Posted By Posting
Jun 21, 2009
Another apnea and choking episode
I am shaking. I was in the middle of typing a response to johnnies mom and I could feel Holden stop breathing (I was holding him upright and he was asleep) but he does this all the time so I didn't think too much of it. He then let out a big cough and up came formula but the scary thing is that he couldn't clear what was left in his throat. He seemed liked forever before he took a breath and even then struggled after that to clear it. I am scared to lay my baby down. He has apnea spells, coughs, chokes quite frequently but this one scared me to death. Since I hold him all day long, I can feel and hear him reflux close to 100 times that I can count. But this apnea along with the choking thing just made my heart stop. He hasn't even had hardly anything to eat to reflux on. Things are suppose to get better not worse. UGGH!
Jun 21, 2009
Could this viral thing along with teething be causing his motility to slow and/or make things this much worse? although it seems like things have gotten worse really starting about 6 weeks ago. I can't wait until my app. July 9th.
Jun 22, 2009
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
I know your fear!

Joslyn had apnea spells that would turn her face and lips deep blue. But at first she had no warning sign.. we would look down and she would be blue. We started to realize (after her being dx'ed) that she made the smallest reflux sound as she was refluxing up and swallowing it down.

I am so sorry for the scare you got.

It could be the teething thing making him worse. Poor fella. Can you call the Doc and ask to be fitted in? Tell them what he is doing and maybe they will take him in.

Good luck

Jun 22, 2009
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I had the same issue with one of mine. It was sooo scary. I think I watched her sleep until she was a year old. very stressful. ((HUGS)) to you!

Have you thought about asking the DR for an apnea monitor? It might provide you with a little peace of mind. I also felt better by learning what to do and what not to do... and by learning infant cpr. That may sound extreme but it made me feel a bit more empowered in a situation that I had no control over (if that makes sense).

What has the DR said about these episodes? Are they causing any aspiration pneumonias?

Teething def made my girls worse. Is he really constipated with his slower motility? If so, that can def aggravate reflux. One of ours had to be placed on Miralax. We still have to keep her at applesauce consistency stools or she refluxes like a mad woman.

I will be thinking of you.... I so know how this all feels. UGH! If you need anything feel free to e-mail me at
Jun 22, 2009
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
PLEASE, PLEASE make sure the doctor is taking this seriously. One of the best strategies is to take another witness with you who can assure the doctor that you are not overreacting. There are some atypical reflux treatments that can be used when the situation is this scary. Feeding tubes can be used to put food into the jejunum which is past the stomach. This is called a J-tube. If it works correctly, the food really can't back up into the esophagus.
Jun 22, 2009
I know all about the getting worse and not better. Kody has been for a while now. I sure hope that your gi appt. comes quickly enough. I would say to call the gi and tell them what happened maybe they could get you in sooner or at least give you a monitor like pp said. I hate the waiting thing because it gets scary when they get really bad. I know that Kody was really bad last week and that's when he had that reflux episode that made him stop breathing for a little while. I can't imagine the fear that you got last night. I'll be praying for you and Holden. Hang in there!
Jun 22, 2009
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) We had the same issues, and in looking at Holden's age, that is exactly when Lorenzo's apnea, choking and aspirations were at their worst. We had a terrible time getting our doctor to take our concerns seriously, and it took until he was a year old before he was diagnosed with apnea. We co-sleep, and at the time I was actually wearing him in bed most of the time, and the doctor turned my concerns into a rant against co-sleeping.

Here are a few things to expect: they will want to know how long the episodes last, and if there are any changes in skin or mucous membrane color, and whether there appears to be any effort to breath or no effort at all. Now this is just my own opinion, but if you are worried, and you obviously are with good reason, don't be afraid to tell them what they need to hear in order to get a sleep study performed. What they need to hear is, at a minimum, the episodes last twenty seconds or more. If I had it to do over, I would just tell them that they all lasted more than twenty seconds and he turned blue. I'm sure we would have gotten a sleep study much sooner if I had.

