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!)

Past, Present, Future...

If some one would have told me 3 weeks ago that I wouldn't be watching my son suffer anymore, I wouldn't have believed it. Brayden's spells started after birth, losing his breath each time he cried for a short period of time before starting to cry again. At 14 mos old he had a seizure and lost consciousness with the spell for the first time. Shortly after that he started having seizures without a proceeding spell. From that moment on our days were full of heartache as we watched our son suffer a condition even medical professionals didn't know much about. The continuing ER visits, doctor and specialist appointments and inconclusive testing as I fought to get my son the care and attention that he deserved from professionals who believed it was purely behavioral, led to me quitting my job to be there for him...a decision I will never regret.  I spent days and nights (sometimes to the wee hours of the morning) researching in hopes to find answers that were nowhere in sight.  Finally after pushing for so long to get the testing I requested from day one, we got an answer to the seizures that were not preceded by a BHS.  Brayden was put on a trial of Keppra which proved to be not much of a help, while causing side effects that were as hard to watch him suffer through as the conditions themselves. He lost his appetite, sometimes going a whole day without eating, he was spaced out, unresponsive to us, and suffered rage attacks. Doctors acted as if this was normal two year old behavior being mistaken for side effects and decided to increase his dose to the highest recommended for his age in hopes to stop the seizures.  That is when I put my foot down and decided to take matters into my own hands.

See, as a parent, watching your child suffer through a medical condition is hard enough, knowing that they are suffering for a decision made by you (putting him on the trial of Keppra), well that is the worst. I knew I had to do something, and with the help and support of a group of parents whose children suffer the same condition, it was possible.  In all my research, I never thought to look at the holistic approach to healing.  Having been going to school, and enrolled in the nursing program my efforts were to find the scientific answer to this problem. Now, I know there is another way, and there is no reason to ignore it, or pass up on the opportunity to help your child no matter how far "out of the box" it may be.  Thanks to essential oils, we are celebrating Brayden's 3rd week BHS and seizure free! This is a huge accomplishment since doctors tell you they will grow out of it between 6 & 8 and that there is no treatment.  Because of the oils I no longer have to watch my son suffer a condition that looks like death on a daily basis, I know longere sit by helpless as he seizes. I feel free, and hopeful for other parents that they will find these essential oils to use on their own children.

In the past month I have begun efforts to bring awareness to this condition. As a result of a meeting with my state rep, legislation is being introduced to observe July 14th as Involuntary Breath Holding Awareness Day, he is requesting the cooperation of CHOP (Children's Hospital of Philadelphia) to help find answers by furthering research and education on this topic.  A website is in the works to bring resources for parents, and accurate information to turn to so they won't have to feel the helplessness that current parents of children with this condition have.  I feel the future is bright for  this topic.  One day people will hear the term Breath Holding Spells and not hold us parent responsible for bad parenting and label our children as "willfully defiant".  

If you are a parent of a child who has been diagnosed with Breath Holding Spells, and are looking for ways to help them when medicine hasn't, follow this link http://mydoterra.com/lisacramer to order your oils. If you have questions on which oils to use and how to apply, feel free to ask! I am happy to spread the word on these oils so you can give your child the same relief I been able to provide for mine!  

See the difference for yourself...

Thank you for reading and for your continued support!

Talk About Irony...(and some extra news I'd like to share)!

Well as of yesterday, Thursday May 16, 2013, Brayden has gone 2 weeks with no spells or seizures!  This is very exciting news here!  So 2 weeks ago, we started using doTerra Essential Oils (http://www.mydoterra.com/lisacramer) on Brayden to try to "manage" his condition.  Having been through so much to try to find answers and help for him I was understandably skeptical that something so "outside the box" would work.  Two weeks later the only sign of this condition continuing to lurk is the fact that when he gets hurt, or upset he does lose his breath...but then he catches it again!  The loss of breath isn't even long enough for his face to change color.  It is amazing, I really don't know how else to describe it!  We use Frankincense on the bottom of his big toes, and Balance on the bottoms of his feet during the day.  In the evening we put Serenity on the back of his neck, and lavender on his temples.  What an unbelievable difference.  It's ironic that such a complicated condition would have such a simple management plan!  It's now hard to get used to the fact that he isn't going to lose consciousness or have a seizure! Each time I prepare for it, but nothing happens, its crazy.  Anyway, we are very thankful for this break through, and hopeful that these oils will continue to do the work that medicine couldn't!

