Breath Holding Spell

I am so glad someone mentioned RAS to you, and the US site is just getting going
http://www.stars-us.org/
but under the case studies you will find the kid's stories that sound familar. (the UK site does as well).
http://stars.org.uk/html/ras.html

In this area, the most aware cardiologist I have found is Dr. Karen Friday at Stanford. You would have to ask her if there are any pediatric cardiologists at Lucille Packard (or Oakland Children's, as that would be more convinent for you) who understand this family of conditions. I was misdiagnosed as an epileptic for 7 years before I got the correct treatment.

GOOD LUCK!

A baby can not do all this to get his way out of something; the rolling of the eyes is worrysome. You may want to go to a specialist and get him a scan (or MRI) whatever he considers necessary to diagnose him. It could be epilepsy.
They usually are lethargic after each episode.
Blessings and good luck.

K.,
I too have epilepsy, and the eyes rolling back in the head
really is a concern. I would get him into his pediatrician
as soon as you can. The lethargy afterwords is also a sign.
W.

Hi K.!

My son was 15 months old the first time i experienced this, and it was terrifying. We spent 8 hours at the hospital while they did a CAT scan and blood tests and hooked him up to all kinds of different machines..... only to tell me "there's nothing wrong with him." I made an appointment with the pediatrician, who referred me to a pediatric neurologist who diagnosed him with Reflexive Anoxic Seizure Disorder.(RAS)

To my understanding, RAS is a non-epileptic seizure disorder. It is often confused with epilepsy, but the medications used to control epilepsy do not work because it is not a brain centered seizure. RAS seizures stem from the Central Nervous System.

Apparently, in a very small percentage of the population, the Central Nervous System is immature at birth. 80% of children diagnosed with RAS outgrow it by the time they are 5, because their Central Nervous System has caught up. Less than 5% continue to deal with it until adulthood.

What usually happens is that the child receives some sort of shock. A dog barked when he wasn't expecting it, he stubbed his toe, the wading pool is too cold, etc..... If the child is already feeling tired, hungry, frustrated, etc, the additional stimulus is too much and the child's Central Nervous System freezes or shuts down for a moment. In a full blown episode (which is my term, I couldn't think of how to describe it) The child will not exhale, will turn purple or blue, will faint, and have a grand- mal seizure. Then the child will recover. He may act tired or disorientated for a little while. Not every episode looks that way. There is not always a seizure and they do not always pass out. The best thing I found was laying my son down in the recovery position. If I did this quick enough at the start of the incident, he did not go into seizure and often did not pass out.

My son is almost six now and had his last episode at 4yrs 8 months. I think he has finally outgrown it, with no apparent side effects.

There is only one group dedicated to research of RAS that I am aware of and they are in England. Recently they added a US chapter. Here is there website: http://stars.org.uk I have emailed with Trudie before and the people there are very helpful and supportive.

Sorry this is so long! What I would do if I were you is get a referral to a pediatric Neurolgist. If he doesn't mention it, ask what he knows about Reflexive Anoxic Seizure disorder. (If he doesn't know about it, he can't tell you if your child has it or not!)

Good luck and feel free to send me a message anytime if there's anything else I can do for you!

I just had to email you, sounds like your husband was in there with him when this happened. My son was with my mom and he did the exact same thing with her, she said he wanted something and she said no and he did the breathing thing and he was upset started holding his breathe and stop breathing, my mom called 911 by time they got there he started breathing, he statrted laughing but my mon was frantic. He's now eleven and he place of the breathing he does other things when he don't get his way.

I don't think this is normal for a nine moths old. I have heard of older childeren holding there breath to get what they want but at nine months i don't think that he is capable yet of doing something like that on purpose. I had a friend whos 6 year old would do that when she did not get what she wanted. She would fait from it but after about 30 seconds she would wake up and be just fine. the only way they got her to stop was by not giving her what she wanted even after she woke up. she even had to pretend that is was no big deal. Her doctor just told her that it was behavioral and that her body would not let her hold her breath so long that it would be bad for her. Hence the passing out.
So i would take him to the doctor just to make sure that there is nothing else wrong. He could have asperated on some spit up and hopefully it well not happen agian. But it is better to be save than sorry.
A.

K.,
Is it possible that your son was having a petit-mal seizure? I don't want to scare you, but from the description of the episode I think it may be possible?
Obviously i would suggest a trip to the doctor. If it was a seizure they may not be able to confirm it, until he has another one.But they can start with some tests.
I hope this is not the case,but from everything you described it sounded like a possibility to me.The eyes rolling back,shallow breathing,feeling VERY tired & kinda confused afterwards. I have had many,many of these types of seizures.Pettit mal seizures usually do not include convulsions,which everyone assumes is what happens during any seizure.They can be controlled with medications.
Good Luck..my thoughts will be with you. Lisa

Hi K.,

I know exactly what you and your husband went through. You described what my husband and I experienced with our oldest son, but he was much younger than yours. The Dr.'s NEVER seemed concerned about the breath holding spells even though we were always distraught.

