Just wondering if any mom's of long-term refluxers have developed a problem of not being able to sleep after years of broken to occasional non-existant sleep. Before Zola I use to sleep 10 hours a night....those were the days;-) Very regularly Zola will have reflux at night every two weeks when I cycle her off of periactin. It speeds up her motilty a little and has a sleep-inducing effect so when she's off she wakes 4-5 times a night for the 5 days she's off. It takes me days after I start her back on periactin to get to sleep myself, but the best I can hope for is 5-6 hours and that's if she doesn't reflux at night. I sleep too lightly now, everything wakes me up. I've tried camomile tea, but that just make me wake up to go to the bathroom at night. Anybody else going through this? Any suggestions? I can't believe I can be so tired and not sleep....

I don't really have any suggestions, but I have noticed that if my son sleeps and I get a regular nights sleep I feel worse!!! So I usually only go to bed when I am tierd and generally take a while to go to sleep but I just lie there.

What about a hot shower? That sometimes works.

Hi Rachel, I've tried everything....I just want Zola to sleep normally. I am so tired of her off-peri cycle refluxy, non-sleepy state. We all suffer. It is much better than her first two years, and even last fall when she didn't sleep well any night. She mostly sleeps well for the two weeks that she is on periactin. I just want to know if any long timers live like this. The past few months Zola has been growing like crazy, really for the first time in her life, a pound a month (I am really happy about this, it's the first time she isn't "way below the first percentile") the only issue with this is she needs her meds upped constantly. I think this may contribute to her not sleeping this past week, today is our fifth day without much sleep, we are all a little cranky. I just can't believe that I can't recover from this. It's one week of being wakened up at 11:30pm, 1:50am, 3am, 4:30am then 5:15am. I continue that pattern for a few days after she sleeps, then as you said a feeling terrible when you finally get some sleep, and about a week of 6 hours of sleep then it all starts again. Of course my poor baby is miserable when she doesn't get enough sleep. I spoke to her gi about this last January and all she said was to get over it....maybe not in this exact term but it's what she meant. I don't want to sound like I am whining, I'm just so tired.

Gosh, that sounds really stressful. You are definately not whining, please don't think that.

Do you think her GERD is under control? I found that my son who is only 20months, slept a lot better when we switched his meds. What is periactin for? Is there another type you can use that she is better with. We definatly go through cycles of good and bad sleeping, but (touch wood) I think that with the new med we will keep having good sleeps.

What about co-sleeping, not ideal but you may get more sleep, my son doesn't do it well but I have heard others have done better with it.

Another thing is maybe she has a sleeping disorder? My son has sleep apnea but there are a lot of other reasons kids don't sleep, maybe she needs a sleep study to see if there is something in the way she is sleeping, otherwise maybe a pH study to see if when she wakes in the night if it is reflux related.

I think that she is now old enough to be sleeping and that you may need to push the drs a little to get to the bottom of it, ask you GI if she has tried 3 1/2 years of little sleep!

I don't think her reflux is under control once again. She has been growing so fast these days that we can't seem to keep up with her losec dosage. I called her ped clinic this morning, I know her ped has been on holiday all month and will only be back next week. I just wanted to leave her a message so she can call me back next week. The secretary was not very understanding, didn't want to take a message and told me that the doctor never calls her patients, which is not true and to go to emergency, which we all know this is pretty useless. Luckily her nurse at the clinic overheard the conversation and called me back and gave me an emergency appointment tomorrow with another doctor.

This past week has been pretty bad but in general this pattern is pretty normal for Zola. Periactin is an anti-histamine that is used as an appetite stimulant with the side-effect of drowsiness and irritability. We have to cycle her off for 5 days because it looses its effect after approximately two weeks so for 5 days she doesn't sleep very well. It also has a slight motility effect for Zola so when she is off it is pretty horrible. She gets refluxy, has no appetite and doesn't sleep very well. She's been on this medication for over two years now and I find that the side-effects are getting really bad. Of course it's so much worse when her losec dosage isn't high enough.

By 4:30am we drag her into our bed. She'll still wake up around 5am but we can at least respond faster. Usually she wants to stay in her bed (with her 20 toys and 5 blankets) but this week she didn't complain sleeping in my arms in my bed.

There are days I just don't know how much longer I can live like this. I don't like to complain about this, I feel so incredibly lucky to have Zola, since I was told during my pregnancy that she will probably not survive. Even doctors that followed my pregnancy are today surprised that she is alive. It's just I am just so burnt out and pathetic. All I want is a decent quatility of life for my little family and I don't really see an end to this sleeping/reflux issue.

