Author Topic: wondering if an ED is a good way to go....  (Read 5207 times)

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Offline deckchariot

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wondering if an ED is a good way to go....
« on: May 21, 2011, 17:35:01 pm »
dd2 is almost 3 mos old and was diagnosed with reflux at 3.5 weeks and MSPI at 4.5 weeks.  So I'm dairy/soy free and she's on medications (prevacid 7.5 mg 2x a day and pepcid .5 mL 1x a day), but we're still not scream/pain free.  She rarely (if ever) completes a feed without screaming and it can sometimes take over an hour for me to get a decent feed in her (she's ebf).  She is gaining weight, so I guess my determination is paying off.  Her pediatrician has been wonderful in terms of working with us, however, because her reflux is still not controlled, she has referred us to a GI specialist.  She no longer has blood in her stool and most of her poops are normal yellow/seedy bf poops.  That being said, every once in a while (1-2x a week), she has some mucous in her poop, and her reflux is still not controlled.  So.....I'm wondering if I should try an ED if it's possible that there's something else in my diet that is bothering her.  My pediatrician and a lactation consultant have both advised me to wait on an ED, as they can be so limiting and challenging to do.  So I'm not planning on starting one right away, but I am anticipating that the GI specialist may recommend doing it, so I want to gather my info now.  What have some of the rest of you done and how did that go?  I know there are lots of different EDs out there - so what did you eliminate?  for how long?  when did you begin to introduce the potential problem foods back in?  And how often did you introduce a problem food?  And how quickly did you notice if your bub had a reaction?  After dairy/soy, what are the most likely targets?  Is it possible that the occasional mucous poop is due to some dairy/soy I'm not aware of or the reflux or something other than an allergy/intolerance?  And what did you eat when doing the ED?

I know it's a ton of questions, I'm just a bit daunted at the prospect and wanted to see how others handled it.

TIA
michelle
Michelle




Offline firsttimemummy

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Re: wondering if an ED is a good way to go....
« Reply #1 on: May 21, 2011, 17:39:12 pm »
remember dairy can take a while to completely go out of her system - when I have soya or dairy Oliver starts bringing up milk after feeds along with burps, etc and reflux symptoms.  I would concentrate on dairy/soya free for a while as it seems to be helping (which is great) - if\when they suggest more elimination I would worry about that then ... it is tough being dairy/soya free so give yourself time to adjust to that. 

Is she getting OT by the time she has finished feeding - Oliver can only handle 1 hour before needing bed ...

p/s hugs!
L x Having a bw break from 1 Feb 2012 - if you want to get in touch please send me a pm.  I may not be here but you are all in my thoughts xxxx (probably be back some time)

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Offline Buntybear

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Re: wondering if an ED is a good way to go....
« Reply #2 on: May 22, 2011, 20:54:11 pm »
Hi, so her symptoms are reflux (even though on meds), pain/crying whilst feeding and the odd mucous poo? Have you asked over in CRC about the reflux meds that she is on? If they aren't right then that could be the cause of the problems during feeding? Sorry have no experience with reflux.

Not sure where to start with an ED for you! Maybe keep a food diary for a week or so and see if there are any culprits that stand out? Thinking wheat, eggs, high sal foods....

When you have decided what to eliminate I would suggest research it (ie find out where it can be hidden, other names it can be called..) and alternaitves you can eat so you are fullyprepared. I went in half heartedly with wheat and eggs for months until he had tests at 12 months and then was strict with it. Kicking myself now of course.

Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #3 on: May 23, 2011, 03:17:24 am »
we've been dairy/soy free for over 6 weeks now and she no longer has blood in her stools.  It really is the reflux issue and the oddly/random mucous poop.  I'm all over the reflux board with questions there, and her ped is working with a GI specialist to get us an appt there because she feels like the meds ought to be doing the job and they just aren't.  Her ped doesn't think it's an allergy/intolerance, and I'm not sure it is either, I'm just trying to be prepared in case the GI thinks otherwise.  I really don't want to have to be more restrictive than I am at the moment, but I also don't want to be eating something that's causing her more distress.  I did start a food diary yesterday so when/if she has another mucousy diaper or a bad reflux day, I can see if there's a food connection.  Maybe that will be enough :)
Michelle




Offline Buntybear

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Re: wondering if an ED is a good way to go....
« Reply #4 on: May 23, 2011, 06:15:14 am »
Hi at least the diary will give you are a starting point otherwise what do you take out? Everything? Too much!

