Infantreflux.org | desperately need sleep advice

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September 2, 2006 at 11:19 am #12845

Anonymous
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I don’t know what to do.

DS wakes every 20min – 1hr throughout the night, screaming and demanding to nurse. The only way to put him back to sleep is by nursing. He sleeps in crib with head elevated (we have tried everything- co-sleeping with head elevated and carseat- nothing makes a difference). He has been having these frequent night-wakings since 3 months and they have continued to increase in frequency (he had been sleeping 2-3 hours at a time, then down to 1-2 hrs, now even less).

I KNOW nursing that frequently is bad for the reflux and is habit-forming. But I don’t know WHAT else to do…should I just let him scream until it’s been at least 2 hours since the last feeding?

We’re working with our Ped to get the right medicine dosing for him, but until we figure it out, what should we do? And besides, now he is addicted to nursing to sleep and I don’t know if I should let him scream or not.

Please help! Any suggestions appreciated! What have others done? THANK YOU!

September 2, 2006 at 12:00 pm #12847

Anonymous
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Hi and Welcome!!

Just a thought – are you spacing the Zantac and Prevacid at least 2-4 hours apart? This needs to be done for them to be effective. Otherwise, I would probably guess his dose it too low.

It is so hard on both you and little Elliot. Reflux is no fun but once you finally get it controlled, you will have such a happy little sweetie. Hope you can find the answers and info you need . Meanwhile, do your research and feel free to ask questions – we’re here to help!!

Robin

September 2, 2006 at 1:01 pm #12848

Anonymous
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Robin, yes, I do space the medicine at least 3 hours apart. I am concerned, though, that the prevacid might not be working well because Elliot eats every 2 hours so I am only waiting 1.5 hours after feeding before giving him his medicine, and then when I do feed him I worry he isn’t getting quite enough milk to stimulate lots of pumps so that they can be shut off…he falls asleep during his feedings after only a few minutes since he is so sleep-deprived. i’m thinking of asking my doctor to prescribe zegerid instead so i won’t have this issue.

also, even when I DO wait 1.5 hours after feeding to give him the medicine, once he threw the prevacid up, and milk came up with it, showing that his stomach wasn’t actually empty…

September 2, 2006 at 1:32 pm #12850

hellbennt
Keymaster

your baby is in pain & I say to do what you can until you get his reflux sorted out- plenty of time to break bad habits later…crying aggrevates reflux, plus…poor baby

personally, I think I’d be so exhausted that I’d just put him in bed w/ me until things got better (by this I mean proper form & dosing of PPI)- & i really believe they’re young enough that whatever ‘habit’ they get into, they can get into another ‘habit’ later down the road…

hellbennt2006-9-2 13:32:58

September 2, 2006 at 1:45 pm #12851

Anonymous
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7.5 mg three times a day is a pretty good dose. Of course, there’s room to go higher, but it’s a decent dose. With the zantac, I would think it should be working. Is it possible that he’s allergic/intolerant to something else that you are eating? Have you tried the elimination diet? I ask because Kaelyn was very much like Elliot. She would want to nurse frequently and would fall asleep while nursing then she’d wake up screaming 30 to 90 minutes later. I eliminated milk and soy and then gave up on nursing (for other reasons). When we switched to nutramigen there was a huge improvement. We found out later that she was allergic to wheat and apples, and I hadn’t thought to try eliminating either of those from my diet.

September 2, 2006 at 1:56 pm #12852

Anonymous
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hi there—my baby had reflux so bad that she was one of the few that required a fundo because she was getting so much damage and was failure to thrive. there was a period of time when the only way i could get sylvia (and myself) some sleep, was to lay on my back with her in the crook of my arm. i would get her latched on and just let her fall asleep nursing. we both could get some sleep this way—-as long as she was latched on. i think the constant nursing soothed the pain, and when i layed on my back i didn’t worry as much about rolling over on her.

also, have you tried putting your baby to sleep on his stomach? this is a much better position for a reflux baby—–in fact, our ped gi just told ME that sleeping on my stomach would be best for my reflux—-too bad my neck bothers me so much or i’d do it!

September 2, 2006 at 3:02 pm #12855

hellbennt
Keymaster

the elimination diet info is linked to from 2 stickies:

sticky #1) the top sticky post in the ‘Introduce Yourself’ Forum &

#2) the top sticky post in the ‘MSPI’ forum

This is from the American Academy of Pediatrics & how they recommend that tummy sleeping is best for GERD babies. http://www.aap.org/new/sids/question.htm (thanks Sherry & Christine!)

There’s a monitor that you can use called the Angel Care Monitor that many of the parents on this board have had great success with. Jonah was sent home with a monitor from the hospital, so I don’t know firsthand about the Angel Care monitor, but here’s all about it: https://www.infantreflux.org/forum/search.asp?KW=angelcare&am p;SM=2&SI=TC&FM=0&OB=2

BEANIE BABY: for day time naps I suggest this: Try putting him on his tummy & put a beanie baby on her back for 2 reasons- to see that he’s breathing (the beanie baby will go up & down

)

& for the weight- put your hand on his back & then slowly leave it & the beanie baby is there instead…

For sleeping, there’s also the Tucker Sling that people rave about: https://www.infantreflux.org/forum/search.asp?KW=tucker&S M=1&SI=TC&FM=0&OB=2

as well as the Amby Hammock: https://www.infantreflux.org/forum/search.asp?KW=amby&SM= 1&SI=TC&FM=0&OB=2

~laura

September 2, 2006 at 8:39 pm #12862

Anonymous
Inactive

I agree that trying the Elimination diet would be a good idea. He may have some food sensitivies/allergies that you are not aware of.

