Sick of crying about reflux and why are Dr's so bad at treating it?
This is a bit of a vent really........
My DS has reflux (of course diagnosed by me, Dr's appear to know nothing). After having initial success with Zantac we are now on Losec as the Zantac became ineffective (paediatrician had to look up her book to decide to try Losec and told me to crush tablet - thanks to BB I realise this is not how the med should be given ). We have only been taking Losec for 24 hours but have noticed an improvement in his sleeping. Still have a baby who screams when being fed and after feeds (even though still hungry, hits at the breast and cries). I hate the feeling that my baby is in pain and I can't feed him without making him cry and we both end up in tears everyday. Once settled after a feed (usually half an hour to an hour later) he is all smiles - bit like a muliple personality disorder! Can you believe that my paediatrician told me my DS's sleep issues and unsettled periods were behavioural (at 3mths)? Grr....Anyone have a good paediatrician in Melbourne?
While I'm venting, I have to admit that I am so jealous of all the babies who feed and are full and content after their feed. I won't feed DS in public anymore as people stare wondering why/how I am torturing him. Mother's group IS NOT THERAPUTIC. Ok, I'm done!!!!!
Aww Jac:hugs:
Its so hard isn't it. Reflux is a shocker. Ive looked after lots of babies with reflux and it is both frustrating and upsetting. Now my bub has it, which I was dreading! At the moment we have the same battles with feeds. And I completely hear you in regards to feeding in public. What an ordeal. We have app with the paed. this week so we will see what he says.
I hope you find a solution soon (and a better paed.!)
Caro - I have just had the tablets made up and was only given a script for the one packet (30 tabs) so I suppose I need another script if I want the liquid form. The tabs are troublesome to administer so I would like the liquid made up. Should I ring the paediatrician ofice and ask for another script (I hope I don't have to make another appointment to get it). Does the script need to specify liquid for it to be made up as liquid? SO MANY QUESTIONS!!!
Rang the pharmacy today but Stephen not in so was told to ring on Monday.
Thanks Caro - I will find a chemist that will do this on Mon then ring the Paed and insist on getting another script (well, I'II ask). Does Michael take the liquid Losec OK (he's VERY cute BTW)?
Let me get this right. Are you saying that the chemist uses the tablets or capsules to make the liquid? So you pay for the tabs, then pay for the liquid to be made up. Why is this so confusing.........? It shouldn't be this hard to get the medicine!!!!! What an ordeal.
Sorry to go on and on about it but I want to get it right. Do I ring the chemist (I think the Royal Childen's Hospital chemist does the liquid) and ask them what script I need - tabs or caps, then ring the Dr and get another script????? Good grief I'm going mad. Do you have to go to the chemist fortnightly Caro and if so is this with a repeat script?
Since so many children suffer from reflux these days doctors really should know a lot more about it. My son had reflux and was given zantac and never offerred anything more for a very long time, again they told me to stop the medicine and that it was behavioural, but Parker wasn't my first child and I knew something was up.
Unfortunately a lot of the knowledge that I have on reflux now, is because I have had to research it and not from any doctor helping.
Caro has given some really good advice about the compound. Quite a few pharmacies make it, you are just going to have to do the ring around, also some will make it with the same script as the losec tablets and some wont. Try the childrens hospitals, or hospitals where paeditricians work out of privately, this is your best bet for fresh compound.
I will tell you that if you have stopped the zantac and started the losec, things are going to get a lot worse before they get better, I would keep up the zantac for at least two weeks while giving the losec a chance to work, the zantac will get out of the system in a couple of days and the losec may take two weeks to work, so somewhere in between the baby is unmedicated, this is when it gets worse, and also a prime example of how a doctor should know about this.
Both these medications do different things and can be given on the same day (but spaced at least an hour appart, so it doesn't interfere with the other)
Give the losec at least 2 weeks to see a difference, it is hard but you have to wait it out, generally by 2 weeks, you have an idea if it is going to work, though sometimes it will take longer, also a lot of doctors will tell you it will work straight away but it won't so you give up before it has a chance to work.
I would also ask your GP for a referral to a paed who specialises in reflux and if it gets a lot worse, get a referral to gastroenterologist, they are very good at working things out too.
Good luck, if you need anything, please post, I don't mind answering anything.
I can sympahise we you as we too had a hard time of Severe REFLUX.
