Stop Breathing Episodes

Michelle - posted on 11/24/2009 ( 15 moms have responded )

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my 4 month old stops breathing at times for no known reason he has reflux and was hospitalised at 4 weeks for testing but the brain scan was clear for syndromal/ or seizure type activity. When I asked what i should do if he stopped breathing again the doctors response was .. ."Whatever" do what u did last time!

I was hoping that it would abate with age but it seems to be happening more often especially when we are in the car or out shopping. I don't leave him to cry because he seems to gag on his own tears and then just stops breathing and becomes unresponsive. It also occurs without crying when we notice that he has just quietly stopped breathing in his sleep. Sometimes he turns purple other times there are no signs other than the lack of chest rise and fall, we have a sids monitor and have had to use resuscitation methods on several occasions .. it's not not like when they just hold their breath for a time and it's really worrying me.He also gets thick clear mucus plugs that come away after these episodes but not at every incident. The doctors say he isn't congested but at night his chest rattles.

Has anyone had a similar experience with their child or with these symptoms?

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[deleted account]

this sounds like asthma. i am no expert but the chest rattles and mucus sounds so familiar to me my friends son was like that she had to keep at the doctor i mean hound him till the eventually diagnosed him with it.also my nephew has this and again very familiar.i cant say the ever stopped breathing but say it to your doc.was hes heart checked for murmur.id keep pressing the docs to find out what this is.good luck to you all.keep us posted tanx:)

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Jessica - posted on 12/03/2010

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Wow that is so scary and I'm sorry you have to go through that! My daughter had an episode the other day that was seizure-like as well. She had very shallow breathing. They are saying it's reflux as well.. I think your situation sounds more severe and my personal opinion is that you should get another doctor's opinion...it seems to me that they are missing something. I will pray for your lttle guy.

[deleted account]

Hi Michelle



Some info that may or may not help.



Not sure where you live but if in the Hunter, a highly recommended Paed ENT is Dr Paul Walker (NPH) & Paed Sleep Specialist is Dr Bruce Whitehead at John Hunter Hospital (JHH). My daughter was born with central brain sleep apnoea & would stop breathing too & they apparently grow out of that condition between 1-2yo.



I first noticed the breathing problem when she was 1-2wks old however the monitor didnt start sounding until around 3-4wks old, she would stop breathing in my arms then take a big breath & breath fast for a while. First sleep study at 6mths old, 2nd at 14mths old, dramatic improvement between tests.



They initially found a heart murmur but was found to be innocent & many middle ear infections but unrelated, she had an electrocardiogram & lung/chest xrays. Central brain apnoea is where the entire body stops (brain forgets to tell the body to breathe) whereas obstructive sleep apnoea is where there's an obstruction stopping them from breathing (eg: tonsils/adenoids) but the rest of the body continues to function.



I can highly recommend the Angelcare Sound & Movement Monitor - google it.

I hope they get to the bottom of this asap.



Regards

Michelle

[deleted account]

Quoting Michelle:



Quoting ashie:

this sounds like asthma. i am no expert but the chest rattles and mucus sounds so familiar to me my friends son was like that she had to keep at the doctor i mean hound him till the eventually diagnosed him with it.also my nephew has this and again very familiar.i cant say the ever stopped breathing but say it to your doc.was hes heart checked for murmur.id keep pressing the docs to find out what this is.good luck to you all.keep us posted tanx:)





..I had asthma all through my childhood and my first instinct was that these symptoms could be the onset of asthma. We've been to two doctors and back to the hospital but still nothing diagnosed, they say maybe its apnea maybe its just the reflux. Doctors don't seem to hear chest rattles though its quite obvious to myself and others. I think they are initially distracted with the uniqueness of his"little ear" problem and not taking us seriously with this. I have been reading up on his ear condition Atresia/Microtia and it seems that in some instances children with this condition can also have abnormalities of the throat and palate. They did check his cleft and palate at birth but only briefly, so I will be persistent with diagnosis until i get some answers and hopefully treatment to help him cope with this.