I think that Rachel hit it on the nail when she suggested that maybe Zola's reflux isn't under control. Perhaps a higher dose or a different medication would work. I've learned to get by on so little sleep that the occasional time that I get 7 or 8 hours of sleep, I actually feel more tired than when I've only had 4 or 5 hours. I hope that you're able to get things figured out and able to get more rest.

Maybe she wouldn't need the appetite increaser if her reflux was better, I have found that with my son, as soon as he is on a good med regime he eats again.

What dose of losec? We are on 10mg 2x per day, as wel as 2.6ml zantac 3 times a day and mylanta as needed. For Zola's age she will be able to have more.

I think it is time to get a new GI, this one isn't on your team, find one who wants to help your family.

I agree with all that Rachel said...

I'd find another GI who is willing to find the root of the sleeping issues!

Good Luck

As good as periactin has been the side-effects are getting much worse. Her insomnia is brutal for everyone. Her feeding psychologist was telling me that there are parents who live like this for years. I don't know how they do it. We have been doing it for almost three and a half years and I feel constantly on the edge of burn-out. I keep getting sick over the lack of sleep. You know until today I never thought of stopping this medication. Your right Rachel we have been horribly followed by our gi. I don't understand how a baby born at 1 lb 15 ounces who has gerd, a feeding tube, fft, and serious pain could be discharged from the Nicu with no gi follow-up whatsoever. She wasn't even seen by a pediatric gi during her NICU stay but by one who specialized for adults. He didn't even seem to know what he was doing. She was 13 months old once she was seen by a gi doc, and 20 months old before she was put on losec, and last year when we were weaning Zola off the feeding tube our gi refused to work with the feeding team and to change the way we could give Zola her losec since with all her oral aversions she would vomit the moment losec touched her lips....our gi didn't want to touch what ain't broke, let me tell you it broke. I am sorry for my rant, I can go on forever about this, it still makes me so angry.

Right now she is on 20mg of losec, and I give her maalox before bedtime. I am hoping to get a higher dosage of losec and maybe zantac for the night time reflux. I will discuss stopping periactin with her ped and feeding psychologist. I am curious now that she is mostly well protected with losec how her appetite will fare.

I am doing finally doing something about her care. Until recently I had no idea I had options. Her last ped was totally useless, I didn't even know I could change peds because nobody wanted to take her on when it was time to discharge her. I called 15 on my end and the hospital staff called almost as much and the only one who took would always tell me when I would see her "there there it will get better" and send me home when I would bring Zola in for non-stop vomiting and severe pain.

Thank you so much everybody, it is so nice to get others perspective!

Just to point out I know a mum here who's baby is one and is now on 30mg losec- maybe you wil be able to increase it? I know what you mean about options, before I found this site I beleived that zantac was the only thing people had for reflux, didn't know about testing or specialists... I have come a long way now! Keep pushing, eventually you will get it worked out.

You could try melatonin. A better thing is an SSRI (serotonin reuptake inhibitor) in miniscule doses. In big doses, it is an antidepressant. In small doses, like 10 mng, it can help induce deeper sleep.

I used it successfully in the past.

Hi my name is Sue. My refluxer is 5 and a half. I still can't sleep through the night and am a very light sleeper. My DD has been sleeping through the night (for the most part anyway) The only thing that seemed to help me was ambian cr. I use it for 3 or 4 days to get my sleep schedule back on track. I only take 1/2 because if I do have to wake up in th middle of the night, I can. Sleep and meal times have been misserable at our house, still. but we are slowly getting things better. I hope your road is shorter then mine but every year it does get better.
sue

Thanks Jojo and Sue, I will mention these things to my doctor. I have to find time to see her for this problem. We figured out how to deal with Zola's night time reflux so she really has been sleeping for the past two months:-) Watch me jinx myself;-) I still have lot's of problems sleeping. It's weird, I still wake up occasionally expecting Zola to wake up screaming and vomitting I wonder sometimes if this could this be post-traumatic stress disorder...

I have tried an over the counter sleeping aid, but I have serious problems the next day and I also can't respond if anything happens at night with Zo.

Sue how is you daughter dealing with reflux? Zola is starting preschool this September and I am quite nervous letting her go, especially for feeding and colds. She is finally doing well for the first time in her life. Her meals are still quite structured and we still see a feeding therapist. I am just afraid of the consequences. On a positive note she is desperate to go to preschool and talks about it every day. I do find as she gets older it is so much easier, I love that she can now tell me what is bothering her. It is so much easier to treat her.

