Brayden's Breath Holding Journal

This journal starts out with past recollections due to the fact that I was not aware at the time, what I was dealing with.  Once this went from mild to severe (I would also call it traumatic) is when I realized this problem has been around for quite some time.  So from birth (7/14/2010) to present (9/21/2011, 14 mos old) this is memory based.  Which I can assure is accurate since it is a frequent occurrence.  Aside from DOB, I don’t remember exact dates.  I can tell you that for Brayden to not have a BHS during the course of the day is extremely rare.

Time Line

7/14/2010-Birth. Immediately after birth, Brayden let out a few cries, then stopped breathing and turned blue, and went limp on the warmer.  Because I was still being taken care of, I can’t remember if there were any “seizure” like movements.  I know the NICU Doctors were brought in.  After he started breathing again, I was able to hold him and spend time with him.  However, he was brought to the NICU for observation which was uneventful.

7/14/2010-9/10/2011- Brayden would have what I now know to be BHS’s.  I always just thought it was because he got so upset he had a hard time getting the next cry out.  No other symptoms accompanied this.  Just a cry, open mouth with no cry for maybe 30-60 seconds, then he would start crying again.  Typically, I would just try to calm him down by talking in a soothing voice saying “come on Brayden, let it out”.  Eventually he started crying.

9/11/2011- Trigger: Diaper change.  Brayden lets out a cry, stops breathing, turns blue.  Brayden was on his stomach, but my husband noticed seizure like movements.  (Not sure of length of episode)

9/12/2011- Trigger: I sat Brayden on the floor.  Brayden lets out a cry, stops breathing and turns blue.  I start calmly saying “come on Brayden, let it out”.  Brayden tries to crawl away at which point he rolls onto his back and exhibits seizure like movements in arms and legs.  I notice his eyes rolling back in his head, as I pick him up he passes out and is completely limp.  I thought he died.  I start to dial 911, but as I am getting ready to push talk on the phone I notice his eyes flutter open and shut again and again, as if awakening from sleep.  I hang up the phone to see what he does, and he slowly starts to come around.  Entire episode from initial cry to coming to was about 3-4 mins.  Call the Dr instead and explain what happened.  They tell me BHS and not to worry, they don’t even suggest bringing him in to examine.  As time goes by I notice he is lethargic, unsteady and just not acting himself.  I take him to the ER, here they listen to my story and confirm BHS and send me home with no further testing.  Only suggest bringing him back if I note any changes in his behaviors during an episode.

9/13/2011- Triggers: Unkown.  Two episodes.  No loss of consciousness, but definite near loss of consciousness.  Let out a cry, stopped breathing, turned blue, seizure activity in arms and legs.

9/14/2011- Two episodes between 8am-10:30am.  Episode 1 Trigger:  Unknown, but definitely upset about something.  Stops breathing, turns blue, seizure activity, passes out.  When he comes around he’s lethargic, unsteady, and not himself. 

Episode 2 Trigger:  I sit him on the floor.  Lets out a cry, stops breathing, turns blue, seizure activity in arms and legs, does not pass out.  After the seizure activity stops he just lays there very lethargic and seems very tired.  After maybe a minute he gets up but only to crawl to me and sit on my lap and lay his head on me.  After a few minutes he gets up but is unsteady on his feet the rest of the day.

9/15/2011-9/17/2011- No episodes.  However, Brayden is significantly more irritable, tired (although he doesn’t sleep more than usual) unsteady on feet and very clingy.

9/18/2011- Trigger: Unknown what exact trigger was, but became upset while playing with older brother.  Stopped crying, turned blue.  I laid him on his side, seizure activity different from what I have been seeing.  After laying him on his side, his back arches completely including neck and head.  One arm goes stiff and straight while other arm curls into chest.  Seizure activity comes from entire body instead of the extremities which is what I was seeing normally.  After it stops, he lays there for a minute letting out weak cries and just looking around, and then sits back up. 

