Author Topic: wondering if an ED is a good way to go....  (Read 3330 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 ...

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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!
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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?

Offline EloysH

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Re: wondering if an ED is a good way to go....
« Reply #15 on: May 30, 2011, 11:00:13 am »
Sounds like a plan  :)  One step at a time. 

Tomatoes are pretty high in food chemicals and also acid.  Onions are obviously windy as alot of sulphur is relased in the cooking process, and also high in natural food chemicals.  Both were to be strictly avoided on my diet.  I still can't bring myself to cook with  either tomatoes or onions (I use leeks) even though I have been off my ED for 5 weeks now!!!   I really understand how irrritating tomatoes can be to the body I will only eat fresh ones on bread or in a salad.

Offline Gypsymom

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Re: wondering if an ED is a good way to go....
« Reply #16 on: June 01, 2011, 17:31:17 pm »
Liz has some good advice about balancing it all out. I went full-on (down to just six foods for months! eek!) and the toll was heavy, much more than physically. DS2 is a super-responder (even minute quantities bother him and he struggles to put on weight if things are 'going through') so I am STILL on a very restricted diet, but it's 10x better than it was. Feel free to PM me if you'd like further help whittling things down, but these girls are all experts!  :-*


Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #17 on: June 02, 2011, 00:19:49 am »
dh and I have discussed how far we're willing to go and we've made a list of what I'm comfortable doing a trial elimination of (but probably just one at a time) if the GI specialist recommends it:  gluten, eggs, peanuts, tomatoes and onions are the top five we're looking at.  And I've got my food diary going, but so far we've not noticed a pattern between my eating and her screaming and pooping.
Michelle




Offline ~*Nicole*~

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Re: wondering if an ED is a good way to go....
« Reply #18 on: June 02, 2011, 01:01:30 am »
I am following along as I have a lot of the same questions. I have to commend you for how far you are willing to go with an ED if necessary. I said if dairy and soy weren't enough then I'd likely move to formula. I feel VERY guilty after reading through here and seeing how dedicated a lot of other moms have been in order to continue BFing.

That said, I'm eliminating dairy/soy now and a lot of what you are describing is still happening here. Random green mucousy poops, screaming/crying after about 10 minutes after feeding, etc. We are supposed to pop in to the ped tomorrow to have a nurse administer a vaccine and check his stool again but I may request to see the doctor and inquire about upping reflux meds or something else b/c we are still just plain miserable here.

I do eat eggs, tomatoes, wheat, onions, and possibly hidden dairy/soy in "natural flavors" b/c I don't know what they are if they refuse to list them on the ingredients list of foods I use. Now I am thinking about this whole reflux due to food allergy/intolerance thing and wondering if I need to limit more or just move to trying the formula.

I don't really know what I want to do so I am following along to see where you end up and how things go for you and your DD.







Offline EloysH

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Re: wondering if an ED is a good way to go....
« Reply #19 on: June 02, 2011, 01:43:41 am »
Feel free to PM me if you guys want to chat in detail  8)

Please dont feel guilty hun, I had the support at home with family and also surrounded by amazing health professionals, the diet I was on called th RPAH elimination diet was derived at Royal Prince Alfred Hospital, they are the world leaders in food intolerance research and they are literally 5 mins down the road from me.  So very lucky on that front  :P   I don't think the deit is really possible unless you have the right support.   It is so very hard  :(   But I did have a symptomfree baby no mucus, no wind, no sore tummy  :)

And I don't think one would be on that diet unless the circumstances prevailed, Kai really is very very sensitive, even now at 14 months I have had to take him off his measly one tablespoon of sheepmilk yoghurt since he was been doing too many poos and fluffs and waking for 2 hours at night uncomfortable. It was (was his only dairy left)  but at least he seems to be sleeping better.

Offline ~*Nicole*~

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Re: wondering if an ED is a good way to go....
« Reply #20 on: June 02, 2011, 12:01:28 pm »
Please dont feel guilty hun, I had the support at home with family and also surrounded by amazing health professionals, the diet I was on called th RPAH elimination diet was derived at Royal Prince Alfred Hospital, they are the world leaders in food intolerance research and they are literally 5 mins down the road from me.  So very lucky on that front  Tongue   I don't think the deit is really possible unless you have the right support.   It is so very hard  Sad

Thank you for this. It is really hard when you don't have help to shop/cook, etc. And everyone keeps offering me things I can't eat. I brought my own foods to a BBQ last Sunday and I had to explain to everyone why. It is such a foreign concept to most people.







Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #21 on: June 02, 2011, 12:39:17 pm »
I completely understand Nicole!!!  I had someone bring me a meal and I asked her if it had any dairy in it and she said "oh no, no milk, I just used cream of chicken soup"!  *sigh* I had a sandwich instead.

I'd check with your ped about a meds change - are you just doing zantac?  It's super weight sensitive, and it didn't work for us, so it's worth trying a meds change first.

There's no way I could do a total elimination diet, I just don't have enough help there, and I'd still be cooking regular stuff for dh and dd1.  But I think I can do one additional elimination at a time for 5 days and see.  If I know it's time limited, I can do it.  Now, if I find that 5 days of no gluten does the trick, the question will be can I keep that up, and at this point, I don't know.  I'm waiting to hear what our GI specialist says first though.

