GER/GERD in 7 week old baby and "possible" dairy intolerance. To medicate or not? (sorry LONG...

[dot1]

Hi.  Thought the allergy forum would be the best place to post, since GERD, eczema and allergies are so closely related...and I'm guessing lots of people have experience here with both.  I've searched the threads and couldn't find one that seemed close enough to our situation.  Sorry if this is long.  I'm not sure where else to turn as we live in a small town with one crappy pediatrician who I refuse to see.  I'll be seeing our family GP next week about this....but I want to be prepared and researched first.  There is no such thing as a pediatric GI in our area....would involve an 8 hour car trip, so this is not an option.  I've also checked out some of the forums on infantreflux.org 

dd2 has GER...and I'm suspecting GERD.  Has not been physician diagnosed yet....but I suspect they will diagnose it based on clinical symptoms (more on this later).  Currently napping upright in the ERGO on me (the only place where she'll nap more than a few minutes it seems.  Too bad she doesn't like it when awake too).

 

dd2 is 7 weeks old, EBF and gaining weight well.  Since week 1 has had a rash on her face, ears, chest.  Midwife said it was just a normal newborn rash.  However,  it got really bad by about 5 or 6 weeks and then scaly,crusty in patches (looked like eczema to me) - nasty patches on her eyebrows and ears.  She seemed super itchy (always rubbing her face on anything it touched).  I started off by treating with humidifier, warm washcloth wipe followed by olive oil.  Moved onto a moisturizer (KEYS luminos or tortuga www.keys-soap.com ) - helped a tiny bit but not a whole lot.  Then it dawned on me that I should try eliminating dairy from my diet.  Within a few days I noticed the rash starting to clear and her skin getting softer.  HOWEVER, this is also the time when I upped the intensity of moisturizing (3-4 times/day washcloth wipe followed by application of thick layer of KEYS moisturizer.  I had a couple of slip ups in the diet (lactic acid and butter flavour in a sauce) and ate food cooked in butter at a christmas party...the following days noticed some new rash starting.  I still notice little patches of scaly red areas throughout her body, but they're pretty mild and I can clear them up with spot moisturizing...which makes me think it's just a dry skin thing.  Currently her skin looks mostly great - the softest it's been since birth.

 

The jury is still out on the dairy allergy/intolerance thing as I have only been off dairy 1.5 weeks, had a couple slip ups.  I will continue on a strict dairy elimination diet for another couple of weeks and then evaluate the results.  I chose to do only dairy first (instead of soy and egg also) as I wasn't convinced we could do all 3 top food offenders without cheating.  If I'm going to do it, I need to do it right (to be scientific enough to draw accurate conclusions)....but will probably try eliminating soy and possibly eggs next, depending on how things go....

 

Now...the GERD or GER (reflux):  dd has been a big spitter since birth.  multiple times after every feed, often an hour or two later (and the spit up sometimes smells like vomit).  The only positioning that seems to help is being completely upright (in Ergo or wrap...which she ONLY likes when already sleeping!).  Tummy napping on top of me helped her sleep more deeply, but she still did spit up on me a few times.  I think tummy sleeping would help...but I'm too afraid to try it yet, as dd doesn't seem to be able to fully lift and turn her head when on her tummy )she often just squishes her nose into whatever she's on, instead of turning her head to the side.

 

Other symptoms include:  silent reflux and coughing, often followed by stridor and wheezy/gurgly breathing.  At night (co sleeps with me on her side) will sound congested in her upper respiratory tract....although she can still breathe through her nose fine.  We sleep on a waterproof pad/cloths so I don't have to change the bedding 3 times/night!  After a spit up or silent reflux (especially the ones that have been sitting in her tummy a while), she will often (but not always) look upset and even start to cry.  She frequently arches her back, especially when being picked up from a seat, bed, etc. and will take a while to settle over my shoulder.  Throughout the day, she will fuss, worse when on her back....though she is generally consolable.  This gets worse in the evening.  Wants to nurse all the time it seems...but after the feeds is not settled.   Yet sometimes she is perfectly happy to play on her back (until she starts spitting up it seems...).  She seems to enjoy diaper changes.

 

Also has mucous in her stool and the colour is normal mustard colour.  Some BM's have been looking like runny yellow snot!   No blood though.  Again, my midwife said some mucous is normal....unless it is in big globs separate from the stool.  I'm thinking the mucous is from all the re-swallowed regurgitate?