Offline *Liz*

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Re: wondering if an ED is a good way to go....
« Reply #5 on: May 23, 2011, 07:01:53 am »
The next step would be gluten wrt reflux rather than blood or mucous. Response to that is much faster - 3-5 days - so it is appropriate for a 'quick trial to see'

Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #6 on: May 23, 2011, 18:18:05 pm »
with gluten though...I have bread every day with gluten in it, so wouldn't I see more mucousy poops?  I guess I'm just hoping that "if" it's an allergy it's something I don't eat often because the likely candidates (wheat, eggs, peanuts) are things I eat every day, yet she doesn't have a mucousy poop every day - or is that just wishful thinking?
Michelle




Offline Rachel_Momto3boys

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Re: wondering if an ED is a good way to go....
« Reply #7 on: May 24, 2011, 03:31:20 am »
My LO has multiple food protein intolerances  I originally only eliminated dairy and soy and his symptoms improved (reflux, ezcema, mucuosy bloody stools) but it wasn't until I went on a total elimination diet (TED) and we were able to determine that he also has problems with eggs and tomatoes.  I don't think I would have ever figured out tomatoes without being on an elimination diet!  You could just try it and see, if you're able to do it there's really no harm in it.  I'm BFing and have been avoiding dairy,soy, egg, tomatoes, and nuts for 7 months and my LO is doing great!
Rachel
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Decemberboy04 - former reflux baby
Augustboy10 - MSPI Baby - EBF w/elimination diet

Offline *Liz*

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Re: wondering if an ED is a good way to go....
« Reply #8 on: May 24, 2011, 05:09:40 am »
But she has reflux everyday - and so anything may be the cause if it is food intolerance driven reflux.

Mucus from time to time is essentially normal remember. I'm not sure it is worth an ED for irregular mucus - more worthwhile to see if you can improve the reflux iyswim??

Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #9 on: May 25, 2011, 00:10:51 am »
how would I know if it's food driven reflux - is the only way to do an ED?  We finally got our specialist appt for 6/7, should I just wait to see what he suggests?  Part of me feels like I'm just being selfish in not wanting to do an ED, but then part of me feels like I should see if we can get her meds settled in to treat the reflux first and then go from there if it's still not working.
Michelle




Offline *Liz*

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Re: wondering if an ED is a good way to go....
« Reply #10 on: May 25, 2011, 06:07:29 am »
I think it is perfectly reasonable to have a limit on how far you are prepared to go with the diet. I certainly did - in the end I decided dairy, soy and gluten but no more - whether that mean ongoing symptoms or not. And after that I decided that I either lived with knowing Megan still had some symptoms as I was still BFIng her, or I decided that she was too uncomfortable and I needed to go to HAF. I chose to continue to BF - and that in turn meant I accepted some poor sleep and mainly NWings. While I was so sleep deprived and looking after 2 children I didn't feel I could take on a full ED. For me it was a case of being fair to myself and the whole family.

I don't think it is selfish - I think it is being honest and aware of your own limitations.

I think you need a lot of support for a full ED really - Eloise had family members making food for her to freeze and eat etc - plus a wonderful dietician - just to show how hard it is to get it right. And if you get hungry you will fail your ED as instinct takes over and makes you eat.

I would wait for your GI appointment since it is so close - but perhaps try and decide how far you want to go with EDs etc first. That in itself will make your consult most useful iyswim??

If you really want to try something else before then I would do 5 days off gluten and watch the reflux.

