[miyim]

Hi
My beautiful girl has silent reflux and laryngomalacia (floppy larynx) and, despite being on losec for a week, the symptoms just seem to be getting worse. She is currently six weeks old and has become increasingly unsettled after feeds. Her breathing is very squeaky and laboured and she is constantly sticking her tongue out and clearing her throat. It takes us a long time to settle her to sleep and she won't won't sleep unless in the sling or being held. When we put her in bassinet she wakes up after 10-20min crying and then we have to start the whole routine of trying to settle her (which just involves more feeds and I know this can exacerbate the problem). I BF and she feeds every 2-3 hours which means no sleep or respite. She has not had a blue spell yet but with the worsening symptoms I am starting to get worried about her breathing as she does appear slightly blue around the mouth (not lips) all the time and she is not getting enough sleep as she wakes up coughing and gasping.

The paediatrician prescribed Zantac but she hated the taste so we changed to 10mg Losec. She has been on this for a week but I have not seen any improvement yet. I just read that you need to give Losec at the same time everyday which I will start doing. I have been breaking the tablet in half and dissolving it in water in a syringe and adding a bit of breastmilk. She still finds this hard to take and a lot of the granules end up over her face because she spits it out.

I have not completely eliminated dairy from my diet but I have cut down. But I am drinking soy milk as an alternative. Do I need to cut this out as well? Her poos are frothy, explosive and green but I was told by the paed that this is normal.

So, hoping some of you can help!

1. How do you give your LO losec so that they swallow it? What has worked for you and how do you administer it so it is most effective (ie. dissolved in water, breastmilk etc).

2. Did cutting out just dairy help or did you need to cut out soy products as well?

3. Did your LO have green poos that were 'normal' or should I be concerned about lactose intolerance? I do have a fast letdown so there is a concern about foremilk/hindmilk imbalance but as she does seem to drain the breast I would think she is getting the hind milk.

4. Can anyone recommend in Sydney a good paediatrician, GP, paediatric ENT and gastro specialist. I live in lower north shore but can travel. I am sick of going to GPs only to be told that I have a colic baby and need to learn settling techniques. Please PM me details if you can.

5. I am also interested in any rec's for a good osteo/chiro who can help infant reflux.

I need to get help for my dear LO as I hate to see her suffer and be in pain. Hoping you guys who have been through similar situations can help. Thanks!

This post has been edited by miyim: 29/01/2013, 06:06 PM

[charlottesmum04]

Hi first of all I want to tell you that no matter what breastmilk has lactose so the only way to rule out a lactose intolerance is to go onto an elemental or semi elemental formula.. However! Truely lactose intolerant babies are usually so sick and failure to thrive that it is usually picked up within weeks of birth and would know it.

What you are trying to rule out is Cows Milk Protein Intolerance (CMPA) which is a common cause of refulx and GERD. Alot of babies with CMPA are also soy intolerant so if you are willing i would do a trial of soy free.

DD is on semi elemental formula and still has green frothy poo's. The paeds have just decided to test her poo for several things ( they didnt explain much) but my point is they can test it to find out why.

Our paed screamed at us for using chiro, but suggested bowen therapy as a good option. Bowen therapy is often very cheap for babies as it literally takes 5 min a session so they usually squeeze you in between clients. It didnt work for us but i certainly know where you are when you are willing to try anything.

I am sure you are doing the usual things like keeping her bed upright as possible ( 45 degree's is optimum but hard to do with a little little one) and keeping her upright after feeds.

I will come back and write more after i sort out dinner. Just know your not alone.

[miyim]

Thanks charlottesmum04.
Ok, so she is gaining weight so I am going to rule out lactose intolerance. As for the dairy/soy, I can try eliminating this from my diet. I was going to wait to see if the meds worked first….

[lovealpacas]

Hi OP,

DD2 is 5 months old and also has silent reflux. She has been on Losec for 2.5 months now. She takes the Losec in liquid form, we get it from a compounding pharmacist. She has 1mL twice a day, and I use a syringe. I just stick it in her mouth in her cheek towards the back so she can't spit it out, administer it slowly and all good. And the pharmacist makes it banana flavoured so she takes it all.

