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!

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".

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...

Lowering the Dose: Week 3 .5ml

4/24/2013-Brayden's dose was lowered for the last time on 4/17/2013 to .5ml and we took him off the B6. Brayden has gone back to being a restless sleeper, however he is still eating very well, is active, and your typical 2 year old.  This week he experienced 8 night episodes, 2 simple BHS and 2 severe BHS.  Not a bad week all in all! From here we do no treatment for a week and then begin using the essential oils.  The part that I am most excited about is knowing that he won't have to suffer the nasty side effects that he did on the Keppra.  I pray that it works for us, if it doesn't I will be back at square one, feeling more lost than ever :/

What's in a name? (this is just me venting)

I'm sure many parent's whose children have BHS have been in this situation...or maybe not, but I have.  You're out with your child when they have an episode, everyone stops and stares, maybe when it's all over one of the "spectators" stops and asks if your child is ok.  So you explain that your child has a condition which causes them to lose their breath, sometimes pass out and/or have seizures.  "Oh, they hold their breath...I've heard of that", is the response.  

This is the one thing about this condition that has always infuriated me! My child does not "hold" his breath! His breath gets taken away from him!!  It has always bothered me that the medical term for this condition paints our children to be disobedient, defiant, spiteful, manipulative kids, who seem to have more power over their involuntary functions than their adult counterparts.  It takes an awful lot of work to hold your breath until you pass out and/or have a seizure, yet people think these kids do it so easily several times a day to manipulate parents for attention, or to get their way.  

It is time that people are made more aware of this condition, this so called "normal abnormality".  It's so common, yet so few people will see these episodes and know what causes it, know that it is completely INVOLUNTARY.  So few people will see these episodes, and instead of judging, and accusing, be sympathetic to the fact that my child suffers from BHS, he does not control BHS.  If only we could change the name to something else, Breath Cessation Spells, or something that tells a better story of this involuntary condition.  

That's all, I'm done now, thanks for listening ;)

It takes a village to raise a child...it takes a nation to raise awareness...

It's hard to find a person out there these days that doesn't have a facebook account, but I know they exist, and I want to reach them! I was introduced to "Parents of Breath Holders" (a facebook group) through another parent who came across this blog.  "Parents of Breath Holders" has been a great place for me to find support during this rough journey with Brayden.  From picking me up when I was having a rough day, to sharing stories and suggestions on where and how to find answers, this group of parents has been the best part of this whole experience.  At the moment there are 77 members in this group, and it makes me wonder how many have not reached this group yet, how many others could benefit from the support I have received.  Turns out I'm not the only one in the group who has felt this way.  In speaking with another mom, she to has often wondered how she could bring awareness, advocate for this poorly misunderstood condition.  And so began our planning!  What if we formed an advocacy group?  At this time, one doesn't exist for this condition.  Where would we start?  How could we reach others the moment they walk out of the emergency room with their child for the first time, and no answers, no where to turn?  We could provide this, but how?  

First things first, I wrote to our State Rep, to see if he could provide me info, or a starting point.  We are in the process of scheduling a meeting.  We have a fact sheet for Breath Holding Spells, provided by one of our moms in the group.  I think this group itself is a great starting point for other parents of Breath Holders, but we need to work together to get the word out there.  Since this is not a localized group, we could reach other parents going through this same experience throughout the country.  Once we get the basics worked out, spreading the word to anyone who needed it would be rather simple.  The difficulty would lie in finding ways to bring Breath Holding Spells to the forefront of medical training.  To get doctors and medical staff a better way of providing info to parents, and to make sure the info provided is accurate, and uniformed.  Increase knowledge, decrease contradicting information to parents regardless of their location. 

My own personal hope for this would be to get studies done to see if any long term effects could be seen as a result of these spells.  I would really like to get the name changed for this condition.  "Breath Holding Spells" makes it sound like these children voluntarily hold their breath, which is not the case.  Even the term "Involuntary Breath Holding Spells" seems to contradict itself.  I'm not sure what it should be called instead, but there's time to think about that.  I hope that with the 77 members we have right now, we can work together to make this work for other parents in our situation.  We know what it was like to leave the doctors office or hospital with only the knowledge that there is no treatment, it will happen again, and that they "should" grow out of it by the age of 6-8.  Our experience could help so many, and I feel there is no reason why we shouldn't!

Lowering the Dose: Week 2 1ml

4/16/2013-As of April 10, 2013 we lowered the dose of Keppra to 1ml and kept Brayden on the B6.  Brayden continues to wake pleasant in the morning, is your typical 2 yr old during the day, and is eating well.  He still has not displayed any aggressive behaviors, once again reinforcing my belief that he had Keppra Rage.

