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I cant take it any more! my boy is waking up every two hours in pain and i cant do anything about it!! i have him on 10mg losec morning and night and it was working for a while but now it isnt! his chest is wheezing again and when he wakes up he is constantly swallowing and his head is just sweating all the time at night! I am avoiding fruits and veges for him as that is super bad! and all he is eating is egg custard, baby yogert and baby rice with forumla! try to give him some meats too!
i am waiting to see the peds again and have started a chart to see how often he feeds (eg breast and food and what to see if i can see a pattern) but i just need some bloody sleep. am at the point where i am swearing at him at night cos i have just had it and i know that its not his fault. he just wants to be in my bed with me and then he just moans and wants to sit up. am not sure if i should up his meds or not and my doc and peds have said that he sould only have what his is haveing but when i am up at 3am after no sleep and have to dose him with adult mylanta to help i dont think so! HELP I CANT TAKE IT ANYMORE! what am i to do????
hi I’m laura
!welcome!
please take/find the time to read my welcome/intro as it should address many of your questions & concerns!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;am p;am p;PN=1&TPN=1
glad you found us
!everyone here is amazingly wonderful!
I’m sorry to give you a ‘cold’ welcome, but after you click on the above link and read through the info, you’ll learn that I’m quite ‘warm’, lol- I put together the welcome/intro to help all of you newcomers, especially those like you who are going nuts
…~laura
ps: as you read from the link above, you’ll see info about mspi (milk soy protein intolerance) – something to consider?
hey there…what is mspi?? my boy also use to have mucus in stools when he react badly to food. i try and stay away from soy cos it activates him bad and me as well but dairy seems to be ok. talked to the head of reflux society in nz yesterday and she said that it does sound as though he needs meds uped and they never even told me (peds) they just left me hanging. so got a meds schedule and take to my gp today and demand something done. i was naughty last night and gave him extra and he slept better than he has in almost six weeks and his head sweats were gone! i give noah his losec in food and i wasnt told until yesterday that he needs to have it in something acidic to activate so i gave it to him in apple! i am so mad at these peds that they havent given me the info. none of them thought to say with his increased body weight that we would need to up and now that i think about it his weight has increased dramaticly in the last two months!
Im going to be going into my docs surgery today and roaring fire ill tell you that much! and if he doesnt listen ill be continuing to do it on my own! the peds are unbelieveable as they were only talking surgery rather than controlling through meds. sometimes we are so backward over here!Thats odd, cause Eden quite frequently has a sweaty head! I thought she was just hot, but giving less clothes doesn’t really make much difference!! Hi Kiwimum by the way! we r all thinking of u
Just wanted to ask if the head end of his bed is raised, cause he will be real uncomfortable if not!
Also, to be honest i used to just leave Eden in bed with me, and let her nurse all night!! It was the only way that i got any rest at all! I do really feel for you, cause the night times are always the worst! (i ended up screaming at my DD on many occasions, before i gave up and let her sleep with me! Sometimes you just have to do what u have to do! Don’t worry about spoiling him, if hes screaming then he obviously wants to be with you!! (not that thats how you feel sometimes i’m sure!
) I say just do whatever it takes so u get some sleep, cause everything seems so much easier when u sleep!! Take care x xHi Rachael,
Glad you found me so I could find your post. Hmmmm…this sounds exactly like Lucas several months ago. One thing is lovemysophia’s post to you about MSPI, it was the thing I was talking to you about a few months back — about removing all dairy and soy from his diet (and yours since you are bfeeding) to see if it makes things better. I know at one point you tried lowering the amount of dairy you ate, but have you ever cut all dairy for you and him? This would include yogurt, cheese, milk, and all things with milk products as an ingrediant. Also, soy is commonly part of htis as well, so that would mean no soy, soy milk, etc. You get the picture. I waited until I was in your shoes and Lucas was 8 months old and I was TOTALLY LOSING MY MIND before cutting dairy and soy because I thought it would make me crazy to do that. Well, I found some other things to eat, and Lucas was SO MUCH BETTER. So, that’s the first thing I would investigate. Here’s a great web-site that explains it all:
You had the ph probe done a while back, right? What were those results? Did he have an endoscopy? My thinking is this, cut the dairy and soy immediately, and if that doesnt’ make any changes within three weeks, then you really should push for testing to be done, if it hasn’t already. By testing, I mean a ph probe and an endoscopy. They are invasive, but with Noah’s age, resp problems and healthy weight, you have all the factors to demand testing be done. His crying out so often is so familiar and sounds to me like he might have some esophagus damage– esophagitis– so that every time he refluxes (which is often, it sounds like, at least at night) it really hurts him. Getting on a proper dose of a ppi drug should help this out.