 

Sleeps poorly when alone in bassinette that is elevated (swaddling helps a bit)....although when with me she will sleep a 3-4 hour stretch (have had an occasional 5 hour stretch), followed by another 2...and occasionally another hour or 2 - though she won't stay asleep later in the night unless latched on.  Not stellar...but definitely better than some babies!

 

Have also done some feeding modification (I have a fast letdown and ample milk supply) including feeding positions to decrease choking on milk and ensuring breast fully emptied (so she gets enough hindmilk).  This has made no difference whatsoever in her reflux...but has made her less gassy (not gulping so much air or lactose in the foremilk).

 

 She is obviously experiencing some distress (but then I wonder if this is normal fussing/fatigue as it's not all the time....yet she doesn't seem quite as happy a baby as my dd1 was).  It's just a "gut" feeling that she's in pain from the reflux as her fussing does seem to be worse after spitting up or a silent reflux episode.

 

Now the BIG question.  Do I medicate or not???????  I'm not certain I can wait for the results of elmination dieting....nor am I convinced that the eczema and reflux are related - I suspect 2 separate issues as there has been ZERO improvement in reflux since being dairy-free, yet an improvement in eczema.  In fact, the reflux has gotten worse.  I think her LES is simply immature/malfunctioning.  I'm so afraid of this progressing and causing permanent damage to her esophagus and airways (we have a family history- my dad and brother, with GI problems, diverticulums, IBS, h pylori infection, etc....but fortunately I don't have this....I was breastfed 11 months - long back in the day!).  Yet I'm equally afraid of the medications permanently altering her gut flora and putting her at risk of other problems, including autism, GI illnesses, pneumonia, etc.  

 

Wise ladies with GER/GERD babies- please share your insights!  What would you do?  Is it bad enough to medicate?  My appointment with GP is next week....around the time I will have been dairy free for 3 weeks (long enough to evaluate results I think).  Thanks for reading this far :-)

[scsigrl]

I have a 10 week old.  Been off dairy Since week 5 (TERRIBLE skin, way beyond baby acne and also cradle cap just as bad.  It was weeping!)  After 2 more week of the crazy spitting up, gagging constantly and all the things you are mentioning we put him on meds.

I regret not doing it sooner.

I am TOTALLY not into giving my kids meds.  I didn't really want to but he's so much better off now.

Follow your gut. I did and could not be happier!

[dot1]

Thx scsigrl!  Can i ask what med and what dosing and what symptoms improved?

Edited by dot1 - 12/13/11 at 2:06pm

[sosurreal09]

It can take up to 6 weeks for dairy to get out of both your symptoms. It restarts at every slip up. http://www.kellymom.com/store/freehandouts/hidden-dairy01.pdf

[Bokonon]

Originally Posted by sosurreal09 

It can take up to 6 weeks for dairy to get out of both your symptoms. It restarts at every slip up. http://www.kellymom.com/store/freehandouts/hidden-dairy01.pdf

I would also highly recommend eliminating soy as well.  Many people who are sensitive to dairy are also sensitive to soy.

[scsigrl]

Originally Posted by dot1 

Thx scsigrl!  Can i ask what med and what dosing and what symptoms improved?

He's on .8 mg x2 daily of Zantac.  

He doesn't have the silent reflux and choking any more.  He still spits up but it's "normal" as far as amount.  He was excessing in the spit up dept. before.  The back arching screaming out while nursing has stopped as well.  

[changingseasons]

I haven't read the whole thread (or even the whole post), but wanted to chime in quickly about ppi's. The function of a ppi is to neutralize stomach acid, so that it won't burn when it goes into the esophagus. The function of stomach acid is to start the digestion process. Without that, your body has to work much harder to digest foods. If food isn't digested properly, and enters your bloodstream without being fully broken down, that will trigger your cells to attack it... leading to food allergies. Not as huge of a concern when your EBF, since breastmilk is pretty broken down already, but definitely a concern when you're starting solids. Just keep in mind that every medication has side effects, whether you can see them or not. (I'm not saying that meds are always bad.. there is definitely a time and place to use them. Just be aware and educated before you decide to use one.)