Only advice I received was to either hold him gently and let him ride it out (very difficult since he became stiff as a board before going limp) or lay him down safely and love him when he comes out of it (how can I just watch? what if it was something more serious?).

I can't even tell you the other absurd info I received because it wasn't helpful to us at all. Friends and family came out of the woodwork and told us all the stories of children they knew that had breath holding spells. I wasn't convinced that it was breath holding spells since my son was so young. I tried what you did -blowing, flicking water on face etc. Most of the time he was going into his spell too far that there wasn't anything we could do to stop it. NOTHING prepares you for the spells. It never got easier for us even though we were experiencing it more than several times a week. Try to pinpoint the triggers. For instance, in the beginning it was mainly the rush of cold air he experienced during diaper changing times or taking too long when he wanted to nurse. Once I discovered this it helped a little to lessen the frequency of his spells.

A friend's son had a different type of episode. Her Dr. recommended videotaping it if possible. My husband and I could never get the courage to videotape my son's spells, but her husband was able to capture one of her son's episode. The Dr. was able to accurately diagnosis her son. We sometimes inaccurately describe what we experience in panic, so the recording helped the Dr. to see first-hand what is actually occurring. Her son did not need meds or further Dr's visits. He is a completely healthy, active, intelligent boy. There's no doubt in her mind that he was diagnosed correctly because they had the recording.

One solace- our pediatrician did constantly reassure us that our son would outgrow it. AND he did! As he got older he also tried to hold his breath to get what he wanted. As a toddler he couldn't get to the point of passing out and turning blue, then purple anymore. He sure tried though! The pediatrician would tell us not to make a big deal about it or become stressed b/c he would sense it and do it more often.

My son is now 7. His birth and pregnancy was extremely easy, but today he has a host of learning delays which NONE of the Dr's would even address during well baby check-ups even though I raised my concerns continually from infant into pre-school age. Thank goodness I insisted on receiving early intervention anyways. He is still a very typical active rambuctious boy in many ways. You and your husband know your son best! So, don't let the Dr's tell you it's nothing serious. Listen to your mommy instincts if you think it's something more serious than breath holding spells and keep seeking medical advice if you're not satisfied with their diagnosis. Blessings and Best of Luck!

If it was just a breath holding spell he'll grow out of it, my daughter just had one and i was so scared she did the same thing your son did, turned purple and went limp, but when she came to she was fine, so hopefully he grew out of it

Hi K.,

I would have to agree with Adrian. When I read your post my first thought was that you needed to see a pediatric neurologist. The fact that your child was wiped out after the episode indicates that it may have been a type of seizure. I am not familiar with RAS as Adrian mentioned, but it sounds very similar to what you experienced. I don't mean to worry you, but your best defense is being informed about any possible condition.

Our son was diagnosed with epilepsy when he was 2, and has been on medication for the last year. While it's very scary, it is manageable if you know what to do and also what triggers to avoid. We too are hoping that he will outgrow this. I would suggest making an appointment ASAP because there is often a long wait to get in to see the doctor. If you're in the Sacramento Area, Child and Adolescent Neurology Consultants are great. Their phone # is ###-###-####. In the meantime, I would suggest seeing your pediatrician if you haven't already. They may have to give you a referral.

I'm sorry that you had to experience such a terrifying episode. I hope that you can figure this out soon so that you can put your mind at ease.

Take Care,
A. C.

Please call your pediatrician to discuss it....your baby may get upset or hurt to where she stops breathing a bit.

My two children have gone through this quite a few times.
It's usually when they get hurt badly. My son will be 5 and has pretty much grown out of it. My ped. has said they grow out of it, and hasn't made a big deal out of it.

I believe it has to do with the vegas nerve. My doc. said that some kids if they don't get a lot of air right away, they can pass out like that.

My 2 1/2 goes through it, if she gets hurt, and a couple of months ago, did pass out. Very scary!! Since she did have a head injury, I took her in. ;She was fine but it scared the hell out of me. Supossedly it isn't a big concern, but it was to me!!! Again, talk to your doctor, but that's probably what it is. The regain consciousness in a few seconds. We console them as much as possible, rub their backs, and talk in a calming voice. We also blow in the face since it can make them stop and take a breath. Good luck!!!

CALL YOUR DOCTOR. And always have 911 come, don't cancel them. I would expect he needed to be seen and checked out. Sounds like there is something that needs medical attention and that he was not holding his breath on purpose.