They all say it I know - it does get better, but that is so hard to believe that there is any light at the end of the tunnel. I was one of those, until we went to hospital numerous times and saw less fortunate kids that DO NOT grow out of their condition. This was the turning point for me, as more often then not I was so down and out about it all and stressed all the time. But hey who wouldn't be when you child refuses to feed. We went through a really bad patch at 5mths where Lachlan would not feed and would only feed half ok when asleep. He would kick and punch me and would not attach to my boob at 8 weeks, it was so upsetting. So for 2 months he was tube fed due to the fact he was failing to thrive, but not dehydrated because of what I was doing through the night. From tube feeding we were then over extending his belly, so then we have been through an extended period of over extension of his belly. He would power vomit his whole bottle of 120ml. This is why we were in hospital, because initially they were not sure why these power vomits were happening. But looking back this was the reason and it definitely seemed like a never ending battle. You tube feed them, they are sick and still loosing weight, what tha..... We had to play with qty and timing just to get it right = no vomits.
The continuous feeds overnight were a shocker, we had to set our alarm through the night to change the bottle in the machine and even then it was scarey because he has never vomitted in his sleep and this was making him choke and gag in his sleep. He slept in our room for months on end until I was confident he was ok again.
To date, we have had a barium swallow and xray and ultrasound on his tummy, blood tests galore and an endoscopy. Luckily no fundo, but they were talking of it.
Anyway I feel like I could talk all day on this issue, to this day he is still on 30mg of Losec and 40mg of Domperidone (Domperidone is a drug to help them stop vomitting). We give him 1ml of Losec in the morning and 2ml at night and that helps, but he still wakes through the night at times. We proabably have 3 good nites a week. The domperidone is 1ml x 4 times a day.
He is still a bad feeder with solids, but I guess he is always going to be small and I am sick of fighting him. He weighed 8.24kgs at 12 mths and he is nearly 13.5mths old and think he weighs 8.5kgs. It is strange though my paed always told me that Lachlan just mustnt like milk and that he would be great on solids. That time came and no still not good on solids (although we have had peaks - must have been growth spurts), but now more then ever loves his milk, go figure. What makes it worse / harder is that he has always been cows milk protein intolerant too and is on a prescription formula and we have not been able to have dairy. Which makes food very limited for this very fusy child.
I also do think that the Losec takes a while to work, but I would definitely get it in a suspension, that is the only way too go. Lachlan was on Losec at 3 weeks of age and I still didn't feel like I bonded with him until he was 3 mths. But I do believe there was a bout of colic happening there also which made the screaming horrendous. So that could be possible with your little one too. I do think most babies suffer with a little bit of wind up until 3 months of age. Lachlan had terrible trouble with bringing up his wind and when he did he would vomit. An ultrasound showed all the wind in his tummy.
We use to put Lachlan in a tri pillow in between us in bed, it kept him elevated and helped with his night sleeping. But day sleeping was shocking and still is!!!
I have a kid that hates to eat and sleep. Grr...... But I love him all the same.
I know how you are feeling, but I just wanted to assure you that it does get better. I am just lucky that Lachlan is such a happy kid considering, because the anger he showed as a bub (he use to kick and punch me), really scared me that, that was his nature. No doctor can say that is behavioural at that age, I was worried too, but no no no way....
GL and if I can offer anymore help, please let me know!
Shereejoy, I am so sorry to hear what you are going through with your little Lachlan, my son Parker is a very similar story to yours, and he is now almost 3 and sad to say will not grow out of it. BUT like you said it does get better, he is sleeping now, and he will tell me when it hurts and where, and in general he is pretty good on the medicine.
I do have a question though about your losec and that is that you give 1ml in the morning and 2ml at night? That to me works out at 6mg a day and he is needing 30mg, unless they are compounding the losec at 10mg/ml that may be why he is so bad.
If they are compounding it at 10mg/ml you should know that this would mean that there is not enough buffer to omeprazole ratio and the compound is likely not to last longer than a couple of days before becoming unstable and useless.
If you need any more info on this please ask or I can email you.
Jac, we had the same problems...our GP, ECN and paediatrician all said that DS didn't have reflux yet he was SCREAMING the place down after every feed, wouldn't sleep, was generally unhappy almost all of the time and was throwing up lots. Finally the paediatrician diagnosed reflux (around 12 weeks I think) and put him on Losec. Things changed after that...it's AWESOME stuff!!! We just dissolve the tablets and use an eye dropper to feed it to him...after a month or two he started taking it quite easily and now he opens his mouth ready for it.
