EDs and Mucous poo

[~Jen~]

Thank you!  Really appreciate any contacts or dieticians locally that might be able to help.

Well we are on Day 3 of the Neocate trial.  Not seeing much of any change.  She has only done one poo so far and it was still mucousy although I guess to be expected with only a few days?  I don't see a change in temperament and she has been refluxing quite bad in the morning and before bed.  One thing I have been thinking about is connecting her PPI med with the potential sensitivity to Sals.  IF she does have a sensitivity to Sals, the Prevacid we are taking contains Aspartame which is something we should be avoiding.  Could that be why her symptoms seem to peak right after we give it to her?  When I start the ED should I be taking her off the reflux meds to see when get to a baseline? Or can I just go by the nappies?  Do you think I should switch back to Zantac if she is potentially reacting to the Prevacid?

Sorry for all the questions, I am just on such a steep learning curve. Been spending all my time, reading up on the diet. Also, just ordered the Friendly Food book so I can get started.  I also have been thinking about DS's reaction to some solids we tried him on.  He would get HORRIBLE burning nappy rash (bloody and blisters) and I never could quite figure out what he was reacting to.  I cut most dairy out and then I also saw a connection with fruit - i.e. blueberries, strawberries and some citrus fruits./ All just based on trial and error with no systematic approach to it.  He doesn't really have other symptoms though.  I am wondering if it is all somehow tied to a slight sal sensitivity for him too? 

[EloysH]

No worries!

I am really not sure about Aspartame - I will have to ask my failsafe friends.  However I know it is likely that you will be in trouble  if the reflux meds are stopped.  The reflux needs to be under control as much as possible, it is possible that all her symptoms are entirely food intolerance based but it is also very likely that she has plain old mechanical reflux and no amount of diet will fix that. For us, that was the case, K has both mechanical reflux and food intolerances, he needed his PPI to get rid of the acid so he had no pain in the throat, and the diet to ensure he had no pain in the tummy and abdomen    

 If you were to take her off the meds and her reflux pain was uncontrolled, then even if you reach a baseline of good poos and no wind, gas etc, she could still have considerable reflux pain and be very very unsettled.  We need to attack this from both angles to get a good result.

K is on Losec which is omeprazole made up as a compounded suspension with no flavouring, so I have not come across and sals issues in the meds.

Well,  would say a burnt bottom is a pretty strong reaction - if it is sals.  We never had burnt bottoms here, but it is common the sals act as a strong acid in the body. The theory is that these LO's don't have the enzymes required to metabolise the chemcails properly so it builds up in the body in toxic amounts and then the liver isn't able to excrete it fast enoguh. You are onto something with the berries.

You'll need to get the Elimination diet handbook to get started too. It can be bought from here:
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.cfm

I can get it for you if you have any troubles.

Dieticians: an email link:
http://www.fedupwithfoodadditives.info/factsheets/Factstart.htm

This page has a UK email group you can subscribe to, they might be able to find you a dietician:
http://www.fedupwithfoodadditives.info/factsheets/Factintroduction.htm

I can also ask my dieticina if they are willing to o'seas consults.  They do phone consults already... but they usually ask that you see the paediatric allergist in their practice first... but worth a shot, just let me know.

as for the neocate trial,  poos will have a long lag effect, so a better judge would be to look at any other symptoms whist she is on the neocate, poos can take many weeks to clear as it takes time for irritation of the gut to settle. 

I am going to split this thread now, so you can have two...

[~Jen~]

If you do come across anything Aspartame I would definitely be curious. The Prevacid is strawberry flavour and I think (although really have no basis for my thinking) is the aspartame is a sweetner which might be linked to the flavouring of the tablet. There seems to be so much info out there about EDs and sensitivities to Sals so I'm not sure what is accurate and what is not. But I do think I came across something explaining that Aspartame is meant to be avoided due to high Sals. 

I do agree with you and appreciate you helping me think through the importance of keeping reflux under control.  Lately I feel like a dog chasing its tail!  Round and round we go.  They both seem so closely linked - you really have to attack from both sides.  I do think she has both mechanical reflux and the food intolerance issues.  So I think I will keep her on PPI for now while we finish the Neocate trial and figure out the next steps. At least that part of the equation is being addressed and I can focus on diet for now. 

Thank you for offering to help with the handbook. I actually sent an order form over the weekend from the website - but it says 2-3 weeks!    So i will just work off the website and the support groups for now.  I also ordered the Friendly food book from amazon in the Uk.  We won't finish the Neocate trial for another several days so I guess that gives me a little time as well.   If any of the dieticians are willing to do an o'seas consult that would be great - I think it is going to be hard to find one here with as much experience.  I'm sure I can get started but it is clear that having further support from dietician is really important. 

As far as the poos go, that is where I am still really confused.  Our paed "encouraged" me to do this trial and wants to see if there is any improvement in a week.  he seems really focused on the poos - but there won't be much change in a week. He ultimately wants to decide whether she needs to go to a GI specialist.  My instinct is diet will fix this ultimately but I will see what he recommends. So what would be the other symptoms I should be looking at?  We are on Day 4 of Neocate and so far and she is definitely sleeping better  so that is a good sign.  But also still squirming just as much when I try and settle her for bedtime and naps.  It is almost like she is so restless she just can't calm herself down even in my arms when I hold her.  She relaxs then jolts and squirms, relaxes, jolts, squirms over and over. It is physically exhausting for me nevermind her! It is different then just OT restless though - I had that with DS and this is very different.  It seems like something is really hurting her.  She still exhibits the reflux symptoms early morning (around 6am) and going to bed (around 7-8pm) - I don't think her reflux is totally under control yet despite PPI but it is MUCH better than before meds.  What other symptoms do you think I should I be looking at?   

