on meds and still sounds like this

[Anonymous]

my bubs is 7 mo she has been on losec since about 6 weeks old and maxed out on that for the last 2 months .. she still suffers from severe back arching .. and throws herself around screaming . and relfuxing still..

my question is though .. if her meds were working should she be still doing this .. i mean they are workign to a degree ie we notice if we are late givign them to her .. but she still refluxes and she still has screaming bouts.. the back arrching she will do all day everyday .. and even in her sleep.. she still has about 30mls of gaviscon a day .. jsut to help ease her ..

i want to help her but i dont know how anymore ..

[Anonymous]

Hi,

I suspect she still is in a lot of pain and needs her meds reviewed.

I am wondering what maxed out on losec is. I’m an Aussie and 10 mg is about all I was ever prescribed by my paed. It didn’t do squat. Eventually I went to my GP who prescribed Zoton (which is prevacid in the US….paeds in Aus will not prescribe it generally). He upped her to 22.5mg (which I upped to 30mg!). She did amazingly on this.

I presume you were on Zantac first. We did both zantac and zoton for months. Just need to space them 4 hours apart. You could try doing both (just a personal experince, I’m no Dr)

Also are you giving the losec at least 30 minutes before feeding ( they don’t seem to tell you to do this but it seems to really help…there is a technical reason which you will find at marci-kids.com…which of course no Dr in Aus knows anything about!)

Until Alana was a bit older I never had much luck with Gaviscon and found that Mylanta helped more, but I would probably try adding the zantac back in first. Oh, and most Drs underdose this so if you post your bubs weight someone will help you calculate dosages (again with the caveat we aren’t Drs but we sure do our research!)

PM me if you have any specific Aussie questions…it took me awhile to work out the Aussie names versus the US/Canadian names for things.

The other thing I’m wondering is if there has every been a suggestion she is milk/soy intolerant? Lots of babies with reflux are and they are often helped by either a special formula or a special diet for mums lucky enough to be breastfeeding.

Hope we can help.

Therese

[Anonymous]

thanks so much for you reply .. she is on neocate full time .. she has severe cmpa ( and possilby fpies (food protein induced entercoloitus sydrome) .. and we are still working it all out . she is on 30mg losec atm .. as i said it works but she is still having a lot of pain .. i jsut cant seem to get anyone to take me serously .. i hate seeing her like this ..

[Anonymous]

Is your losec a compound, or the MUPS or capsules? How do you give it? That could be part of the problem. (I found that few people knew how to tell me to give it correctly.)

[hellbennt]

my baby had sandifer symtoms & they went away when he was properly medicated- that’s how I could tell when he needed a med increase…

[Anonymous]

she is on the compound .. and we get it refilled every 14 – 17 days .. we know it genereally works but atm . she is having a flair up for some reason .. ??? but then again .. we have started food trials too .. so that would be the main reason i guess

[Anonymous]

It could possibly be the food trials then. But if thats the case maybe you could add zantac back in?

Do you give the losec all at once or divide it. Some mums have found benefit in three doses a day?

[Anonymous]

the gi has her on 2 doses – am and pm .. it was actually working really well .comfort wise . she was till refluxing quite bad but she wasnt like she is now.. so i suppose maybe it is just the food trials.. but i will ask about adding zantac on top of what she is on .. someone else told me that she should try that on top .. but her pead wasnt keen on the idea.. ?? but i will chase the pead gi up next week again ..
thanks.. i just hate to see her throwing herself around

[Anonymous]

I’m glad that the compound was working before. You might want to check out the thread about compounds stickied in the medications forum. I persnally don’t like compounds much, only because they never really worked longterm for Hailey. I found that they were difficult to get them made correctly, and that they added all kinds of things to them. Is yours being made with any flavouring? If so, that could reduce the effectiveness of the med. Anyhow, I’m very biased… just had a very hard time with getting the losec compound done right. Maybe she needs her dose increased while you’re doing the food trials? Or can you try some mylanta supreme in the meantime?

[hellbennt]

compounding from lori: https://www.infantreflux.org/forum/forum_posts.asp?TID=7855&TPN=1

[Anonymous]

I’m glad you have been able to get to a pead GI. If he/she does agree to the Zantac you could ask for the Zantac Efferdose….it is a lemony flavoured tablet that disolves in water and is so much better tasting. If you do the Zantac it seems most people space it 3-4 hours apart from the PPI. I wonder whether it might be also worth asking about the 3 doses (although if you do zantac as well you will have timing nightmares!!!!).

[Anonymous]

wow .. i think i am going to have fun trying to keep her medicated correctly .. thanks for the suggestions everyone ..will see how i go this week with the gi ..

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