[scsigrl]

That's true but as you said, BM is pretty broken down already and babies will a) usually outgrow GERD before solids are introduced and b) outgrow the dosage before and typically don't need it anymore at that point.

[talkingmum]

Hi there,

This sounds really nasty to deal with. My son who is now nearly 7 had reflux although he was never sick with it, he inhaled the milk and had aspiration pneumonia when he was 10 days old. We finally found giving a feed thickener before I fed him worked really well, from about 6/7weeks old to four or five months. It was something called nestargel and I think it was maize based. I mixed it with some expressed milk then fed him about 30mls via syringe before feeding. I wonder if this is quite different to an indigestion remedy.

My son now has asthma (which tends to occur when he has a virus), but he didn't have any obvious food intolerances - my feeling would be that controlling reflux is important if you possibly can. We had to raised the bed so he slept on an incline, and still feels this helps him now. I am still very occasionally am aware of the reflux shortly after he has gone to sleep if he is very tired/unwell or stressed. Hope this helps!

[dot1]

Originally Posted by changingseasons 

I haven't read the whole thread (or even the whole post), but wanted to chime in quickly about ppi's. The function of a ppi is to neutralize stomach acid, so that it won't burn when it goes into the esophagus. The function of stomach acid is to start the digestion process. Without that, your body has to work much harder to digest foods. If food isn't digested properly, and enters your bloodstream without being fully broken down, that will trigger your cells to attack it... leading to food allergies. Not as huge of a concern when your EBF, since breastmilk is pretty broken down already, but definitely a concern when you're starting solids. Just keep in mind that every medication has side effects, whether you can see them or not. (I'm not saying that meds are always bad.. there is definitely a time and place to use them. Just be aware and educated before you decide to use one.)

Thanks for taking the time to say this.  This is exactly my dilemma!  Weighing the impact of altering a stomach's acidity (and possibly leading to colonization with bad bacteria, etc.)....versus the potential damage that can arise in the respiratory tract with untreated GERD.  It's a risk either way it seems...just have to figure out which one is riskier.  GERD and asthma are closely linked - and the stridor sound I'm hearing after a coughing episode is what concerns me.

[dot1]

Originally Posted by talkingmum 

Hi there,

This sounds really nasty to deal with. My son who is now nearly 7 had reflux although he was never sick with it, he inhaled the milk and had aspiration pneumonia when he was 10 days old. We finally found giving a feed thickener before I fed him worked really well, from about 6/7weeks old to four or five months. It was something called nestargel and I think it was maize based. I mixed it with some expressed milk then fed him about 30mls via syringe before feeding. I wonder if this is quite different to an indigestion remedy.

My son now has asthma (which tends to occur when he has a virus), but he didn't have any obvious food intolerances - my feeling would be that controlling reflux is important if you possibly can. We had to raised the bed so he slept on an incline, and still feels this helps him now. I am still very occasionally am aware of the reflux shortly after he has gone to sleep if he is very tired/unwell or stressed. Hope this helps!

That sounds like it was pretty awful - a newborn with aspiration pneumonia.  Thank you for sharing your story - it's the asthma and other respiratory/esophageal issues that scare me...the reason I'm considering medication.
 

[talkingmum]

It was not much fun, no. One thing I would say is don't worry too much as if things are getting serious you'll know. The times we went into hospital he deteriorated quickly started going blue round the mouth, so it was obvious he needed to be seen. I wonder if a thickener for feeds is an option or perhaps that's consider more potentially damaging than Zantac. I am in UK and was going between here and Germany when Reuben was a baby so he was prescribed the nestargel in Germany.

[dot1]

Originally Posted by talkingmum 

It was not much fun, no. One thing I would say is don't worry too much as if things are getting serious you'll know. The times we went into hospital he deteriorated quickly started going blue round the mouth, so it was obvious he needed to be seen. I wonder if a thickener for feeds is an option or perhaps that's consider more potentially damaging than Zantac. I am in UK and was going between here and Germany when Reuben was a baby so he was prescribed the nestargel in Germany.

I'll look into nestargel.  thx for the tip.  Interestingly, the past 2 days have been better for reflux symptoms (she's not back arching so much and there's been a little less spit up during the day....but still won't sleep more than an hour in her elevated bassinette...sleeps way better with me on her side).

I have 5 more days till our GP appt.  Hopefully things will improve.  I'll post an update then,