The Search for an Answer

Anyone who has been following this blog knows that since day one (September 14, 2011) I have been on a mad search for answers for Brayden.  Sleepless nights, all nighters, and a ton of research later, we have something!  It seems unnatural to say I am happy about this, after all, no parent wants to see their child suffer.  So why do I feel relief?  Why do I feel positive?  I guess, in part, because knowing exactly what you're dealing with helps you to plan, to prepare yourself, and move forward.  I know longer have to wonder about what might happen.  

Brayden's case was put into EEG Review at the end of June 2013.  I was told then, that they were pretty backed up, so I have remained patient in waiting for the call.  Well, I received that call today!  Brayden's EEG was reviewed during yesterdays meeting which involved the entire Neurology Dept at Alfred I Dupont Hospital for Children.  Included in this group was what Brayden's neuro refers to as the house "guru" in the area of seizures.  The outcome is this.  Brayden is having seizures, based on epileptiform waves found within his EEG, and the video I provided of Brayden's episodes.  The doctor is strongly recommending Depacote for treatment, which I am completely against after reading about the side effects, and finding out there is litigation in review of this drug.  I let his neuro know that as of right now he is averaging 1 seizure a month with just the use of essential oils and melatonin.  My plan is to keep going with our current management methods.  Should his seizures become more severe in length and/or frequency, I will consider this other option.  In the meantime, I have the Diastat for any seizures that last 5+ mins.  I asked his neuro if this was a form of seizures he would grow out.  She is hesitant to make assumptions at this point as they didn't catch a seizure on the EEG.  However, she did state that in her experience, children who develop seizures at a young age like this, tend to grow out of them.  But she also said there are cases where they don't.  The important thing is we have to keep an eye on it.  Neurology is a very gray area of medicine, it's almost like you can never be certain of what you're dealing with, or what the outcome will be.

I am satisfied with this information.  After all that is what I wanted, information.  I wasn't surprised by the outcome, in my heart I always knew he was having seizures, I just needed to find a way to get them to see it.  Now that I have this info, and a means to manage it, I can move forward.  My last order of business is to find out if his BHS are a result of Autonomic Nervous System Dysregulation.  This, I feel is going to be a much bigger task! Doctors are so set on the fact that they are benign, that they are less willing to do the work to find answers! But I am not ready to give up on that one!

Thanks for the continued support! Please check out the following resources...

htt://www.BHSAwareness.com

On Facebook? Join the group "Parents of Breath Holders" to find the support you and your family are looking for!

You Win Some You Lose Some...(July Post, somehow it didn't publish)

Well, it has been about 2 months since we started the Essential Oils.  The oils have been a fantastic way of managing Brayden's spells and cutting his recovery time in half...if not more! We have seen BHS, some severe, some simple, and he has had 2 seizures in that time.  This is a huge improvement from our pre-essential oils days!  I admit, it is still the hardest thing in the world to watch this happen to my little boy, especially knowing that nothing I do, can stop it!  Each time it happens, I am brought back to that first time, when I held his lifeless body in my arms, it's completely heart breaking.  However, I also know how lucky I am.  I know that there are parent's out there who are still trying to find ways to help their children and cope with these spells.  My only advice is to try the oils.  When you have nothing, you have nothing to lose!

It's All Politics...

About a week ago, I emailed my state reps office to see if any progress has been made in getting our legislation passed.  I heard back yesterday.  Unfortunately, there has not been a vote yet.  After the House passed the budget they went on a break.  So we now have to wait until they get back to business.  My rep contacted the House secretary to have me CC'd in all the emails that they send in regards to these updates.  As I get them I will forward the information to you!  Hopefully we are not waiting too much longer, but as I'm sure you can imagine, these things do take time.

If you are looking for ways to help with the BHS Awareness campaign, and you haven't done so already, I urge you to contact your local elected officials.  Tell them your story and explain why this legislation is so important to you.  I'm sure in your BHS journey, you have noticed how little is known about this condition.  It's hard to find some one who truly knows what it is and what this condition does to our kids.  So, if you put yourself in the shoes of those who will be voting, they may not understand the importance of bringing awareness to BHS.  It is our job as parents, as advocates, the voice of our children to make it important to those who hold the power.  It only takes a few minutes to type up a letter, and make your voice heard!  We owe this to our children, after all they go through as we search for answers for them!

Thank you for your continued support! 

Resources:

http://www.BHSAwareness.com

On Facebook?  Join Parents of Breath Holders and connect with other parents on the same journey! The support and understanding you will receive from this group is incredible!

Time Heals All Wounds...or does it?

I just realized how long it has been since I last updated this blog, and I apologize to anyone who has been following this blog, or looking to it for information, support or understanding.  I can blame it on the fact that it's summer vacation, but I know that is not good enough. BHS does not take a break, worrying about your child does not take a break, and neither should I! I started this blog to put more accurate information out there about BHS, by detailing our daily struggles, and successes, and I will continue this cause so no other parent has to suffer the feelings of helplessness that I had to when our journey began..  So here we go!

