When losec doesn't work

When losec doesn't work, is there another medication above this one? what is the next step? the paed i saw was useless, i'm on a wait list for an appointment with a gastroenterologist, i'm currently dairy free, been on losec for 18 days - no improvement.

Does no one know??

I am still waiting to hear from the gastroenterologist, the wait could be as long as 6 weeks.

Dairy free is still not making a difference.

He has been on Losec now for almost THREE weeks - shouldn't it be working yet???

The sleep deprivation i can handle (just) but seeing my baby boy in pain all the time is terrible and i can't believe the beginning of his life has been such a miserable experience for him.

Oh your poor little man :(. I can't give you any Losec advice, but I wanted to suggest trying a paediatric chiropractor. My DS2 had reflux and I took him to our chiro before putting him on meds and after one adjustment his reflux disappeared within 5 days. Sometimes when something is out it can cause other problems like reflux, colic, wind, etc. to occur.

I hope you find some relief for your bub soon :hug:.

On MummaB I am soooooooo sorry you and DS are having such a rough time... :hug:
I cant help with the next step after losec, but wanted to offer my support. My Paed didn't go any further into it than that with me.
Have you tired using the formula thickener, but giving it to your DS while breastfeeding? My Paed did suggest that that might be an option, but cautioned me that it can case some constipation, so advised me to make it up half strength and see how that worked. I had a look a the tin in the chemist and it does have directions on it for use with breastfeeding, but altering my diet has helped my DS enough so at this stage I have not tired this, but it sounds like you need to "pull out the big guns" now.
Also, with my DS I have cut out all "acidic" foods such as tomato, orange juice, and other reflux foods like chili, and curry and anything spicy, and I don't have any cafiene.... For me, this helps with my DS. I think other things you can eliminate from your diet are gluten, and wheat, as they can have an impact on reflux too.
Hang in there hun. I am sure, somehow, you will get through this. :hug:

Hey MummaB

The pain is horrible to see isn't it..I really sympathise with you.

The doctors may try another drug called Zoton. It falls into the same type of category of Losec, and again decreases the amount of acid the stomach makes. Our paed said that was an option for us, but we used Losec. But you know what, I still wouldn't lose out hope yet that the losec won't work.
If I was in your situation, I would definitely be trying some thickener with the bfs (like guarcol) as that would help keep the feeds in his belly, and therefor in time and in conjunction with meds, should reduce some of the pain he is feeling when the stomach acid creeps up. And of course positioning upright.
I guess if all that didn't help, there would be good reason for the specialist to organise some more tests to see exactly what is going on, and to confirm that it is reflux causing the pain.

Anyway, this is probably not much help but just thought I share it anyway.
Once again, hang in there.

Thanks for your support ladies... I just feel so down about this, my first DS reflux was pretty minor and i thought that was bad enough, i understand what its like now when someone has an ill child, its such a terrible feeling when there's nothing you can do.

I tried chiro with my first with no results, but i wonder if we didn't try it for long enough. SO i'm willing to try that again.

The lactation consultant i saw told me that the thickener starts to break down the ebm quite quickly, but as a last resort i'm willing to try that too. So in regards to that, does this mean i have to express every feed and give him bottles?? how do you avoid mastitis in that case?

I will google zoton, i can ask my gp about it tomorrow when we go back. Also he is supposed to have his immunisations tomorrow, and i feel so bad about giving them when he is already suffering, i am wondering if i should delay them? the only thing is i want to start going to play group because my 2 year old is going nuts at home every day, so he might be exposed to things now. (he never had the hep shot at birth).

Also i have been busy googling, and there is something natural called "slippery elm", but i can't find out if he can use this in conjuction WITH the losec.

As far as using the thickener, no that definitely doesn't mean you need to express every feed and make it up as thickened EBM. That is only one option.
The best option for bf bubs is to mix some thickener powder with cooled boiled water. This will make a gel, and then by using a syringe you can measure out a small amount of this gel before every feed (usually about 3-5mls or so). Then you need to give bub 1/3 of the amount before he starts to bf, then 1/3 half way during the feed, and the the last 1/3 at the end of the feed.

