reflex anoxic seizure

i'm almost POSITIVE this is what hayden has....guess we'll find out!


What is a Reflex Anoxic Seizure?

Reflex Anoxic Seizures (RAS) occur mainly in young children but can occur in adolescents and adults. Any unexpected stimulus, such as pain, shock or a fright causes the heart and breathing to stop, the eyes to roll up into the head, complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After 30 seconds the body relaxes and the heart starts beating, the sufferer is unconscious. One or two minutes later the person may regain consciousness but can appear to be unconscious for over an hour. Upon recovery the person may be very emotional and then fall into a deep sleep for two to three hours. RAS is often misdiagnosed as simple breath-holding or more seriously as epilepsy.

What causes RAS in children?
Reflex Anoxic Seizures are caused by the vagus nerve being over stimulated due to an unexpected stimulus such as pain/shock/fear. It is not known why this should happen in some children.

Does the person's heart stop during a 'near-miss'?('near-miss' refers to an incident when the person stops breathing after a fright or other stimuli, but starts to breathe again before consciousness lost.)
The heart tends to slow down briefly rather than stop during a 'near-miss.'

Will the heart weaken through time?
No, a RAS attack puts no strain on the heart.

Placing the child into the recovery position immediately after the fright or other stimuli and before loss of consciousness seems to lessen the severity of the attack, or result in a 'near-miss'. Is there any medical foundation for this?
This does seem to be the case, although the doctors are unsure why. It should be noted that the person does not always have to be placed in the recovery position. (possibly it reduces the effect of the drop in blood pressure which occurs after the heart stops).

Does a RAS attack cause any damage to the brain, short term/long term?
There is no evidence whatsoever that RAS causes brain damage, The 'fail safe' mechanism in the brain restarts the heartbeat and breathing before the oxygen level is low enough to cause damage.

If the cessation of the heart beat and breathing continues beyond the child's normal reaction time at what point should resuscitation be attempted, and how should this be administered?
It would be extremely unlikely that resuscitation would be needed, because of the 'fail safe' mechanism (see #7 above). However, if the person's heart and breathing has not restarted after a period of two minutes, then, attempting resuscitation in the normal manner would do no harm.

When do children grow out of attacks and what percentages of children continue attacks after school entry age?
Children's attacks tend to lessen as they get older, but they may never 'grow out' of them fully. Unpublished data shows that 75% of children 'grow out' of RAS at around school age; however 1 in 4 continue to have attacks less frequently and less severe.

Why do some children regain consciousness after an attack quicker than others do?
Children are very different in their ability to recover from attacks, partly because of the severity of the attacks, and partially due to their own body's reaction to the attack.

Can a RAS attack occur while the child is sleeping?
Probably not, however there are other heart stopping conditions, notably Prolonged QT Syndrome which do occur during sleep, and while awake especially with exercise. Prolonged QT Syndrome can be diagnose using an electrocardiogram (ECG), and parents are encouraged to have this done, to rule out this diagnosis.

Why does a RAS child have more attacks when with parents?
There ore two theories, one that the child has most attacks as a toddler. A toddler spends most of his/her time at home with a parent. Another theory is that the child feels more relaxed in his home environment, they are not anticipating a fright, and will therefore be more likely to have a RAS attack because the fright was unexpected.

What are the problems facing a RAS child during anaesthesia?
The vagus nerve can be stimulated to produce a RAS attack by pressing the eyeballs (the ocular compression test) and, in anaesthesia when the tube is pushed down the throat. If the person is anaesthetised lying flat, after being given a pre-operation dose of atropine, there will be no further complications. Complications arise where, particularly in dental anaesthesia, the RAS sufferer is anaesthetised sitting up. The intubation causes the RAS attack, and because the body is upright the blood falls to the legs. When the 'fail-safe' mechanism restarts the heart the lack of blood in the heart could cause a cardiac arrest. Complications, including brain damage could then ensue. The advice is always tell the anaesthetist that the child or adult has, or did suffer from RAS, and insist that all anaesthesia is administered while the patient is lying flat.

What does the RAS child feel and experience during the stages of an attack?
A few older children have been able to describe what they experience during an attack and mention that voices sound far away, but that it felt nice. They also say that it is not pleasant coming out of an attack back to consciousness.

Is there a genetic factor in RAS?
Almost certainly. More research is needed to establish what gene actually carries the susceptibility to RAS.

Will my son pass RAS onto his children?
It is quite possible. It is now known that RAS and fainting episodes like RAS can run in families.