Also, with the frequent nursing Zegerid really would be a better choice. He’s probably not getting the full effect of the Prevacid because his little tummy is probably never empty enough when he gets it and then he doesn’t a “full meal” that is required to turn off the pumps. That’s why the researchers at http://www.marci-kids.com created Zegerid. It doesn’t have to be timed around meals.

I agree about tummy sleeping, too. It’s been said to be best even by the American Academy of Pediatricians for reflux babies. You can look into getting a monitor for peace of mind.

Good luck.

September 3, 2006 at 3:34 am #12872

Anonymous
Inactive

Your post has taken me back in time to Jason’s entire first year of life. I dont know how I got through those sleepless nights, if it wasnt for this site I dont know where we’d be right now!! I agree with Laura, your baby is in pain and you should do whatever it takes to comfort him. Have you tried a pacifier and rocking? How about more mylants at night?? He just needs the support until the meds have his reflux under control. I wouldnt let him cry though, as he is truly in pain, and crying will only make the reflux worse. poor baby. Hang in there, it will get easier, I didnt believe it when I was in your shoes, but it’s true!! The support on this site is priceless!!!

September 3, 2006 at 3:28 pm #12877

Anonymous
Inactive

Thank you very much for all of your advice/support. I have just started the Elimination Diet- do you know if potatoes/sweet potatoes are okay to eat? I couldn’t find info about them…

Last night was the scariest yet- I had brought him to bed with me to see if that helped, and one time when I woke up I could tell something was wrong- he had refluxed and aspirated the fluid and was choking- he stopped breathing for about 10-15 seconds and his face was all contorted and then finally he started making this awful wheezing/choking sound. His breathing was very ragged for about 10 minutes after, and even today he sounds congested. After this happened, I kept him upright on me all night long, watching his breathing. What should I do if something like this happens again? Will he always be able to start breathing again eventually? It was so scary.

His reflux has definitely been worse this last week. But then when I read about the elimination diet I realized I ate a lot of potential allergens this week- tons of cinnamon, strawberries, wheat, and more. So hopefully now that I’ve cut those out there is a chance things might get better?

And first thing Tuesday morning I’m going to get my pediatrician to prescribe Zegerid instead of the Prevacid so that I can be assured the PPIs have a better chance at working.

Thank you everyone for your support.

September 3, 2006 at 3:46 pm #12878

hellbennt
Keymaster

*Elimination diet (for breastfeeding): http://www.askdrsears.com/html/4/T041800.asp – this is when you eliminate foods from your diet to distinguish what foods may be upsetting your baby. It is very difficult, but it made me feel better because I knew I had tried ‘everything.’ The most common ‘triggers’ are dairy (all dairy including ‘hidden’ dairy) & soy. Jonah was born w/ an immature valve (LES = Lower esophageal Sphinctor (sp?) & while I did find items in my diet that affected him (tomato products, eggplant & tuna- weird I know), my diet really wasn’t an issue, on the whole. This diet can help you determine if your baby has MSPI (milk soy protein intolerance).

Here is a discusion about the elimination diet- scroll through to read all about how others have done this: https://www.infantreflux.org/forum/forum_posts.asp?TID=2852&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=1

http://www.users.qwest.net/~fsdebra1/wweelim.html all about elimination diet-what to eat & more!

Elimination Diet (breastfeeding your GERDling): https://www.infantreflux.org/forum/forum_posts.asp?TID=2852

Breastfeeding & reflux: https://www.infantreflux.org/forum/forum_posts.asp?TID=2942&a mp;a mp;a mp;a mp;a mp;a mp;a mp;PN=0&TPN=1

breastfeeding diet for reflux: https://www.infantreflux.org/forum/forum_posts.asp?TID=1175&a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=oil

Elimination diet: https://www.infantreflux.org/forum/forum_posts.asp?TID=2852&a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=elim

there’s a breast feeding support group at yahoo where they are really into discussing diet :http://health.groups.yahoo.com/group/breastfeedingreflux/ & one of the moms from that group has her own page: http://www.users.qwest.net/~fsdebra1/– she’s the moderator of the group, so you might want to start there

dr. sears elimination diet: http://www.askdrsears.com/html/4/T041800.asp

http://www.users.qwest.net/~fsdebra1/wweintro.html all about elimination diet-what to eat & more!

article to help figure out how to reintroduce food from elim diet:

http://allergyadvisor.com/Educational/December_2.htm scroll down to ‘C’ orange/mustard box-it’s the SECOND orange/mustard box

September 3, 2006 at 8:25 pm #12892

Anonymous
Inactive

Good luck with your doctor’s visit on Tuesday. I hope he gives you a script for Zegerid. I think it would be a lot easier and work better for a young baby who is nursing so frequently.

The aspiration experience must have been terrifying. Tummy sleeping would probably be much safer for him at this time. Even the AAP recommends tummy sleeping for severe refluxers. You can look into getting a monitor for him to be on the safe side. I know there are moms here who’ve done that for their refluxers. I was fortunate that mine rarely aspirated so the inclined mattress and sleeping on their side was fine.

Good luck and please keep us posted.

September 4, 2006 at 11:05 am #12911

Anonymous
Inactive

Kaelyn had issues with choking on her spit up and turning blue. Her ped claimed that babies will just about always be able to clear it themselves, but he did admit her to the hospital for observation. After that, we put her to sleep on her tummy and she had a pulse oximeter just in case.
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