In the early days a baby carrier was key during the day. She has only just now started to sleep in her cot during the day. We only managed to get in to the paed 2 weeks ago and she told me to go off dairy (DD2 has exema as well) so that's been going well for 2 weeks now. I only have soy milk in my coffee in the morning, or if I have cereal.

I was also feeding her too often- every 2 hours during the day. I was misreading her cues- she would cry in pain, I thought she was hungry so would feed her, and the cycle continued. Since dropping her feeds to between 3-4 hours, she is much happier. She even laughed for the first time today

Her poos are still a bit explosive and frothy, especially when she is in the carseat (must be the angles), but I think they're settling down now. The paed said to give my dairy free diet 4 weeks to work, then have dairy for a couple of days to see if there are any changes in DD2. HTH OP

This post has been edited by lovealpacas: 29/01/2013, 07:00 PM

[miyim]

That's wonderful to hear love alpacas that your LO is so much better. It is great hearing success stories because it gives me hope there is light at the end of the tunnel.

I was told by my paed not to use a compound form as it may be unstable. But I am willing to try that if DD continues to spit up the tablet.

I am a bit confused about how to go 'dairy free'. I can cut out the usual culprits - milk, cheese, butter, yogurt - but what about all the other foods that may contain the cows milk protein. Have you found that just cutting out the obvious dairy foods is enough? Similarly for soy. Soy is found in a lot of packaged foods such as cereal, muesli bars etc. Where do I draw the line??

[threetimesblesse...]

I have sent you a PM

[lovealpacas]

Paed said traces of dairy were ok, just cut out the usual subjects- milk, cheese, yogurt, ice cream (noooooo!) and chocolate. Bread is ok, but I have pretty much avoided everything else that has milk solids.

When your paed says the compounded Losec is unstable, what exactly did they mean by that? You have to refrigerate the Losec and shake it before use, but we have definitely noticed the difference. Until we saw the paed 2 weeks ago she was only on 1 mL once a day, compounded at 5 g per mL. The paed said we could give it to her twice a day and she has improved so much. When she was taking it once a day, you could always tell when it was getting close to med time. Like I said, she's sleeping during the day, smiling and laughing.

Eta when you use the syringe, make sure you stick the syringe right into her cheek towards the back.

This post has been edited by lovealpacas: 29/01/2013, 08:06 PM

[lucky 2]

Hi there, if you are at all unsure about how to manage bfing/feeding then I'd encourage you to see a LC.
It's true that unsettledness does peak at 6-8 weeks, that might be a factor but I'm not saying that to in any way diminish the current difficulties.
If you have been advised by your paed to remove cow's milk from your diet wouldn't it mean that you need to removal all sources, including additives in other foods?

Would you like me to move your topic into the Babies with special needs forum?, I wonder if you'll get more responses in regards to the laryngomalacia.
Let me know.

All the best.

[miyim]

Lovealpacas - With regards to the compounded Losec, I think the paed was concerned about not being able to verify that the correct dosage was being administered based on how the chemist compounded etc. In other words, she can't control the process of how they compound etc. I have read on other posts that some people also don't have success with the compound vs tablet. However, I might give the compound a go based on the comments received.

Lucky2- I have seen a LC twice. My BF is still not perfect and I still suffer from the fast let down but LO is getting better at managing it. I have not been advised to cut out dairy but am willing to if it helps. That being said, like you have commented, I'm not sure if you have to remove all sources. But I might begin with reducing my dairy like love alpacas.

I would love you to move my post to special needs if you think it will get more replies. I'm a EB newbie so need the help! Thanks

[lovealpacas]

I should probably add that until 2 weeks ago I was a prolific dairy consumer- our household could go through 3L of milk every few days, I love my ice cream for dessert and can eat big chunks of cheddar cheese in single sittings, so DD2 is now getting a lot less cow protein than before. It will be interesting to see how she goes in 2 weeks when I follow the paed's advice and reintroduce dairy to my diet. DD's eczema has also settled down a great deal, apparently eczema and reflux go hand in hand with babies who have cow protein intolerances.