Posted By Posting
Mar 17, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Infant reflux and sleep
Ok, ok, I know this is a HUGE problem that there is no one answer to. Each baby is different and each parents philosophy is different. I accept that but am desperate and looking for any ideas/suggestions any of you may have. My 3.5mo DD's sleep is getting worse not better. She barely naps (1/2hr here and there) and by the evening is overtired and overstimulated (2 year old DS makes it hard to keep her asleep or dedicate too much time to get her to sleep as he is a young 2 year old--can't be trusted unsupervised). So by the evening she is a screaming mess and takes hours (4+) to get to sleep and stay asleep (she falls asleep many times but doesn't stay asleep), lots of rocking, bouncing, patting, pacifier, bottles, etc. She then has a good consolidated sleep period that gets shorter and shorter the longer she takes to get to sleep. I know she'll start waking in the night soon to have that whole process repeated (negative sleep associations). She is inclined on the nap nanny and has been on buffer babies for 3 weeks. I do know the sleep basics but can tell she is, at least some of the time, having reflux pain/discomfort. For that reason and the fact that she was a month early, I'm not sure I'm comfortable with any amount of cry it out (at this point) although that's kind of a joke--she cries/screams much of the evening anyway! I have used that "controlled crying" with much success with 2 year old but he was 7 months at the time and it was a very cut and dry problem and his reflux was under better control at the time. I'd love to hear what you're doing or have done, even if it's not working great. I really don't know what to do or how long I can continue with this!!! TIA, Jodi
Mar 17, 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.
((HUGS)) to you -- sleep deprivation absolutely sucks. I have never had any success with anything with my son, who is now almost 3 years old and has slept through the night twice (and those were just a couple of months ago). I think you are right on about not doing any sleep training when her reflux seems to not be in control -- even the authors of sleep study programs consistently have disclaimers stating that their programs are unlikely to be successful with children who are suffering from reflux or other medical issues.

One thing I would like to put out there, since she was both early and has reflux, is sleep apnea. I bring it up because it isn't always obvious that that is what is going on, as the symptoms in children are quite different than in adults, and when it is reflux related, it can definitely lead to sleep anxiety (we dealt with that for over a year in my son -- the hours of trying to get him to sleep, only to have him wake again moments later and have to do it all over again). The first thing I would do, however, is work toward getting her pain free -- that is kind of essential to sleep.... I hope things improve for you soon...

Mar 17, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Thank you Lorenzomama, I appreciate it. I suppose the only way to diagnose the sleep apnea is monitoring? My son wore one for 7 months due to prematurity and reflux related apnea and bradycardia:-( 3 years of sleep deprivation is more than I can think about right now, I'm sorry you're all having such a time of it too...
Mar 18, 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.
The best way to diagnose sleep apnea is through a polysomnograph, or sleep study. That is the only way you will know if the episodes are caused by airway obstruction (obstructive apnea), by brain signals or lack thereof (central apnea) or a mixture of both. It is also the only way you can tell if there are episodes of hypopnea -- which are not complete cessation of breathing, but can have problematic side effects. A sleep study can tell you exactly how long apnea episodes are, how low the oxygen saturation goes and for how long (which is extremely significant), and, if done in conjunction with a pH probe, can determine if the reflux is causing apnea episodes. It can be a bit of challenge to convince pediatricians that a child needs a sleep study, as they are expensive, somewhat invasive, and most pediatricians don't know much about sleep to begin with, but if you are concerned about the possibility, I would press for one. I can provide you with some additional info on sleep apnea and talking with doctors about it if you like.

Yes, don't think about 3 years.... I have found that the single most effective way to deal with sleep deprivation that cannot be avoided is to live in the present -- to avoid looking to the future with hope or pessimism about sleep potential. Just take it as it comes, avoid watching the clock unless you are keeping a sleep log, and know that you are not at all alone in this....

Mar 19, 2010
slimfast13
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!
Sleep is so individual. I feel your pain. My dd would go literally days at a time without a wink of sleep, and many people thought I was exaggerating until they saw me. Dark circles down to my knees, unable to drive due to total sleep deprivation, unable to comprehend any complete sentences..

I spoke to my ped about this, and she gave some very good insights. 1. The reflux is not totally under control yet 2. She's not learned to sleep because she never really HAD slept and 3. Routine will only work if it worked at least once.

