Posted By Posting
Jun 15, 2009
ellejaef
newbie looking for advice on sleep issues
Hi - I just found this forum and am looking for some advice. My dd is 9 mo. old and was Dx with reflux at 5 weeks. She slept well during the night until 3 months, but never napped. After 3 mos. she woke every 45 mins - 1.5 hours at night. After 2 months of working with her, she started napping sometimes (maybe 40 mins at a time if we are lucky). She's generally a happy kid despite the lack of sleep and pain. The pain makes her cry when she lies down and makes it hard for her to relax. From a very early age, she struggled to be upright. We used a wedge for sleeping with a pillow that kept her still, but a few months ago when she started to move a lot, she ended up wriggling and sliding down the wedge. Now, she prefers to sleep flat, but on her left side or belly. But the real issue for all of us is the lack of sleep. We started on Zantac and increased the dose. It definitely helped, but didn't quite cut it. We switched to Prevacid, but that was like she wasn't taking any meds at all. It was a horrible few weeks. We then went back on Zantac and have now been on Prilosec for about 8 weeks. We were very excited on week 4 when she started sleeping in blocks of 3-4 hours at night. She was relaxed and no reflux symptoms. That was short lived. The pharmacist changed the base of the compound and although we have had him recompound it the old way, etc., we have not been able to recapture that amazing week. We are going to try Zegerid this week and are hopeful. We also discovered a few months ago that her chronic diarrhea was due to a milk protien intolerance - although she didn't have obvious blood or mucous in her stool. (She is BF). I've eliminated milk and soy - although I don't think she has an issue with soy. She's now on solid food and hasn't had any negative reaction to anything I've introduced. She's a comfort nurser and has always been at the 99% for weight. She was 21 lbs. at 8 months. Okay, so our big concern is the lack of sleep right now. It's 4am. She's been up every hour; I nurse her and she quickly goes back to sleep. I'm wondering if nursing through the night is good? It soothes her pain, but maybe it creates more pain? Also, I'm wondering there's an advantage to using the wedge again. I nurse, rock to sleep, then gently put her in her crib once she's asleep, so I don't know if a tucker sling is workable for us. I've been doing all the night care for her until very recently because my dh was working two jobs. Now he'll relieve me at night, but he'll let her cry and scream. I'm at the end of my rope. I'm really having trouble managing without sleep. I need a break, but don't want it at her expense. We have no family nearby or friends to help - we're new to the area. I do pay a sitter to come in during the day for a couple of hours a week. I just don't know how to find the right balance for all of us, as it seems this is going to be the norm for awhile. Any suggestions?
Jun 15, 2009
kubicki5
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.
I am so sorry that the prilosec changed for you -sound like it was really doing the job. I bet the Zegrid will work equally as well. I bet she will start sleeping again once her pain gets under control.

Have you tried Mylanta? This could be used until the Zegrid starts working. It will soothe her tummy and relieve some gas. Pharmacist can help with dosing but my ped. always said 1/2 the adult dose.

Since she is 9 months and has been comfort feeding for so long, maybe it wouldn't be worth rocking the boat with that until you see if the Zegrid works.

Hang in there, I know that sleep deprivation is the worst! When your babysitter comes, is there someplace you can nap for a couple hours? I promise that sleep will come - you are almost there :)

Jun 15, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
Hi, Sorry you are going through so much. We never had luck with a wedge either, my son(now 6) would just slide down. I do have blocks of wood under the head of his bead now. Do you realize that Zegerid is made of the same ingredient as Prilosec? It is just Omeprazole with antacid added, so a little antacid starts working before the Omeprazole kicks in. In our Family our experience has been to stick with one med if it had worked. If the pharmacist is doing it the old way that had worked, why not stick with it, and if you have all traces of dairy out of hers and yours diet, I would go with it for a few weeks. It takes a while for the irritation to heal once it is there. Also, as the other post mentioned, ask about Maalox to help, maybe you could give it in the middle of the night when she wakes up. My son did the same thing, waking up to nurse to comfort himself, it is so exhausting, I feel for you. Will she take a bottle of pumped breast milk at night? What about some warmed up Rice Milk at night or sugar water? During the day, I used to also make homemade sugar water popsicles to suck on for my son(still do when he is flairing). I mix one part sugar to 4 parts water, heat to melt the sugar, then pour into mini popsicle molds to freeze. He also love to sip it through a mini straw in a mug, very soothing. E-mail me if you'd like to talk at 4pas@sbcglobal.net
Jun 15, 2009
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 tends to be a big probelm for most of these kids. WE had NO sleep from week one to month 9, she slept well until 13 months, then didn't sleep well until 19 months again. We still have the occassional sleepless night, but it gets better.

