Sleep Help!!!

[Anonymous]

Good morning! It has been a month or so since my last post. My son Keemy is now 4.5 months old and suffers from protein intolerance from milk and soy as well as having severe reflux based on an Upper GI that was done.

Currently, he is taking 11.25 mg of Prevacid. (7.5mg in the morning and 3.75 in the evening) He is using Nutramigen AA formula right now with a little breast milk, which we are weening him off of as he does not seem to like it as much.

Anyways, over the course of the last few months Keemy is always twisting and turning and waking up every two hours to be fed. With the severe reflux I can understand having to feed him frequently as he does not get the kinds of big feedings a child with reflux does not have. However, the twisting, turning and crying in the night is continuing and even last night my wife or myself were up with him all night long. When he was sleeping, he was turning, fidgeting, and just going on about in a nervous fashion.

That all being said, is what I am describing normal for a severe reflux baby? Is there anything we can do to help Keemy out at night? He is sleeping in our bed on an Acid Reflux Pillow but he is always moving and it is hard on my wife and I. Also, for those who have experience with a child who has or had severe reflux, can you give me a timeline on when things got better for him/her? Did it take 8 months? 1 year? 2 years?

Thanks in advance!
Tom

[Anonymous]

I might not be any help but maybe you can help me Your son sound a lot like my son. My son is suspected to have an intolerance to milk and soy. He is breastfed and has eczema, mucus in his stool, his eyes are puffy ect. I eliminated dairy and soy and wheat and it isnt getting any better. I noticed you said your son was breastfed. Did he not respond to the breastmilk? I have thought about trying something like nutramigen but wonder if it will make any difference. Just curious about your son.

As for the issue you are having we have the exact same problem with sleep. I could have wrote your post. My son is thrashing all around his crib rubbing his face ect. My son is also on prilosec twice a day. My doc seems to think the thrashing is still related to the intolerance not to the reflux?!

[Anonymous]

This situation we are both in is very tough on the child and on my wife and I. I feel your pain. As for Nutramigen, it has helped immensely. Before starting him on that and my wife changing her diet, Keemy was crying all the time. Morning, afternoon, evening he was always crying and we had no idea what it was from as our now former pedicatrician told us he was just collicky and that things would get better. However, after going to a Pediatric GI specialist at the University of Chicago, she told us there was an issue with the protein in milk and soy and started him on Nutramigen AA and it began to work almost immediately.

My wife still breastfeeds but is going to be stopping soon as Keemy is not liking her milk as much and it has gotten harder with my wife going back to work and such. The changing of her diet helped, but I am still of the belief that it is nearly impossible to eliminate all milk and soy products. We read labels and try really hard but sometimes I get the feeling that there is still an issue with the breastmilk. I am not advising you stop the breastfeeding but at some point you have to ask yourself if the breastfeeding is doing your child more harm than good. My wife and I are not in agreement with this topic right now as she wants to continue and I do not.

The only negative about the Nutramigen is that it is expensive. It costs about $170.00 for four 14.1oz cans of it with shipping. However, if it helps your child and such it is money well spent in my mind.

Your son and my son sound the same with the sleeping. Does he sleep at all during the night? Does he ever take naps? My son rarely takes naps and does so for only 20 minutes or so in our arms. He is always moving his arms and legs and just seems to be restless in general. Did your doctor give you any suggestions to help the sleep or did he/she just say that with time it will get better?

The last thing I will tell you and I say this to my wife all the time….stay strong and stay positive. Things will get better. We have gone to many doctors and all of them tell us this is not a problem that will inhibit his development. Rather this is a nuisance for the baby and for us as parents. I can’t tell you when it will end as I am wondering the same thing but know there are people out there and on this board that are here to give advice and lend an ear. We are all trying to help each other and we will all make it through this tough stage.

[Anonymous]

I think most would agree that your prilosec is probably not compounded correctly, and probably not a high enough dose based on the symptoms that your lo is still showing. There are many other choices for meds that you can try, and you should talk to your dr about the dose as well. I think there is a lot of info in the groupie intro thread.

That being said, my lo has been on high doses of meds and we have tried prilosec and prevacid with bufferbabies and with solutabs to no avail. He still wouldn’t eat or sleep well. He is a very fidgety sleeper and I think a lot of that just has to do with the physical sensation of the reflux, even if it’s not “pain”. We are now trying zegerid…omeprazole just like prilosec, but you mix it every day so it is fresh. Maybe ask if you can try that?

There are no short answers or quick fixes for this…the only comfort is that as we try and try to help them be comfortable, nature is doing it’s thing and they are growing and hopefully growing out of the reflux! Hang in there!

[Anonymous]

Just skimming quickly but I would first off look at marci-kids.com and look up the dose, it sounds low to me. 2. I would look into getting solutabs as the compounds don’t generally work well. 3rd I would try some cherry mylanta supreme up to 5ml spaced over the day to see if that gives relief. Hopefully some other moms will chime in as well.

[hellbennt]

sleeping is often a big key to what is going on, as is poops and of course crying & fussiness, etc…it might be time to try neocate or elecare (chicagotom) to see if after 2 weeks sleep improves any. if sleep does improve, you can try and get insurance to cover the neocate…

as for the breastfeeding mama: there are many posts and lots of support on here if you’d like to continue breastfeeding and you need help with your diet-there have been many successful breastfeeding mamas here…

[Anonymous]

My 7 month old does the exact same thing at night as your little one. Tossing and turning, and crying, waking up on an average of 6 times a night. He’s never content at night. It’s hard to explain unless you see it for yourself, but it sounds like our kids are going through the same sort of thing. He hasn’t slept through the night yet!

My biggest question through this entire reflux experience has always been “why are nights so aweful for my little guy”. Nobody has yet to answer that question for me, not even the doctors. They just say that it’s common among babies with reflux for it to be worse at night. Well, give me a freakin reason why!!! It sucks!!!!!

I sometimes don’t know how I do it. I don’t remember how it feels to sleep for more that one or two hours at a time. It’s really crazy. I’ve stopped complaining to my friends and family about it. Unless you’ve been through this situation, you can’t relate. Now I just take it one day at a time, and know that it will all be okay sometime soon . . I hope :o)

In your post you asked about the reflux getting better. I have to say, in the past 4 weeks or so, Drew’s reflux has gotten much better, the night time thing is still the same, but the days are better. On average, he spits up probably about 6 times a day now. And, it’s a lot less quantity than before. I have to tell you though, he was at his absolute worst at 4 and 5 months old. It totally peaked then. It was horrible.

Anyway, I hope you know that you’re not alone. Take it easy, and keep your chin up.

Ann :o)

[Anonymous]

Hi, sorry this post is late, but I want to try to answer your question about crappy sleep at night for refluxers. When I was in my last trimester of pregnancy with my 2nd baby, I had severe reflux and apnea during the night. Only then did I truly understand what kind of pain my poor little boy (first born) had gone through in his first year of life. At night, when you lay down flat for longer periods of time, the acid has more time to creep up and burn your esophogus. Our poor littles babies with no words to express themselves!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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