What can I say to a child to comfort them during an attack?
It does seem to help to talk to your child calmly and reassuringly during an attack as it would appear that they are aware of at least the sound of voices.

Why does a child with RAS cry for hours after an attack?
Doctors are unsure. It could be due to chemical imbalance in the body after a period of anoxia, or might be due to the child's experience as they come out of the unconscious state. Perhaps the child's subconscious is coping with the emotion and shock of the seizure.
Can a RAS attack be controlled, once the child has experienced a fright or other stimulus?
The child has no control over the process. Some parents find, in the early stages they can avert the attack, by a combination of reassuring the child, talking and placing them down in the recovery position or blowing in their face. Different children respond differently. (In older children biofeedback techniques might be useful)

Any advice on how to cope day to day with family life and a child with RAS?
It is important for the child with RAS to lead a normal healthy life, however, adults in charge of the child at any given time should be aware of the child's condition. Contact the RAS Support Group for further information and advice.

A parent has been advised not to cuddle a child during an attack and let them come round themselves. Is this good advice?
The best advice is to have the child lying in the recovery position (lying on their side), speaking calmly and reassuringly to them, with physical contact (rubbing child's back, patting their arm). Your voice should sound calm and reassuring.

Why does a child's face during a RAS attack go white and not blue?
During a RAS attack the heart stops beating, and breathing stops. Blood vessels constrict and the blood is not able to get to the skin. This results in white pallor to the face. The blood is lacking in oxygen and will be blue colored only noticeable on the lips in the early stages of the attack. During a blue breath holding attack lack of oxygen from the lungs causes blood to turn blue. However, as the heart is still pumping, this 'blue' blood passes through the blood vessels of the face, causing the whole face and the skin of the body to have a blue tinge.

Why does a RAS child sleep for so long after an attack?
Unsure. It is probably the brain recovering from the shock of the attack. During a RAS attack the heart stops beating for normally 5-30 seconds, after about 9-10 seconds lack of blood supply to the brain makes the normal electrical activity in the cerebral cortex (the thinking, conscious part of the brain) turn off. When the heart starts beating again, the cerebral cortex comes on again but is sleepy for up to a couple of hours, as it gets over the 'shock'. This does NO damage to the brain.

What triggers an attack in later years?
Stimuli in later years often differ from the bumps and falls of a toddler with RAS. They can include trapping fingers, stubbing toes, sight of blood etc. Long term research is needed to discover what other stimuli causes these attacks.

What makes the heart restart after an attack?
As the oxygen level decreases in the brain, there is a chemical release (the 'fail-safe' mechanism), which induces the heartbeat and breathing mechanisms to restart.

How does an epileptic attack differ from a RAS attack?
An EEG (brain wave activity) of an epileptic attack would show excessive elective spike or epileptic discharges, which are not present in a RAS attack. During a RAS attack the EEG goes slow for a few seconds then is flat as the cerebral cortex shuts down, then goes slow again during the drowsy recovery phase before returning to normal. A RAS attack is always precipitated by a shock trigger, which is sometimes difficult to identify.
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40. What can be done to prevent a child having attacks?
Prescribe Atropine Sulphate, Atropine Methonitrate or similar medication (iron therapy might help in some children). Unfortunately these medicines do not always work. People with frequent and severe attacks in whom medical treatment has failed or is declined, could be fitted with a pacemaker.

poor hayden's week of episodes pt II

so they sent a tech up to attach the EEG electrodes and he began attaching them. hayden was screaming and passed out at LEAST 8 times during the hour long process for a couple seconds each time. i called for a nurse and they sent the dr in. she asked who witnessed it (that was the first question she asked as tho she didn't believeme!) and then left. a nurse didn't even stay in the room to help if it happened again! so after he was hooked up and after all those episodes, he fell asleep. the test was supposed to be 2 hours long but since he was asleep, they wanted to leave him on it for 24 hours so they could get awake and asleep. they said they noticed he only had episodes when he was awake, so they wanted plenty of awake recording. after a miserable night of tossing and turning for him and arguing with the nurses for me, we began a new day. he was furious about having little room to move and with all the electrodes on his head, it was hard to play! the electrodes were glued to his head and he kept pulling at them, ripping patches of his hair out. he was miserable and they had plenty of awake reading, so i asked them to take him off. they decided they wanted to leave him on until he had an episode and who knew how long it would be before that would happen!

