effective time of losec

[sloaneranger]

My 11 wk DD has just been diagnosed with reflux after 2 weeks of total breast refusal and ongoing unsettledness, vomits etc etc. Losec was prescribed at 10mg per day (5 mg x twice daily).

Commenced meds 4 days ago, but are yet to see an effect. Pead said could take 48 hours or could take up to a week for any action. Is there a usual time frame? Pead said if no improvement within a week, up the dose to 20 mg per day.

Refusing the breast is very distressing for all and refuses to take the bottle (no surprise there of course).

I'm haning my hat on this drug for an improvmenet, but is it normal for it to take so long to become effective?

Thanks in advance for any help/advice/comments.

:confused: :(

[RISA]

Hi
It sounds like things have been pretty tough for you all, and yes, unfortunately, reflux can be a very difficult and confusing condition to figure out and to treat. All refluxers seem to be different, and respond to different treatments, and the best option is to use trial and error, which I know isn’t at all helpful for you to hear. It is really important for you to continue to trust your instincts as you are doing. Please continue to pursue this as it sounds like you both need things to change!!

It isn’t at all unusual for Losec to take a week or even longer to work, especially if there is any inflammation in her oesophagus that has to heal. Some babies will show improvement well before this, but for others, it can be a slow process.

I am sure it is very distressing for you- not only are feeds a major problem, I am sure you are exhausted, stressed and feeling more than a bit overwhelmed with it all. I can remember being there, and it is not a great place to be. I felt like such a failure as a mother, like I wasn’t meant to be one, and it was awful!!

I’m sure if you are concerned, and would like to increase the dose before the end of the week, you could contact your Paed and check that it would be okay? Perhaps that would help to improve things more quickly? Is the doctor aware she still isn’t drinking much, as that is something that you cant let go for too long. Please take her to the doctor if you are concerned she isn’t getting enough fluids, or you have any other concerns (and dehydration can happen so quickly in a young bub, especially in summer). Sometimes heading up to the doctor or hospital can get you the attention you need too!!

While you are waiting for the Losec to work, there may be some other things we can suggest or try. Can I ask how you are giving the Losec? as that can sometimes be an issue, especially with a young baby. It is important that the Losec granules are not crushed or it becomes less effective- though we do still hear that being told to some parents. The manufacturer recommends it is dissolved (as much as it can be) in room temperature water (a small amount is enough). It should not be given with milk, so it’s best to administer it half an hour before a feed if possible. Some parents have success putting it on a spoon and feeding it to their bub off that. Others put it in a syringe with a wide neck (a 10ml syringe, nurofen syringe or medicine dropper are often helpful) and squirt it in slowly down the side of their mouth. If any of the little granules come back out, they place them back in. It certainly isn’t easy giving it to a young baby, though it can be made into a suspension at a compounding pharmacy (for a price). Older babies can take it with pureed apple or pear, but I would think she is a bit young for those yet.

Sometimes the doctor or pharmacist will also recommend using Mylanta or Infant Gaviscon to provide more immediate relief, and in this way, at least she may feed too. Have they suggested either of those to you, and if not, perhaps it would be worth asking?

They are all different, and I am sure you have tried lots of techniques to get her to feed. I will suggest a few strategies that you may find helpful anyway, in case there are some ideas you hadn’t thought of; you never know, something may help.

- If there are particular feeds she has that are better, concentrate on them. Often the night feeds are best, or when they are more sleepy (some feed while they are asleep, surprisingly)
- use distractions whilst feeding- threaded beads, tv, rattles. If that is upsetting to jer, try the opposite
- try feeding in a darkened, very quiet room with no distractions
- have soft background noise going, like music or even the washing machine
- cuddle bub and relax them before trying to feed
- try using a dummy- take it out of their mouth and quickly replace it with your breast
- don’t force the feed. Sometimes if she is refusing, wold it be worth waiting 15 to 30 minutes and then trying again? Some babies may be reluctant to feed initially, but may take the feed well a fw minutes later
- concentrate on any feeds she is less distressed
- try feeding in a cool bath or pool
- feed her in an upright position, and especially don’t allow her to slump as this puts pressure on their tummy and causes more reflux
- if she will feed better at night, give extra feeds then and more readily. Try to keep her relaxed and drowsy, and feed her before she gets too worked up. Do a nappy change after a feed, don’t turn on lights and don’t disturb her unnecessarily

I can understand how desperately you want/need this drug to help, but try to take it one day at a time. There are other doses, other medications, other combinations of drugs etc that you can try, so there are still options. Also, has anyone ever suggested food sensitivities as a possible reason for her reluctance to feed? A lot of reflux bubs seem to have problems with cows milk protein, and that may be another avenue you can explore.

If you keep trying things, and nothing seems to be working, and she continues not to feed, then please don’t hesitate to take her to the doctor or hospital. Please let us know if you have any other concerns and I hope some of those ideas help. If you would like to talk to one of our mums, just contact us at our email address and let us know.

Glenda

[sloaneranger]

Dear Glenda
Thanks sooo much for your detailed reply, most appreicated.

I will continue with the prescribed Losec for another 24 hours and then up the dose as per Pead's advice. No improvement to date which is extremley disheartening indeed. DD continues to refuse breast during the day. THe only way I can get feeds into her is to:

- feed her at night when asleep and do roll overs

- wrap her REALLY tighly and feed her when she has been awake for some time in an attempt to feed her to sleep. I know this is a real no no, but is the only way I can get something into her during the day. She is a little less reluctant to feed when I do this.

Administration of the drug is via syringe in 3mls of cooled boiled water with 2 mls of air. DDtakes it OK, but often just spills it back out again.

SHe is also now doing some purple spills - I guess this is the drug reacting with the stomach acid - is it working then!!

Pead said not to give Mylanta etc as it counteracts the acid - or did I mishear him - I was sooo exhausted when I saw him I can't remember what he said. I have heard that a product called GAstro-gel is good with Losec???

Anyway, will plug on today and fingers crossed will see a new little girl who is keen to feed again. Apart from reluctance to feed and constant spills, she is very happy, chatty and contented most of the time which is surprising indeed.

I'm very tired and fed up with chasing rainbows for answers - these babies are all just one big question mark to everyone!!!!

Once again thanks so much, your support is invaluable.

Sloaneranger:crying: :( :banghead:

[RISA]

Hi Sloaneranger,
I am glad that I have been able to help- as a reflux parent myself, I know how difficult it can be, and am happy to try to help any other family in that situation. I don't think ANY family should have to try to deal with reflux on their own; it's simply too hard!!!

Because she is mostly a very happy, chatty and contented baby, hardly anybody else would understand, I’m sure, and your ‘story’ would not make sense to them (and of course if they can’t see it, it isn’t real!!). What I would see, being a reflux mum who does understand, is that you are doing a great job, and it’s because of you and all your efforts that she looks so happy and healthy!! Take it as a pat on the back, even if others can’t necessarily see the work you put into it all.

You sound as though you feel a little guilty for some of the ways you have had to try and feed her, but I truly believe the bottom line with reflux kids is “You do what your instincts tell you, and what you are comfortable with, and DO WHAT WORKS”. If wrapping her tightly and feeding her to sleep is what works, then how can that be the ‘wrong’ thing. Finding a way that she will feed sounds like a positive to me, and it is really common for reflux babies to feed only when they are asleep, drowsy or drifting off to sleep. If you find something that works, then run with it, but if you are uncomfortable about it, then please speak with your doctor to find out if there are any problems you may not have thought of.

A lot of people will tell you not to feed bub to sleep because it will become a habit and (I love this one)-“you will create a rod for your own back”. After dealing with my own reflux children, I believe that sometimes it’s a matter of doing what you are comfortable with, and doing what works. She needs to feed- it isn’t optional, and if it does cause problems, then when her reflux is adequately controlled, you can perhaps deal with any issues. Your priority at the moment is to make sure she feeds so she can grow and develop!!!

I think it would be best to check with the paed about Mylanta. There may be a couple of things, but your interpretation doesn’t sound quite right (and as you say, you were soooo exhausted and probably stressed/distressed when you saw him). Mylanta does counteract the acid (it is an antacid)- which is why it gives short term relief from the pain of reflux. It can neutralize the acid, and stop the burning, at least temporarily. Perhaps what he meant to portray was to be careful giving it with other medications. Mylanta can interfere with the absorption of other medications and the general advice is to not give Mylanta within 1 or 2 hours of giving any other medication.

I have heard of Gastrogel, but don’t know anything too much about it, sorry. I am happy to ask our other parents if you would like more information? Alternatively, you could call the Medicines Line on 1300 888 763 Monday to Friday 9am to 6pm EST- for independent pharmaceutical advice. It’s funded by the federal govt, as some part of the National Prescribing Service, and we have had some great feedback with it.

It’s hard to find the answers- it is all trial and error, and it can often feel like you are the only one going through this. (Have you thought of joining a support group, as that can make the difference with coping, and not being able to!!) Try to take it one day at a time, and remind yourself you are not doing anything wrong; you are a mum trying to do the absolute best for her child. You really are doing a great job and you need to remind yourself of that occasionally (it can help you feel more in control).

Glenda

[sloaneranger]

Oh Glenda, I'm in tears typing this , totally overwhelmed by your caring and concerned nature, not to mention tips. THANKYOU from the bottom of my heart. It is one thing to visit a Pead, get a "diagnosis along with assocation meds" and wave bye bye and call if any issues. Of course, when you call back, Receptionists are like Nazi's, Pead is always extremley busy (naturally) and your made to feel as though you are wasting everyones time. Your direct support is INVALUABLE!!!

No luck today with feeding again, and Losec has not kicked in yet. Tomorrow will be day 7 so we will up the dose for what it is worth. Pretty much at rock bottom now with more "dryish" nappies, more wakefulness etc etc. (Not to mention I have to have "emergency" endontic treatment tomorrow for a dodgy tooth - just wonderful). can't breastfeed for 3 hours after local/drugs - but that won't be an issue because DD won't feed anyway....still no luck on bottle either. Plus, it is my DS first day at school tomorrow, a big day for him, but very much overshadowed by what is happening at home with his sister and mummy - very sad indeed.

I'm in despair, clutching at straws, exhausted and very overwhelmed by all this. Is there a number that I can ring for RISA counselling to speak to someone about Reflux and breastfeeding?

Once again - you certainly have the magic within you Glenda.:kiss: :kiss: :kiss:

SLoane ranger

[RISA]

Hi,
Sniff, thank you for that; it is so nice to know that reaching out to other families can make so much of a difference, and really, that is what RISA is all about; offering support and understanding to families who are most likely desperate for exactly that. (and you know, it makes what we went through a more positive thing as we can turn around and use that experience to help another family. Our experience isn’t wasted, if that makes sense)- and thank you for sharing that too.

We are happy to try to organise someone to call you, so if you would like to send an email to info @ reflux.org.au (no spaces) along with your phone number, we can try to organise that.

Have you spoken with your doctor today at all? With her feeds continuing to be so awful, and with her having ‘dryish’ nappies (and it being so very hot and humid)… and you hitting rock bottom, it might be best to make sure she is okay, and take her to the doctors or hospital?? What do your instincts/gut feelings tell you? Are you concerned about her hydration levels?

Babies can dehydrate very quickly, and she is so young still. I don’t want to worry you, and of course she may be just fine, but it may be best to make sure too. It can also be another way of making sure the doctors listen to you; they may sit up and take notice if you have been sufficiently concerned to take her to the hospital, and she might even get the attention she needs- sooner, rather than later. As I said, I don’t want to worry you; but if you are feeling you are at that point, then it may be best to have her seen.

Given the very bad timing of your tooth and your son's first day at school tomorrow (oh darn) on top of all that, perhaps it will work out far easier if she has been seen at the hospital? That has got to be adding to your stress levels considerably, andwith a bad tooth, I imagine you aren't feeling the best either!!!!

I hope you make contact with us by sending us an email; it sounds like it would be really good if you could have a chat with one of the reflux mums regarding breastfeeding, reflux, and the whole bit,

((hugs))
Glenda

[sloaneranger]

Thanks Glenda for that info and your concerns. I'm not too concerned about DD's hydration status as she is feeding overnight (3 "kind of" successful feeds and does get a little when I wrap her really tightly and get her to attach until she bombs out. I weighed her today and she has put on about 100grms, which is not flash, but at least it is something. She even did a poo today!!!! I'm seeing a Child Nurse on Thursday and hopefully going to a breastfeeding clinic to get ot hte botom of the refusal, given that the Losec has not made a scrap of difference thus far. Will up her dose as of tomorrow - watch this space. Root canal surgery was disgusting, very painful and now have a major headache, but my son's first day at school was great.

I will certainly make contact with RISA for some phone counselling over the next day or so.

Once again, thankyou for your support - it is so much appreciated and gratefully received.

SloaneRanger xx:yelclap: :kiss: :hugs:

[RISA]

Hiya,
That's good you feel she is well enough hydrated. It's hard to know exactly when we try to interpret the message online- without being able to talk to the mum or actually see whats going on, so I am really quite relieved actually lol.

I'm glad you got through the root canal work okay and that your son had a great day at school. I am sure he is fine about school and the attention he received, as hard as it was for you; kids are very adaptable and accepting (much more so than us adults).

I'm glad your dd is still putting on a little bit of weight, and also that you are going to be seeing a breastfeeding clinic. From everything you've explained, I imagine that reflux is high on the list of probably reasons why she still isn't feeding well. She certainly has a lot of behaviours that would suggest that, and her dose of Losec is not particularly high (there is a huge range of what doctors use, with some bubs, even that age, being put on much higher doses). Often, until the reflux is well controlled, their feeding issues (and sleep issues) are difficult to resolve.

If you could contact us via email, that would be great, as our phone system at the moment is a Messagebank (leave your name and number andwe will get back to you type thing).

I hope your headache eases off and you manage to get a bit of sleep tonight (though that's hard when thats the time she is likely to feed better; you also want to encourage those feeds at the moment!!!)

Take care
Glenda

[sloaneranger]

Hi Glenda

It's me again, a couple of weeks down the track now. My DD is still refusing to take breast willingly, but not as much of a fight as usual. The Losec has made NO DIFFERENCE to her at all, and I really think that the "diagnosis" of reflux was not correct. She remains really happy, settled etc etc apart from when I try and feed her during the day (night feeds are good), so I guess this is something that I'll have to live with. Her weight gains have been OK. We're back to the Pead this week for a 4 week review so it will be interesting to hear what he has to say.

Your support (as well as that from Susie) has been wonerful and I can't thankyou enough for all the effort you have both gone to to ensure that we "struggling mums" don't loose the plot!!! Will update you later this week.

Cheers

Sloaneranger.xxxx

[RISA]

Hi,
You are more than welcome!!! (from both Suzie and me)

I hope the paed appt is helpful. It will be interesting to hear what he has to say, but just because you haven't noticed any improvement with Losec doesn't exclude reflux either. It can be such a difficult condition, and can present in so many different ways.

Also, some reflux bubs go on to have complications from reflux, with one of them being oral aversion. It is sometimes a learned response because they have felt uncomfortable (either pain or nausea, or whatever), so they learn to associate that feeling with a feed. Whether the reflux is controlled or not, they still remember, and it's then a matter of trying to overcome the oral aversion that has developed. (I can understand that myself, because I have reflux, and when it flares, I can't make myself eat because it makes me feel worse. If that has happened to her, whether any reflux is under control or not, if she expects that feeling, there is no chance of getting food into her. It truly can be horrible).

Perhaps a speech therapy appointment/assessment might be worthwhile. They may be able to make that diagnosis, and come up with some therapies to help if that is the case.

Also, have you tried an antacid before she feeds? If she still has some discomfort with feeds, it may possibly help, but if it is an oral aversion, it may not either.

Of course it might be something completely different, but perhaps your instincts are pointing you in the right direction- it's not actually the reflux that is still causing this issue, but her association with it to feeding.

It is quite a common problem with refluxers, though as you say, it might be something else entirely. I wish you all the best in trying to figure it out, and hope that perhaps one day you will get to enjoy feeding her!!!!

Glenda

[sloaneranger]

Hi Glenda

Me again, thought I would update you on my now 16 week DD. Saw Pead last week and basically said stop the Losec as is has made no difference and pretty much agreed with us that she does not have reflux. That being said, she is still refusing the breast during day feeds, but it is not sooooo much of a fight. Just taking it one day at a time. We don't think it is reflux because of the following:-

1. Losec made no difference at all (on or off the drug)
2. She is really happy, settled and meeting all other milestones.
3. Only refuses day feeds, pm feeds are OK
4. Lies on her back after a feed no worries at all with no screaming etc
5. Spills a little, but all bubs spill, without screaming, crying or distress

Have considered visiting a speechey and a chiro, but are we just chasing more rainbows? Also, do you think the antacid would make any difference - which one do we try??? I still have to feed her prior to going down for a nap as she is not interested any other times.

Her weight gains have been on the lower side, but Pead is not too concerned about this. Has suggested we commence solids in about a month as well, but we will wait and see how she progresses over the next few weeks. Am taking a drug to assist my supply as well as she still won't have a bar of the bottle.

It has been an extremley frustrating time, quite overwhelming really and has cast quite a dark cloud over our lives and do hope that things improve soon. Still plugging on day by day in the hope for improvement.

On the upside, it has been great to e-chat with you and again, thankyou for your efforts. Most appreciated indeed.

Cheers

Sloaneranger

[RISA]

Hi,
Sounds like the appt went well, so that's good. I know how tough this can all be, but hopefully your dark cloud is brightened a little bit just by knowing what a great job you are doing. It IS difficult to cope with feeding issues, and you have continued to look for answers and to do the right thing by your child! You should be proud of that, so perhaps that helps a little??

regarding any of the other suggestions- they do really depend on what your instincts tell you. From what you have said, I think a speech therapy assessment wouldn't hurt at all. Why don't you pose a question to the Pero Clinic speech therapists- they have a Q & A forum on BubHub as well, so they may be able to give you an idea on what they can do, and whether it is something you should pursue. I can get the link if you can't find them.

Solids also sound like they would be a good idea. Some of the things parents try early too, if their child is refusing bottle or breast feeds, is to add extra milk to any cereal; make up custards or blancmange with the bub's milk, make iceblocks out of it. Try and find creative ways of getting extra into her. Will she perhaps take some milk off a spoon, or from a sippy cup? She may be able to get some in that way (just floating a few ideas around).

Anyway, you do sound like you are doing a really great job. Perhaps not a lot of people can appreciate how stressful this is for you (especially because she probably looks so very happy and healthy), but YOU know, and it may help to remind yourself of all the things you have done right to get to this point. Try to focus on those, rather than on the feeds she isnt taking.

HTH and wishing you all the best as you try to figure out any answers!

Glenda

[sloaneranger]

Dear Gorgeous Glenda

Me again. DD (now approaching 4 months) is still refusing feeds and it has gone beyond a joke now.

We stopped the Losec after 4 weeks on it (1 week on 10mg and 2 weeks on 20 mg then about 1 week on 10mg) as it made no difference (Pead agreed). At this point, thought not reflux.

However........this week has been particulary bad with her breast refusal. She has also being brining up bits & Pieces well after a feed/sleep - even when she is just sitting in her little chair (viz upright). This does not seem to bother her, but as soon as she is placed in the dreaded "feeding position" she goes crazy (crys, kicks, goes red, heart races etc etc). As her weight gains have not been good, I've been forcing her to feed as you know. When she is up, she is happy, interactive, smiles constantly, talks and doing all the normal stuff. She settles herself to sleep with little intervention (but does not sleep very long). Only turns pear shaped when comes to feeding.

Al the above and having re-read your website again, I tend to think reflux is the culprit (as there seems to be no other reason after constant searching/investigations/consultations with everyone).

I started her on some Mylanta (1 ml 15 minutes prior to feed). Is this OK, or too little. How many times a day is this required. Have not noticed any differece thus far (she has had it 3 times).

My questions to your Guru Glenda are:-

1. Given that Losec is "supposed" to work fairly quickly, should I push for another med (have read about prevacid (excuse spelling)

2. Have also heard that Losec can take some time to tweak the dose - did we give it enough time?? Should we re-commence her on this

3. Mylanta - how much how often??

I've reached point when I'm defeated, getting really tired & Frustrated and little DD is not putting on much weight (80grms per week). This is very distressing, has gone on for too long with no improvement and is destroying our family structure. I'm so tired, so beweildered by feeding, have no energy for my 5 year old son who deserves so much more and have no interest in my husband in terms of anything extra. DD is now not sleeping well overnight (used to) as well.

SOme suggestions I've had of late:-

1. Start her on solids (4 months)
2. Wean - but she won't take a bottle and if it is reflux, will this make any differnece???

as you know, I have been waxing & waining about Yes it is reflux/No it is not reflux But today's feed I really beleive that she is in pain and the whole association with feeding and pain is soooo entrenched that it is now beyond help.

This is a little rambling, but I'm defeated/destroyed and desparate. I know you can't given acute medical advice, but some general info on my queries would be wonderful. We have another Pead appt in 3 weeks.

with so much appreciation.



Sloaneranger

[RISA]

Hi again :)

I do agree that reflux is still entirely possible- whether it is reflux directly, or whether it is a learned association because of reflux (oral aversion). I think that it is still important to pursue the idea of reflux, but it may also be equally important to get an opinion of a speech therapist regarding her oral aversion. Did you contact the speech therapists at BubHub and find out what they thought? IF you haven’t, it might be an idea to get some guidance from them. I can give you the website addy if you need it.

Given that she is so happy at any other time, I wonder if it is actually the feed itself- which makes me wonder if she has any food allergies or intolerances. Often feeds can be a lot more distressing, but it just may be one other factor. Cows milk is a common problem food for refluxers (approx 40%), so perhaps that is another angle that may make sense

Okay, your questions.
Mylanta- every doctor seems to have a different opinion on what dose of Mylanta you need to use. It seems to be more a matter of a maximum amount you use in a 24 hour period, rather than each individual dose, so it’s best to check with your doctor or pharmacist what they consider safe. Find out how much per dose, how often it can be repeated, and what the maximum is per day. Sometimes doctors will say to repeat a dose 10 minutes after the first if you haven’t noticed any improvement, which can be really effective with some kids too.

Losec can often take several weeks to get into their system, and another month after that if there is any inflammation present- it has to heal anything there, so it can take a while after that to see a big improvement if that’s the case. Sometimes even higher doses are used too- for some reason, bubs/children seem to metabolise the medication a lot quicker, so although it sounds like a high dose, it may be necessary to notice any difference. Also, could it be that the losec did control things, but she has a really good memory for how feeds make her feel, hence no change in her feeds?? (thats where speech therapy may come in very handy)

It may be worth trying another drug. The one you are referring to is called Zoton in Australia (it’s prevacid in the US)- and yes, sometimes it can work better for some children than Losec- no idea why though. Sometimes adding in Zantac as well can make a difference too- every doctor seems to have their own idea of what works, and what doesn’t, and to be honest, every child does too!!!

Perhaps control of reflux in conjunction with speech therapy will be the optimal treatment. It is so hard to know whether she is refusing because she is so smart (and worked out the connection between feeling awful and feeding), or whether she just remembers feeling like that. Either way, it results in refusal, which to her makes sense. She doesn’t know she has to feed either.

Does she ever seem to have problems with swallowing? Earlier on when she was taking feeds, or the times she does feed, does she seem to feed well? Any problems with swallowing, co-ordinating the suck, breathe and swallow routine? Could that be a factor too? Does she ever choke or cough when she is feeding? have you ever noticed any problems that way?

I do understand how you feel, and it is really important to remember that you aren’t doing anything wrong. She doesn’t ‘hate’ you, and it sounds like you are doing an awesome job. Having a child refuse to feed can shake our beliefs in ourselves. As caregiver- we are meant to provide for them, and feed them, and when a bub won’t, we can feel so inadequate, even though we aren’t actually doing anything wrong. As caregivers, we feel as though we should have all the answers, even though it isn’t that simple!! The emotional side of that can be enormous and very difficult to deal with.

Please don’t be too hard on yourself. Try to focus on all the good things you are doing, and not so much on the negatives. And if there is anything else we can do to help please let us know. One other thing, please don’t feel that you have to wait the three weeks to see the paed. Can you ring him to find out if there is anything else you can try? He may be able to suggest something over the phone, or you may even be able to get an earlier appointment. Perhaps video one of her feeds so he gets an idea of what you are talking about, as seeing often helps with the believing the severity of the issue. Perhaps ask about organising a speech therapy referral, though that isn’t strictly necessary.

Glenda

[sloaneranger]

Thanks so much Glenda for your expedient reply, most impressed and very helpful.

I will make an appointment with a Pead Speechy today to rule out oral aversion.

As far as her feeding style goes when she feeds (??), she sucks & swallows failry normally, but I do notice some clicking from time to time, I think perhaps this is down to poor attachment. A lac consultant has viewed a feed with no impression of poor positioning etch. At present, attachment is low prioroty as long as I can hear the milk going in I don't mess with her positioning as it would cause her to come off and then be reluctant to go back again. She does sometimes gag and cough when flow is fast (viz first feed in am), but that does not seem to bother her too much.

Intersting what you say about Losec, perhaps I will put her back on it and give it another try - will speak with my husband about this.

What is the difference between Zantac & Mylanta - how do they differ. I looked at infant Gaviscon which looked OK on package but had to be given post feeds and with about 15mls of water. This is not possible given my current (play/feed to sleep program) and getting 15mls in by syringe would be quite time consuming. She accepts the 1ml mylanta readily though.

I really feel embarrassed about ringing the PEad, he is so busy and the receptionists are Nazi like and I feel as though I have a scratch on my knee problem wise compared to some other parents with seriously ill children.

Thanks for your advice and I'll keep you updated. I think we might try some rice cereal this weekend just to get some calories into her. I gave her 20mls EBM in a sippy cup just now, took about half of it, spilled the rest. I just poured a little in at a time. I guess this just takes practice. I'm also on Domperidone to increase my supply.

You are a wonderful woman Glenda, thankyou so much for your help, totally invaluable.:kiss: :kiss:

[RISA]

LOL You are VERY good for my ego, you know :)

Please don’t feel as though you SHOULDN’T ring your paed. I do know what you mean, and I went through that too, but that is his job. There will ALWAYS be children who are sicker, no matter what the issues are. BUT.. you have legitimate concerns, and that is what he is there for. A baby who refuses to feed is worrying, and you have every right to need advice on that issue, and every right to want to do what’s best for your child. There is nothing wrong with that, and I’m sure he would prefer to know.
(and if that still doesn’t help, you pay him for a service, just like you would a mechanic, and your money is just as good as anyone else’s!!)
It may also help if I shared my experience too- I used to worry that the dr would feel like I was neurotic, by contacting him so often. I finally decided that I didn’t really care- if I was concerned about my child, I was going to get his opinion. After all, I am the mum and he is the doctor. It’s my job to let him know if I have any concerns, and his job to let me know whether they are legitimate or not. Too often, especially with reflux bubs, we seem to think we need to figure it out before we contact them, rather than doing it the other way round. Hopefully that helps you feel a bit more comfortable about contacting him too, as it really helped me to put it into perspective like that.

There is a big difference between Zantac and Mylanta. Mylanta is an antacid that offers relief quickly, but lasts only a short time. Zantac suppresses acid production and is like Losec in that it needs to be given regularly to maintain that acid suppression. It is generally less effective than Losec, though for some children it works really well. Sometimes its used with Losec- a combination of both for some reason seems to be quite effective too.

It sounds like Infant Gaviscon is out for you- and that’s fine. Whatever it is you do, it needs to be something that you feel comfortable with, and what works for you. Sounds like it doesn’t!

Sounds like offering her the EBM from a sippy cup was fun, though time consuming and messy LOL- but perhaps in time that will give her some avenue to get more milk in. When she is on solids too, you may be able to offer her custards, ice blocks, and blancmanges based on EBM, and even add more milk than usual to vegetables etc. I just had another thought- going back to the Infant Gaviscon, if you thickened the EBM with it, rather than water, and offered her that off either a spoon or out of a sippy cup, I wonder how that would go? Just be careful to stay within the right dose as per the packet, or contact your pharmacist- but perhaps that is an option worth considering too.

Interesting that you are on Domperidone for your supply, as that is sometimes used to help with reflux too. It can help move the milk through her gut to give it less chance to be refluxed up, and my kids were prescribed that at one stage for their reflux.

I know how demoralising it can be, especially as it can be really hard finding answers- finding something that works. It is all trial and error, and please remember that you aren’t doing anything wrong. If things are still difficult, which they are, it just means that you haven’t found the answers you need yet, and not that you are doing anything wrong!!!

I hope the rice cereal works well, and you find other ways to manage it- hopefully you can get her to return to feeds, but I’m sure you will also be able to find other ways around it if not. I’m really pleased you are getting a speech therapy assessment too as I think they would have a lot to contribute.

Glenda
Please stay in touch- I would like to know what you find that eventually works, and you are very good for my ego too LOL

[sloaneranger]

Dear Glenda

Do hope that you had an enjoyable weekend.

Things here are the same, no change and still DD extremely distressed by feeding. Started solids, not too bad for initial attempts. Did a huge gag vomit this morning, I think I made the cereal too thick, so up came the Losec & Mylanta which I had just given her. Trap for young players, perhaps solids first, or wait until drugs have had a chance to go down first prior to solids.

You must of sent some vibes to our Pead as he rang us unsolicited last night (9:00pm on a public holiday here in SA - said he was catching up on referral paperwork etc). Asked how we were going, and as no change has suggested we subject DD to a "pH probe" test, which will determine if our dilemma is reflux.

My question, have you heard of/encountered such a test.? Probe is inserted for a 24 hour period to measure the pH (acidity) and gauage the functioning of the valve etc (from what I can gather anyway). Is this correct? How invasive and tedious is it. Pead said has a good strike rate a diagnosis - any comments. Had a look on RISA website, but made no reference to test. Pead said if tests indicate reflux, perhaps need Nexim???

You are such a star, I would really be lost without your support - such a brilliant service.:thumbsup: :kiss: :hugs:

[RISA]

Hi hun,
Am happy to help. Whether it is reflux or not, you are still going through the kind of confusion and stress that not knowing does to you, and if we can help, that's just fine with all of us at risa!!

okay- perhaps we have hit on one of the issues- as you discovered, give the Losec well away from food. It needs to be given about 1/2 an hour before a feed to be more effective. Have we run through how you are givng Losec? Sorry, can't quite remember if we have or not (though usually I do), but that is really important and may perhaps be part of the problem??

It is really important that the granules in the Losec are not crushed or chewed in any way. They must be intact when they reach the gut or they lose effectiveness.

Wow for the paed to call you. That is really fantastic, and Im sure (once you got over your shock), that you were really impressed by his diligence. Good on him for that!!!

okay- information on a pH probe. mmmmm. Gosh, that's actually a hard one- I will tell it to you straight, I think. Yes it can be good for diagnosing reflux, but not always. I have seen some kids with obviously severe reflux, whose results come back showing no reflux above what is normal. So long as he understands it isn't 100% accurate, it may be okay. The drawback with it is that it only tests for ACID reflux, and won't register non-acid reflux.

and yes, it is also quite invasive and uncomfortable. The worst part of it is getting the tube inserted, as it makes them gag and carry on. They do generally settle quite well once the tube is in position. The tube is then xrayed to make sure it is in the right position to record reflux, and then taped in position across her face. It will need to stay in for 24 hours, so depending on the hospital protocol, she will either need to stay in for that period, or go home, with you returning with her the following day to have it removed. Also, because she is so young, she will probably need to have her arms strapped so she cannot pull the tube out (which of course means reinsertion).

While it can be very helpful, to a parents way of thinking, it isn't a nice test at all. It may give you the answer you need, which will of course make it much easier as you will then know positively what you are dealing with, but my concern is then, what if it doesn't show up even if she does have reflux. What then? Perhaps that is something you need to address with him first? What happens if it doesn't show up. It cant be presumed it ISN'T reflux! It just means you don't have definitive proof.

I don't think that any test is ever going to accurately 100% determine if reflux is an issue. It can be very tough to diagnose and it may be a matter of excluding other causes and perhaps going ahead and treating it as well.

It may be that her dose of Losec wasn't high enough, which is why you saw no improvement. Perhaps Nexium is a better option for her, and seems to be better for the more difficult refluxers.

You may be able to ask if you can try Nexium rather than undergoing the pH probe- especially as he does seem to understand it won't pick up all cases of reflux. It may be worth asking, but it does depend on waht you think too.

Perhaps she has food sensitivities and a restricted diet may be more effective than medications for her.

Have you gotten that referral for a speech therapy assessment yet? Did you get a chance to talk to the paed about that? Maybe it would be better to get that organised before any tests as they may be able to give you a different perspective entirely.

Gosh, it isn't an easy predicament!! I don't want to dissuade you from doing the probe as it just may give you the answers you need too! It's best to know everything that is involved too, esp as I know some drs who believe if it doesnt show reflux, then that can't possibly be the problem and it is completely discounted.

Perhaps a motility medication would be helpful too, something like Motilium or Erythromycin (at low dose). Sometimes that can work for refluxers too, so there are still a lot of options (and therefore lots of confusion too).

Hopefully you will get answers somehow as there is obviously a problem. Does it go back to the oral aversion she has learned because of reflux or whatever other reason. I still think a speech therapy assessment is really important too, and is perhaps more urgent than a pH probe.

If you get a chance, I think discussing that with the paed would be helpful too.

By now your head is probably swirling, sorry. I don't mean to make matters even more confusing. It isn't an easy decision to make regarding the pH probe, and it is something you obviously would need to sit down and talk about some more with the paed. Do you have an appt with him coming up?

Glenda

[sloaneranger]

Hi Glenda

Thanks again for your speedy reply, very impressed. Thanks for the info on the probe test as well.

In answer to your questions:-

1. Losec is given in a wide neck 5ml syringe (Nurofen syringe actaully) and tablet is dissolved in cooled boiled water. Currently 2 x 10mg per day. All pellets are given in about 3-5mls water depending on how clever we are at our squirting. Will give 1/2 hor prior to food from now on.

2. Have made an appointment with Speechy - not for another fortnight though unfortunately. Pead thought that I could consult a Speechy, but when asked if this was a waste of time, he said it could be or not?? (usual answer).

3. Will quizz Pead on probables of the pH probe test. From your advice, my research and talking at lenght with Suzie this morning, sounds as though it is just another "inconclusive" test option for reflux. Will it (outcome) make any difference to breast refusal - I doubt it. I will quizz Pead on Nexium as well and perhaps more about Losec as well.

I don't have any trouble with testing/drugs per say, - as long as they will treat/diagnose something. To have a negative test would not surprise me in the slightest, and to put my little on through that would be a waste of time and cause great stress. Perhaps they just offer these tests to keep the parents happy?????

I'm seeing my lactation consulltant lady again on Thursday. We might try the "starve" technique, wherein, when offered the breast at a time when she "should be hungry" (DD displays no huger signs) and she refuses, thats it. No more until the next 4 hour window and so on and so forth until she realises that she is hungry and breastfeeding quenches this desire??? I'll continue with solids as well. Will be interesting to see what happens.mmmmm just an idea, but I'm sick to death of the circus of pain we both go through at feed times.

I'll keep you in touch. You (and Suzie) are just wonderful, truely saving the health of parents and perhaps even indirectly lives. Well done.

Sloaneranger.

[RISA]

Hi,
I'm sure Suzie will agree with me that we are happy to help if we can, but thank you for the lovely words. Maybe one day there will be enough funding to be able to properly help families, and reflux will be a recognised condition that causes so much stress!!!

It sounds like you are doing pretty well with the Losec. Just remember to be as gentle as you possibly can be so none of the granules are damaged, and I hope you notice a change just with altering when you give it that little bit.

Re the speech therapist, I'm sure there will be something to learn from their assessment. It's quite amazing what they can pick up, when we can be watching the same sequence of events. My son saw a speech therapist for being unable to chew an apple well, and she picked up that not only was he only chewing with his front teeth, he also didn't know how to go about moving food around in his mouth, to use his back teeth. Sometimes simple things can make a difference, so I hope you also find the same. It surely must be worth trying anyway.

pH probes can give valuable information, and I wouldn't say they aren't un-necessary- but all tests have their place. I really don't think any of them can be used to diagnose reflux unfortunately. They can provide specific information, and one of the big ones with pH probes, I think, apart from confirming reflux in some people, it can also confirm whether symptoms correlate with reflux eg a cough that happens at the same time as an acid reflux episode confirms the cough is related to the reflux .

I think it's a very valid point to ask your paed- whether doing the probe will change treatment. If yes, find out how. If no, then there will be lots more questions, I'm sure.

Interesting technique from the lactation consultant. It just may be worth trying, though I'm sure it will be hard on you to do that!! I'm sure that insisting she feeds isn't a great idea, so doing the opposite just might help. So hard to know, isn't it!!!

I do hope you find some answers somehow,

Glenda

[sloaneranger]

Dearest Glenda

An update on our situation.

We did the "starve technique" with the BF and it seems to have worked as my DD is now not refusing the breast as much. It was quite hard to offer, be refused then put her down to sleep on an empty tummy then have to go and pump off as much as I could!!! This went on for a week or so and she consequently put on no weight (did not go down though). She was getting by on 3 feeds per day!! However, she is now more or less happy to take the breast during the day most of the time, but still have to feed in a dark quite room with zero distractions etc and feed before she has a snooze. Solids are going OK and we practice the sippy cup each day. I cancelled the speechy as I don't feel there is anything wrong in that area that is affecting things at present, but will be vigilent.

We had made a decision that if this last ditch effort did not work, I was going to book myself into a health retreat for a week and my DH would be at home 24/7 in an attempt to get her on the bottle and go cold turkey weaning from bf. Perhaps she picked up on this, who knows. I could not be around for the total weaning, listening to her cry in hunger for 24/48 hours until she accepted the bottle and my boobs would no doubt give me grief as well.

On the reflux front, we have stopped the Losec and Mylanta (made no difference) and declined the pH probe test. She is happy within herself and we will battle on at this point in time.

Anyway, small steps, but in the right direction nevertheless.

Once again, thanks for your support, advice and most of all reassurance on all fronts, soooo much appreicated. :hugs: :yelclap: :thumbsup: You are fantastic!!!!

Sloaneranger xxx

[RISA]

Hi,
and WOW!! I'm sure that approach must have been incredibly difficult to do, but it is what worked for you all, and that is what is most important! If anyone is reading the thread and considering that approach though, they will need expert medical guidance to achieve such wonderful results (and what works for one may not work for another).

I hope that you continue to see improvements now that you are getting her to feed okay, and although I'm not sure how much I actually helped, thank you for the vote of confidence.

Glenda :)