There are apnea monitors available online (Angel Care is one brand) which might help give you peace of mind if your physician doesn't prescribe a monitor. Also, my own personal experience was that holding Lorenzo upright actually made his apnea episodes longer and more frequent, as did putting him down on his back. When I started putting him down on his stomach, he naturally assumed the classic postures that babies with obstructive apnea assume that helps to keep their airway clearest, and the fluid came up and went back down, or out, much more quickly and usually without the choking.

Please keep us posted. It is such a stressful thing to feel the level of uncertainty about your little one's well-being that you feel when you can't trust that they are breathing on their own. We have been living with it for two years, and it is exhausting -- but there is help. Don't be afraid to insist on getting what you and your little one need. ((HUGS))

Jun 22, 2009
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I have not advice to give.. Only hugs. I am so sorry that you and Holden are going through so much right now. I wish I could be there to give you a little breather. You are an amazing mother, hold on to that. I have the Angel Care monitor. Used it with both of my kids and it is the standard baby gift I give to family members. My kids never had apnea but I felt better having it anyway. Made me sleep a whole lot better. I absolutely love it. I wonder though if the real hospital ones might be a better and safer choice for you. I think those go on the finger?? Please ask someone that knows. I dont know what it is about teething but I can vouch that it makes like with reflux a whole lot worse. I have no idea why, I just know that it does. Ryan just got his top molars and two days later he started on his bottom ones. It has been a really rough 3 weeks around here. Nothing compared to the world you are living in though. I really feel horrible for you. Have you tried the Nap Nanny yet? I used that with Ryan. It has a great angle. He never refluxed while in it . It was awesome..... until I found him crawling out of his room at 3 in the morning. No idea what made me wake up and check on him but when I opened my door his was crawling out of his room giggling and crawled right to me. Might I add that I didnt have a gate at the top of the stairs and that he was strapped in the Nap Nanny when I put him to bed?? Houdini from birth. I about stroked out right there. So, it is a wonder thing but be careful if Holden is an escape artist like Ryan is. Hugs to you!! Keep us in the loop!
Jun 23, 2009
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
My DD has had choking spells from birth where she cannot breathe. We can go a month without one then all of a sudden have 3 in a week. I can relate to you as it is absolutely terrifying. Mallory would choke and be unable to breathe with no warning, no precipitating factors and it would take what felt like ages for her to start breathing again. She had her first 'blue' episode at 6 days old. My hubby and I would take shifts at night so that one was always awake to watch her (NOT ideal, I know). We finally got a monitor recommended by a mommy on this forum: BabySense V. It has been a godsend. I can sleep again at night and we've had only 3 false alarms. We're pretty sure the choking was/is caused by slowed motility (delayed gastric emptying) although she didn't do well on the meds so we discontinued them. We have been told that babies breathe erratically but if the apnea episodes last longer than 20 seconds then it needs to be addressed. And it's also important to watch for signs of aspiration pneumonia after a choking episode (fever, difficulty breathing/wheezing). I FEEL for you.... I've been there too.
Jun 23, 2009
Thank you ladies! Well he was fine yesterday (after the episode night before) until after lunch then his cough got worse. He wasn't retracting or anything just having coughing spells back to back and retching/vomiting as a result. So I called the ped and he sent me in for a chest x-ray last night which showed no pneumonia. He was up coughing all last night and is coughing up phlem this morning. Poor kiddo he has lost about 8 oz in the past 5 days as a result of all this mess. Good grief. Thanks for the support.
Jun 23, 2009
Holden did have a sleep study done about 2 months ago. It showed several partial and complete episodes of obstructive sleep apnea with O2 desats to 84%. Originally it was thought he may have apnea due to his micrognathia. This was before his probe results came in and the probe and sleep study weren't timed together. They did the sleep study prior to going under anesthesia for his bronch and endoscopy. During the bronch though the pulmo flipped Holden everywhich a way to see if it was his tongue obstructing but it didn't. Now we know it is reflux related. you can see him reflux the same time he has one and with as many episodes of reflux as his probe showed it has to be related. They did not think I needed an apnea monitor as he said it would have false alarms, etc but with his sleep study results I'm sure I could get insurance to pay for one. I will also check into some of the ones you all suggested on here. I hold him most of the day and night anyway (sleep feeding and then upright for at least an hour after a feed) I usually have to hold him through his naps, etc. b/c he has now gotten so use to being held that when I lay him down he wakes up and if he wakes up crying he will puke (he doesn't have to cry but for a split second b/f that happens). When he outgrows this he is going to be one spoiled baby! Ha! What did Lorenzo's sleep study show?
Jun 23, 2009
adelines mom
so sorry about Holden's episode. adeline choked the first day she was born. turned blue and we called the nurse. scary. she slept with an apnea monitor for the first nine months at night. we did get some false leads. that little box can be really loud, but comforting at the same time. our insurance did cover it. it has a happy day when they came to pick it up, but one scary night without it. adeline had a pretty bad episode about a week ago. refluxed and so much mucus came up. had to suction her out a couple of times. scared us. the occupational therapist said that we probably needed to take a look at food allegeries with that much mucus coming up. she is also teething right now, which can make things wicked. like jenrackley, we use the miralax and it is really helping!
Jun 23, 2009
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
If his apnea episodes are strictly obstructive, then you might actually look into getting an O2 sat monitor, rather than an apnea monitor. My understanding is that, when reflux is causing obstructive apnea, the apnea only lasts as long as the fluid is in the airway and the airway recovers from its natural response to obstruction -- in other words, whereas there may be concern about very long apnea episodes with central apnea, or obstructive apnea caused by a structural obstruction, that is not usually the case with reflux obstruction. The concern, then, is really more about O2 saturation, since the heart has to work extra hard to oxygenate the blood if breathing is not doing so efficiently, and aspiration, since there is usually a sharp intake of breath when breathing begins again and any fluid remaining in the airway may be breathed into the lungs. The aspirations, as you already know, pretty much rely on observation after the fact to determine if they have caused an acute problem, but the O2 saturation is impossible to determine without an O2 sat monitor. You can, I believe, get them online for anywhere from $100 - 200 dollars, and your insurance may cover it if your doctor will prescribe it.