Yes - if the reflux is food intolerance based you need to remove the offering food item - and that means either a full ED or a bit more trial and error with the bigger suspects.
« Last Edit: May 25, 2011, 19:08:13 pm by *Liz* »

Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #11 on: May 25, 2011, 18:20:33 pm »
thanks Liz - that's actually super helpful :) 
Michelle




Offline EloysH

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Re: wondering if an ED is a good way to go....
« Reply #12 on: May 27, 2011, 01:47:45 am »
Hi Michelle,

After your reading you thread i think you are on the right track,  I would not be treading lightly when it comes to ED's.   Dairy free and soy free is hard enough.  I would only be going for further food eliminations if the poos were constantly mucusy. 

Personally, I feel that if the reflux is food driven, then mucus nappies and additional food intolerance (lower gut) symptoms should still prevail along with the reflux symptoms.  THat is just based on my experience with Ds2.  If the poos are explosive or girgling or verty watery that can be a sign of gluten issues, but it sounds as if her poos are pretty good on the whole.

I was started dairy free soy free from birth.  Then went to wheat free at 3-4 weeks old based on his poos, he definantly had some major gut fermnetation issues and lactose overload going on with bubbling, watery, foreceful loose poos.  After being on that diet for a while we were still getting runs of a week or so of major mucus nappies with green in them, and his reflux would go off the charts during these episodes.  I knew that DH had suffered from allergies to tropical fruits as a child so I always had salicylate intolerance at the back of my mind.  Anyway he was bad enough that I decided to do the low chemical diet (RPAH diet) to try and rule our food intolerances to salicylates and anything else.   Once I got him on that diet it took 6 weeks or so for the poos to settle to perfect. I started working through food challenges, I found that he was ok with amines, but not salicylates.  He also was reacting to some preservatives and additives. The deitician advised me that if they start failing a few preservative and addtive challenges and are also alreadys sensitive to salicylates, you can start assuming senstivity to the untested foods/addtivies, as we had a sensitive LO on our hands! 

Anyway, I think the main issue with ED's is that is is very hard to exit from them.  You reach a point where they are good and reaction free, and you have  a fear of new foods.  It is extremely hard to introduce foods or do food challenges in a scientific manner with nothing else going on to throw out your results - teething, sickness, shots, introducing solids to them directly.  So I got into a limbo land with my diet and had to keep mine fairly strict so I could introduce more foods to him when he was starting solids.     You can only do one thing at a time and  you need extreme patience!  You need to wait for reactions to finish, and then 3 clear days.  In the end I only was able to eggs when he was about 8 months  old, yet he probably was able to tolerate them alot earlier, however I couldnt get round to the food challenge, it was lower down on the list.  So I probably suffered egg free for a good few months longer than i needed to.

So my advice would be if you ARE going to try cutting foods, start with one or two likely culprits like wheat as Liz suggested.
And I was  only able to stay on my diet so long because I had major help from my people coming to cook for my freezer  :P

Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #13 on: May 27, 2011, 18:21:37 pm »
thanks so much Eloise!!!  Everyone here is sooooooooooooo helpful :) :) :)  Her poops used to be very explosive, and she had to focus quite hard to get them out, almost like she was constipated, only the poops were not hard.  But now she can eat and poop at the same time and 95% of the time they are normal bf poops.  I am keeping a log of everything I eat and how she eats, sleeps, poops and spits up on those days, and I plan to bring that with me to the GI appt and see what he says.  If he thinks it's a good idea to do a trial of some foods, I'll start with gluten, then I think I'll do eggs if the gluten doesn't make any difference.  Beyond that, other things I eat a lot of are tomatoes and onions, so I guess they could be next on the list. 

It is feeling a bit more manageable to do things this way and wait and see how the meds help.  I don't have family around, and I do have friends who have brought meals, but they're having a hard time with doing dairy/soy free, so there's no way I'd throw more at them.  It's good to know I dont' necessarily need to do a full on ED at this point.  I am amazed at all you wonderful ladies who have done it!!
Michelle




Offline Buntybear

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Re: wondering if an ED is a good way to go....
« Reply #14 on: May 29, 2011, 19:38:43 pm »
Hi, I didn't have family around and had to do it on my own. You just get on and do it when it is for the good of your precious LOs heh?