Is he walking yet? Walking may help things a lot. Lucas walked around 14 1/2 months and it didn’t make all the problems go away, but we’ve seen a very gradual improvement (and I mean VERY GRADUAL, but I can tell that things are slightly better). Also, how much does he weigh? Can you check out hte MArci-kids web-site to see if his Losec dose is considered appropriate for his weight? http://www.marci-kids.com
You can email the [email protected], or put a post under Medicine on this forum for Joel (RefluxSol) who works with Dr. Phillips at the Univ. of Missouri. If Noah’s ppi med (losec or similar med) is really off, or really underdosed, Dr. Phillips might be willing to communicate with Noah’s doctors about upping the meds (he did this for me with Lucas’ doc). Dr. Phillips developed a ppi med called Zegerid, which is on the market in the US, and similar to Losec, and knows about dosing, etc. He is also an advocate of appropriately dosing– which for many of us translates into “higher dosing.”
Is he sleeping flat? Try to get him on an incline if at all possible. I started sleeping with Lucas when things got to where you are. I was losing my mind and hallucinating during the day at times. It was miserable and I was really losing it. I started sleeping with him, not wearing a bra to bed and I would literally roll over as soon as I heard him cry and let him nurse. I learned to nurse him laying on my back (this might be too much info– but seriously, it makes a difference!), so he was kind of laying on his tummy across my body, or in a little crouch with his legs tucked under him next to me and could nurse nad I could fall back to sleep again. This has also meant that I haven’t slept with my husband in bed at night since last April. That’s been a real change of plan, but we both understand it’s temporary and it’s a means to an end. I really didn’t have any other options as I was going nuts and my husband has been very understanding our our “unique” situation.
Did you ever get any Mylanta Cherry Supreme? Do you guys ahve carafate over there? Do you still have him on Zantac (maybe it’s called ranitidine in NZ)? Some moms have used the ppi drug like Losec along with zantac nad that’s helped them. We used carafate before bed when things got so bad like what you are describing (this was in addition to a ppi drug and mylanta as needed). It’s an older med and coats the stomach– it really helped us when Lucas was waking every hour.
Is it possible that he’s teething? In my experience (and our ped and ped gi say this is “normal” for a terrible refluxer) teething has been ABSOLUTELY HORRIBLE for Lucas’ reflux. I won’t go into details as this is already super long, but the teething makes the reflux ten times worse. When he’s teething, after a lot of trial and error, we now give him Hyland’s teething tablets, children’s motrin COLD (which has a pain reliever and decongestant), and children’s benadryl (an antihistime) all at the same time. The antihistime and decongestant seem to help and the motrin is an anti-inflammatory drug that also helps for pain. The Hyland’s teething tablets help him so much, too. This has taken his teething bouts from unbearable-I-want-to-give-you-away experiences to — fussy baby that is difficult but possible to handle. The ped and I came up with the combination of pain reliever, antihistime and decongestant at the same time. He said it was fine to give all three types of meds at once with proper dosing.
I can’t think of anything else right at the moment, and we’re still dealing with night wakings, so it’s not like I “figured it out” or anything like that. But things are slowly….very slowly getting better. Your nights sound EXACTLY what our really bad nights were like for so long. Write back and we’ll see what we can help you come up with for a plan. I’m so sorry that htings are worse again, I was thinking about you the other day and figuring things must be better since I haden’t heard from you.
Hang in there, I know how it feels.
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