HELP - Silent Reflux + Laryngomalacia
What has worked for you?
, Jan 29 2013 06:00 PM
18 replies to this topic
Posted 29 January 2013 - 06:00 PM
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!
Edited by miyim, 29 January 2013 - 06:06 PM.
Posted 29 January 2013 - 06:18 PM
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.
Posted 29 January 2013 - 06:35 PM
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 firstā¦.
Posted 29 January 2013 - 06:49 PM
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
Edited by lovealpacas, 29 January 2013 - 07:00 PM.
Posted 29 January 2013 - 07:50 PM
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??
Posted 29 January 2013 - 07:57 PM
I have sent you a PM
Posted 29 January 2013 - 08:00 PM
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.
Edited by lovealpacas, 29 January 2013 - 08:06 PM.
Posted 29 January 2013 - 09:31 PM
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.
Posted 30 January 2013 - 07:06 AM
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!
Posted 30 January 2013 - 07:48 AM
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.
Posted 30 January 2013 - 08:27 AM
Losec didn't work very well with our DS and he ended up on a very high dosage of Nexium but it can also take a few weeks for the meds to start working properly so its still early days.
Posted 31 January 2013 - 08:59 PM
Hi My LO has tracheamalacia which is floppy windpipe (but narrow too) and reflux due to allergies and dysphagia (swallow issues) and more.... where do I start.. a lot of LM, TM and BM (Bronchomalacia ) have reflux. We (mums) think its because of the low muscle tone.
My boy is allergic to dairy and I cut out ALL forms because when its the intollarnce its a build up that causes it. If you had a birthday cake once a year you might be fine, but whey powder in foods every day will bring your levels up higher so a birthday cake will send them over the limit..
Dairy can be the cause of green poos but also their stomachs forming properly and can be the saliva going into tummy or another food altogether. some green poo can be normal though. Execma (sp?) is a symptom of allergies which can be food inc numbers and preservatives, environment or lotions. both my little ones have this and on huge diets. If the excema is getting better I would try to cut it out completely for 2 weeks then introduce. Maybe try rice milk so its not getting confused with a soy allergy. My boy cant have soy milk but doesn't appear to have reactions to soy in products, but I have to work it out. only just got retested on soy milk and he is def allergic. When my bubs was little and didnt know what was causing the choking and blue spells he had tests on allergies as part of a study. I had to cut out all 3 known proteins, milk, soy and egg completely. he then had a ph probe to measure his reflux and it was normal when not eating these 3. he was retested as a big bubs as choking in his sleep and was still normal - still not having all those 3 but soy in bread. we found he is choking on his saliva and when teething its worse and his alarm goes off and sometimes doesnt cough it up.. we have an angle alarm that is a life saver - Literally !
Cant remember your LM question so will post this and re-read.
Posted 31 January 2013 - 09:03 PM
You def need a good ENT esp if she is clearing her throat like that. that sounds like the LM doing it. how old is she? we found that it helps if bubs can extend their heads out to the side to open airway or sleep on their tummy. BUT do NOT do that unless ok by dr. we also recommend the angle alarm in case they don't turn their heads properly. but they need to be older for tummy and do with full care.
I have pm'd you too with more info.
Posted 31 January 2013 - 09:16 PM
My little girl, now 2, has laryngomalacia but is outgrowing it. I am on lower North Shore too.
I was constantly feeding which was so hard with a toddler (now 4). She would go blue in the mouth and was not gaining weight.
I was dismissed by so many drs "babies are noisy" etc until I found proper help.
Will PM my amazing paed. All will be okay!!!
Edited by lucy77, 31 January 2013 - 09:32 PM.
Posted 03 February 2013 - 05:40 PM
Thanks everyone for your comments, advice and support.
To give you an update:
I was lucky to get in to see an ENT specialist last week. What I thought was a simple appointment (especially since my paed refused to give me a referral because I was 'overacting') turned into a 6 hour wait in the children's emergency ward and an overnight stay in hospital to have her sleep monitored for possible sleep apnea. It was quite an ordeal and something we we were not expecting (we had to go to the hospital immediately after the appointment with the ENT).
We saw a gastroenterologist, a speech pathologist and sleep specialist. Fortunately, she has mild laryngomalacia and the sleep observation showed no drops in oxygen whilst sleeping. We still do have to have a formal sleep study done just to make sure about sleep apnea and check her snoring (apparently it is not normal for babies to snore). Due to her breathing she is more at risk of SIDS so I have been advised to brush up on my CPR. I can also use a monitor but the sleep paed did warn that it works on movement and babies can still move as if trying to take breaths but not be breathing so it is not foolproof.