I have to run as I have an app, but will come back after and help it make more sense to you.

Thanks Lee :)

I'd rather do that as he's used to taking the syringe and i'm not keen on giving him a bottle, plus i doubt he'd take it.

I can hopefully get out of the house soon and go to the chemist.

Hun, there is another medication which is sometimes used when Losec doesn't work. I don't think it's the Zoton one mentioned, I think it's a different one (but I can't remember the name so I might be wrong). It might be worth asking your GP about it.

Another thing you could try is to also cut gluten out of your diet. This can also cause problems. Although I believe it takes at least 3 weeks to get all traces of dairy out of your system so hopefully you might still see some results from that.

I really hope you find something that works soon. How are you doing hun? :hug:

Although i dont know much about losec, i do know that some compounding pharmacies will make it into a suspension for you, so it goes in easier. I know Feeb had it done for Jacob and it made a big difference. She managed to get the whole dose in alot easier.

I hope you get some answers. If they say it is going to be that long for a specialist, i would be getting your local doctor to ring them for you and saying how desparate you are and how much it is impacting on your baby. Perhaps that may even be able to put you on a cancellation list! I also would be ringing them personally a couple times a weeks to see if there are any cancellations! They will get sick of you calling soon enough and get you an appointment- squeeky wheel theory!!!

Take care and hang in there

odette

Hey MummaB

My 5 month old has been on Losec for 2 months and although she's heaps better sometimes i wonder if it's actually doing any good? In the past week it has not made any difference, she's been acidic spewing day and night and in so much pain.
I went back to paed and she suggest up the dose, which i did without success, and try no dairy and still no joy. I have her on some solids which appear to help, rice cereal. however i recently tried a rafferty's brand but then realised it had wheat so that might have been causing the problem??? It's just such a guessing game with refluxers.
However, i'm afraid there is not much else we can do. Is it very heartbreaking watching your child in so much pain and not be able to do anything about it. I was wondering if my daughters problem might be something more serious but like you i have to wait to see paed and then the tests are very invasive. But it might just be worth it. As for anything stronger than Losec, from what i've been told that is the big gun. Adults take it for stomach ulcers etc and it's supposed to stop stomach from producing acid - but i can sure smell acid in my girl's spew. Sorry can't be much more help but you are not alone. I am going to head back to paed and demand we look at other reasons why she is this upset. As you say the lack of sleep we are feeling is nothing compared to them, waking up with sore belly and moaning in pain - enough to bring me to tears
I really feel for you - it's hard for others to understand unless they are in the same situation. Good luck

Mantaray, i've thought of gluten... i am already so hungry though since cutting out dairy, dairy is in so much that theres not much i can still eat, i can't imagine what i'd do without wheat etc, plus i hardly have any time to prepare anything, i am living on nut bars, fruit and bread. I am going *okay*, i have been up since 3am..... he just will not sleep unless he is in the sling, so my arms and back are killing me and i have not really slept apart from dozing for a couple of weeks now because how can i sleep holding a baby? this morning i woke DH at 6am to ask if he could take the baby for an hour before he got up for work because i literally couldn't hold him anymore or listen to the crying and he said he needed his sleep for work! :wall:

I am just holding out hope for slippery elm i have coming from the BB naturopath.

I asked my LC about the thickener and this is what she wrote: the theory to thickeners is that it makes the milk thicker and heavier and so it shouldn't come up into the oesophagus so easily. In reality they do not work efficiently for many babies and they do not fix the problem that has caused the reflux in the first place. The thickeners are added to milk (either EBM or formula) then the baby drinks from a bottle or cup. It's not possible to do it at the breast. As soon as a thickener is added to expressed breastmilk the enzymes in the breastmilk starts digesting/breaking down the carbohydrates (the starch which is the added thickener) so the thickening loses its effect quickly. There is no way to tell which babies will be helped by thickeners.

:hug: Oh hun, I am so sorry your DH didn't give you a break. Is there anyone who can help you out today so you can have a rest?

