Awareness News!!

Things are moving along in growing Involuntary Breath Holding Spells Awareness!  On Monday March 17th 2014 I submitted the paperwork to my State Rep's office to register as an official nonprofit organization!! This is very exciting for me! Making this official is a big step as we move forward in gaining national awareness! According to the paperwork it takes 10-14 days for this to be completed, so I am counting down!! 

Our first fundraiser was a huge success!  The awareness t-shirts look awesome, and as you can see from the picture above, they look great on our kids! Wearing this shirt is a great way to show your support and spread awareness of this involuntary medical condition. If you were not able to purchase a shirt during this fundraiser, I will be running the booster again in the summer!

I hope those who found this blog from the beginning are still following us today.  Our format has changed a bit, as Brayden's condition has improved, and so the focus has turned to more of an awareness forum.  However, I am always available to talk to anyone looking for support while they are living with this condition.  In fact, I added a "contact" form to the right side of the blog that I hope you use if you need support.  If you are new to this blog, feel free to read through from the beginning, as I am sure you will find a little bit you in my blog!! 

Thank you for supporting and following along on our journey with Involuntary BHS! If you would like to get involved in efforts to spread awareness please use the contact form on the right.

A Little Bit of Everything...Updates, News, and Venting!

Since I last posted, a lot has happened!  We switched Nuerologists as well as Hospitals for Brayden's care.  He is now seen by Dr. Taub at Children's Hospital of Philadelphia (CHOP).  She is a great doctor, has a lot of knowledge, and shares it all with you.  Which is great!! Brayden had another 24 hr VEEG which he did great with!  It was a little tougher now that he is older, he kept saying he wanted to go home, but in the end, he is as tough as ever and such a trooper!! The results were normal! No signs of seizure activity, or a predisposition to a seizure disorder.  Which means the seizures he has are completely BHS related.  This is good news, because my big concern was that he might have epilepsy.  His diagnosis is, Complex Severe Involuntary BHS.  I was expecting this, so no real shock.  Since I last posted, I feel like we may be heading to the other side of BHS.  His spells are not as frequent as they used to be, especially the severe ones.  The simple spells, still happen quite often, and the downside to this is, now that he is older, he is at an understanding age.  He knows he can't breathe, he struggles harder to get a breath out, which in turn causes the spell to get worse.  He tries to communicate but is unable to since he can't breathe.  Seeing him like this, fight so hard against this monster, and struggle, is more heartbreaking than I can express.  I always prayed since first diagnosis, that he would outgrow this before he was old enough to remember, or understand.  However, this is where our journey has brought us, and I can only assume that there is a reason.  This whole experience continues to make me stronger as a person, and especially as a parent.  

Awareness News!! A lot of exciting things are happening in BHS Awareness!  Congressman Patrick Meehan, introduced the legislation for Involuntary Breath Holding Spells Awareness to the Speaker on January 27, 2014, pledging his support of our cause!! On February 10, 2014 I had a phone meeting with Congressman Meehan's assistant to discuss the work I've done, and my future goals for awareness!! He let me know that Congressman Meehan would like to know when I schedule events so he can participate!! On February 12, 2014, I met with my State Rep.'s assistant to go over the steps to make Involuntary Breath Holding Spells Awareness an official charity!!  We will soon be registered with the state of PA, and shortly after nationally registered! We have an EIN, and will be incorporated!! I hope this helps everyone feel comfortable with working with me, know that my motives and my interests in this cause are pure!!

Please check out the following links

www.BHSAwareness.com

www.facebook.com/BHSAwareness

www.booster.com/BHSAwareness

@BHSAwareness714 on twitter

Thank you!

So Many Updates!!!

Well, it has been some time since I last posted.  I have so much exciting news to report, but first I will update you on Brayden.