I last left you with the information that Brayden's case was being reviewed by a team of neurology specialists.  I have not heard back from his neurologist at this time.  As you probably guessed, I am trying to be patient and failing, lol.  DuPont Neurology will be receiving my call first thing Monday morning!  

In the world of politics, legislature to bring awareness to BHS was introduced in Harrisburg in June, and the goal was to have it voted on in July.  I have yet to hear an update on this.  I emailed my reps office a week ago, and still have not heard anything! The waiting game is sooooo frustrating!! Especially for an impatient person like myself! I am trying to remain patient, as I know, my state rep is continuing his training for the Army right now.  However, I will be emailing his assistant, and will forward info as soon as I have it!.

Brayden is doing very well actually! The only success I have to report out of the 3 goals I am trying to accomplish! lol.  In the past 3 months he has only had 2 seizures! He continues to suffer from BHS, but of the mild variety.  His BHS are still caused mainly by upset or injury, they are still Cyanotic.  His heart stops, he turns blue, but after he is blue for a bit, he starts breathing again.  In the past 3 months, he has not lost consciousness or had a seizure as a result of BHS.  This is a HUGE accomplishment, and a HUGE relief for me! 

Brayden just turned 3, so I am considering taking him off the oils and the melatonin (which I use to help him sleep at night).  I read that individuals who suffer from seizures, have a susceptibility to seizures when they are exhausted, which is why I started Brayden on melatonin (1ml 30mins prior to bedtime).  This "test" scares me, but I know I can't keep him on the oils and supplements forever.  I know I have to experiment with no "alternative treatments" to see if its Brayden "growing out of" this condition, or if its the supplements giving us all our successes and milestones.  I pray its the latter! 

Brayden is very slowly gaining weight back since being off Keppra.  Since his last appt 3 months ago, he has gained 1lb!  Although small, we celebrate all our accomplishments and milestones!  Brayden is a good eater in that he is not picky, like his older brothers, however, at this age, he much rather be running around than eating.  So the weight gain will come in time!  And I am so excited that he is interested in running around again after seeing him so spaced out and unresponsive due to the Keppra.

Brayden at his Dr appt 8/1/2013 (Dr Rollnik)

So, as you can see there is a lot going on right now.  But BHS does not stop so life can continue.  Quite the contrary actually! Life continues despite BHS and all it's "heart stopping" moments!  My oldest will be starting 5th grade in a month, which is soooo unbelievable to me! Ryan, my second son will be starting PreK in a month! Brayden, although he will not be starting formal school, is so smart! He does addition in his head! He knows all his shapes, colors, numbers and letters!  He is athletically inclined, energetic, smart, funny, and oh so loving!  I am so lucky!  On top of all this we are planning a rather big move!

Over the past few months, of starting the BHS Awareness campaign and website, I worried that despite these small efforts, they would not reach those that needed the support most.  Remembering Brayden's first severe BHS and our first trip to the ER, after experiencing what felt like the death of my son in my arms, I was so upset that, parents like myself, wouldn't find our resources.  I will never ever forget what it felt like to hold my son, limp in my arms for the first time, sit in the ER waiting for the first time, experience the ignorance of BHS by the medical professionals for the first time, leave the hospital not knowing what to do next for the first time.  That feeling of helplessness is the worst by far.  I am so used to being able to kiss my children's boo-boo's away, but this is one boo-boo I can't kiss away.  This is a boo-boo, that may potentially (depending on the outcome of his case review) be there for the rest of his life! How do I deal with that, continue to move forward, make him feel like his potential is limitless?  Of all the moments us as parents wish we could put our children in bubbles to live out the rest of their life in complete safety...this is #1!  

I am asking everyone who reads this update to close their eyes, and think of their first experience with BHS.  Think of that moment with their child, think of that first moment with doctors, think of that moment when you try to figure out what to do next, and how to move forward.  Remember your feelings of loss, of fear, of anger, of despair.  Lets take a moment and make an effort to help others through this time.  Lets take a moment to reflect, and be thankful that we got as far as we did.  Now, lets take that moment and use it to help others!  Lets do what we can, so the next parent that leaves the ER with their child and this diagnosis, doesn't have to go through the same emotional roller coaster we did.  I ask every one of you to please, post the link to this blog or the website www.bhsawareness.com to your facebook, twitter, linkedin, instagram, Google+.  Email friends, family, loved ones, co-workers.  Give them the advantage, we all wish we had when we first experienced BHS.

Thank you for your continued support and patronage!

If your child was diagnosed with BHS, please look to the following links for information and support!

www.bhsawareness.com

On Facebook? join the group "Parents of Breath Holders".