And in other news...

As you may have already read, myself and another mommy of a breath holder began discussing starting an advocacy group to raise awareness for this condition.  On April 26, 2013 I met with my state rep to get advice on how to proceed with this idea.  Not only was he nice enough to give the advice I was searching for, but he went a step further to make this dream an even bigger reality!  State Rep Miccarelli is introducing legislation that will bring awareness of Involuntary Breath Holding to the forefront by recognizing July 14th as Involuntary Breath Holding Awareness Day! He wrote a letter to CHOP (Children's Hospital of Philadelphia) to get them involved as well!  The hope is that by bringing awareness, no other parent will have to leave a hospital with their child feeling completely lost and helpless.  I am very excited about this opportunity!  I began building a website, and designed awareness merchandise, with the help of another mom I created a survey for parents of breath holders to complete so I can be sure that the website is tailored to everyone's experience with this condition, and I petitioned the White House to bring awareness to this condition and push for further research, and for more education for medical professionals in regard to Involuntary Breath Holding Spells.  My dreams are big and my hopes are high for this project.  I hope our experience as parents of breath holders can help others feeling the isolation of this condition.  If you would like to get involved in these efforts please let me know! To show your support by signing the petition, please follow this link http://wh.gov/JnDU.

Thank you!

Hope for the hopeful?

We started using Essential Oils on Brayden to manage/treat his BHS on Thursday May 2, 2013.  We use Frankincense on the bottoms of his big toes, Balance (an oil blend) on the bottoms of his feet, and Serenity (an oil blend) on the back of his neck.  We apply these oils once a day in the morning.  We use lavender on his temples at night for a sound night sleep.  So here is this week's count...

                                     Night Episodes: 0

                                     Simple BHS: 0

                                     Severe BHS: 0

                                     Seizures: 0

I am hesitant to give credit to the oils due to having my hopes up and disappointment to follow shortly behind in the past, with this condition.  But I am enjoying the peace of this week and I hope and pray its the oils working, and that they continue to do so!

There is still work to be done.  Brayden is still a bit of a restless sleeper, and when he gets really upset he does lose his breath briefly (not even long enough to turn blue or purple), but he catches his breath and continues to breathe which is an incredible improvement!  We also need to work on fattening Brayden back up!  We just found out he is only in the 3rd percentile for weight, which I know is due to the Keppra.  This should be an easy task as his appetite has been getting better and better since coming off the Keppra.  

It wouldn't be right for me to end this blog update without giving the info and spreading the word on where to order these oils.  You can click on the following link or copy and paste it into your web browser:  http://www.mydoterra.com/lisacramer.  Lisa Cramer was incredibly helpful. She did not mind all of my questions on how and where to apply the oils, and trust me I had plenty!  When you are at a point where you aren't satisfied with the information and help your child is receiving this is an out of the ordinary, but very helpful place to turn. When you are getting nowhere, you have nothing to lose.  I am not the first person getting results from these oils either.  I recommend giving them a try.  One thing to remember is the world of medicine can not cross the world of natural healing.  So if your child is currently taking medicine and you are not getting results, speak to your medical professional to get information on how to take your child off of all medications before starting these oils.

If you have followed my blog from the beginning, or quickly read through it one night, you know the struggle we have been through in getting answers.  The roller coaster ride of hopes.  The emotional let down in experiencing not being able to help your own child.  Then you completely understand how thankful I am for the week we just had! 

Our week free of medicines...

Brayden was taken off all meds a week ago.  He has since had no interventions for his BHS or seizures.  During the past week he has suffered 6+ night episodes, 4 simple BHS, 9 severe BHS and 4 seizures.  The only changes in his level of activity come in the moments surrounding the severe BHS and the seizures.  He tends to be lethargic for a period of time after severe BHS and goes into a postictal phase of unwakeable sleep after seizures, which lasts for 3-4 hours.  So things are gradually getting worse, back to where we were when we started this journey.  Which I expected would happen.  Other than that he is the same great kid he always was without meds.  

I have the oils needed to start the holistic method of managing these episodes, however, I'm not sure if I want to wait until we come back from vacation on Sunday or bring them with us and start there.  Hmmmm...