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Jesus I just realised my mistake, I was thinking 10mg/ml and typing 30mg/ml. I was wondering what you were on about, derrr... I am so sorry, lachlan was at my heals and whinging. Sorry I must have been equating the total amount in my head and typing it. And I didn't think I had baby brain lol.
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LOL that makes more sense! Do you find a lot of relief on the 10mg/ml solution? And do you get it for the whole month and do you notice a difference when you get a new bottle etc?
I am just wondering if you got it compounded to 2mg/ml which is the recommended dose then it may help his symptoms a lot more.
How the compound is made is the losec and a proportion of sodium bicarb, what the role is to neutralise the acid on the way down so that the crushed losec doesgn't get eaten by digestive acids on the way down, if the proportion of sodium bicarb to losec is too high, then the losec starts to become ineffective way before its time, so although you think he is getting the 30mg a day, he is actually getting a lot less and that is why even on high doses he may still be getting symptoms of reflux.
Its just a thought, if you wanted to try tweaking it.
It is something to think about since his symptoms and sleeping are bit everywhere at the moment.
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We have been on this dose for atleast 10mths of his life now, geez I never even thought it may not be working. He is fine in the pain department, well I thought he was. He doesn't sleep well at all during the day and at night it is a bit hit and miss, we could have 3 good nights and then it goes back to 1-2-3-4 times a night waking. But who knows it could be teeth too! His eating aint the best but I really just think he is fussy now and not a big eater because he has never extended his belly well enuf to eat like normal babies. I know for a fact the losec even on the lower dosage from 3 weeks to 3 mths didn't entirely work and then we found we did get some relief until 5mths and that is when things went hay wire. But we have been on the same dose for ages now. I remember my paed saying when the CHN gave us the losec and we finally got to see the paed at our 6 week checkup, that the low dosage she gave us (and I think it was 2mg/ml) was not at all high enough and that is when he put us on 30mg per ml.
I am hesitant to play with the dosage as I don't want to make things worse. For the simple fact that we have moved towns and changed paeds and she has not changed his dosage either, makes me think that she is in agreeance with our previous paed anyways.
What are your thoughts?
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Thanks Caro, LOL
Sherrejoy,
The dose as such wouldn't change, only the amount you give him. So if you are giving him 3ml a day of the 10mg/ml compound you would give him 15ml a day of the 2mg/ml compound.
I totally understand what you are saying about not wanting to play with it, and I am not suggesting you just change it, but just ask some questions, first of the pharmacy and make sure they compound it to 10mg/ml and NOT 2mg/ml, honestly you would be the first person I have talked to who has it compounded at that strength and from what I know about compounds I would doubt that it would last out the full month, this could be why you are getting good and bad days so often.
Also on a dose that high, with FTT and from what I have read no other significant problems (pnemonias, apnea, infections etc) then it should be helping with his feeding, I honestly think that he is still in a lot of pain and that is why he isn't eating properly. My son Parker was very similar to your son, and it wasn't until he was about that age and I started asking questions that we started getting some results and he is no longer FTT although we still struggle with his weight some times.
I think that whole 2mg/ml and 10mg/ml may be confusing you, the dose would be exactly the same, it would just be the way the compound is made that could help out more. So you aren't playing with the dose, just making sure that the one you are on is working. I too agree with your ped that with those symptoms 30mg a day, would be a good dose for him.
If you don't feel confident ringing the pharmacy let me know which one you get it from and I can ask the pharmacist for you, just to check if they are doing it to regulation.
Again, I am adding that I don't think at this stage you should change the medication I do think it is working, I just beleive it could work better, changing the medication to a different type could make things a lot harder.
SSmiles, I am pretty sure that Caro wasn't saying it was ineffective just that the way some pharmacies make the compound is ineffective and the product doesn't work properly. For the record I love losec, it has truly saved my babies life (and he is no longer a baby, so sad, he is almost three)
Last edited by scarlet121; July 2nd, 2007 at 08:57 PM.
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Caro, I must say that for us Losec is TOTALLY effective. All babies are different and all reflux problems are probably different in some way too. Losec has changed our lives for the BETTER and when we went off it, all the horrible problems came back. After going back on Losec again our little man was back to his happy, healthy self. He has been on Losec now for almost 7 months (with that horrible break of a month in between) and he will continue to be on it as long as is needed.
So in my opinion Losec DOES work and it works WONDERS!!! It is AMAZING stuff and has made my life go from a living hell to fantastic.
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Lachlan hasn't appeared to cry from the pain for ages and and that is what it is meant to do, neutrilise the acid, so in that regard we are not having any problems. But if you think that the sleeping and eating could be better, I will give it a try????????????? I am so confused now. I have tried so many things in his life time and it just becomes so hard to work out what is working what is not!