Sleep apnea could be a concern, and may be worth getting checked. I think the better bet (with all the screaming involved) is that the reflux pain is not yet under control. Prevacid took 6-8 weeks to fully start working for us, and Allie also needed Pepcid even though her reflux was dx'd as "mild."

I don't know how you're doing it with 2 refluxers. I'm not sure I could handle it! HUGS and hoping for some rest soon!

Mar 19, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Thanks Lorenzomama and Slimfast13. I don't think it's the pain associated with acid that bothers her. She used to be in more pain. But, she has extraesophogeal reflux and is constantly, frantically rubbing her nose on whatever she can. I think it is extremely irritating though I believe it is no longer acidic. I know only time will help that one:-( I am EXTREMELY reluctant to ever do a PH probe on either children. I've had it and it was horrible, I almost ripped it out. Every time you swallow, it pulls and tugs. DD is sensitive and already doesn't eat enough, I think she'd cry and refuse to eat entirely with the probe in, nor would she sleep, so it wouldn't be accurate. I will bring up the apnea to her doctor though to see what she thinks. Lorenzomama, good insight. Hard to do though consistently (live in the moment). I will try to be better at it, I already try hard to maintain perspective on the whole scenario. Slimfast13, yes, I thought my first child had such problems because he was so significantly premature (28 weeks) so I was SHOCKED when she had the same problems if not worse!! They are a handful for sure. They are constantly waking each other with crying, tantrums, loud toys etc. I take it one moment at a time right now--it's the best I can do:-) And I try not to look in the mirror--I too have the bags, am pale, Can barely think, speak or type in complete sentences, and am a mess;-0 I know sleep is highly individual but am grateful for your thoughts, suggestions, and support in general--it is very helpful!!
Mar 19, 2010
vigilantmom
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
My son also attacked his nose all the time from the irritation of the reflux. He has a constant scab on his nose for months either from scratching it or rubbing it. 3 things that helped him was 1. Letting him sleep in his Playtex Soothing Motions glider (I think the angle helped to keep the fluids out of his nasal passage) He slept really well in that. ( 2 to 3 hours naps and all through the night) 2. When he was hold enough to hold his own head he spent a lot of time sitting up in his bumbo and 3. When he was 6 months old my doctor was ok with starting him on a low dose of Claritin. That is what finally stopped the nose attacks. My guess is that is descreased the swelling and itching?? Hopefully you will find something quick that will work for your daughter.
Mar 22, 2010
maxsmommy
Wow, Jodi, I know how you feel! Max actually slept great, only up once or sometimes slept thru the night, up until about 4 1/2 months of age. He is now 9 mos. old and is still up 3-4 times a night. What caused his initial wakings were ear problems (frequent infections) that were caused by his reflux not being controlled anymore. Well we did get ear tubes, which helped drastically, just not with the sleep, go figure! We also switched to OTC Prevacid in Buffer Babies, so I could up his dosage to the appropriate 30 mg per day because his GI would not. This has controlled his reflux, as much as it can be, but he still has DGE issues and problems with solids/table food that we are dealing with. He is also getting teeth, which doesn't help and I've read on here can make reflux worse. So in all of these mos. of trying to figure out what is wrong and fix it, I am convinced he has developed a habit of waking up and needing me to help get him back to sleep. I just read The No Cry Sleep Solution by Elizabeth Pantley and it has some great tips. I am attempting to try some of them.....trying not to pick him up when he wakes, but pat his back, shhh him, etc. And after only a few nights he is doing better. Now by better I mean he tolerates me not picking him up or just rocking him for a few minutes to calm him, then putting him in his crib awake and patting/shhhing him to sleep. I hope it will continue to get better and eventually will decrease his wakings (one can dream)! I think you can only try something like this if you get the reflux under control and can be sure that she is not in pain. If I can tell Max is in pain, I don't even attempt to try this, but just do whatever I can to calm him to get him back to sleep. With him I can tell when he is in pain, as his cries are shrieks and not just regular cries or fussing. So I would say does she need a dosage increase on her meds? How much is she on? You can go to marcikids website to find the appropriate dosage for her weight. Could the reflux be causing ear issues? She is probably too young to be getting teeth, so that is probably not an issue. Hang in there!! I know how rough it is! I never thought I'd be WISHING for my 9 month old to be up only once or twice a night, lol! And Lorenzomama is right you just have to try and live in the moment whenever you can and try not to watch the clock. I have stopped calculating the hours of sleep I got (or lack thereof) and just prepare myself that the next day will be rough if I have been up 5+ times per night. I also have a 3 year old, which unfortunately she suffers from my sleep deprivation by my lack of patience and energy. Yuck! Try and stay positive, it will get better!