You are doing such a great job hun. Hopefully things will be better soon. I know a lot of babies start to grow out of reflux from around the 8 - 12 week mark, I hope your DS is one of these. :hug:

Not really, but i'm okay. Just need sleep, hopefully the homeopathics arrive tomorrow.

You poor things :hug:, it is so tiring. Have you tried a baby hammock? They are wonderful for bubs with reflux as it keeps them more upright. It may also solve you having to keep him in a sling when you need your own sleep.

My DS1 would only sleep during the day in my arms or in his baby carrier (it turns out he had a dislocated shoulder from birth, the chiro is the one who discovered it and fixed it), we bought an Amby baby hammock out of desperation and it worked brilliantly. It literally changed our lives.

I really hope the homeopathics work for you :hug:.

Keep hanging in there mummab..

As for what your LC said about the thickener, interesting pov with probably some very valid points. However thickener CAN be given at the breast (in a gel, before, during and after a feed), and is used this way at PMH. She should know that. I would definitely agree that the effectiveness of it may vary widely among different babies, but with some babies it really does help.
As for saying that thickener doesn't fix the problem, well technically a fair few medications that we take for medical conditions don't EXACTLY FIX the problems they are used for. These medications/treatments are used to MANAGE the symptoms (eg. Losec won't stop bub from refluxing either, it's only as he matures that this will resolve. But it is used to make the tummy contents less acidic so it won't cause as much discomfort).....Sorry for rambling, I just get frustrated when parents aren't given the full picture.

I really hope your DH manages to let you have a rest hunny. And I've got my fingers crossed your homeopathic stuff does the trick.

xx

:( MummaB, my heart goes out to you, i am crying as i type, I am wishing for a magic cure for you but there rarely is. I ditto all the advise. My bub no 2 is a refluxer, 3 weeks on losec and we are now starting to see little bits of improvement.( After all the above stuff has been tried as well.)
The only things i can suggest are
* the thickner worked well for us for a while.
*mylanta 2ml helps when in alot of pain but being a naturopath myself i HATE IT.
*Tried a bowen treatment which again helped for a bit
*Is bub still wrapped, it helps.
* hate to say it but many find tummy sleeping and a dummy helps ( we use a breathing monitor when we tummy sleep. (please everyone do not shoot me !)
*slippery elm helps to coat the stomach so the acid is not so painfull but to tastes really really bad.
* Adding things like peppermint and chamomile tea to your diet can help, they relax some bubs and there mums too.
* Ask someone to help before you get to the breaking point, dont be to proud- your need sleep.
BIG HUG TO YOU AND THAT BUB OF YOURS
REMEMBER THIS WILL PASS

I'll say something you probably don't want to hear but . . .

My DD#1 had huge problems and was diagnosed with reflux. We tried herbal remedies, mylanta, zantac, gaviscon and losec. We also tried massage and chiropractors, and I eliminated dairy and wheat from my diet. Eventually out of pure desperation I went to a naturopath come kineseologist ("witch doctor" I call him) who said that my daughter had gluten and dairy protein intolerances (these have since been confirmed medically) that were aggravating her reflux. Anyway, he said I either had to cut out basically my entire diet and start again - no red meats, no wheats, limited fruits and vegies, no dairy etc etc etc - or I put her on soy formula. I tried the formula and within 2 days my daughter was completely pain free and drug free.

I've just been through the same issues with DD#2, although fortunately not so severe. The paediatric allergies I saw with her fully supported the idea of soy formula feeding. She will still tolerate a breastfeed or two per day, provided they are not consecutive.

I know I'm going against the popular view here that breastfeeding is best, but in some cases it just simply isn't unless you are prepared to wholescale change your own diet. I weighed up the pros and cons and decided my child on formula was best for my family as a whole.

Trish we have actually tried the Amby hammock, my friend lent hers to me and i've been trying to put him in it since birth but as soon as he's put down he wakes up, he really only sleeps in the sling or hug-a-bub because that is where he is upright and he must feel better being held, because even with the bassinette propped up, he still only kips in there. But thanks for the idea, i do love the concept of the hammocks.