The down side to switching to formula is that if it's anatomical reflux, she'll be just as uncomfortable on formula as she will be on bm, so I don't gain anything there.  I don't know if it's worth it to do a trial of formula (while pumping to keep up supply) to see if it makes a difference, and if it doesn't then switch back to bfing.  Has anyone tried that?
Michelle




Offline ~*Nicole*~

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Re: wondering if an ED is a good way to go....
« Reply #22 on: June 02, 2011, 15:34:07 pm »
I was wondering the same Michelle...would it be worth it to trial alimentum maybe for a day or two while pumping to keep up supply to gauge if there is any improvement??







Offline deckchariot

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Re: wondering if an ED is a good way to go....
« Reply #23 on: June 02, 2011, 18:46:45 pm »
I'm going to ask the specialist on Tuesday and see.  I'm holding off on making any changes right now until after that appt when we have some more information.  I'd really hate to stop bfing her :(
Michelle




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Re: wondering if an ED is a good way to go....
« Reply #24 on: June 03, 2011, 01:45:44 am »
it is a standard recommendation at the allergy clinics.  She might have both anatomical relfux and food intolerances.  Kai definantly has both.

Offline Kta400

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Re: wondering if an ED is a good way to go....
« Reply #25 on: June 10, 2011, 00:02:14 am »
Hi ladies, I am in the same boat and it is so nice to read these posts. I have a 6 month old son who I think is dairy/soy intolerant. I was gluten, nut, dairy, and soy free for 6 weeks and finally was seeing no blood but his poos were not back to normal yet. Then I had a bad experience at a sushi place - they told me there was no soy in a sauce but my LO told me there was when I fed him and he had a massive explosive green poo with lots of blood within hours of feeding him. So now I have 4 weeks from that episode and still have a little blood here and there. Is it common for soy to take that long to get out of his system like it does dairy?  I have added a little wheat back in and so now not sure if we are reacting to the wheat or if it is still the soy getting out of his system. It is so confusing and hard!

I started a probiotic a week ago and just yesterday he started to be super gassy, up multiple times at night screaming, starting to spit up a ton, and more dots of blood. He has reflux and is on Zantac which has seemed to have worked up until now. I am so stressed out and am starting to feel so guilty to be still nursing if it is causing him this much pain. I can't figure it out!

I have been wondering too if I should try formula for a day or two but just nervous to add something new to his system. Plus... I really hate the idea of giving up nursing.

Going to the doctor tomorrow for his 6 month check up and am going to request to see a GI doc.
Katie

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Re: wondering if an ED is a good way to go....
« Reply #26 on: June 10, 2011, 02:37:46 am »
I was told it can take 4 weeks to get everything out of your system and his system.  {{{{{{{hugs}}}}}  I would have your dr test his poop again for blood.  Our dd no longer has blood in her poop, so the dairy/soy free is helping.  our GI specialist advised against doing a full on ED as he thinks it really is just the milk protein issue.  He suggested I quit bfing and go to formula, but I'm just not ready to do that yet.

zantac never worked for us, and I know it's super weight sensitive.  But the blood has me thinking allergy.
Michelle




Offline Kta400

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Re: wondering if an ED is a good way to go....
« Reply #27 on: June 10, 2011, 14:34:50 pm »
What did the GI do to conclude it was just dairy issue? Just by talking to you or did he run some tests? What formula did he recommend?

I am so worried the doc will tell me to quit breastfeeding and move to formula as well. I am so not ready for that. I was so upset last night because I just am not ready. I feel like that is being really selfish though... I really just want him to feel better.
Katie

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Re: wondering if an ED is a good way to go....
« Reply #28 on: June 10, 2011, 14:43:56 pm »
Here's a link to a thread I started on the whole issue: http://babywhispererforums.com/index.php?topic=211579.0

fwiw, at this point, we are not quitting bfing.....she's been doing better, and the benefits of continuing outweigh the benefits of quitting - at least at this stage.  If/when we do decide to do some formula, I'm just starting with one bottle - the bedtime one.  It's a really hard decision
Michelle




Offline ~*Nicole*~

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Re: wondering if an ED is a good way to go....
« Reply #29 on: June 10, 2011, 15:27:23 pm »
I started a probiotic a week ago and just yesterday he started to be super gassy, up multiple times at night screaming, starting to spit up a ton, and more dots of blood.

I am sure that you did, BUT just in case...did you check to see if the probiotic was dairy and soy free. I know I was looking around for one and had a hard time finding one that was both dairy and soy free and they were costly so I ended up not buying any :(. Just wanted to make sure that this wasn't the culprit for you.







Offline Kta400

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Re: wondering if an ED is a good way to go....
« Reply #30 on: June 10, 2011, 16:57:20 pm »
I did check and am using Klaire Labs which is dairy/soy free. I did just notice that the Vitamin D drops I give him have Natural Flavoring and wondering if that could be bothering him. He is so sensitive so I wouldn't be surprised if he reacts to the "possible dairy" ingredients.
Katie

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Re: wondering if an ED is a good way to go....
« Reply #31 on: June 10, 2011, 18:12:37 pm »
natural flavoring is often milk based, so if he's super sensitive, that could be the issue.
Michelle