Posted By Posting
Feb 28, 2010
I am back after a hiatus of having no babies with reflux--but now that our two new additions have arrived, here I am. All of my children have had GERD and MSPI, and these two are no exception of course. They will be 3 weeks old tomorrow, and already they are on alimentum (I did diet modification to breast feed my other children for a while, but with twins the stress was too much!) and Ethan is on pepcid, Hannah has already had to move on to prevacid. Unfortunately there is something new and different about our experience this time around--Hannah has, for lack of a better description, choking episodes. It does not seem to correlate at all with when she last ate, it can happen at any time. Basically she will be completely silent, the only way to know it's happening is if you're looking at her--thank god we have been every time. It starts with spit-up pouring out of her nose, not her mouth. Her eyes bug out, and she is not breathing. We hold her face down, basically banging on her back trying to get her to cough up whatever's choking her, and wait anxiously for the scream that tells us she's breathing again. The first time it happened (when she was 10 days old) she was not breathing for about 15 seconds. We didn't know what was going on, and ended up going to the ER. She was checked out and was doing fine, we were discharged after a few hours of observation. She has these episodes once every day or two. On two occasions she has turned blue around her mouth and in her face a little. I don't doubt that it is a reflux event, but does anyone have any experience with this? Any suggestions? I am going to call the pedi again tomorrow, but there is no way I know of to stop spitting up, which seems to be in essence what is happening. I am at a loss. We just sit and watch her and feel nervous and worried, waiting for the time we somehow miss it. Does anyone have any advice or wisdom, suggestions, comfort...? Any input would be so greatly appreciated, this is so scary!
Feb 28, 2010
Sorry all of that ran together in one paragraph!! A few things I forgot to mention--the ER did refer to the choking episode as an ALTE (Apparent Life Threatening Event) and our doc concurs, even though we have a likely explanation. Also I am sitting here googling everything I can think of related to our concern, and I see that the reflux coming out of her nose is called "Nasopharyngeal Reflux", and seems to be associated with its own set of causes--one of which is prematurity, reminding me to add that the twins were born at 36weeks 5 days (not really early for twins) they didn't have any health concerns at birth or need any NICU time. Anyone have experience with nasopharyngeal reflux? And finally, our first child slept on his tummy (he was hospitalized for severe esophogitis at 3 months, he was vomiting blood) but I haven't dared to with any of the others. Does anyone let their infant sleep on his/her tummy?
Feb 28, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
Please please please, make an appt. to see this Ped and do not allow them to send you home until you get some testing scheduled. I cannot stress this enough. Blue spells are nothing to play around with.

I can suggest asking to have an UGI (Upper GI) done to ensure that all structural "items" have formed correctly from the mouth down through the GI tract. This will tell you IF there are any atresias (sp?) present. These are "holes" or clefts...they can cause blue spells like what you are describing and cause the milk to flow out the nose.

I would also schedule a MBSS (modified Barium Swallow Study) to be done as well. This will ensure that all the swallowing mechanism are working correctly and that the milk is flowing into the stomach and not into the lungs.

If you have a video camera, or have one on your cell phone, and you witness one of these episodes between the now and the appt. get it on film for them to see.

But please, I don't mean to scare you, please see the Ped tomorrow. Don't let a nurse push you around, demand to see the Ped to discuss these things.

Feb 28, 2010
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.
Yes, yes, yes, and I would insist on going home with an apnea monitor as well. So sorry you're going through this... We went through it and it was so terrifying. As jedd's mom said, don't let them push you around -- she NEEDS testing and monitoring.
Mar 01, 2010
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
The spells are probably acute life threatening events (ALTE) and are caused solely by the reflux coming up and blocking off the airway. My son had these for almost a year and a half and they are very scary. The only thing that made them better for us was a motility med. He used Reglan and it made the world of difference for us. My son also had apnea but having the monitor also helped us when he was having these ALTE episodes. If it keeps happening definitely do the testing that Jessica mentioned and try different things. There is nothing worse then watching your baby not be able to breath so I feel your pain and hope you get some relief soon especially with twins.
Mar 01, 2010
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
You might also ask for an ultra sound of the belly to rule out issues with his pyloris which may be causing pyloric spasaming or pyloric stenosis. Push for answers.
Sep 27, 2010
I know its been a while since this was posted, but I am currently going through a very similar situation with my newest son and would love to be able to talk to you about what you have learned or what may have helped. My son had a choking episode just like you described at 12 days old and we ended up in the emergency room which led to a 6 day stay in a childrens hospital. I have several diagnosis's but I am desperate for support and answers since I am afraid to be alone with him during feedings now. He was diagnosed with velo pharyngeal insufficiency, naso-pharyngeal reflux, and laryngomalacia. I believe he has silent reflux from what I am reading on here and what all I read on his symptoms. He has had a modified barium swallow which showed severe naso pharyngeal reflux. He has seen an ENT, OT, Speech therapist, and geneticist. Thankfully he has not had any more of the choking episodes like the first one but he still gags really bad when burping and stops breathing for a few seconds almost every time he burps. He seems to be in alot of pain when he eats and burps. He coughs alot during burping and gets choked up and quits breathing for a few seconds. They have him on thickened feeds to nectar consistency, and ranitidine 1mL 2x daily. He also is elevated for feeds and sleeping. But he still scares me half to death every time he eats. He is 26 days old now so I am still very new to all of this and very scared and confused. I hope so much that you have found some answers to help your lo and hopefully she is doing much better now.
Check with your
doctor first!