It helps to have feedback from others to find "possible causes" for these incidences that i can bring to the doctors attention so thank you for contributing.



 



 



hi again Michelle your very welcome.i also did some reading up on your sons ear condition & you are 100% right i feel too you should get the mouth checked and nose too looked at even though i read with just the ear condition breathing can be affected and if he has a problem with his plate and throat this to would cause the stop breathing episodes.Find a good ears,nose&throat specialist..keep  being persistent your doing a great job and i hope this is resolved soon for you all.best of luck.





 

Leanne - posted on 11/25/2009

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my daughter was 6 weeks premi she had quit beathing MANY TIMES and they called it "brain apnea" which is when the brain shuts down and they are "brain dead" and stop breathing what the nurses did for her was flick her her foot it would bring her "back" This is a very scary thing and trust me I know! when they finally sent her home on xmas eve they offered me a machine and all it would do is wake me to know she has quit breathing but i could do nothing so think about allergies, for my daughter it turns out she was allergic to my breast milk. that is what they documnented it as so i would recommend getting allergy tests to EVERYTHING including breast milk to any baby food and dairy products. hopes this helps :)

Renae - posted on 11/25/2009

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Hi Michelle, sorry everyone this is going to be a very long post.



Have you tried contacting any of these people? Sorry you have probably done heaps of research so sorry if I'm telling you things u have already tried. If they can't help maybe they can recommend which doctor you can see?



Bosch Institute

Sids and Sleep Apnoea

Associate Professor Karen Waters

E: karen.waters@bosch.org.au

T: +61 2 9845 3441

F: +61 2 9845 3396

D06 - Blackburn Building

The University of Sydney

NSW 2006 Australia



Ritchie Centre for Baby Health Research

Contact: Acting Centre Director Dr Philip Berger

Tel: +61 3 9594 5474

Disease Areas: Sudden Infant Death Syndrome (SIDS), Down syndrome, chronic lung disease in premature infants, sleep apnea, obstructive apnea

http://www.monashinstitute.org/baby-heal...



Australasian Sleep Association

www.sleep.org.au



Country/State NSW

City/Suburb Darlinghurst

Name of Clinic Sleep Disorders Centre, St Vincent's Hospital

Consultant(s) Dr C Seton

Phone No for Appointment: 02 8382 6829



Country/State NSW

City/Suburb Edgecliff

Name of Clinic Sydney Children's Sleep Disorders Clinic

Consultant(s) Dr A Teng

Type of Service Sleep physicians

Sleep Laboratory Facility No

Phone No for Appointment: 02 9328 2199

Public/Private Public & Private

Special Areas of Interest Paediatric respiratory & non-respiratory sleep disorders, including behavioural and circadian problems, parasomnia



Country/State NSW

City/Suburb Newcastle

Name of Clinic Paediatric Sleep Unit, John Hunter Children's Hospital

Consultant(s) Dr B Whitehead, Dr J Hilton

Type of Service Sleep physicians

Sleep Laboratory Facility Yes

Phone No for Appointment: 02 4921 3935.

Public/Private Public

Special Areas of Interest Paediatric sleep disorders



Country/State NSW

City/Suburb Children's Hospital, Westmead

Name of Clinic Bandaged Bear Sleep Clinic

Consultant(s) A/Prof K Waters

Type of Service Sleep physicians

Sleep Laboratory Facility Yes (David Read Sleep Unit)

Phone No for Appointment: 02 9845 2525

Public/Private Public

Special Areas of Interest Respiratory disorders, respiratory failure, airway abnormalities, infant lung diseases, sleep disordered breathing, respiratory complications of neuromuscular conditions, circadian rhythm disorders of childhood, narcolepsy, parasomnias



Country/State NSW

City/Suburb Potts Point, Sydney

Name of Clinic St Luke's Hospital Complex (Sleep Lab)