Over the past week, Brayden had 1 night episode, 3 severe BHS, 4 seizures, and several simple BHS.  Tomorrow we lower the dose one more time to .5ml and stop the B6.  This will be his last week on medication.  We will then do one week with no medicines, vitamins or other means to treat seizures, to make sure everything is out of his system before starting the Essential Oils.

At this time, I have the Frankincense, Serenity, and Balance.  I will be ordering Lavender, and a carrier oil call Fractionated Coconut Oil, which is used to dilute oils when using them topically.  I still am getting info on how to use the oils, where to apply, how to dilute, and how often to apply.  I am looking forward to starting this process as with anything it takes time to start working.  I am excited that this could be the resolution to this condition, rather than medicating.

Lowering the dose: Week 1 (1.5ml)

So beginning on April 3, 2013 I lowered Brayden's dose from 2ml to 1.5ml, and kept him on the B6, with the intent to take him off the medicine.  By day 2 two I saw a huge improvement in his personality.  He was no longer waking up angry and being aggressive with myself and his older brother.  So much for the doctors thinking it was the terrible two's being mistaken for Keppra Rage.  As the week went on he was more with it, and his appetite came back.  It's been so nice seeing my little boy emerge from this again!

As suspected, we are seeing more seizures, and BHS and the return of his night episodes.  He's had 3 severe BHS which resulted in RAS (reflex anoxic seizures), and 2 seizures (w/no preceeding BHS).  He had 4 night episodes which start with him letting out a cry then tossing, turning and some thrashing in bed.  This happened a lot prior to the medicine and twice during the 24hr VEEG.  During the VEEG, when this would happen, his heart rate would jump from about 84BPM to about 147BPM (the exact numbers varied, however, the jump was always as drastic), and his brain activity was funky. 

Although it is so nice seeing the end of the horrible side effects, I can't hide the fact that it hurts to see the seizures and BHS return on daily/nightly basis.  Especially knowing it will get worse before it gets better. The good news is, I put the order in for the Frankincense and will be ordering the other oils (serenity, balance, and lavender) as well.  Today we lower his dose again, so I feel the knot forming in my stomach already.  Looking forward to being able to start the oils!

"Testing...is this thing on"
So, yesterday 4/3/13, I called the doctor to discuss the return of side effects from the Keppra (anger & aggression) and to let them know that after a short break from seizures (11 days) he was starting to have them again.  Not as frequently as before, but one every 2-3 days.  I wanted to know if the B6 was something that we could play around with as far as dosing was concerned to alleviate the side effects again, and if I was just being impatient as far as wanting results in regards to the seizures.

During my conversation with the doctor, she once again brought up how parents tend to mistake the "terrible two's" for Keppra Rage.  I, once again explained, that I'm not taking into account the times I interfere with him wanting to gain independence or the times he doesn't get what he wants and throws a fit.  I am talking about everyday, he wakes up angry...not miserable...angry.  I'm talking about how he will walk up to me and put his hands around my neck.  How he will go up to his brother for no reason and wrap his arms around him and throw him to the ground with a strength unlike a two year old.  The knowledge of how to hurt some one and the intention to, unlike any two year.  My son was two for 6 mos before starting Keppra and he never displayed this type of scary aggression.  He was on a lower dose of Keppra at first and never displayed this type of aggression.  Brayden is my 3rd child, not my first.  I'm not a first time mother who is not aware of what the "terrible two's" involve.  I know my son, I know he is a sweet boy, a goofy happy child who is going through the "terrible two's" yes, but this aggression...this rage is not from that, it is beyond that.

As far as the seizures were concerned, she mentioned that the test results showed cortical irritability, which definitely puts him at a lower threshold for seizures, but since he didn't have a seizure during the test it's hard to say what the next step should be. She really likes the Keppra because it's the most benign medication for kids.  She also mentioned that you have to be careful with dosing on the B6 so as not to overdose a child.  She mentioned possible next steps would be to increase the Keppra to 2.5ml and maybe get the B6 up just a bit.  Our other possible option was to start him on a new medicine on top of the Keppra.  Once we feel we are at a good spot with the new med, we could start bringing the Keppra down and eventually get him off of it.  She decided she wanted to speak with Dr. Bean, the head of Neurology, to see what he thought would be best.

I was at the bank when Dr. Lang called back so she spoke with my husband regarding what next steps would be.  Here is what she said.  She first thought that we should get a video of his seizures.  She also stated that they are considering doing another 24 hr VEEG.  She stated that his test results were not abnormal enough to cause seizures, and that she feels we should increase the Keppra first to 2.5ml then to 3ml and increase the B6.  I was so angry.   Everything she said in the conversation with my husband contradicted what she told me, except for increasing his doses.  They don't realize that when I talk to them I write down everything they say.