We had a rough start in October.  Brayden had 2 severe breath holding spells, and 2 seizures within a 5 day period.  It has been a while since we have seen this much activity in such a short period of time.  The first seizure he had was different from the tonic seizures I'm used to seeing.  With this seizure, it was like he had no energy or muscle tone.  He was laying limp on the floor but his body was twitching very slightly.  I tried calling his name a few times and he finally turned his head towards me and said "what", so I asked him if he was ok but he just turned his head back to its side and the jerks started again.  He was not with it at all, not even when he was responding to me, even though he was looking at me, his eyes were blank and his eyelids were half closed.  This is obviously something you would want to record to show a neurologist, but of course my battery was dead because we had just come in from being out all day for a nature walk for school.  It makes me nervous about his condition that changes are happening, I wonder if this is an indicator that he will not outgrow this seizure disorder.  It adds, like, a million more questions to the list of unanswered questions I have.  Also, I have been noticing what I think are seizures in the middle of the night...actually I'm pretty certain they are seizures.  His body stiffens for a period of time, and he does the signature lip smacking that happens with seizures.  You're probably wondering what his neurologist says about all of this.  Well, that's a story that is getting a paragraph of it's own.

As you may remember, Brayden's case was reviewed by the Neurology dept at Dupont during the summer.  His neurologist called me in August to let me know that they saw epileptiforms in his EEG and they wanted to start him on Depakote.  Of course I wrote down everything they told me, and the doctor emailed me the titration instructions for the Depakote.  I asked about doing an MRI to find out why the seizures are happening and where they originate and once again they said they prefer not to do it because it is invasive.  So, that left me with questions.  Also, after reading the side effects of Depakote and hearing that he will have to get his blood checked here and there to check for liver damage, I decided that we were managing things just fine without the meds right now.  Recently I called to get a copy of the report with the details of their findings from the review.  The neurologist never typed one up.  So a report with new finding was never sent to the pediatrician to make them aware of the epileptiforms.  I decided than that it's time to find a thorough neurologist for Brayden.  Unfortunately, it is not easy to do this.  With a referral from a friend of her kids Neurologist, I called CHOP (Children's Hospital of Philadelphia) to make an appointment.  However, since Brayden has already been seen by a neurologist, I had to send everything I had from his medical record pertaining to his neurological care, to the doctor at CHOP, so they can decide if a second opinion is warranted.  This is so frustrating! If I'm not happy with my sons current doctor, it should be my choice who I take him too.  How does a doctor decide, who they want to care for and who they don't?  Based on the information I sent them, can they really say that my son is not important enough for them to see?  That they don't care if he's getting quality care or not?  I thought doctors took oaths to care for every patient?  How, in your heart, do you turn a child away?  It is heart breaking to me.  My only worry is that a report wasn't done regarding these new findings so all they have is my word, my notes, and the doctors suggestion to start Depakote.  I don't know.  I am praying that God takes care of this for me.  It is hard taking your child to a doctor you don't trust.

Ok, onto some very exciting news!  On September 23, 2013 our legislation for Involuntary Breath Holding Spells Awareness passed the house of representatives with a unanimous vote!  This a huge step in the right direction of spreading national awareness for this condition!  Our next step is congress!  So I wrote a letter to Congressman Patrick Meehan sharing Brayden's story, and our journey with BHS.  This letter was delivered to Congressman Patrick Meehan by my state rep's office!  While I am waiting for my next steps with the legislation, I am making strides in spreading the word and educating the public on BHS.  Ethan, my oldest came up with the idea of making loom bracelets with the BHS colors (purple, white, & blue) and selling them to help raise money to further our awareness efforts.  Well, I took this idea and I am running with it!  The bracelets are $1, and I will sell them to anyone interested with access to our website, and this blog to give people the materials they need to learn about this condition.  My sister bought 20 of these bracelets to give to her coworkers, and came up with the idea to have Brayden and Ryan come up to her work to hand them out with a write up on BHS.  So we did, and what a great experience this was!  By simply sharing a story you can bring so much awareness! I have now gained the support of past coworkers from Apria Healthcare (a previous employer of mine)!  One of the supervisors is even going to share my story with her bosses to see what we can do about getting corporate sponsorship from Apria!!  This is so exciting! Anyone who reads this and wants to get involved, there is something very simple you can do, and that is share your story!  By simply sharing your story, you are spreading awareness, gaining support for our cause, and helping to make BHS a household name!  By doing this you are helping to rid BHS of the stigma, that our kids are now forced to walk around with!  

