Infantreflux.org | any good in pursueing this?

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April 15, 2007 at 3:01 pm #30573

Anonymous
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Sorry I missed this.

Lauren, I’m glad to hear that Shane’s a comfort feeder. I can honestly say that the feeding aversion is about a million times worse than the reflux, if that’s possible (b/c the reflux is really annoying to deal with as well)!

About Hailey’s cognitive and emotional development, she seems to be on track now. For a long time she wasn’t, and the ped was so concerned about her screaming and crying fits and social anxiety that he was bringing up autism. It turned out that a lot of it was related to her being in so much pain, and also her lack of exposure to other people due to her sleep feeding routine. Now she is a happy child (except at night) and she seems pretty smart too. I do worry about her bad sleep though for her overall development, because I have read a lot about kids who are older doing more poorly in school because of lack of sleep. But I can’t worry about that yet, LOL.

I’m glad that you have a plan with your doctor. My ped was worried about myoclonic seizures for Hailey, so she had an EEG that came back normal, and it was left as being Sandifer’s. Now, after hearing me describe her at night, he’s talking about “sleep myoclonus” aka seizures and another EEG, but I think he’s being a worry wart. We’ll see if I’ll do it again, but it’s not my immediate plan- first the ENT, then the sleep study.

About when to time his meds, this is just my opinion, but I would do the whole dose before bed (since you said that the reflux only bothers him at night).

Kim, Sorry to hear that Kaelyn is such a rough sleeper as well. Hope that you can sort things out.

April 15, 2007 at 5:05 pm #30579

Anonymous
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kim, have you tried the prevacid with kaelyn recently?

and lori, thats great the your ped. is a worry wart… thats much better than one that thinks you shouldnt worry about it!

April 15, 2007 at 7:21 pm #30597

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No, we haven’t gone back to prevacid yet. The zantac seems to help keep things mostly in check. I’d actually like to try prevacid again, but we can’t go back to the solutabs because we realized after the fact that the lactose was in them was causing some of her rashes, so I’m not sure which type I’d want to try, or if it would be worth the effort. I hate not knowing what is the right thing to do!

April 15, 2007 at 7:33 pm #30600

Anonymous
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kim ~hmmm.. i guess is the zantac is fine i would just keep it as it is too.. but if you are looking to switch i would do the capsules.. the solutabs are the easiest but since you cant do it.. the capsules are great too!

and lori or anyone else~ is 22.5 mg’s too much to give at one time??i know most of you only do 10 or 15 mg’s at a time… thats why i was doing 15 @ night and 7.5 in the morning. actually i think i am really doing like 10 in the morning.. its so hard to count capsules.. so i just pour

April 15, 2007 at 9:07 pm #30611

Anonymous
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Lauren,

I’d probably give 7.5 mg in the morning or afternoon and 15mg at night.

I love the new picture of the two of you.

April 15, 2007 at 9:09 pm #30612

Anonymous
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thanks

April 15, 2007 at 9:24 pm #30616

Anonymous
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I SO know what you mean about movement. I call it *wiggly*. Carson just had a horrible time about a week and a half ago. With Carson, it means that something is happening or about to happen. His little body just knows and the reflux gets so bad – and then he is SO BAD at night. It is heartbreaking. I get mad at everyone including God. I know just what you mean when sitting and crying and watching him. It is so difficult.

When I took Carson to our reg doc, of course, there was nothing wrong. I took him to our peds GI specialist and he said his nose was quite yucky – although it never did run that I saw. He said it could be spring allergies – and he suggested Clairitin. OK, I am game, we did the Clairitin. By that Saturday he was so crabby I knew something else was bothering him and went to the Accutecare and sure enough he had an ear infection.

With Carson, I think his reflux is under control — until something like an ear infection, sinus congestion, flu bug, etc happens – then his reflux is out of control and he is so wiggly at night.

I haven’t found anything that helps him AT THAT TIME – when we are up during the night and he is uncomfortable – tried Mylanta, Gaviscon, etc.

Carson is on Prilosec – usually you can get the generic and it is in the Tier 1 of your insurance policy so it is quite cheap. There are little beads in the Prilosec and I give them to Carson in rice cereal (it is supposed to be applesauce). I would try a PPI and maybe Prilosec would work for you. We give Carson 15 mg twice a day ( I have to take 4 beads out of the capsule because it doesn’t come in 15 but it is not a big deal). He weighs about 21 pounds. I give it to him right when he gets up and then 1/2 hour later I feed him breakfast and after his nap I give it to him again and then feed him. I probably SHOULD give it to him closer to bedtime but it is hard to give it to him on an empty stomach – this seems to work best for us.

I really know what you mean about the wiggly, uncomfortable nights and being so angry because there really isn’t anything immediate that we can do to help the little ones. It is so difficult.

I also wonder if you tried Nutramagin for 2 weeks if that would help – BUT it is so hard to get them to switch formulas after they are accustom to tasting one or the other. ?>? It is so hard. Keep us posted.

