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.