Consultant(s) Dr A Teng, Dr G Thambipillay

Type of Service Sleep physicians

Sleep Laboratory Facility Yes

Phone No for Appointment: 02 9314 7255 or 02 9328 2199

Public/Private Private

Special Areas of Interest Paediatric respiratory & non-respiratory sleep disorders, including behavioural and circadian problems, parasomnia





Country/State NSW

City/Suburb Randwick

Name of Clinic Sydney Children's Hospital Dept of Sleep Medicine

Consultant(s) Dr A Teng

Type of Service Sleep physicians

Sleep Laboratory Facility Yes

Phone No for Appointment: 02 9382 1210

Public/Private Public & Private

Special Areas of Interest Paediatric respiratory & non-respiratory sleep disorders, including behavioural and circadian problems, parasomnia





Country/State NSW

City/Suburb Consultations: Kogarah, Randwick, Liverpool, Stanmore. Sleep Studies: St George Private Hospital Kogarah, Sydney Children's Hospital Randwick

Name of Clinic Children's Sleep Medicine Service (CSMS)

Consultant(s) Dr J Papadopoulos

Type of Service Sleep physicians

Sleep Laboratory Facility Yes

Phone No for Appointment: 02 9553 1033

Public/Private Public & Private

Special Areas of Interest Sleep, behaviour and learning in children; developmental delay and disability; circadian rhythm disorders; non-invasive ventilation





Country/State NSW

City/Suburb Children's Hospital, Westmead

Name of Clinic Bandaged Bear Sleep Clinic

Consultant(s) A/Prof K Waters

Type of Service Sleep physicians

Sleep Laboratory Facility Yes (David Read Sleep Unit)

Phone No for Appointment: 02 9845 2525

Public/Private Public

Special Areas of Interest Respiratory disorders, respiratory failure, airway abnormalities, infant lung diseases, sleep disordered breathing, respiratory complications of neuromuscular conditions, circadian rhythm disorders of childhood, narcolepsy, parasomnias

Renae - posted on 11/25/2009

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Quoting Michelle:



Quoting Renae:

  I don't think your baby has been thoroughly tested enough. You absolutely need more help than what you received in hospital. Please get a referral from your GP to a paediatrician who SPECIALISES in these sort of disorders. You could also prepare yourself by renting a breathing aparatus to keep at home (safer and easier in an emergency than mouth to mouth), but you have probably already thought of that since you have had to resuscitate before.





We have been to two doctors, back to the hospital he was born at, and to two paediatricians and an ENT who all seem preoccupied with my sons Atresia(missing ear canal) and Microtia(unformed ear) because it is a rare condition, but they have failed to address his others medical needs. In northern NSW there is only one ENT specialist and he comes across in a manner of "making decisions" for us without informing us of all available treatments.  I'm unsure of what "breathing apparatus" your referring to, I have a nebuliser from my asthma years but i can't see how that would revive him . However I've had this suggestion before and i will be asking about supply of breathing apparatuses and apnea monitors. We haven't been offered anything so I will be actively seeking Diagnosis via referral to Brisbane Mater Hospital. Thank you for your response :)





Hi Michelle,



I am glad you are in Aus, I had assumed you were in US, which means if I try to find out where to get a breathing thing that I was talking about then the info will be applicable to you. Sometimes its harder to help when people are in other countries. I'm sorry I don't know what the thing I'm talking about is called. There are different ones, electronic that you plug in, put a mask over your baby's nose and mouth and it pumps the correct amount of air into baby's lungs at the correct rate, there are manual ones where you count and pump the air in at regular intervals. I was just imagining having to give mouth to mouth to my own baby and it terrifies me and I would be so scared I would have trouble focusing on the amount I was breathing in and counting in time. A machine would eliminate any human error. Yes definately get hold of a sleep apnea monitor. I will ask a friend who should know what I'm on about and post again later today. My experience with doctors at "one of the best children's hospitals in the world" ...apparently... is that they don't know a lot about infants, even in the special infants ward of a childrens hospital. I once had a young doctor suggest that my anxiety (I wasn't normally anxious, on this occasion I was frustrated beyond belief with this doctor!!!) was causing my baby's feeding disorder, not the abdominal pain that they couldn't find a cause for. There is nothing more frustrating than a week in hospital to be sent home with "we don't know, so we are going to diagnose him with Transitional Colic and wait for him to grow out of it".