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Sheree I think thats the pain of reflux, there are no set answers for every individual. Its all different. Babies react differently to different meds & sometimes they change & the meds don't work etc. Matilda had silent reflux and was diagnosed due to the burns on the back of her throat due to the acid. We used mylanta with no success and then zantac worked wonders... this is 3 years ago. BUT she was on zantac for 9 months... everytime we tried to stop or decrease the dose we met with the pain of reflux. We still had sleeping issues and other behavioural things, but not the pain.
Jovie... well... she's different again. I kept having people tell me she had reflux & I would say "No, I've seen & lived with a reflux baby & this isn't one" She had heaps of the symptoms but not as badly as Matilda. It took a few health professionals to convince me, then I searched for alternative therapies and went to a LC who showed me information on milk intolerance & we were on our way to finding the answer. She hasn't had any meds & shows no signs of reflux at all anymore.
They are all different. I think trialling something for a few weeks is best. You can see if it works & adjust accordingly. Most medications can't work effectively until the intestinal lining has a chance to repair itself from the damage of the acid. So it does take a while. You may see relief from pain straight away but the longer term healing doesn't really show for a few weeks.
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I'm really sorry your having such a tough time...it must be so hard for you and your little man.
I looked after a friends baby who had reflux when she was about six weeks old once. I had her for about six hours and I swear to god the poor little thing screamed all day. It was a nightmare, I don't know how mum's who have to watch their little ones like this day in day out can cope...hugs to you and I hope you can find someone to help him.
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Jac, just going back to your original post, how are YOU feeling about all this? You mentioned that you are sick of crying all the time.
My little one has reflux too, and I, like you, spend most of our feeds (and the rest of the day) in tears. For me, it has gotten to the point where I have sought treatment for myself, not just for my baby, as I was worried that all my stress/depression/anxiety with respect to the reflux was (1) seriously affecting my milk supply and let-down and (2) affecting my ability to bond with my baby.
Are you getting any help for you? Not necessarily pharmaceutical help, but help? Talking to someone? Practical help around the house? Maybe pharmaceutical help if you need it.
I've asked my MCHN nurse to refer me to the child health psychologist, who I'm seeing for the first time this Thursday. Jambin's paed also has referred ME back to my GP to discuss my depression, as she says it's not her expertise, but is obviously becoming a problem because of Jambin's feeding problems and reflux issues. My in-laws also drove down to stay with us for a couple of days, to give me a break and help out with the practical stuff, such as laundry, cooking, minding Jambin while I had a sleep. Having someone help me with the domestic chores helped me have more emotional stamina to deal with the reflux challenges. In my experience, Jambin's reflux has affected me as much as him, and I think it's important to have a 2-pronged attack to managing it.
Hugs to you sweets
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Scarlett/Caro - I have finally got the losec in liquid form but wanted to ask your opinion on dosage and cost. We are on 5mg/ml and so he takes 1ml per day. The chemist has made 1mth worth as they assure me it will last a month (?) so I have 30mls in total. This has cost me $49. It seems quite expensive for only 30mls and is it usual to allow for no error in administeration (ie. if I miss his mouth or he spits it out I only have 30mls, exactly enough for one month)? Why don't they give me a little extra just in case? Does this sound normal to you and does the dose sound OK for a baby new to this medication? I just don't trust the paed.
Cherie - Thankyou for asking about how I am feeling. When my DS has a good day (like today) I feel totally fine, but when he has bad days (which are far more frequent lately) I feel that I am not coping and get very upset. My feelings totally relate to how my baby is going so I don't think it's 'depression' as such (?). I have heaps of family support so am lucky in that way. I just want my baby to be happy and pain free then all will be well. I wonder if that's asking too much.
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Meds can be so confusing, and so can the pharmacies as well. Your compound is 5mg/ml, that means if you are giving 1ml a day, you are giving one 5mg dose a day. So this is correct. Your 30mls is the same as 75mls of mine.
The price also is about correct for a months worth. The reason that you have a lot less liquid than say me, is because your losec is stronger. So that is all fine.
First try it out and see, you may find that the compound for the month is fine, and yes it is a little wrong that they don't give you a bit more, but different places do different things. Watch out for the 2 weeks and see if there is a decrease in symptoms around the two weeks. If so, it is best to get it refilled.
The one thing that I could suggest is to try finding a pharmacy that compounds to
2mg/ml, this strength seems to do a better job, compared to the 5mg/ml because of how it is made and how much longer it lasts. The other is that after the two weeks (around about) generally you start to notice an increase in symptoms, and this is because with time, and opening and shaking etc... the losec starts to become unstable and not work as well, so although it still has some losec in it, the strength of the compound starts to fade a bit, we get ours done up every two weeks, and sometimes sooner, I just go on what he is doing.
