|Jul 03, 2009|
Sleep training a refluxerHi everyone. I have posted once before on here about 6 months or so ago with concern about my son's silent reflux. He is now 8 1/2 months old and has shown little to no improvement. Ever since about 3 months old, he has not slept more than 2 hours a stretch (with some rare exceptions), sometimes waking even more frequently. He is on 15mg prevacid (split dose), 1mg Axid (1 or 2x a day and 2 mg of carafate (2-3x day as needed). We have done a scope, upper GI and ph probe. All confirm it is reflux, but esophagus looks good, no erosion, so the meds are protecting it. So we have been through the ringer and our GI has no further tricks up her sleeve. I have tried to push her our pedi and sleep specialist to up our prevacid...Evan is now 21 lbs, so I would think that he needs more than he did as a baby. (On a side note, how do you find those Drs that will give those aggresive dosages? I live in the Dallas area, if anyone has a recommendation) My GI and Sleep Specialist both think that what he is refluxing isn't the acid, it is the milk in his tummy, so we have tried bethanocol and ethrymyocin (spelling?) with no avail, it didn't help, just made him more irritable. I don't think he suffers from delayed motility (according to upper GI). My GI is now at the point of considering surgery for him. Since he is actively crawling, pulling up and pretty much upright 80% of the day and hasn't improved, her take is that he is going to be a long-term refluxer...maybe into his 2's before getting any better. This is a hard pill to swallow, for I am so sleep deprived, have not slept more than a 2 hour stretch for about 6 months now. I can't fathom doing this for another year so. The hard part is we aren't comfortable with doing surgery either.
Here is my question to all of you who have had similar stories. When Evan wakes at night it is due to his reflux and not habit, I believe. We have always just given him a drink of water and he goes right back to sleep. If we don't give him a drink, he will cry and get all worked up and make his reflux worse. We have for the sake of my sanity and his, just given him a drink so that we both get some sleep. Now with the realization that he may not get better for a while, I am wondering if it is even feasible to try and sleep train him? I have let him CIO a couple of times at different intervals through the night, but it doesn't seem to make a difference. He is going to reflux regardless, so do I let him scream in misery while he refluxes and hope that he will learn to self-soothe (and how long before he learns that) or do we just continue to give him water. The other question I have is his teeth have started to come in and he is still drinking at least 3 bottles of milk during the night. I know that there is concern about rotting the teeth, but I don't see how I will be able to take away any of these. He used to do 6 bottles a night, and now it is hard to hold him off to 3, we give him water in between. Has anyone had this problem and is it something I should be concerned with?
|Jul 03, 2009|
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
|I just messaged one of the moms who used to be on here (she lives in your area) to see if she has any ideas about a new doc. Hopefully she'll post on here for you. |
AS for sleep training, we did dreamfeeds until 9 months which was the only way my dd would sleep more than a hour at a shot. Her teeth are fine. It does also seem that he could be put on a higher dose of prevacid (many kids here are dosed higher, but often that's for damage control and healing.) We had vomiting and no sleep until about 11 months, but right around the first birthday the vomit slowed and stopped. The sleep is still no better at 22 months though. We've had spells where she'd sleep, then back to square one. I don't know much to say on the sleep, since we've obviously had no luck either. HUGS and prayers for you all!!!!
|Jul 03, 2009|
|I feel for you because I am in the same boat. Mine will be a year old on the 6th and he still only sleeps for a couple hours at a time at best. He too has to have a bottle almost constantly at night. Just make sure you are brushing his teeth or at least using a wet wash clothe to clean them once a day. If there is no plaque then you wont have to worry about tooth decay. It's great that he will take water in between, that also will help with his teeth. I have to feed mine through the night so he can get enough calories in him. For me, it is getting easier all the time. I hardly notice getting up every hour or so, where when he was 6 or 7 months I thought I might die from sleep deprivation. He's not sleeping any more but I am learning to cope better and I don't feel like a zombie anymore. If I try to let him cry it out he gets so worked up he vomits slime everywhere and then Im up changing sheets and pajamas. Its just not worth it. Mine too has been upright since he was 4 months old and the only difference it has made is we are not in the hospital constantly for pneaumonia. Thats a huge difference but of course I hoped for more. I really have little hope that he will outgrow this soon, but either way I know I will survive! Hang in there!|
|Jul 04, 2009|
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
|Unfortunately, I don't believe CIO works with little refluxers that are in pain. I finally did it with mine and she cried for hours and hours and the fell asleep standing up in her crib. Some of it is probably behavioral by now but what can we do?|
Maybe the teething is aggravating the reflux and his sleep
My kate didn't start sleeping until age 2 when she got into a real bed. I know this sounds horrible but like the previous post said it does get better. They do start sleeping more little by little and your body gets more used to it. Is there any way you can a get a respit during the day for a quick nap?
