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Feb 03, 2010
lorenzomama
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.
adeline's mom
Lorenzo started having what looked to me like some sort of pre-cursor to night terrors when he was less than a year old. He would be sleeping, and then suddenly his eyes would open wide, although they had that thousand yard stare that syas the person isn't really there, and do this immense moro reflex type startle and just kind of vibrate for a short time. We had some testing done at that point to try to determine if they were sleep seizures, but the test revealed nothing. (It's kind of a long story -- I had been observing apnea and choking episodes for a long time, and his sleep was unbelievably disrupted every night, but his pedi, who we have long since fired, refused to take my concerns and observations seriously.) His sleep apnea was diagnosed at 15 months, after an aspiration episode and a referral to a pulmonologist. He had a sleep study done, which was supposed to be simultaneous to a pH probe to connect the two, but they did the pH probe wrong, so the true cause of his apnea is technically still unknown.

The night terrors became more frequent and more pronounced between 18 month and 2 years, though they have never been as bad as some kids'. When he has them, he "wakes" up early in the night, eyes wide open but staring in a horrified but vacant kind of way, his mouth opens as though he is about to scream, but usually he just makes unintelligible gasping, moaning or grunting sounds, and he often clutches at things (most often a part of his body, as though it is some foreign object and he is terrified of it).

My understanding is that night terrors are distinct from nightmares in that they tend to occur in the first half of the night, the person is not technically awake at all - they are simply 'stuck' between sleep stages, and that they are exacerbated by sleep deprivation. I don't know what the research is on it, but my observation is that they seem to run in families.

If you can get a sleep study done in a certified sleep lab, I highly recommend having it done. They aren't easy to get through with little ones, but they can provide a tremendous amount of information about your child's sleep. You may want to explore some of the information at www.sleepapnea.org for more information about sleep studies (including a list of certified labs), apnea and associated issues.

Feb 03, 2010
adelines mom
THANK YOU! Her first wake up is usually around 10:45 or 11:00 and she almost shutters. She doesn't scream, but she has given me that blank 1000 yard stare. She will yank on the zipper of her onesie at her neck, and then she settles down. Sometimes she will rub/bat at her nose too. Talked to one mom and she just had the study done at our local hospital not too long ago. Said it went well and they got a private room. Will talk about all of this with ENT tomorrow and give you an update. Have also been looking into giving alittle melatonin. Have you tried this? Know they don't recommend for babies.
Feb 04, 2010
lorenzomama
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.
I haven't tried Melatonin, but I just read some research which suggests a link between inadequate seratonin(sp?)production and SIDS. I've always had a sense that part of Lorenzo's difficulty sleeping was a protective mechanism -- sleeping so lightly and waking so frequently as an intuitive or instinctive means of staying alive through the night, so I found that apparent link very interesting.

Do keep me posted, I'm interested in hearing what the ENT recommends. Some physicians discount anything short of screaming bloody murder being night terrors, but based on my reading about what a night terror is, the essential elements are the time frame/sleep state and total lack of conscious awareness. Some claim that they don't occur in children under two, but it is my opinion that many people just don't recognize the signs in children younger than two.

Feb 05, 2010
adelines mom
we had a good visit yesterday. ears were fine, a lot of wax though. told me to put a tiny bit of baby oil in. they scoped both nostrils. her right nostril is still competely blocked. now looking at probably four years old to do the surgery to open. will be major ordeal. 4 night stay and 5 to 6 weeks with a drain in. reflux has to be gone. he went all the way down in the good nostril, down to "i guess" voice box area. she refluxed while he was in. it was pretty stressful. wants her to stay on the prilosec. was on board for the sleep study. wants to check for apnea, also silent reflux, mentioned ph probe, and oxgen levels. they are going to call me to set it up. will take place in the hospital. they do two children a night. begged for a private room. they said it will probably be in four or six months, sooner if there is a cancellation. hope this will give us some answers. i gave him details on a regular night. didn't think it was night terrors. i am not so sure! he told me do NOT give her the melatonin! he was very against it!!! and i will not give it to her. have had other doctors say it is okay and have heard some good feedback from some mothers that have used it. know that it is not fda approved for children. wish i could wiggle my nose and the study be done!
Feb 06, 2010
lorenzomama
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.
I'm glad you guys had a good appointment, and especially that a sleep study is in the future, though I'm sorry you have to wait so long. Be forewarned that the results usually also take some time to be completed, so it may be awhile before you get answers on the apnea front. If it helps any to know this, the main concern when it comes to Obstructive Apnea is enlargement of the heart, as it has to work harder to oxygenate the blood when the lungs are not able to take in sufficient quantities. It generally takes a very long time for that to happen. Since you are having to wait so long for a sleep study, if you have an agreeable pediatrician, you might see if you can get her into a cardiologist before that, just to assure you that all is well with her heart and to get a baseline look at her circulatory system. If your pediatrician is not totally agreeable, you might, in advance of talking it over, start checking her heart rate periodically during the night -- if she has high or low heart rates, document it and let the ped know. Sometimes, when additional physicians are requesting a sleep study for a little one, they can get you in sooner rather than later.

When the sleep study is nearing, and definitely when you get the results, go to www.sleepapnea.org -- there's a forum for pediatrics, and you can get loads of support and information about what to expect and how to understand the results. Best wishes to both of you!

Check with your
doctor first!