I am hoping that you get this since my mom forwarded this one on to me. I must have missed it the day it came out. I had an experience with my son when he was three days old. I had heard of Sleep Apnea as my nephew was born with it, but had never seen it. I was breast feeding at the time when he had what they called a suck out. Being a single mom at the time it scared the pee out of me and I was thankful to be living with my mom and grandparents at the time. My grandfather called 911 when he heard me yelling in the middle of the night that there was something wrong with my baby. When the fire department and paramedics got there, my son was breathing again, but like yours, he was lethargic. My grandfather insisted that they take him to the hospital to be checked. They ran a series of tests and did an EEG on him. Needless to say they never found out the cause of his episode. They sent him home with a monitor and me with a crash course in infant cpr. My son had 6 episodes in one night where the monitor kept going off. The monitor was fine, but he was not. Back to the hospital we went and after a week they still did not have any answers. I am telling you this so that maybe you will have your son checked out. From what I have read and heard, SIDS is most common in boys than girls. Be insitant with the doctor until they can find an answer or maybe be able to keep searching for one. I hope that your little one does not do this again as it is scary. My son is now 10 and a very healthy growing boy. My nephew is also a health young man that just graduated from high school. There is hope out there and hopefully in the 10 years that my son had his first episode they have more answers for parents when things like this happen. Good luck to you and your family.

Hi K., This does sound like petite mal seizure. The thing that makes me thinks so is the eyes rolling back. ( 9 month olds do not fake a fainting spell and roll their eyes back in their heads.) Do NOT ignore this. Get him in to see a good pediatrician and make sure that they do an EEG. No matter if they put you off as a first time mother... make them do the test. Yes, it will most likely happen again. But they usually do grow out of them. My daughter had these as an infant and they are quite frightening every time. The good news is that your 9 month old will probably be fine. My daughter is now 38 years old with four boys of her own.
You MUST have him seen for this one though and make sure that there is nothing more and to keep a record of this kind of episode no matter how brief it is.
Good luck to you. Motherhood is not for sissies! Gramma Sun

Get him to the doctor asap!!!

K., that sounded like your baby had a seizure. Report this to his pediatrician and maybe he might be referred to a neurologist. I am also a nurse and have seen kids as well as adults have a seizure like the one you described. It looks like he's holding his breath but in fact it's a seizure.
C.

Never heard of a baby doing this. Get to a doctor asap.

My godmother's son did this years ago. The advice he gave was simple and effective...ignore him! They are doing it for attention and when they get none they stop. I think that it worked itself out quickly after that.
J.
citymommy.com

I'm going through a similar situation with my 10 month old too. The first episode occured last week and since then he's had about 7 episodes. It's very scary each time. Usually it begins with him getting very upset and then he will start crying but no sound comes out for a long time. Then his body will go very stiff and his face turns pale or blue and then he passes out and his body goes limp. By this time I'm frantic and try to wake him up. I know now that CPR is not necessary and that I just have to keep talking to him and wait for him to recover and start breathing again. I took my baby to a baby clinic today for some advice. A midwife suggested blowing in his face like you did, but when I tried it today it didn't snap him out of it - he still passed out. She also suggested flicking cold water in his face to make him snap out of the 'non-breathing duration' and make him take a breath. Your baby is not holding his breath on purpose to gain attention. Sorry but I can't offer you any advice as I need advice myself in how to deal with this situation.

Hi K.,

I have epilepsy, which means I have seizures but under control with medication, what caught my eye is when you said his eyes rolled back. When a seizure accures you don't breath (usually) you can(not always) loose bladder or bowel control, body may or may not twitch, or rigid or stiff, but after a seizure for sure you are lethargic. a neurologist can confirm this for you, I have had this since 1978 and am a mother of two and live a normal happy life so please don't be to worried by my email, if I can be of further help contact me. ____@____.com and if this happens again call 911 and tell them you think your child is having a seizure and make sure there is nothing around that he can hurt himself on if his body were to flail, and let the seizure run its course and try to time it so you can tell the docs and emts how long it lasted. as their brains are deprived of oxygen during a seizure.

take care,

J.

K.,
How terrifying! Does your baby ever spit up? If so, perhaps he was aspirating on some spit-up? I would definitely recommend getting in with your son's pediatrician today. My son was born 11 weeks early, and the NICU nurses taught me to tickle my son's foot if he seemed to be forgetting to breathe (brain wiring isn't always ready that early to keep sending signals to breathe). Apparantly there is some connection between the lungs and the feet. If a baby's oxygen sat would get low, the NICU nurses would first try tickling the baby's feet before more taking more drastic measures. However, these were preemies, not nine month old children. I don't know how anyone who is not a medical specialist (peds, specifically) could assure you that you will not go through another episode like this. Please get your child to the doctor today, even if that means the ER. I know that babies leaving the NICU who still experienced the occasional non-eating related apnea were sent home with monitors. Please do not take any chances with this.
K.