9/19/2011-  Call pediatrician office again and speak to the nurse regarding spells.  The frequency, the severity, and the change in seizure activity.  Tells me to bring him right in. Dr. Hepburn does an exam and we spoke about Brayden’s episodes, she took notes.  She decided that Brayden needed to see a Neurologist right away to rule out seizures.

Trigger: Unknown.  Stopped breathing, turned blue, back/neck/head arching, seizure activity, did not pass out.

9/20/2011- Trigger: Taken off table he climbed onto and placed on the floor.  Got upset, let out cry, stopped breathing, turned blue.  No seizure activity, did not pass out.

            Since 9/11/2011, I have noticed significant changes in Brayden.  My son who is happy, energetic and eats like a 16 yr old boy is disappearing.  He is very clingy and whiney, has significant and extreme loss of appetite, and seems tired out most of the day.  The boy who used to play in my room while I got ready, recently just laid by my feet and watched.  There are moments where it seems he is zoned out, or staring off into space.  He is unsteady on his feet, and will fall several times a day, not because he tripped over his own feet or a toy, but because his legs just give out from under him.

9/21/2011- Few simple BHS, but no seizure activity or passing out.  Seemed to have a decent appetite.  Irritable and whiney most of the day, very clingy, unsteady footing.

9/22/2011- 7:40am Trigger: Upset after me not letting him pull my hair.  Stopped breathing, turned blue.  I laid him down, he did not pass out but exhibited seizure activity in extremities.  Afterward, he laid there like he was about to fall asleep but didn’t.

9:13am Trigger: Unknown, but became upset.  Let out cry, stopped breathing, turned blue.  I picked him up to move him to a clear area, he became very stiff.  As I laid him on the floor his back/neck/head arched completely, seizure activity, eyes started to roll back, but he didn’t pass out.  Seizure activity stopped.  Let a few weak cries out, closed eyes.  Opened eyes, rolled onto back and just stared off into space.  Arms and legs twitched a few times.  Then he seemed to be ok, but just laid there for a little, tired out.

@3:00pm Trigger: Not allowed to climb on dining room chair.  Simple BHS.  Had two right in a row because he tried again to get on the chair immediately after the first BHS.

**Brayden was whiney and irritable during the day. I had school at night & he was in bed when I got home, but I think he was fine.  Ate a decent breakfast, only a few bites at lunch, ate good at dinner.

9/23/2011- 6:54am Trigger: Wanted to play in the fridge.  Resulted in simple BHS.  * Barely ate at breakfast.  Has been lethargic and subdued since.  Ate pretty good at lunch.  Irritable and easily agitated during the afternoon.  Tired, due to not taking a full nap.  5:45pm Trigger: I put him down.  Simple BHS. 

9/24/2011- 8:20am Trigger: Unknown, very whiney and agitated this morning.  Crying a lot for no particular reason.  Simple BHS, turned blue.  Did not exhibit seizure activity or pass out.

9:40am Trigger:  Became upset while playing on the floor with brother.  Simple BHS, turned blue.

9:46am Trigger:  Diaper change.  Had 2 in a row.  BHS, turned blue, seizure activity in arms and legs.  No back/neck/head arching or passing out. 

5:13pm Trigger:  Fell in kitchen.  Simple BHS, turned blue. No other symptoms.

6:54pm Trigger:  Fell in the living room. Started to cry, stopped breathing, turned blue, arched back/neck/head, seizure activity in upper body and head.  After seizure activity stopped, laid on floor, seemed tired and out of it.

9/25/2011- Been a pretty calm day.  2 simple BHS.  Was pleasant this morning, but woke up from nap whiney and irritable.

6:35pm Trigger:  Took him off the dining room chair after he and his brother climbed on.  Cried, stopped breathing, turned blue, slight arching of back/neck/head, seizure activity in arms and legs, as well as head.  Calmed, but noticed eyes fluttering around under partially opened eye lids.  No passing out.

9/26/2011- 2:20am Trigger: Unknown.  Woke up with a cry, stopped breathing.  When I got to his room he was laying on the floor.  Couldn’t tell skin color due to darkness of room, but there was seizure activity in extremities.  Stopped, and just laid there for a little, eye lids fluttering opened and closed.  He was up after that until 4:30am.  Slept until about 6am. 