The gastro specialist does not think reflux is that of a concern (although the ENT specialist seems to think it is) and the sleep specialist thinks the laryngomalacia is making the reflux worse as the heavier breathing associated with laryngomalacia can draw up the stomach acids. I am to continue with losec but I am changing to compound and reducing the dose to 5mg.
Her oxygen levels did drop whilst feeding so we may need to consider bottle feeding to help her cope with feeding. Does anyone suggest any type of bottle/teat? I need to call the speech pathologist to see what she recommends. We tried to bottle feed her this morning but she refused to take it. I'm not surprised though after all the poking and prodding from the hospital.
Unfortunately I was so exhausted and overwhelmed I forgot to ask the gastroenterologist about dairy but I will definitely reduce my dairy intakeā¦.especially since she is stuffy in the nose and this might be allergy related.
So, that is where I'm at. Hopefully the formal sleep study won't show anything significant to be concerned about and my LO will grow out of her laryngomalacia and reflux soon. I will be watching her sleep like a hawk as I'm scared about SIDs but hopefully she will be ok.
Posted 03 February 2013 - 05:52 PM
I've sent you a pm with paed, gastro, allergist/immunologist & ENT info. My son has a similar problem.
Soy/dairy elimination was necassary for him. He is now on neocate (an elemental formula) at 2. Compounding Losec never worked for us. I spilt he tablet & put it on a spoon with water & then use a syringe to "wash" it into his mouth. I've done this since he was 4 weeks old with good success.
Posted 03 February 2013 - 07:25 PM
I hope all of the specialist attention will bring good rewards
Her oxygen levels did drop whilst feeding so we may need to consider bottle feeding to help her cope with feeding.
I haven't any knowledge with babies who have this condition but it might be worth checking carefully here as I was under the impression that vulnerable babies are more likely to be stable when breast feeding as opposed to bottle feeding.
I wonder how bottle feeding would be advantageous in this situation, ie a baby struggling to feed, if bfing is easier and less physiologically stressful for baby.
Did baby go blue or was it picked up on the monitor?
I suppose they could do the same test when baby hads a bottle feed and see the difference.
Obviously this would only be relevant for a baby who despite the issues is able to bfeed well enough to thrive.
I was also wondering if there was a LC who you can see who knows about this issue because ? if some positions for feeding would be better than others, ie upright positions are usually better for babies with reflux, mouth higher than bum.
All the best.
Posted 03 February 2013 - 07:44 PM
Oh hun I hope you are ok. Sorry to hear of bubs struggles. I have also read that you should not use the compound Losec as the little beads lose its potency after a few weeks and doesn't work towards the end of the bottle.
Please hang in there with the Losec - it took 2 weeks of giving it to her before it worked (split dosage but gave twice a day at the same time) AND only giving with water with the Neurofen syringe half an hour before food. Two weeks later it was like someone swapped babies with me! She finally slept for longer than 20 mins and stopped screaming. I cant help with anything else I am sorry - I too am on the lower north shore but my pead has retired.
The first pead I saw looked at my with pity at the end of the appointment and said, don't worry we wont charge you the full rate as your baby is fine and you just need some help!!! I wanted to punch him! Sorry that's a bit off topic!
Truly wishing you success through this fog and I hope you get some answers and clarity.
Posted 03 February 2013 - 07:57 PM
You poor thing OP. My son had silent reflux and laryngomalacia too. It was hell on earth. We had a really bad first five months. Only sleeping an hour or two, only sleeping upright etc. Then, at five months everything clicked and he became a happy settled baby (he woke once - just once - through the night between five and twelve months.
We used losec, same delivery method as you. He got better at taking it as he got older. It does take a week or two to kick in, and yes, we gave it at the same time every night. I was also asked to avoid the losec suspension as it's not as stable.
We saw a chiro with great success, highly recommend.
He is now three and his laryngomalacia is much improved. He still has a very slight stridor but on the whole, it's fine and not in need of any further treatment.
Good luck mama. I have been where you are and can say it is the hardest thing I have experienced (including my youngest being born with a lifelong disability, so I don't say that lightly). Hang in there. It does and will get better.
Edited by claireabell, 03 February 2013 - 08:00 PM.
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