I agree with the other moms - get him to a doctor.

My younger daughter went through the breath-holding phase but she was older (around 2 years) and was doing it as a form of tantrum. It doesn't sound like that is what your son was doing! I think you should definitely speak with his pediatrician about this today. Good luck and please let us know what happens.

I am a NICU nurse and am wondering if maybe he has reflux?!? I would check with your pediatrician and see if they can do a reflux test or upper GI to look for reflux. Maybe even start him on some reflux meds to see if that helps. Most babies outgrow reflux, so this is hopefully temporary. It is not uncommon for babies to arch their backs and hold their breath when they are refluxing. How scary for you!

Good luck,

Jen

I've heard of babies not breathing while extremely upset, they will scream so long that they will pass out and then start breathing again. But this does not sound like the case with your child. Go to the doctor to get a diagnosis, it sounds like there may be something more serious going on here. My friend's daughter passed out from screaming while in my care (she had wiped out while running and had a bad owie) and she did not turn blue before she passed out. Also, she wasn't lethargic once she started breathing again, in fact, she carried on crying (just less intense than before) for about ten minutes. I would definitely have your child checked out by his pediatrician. If you call and tell them what happened, I am sure they will be able to get him right in. Good luck. That must have been so scary.

My daughter's heart stopped as well as her breathing when she was about 18 months old. It was awful. Lots of tests were done on her at the E.R. They thought she had a seizure. She was placed on phenabarbital. I wasn't satisfied with the answers so we were referred out to Oakland's Children Hospital where a battery of tests were done, some fairly invasive. The doctor in Oakland diagnosed her with Infantile Breathe Holding. I was able to take her off of the medication, however, she still had to be watched for more episodes as she could hurt herself when she loses consciousness. My daughter is now 4 1/2 years old. Her episodes appeared to always come in clusters of two or more within a few days. There was always a triggering event, i.e. she fell. I always knew it was going to happen at times she wasn't feeling good and was overtired. My instructions to any other caregiver was that she was to be treated as one would an epileptic. In other words, never allow her to be near water unsupervised, watch her carefully on climbing structures. The fear being that she could really hurt herself if she were to lose consciousness. Most importantly, it was important no to overreact. My other children would freak out thinking she was going to die. I had to learn to be very calm and merely place her in a safe position on the ground and talk to her until she regained consciousness. She was never out very long. The best news is that I was told initially she would outgrow this condition and she has not had one episode in almost one year. Again, get to know what brings on the episodes, make sure you are satisfied with the diagnosis (internet is a great tool), and inform all caregivers of the problem and instruct them on how to handle it. Also, I learned that I could actually talk her out of an episode if I caught it early enough. I am so glad I did not accept the first diagnosis of epilepsy and I explored further. She has never required medication since I took her off of the first phenobarbital prescription. I hope my experiece has been somewhat helpful.

My son used to do this, he is now 28. The more attention you give him the more he will do this. When he is doing this keep calm, make sure he is laying so that his tongue won't block his airway, I used to just flip him over my lap and gently pat his back. I immediately took him to the pediatrician the first time he did this and it's something that some children do, but if you give him too much attention it will only get worse and become a dangerous situation.

I think 9 months is too young for a baby to hold their breath because they're mad. I think it would get too uncomfortable and they would stop.

I'd take him to the pediatrician ASAP.

K.-
How horribly scary. I agree that a visit to the doctor is needed ASAP. One other idea to discuss with your doc though . . . my son (4 mos) has bad reflux, and twice now he has spit up and choked, stopping breathing one time much more severe than the other. He turned blue, I did all the things you describe, back blows etc., and he started breathing again. We took him to th ER after a phone consult with our pediatrician, and they say apnea can happen in kids with reflux. He was in a lot of pain and was screaming and writhing after. Not lethargic at all. Sounds like your situation is different, but it might be worth asking for a rule out. Good luck. It is so frightening when you love them so much and feel so helpless. Let me know if you need support.

I'm not sure if this helps, but a friend of mine's little baby used to hold his breath too. She would squirt cold water in his face to get him to take a breath in again. Oh BTW, she was also a nurse, so... :)

Good luck finding a solution!
A.

You should definitely take him to the doctor right away. This sounds serious and scary.

Hi K.,

While I am not familiar with the aforementioned "RAS", your description of the episode sounds like seizure activity may be involved. If you haven't already had him checked out, I would. Good luck and I hope you never have to go throught that again!

Hi K.,

Your son definitely was not holding his breath. When a child holds his breath, the body's defenses kick in and the child faints. Once the child faints, breathing returns to normal. When the child wakes from the faint, he is back to normal. (Normal breathing, normal energy level.)

Take your son to his pediatrician, asap.

K.