a bit later, we were cuddling on the fold out chair in his room and i changed his diaper. he was laying on hisback and i was tickling him. then he went limp again. this time his eyes just went blank instead of rolling back. he stopped breathing and i started screaming for the nurse and yelling his name trying to get him to wake up. i started hitting his chest trying to jar him awake, but it wasn't working. finally, he started to come to again. i was so relieved they finally caught an episode on EEG and they had even set up a video camera in our room so it was on video too! i paged my nurse and they unhooked him from the EEG and sent the results off to be downloaded. he slept for hours again after this episode. the neurologist finally came up and sat me down to talk.

he explained to me that hayden definetely went limp suddenly and the monitors showed his heart rate immediately dropped from 140's down to the 80's at the exact same time. they said he wasn't breathing for around 20 seconds and that there was some abnormal marks on his EEG. they said that after a year old, a baby's brain will have waves simultaneously on both sides, but that haydens was having waves isolated to one side at a time. he said there were some unexplained marks, but that none of these things had anything to do with his episodes. now here's where it all gets utterly ridiculous! he told me they were diagnosing hayden with breath holding spells. they said he feels neglected andunloved and that he's holding his breath for attention and making himself pass out so that i will rescue him. putting a lot of stock into a 20 month old, huh? and doesn't make sense because my son is a very happy and well adjusted baby! he also had my full attention and was cuddled during EVERY attack except the two he had in the car. he didn't hold his breath either before he passed out. he went limp and stopped breathing at the exact same time! but they reccomended i take him to a child psychologist to help him deal with his feelings and give in to everything he wants. they said don't let him cry or get upset. and here's the scariest part...they said if he has another episode, i was supposed to lay him on the floor and don't look at him or talk to him or touch him! let him lie there for 2 minutes because if i give him attention for doing it, he will keep doing it!!! i can't for the life of me think of a dumber idea than that!

so they sent us home and we haven't had another episode since then, but I was so terrified because i KNEW that wasn't what was happening, i began to do some research online. i found this seizure disorder called RAS that fits so perfectly all his symptoms and even says is commonly misdiagnosed as simple breathholding. i called the dr and we have an appt tomorow to see what he thinks and to get a referral to another neurologist. so that's our saga and hopefully we can get some real answers soon!

poor hayden's week of episode pt I

poor hayden has had quite a week! on tuesday, I had to take adriana to the ENT to talk about getting tubes in her ears, but I had noticed that hayden wasn't quite himself. he was crabby and runnign a low temp so i made him a appointment with our pediatrician and asked my sister to take him. she called me and said he had an ear infection. heprescribed an antibiotic and sent him home. when i got home that night, he was even more crabby and whiny. he was up all night miserable. he began throwing up the next day and couldn't keep anything down. he hadn't had any wet diapers, so i took him back to the dr. he fit us in at the last appointment of the day and said if he wasn't any better by the morning, call over and we'd get him admitted to the hospital for IV fluids.

we got home and i was rocking him. whitney stopped by and i tried to get him to stand up to show her how miserable he was, but i realized it had gotten so bad that he couldn't even stand. i was rocking him to sleep when all of a sudden, he passed out. his eyes rolled back into his head,he went limp and stopped moving and breathing. i started yelling at him and slapping his cheeks trying to get him to wake up. he was out for about 30 seconds before he finally woke up and started crying. we loaded up and i took him to the emergency room. the doctor there called our pediatrician and they decided to send him to iowa city for testing, just to be safe. theycalled it an ALTE (assumed life threatening event). they loaded him into the ambulance and daddy rode up with him, with me driving behind.

we made it to iowa city's university hospital and they looked in his ears and said 'yup, he has an ear infection!' he was fine and happy and even jumping on the bed for a while. hours later, we were STILL waiting for the drs. the nurse was in the room and he was tired and crabby again, so i was rocking him on my lap. he was fussing and all of a sudden passed out again. it happened the exact same way except it only lasted about 6 or 7 seconds this time. the nurse yelled for the dr, but he got in there just as he was waking up. instead of examining him, he turned around and walked back out. another cpl hours later, another dr came back and said we could stay overnight for observation or we could go home with a nasal spray to give him if his 'seizures' lasted longer than 5 minutes. they told me his 1st episode was a febrile seizure and his 2nd episode was just him passing out from crying so hard, which was ridiculous because he wasn't crying very hard at all. i asked if we could stay without a saline lock and she said should would ask the other dr. she came back in and said that they were just going to go ahead and send us home after all. i was furious, but off we went. about halfway home, we decided to stop forc offee since it was about 3 am, and we were exhausted. daddy went in to get it and i noticed i didn't hear hayden breathing. i looked back and sure enough, he was passed out again. i smacked his chest and he started to come back to. i realized they hadn't given the prescription they had said they would and i was so mad that they sent us home that i called the U of I hospital back. the drs who had treated him had just gone home (convenient, huh?) so I spoke with another dr. she said she didn't understand why they sent him home without seeing a neurologist or doing an EEG and offered us to come back up. i told them no thank you, we would be finding a different hospital who took us seriously.