Here is what I take issue with.  They saw a video of Brayden's episodes, that's what made them decide on the 24 hr VEEG that we just had done in December (refer to previous post).  Second, you tell me that he has cortical irritability which puts him at a lower threshold for seizures, then tell my husband that his test results were not abnormal enough to cause seizures.  And finally, with all that said and the fact that they suddenly don't think he's having seizures, they want to increase his Keppra (an anti seizure medicine) to 3ml! A medicine I don't like him being on anyway because its causing this aggression and rage.  I don't like medicating my kids to begin with, I definitely don't want to be pumping him with more of the medicine that is causing personality changes in my son and causing him to be out of it during the day.

I am part of a facebook group called Parents of Breath Holders, and a few parent's have started using Essential Oils on their kids and have gotten great results.  I have contacted these parents for info.  I am done with doctors treating me like a moron, and contradicting themselves.  I am done with pumping my child with medicine that has changed him so much and isn't even working properly.  Tired of feeling like they aren't hearing me when I talk.  I am working on slowly bringing Brayden off of the Keppra.  I am praying that these Essential Oils do the same for Brayden that they have done for other children.  He has been through so much, more than any child should have to go through.  As a family we have been through such an emotional roller coaster.  We get our hopes up constantly, only to be disappointed in the end.

Ugh, tomorrow is another day!

Fast Forward 1 year 4 mos (from day 1!)
That's how long it took us to get the answers we were searching for!  Lets start from my previous post, since keeping up hasn't been easy.  The results from Brayden's 90 min sleep deprived EEG came back normal as you probably could have guessed.  At this point I knew it was true...the only way to be heard, or taken seriously would be to record Brayden's episodes.  So armed with my phone set on video capture and in my pocket at all times, I did one of the hardest things I knew I had to do.  It's human nature for a mom to comfort their child so to take myself out of that frame of mind to get this done was difficult. I got the last 30 seconds of the full episode, but thankfully it was enough.  So here it is...

After taking this I called the pediatrician to share the "good news": I have a video.  She told me not to worry about bringing the video and Brayden to her.  Call the Neuro right away and schedule the appt.  So I did. I was nervous that the short video wouldn't be enough, that they would want to see this from the beginning.  Fortunately, I was wrong.  The Neurologist, Dr. Lang at A.I. Dupont was shocked.  Her exact words: "Oh, wow. Wow. Do you mind if I take this to my colleagues"?  Obviously, I didn't mind, show everyone you know if it will get us what we've been searching for.  I sat in the exam room with Brayden, saddened and relieved.  This was the beginning of finding out what was "wrong" with our son.  She came back with the video immediately saying we had to schedule a 24hr VEEG (Video EEG).  She looked at the video again with me as I explained what led up to this video, the way Brayden was acting.  I stressed to her, that this was NOT preceded by a BHS, he was not crying, hurt or upset for any reason.  He had been sitting on my lap, suddenly started squirming around and trying to, for lack of better words, hide in my chest.  Yes he was upset about something...but what?  I sense that he feels these episodes coming on and that's what triggers the upset.  She pointed out parts of this video that are characteristics of seizures that I had not even picked up on.  To this day it is hard for me to watch it.  It's permanent evidence of a difficult time in my sons life.  One I hope he grows out of before he is old enough to realize or remember (he will be 3 in July).  Moving on...

24hr VEEG 12/27/12

I know some of you may read this and think, who in their right mind schedules 24 hr testing on their child right after Christmas.  Trust me there was logic behind it!  On Christmas day Brayden unwrapped his gifts.  Since the amount of presents can be a bit overwhelming for a child that age, I packed a few things for the hospital right away.  This way it would be a brand new distraction!  This VEEG was not a sleep deprived test, however, we did have to stay overnight at Dupont.  

My sister had a sleepover at her house for my older boys.  My mom and younger sister stayed as well to help, and add to the fun.  Brayden and I left for the hospital at 9:30am.  After getting registered, admitted, and a half hour electrode application process, we were in a room.  I admit I was nervous about how Brayden would handle all of this.  He was confined to a bed, with 21 electrodes glued to his head and wrapped in gauze.  I was prepared for this to be a rough day/night.

                    

Getting through registration and admissions.           All hooked up and ready to go!

I need to take a minute to brag about my amazing son!  He handled this extremely well.  He was pleasant, and calm. Unlike I had seen him in a long time.  Yes, I did pack a good bit of toys and distractions, but I can't even take credit for that because it still could have gone horribly.  I was in complete awe of my 2 year old little man, as he faced what no child should have to face.