Lorenzo's sleep study showed, in addition to multiple apnea and hypopnea episodes, extremely short sleep stages and sleep cycles and virtually no stage 4 (deep) sleep. It also revealed what I already knew, which is that he had a complete arousal after every time he entered light sleep from a deeper sleep. We haven't done a repeat study, mostly because there isn't any sign so far that there is any significant impact on him from the apnea episodes at the moment. I have mixed feelings about it. I still feel weird about not doing anything when my son is not breathing in his sleep, but it is true that as long as we are monitoring his heart, lungs, behavior, development etc. and everything seems alright -- which at the moment it does -- there is no pressing cause for concern.

There is a forum at specifically for pediatric apnea, and also one to help you understand the results of sleep studies. There is also a lot of good information in the stickies at the top of each forum. Hang in there -- and just to help you feel confident about holding him all the time, I held/wore Lorenzo 24/7 for his first five months, then most of the time until he started walking (at eight months), and it wasn't until he was about 18 months that he really began to prefer to be on his own. Now he is a confident, compassionate little person who can play independently for fairly long periods of time but also likes to snuggle up and be a part of whatever I'm doing, just as he has always been. I feel like I am now seeing the true upside of all that time spent with him attached to my body, as he evolves into a loving, intelligent, balanced little person. You are doing great by Holden, and you will one day look back on these early times and know that along with the challenges, came big rewards...

Jun 23, 2009
adelines mom
pretty sweet to read the last paragraph of the last post. we have held adeline upright a lot too. she is one year now. people have said to me you are spoiling her. HA! the only way i can get her comfortable and to nap during the day is upright on my shoulder with a binky. sometimes can even get two hours. if i put her in crib, blam she is up and will not go back to sleep.
Check with your
doctor first!