The other thing would be the dose, 5mg a day would be on the lowest end of the doses so if he has been on it a while or you are seeing a lot of pain, you may want to look at getting it at least doubled, and see how it goes.
Ring around the pharmacies, the ones at childrens hospitals or hospitals with paed consulting rooms generally make it up, ask the price and whether they do it every two weeks if you want, and try and find one that gives a concentration of 2mg/ml.
Good luck with the meds, let us know how it goes.
This has cost me $49. It seems quite expensive for only 30mls and is it usual to allow for no error in administeration (ie. if I miss his mouth or he spits it out I only have 30mls, exactly enough for one month)? Why don't they give me a little extra just in case? Does this sound normal to you and does the dose sound OK for a baby new to this medication? I just don't trust the paed.
Cherie - Thankyou for asking about how I am feeling. When my DS has a good day (like today) I feel totally fine, but when he has bad days (which are far more frequent lately) I feel that I am not coping and get very upset. My feelings totally relate to how my baby is going so I don't think it's 'depression' as such (?). I have heaps of family support so am lucky in that way. I just want my baby to be happy and pain free then all will be well. I wonder if that's asking too much.[/QUOTE]
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Thanks guys. I thought the dose was correct as the Dr said 5mg per day and liquid was made up at 5mg/ml so I ml a day seemed correct. However it does seem a low dose. Scarlett, I found this on an internet site;
Low dose range is 0.7 - 1.5mg per kilogram per day.
High dose range is 1.5 - 3.0mg per kilogram per day.
Very high dose range is up to 3.0 - 3.3mg per kilogram per day.
Does that seem right to you? If so, we are on lower than the lowest range (DS about 6kg). I suppose I should see how it works over the next month. I see the paed (the one I respect and like this time) end July so will take it from there. DS already sleeping better and happier in general.
One other quick qn scarlett, I am giving 1/2ml in morning and 1/2ml at night instead of 1ml a day as I was hoping to extend the time it works for - is this the best way to go about it with such a low does or should I just give 1ml in the morning??? Seemed to work OK yesterday......
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What you have posted does seem right, but you will find most doctors won't work it out on weight, but more to half or a full tablet kind of thing. Personally at three months old, I would be looking at 10mg a day, especially if they have been on it a while and haven't gotten much better.
The great thing about the med change to the suspension is that it is already in his system so half the battle is won, so maybe that dose will be perfect KWIM?
With the splitting the dose, I always recommend to split it, it makes a huge difference to Parker, so I think you are doing the right thing.
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Well, if that's asking for too much, then I'm asking for too much too lol. I hope both our bubbas end up pain-free soon.
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My son Zane has silent reflux. The local doctor put him on Zantac 2ml to start with and that did nothing, and it was so strong it took his breath away. So we went to paed when he was 6 weeks old and Zane was put on Losec 5mg once a day dissolved in 10mls of water which I syringed into his mouth, I use to give at night but tried mornings as he was unsettled during the day and that did the trick. He also was put onto Soy milk formula and he has been perfect since about a week after paed appointment. He is now just over 7 months and I stopped the Losec about a month ago and he has been fine. I know how you feel its terrible seeing how your baby is in pain, screaming and unsettled and then you feeling like your the only one going through it,I think back now and remember how it was and don't know how I would have got through it without my families help. But it does get better once you have sorted out the medicine and what works for you and baby.
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Sorry Caro, I thought you were saying that Losec was no good for anyone. I don't get my DS's Losec made up, we just use the tablets and it works fine (dissolved in water) so that's the reason for the confusion (that, and lack of sleep on my part).
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Just a quick note about dosage. The "correct" dosage is the lowest dose that is effective and controls the symptoms. If your bubs reflux is under control then I wouldn't worry about what dose other bubs are on or what the recommended dose is. If they are not under control and bubs is on a lowish dose then I would see your doc about getting the dose increased. Also since dose is based on weight, as our bubs grow the dose may need increasing if it becomes less effective.
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Hi there
I'm in Melbourne too. You can get compounded losec at the Royal Childrens Hospital and also at Monash Medical Centre.
I get mine from Monash, it costs $31.50 for 300ml. You have to make sure your doc writes the script in a particular way to get it at that price though - you need two scripts. If your doc isn't sure get them to ring the pharmacist.
I would highly recommend Don Cameron, he is Mr Reflux in Melbourne. He works at the RCH but it is really hard to get an appointment there, much easier at his rooms in Clayton - let me know if you want the info.
I've just done a long post in another thread - https://www.bellybelly.com.au/forums...t=38401&page=4
Good luck!
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