8:30am Trigger:  Fell while playing with older brother.  Simple BHS, turned blue.  No seizure activity or passing out.

*Because of the lack of sleep last night, Brayden is understandably more irritable and whiney than usual causing him to have numerous BHS, and turning blue this morning.  I have not been able to keep track of the time on all of these to log them.

1:00pm Trigger:  Wasn’t allowed to play in the bathroom.  Let out cry, stopped breathing, turned blue, slight arching of back/neck/head, seizure activity.  Weak and tired following.

5:30pm Trigger:  Can’t remember.  Probably me just walking out of the room, he’s been on edge all day.  Simple BHS.

5:18pm Trigger:  Walked away from him to check on dinner.  Simple BHS.

*Brayden had several simple BHS between 1:00pm and 5:00pm as well as after 5:18pm.  He was extremely irritable, whiney and clingy today.

9/27/2011- Visited neurologist at CHOP.  40min EEG & visit Dr. Berman.  No episodes during EEG. Results: EEG=Normal, Dr. Berman=Frequency is abnormal, Diagnosis=BHS, Advise=Try to eliminate element of surprise from day and see if that helps.  Call or come back if the episodes get worse or you see a change in behaviors during the episode (same old, same old :’( ).  Brayden had 2 simple BHS from the time we got home until about 7pm.  From 7pm until 8pm Brayden had several more spells.   All spells were brought on by upset.  Triggers range from me putting him down, me taking him off a chair he climbed on, me wiping his nose, etc.  These were simple BHS with cyanosis.

7:30pm Trigger:  Brother took toy away from him.  Cried, stopped breathing, cyanosis, seizure activity.  This prompted me to keep him up till 8pm.  He was very tired, irritable and clingy after the appt and for the rest of the day.

9/28/2011- Today has been a rough day.  And even though I feel like documenting all of this has been a waste of my time thus far, I will continue on.  This morning was chock full of BHS w/cyanosis.  Brayden has been very irritable, cranky and clingy.  Spells were caused by me putting him down, not picking him up, or simply nothing at all.  Between 8am-10:30am three of the “spells” (I use quotes because, despite what the genius doctors say the uneasy feeling remains in my gut) were severe.  Stopped breathing, turned blue, arching of back, neck, and head, and seizure in upper body and head.  From this point on I will continue with my previous format of documentation.

3:46pm Trigger:  Unknown, simple BHS.  After this Brayden seemed to be his old self.  He spent the rest of the day happy, playful, energized!  Hoping this is a sign of more good days to come!

9/29/2011- 6:54am Trigger:  Wanted to be held, but I was cutting his food.  Cried, stopped breathing, cyanosis, seizure activity in extremities.  Brayden woke, cranky, clingy and still very tired.  Had some milk, but not eating well at breakfast.  Brayden has had a cold so he hasn’t been sleeping well.  So the mornings have been rough with one spell right after the other, always preceded by upset.  On top of that trying to study for a test and catch up on school work that has been put on the back burner for obvious reasons.  So I have not been able to log every spell.  Hope to get back to it tomorrow.

11/9/2011- Stopped logging spells because I stopped seeing the point.  Have to admit there have been a lot of good days though.  By good days I mean simple BHS w/no seizure or passing out.  After the EEG, Brayden also had a 24 hr Holter Heart Monitoring which you guessed it…no severe episodes so it came back normal.  Everyone says I should be happy and I am always cautiously optimistic.  That mixed with the simple BHS (instead of severe BHS) and you have a mom getting comfortable! So NAÏVE!!

11/7/2011- Morning Trigger:  Got hurt while playing with brother.  SEVERE BHS.  Let out cry, stopped breathing, cyanosis, arching of head/neck/back, seizure activity upper body and head, eyes rolled back, passed out!  Several BHS with cyanosis & seizure activity throughout the day.  Did not log as I am doing this off memory cause I only started this back up today (11/9/2011).