There are more plans in the works.  Fundraising events, walks, awareness apparel and merchandise, educational materials for doctors and medical staff, information pamphlets for parents with newly diagnosed children!  I am very excited about all of this.  All we need is a positive change, and that change starts with the parents of breath holders!!

Thank you for reading and for your continued support.  Please take a minute to check out the following resources.

www.BHSAwareness.com

www.facebook.com/BHSAwareness

If you are on Facebook, and are looking for support, you are not alone! Join Parents of Breath Holders!

Involuntary Breath Holding Awareness News!

On Monday September 23, 2013, in a unanimous decision, the House of Representatives passed our legislation for Involuntary Breath Holding Awareness Day!  This legislation which recognizes July 14 as a day to bring awareness to this poorly named condition is a big step for parents who care for children with this condition and suffer the ignorance of medical professionals and the general public.  However, it is only a small step in a very big dream I have that one day our children will not be labeled as defiant, and us as parents will not be looked at as crazy people for worrying.  Our next step in this journey is to contact congressmen and gain their support and bring this legislature to a federal level.  I hope that with the help of my fellow parents of "breath holders", we can achieve this goal and so much more!!

If you or some one you know, has a child with BHS and are looking for support and resources, please check out and pass on the following links!

www.BHSAwareness.com  On Facebook? Join the group Parents of Breath Holders for support from an amazing group of parents!

Thank you for reading!

Awareness News and Breath Holding Updates!

Lets start with our legislation update! I received some good news today from my state reps office! Our legislation for Involuntary Breath Holding Awareness has 20 cosponsors in the House of Representatives! I spoke with my State Rep's assistant today and he stated that the House goes back in session at the end of this month and Rep Nick Miccarelli is pushing to have this resolution voted on ASAP!  After it gets voted in, myself and Rep Miccarelli's assistant will be coordinating to reach out to local congressman and state senators to push this to the next level!! I will keep you posted as we progress forward in this process!!

Since I last posted on Brayden's condition, we have been noticing the breath holding spells gradually getting worse.  From the time we started the oils, up until a couple weeks ago, Brayden's spells were very mild, similar to the way they started out after birth.  With him unable to breathe, and turning bluish purple, and then he would catch his breath.  A couple weeks ago, the length of breathlessness is starting to get longer, and he is starting to get that strained look in his face from being without breath for so long.  Every now and then, I see the twitching in his arms and legs again with these spells as he is gasping for breath.  With one particular spell, he was arching completely backward.  It is so upsetting to see these characteristics of severe spells returning to my little boy.  But his strength and ability to overcome and move on with being a 3 year old boy, keeps me strong!

Since I last posted Brayden is averaging 1-2 seizures a month.  I distinguish these seizures from breath holding spells, because they don't have and outside cause, such as upset or injury.  His most recent seizure lasted 3 1/2 minutes, too close to that point of having to scramble for the Diastat than I am comfortable with.  While this 1-2 a month seizure average is a far cry from how frequent these seizures used to be, they seem to be lengthening, which is scary to me.  With the diagnosis of Unspecified Pediatric Seizure Disorder now on paper, I worry about what this lengthening could mean.  But I'm getting ahead of myself with that worrying.  The important thing is compared to where we started, we have come such a long way, and Brayden is doing very well.  He is very smart, and developing in every way a 3 yr old boy should be, and I am very thankful for that.

Since I last posted, we had started Brayden on Melatonin to help him sleep at night.  I had read that in seizure disorders, patients who are overly exhausted are more susceptible to seizures.  So to avoid this I started Brayden on a low dose Melatoning (1 ml) around bedtime to help him fall asleep at a decent hour.  While it worked in this respect for a little while, Brayden was still waking up 3-4 times a night upset, he tossed and turned all night, and was waking up very early in the morning.  Realizing that this supplement was doing what I had hoped, I took him off of it.  I can't see giving him something whether supplemental or medicinal if it's not going to do the job.  Not sure what to do next, or where to go from here.  Might talk to his pediatrician about taking him to a sleep specialist.

Well, that is all the updates I have for now! Please check out the following resources and pass along to those you think might find this helpful!

www.BHSAwareness.com

On Facebook?  Check out the group 'Parents of Breath Holders' for amazing support, and story sharing! 

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!