Mar 22, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Oh boy Maxsmommy, you have me scared it will continue to get worse--ugh! I have read The No Cry Sleep Solution and Baby Whisperer as well and have incorporated several of their suggestions. She is on marci kids dosing and her GI is not happy about that and have suggested that such a dose could be causing her further GI upset(?). She has a cry shriek that I recognize too and when she refluxes up as far as her nose, I can tell b/c she rubs it more frantically and sounds wet in her nose/throat. Karen, I like the info about Claritin. I will keep that in mind as she gets older, I'd love it if it could help her! She's due for her 4 month check so I'll def. have her ears checked. Thanks for all your responses, I appreciate it! Maxsmommy, hope No Cry Sleep Solution continues to be helpful for you, I feel my 2 year old pays for rough nights too and it really bums me out! I have finally stopped counting how many times I was up or how many hours of sleep I got:-)
Mar 23, 2010
maxsmommy
Wow, has anyone else ever heard of a GI saying that a too high of a dose of a PPI can make things worse????
Mar 23, 2010
maxsmommy
This is Dr. Phillips' response to a GI saying too high of a dose is causing further GI upset. "That is absurd. There is no evidence in the medical literature anywhere to support such a claim."
Mar 23, 2010
haylee bug
Mother of a reflux baby
Infant reflux and sleep
In response to to maxsmommy about too high of a PPI dosage.... I had often wondered that myself after my daughters dose was increased to 30 mgs of Prevacid. I understand that every child is differant, but that increase dose did something terible to her. After taking it she would scream and seem to have terrible stomach pain. After researching and reading reviews on the medicine I was hesitate to even give it to her at all. Luckly we tried a switch over to Zantac again and it helped wonders. Of course she's still not an easy infant, but we don't have hour long screaming sessions anymore!!!!!
Mar 23, 2010
abaker89
Haylee bug, we are beginning to suspect that dd2 is sicker when taking a PPI but no one seems to have heard of it. She refuses to eat all the time on 30 mg Prevacid so we just switched to Nexium and she is even worse! Could you let me know how your daughter is doing on just Zantac? I am beginning to think we may need to do that. She is really not eating now! Aileen
Mar 24, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
Yes! I had another posting about decreased appetite and prevacid since I've had the same experience with DD eating less on Marci Kids dosing. It's a struggle to get her to eat and it wasn't that bad before I upped the dose when I added buffer babies? I don't have a great respect for our GI and I DO respect Dr. Phillips but it's hard to ignore the timing?... Our DD wouldn't take Zantac--it tastes so bad she'd gag and throw it up. Plus people tend to need higher and higher doses of it over time b/c they develop a tolerance so I don't know what I"m going to do--see what her weight is at the pedi next week for starters....
Mar 24, 2010
haylee bug
Mother of a reflux baby
responding to Aileen
Aileen, My daughter, Haylee, started out on Pepcid. Unfortunatly, we didn't notice any differance after a week. Her physcian at the time put her on 10 mgs of prevacid. It seemed to help for about a month. In the midst of trying a new medicine the doctor kept having her switch formulas too so her tiny little stomach was already irratated. When she started falling back into her screaming fits and refusing to eat her doctor said she'll eat when she's hungry enough. At that point she was eating 1 1/2 to 2 ounces every four to five hours. Finally after pleading with the doctors they bumped her up to 30 mgs. Again she was fine for a few days, but then became worse. This time she was back to screaming almost all day, like she did prior to being diagnosed, and was refusing to eat. Every thing she did it came right back up. She was even spewing formula through her nose and mouth at the same time. Once again I called her doctor and the nurse said like the doctor told you she'll outgrow it, you'll just have to deal with it. At this point I was beyond furious. My baby was almost three months old and weighed a little over 7 pounds; there were babies just being born bigger then her. I switched doctors that day and discussed the medicines with him. He took a chance at Zantac after listening to her history. (Now the previous doctor refused to try Zantac because she said going from a PP1 to an H2 Blocker would be useless). Amazing I saw results within a few days. We did have to increase her dosage twice, but she is now seven months old, weighs 15 pounds and usually can take in between 20-24 ounces a day. She still has moments were feeding is difficult, usually at night, but I can give her 1ml of mylanta and everything is fine. I guess she just couldn't handle the prevacid, but every kid is differant. She use to have terible gas all day long and even that has subsided once we swithced medicine. She even sleeps six hours straight at night without waking up, which seems crazy to non-reflux parents, but for me its awsome.