                                          

We played...                                                                                He napped.....                                          

We played with toys the nurses gave him...                                   He ate.

He was amazing!  We watched TV, I taught him how to make his bed go up and down, lol!  It was late when he finally fell asleep.  I was awake through the night.  Kept an eye on him, on the monitors.  I realized something happening with the tracings.  A few times during the night, his heart rate would jump from 84 BPM to 147 BPM, at the same time the brain waves would go crazy.  He would start tossing and turning, but not stiffening or arching that you see in the video.  I made sure to tell the nurse in the morning.

Morning came and Brayden woke up, pleasant again.  It was as if he knew it was time to get unhooked, lol         

Good Morning!                                 Unwrapped...                                 ...and unhooked!

As you can imagine, there was quite a lot of time between being unhooked and being discharged, lol.  After being cooped up in a hospital bed for 24 hrs, you can imagine my 2yr old was bouncing off the walls of the hospital!  We let it go and even went for a few wagon rides before we left! He deserved it!                                                      

My happy boy :)                                                                                      On our way home!

It can take up to 3 weeks for the results, as they have to match all the video with the EEG, and EKG readings.  I tried to be patient, but as the days and weeks passed and the episodes continued my patience was wearing thin.  One morning Brayden had 3 back to back episodes.  He was having a hard time recovering.  I was a wreck from it, thinking about how I would have to leave for work soon, and leave him again, like I have in the past, hoping he would be ok.  Constantly calling to check on him.  A bundle of nerves.  That was the day I quit my job.  I decided, that regardless of whether we got answers or not.  I couldn't leave him in this condition anymore. And I couldn't leave the possible responsibility of his care in the hands of some one else.  I was his mom, I was going to see him through this.  Thank God for a supportive, understanding, hard working husband!

Thank you God!

During those weeks of waiting, I did a lot of praying.  Prayed that God would guide the professionals looking at the testing.  Prayed for results.  Prayed that whatever the results were, He would give me the strength and the patience to keep going.  We got our answers!  The testing showed that Brayden has cortical abnormalities, and convulsive syncope.  The doctor stated that they picked up several BHS during the testing.  I mentioned that this was odd, since he did not have one episode.  In fact, he was more pleasant and calm than I have seen him in a long time.  She was a little stunned by this.  It seems his heart and brain/nervous system are having these abnormal occurances without him even having physical episodes.  The doctor feels that the more severe the occurance, the seizure will prevent itself.  

What's next?

The prognosis is that as kids with this condition grow and their bodies mature they grow out of it.  There is a very small percentage of kids who develop epilepsy as teens and young adults.  We started Brayden on a trial of Keppra in January.  By the end of the first week, I wasn't seeing any improvement at all in Brayden.  We were still dealing with 2-4 seizures a day, and several severe BHS.  I called the Dr, to see how long for the medicine to establish itself in his body, and results to be seen.  She was shocked that he was still having seizures.  She increased his dose from 1.5ml, to 2ml.  This seemed to have a good effect on the seizures.  There was a significant decrease in the seizures.  However, on the higher dose, I began to see a side effect I was hoping we wouldn't.  Keppra Rage.  Similar to "Roid Rage", children on Keppra can experience changes in personality including moodines (which lead to increased BHS), and aggressive behavior.  The aggression is what worried me most.  Again, I called the doctor.  After discussing the progress with the seizures, and the side effects of the higher dose, we decided the best option was to start Brayden on a B6 supplement of 25mg.  Keppra, depletes the bodies supply of B6 which can cause these mood swings and aggressive behaviors, so we had to replenish. We saw immediate results! We went days without seizures or mood swings or aggressive behavior.  Brayden was happy, energetic, goofy! It was such a pleasure to see my little boy again.

Our Roller Coaster Ride

Here we are April 3, 2013.  Almost 3 months since diagnosis and beginning of treatment.  The doctor, in our initial conversation warned me that it would be a frustrating journey, with ups and downs, follow up calls and visits.  Every child is different so finding what works for Brayden would be trial and error.  Each time I know I have to call the doctor to report progress or lack there of, I feel my stomach turn.  Having to make such heavy decisions for yourself is one thing.  Knowing your choice only directly effects the life of your child is a whole other weight, that is very unpleasant for me.  His ups and downs are caused by my choices.  It saddens me that this far in, we haven't yet found what works for him.  I pray that the next choice I make will hold his relief.  That it will bring back the son I know is still there.  That he will be able to experience the pleasure of being a 2 yr old again...before he turns 3 in July.  I write this as I hesitate to call the doctor to report the return of the aggression and moodiness, and yes the return of the seizures.