Personally I would find another GI. If he is recommending surgery at this point I would run for the hills! I believe surgery is only for those kids that are not eating and not growing and thriving. It is a very serious deal.
The medicine won't stop the refluxing but it should help with the pain. He could still be in pain even though there is no damage yet. Have you tried Mylanta/Maalox to ease the pain at night?
Like I said if your GI has run out of ideas I would definitely consult with another.
My Katie is a long term refluxer and there were times I didn't think I would make it - but I did and you will too. You are almost there I promise. When they get older it gets so much better
By the way, is he on Nutrmagin/Alimentum/Elecare. His pain could also be related to a milk intolerance. Has he been tested for allergies/intolerances? Are his bowel movements regular? Constipation can also cause pain.
|Jul 04, 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.
|I notice that you have been to a sleep specialist -- was a sleep study done? If not, I would push for that, possible in conjunction with a pH probe, to help understand how direct the correlation between reflux and sleep disturbance is. What does the sleep specialist have to say about the wakings? |
My son never slept for more than 3 hours until he was 2 years old, and most of the time, he slept for 10-90 minutes at the most. The level of sleep deprivation we both experienced was extreme, and I found it very difficult to get a physician to take my concerns about the sleep/reflux connection seriously. As it turned out, my son has Obstructive Sleep Apnea (revealed in a sleep study), believed to be caused by reflux and possibly low muscle tone in his throat. I never attempted any sleep training because I couldn't ever get comfortable with the possibility that my son was either in pain and/or emotional distress from physical issues, and it just felt wrong to me to let him cry alone under those circumstances. I started co-sleeping with him when he was four months old (and was waking every 10-40 minutes), just so that I could survive the sleep deprivation. Not only did it help me get a little more rest, it allowed me to observe what turned out to be his apnea episodes, which we may otherwise never have been aware of. I still breastfeed him, and he has always nursed at least 3 times during the night and has beautiful teeth.
On that note, however, it is helpful to note that some refluxers are also relatively late teethers (since the body is busy trying to deal with the reflux, it seems to delay teeth for some) and many have an especially difficult time with teething. My son still has a long way to go before he has all of his teeth, and whenever he is getting a new one, what little improvement we have had in sleep (he now sleeps 1-3 hours at a stretch) goes right down the toilet. Often the first sign that I have that he is teething is either nursing all night long, or waking during the night and staying awake for hours.
When it comes to sleep, there are so many things that can disturb the transition between sleep cycles (which is what it sounds like is happening in your case) -- from reflux, to teething, to developmental advances, to fluid in the ears (common also among refluxers), and on and on it goes. In a way, it is remarkable that any baby sleeps through the arousals that occur for everyone between sleep cycles.
As for you sleep deprivation, if you don't already, I highly recommend sleeping at any available opportunity. If someone else can get up to give your little one water, if you can nap during the day when (if) he does, if someone can take him out for an hour or two during the day now and then to let you sleep in peace... There is no way to know how long your little one will continue to have poor sleep (though 2 years seems to be a somewhat magical number when even the worst, like mine, improve a tiny bit), so it is essential that you maintain your own health and sanity. ((HUGS)) to you -- I haven't slept for more than 3 hours in a row for 2 and 1/2 years (and I recall the period between 7 months and 12 months being the worst), so I definitely know your pain. It will get better....eventually...so hang in there, and take good care of yourself as much as you can. You might also want to read The No Cry Sleep Solution, if you haven't already as it offers some good information and helpful tips, though they don't always work for everyone (like us, for example). Nonetheless, sleep is children is constantly changing, and having a toolbox full of tools to help in any given situation can't hurt, and might help.
|Jul 06, 2009|
Mom to two refluxers. DS 4.5 years, on prevacid since 5 weeks. Trial wean this summer...fail. Intolerant of dairy and soy DD born Nov 2010. Currently on zegerid. Had stomach malrotation & surgery at 9 months. Avoiding dairy/soy with her while BFing.
|You have gotten a lot of advice already....What formula is he on or is he BF? I would consider a food intolerance. My son would not sleep at all for 7 months. It wasn't until I realized he had a milk and soy protein intolerance that he finally started to sleep. He is bf and I had to go completely dairy and soy free. It was like night and day with him. Sure he still had his issues with the reflux and would wake at night...but nothing like the constant crying or waking every hour.
||Check with your