Mar 24, 2010
haylee bug
Mother of a reflux baby
post continued.......
I forgot to mention that my daughter never seemed to mind the taste of the Zantac. I know WalGreens can add flavors, but I have never had to go that route. At first I was scared she was going to exceed the max dose because I have heard they outgrow doses faster of Zantac, but I was lucky!
Mar 24, 2010
abaker89
Thanks Haylee Bug, I am so encouraged by your message! We just stopped the Nexium and went to straight Zantac. She seems to be having a lot of reflux trouble tonight but I am hoping that will get better after a few days of medicine. You said it took a few days, was she really uncomfortable during that time? I am so hoping that this will help us, the PPI's have not been that helpful. She actually does not seem to have heartburn on them but she just won't eat, who knows why. Would you mind telling me the doses that your daughter took? I know it is based on weight so maybe the weights too. That is not too bad to have only increased it twice in 4 mths, I have heard some people have to increase it monthly. My daughter weighs about 16 lbs and they gave her 1.2 ml, three times a day. I hope that is a good dose. Her ped GI is pretty good, she said to give it 5 days and then we will do something else. She refuses to eat so much that we can't wait too much longer than that. I was even thinking of her taking a really small Prevacid dose, maybe 1/4 solutab in the morning and afternoon and then taking a Zantac dose at lunch and bedtime. I thought that might give her some PPI to get better acid control but not too much that it affects her appetite. I sure never knew there were babies who didn't eat, dd1 was a total pig!
Mar 24, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
The MAX for Zantac is 10mg/kg. They usually don't start with the max though. So if your little one isn't better, it usually can be increased up to the max then further adjustments can be made as s/he gains weight...
Mar 24, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
PS-mine was an unlucky one and for the short time she tolerated it (we tried flavoring but it was nasty too) she needed weekly dose increases!
Mar 25, 2010
haylee bug
Mother of a reflux baby
infant reflux and sleep
It's hard to actually believe this (I thought it wasn't possible), but I can't really remember if she was uncomfortable right after the switch. I know it can take several days for the PPI's to leave the system. I do believe when we first gave her the PPI's it was the best choice; it seemed to heal the damage that had been caused, but overtime it just seemed to make her worse. After reading about the medicine and talking with our new doctor I learned PPI's really are supposed to be used long term. (but I can't knock it if it works!!!). Haylee was five weeks early so the doctor said her excessive crying could be a combination of reflux, her trying to adjust to the world, and her personality. The funny thing is she still crys when things don't go her way, but rarely does she cry from discomfort. Luckily it's easy to distinguish between pain and not getting my way now. For the first four months she cried on average 12-18 hours a day. After four months it decreased greatly. Now she just whines more then anything so I feel pretty confident that the medicne and development worked in my favor. Right now we are having a minor set back with a little more reflux, but she's cutting her first tooth. (It's not nearly as bad as the first four months though). On to the dosage. We started Zantac when she was 3 1/2 almost four months at .5 ml's twice a day. We quickly had to increase to 1 ml twice a day. That lasted for about a month. Again we quickly had to bump her up to 1.2 ml's twice a day. (At this point I was starting to panic). Luck worked out my way and she balanced out. She's was on that does for about 1 1/2 months when I talked with the talking about testing out a decrease. For the past month she has successfully taken 1 ml in the morning and 1.2 in the evening and is currently 15 pounds. I'm going to keep her at that dosage for now, at least until her first few teeth come through. She also started sitting up alone so I think that combined with the teeth has attributed to more reflux lately. I really hope it works out for you. I know how terrible it can be trying to find the right combinations of medicines and formulas for refluxers. Ellie~
Check with your
doctor first!