I'm sure there are a few sleep clinics in NSW, is it worth a stay at one that specialises in medical sleep issues? They should be able to refer you (and get you in) to someone who deals specifically with your problem I would assume. I will see what I can find out for you. There must be someone in NSW who knows what is going on and has seen it many times before, the trouble is finding that person! It took me 6 GPs and 5 peeds to find one who knew what was going on and had heard my story many times before, he was also much older and obviously very experienced in baby's with pain and related feeding/sleeping issues. I will post again later hopefully with something useful! All the best.

Michelle - posted on 11/25/2009

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Quoting Sara:
 If he's sleeping in a crib, you might want to try having him sleep with someone -- babies actually can learn to regulate their breathing better with an adult as an example. As for the mucus, you can try putting a drop of eucalyptus essential oil under his nose or putting in a humidifier or in his bath water to release the eucalyptus in the the air. Try also adding Gripe Water in his bottle if he's bottle fed at all. Gripe Water has grapefruit seed extract in it which is antibiotic, antifungal, anti-protozoan, and antiviral, so if anything immune system related is the cause, that should help fight it. You can also take grapefruit seed extract yourself if he's not formula fed to clear out anything that you might be passing on to him as well. Best of luck!


hi sara, khaidyn sleeps with me at night it's just too distressing otherwise and this way i am attuned to his episodes and able to provide help alot quicker. I've tried everything from rubbing his feet chest back and neck with eukyrub,(diluted of course)  but have been advised by health clinic not to use eucalyptus in humidifiers as this can dry the airway too much and saturate their lungs with too much chemical.. because when i did try it he started choking and gagging and i only used a drop.



We've used Gripe water, infants friend,  and Infant Gaviscon to thicken /line stomach before and after breastfeeds and in expressed feeds to prevent reflux ..which gave him acidic dihorrea and burnt the skin off his anal area. I have his matresses and carseats propped up to help with the reflux, breastfeed him in a sitting up position, make  his solids myself with breastmilk or boiled water to a thinner consistancy to aid digestion and retention, otherwise he gets constipated and/or regurgitates the better part of his meal.. and he refuses to take farex or formula to thicken feeds.



The reflux is improving he doesnt project up quite so bad as before but the breathing episodes are becoming more frequent so i really don't think they are related. The only relief he gets is the physio i give him daily to help loosen mucus.  I'll keep you posted :)

Michelle - posted on 11/25/2009

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Quoting Renae:

  I don't think your baby has been thoroughly tested enough. You absolutely need more help than what you received in hospital. Please get a referral from your GP to a paediatrician who SPECIALISES in these sort of disorders. You could also prepare yourself by renting a breathing aparatus to keep at home (safer and easier in an emergency than mouth to mouth), but you have probably already thought of that since you have had to resuscitate before.


We have been to two doctors, back to the hospital he was born at, and to two paediatricians and an ENT who all seem preoccupied with my sons Atresia(missing ear canal) and Microtia(unformed ear) because it is a rare condition, but they have failed to address his others medical needs. In northern NSW there is only one ENT specialist and he comes across in a manner of "making decisions" for us without informing us of all available treatments.  I'm unsure of what "breathing apparatus" your referring to, I have a nebuliser from my asthma years but i can't see how that would revive him . However I've had this suggestion before and i will be asking about supply of breathing apparatuses and apnea monitors. We haven't been offered anything so I will be actively seeking Diagnosis via referral to Brisbane Mater Hospital. Thank you for your response :)

Teresa - posted on 11/25/2009

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Oh my gosh I would be changing doctors faster than anybody can say "whatever"! Our daughter had apnea when she was born - she just stopped breathing in her sleep! Thankfully, they caught it at the hospital and after she was in NICU (neonatal intensive care) for a week they let us bring her home on an apnea/heart monitor. She's perfectly fine now, and I hope you can say the same for yours soon!