11/8/2011- Morning Trigger:  Unknown.  FULL SEVERE BHS! Let out cry, stopped breathing, cyanosis, arching of head/neck/back, seizure, eyes rolled back, passed out.  Several more BHS during the day with cyanosis, arching head/neck/back and seizure, but without passing out.

11/9/2011- Morning Trigger:  Unknown.  FULL SEVERE BHS! Let out cry, stopped breathing, cyanosis, arching head/neck/back, seizure, eyes rolled back, passed out.  **no appetite today, took a good nap, pleasant, didn’t eat lunch. 

8:15pm Trigger:  No trigger except maybe exhaustion.  Sitting on my lap, very figgitty, cried, stopped breathing, cyanosis, seizure activity, eyes rolled.  I don’t think he passed out, he calmed & was silent, with eyes closed.  After a bit he opened his eyes and let out some weak crying for a bit.

11/10/2011- 8:30am Trigger:  Don’t know, I was in the bathroom.  Cried, stopped breathing (I knew this from the disturbing silence) when I got to him he was laying quietly on the floor.  Not sure if there was seizure activity or passing out.  Based on the week we’ve been having I would say probably.

9:19am Trigger:  None.  Miserable in general today. Cried, stopped breathing, cyanosis. No seizure of passing out.

    

      ***DUE TO THE WEEK WE’VE HAD I HAVE NOT RECORDED ALL SIMPLE BHS ACTIVITY***

11/11/2011- Uneventful morning, waiting for the ball to drop...

8/6/2012-I realize that I have not kept up with this journal and I apologize to anyone that may have been looking at it for help with their own children.  Here is an update of the changes in Brayden's spells since the last time I recorded.  This is only an update on the characteristics of his spells, no dates, times or triggers have been tracked at this point.  The characteristics are listed below

• Brayden lets out a cry (not several)
• Stops breathing
• face turns blueish purple
• body stiffens and arches completely and severely
• seizure
• passes out

After an episode the effects of the episode are as follows (he doesn't necessarily have every one of these effects at once or with every episode.  They vary with each episode)

• Lethargy
• drowsy, sleeps afterwards for a while
• immediately following one episode, his face had a grayish tone
• clumsy, unsteady footing

Our new pediatrician feels that he was previously diagnosed with BHS because he let out a cry.  She feels that this may be an epileptic disorder and his single cry right before this starts is his reaction to a feeling he gets that something is going to happen, and a result of him being to young to know what's going on or to express what he feels.  She also feels that the normal EEG may have thrown off the diagnosis, as many children with epileptic disorders have normal EEG's.  Hopefully we will get answers to these questions very soon, as these episodes are becoming more frequent and severe as time goes by.  Where as before we had breaks with these episodes, we don't anymore.  He has them several times a day (at least 3-4) and passes out.  He is arched so severely that some times it seems he could just break in half.  I was told this wouldn't happen in his sleep...it does.  I was told it was caused by pain or upset, yet there are times when there is no trigger at all.  He has even had episodes preceded by bouts of hard laughter.

After being told that there is a link to the Autonomic Nervous System, and more specifically, the Vagus Nerve, I started doing my own research.  Dr. Kelly, formerly associated with the Southwest S.I.D.S Research Center in Houston, TX, did extensive research on these Breath Holding Spells  and found that a mere 1% of children have a defect with the vagus nerve which cause these "spells" to be severe (vagully mediated breath holding spells).  Some of these children passed away in their sleep.

I am not a doctor, I am desperate.  I hope you can understand my concerns, and my frustration.  I am open, at this point to more testing.  I am willing to travel if it is necessary.  I did some research on different nerves and their purpose and wondered if these nerves might have something to do with it...

• Vagus Nerve-Autonomic Functions
• Glossopharyngeal Nerve-controls some muscles used in swallowing (if the nerve is defective, can these same muscles contract improperly even when not eating, and maybe cause loss of breath and then these episodes)

(**Posthypoxic Myoclonus: caused by prolonged oxygen deprivation to the brain**)?