April 15, 2007 at 10:28 pm #30622

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hey brenda~ thanks so much for the post. we actually did alimentum for about 5 months.. i never knew if he needed it or not, but around the time we started it and when we started the meds were the same time.. and that was also when he started getting happier… so we just stuck to it out of fear! but, when he was 7 mos. we tried goodstart..and he seemed gassy..so i got scared and tried to go back to alimentum ( 3 weeks later)..and he wouldnt go! he ended up drinking half the amount he needed.. soo we went back to goodstart..and he was happy 😉 But, he didnt seem too much different..and i didnt notice a sleeping difference back then.. he was still squirmy on and off alimentum.

but within the past 2 or 3 weeks.. he has REALLY been bad! now waking up more often..and moving much more often.. plus i think his movements are ALOT more drastic now!

with the meds… he is actually on the prevacid capsules.. we do 7.5 ish in the morning and 15 at night. we just started this back up on friday hoping for some kind of change.. or hoping that we could pursue other avenues after discovering that it might not be a pain issue from reflux. i have never noticed a difference when he was on meds before with his sleep… and mylanta never helped either!

thanks again for the help.. and actually you got me to think i should probably get his ears checked! i got them checked 2 weeks ago when he was sick and they were fine.. but boy has the past couple nights been hard! i think i’ll go tomorrow!

April 16, 2007 at 5:48 am #30626

Anonymous
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Lauren I used to give Alana the whole 30mg in one dose. You know from previous posts I have always been a bit naughty with the PPIs. If he is OK during the day would you try and see if giving him the whole dose would work at night?

April 16, 2007 at 7:10 am #30627

Anonymous
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Lauren- I have tried every combination possible- partly because I’ve seen so many docs and they all wanted different things, partly out of desperation to find something that worked. I’ve tried the 30mg in one am dose, in one pm dose, split 15 in the am, 15 in the pm (which is how we did it for the longest time), 3 doses (which never worked b/c I couldn’t administer it). Some feeding therapists/clinics here actually advocate giving it in one am dose to give them better coverage during the eating hours, so I would presume if the problem was sleeping, you could try one large dose before bed if your current regimen doesn’t work. The only thing I’d watch out for is that some people have complained that a large dose before bed causes cramping that interrupts sleep. I hope things work for him. Hailey was so bad two nights ago, that I woke up to find her at the foot of a king size bed, the pillows I put there to block her on the floor, and her head hanging off (on purpose, I think)!

Brenda, if your son’s reflux is flaring, I might consider giving the beads in applesauce following the 30 minute rule. It might make it more effective. Sorry to hear that your son is having trouble at night too.

April 16, 2007 at 7:50 am #30633

Anonymous
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well all i know is the past couple night have been soo bad! and he wakes at like 3:30 and will cry often when he is woken by this mysterious thing.. soo i feel so sleep deprived its not even funny.

should i be noticing any atleast slight improvement by now?? this is only the 3rd day. i think i might try and get in with his ped. and atleast arrange/ set some plans for other testings…. would you guys wait the 2 weeks first? is there any point in adding the extra 5-7 mg’s?? and asking the GI nurse to do that? would i really see that big of a difference you think??? because i really see NOTHING with his sleep.. maybe even worse!

shanesmom2007-4-16 7:51:33

April 16, 2007 at 10:36 am #30646

Anonymous
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Lori: Carson has such a gag reflux – and he doesn’t do well with applesauce. I tried the *pear* applesauce but it seemed to also make him start gagging. Our ped said that the applesauce helps activate the meds but if he is going to gag and throw up before hand it doesn’t help us so much. I just give it in a bite or two of rice cereal and wait about 35 minutes. ??When will this be over??

Lauren: I would try to get in to the ped and make sure that nothing else is going on – ears, etc. It took us right around 2 weeks before we noticed any improvement. Do you have any Zantac that you could start until the 2 weeks us up? Zantac didn’t work real well for us but it would be something until the PPI gets going.

As for the sleep deprivation – it is horrid – I know. I have heard that it sometimes gets worse before it gets better. I sure hope that is what is going on with Shane!

April 16, 2007 at 2:09 pm #30671

Anonymous
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Lauren,

Could you maybe try some pepcid complete at night? (you may already have and if so I am sorry) It helped Brianna.

April 16, 2007 at 2:19 pm #30676

Anonymous
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no i dont have it.. we have regular pepcid.. and take a guess… yes, it doesnt work. even my magic gaviscon isnt working anymore!!

is pepcid complete a lot better?? and how much and how do i give it?!

i think i will try ANYTHING at this point! if you told me to stand on my head for 3 days straight and clap my hands at the same time.. i think i would do it!! ( haha, i am really becoming delerious i know….)

shanesmom2007-4-16 14:20:54

April 16, 2007 at 4:08 pm #30685

Anonymous
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LOL, Lauren! I feel the exact same way- basically if it’s legal and won’t hurt her, then I’ll try it!

It’s so hard to figure out what the issue is sometimes, that’s really why I haven’t tried to wean yet. I know Hailey still has reflux, for the most part, it seems to bother her at night, but I didn’t want to be left guessing if every night waking was due to being off the meds.

Here’s what I would do, but it’s just my opinion- not based on anything in particular: I would get him on the same dose of prevacid he was on before (if that was a good dose that controlled his symptoms), and I would ride it out for 10-14 days before adding in any new variables, like other meds, antacids, gas drops, etc. The only reason is because making too many changes at once can make it even harder to know what caused the improvement. I’d also try to talk to the GI (sorry, can’t remember if you did already or not).

Is it possible that the prevacid is bothering his tummy b/c he’s been off it for a while? I know it takes some babies a bit of adjusting to get used to it. I think it used to give Hailey cramps at the beginning.

Good luck sorting things out.
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