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.

Pushing Forward...

Nearly a year after Brayden's first severe episode, and two years after his birth and start of this whole thing I am still trying to get answers. But a few months ago, I received a referral from a friend at work that maybe the answer to my prayers! When she heard me talking about Brayden's episodes she was shocked, she shared her experience with her daughter who suffered from similar episodes in her teens! She was understandably frustrated, not knowing what was wrong, and not getting many answers after countless tests that showed normal results. Her daughter once had an episode during an EEG...results were normal! What made the difference for this woman was having the care, concern and understanding from her daughters pediatrician. I have now switched Dr's for Brayden and after only a first appointment I feel hope, that she will do the same for me and my son that she did for my friend and her daughter.
Brayden's episodes have become more frequent and severe. He has several severe episodes a day where he loses consciousness. I was told that it wouldn't happen in his sleep, and it has. I was told that its caused by upset or injury yet he's had episodes with no preceding trigger, and even during bouts of laughter. 
Our first appointment with the knew pediatrician went well. She spent an hour and a half with me and Brayden! Asking questions, listening to my story, going over dates, and really getting to know the characteristics of his episodes.
The result...she agrees that there maybe something else going on here. Although it is not her area of expertise, she says his episodes are characteristically similar with an epileptic disorder, or movement disorder. She is referring Brayden to an epileptologist and is requesting a 24+ hr EEG (she wants a minimum of 24 hrs, but wants to see how long Brayden will "allow" us to get away with). She is also referring him to a pediatric apnea center. She was happy that I didn't settle for what our previous pediatrician decided to diagnose him with. She was even happy to hear I did my own research, and impressed with what I found. The Dr even brought Brayden's file home to review, and called me later that night with more referrals!
I may not have an answer yet, and I may not be able to make Brayden better yet, but knowing he has a doctor that is willing to take care of him, and who shows compassion is such a relief! I finally feel like we are moving forward.
When you are dealing with the possibility of your child having a medical condition that you can't fix, and you are being pushed away and your child is being overlooked. I urge you to be persistent, and follow your gut. Never settle, or accept what a Dr is telling you just because they have a degree. If it doesn't feel right to you, push forward for your child.  I became very discourage after hearing from the doctor's that this was nothing.  What helped me was have the help and support of family, and friends.
Thanks for listening and I will post updates of Brayden's appointments and testing...and hopefully...results!!!

"your son has had more testing than any other child for this..."

I know it has been a long time since my last post, but life has gotten hectic to say the least! Since I am firm believer in taking the good with the bad, here is the good...my oldest just started Lacrosse! Very excited about that! Ryan (3YRS) knows his alphabet, and can put a 25 piece puzzle together in a blink of an eye! My youngest...Brayden (for whom this blog is dedicated) is advancing in every way you would expect for an almost 2 yr old! Very active, trying to claim his independence. Everything you would expect from a 2 yr old male. However ,some things never change. After a short break from severe spells, they are, once again, back with a vengeance! Monday, (3/19/2012) Brayden had 3 spells in a 30min period, all were severe with loss of consciousness. In between spells he was tired, lethargic, whiny, clingy, and exhibited twitching. Not just physical, but you could hear the twitching in his weak cries.

At this point, I am tired of hearing "it's normal, he'll grow out of it", from doctors. At 21 mos old, this breath holding is NOT normal. I feel that the medical profession...or at least the Dr's in my son's practice have become so desensitized by their job to understand the pure worry of a mom who wants to make her son right again.

What I've learned in research these past few months is scary. I started contacting out of state doctors for a 2nd opinion.  Google "breath holding spells and the vagus nerve", you will be beside your self.  All I want is a definitive answer, and my sons pediatricians think they've given me that based off 2 tests where Brayden had no spells.  Yet they treat me with disrespect for worrying when they told me not to.  As I have said before...I am not a doctor...but I know MY child better than anyone.  What he is going through is INVOLUNTARY, UNCONTROLLABLE, SCARY,and  NOT NORMAL!

Will keep you updated!