We got permission from our ped to prop her on her left side to sleep, which got us about 2-4 hours at night, which is insane, but it was better than none.

I agree with adding Maalox or Mylanta for nighttime, or dosing the PPI at night instead of during the day. If there's chronic diarrhea, choose the maalox or mylanta with bismuth and not the aluminum/magnesium.

Nursing through the night may be habit now more than need, or comfort feeding, which means that the meds aren't doing what they need to do. Eating helps while it's going down, but then it comes back up again. You really can't do the scream/CIO method until the reflux is under control, since it makes it worse, and no sleep will be had. We slept with my dd on our chests or curled in our arm on her left side.

I'm bouncing all over the place - sorry!!! Basically, it sounds the like reflux in not controlled yet, and sleep training won't work until it is. Keep pushing the docs - they're supposed to HELP, not hinder. The meds need a MINIMUM of 2 weeks to start to work, and even then you may have ups and downs (especially if they're compounded or weight-sensitive). HUGS to you, mama. We're here for you 24/7!!! ;-)

Jun 16, 2009
diana
Hello
I understand your frustration. My daughter is 20 months old and I still don't get a full nights sleep, but I was able to improve her sleeping habits alittle. I never used a wedge because she would always slide down it. I did learn a few tricks though. She slept in a pack and play just until the last few months. I would use the bassent portion of the pack and play and put pillows under it to raise up the head of the bassenet. It seemed with her that the higher I have the head of the bed the better the reflux would be. then I would take towels and roll them into a big U shape. That way her sides would have something to lay on and the bottem of the U would help keep her butt into place. I hope this makes sense but it would at least keep her in place during the night. Recently we bought the comfy lift bed for her and that has really worked for her. Hasn't cured the reflux but we get a few mor hours of sleep at night. I also had issues with the compounds being made for her medicine, but I have found that Walgreens does the best job for us.
Jun 17, 2009
ellejaef
Thanks
Thanks everyone for your advice and encouragement. We did the Prilosec for almost 10 weeks and only had good results on week 4. The reflux symptoms were still there (gulping, etc. - she has silent reflux), but she was more relaxed and slept more that one week. Unfortunately, no matter how the pharmacist has compounded it since, we've been unable to duplicate it. So, we're hoping for better luck with the Zegerid. The Zegerid is much easier because it doesn't have to be refridgerated and it's much more stable because I can compound when I need to. We're hopeful. We have been using Mylanta as well. I give it to her when I put her down to sleep. My husband and babysitter have tried the pumped bottle at night. She is not interested. That's why I don't think it's hunger, but comfort. She really doesn't eat much then anyway. On Saturday I inadvertently ate something with butter in it. I was so upset. I've been so vigilent! But, it was a pure accident. Poor thing - she's had diarrhea and more night wakings since then. But the diarrhea seems to be getting worse. I wonder if it's the Zegerid, the Mylanta or something else? So hard to know. I'll have to get the Mylanta with bismuth. Plus, she is cutting teeth, too. I feel so bad for her. I like the idea of popsicles. I'm sure she'll love that on her gums. I may also try the U shaped towels with a lift. I think I'd like to try some positioning again. She sleeps well in her stroller - if we are moving and outside. She's not so good with that inside! Thanks again.
Jun 17, 2009
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!
Teething makes reflux worse, along with diarrhea and fussiness, so don't discount those meds yet - the extra drool is a constant irritation to the esophagus and makes stools watery (even my dd had loose stools when cutting teeth, and this is the kid who never pooped on her own until about 6 months!)
Check with your
doctor first!