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. 

One & a Half Hour EEG:
Part 1: Sleep Deprivation Boot Camp 
Sleep Deprivation began on Tuesday August 21. Brayden was not allowed to nap, and lasted until the test.  We had to keep him up to as close to midnight as possible, and wake him up as close to 5am as possible Wednesday morning. Be prepared to be as sleep deprived as your child is, if not more, because you are the one working to keep them up/wake them up, as well as take care of your normal daily business.  2 of my life savers were..

 
...water play and bath time (not pictured obviously).
We also enjoyed coloring...

 
In the end we made it very close to midnight...

 

11:43pm                                              11:45pm

EEG Day:
Waking up at 5am isn't easy for anyone...

 
But we made it through the day and to the test. As with our last visit to DuPont, it was nice to be in a hospital where care and concern take precedence.  The hospital itself is child friendly, bright, easy to find your way around.  The entire staff from those that great you at the door, to the nurses and doctors are not only there to make money...the genuinely care for your child and it shows, and it feels good to be there.  Even though I'd rather not have to be here with my son.  WE had a rough start as the EEG Tech tried to hurry through the electrode application process.  Brayden was for obvious reasons not happy.  But they put Toy Story on for him and let me hold him (rather than using hospital restraints like they did last year at that "other" hospital).  He calmed down and within 15 mins fell asleep, which is how he remained the rest of the test.

<--EEG     On the way home-->Brayden was and still is completely tired out.  We left the hospital at 4pm, and he is still sleeping at 7pm.  He is not showing any signs of waking up any time soon, and who am I to fight him! He has been a trooper!  We don't have results yet, but were told if we don't hear from the doctor in a week to call, but that we should hear something before then.

Will keep you posted...

The Calm Before the Storm...
Ok, well that might be a little dramatic but I think I'm entitled to dramatics every now and then, lol.

What I'm referring to is the peaceful night I'm having compared to what I'm assuming my night will be like tomorrow as we prepare for Brayden's 1 1/2 hr sleep deprived EEG.  In preparing for this EEG, we have to keep Brayden up to as close to midnight as possible tomorrow night and wake him up as close to 5am as possible Wednesday morning.  His EEG is not until 2:30pm on Wednesday.  It is going to be a rough day, trying to keep him up while he is so tired and cranky.  It's hard when you know that the best thing for your child is also going to be the hardest thing to watch him go through.

It's been hard to find anything online regarding a 2yr old having a 1 1/2hr EEG, so I will document as much as I can in hopes that it will help some one else going through this.

Appointment Update:

Today we met with Dr. Mary Jane Lang and Dr. Charles Bean at DuPont Hospital For Children.  As soon as you walk through the doors of the hospital you can feel that this truly is a fresh new start.  A pleasant, happy to help staff greats you with a smile, they are happy to point you in the right direction rather than making you feel like you're burdening them.  Anyway, onto the important stuff!

We first met with the Physicians Assistant Dr. Mary Jane Lang.  She took a history, did a physical exam and interacted with Brayden.  When she was finished she called in the neurologist Dr. Charles Bean who went over the history trying to get more exact dates, lengths, and progression of Brayden's episodes.  They decided they wanted to try to trigger an episode by causing upset or frustration, which tends to be a trigger for Breath Holding Spells.  However, they were unsuccessful.  They tried getting some tests scheduled right away, but between trying to coordinate with cardiology, and trying to get an approval from the insurance company to do a 24 hr EEG right away (they denied this due to the fact that the last EEG Brayden had is over 4 mos old), what was supposed to be a 1 1/2 hr appointment, turned into an all day visit.  In the end we had to schedule to come back for the testing.

Dr.'s Thoughts: The frequency of Brayden's episodes is worrisome.  The fact that he goes stiff instantly rather than going limp and then stiff is indicative of a seizure.  Dr. Bean feels that we are not looking at a vagus nerve defect here, due to the fact that he applied pressure to a corroded nerve in the neck that would cause the vagus nerve to slow the heart beat, Brayden's heart beat remained steady...thank goodness!

Next Steps:  Schedule an appointment for a 1 1/2 hr EEG (Wednesday August 22 at 2:30pm, DuPont).  This is a sleep deprived study.  We did this before at CHOP (Children's Hospital of Philadelphia), but it was a 40 min EEG.  His results were normal.  Our next step after this would be to schedule a 24 hr EEG/Heart Monitoring/Video Monitoring.  This requires an overnight stay in the hospital.

My Thought's:  It's so nice to finally be heard an taken seriously!  One of the nicest things Dr. Bean did was turn to me and say, don't worry, you're not crazy.  Sounds simple, but unless you have been through what I went through with our previous Dr.'s, you wouldn't understand why these 5 words meant so much to me.  I feel confident that Brayden with now get the care and attention he deserves from people who still have the compassion that all Dr.'s should have.  As a mom, I don't want my son to have to undergo these tests which will be difficult for a child his age, however, at the same time my biggest fear has always been that something more serious may be getting missed.  I am thankful that we have gotten this far, and have found doctors who truly want to get to the bottom of this...just as we do!

Starting Fresh...

After many phone calls to get a neurology appointment for Brayden, we have an appointment tomorrow morning at 8:30 at Nemours Alfred I DuPont Hospital For Children!  While, I am excited that we finally seem to be getting the attention Brayden deserves, the uncertainty of what tomorrow's appointment brings is a bit overwhelming.  If you have been reading my posts you probably already realized I am a researcher by nature.  I went online to find information on 24 hr EEG's for children, and found that there are several ways this can be done.  I even called the Neurology department to try to get answers and found out that how they do this test is based on the neurologist evaluation of the child.  Whether it's handled as an in patient procedure or out patient...whether he will be "hooked up" tomorrow or rescheduled for the test.  I have prepared for either situation, however, my hope is that the test will begin tomorrow and we can take him home while he's attached to the EEG.  

Even though I am a little stressed about what lies ahead with the test and the results, knowing that we are getting a fresh start with a new pediatrician, new neurologist, and new hospital gives me hope that there will be new progress.

As always, I will update this blog on the outcome of Brayden's appointment.