Michelle - posted on 11/25/2009

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Quoting ashie:

this sounds like asthma. i am no expert but the chest rattles and mucus sounds so familiar to me my friends son was like that she had to keep at the doctor i mean hound him till the eventually diagnosed him with it.also my nephew has this and again very familiar.i cant say the ever stopped breathing but say it to your doc.was hes heart checked for murmur.id keep pressing the docs to find out what this is.good luck to you all.keep us posted tanx:)


..I had asthma all through my childhood and my first instinct was that these symptoms could be the onset of asthma. We've been to two doctors and back to the hospital but still nothing diagnosed, they say maybe its apnea maybe its just the reflux. Doctors don't seem to hear chest rattles though its quite obvious to myself and others. I think they are initially distracted with the uniqueness of his"little ear" problem and not taking us seriously with this. I have been reading up on his ear condition Atresia/Microtia and it seems that in some instances children with this condition can also have abnormalities of the throat and palate. They did check his cleft and palate at birth but only briefly, so I will be persistant with diagnosis until i get some answers and hopefully treatment to help him cope with this.



It helps to have feedback from others to find "possible causes" for these incidences that i can bring to the doctors attention so thank you for contributing.

Sharon - posted on 11/25/2009

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If he is really not breathing and not just momentarily holding his breath - he needs to be evaluated by a professional and not his current doctors.

All babies blow out bits of mucus after a crying fit. lots of babies seem to be holding their breath while gathering more strength to continue crying.

Talk to a doctor about his here again / gone again rattling chest.

[deleted account]

I hope a solution is found for you soon, what a thing to worry about all the time! Couple of suggestions that may sound very simple, but they may help and have no side effects if they don't work. If he's sleeping in a crib, you might want to try having him sleep with someone -- babies actually can learn to regulate their breathing better with an adult as an example. As for the mucus, you can try putting a drop of eucalyptus essential oil under his nose or putting in a humidifier or in his bath water to release the eucalyptus in the the air. Try also adding Gripe Water in his bottle if he's bottle fed at all. Gripe Water has grapefruit seed extract in it which is antibiotic, antifungal, anti-protozoan, and antiviral, so if anything immune system related is the cause, that should help fight it. You can also take grapefruit seed extract yourself if he's not formula fed to clear out anything that you might be passing on to him as well. Best of luck!

Renae - posted on 11/24/2009

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Wow, how scary for you. I'm scared for you just thinking about it. Firstly do you have a breathing monitor under his mattress? I assume this is what you mean by "sids monitor". The one I have is called Angelcare Movement and Sound monitor. Look, my background is in psychology not medicine, BUT, I do know that there are several conditions which cause people to stop breathing which may not show on a brain scan and I don't think your baby has been thoroughly tested enough. You absolutely need more help than what you received in hospital. Please get a referral from your GP to a paediatrician who SPECIALISES in these sort of disorders. Too often general doctors just do not have the experience in such specialist to offer enough help and support. You definately need a better answer than "whatever you did last time" and you also need a diagnosis. Dont let them turn you away with "he will grow out of it" this is too serious to rely on that. You could also prepare yourself by renting a breathing aparatus to keep at home (safer and easier in an emergency than mouth to mouth), but you have probably already thought of that since you have had to resuscitate before. Keep at the medical profession until you get the help you need. If your GP wont listen try another one, and another. Its simply not good enough to leave you on your own to deal with something so serious. I'm sorry if I haven't been of much practical help.

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