Lee yeah i figured you should be able to give it alternatively... its still something i'll consider if this is going on in a few days. My hubby is just stressed himself, his job is very demanding, i'm sure he'll take the boys on the weekend mornings so i can have a lie in.

Kellmay, thanks he is still wrapped and he takes a dummy, the sucking does help. The slippery elm arrived today actually but unfortunately the bottle was smashed and i don't know if its okay to still use the capsules... since you break them open but i'm unsure if that is safe.

Luluhb.... thanks for being honest.... soy formula is an idea that comes to me every day as i go through this, so far i keep getting persuaded not to try it and have ended up trying other things... but when i run out of things to try and as a last resort if he still like this i will go down that route. I am finding it so hard just having cut out dairy with no time to make meals for myself from scratch i'm not eating much at all, in fact probably not enough for breastfeeding 2 of them. So i know cutting out other food groups will comprimise my own health. I see you are in perth... i wonder if you can recommend a paediatrician or a specialist who helped you with your girls? I am at a loss of who to take him to now.

Are you in Perth? The "witch doctor" I went to was down in Australind. He was truly amazing and I would have no hesitation in driving almost five hours there and back to take either of my girls to him. I'm sure there are others in the metro area who are just as good - I just don't know who they are and this guy was the only one who literally saved my daughter. Otherwise, the paediatric allergist I've been seeing with DD#2 is Rama Naidoo - his rooms are at Joondalup Hospital but he also consults at Glengarry Private Hospital. If you want to PM me an email address I can send you a couple of information sheets he sent to me re lactose intolerances etc that you might find interesting. Also, Lindsay Adams at SJOG in Subiaco. He seemed to have a really good attitude towards it all and is open minded about other things to try - 2 of his 3 children have allergies so he's also got real knowledge of what its like to live with - unlike the idiot paed who told me with DD#1 that we should just accept it because she would eventually grow out of it!

I got huge opposition to trying formula with DD#1, let alone soy so I put it off for a long time too. It was pure desperation that drove me to try it and my only regret in relation to DD#1 is that I waited so long. With DD#2 we found that even one bottle of soy formula a day with the rest breastfeeds helped (although she is much better on more than 70% of her feeds being soy). DD#1 was unfortunately only ok if she had 100% soy. I found it really hard initially with DD#1 to make the decision to switch to soy. I had had so much negativity, knew the benefits of breastfeeding and wanted to breastfeed for as long as possible. In the end I figured that formula was the lesser of two evils given the pain she was in, and the medication she was taking that didn't seem to really work anyway.

Good luck with whatever decision you make. I hope you find a solution that helps your son quickly

Hey lulaHB
congrats on making the choice that was best for you and your family, now thats a great mum !

Yep i'm in perth Lulu, i will pm you my email as the info would be appreciated.

Well I am actually happy to report that we have in the past couple of days seen some improvement!!!! For most of his feeds he is spending much longer on the breast (at least 5 minutes rather than a minute or so), and not as much pulling off (only when the let down comes but i am still letting it spray off before putting him back on, this really does help). He is also settling after a feed without the hours of rocking and i notice he is beginning to sleep deeply which allows me to actually try putting him in the bassinette - whereas before he was only catnapping and the sleep was very restless (ie, he would fidget a lot, wake up very frequently). The past 2 nights i've gotten blocks of 4 hours sleep which is amazing! He also seems much happier, we have periods after a feed where he will actually allow me to put him on his back and he will lay there for a while looking around or at us and even smiling.

I really suspect that dairy was the culprit as the improvement coincides with the diet change, unless amazingly the losec has just kicked in? i am dubious about that. Touch wood that the improvement continues and i will keep up the dairy free as hard as it is.

Oh Tan, I am soooooooooooooooooooooo pleased to hear that there has been some improvement, I have all my fingers and toes crossed that this is the up and up for you guys. I am so glad you are finally getting some sleep, and that Archie is a happier baby.

That is such great news!!! Hope it keeps up. :hug:

Brilliant news. Hopefully things will keep improving for you both.

MummaB Just wondering how things are going for you? I've just re-read the thread and hopefully things are still improving? :pray: