help with reflux from residential stays

[suemumoftwo]

Hi,

I have an almost 12 week old baby who has reflux, although it doesn't sound as bad as some of the mum's who have posted here on bub hub. Its still bad enough though to mean that he isn't sleeping at all during the day anymore - sometimes he might have a good day and we'll have a couple of 45 min sleeps but it seems like those days are now gone. Today it was 30 mins x 2, and he obviously would like more sleep as he is grumpy and wanting to go back to sleep but can't seem to. Nights are okay, usually two feeds per night but if he is feeling sicker than usual then it is more. Weirdly he seems to just go straight off to sleep after his bath and a feed (which is sometimes pretty token) and sleep really well - why can't he do this during the day?

He is on Losec and we are going to start him on Zantac also on the advice of his dr. We also have been lucky in that both the dr and the paed have said reflux from the beginning.

However, I also have a 3 year old to look after and am getting exhausted emotionally and mentally if not physically at looking after the family (although my husband is really great, I should mention!). I am wondering about the likelihood of being able to get some assistance with my baby's sleep at the Ellen Barron Centre. Our first child had lots of sleep issues and we ended up there (when it was Riverton) and it was a lot of controlled crying back then, which I think has now changed. However, I believe it caused a lot of separation issues for our first and I'm not convinced it really worked actually. I had to work very hard to get his sleeps right but I don't have the luxury of doing that this time.

Also I had quite severe PND after child No. 1 and was feeling very proud of myself for not succumbing this time - I'd put in place a whole lot of things to ward it off. However, all plans are rapidly becoming unravelled and I'm feeling a bit like I must be the most boring person on earth because I'm so tired all I seem to talk about is the sleep situation for baby no. 2. And cry.

So, what is the general feeling regarding attending somewhere like the EBC in terms of managing the reflux and getting sleeps in, particularly if you don't want to hear them cry for hours on end? I've rung Karitane (a few times) who have been very sympathetic and said it can takes weeks to get results. Ouch.

Thank you, I would value your opinion.

[RISA]

Hi,
Gosh, it sounds like things are really tough for you right now, but I hope you know how well you are doing! (even if it doesn't quite feel like that just yet)

I don't have any current experience iwth EBFC, sorry, so all I could suggest is to contact them and ask loads of questions.

It sounds though like the reflux is not yet well controlled, so that's great the doctors are still looking at different ways of dealing with the reflux. (I hav e read recently that losec and zantac must be given 4 hours apart, otherwise the losec is not effective.) I thought I would mention that, so you are aware, but please confirm that with your pharmacist.

Has anyone suggested the possibility of your bub having a food sensitivity issue? MEdical research is finding that a large percentage of reflux babies have allergy or intolerances to foods, and in particular to cows milk protein (and sometimes soy protein and other foods as well). It may be worth talking to your doctors about that possibility- you never know, it may just help get the reflux under control.

With regards to not feeling so great now, please don't put too much pressure on yourself, and expect you can cope without sleep and without a break indefinitely. I don't think anyone could do it, without feeling depresed. I think admitting that you are feeling like htat is a very brave step, and I admire you for being able to do that. I wish I had, rather than pretending to myself that I could cope and was okay when I wasn't.

Please let your doctors know how you are feeling, and please try and look after yourself. Have you thought about joining RISA, so you can get extra emotional support etc? We have a coffee morning planned very soon (next week, I think), and I gather you are in the Brisbane area- so that may also be beneficial.

Perhaps the additional emotional support would be helpful and they (the other parents) may be able to offer you some ideas too.

I hope that helps, and please be kind to yourself

Glenda

[suemumoftwo]

Hi Glenda,

Thank you for your extremely prompt reply. I have talked to my extremely sympathetic pharmacist (in fact, all medical people I've spoken to about this have been great - all those having trouble should just move to Lennox Head!) and he said he can't see any reason to space the Losec and Zantac so I haven't worried too much, although I can't say I've been too consistent as yet with the Zantax as I keep forgetting! Too tired and a bit overwrought after too much crying.

I have also been off the main dairy products of milk, cheese and yoghurt etc for the last few days and moved my little one into a cot as one of the nurses recommended this. He was too big for bassinet but I was reluctant to move him out as I could at least jiggle the bassinet. Still it wasn't really helping so now he is in the big bed.

I can definitely report that eating lentils is a big nono - yesterday we had a shocker and I think that was the cause.

Apart from that there is no real change and in fact it feels like things are getting slightly worse actually! I am booked in for a day stay at the local sleep clinic on 30th June but am reluctant to see it as only a sleep resistance issue. Just wondering what you (and others) have experienced with your reflux babies - even if they are no longer spending 8 hours a day crying does this necessarily mean they are 'fixed'? I feel like there must still be some discomfort as he still only has short cat naps no matter what (except for about one day in every 8 or so when he will have a really long day sleep of about 2 1/2 hours. The rest of the time its 20 mins twice a day and with grumpiness, irritability and crying.

Thanks again for your advice.

Suzanne

[RISA]

Hi,
I'm really glad you have found your doctors and everyone to be sympathetic and helpful. That is fantastic to hear, and I wish it could be the same for everyone!

with regards to the dairy, it is important that you remove all traces of dairy, rather than just the main ones. Some bubs are so sensitive they will react to minute amounts, and its a matter of reading all labels and learning what the hidden ingredients are (like whey, casein, lactalbumin etc). It can be really hard to do, but for those bubs who are allergic or intolerant to cows milk, it can make the world of difference. If you do want to investigate that further, it may be worth talking to a dietitian too, especially if you want to maintain it for any length of time- getting your diet balanced is really important (although that goes without saying, doesnt it!).

It is hard to know when our babies will be as comfortable as possible- some times medication will help, but isnt the full answer either. You may not necessarily ever have a baby who appears to be cured, but you need to feel that they are reasonably comfortable too, if that makes sense. Just be guided by your instincts as you have been doing already, while being aware that perfection may not be attainable.

I think that a sleep stay is still worthwhile, even if the reasons behind his sleep problems are due to his reflux. I eventually had to seek help with my son's sleeping (or lack of), and they told me that even though he had reflux, he could learn to sleep better- and they were right too.

Sometimes too, the reflux makes them so overtired, it can be difficult to get them to settle. Also, being overtired also seems to flare reflux even further, and if you can get the sleep sorted, then sometimes the reflux settles too. It's like a vicious cycle and if you can somehow break it, it can help.

It sounds like you're doing well; you are investigating different ways of helping him, and it sounds like you have a supportive network around you too. Dealing with reflux is not easy, but try to take it one day at a time, and dont look too far in the future either (otherwise it can do your head in!)

I hope that helps too; remember to trust your instincts, and please look after yourself as well.

Glenda

[suemumoftwo]

Hi again Glenda,

Thanks for you advice to date. I have actually taken myself off all dairy and soy products (which has been very hard as they were my main comforts!) and I'm not sure what the final factor was but generally (ie two days out of three) things are much much better. He turned 13 weeks, went on the Zantac as well as Losec, I started wrapping him in cot sheets instead of wraps and went off the dairy. So not too sure exactly which worked, but it has been blessed relief when it has worked. I'm sure other mum's know exactly what I mean here!

The only other question I had was to do with wheat. A family nurse came to visit yesterday and since I've gone off the diary my little one has been doing very very stinky farts which he wasn't before. I asked her about it and she said it was possibly a wheat intolerance/allergy and to investigate this option also. Have you had any experience of this? She seemed surprised no-one had mentioned it?

Also, the elevation of the bed...I read on your website as well as Karitane that this is no longer recommended. Both the nurse and the doctor were surprised when I said this and so I wondered why it was no longer recommended. Would you have any information on this as well?

Thanks again for all your help - its so great knowing there is someone who actually knows about reflux to ask!

Suzanne

[RISA]

Hi Suzanne,
I am happy to help if I can (though please keep in mind that I am just a reflux mum- I don't have any qualifications and I can only give you ideas and perhaps a different perspective etc)

It is fantastic to hear that things are so much better now- though to figure out what is helping and what isn't- that's going ot be fun (not!).
Intersting that he has started having 'very stinky farts' since you went off dairy. It is entirely possible there are other factors there, and yes, your family nurse is right in that wheat or even gluten can sometimes be a factor. I didn't mention it in the first place as listing a lot of possible foods can be very overwhelming and very offputting; and dairy is the most common culprit. It can be so complicated, and may be best to talk to a dietitian who can help you sort it all out. There is some great information here at www.ozemail.com.au/~breakey
Keep in mind too that about half of bubs with sensitivity to dairy also have a sensitivity to soy (like I said, it can get complicated, and getting advice from a dietitian would be my recommendation since you have a high degree of suspicion it is a factor). You may also find it helpful if you kept a written record of what bub is like- feeds, sleeps, any problems with either, any reflux behaviours- vomits, crying, gulping, swallowing, hiccupping etc; dirty nappies and stinky farts- and anything at all you notice. Also keep track of what you are eating- when you do that, you may actually pick up if there is a particular food that is causing problems, especially as you are still having 1 day in 3 thats not so great. Keep in mind that it may be a few days later that you see a reaction. Have you started eating somethingelse to replace the dairy you aren't having at the moment? Perhaps if there is a particualr food you are replacing it with, that may be what is causing the stinky farts- just an idea. Like I said though, a dietitian may be able to help you work it all out.

With regards to elevating the head of the bed, it is no longer recommended in babies under the age of 12 months (but can be tried in children over 12 months if parents want to). One of the reasons is for safety; but the other is that it is not supported by medical studies. If your doctor/nurse want to know more, there is information in the cochrane review (it reviews several medical studies) that says "Elevating the head of the crib for treating reflux in the supine position is not justifiable". It also says "the supine 10 degree reversed-Trendelenburg position seemed not helpful in decreasing acid gastro-esophageal reflux in regurgitating infants”.It is possible that with more participants the trend towards horizontal positioning being superior to elevated may have attained significance" and there is a lot of other information in there. The name of the review is Metoclopramide, thickened feedings, and positioning for gastro-oesophageal reflux in children under two years (Review) by Craig WR, Hanlon-Dearman A, Sinclair C, Taback S, Moffatt M. It was published in The Cochrane Library 2007, Issue 3.

Qld Health's latest safe sleeping guide also recommends "Infants with gastro-oesophageal reflux should be placed on their back to sleep on a firm, flat mattress that is not elevated" (citing the above review).

I hope that information helps. From what I know, studies confirming that elevating the head of the bed were done back in the days when babies were laid on their tummy to sleep. Now that they are laid on their backs for safety reasons (risk of SIDS), studies are showing it doesn't help.

Take care, and good luck figuring it all out. It sounds like you have made a huge amount of progress!

Glenda