their morning meeting yesterday.  She stated that his EEG is going to be reviewed again by the physician that runs EEG Case Reviews and Dr. Bean.  However, at this time they do have a lot of cases to review, so it may be a while...Ugh!!! One thing I have learned from this experience is, you become an expert at playing the waiting game!  I'm not quite sure I'm there yet!!!

This is the Diastat Gel kit.  If Brayden's seizures ever last 5+ mins I have to administer this rectally to stop the seizure.  This is very scary to me!

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!

The Best is Yet to Come!

Or at least, that's what it feels like!  I'm starting to wonder if this blog will go on much longer!  This blog began with the diagnosis of Breath Holding Spells for my son.  It has been a wild and crazy journey, with ups and downs, hopes and heartache.  I started this blog because when I began my research of breath holding spells, I wasn't finding what I was looking for.  I saw clinical explanations (or as I like to call them, clinical opinions) of what breath holding spells were.  I could see from watching my son go through it that it was much more than what their opinions suggested.  What I couldn't find, was a parent's account of this condition.  Something to relate to.  I wanted to put something out there that detailed the struggle and the reality of this condition, that proved that this is not my son being "defiant", as doctors will tell you.  

And so, with us celebrating our 4th week free of seizures, and severe breath holding spells (thanks to doTerra Essential Oils*), I would like to announce, that this blog will go on!  I will no longer report weekly on Brayden's progress.  Progress updates will be given on a bi-monthly/monthly basis, along with appointment updates.  This blog, however, will go on to continue to bring awareness to the condition and how families, live with, and handle it.  I will report on the progress of our awareness campaign, to spread awarenss, and find answers to this complex and confusing condition.  I would like this blog to go on to serve as a resource for other parents who are beginning their journey or continuing their journey with breath holding spells.

As confusing as this condition is, so our my emotions right now.  This blog not only served as an informational resource, but as place for me to sound off, vent, and let go of emotions.  Breath Holding Spells became such a big part of our life, an every day, several times a day occurrence, that it seems strangely vacant, quiet without them.  This piece of us, that became who we are and how we live, is no longer with us. Not that I would ever want to see it again, but it is weird without it.  Going through your day expecting something that was once a normal part of your day, and getting through it without it, is a strange new world for us.  I don't know if anyone else has ever felt this way about something like this.  It's hard to actually put into words without it sounding like I miss this ugly monster that took control of my son, made him suffer, and caused us heartache.  But I can tell you one thing, it is nice to not have to worry, to be able to breathe again!

As Frank Sinatra once sang "The best is yet to come, and won't it be fine".

As always, thank you for reading, and for the support! Please check out these links to help spread awareness!

http://bhsawareness.webs.com (Breath Holding Spell Awareness website, I launched 5/31/13)

http://wh.gov/JnDU (We are petitioning the White House to bring awareness to BHS! Please take a moment to sign our petition! Thank you!)

* http://mydoterra.com/lisacramer (Follow this link to order essential oils to relieve the symptoms of BHS for your child!)