we made it back home and went back to the pediatrician first thing in the morning. we explained exactly what had happened and she was just as angry as i was that they sent him home with absolutely no testing. i felt a rush of relief that someone was on our side. she told me to take him to peoria that day and gave me a note to give to the ER dr describing what happened. she told me not to leave until they gave him an EEG an EKG and a consult with a neurologist. so we loaded up and headed out, just me and hayden this time. daddy stayed home to watch the girls. once again, i noticed i didn't hear him breathing so i turned around and he was again unconcious. i slammed into park on the bridge and reached back and smacked him again. it took a few seconds but he began to come to. we hurried up to peoria and after hours and hours and hours in the emergency room, were admitted. we met with the drs and they took a full history and i described all that happened. they hooked him up to a heart monitor(like the one he was on as a newborn) and watched that overnight. he didn't have any episodes while on the monitor, so the next day, they wanted to send him home. they told me he had been simplyholding his breath and passing out and that it was common. i wasn't convinced but after a great deal of arguing, i agreed to go home, but asked for him to be sent home on a heart monitor for a week so that if it happened again, i would know (in case he was asleep or in the other room) and could get to him. they refused and pretty much told me to suck it up. i realized they were trying to send me home without doing any of the 3 things my dr had requested they do and i knew darn well he wasn't holding his breath and then passingout because he didn't quit breathing until he went unconcious! so i called hayden's pediatrician and he finally convinced them to do an EEG and get him a consult with the neurologist.

and here we go!

today was a rotten day. had some very crabby babies. hayden cuddled with daddy this morning watching cartoons. it was an adorably rare occurance that he can hold still long enough to lay together like that. they certainly looked sweet tho. miss addie was a ball of sass and didn't want to share her mommy today. all of a sudden, pushing has become acceptable to them. the twins have begun wrestling with eachother. it's too freggin cute, but scares me half to death that someone will get suffocated or break an arm. especially considering hayden is a good 8 lbs bigger than addie! i think they are all 3 getting sick again. adriana is pulling at her ears (can't wait for our appt with the ent on the17th!), hayden is super crabby, and trinity is sleeping a lot.

adriana decided to feed the baby her baba today. what a big helper. she also tried to put a pair of socks on trinity while she sat in the bumbo. trinity was a good sport about itall. i can't wait until they can play dollies and stuff together.

trinity has decided that instead of going to sleep at night while i bounce her in her bouncer, she is going to lay there looking at mommy and laughing. little stinker already knows exactly how cute she is!

hayden has a new obsession with light switches. he can climb on the the back of the sofa and turn the living room light on and off. he thinks this is hilarious. daddy does not. haha. he is learning new ways around things. i was switching laundry in the laundry room and since he knows he isn't allowed past the doorway, he laid down on the floor in the doorway so his bottom half was in the hallway and his top half was in the laundry room and was rubbing his hands on the carpet laughing at me, so proud to have beaten the system!

miss addie has been wearing daddy's crocs all around the house today. nevermind the fact they are as long as she is almost! she's so proud to wear 'big people shoes.' i can't wait until she gets her new dress up shoes for christmas. she will be the kind of girl who wants to wear them everywhere.

both of the twins packed their book bags on wheels with 'necessities' (old cell phones, fake keys, sunglasses, pretend lipstick for addie, and a baby mp3 player for hayden) and ran around pushing them in the kitchen saying 'bye mama! bye!' it doesn't get any more precious. i can't to meet my little trinity's personality, but for now i will enjoy all my baby cuddles she will give me!

guess it wasn't such a rotten day after all....more like a gift from God!

a reason to begin

Hayden comes up to me, holds his arms up and says, "Mama, kiss!" I pick him up, amazed at how sweet my little boy is (when did he go from baby to little boy?!?), and then I rememer, WEREN'T YOU IN TIME OUT?!

Those sweet and funny little moments are slipping by me oh so fast. I can't truly remember how tiny they were when they were born. I can only remember snapshots of moments. I'm so busy and when I have a chance to sit down and think about it all, I realize how much I really want to document all these things so I have them to forever read and reminisce.

I don't know how often I'll be able to blog, but will try to update every chance I get. This will also be a great way for Daddy to log on and see what his kids are up to while he's deployed overseas next year! So, I may not get to it everyday, but I promise to stay dedicated!