Recently the paediatrician told us to take him off it (because "they tend to grow out of it by 6 months") but all those horrible symptoms came back...needless to say, he's back on the tablets again.
I was in tears every day until the Losec started working and no one seemed to understand how bad it was... I am STILL jealous of babies who sleep heaps (DS still isn't a great sleeper but he is better) and particularly of young babies that can be put down to play quietly by themselves then put themselves to sleep on the floor... It's just such a bizarre thought since we never had that.
Good luck, I hope that something works for you soon!!!! You're not alone in this 'fight' although sometimes it feels that way... And I know it doesn't help now, but it WILL get better eventually.
I had Steph on Zantac, then Losec (tablets dissolved in water, then give 5ml), neither of which worked. I have been slack and not tried Caro's magic juice from her chemist, or rather called them up first, since I am in Vic too. I have taken Steph to Sunshine hosp, and RCH a couple of times each, and they were both useless for her reflux and screaming.
We see a really nice paed here in Sunbury, who gives Steph acupuncture. I think it helps a little, but Steph finds him relaxing (the only dr she will smile at more than once), and I find him terrific to talk to. He has been the only dr that has seemed interested in what I have to say and how I am feeling.
Have any of you that have long term reflux babies considered alternative medicines? I was at a clinician on Friday, a friend of ours who specialises in acupuncture (chinese & japanese) and homeopathy. I asked her how effective homeopathy was in treating reflux because I hear of so many bubs here that have it and she told me it was really effective. My SIL also used an osteopath and had good results. She went there after several recommendations from friends. So there could very well be more hope then just the meds you have already been prescribed. HTH.
Thanks krssalyss I have tried both kineseology and homeopathy with Parker, both have not done much for the reflux, thought he homeopathy does keep away other things like colds and flus and that helps in the long term with the reflux.
The homeopath I see is really good and she has had a lot of success with refluxers especially infants, but Parker she has said she can't help for his reflux.
The kinesology was a muscle testing course which was mean't to eliminate allergies and thus help the reflux it did help with him being able to have other foods, but did nothing for the reflux.
I have a friend who did accupuncture which did not help at all, and one of my really good friends regulary goes to a chiropractor and she says this helps immensely. I think that it is a great idea to try alernative medicines, but at some point you realise the only thing that takes all the pain away on a long termer is medications unfortunately.
I took Jovie to acupuncture for her reflux. I found it did relieve some symptoms but not all. I took her for 3 months and then the symptoms resolved. I didn't have to use medications with her though, I did use some chinese herbs for a month prior to everything resolving.
BUT Jovie's reflux was actually caused by an intolerance/allergy to cows milk and soy. From me drinking or eating anything with those products. So when her symptoms resolved I had been off those products & breastfeeding for at least 3 months. Its hard to say as well which was the reason for things resolving, all I know is if I drink milk or soy milk she breaks out in a huge rash & has reflux symptoms for a fortnight afterwards.
If the compound was made to 30mg/ml that means that you would be giving him 90mg of the losec a day (because every ml would contain 30mg of ingredient). Generally losec is compounded at 2mg/ml which would mean that to get the 30mg a day he needs 15ml a day.
Losec can't be compounded at 30mg/ml as the buffer to losec ratio would be wrong and the medication would essentially be eaten up on the way down the the stomach, which would make it not work at all.
I am sorry if I am confusing you, it is hard to explain on here sometimes. I am just concerned that your little one may not be getting his full dose in and thats why he is still having so many problems.
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Sick of crying about reflux and why are Dr's so bad at treating it?
). We have only been taking Losec for 24 hours but have noticed an improvement in his sleeping. Still have a baby who screams when being fed and after feeds (even though still hungry, hits at the breast and cries). I hate the feeling that my baby is in pain and I can't feed him without making him cry and we both end up in tears everyday. Once settled after a feed (usually half an hour to an hour later) he is all smiles - bit like a muliple personality disorder! Can you believe that my paediatrician told me my DS's sleep issues and unsettled periods were behavioural (at 3mths)? Grr....Anyone have a good paediatrician in Melbourne?
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