I was tortured about sending Savannah to pre-school. But to tell you the truth, it did her good. She had a bit of peer pressure to eat with all the other kiddos. As for the illnesses. I had an extensive talk with the teacher. I took my DD into class and I stayed there until all the kiddos were there. If any of them sounded really bad, Especially coughs, I brought her home along with the lessons they were doing that day. She was in pre-school for two years so the second year I wasn’t as stricked but I still brought her home if someone sounded bad. The bummer thing is that usually meant that she was already exposed but I was able to give her immune boosting herbs and vitamins. I liked Air born. But there are others with more organic ingredients at health food stores.

Good luck with her fist day. And keep in mind it is only a few hours so even if she doesn’t eat it’s not that bad. Feed her on the way or just before you leave. (my DD ate better in the car). And right after you pick her up. You are so not going to know what to do with yourself for the first week. But after that……

Sue

We're 6 weeks away from preschool and I am already panicking. I know it will do her a lot of good, she is incredibly social and I have isolated her quite a bit during cold and flu season. I did try a part-time preschool when she was 2 but that was a disaster, she went 6 times in a period of 4 months, lost 4 pounds when she began with 20 pounds, she had 6 ear infections, 1 gastro. She was skeletal. I really doubt that we are going to go through that again since she is finally caught up in weight and much older but the fear is there. She did get two colds this year with no infection and did not go back to tube feedings. I guess it's just nerves. We have a plan with the preschool that if any epidemic of any kind occurs I will be forwarned and I can keep her at home for a week. I think she will be okay with a regular cold. What you did sounds good, if keeping her away for the week doesn't work I might just do that.

What herbs and vitamins did you give your daughter? I have to look for Air Born, I hope they have it here in Canada. I'll take anything that will make our lives easier. As for having time to myself I think that will be so hard. I am so use to taking care of her I can't imagine not having her around the house. Dina.

I don't think they have ari born in Canada yet. But that was over a year ago the last time I checked. But you can buy it on line. Do you have a healthfood store near you? There are alternatives. I don't remember the names of it right off hand. I am going to the health store in the next week. If you still need names let me know and I will talk with the herbologist while I am there.

We tried day care at 2 as well. Disasterouse for us too. The older Savannah gets the better she deals with bugs. However she still gets hospitalized if we are not prepaird with Phenergin when she gets a stomach bug. We have a running perscription. She does not stop puking on her own. She can even do a mild cough now without puking. She is 5 1/2 and getting ready to go to kindergarden. Yikes!!! Is your DD going to go full time or just a few days a week?

She had 6 year infections in 4 months!! ouch! Did they ever mention tubes to you? Are her ears doing better. I know you mentioned something about that earlier but I can't remember.

We are less then a month away from kindergarden. I am so not ready. Not because of the reflux but because she is my baby. I so wanted to home school but like your DD mine is very social. She also doesn't learn well from me. We butt heads quite a bit when I want to teach her something. So I caved after trying to home school pre-school and I saw the difference between me doing it and her teachers doing it. She trived in pre-school in every area. She can even write words already.

Sue

I'll check and see what we have at our health store. There must be equivalent product available.Thanks! It's just good to know that these things work. I didn't want to medicate Zola even more that she is now. I have never heard of Phenergin for a stomach bug. I have to ask my ped about this. That is what scares me the most. The only time she got it she was hospitalized twice and it lasted 14 days, she had a tube that I could feed her liquids and it wasn't enough.

Our DD's are a lot alike, Zo can now laugh and cough without puking too. She very occasionally gets hiccups when she laughs too hard but we don't have to try to keep her from laughing anymore. Mostly when she pukes it's because she is too excited over something, like having guests over for dinner or picking a nice dress for a resto outing, it never fails, she pukes. Nobody talked about tubes for her ears yet. I guess we'll find out soon enough if she had outgrown this problem or not.

I know that this is silly but I am already a little freaked about kindergarden and we're still two years away so I understand how you are feeling. They grow up so fast. To me Zo is still a baby. I remember so clearly her two-three years with 6-7 hours of feedings a day how I thought that it would never end, I was so miserable. And today my little girl is so much healthier and grown up. I feel on an emotional level I have to catch up to where she is today, she isn't as sick anymore.

My DD is going to preschool 4 mornings a week for three hours. My husband keeps joking that I wanted to home school her to keep her with me as long as possible. But I know she will be very happy at the preschool. When we visited she refused to leave and told us to go home without her! She also refuses to learn anything from me. I was a swimming teacher for years and when I recently tried to teach her a few things she promply dismissed me and told me she wanted my friend to teach her and not me! And if I try to teach her the alphabet I have a mutiny on my hands:-) Sometimes I feel like I have a teenager in a 3 1/2 year old body. I admire her strength and independence. It takes a lot of strength to go through so much pain at such a young age. It's great to hear that Savannah thrives in preschool!!! Writing already at 5 1/2, that's amazing!! I hope that Zola will thrive like your DD at preschool. Dina.