And one last thing (sorry!) I think you mentioned you ate sweet potatoes on the ED.  Are they mod sals? Do you think it is ok for me to continue eating them? They've always been a staple food for me and while giving everything else up I think it would be tough to cut them out.

[EloysH]

I have asked my local failsafe forum about aspartame, they are a pretty knowledgeable bunch, some have been on the diet for years.

Will get back to you on poops thoughts.

Dieticians recommend a moderate chemical diet for breastfeeders. So go for the sweet potato.  It may take longer to reach baseline that way but will allow your sanity to be intact. I had to be careful to limit my moderates to one cup a day in the early days. Once he reached baseline for a few months, I was able to moderates liberally.
 

[~*~Louisa~*~]

My middle daughter got burns on her bum from poop from too much dairy and sals when we eliminated dairy sals still caused it and now even half a teaspoon of ketchup causes burning poo (which if she leaks out of the nappy will burn legs or any other skin it touches)

Alyssa has had the same from again large amounts of dairy and again sals Zantac caused the last burnt bottom we had here

I dont know much about sals only what Eloise has really helped me with but the burnt bums we have had before

[~Jen~]

Hi Louisa, That is really interesting.  It is all starting to come together now that I am learning more about sals.  I can't tell you how much time I spent trying to connect the foods and the burnt bums.  It drove all of us crazy.  I wish I knew about sals a year ago!  He doesn't seem to be super sensitive to them but if he has a bunch of dairy or alot of fruit, we get a burnt bum.  This makes me think I'm heading in the right direction with an ED for DD.   She just seems to be much more sensitive to it.  I'm learning too and thankfully Eloise has been a fantastic resource.

Eloise, thanks for asking the forum for me.  And soooo glad to hear the sweet potatoes can stay.  I'm trying to work out how do buy our meats for the week as it is not always feasible to get out to the shop during the day. If I buy a few cuts from the butcher and then freeze them when I get home, can I then just defrost as needed? I guess same thing with cooking in bulk, freeze and then just pull out from freezer as and when needed? This is going to be a big lifestyle change for me but thankfully DH supportive and we want to try to make it work.

At the end of Day 4 with Neocate, I have to say I saw a BIG improvement in her today.  She just seems so much more comfortable and easy to settle for sleep.  Much less squirmy and she even made it through 45mins for a few naps which NEVER happens!  HOpefully we see continued improvement and at end of the week our paed agrees it is a diet issue.

[~*~Louisa~*~]

I know I feel the same way about DD#2 my dietion even put bad poo down to "toddler poo" and then Eloise posted about someones face being down to sals which looked exactly like dd's and we cut them right down and bam 4 months of bad poo cleared up in weeks! though a flair up when we gave her a burger when out and forgot to say no ketchup (slapping myself the next day)

god bless Eloise lol

[EloysH]

Louisa, you make me laugh     Wow that;s pretty amazing about the small amount of  ketchup burning her bottom, I certinaly believe it though!

Jen,  sooo glad that she's getting better and her poops are getting better.  I was going to say look for less squirming, improvement in the frequency of refluxing, hiccups, wet burps, sleeping more soundly with less waking, less wind, shorter NW'ings, less fussing after a feed, and any improvement on the mucus side of things.

The meats was the hardest part for me to get used to. I was sooo glad when he passed the maine challenge and I could let up on all the resrictions with meat and cooking!  Although I am now quite fussy with meat and won't buy vacuum sealed anymore, I also freeze my meat straight away and won't let it sit in firdge thawed for more than a day, I don't think there is any good reason to load up on amines uncessarily.

Bascially, when buy your meat, ask the butcher is " was this cut from the carcass today?"   If yes, ok.  Then ask "have the carcasses been hanging less than 2 weeks" if yes that's ok too.  If it is a steak make sure to ask " is this meat aged"  if it is aged less than 2 weeks that's ok.  But once it is cut of the main carcass, it must be bought that day and frizen straight away.  Once you thaw, you must eat it that day.  Only thaw in the fridge.    You will get used to thawing your meats for that nights dinner in the morning, and your freezer will always be full! 

The other thing to do - and it saves alot of time is too cook your meals - for example make a whole lot of meat patties, cook them  then freeze sraight away.  Thaw a meals wirth and gently reheat on the pan for a meal.  I eat alot of mince pattties combo chicken & veal with diced leek, celery, carrot, (or any veges for that matter) lentils, cooked rice /quinoa mixed through.  They hold together really well when frozen and thawed, and even cooked then frozen, re heat nicely on the pan.  You can get away qwith frying things if they are coated in rice crumbs, then the meat won't be high in amines, as the crumb is getting browned, not the meat.

You can also gently roast your meats in the oven.  If it gets too brown, just don't eat the edges.

  CAN you PM me your email address, I can send you a 10 page recipe book downloaded from the FED UP food intolerance network as well as some other bits and bobs, I have a food challenge protocol - if or when you get to it.

[~*~Louisa~*~]

Tomatos have always been the worse thing ever for her so i think cutting them made the tiny bit like 100% worse I looked through that link you posted and ketchup was 2.68 i think it was where everything else was under 0.50!

[~Jen~]

I was going to ask you if she does have a sensitivity to sals will the symptoms be similar to the traditional food intol like dairy/soy etc.  She has so many textbook symptoms and despite cutting out dairy/soy/wheat/nuts/eggs, things weren't really improving.  When I go back to EBF, do you think the sals sensitivity could be the piece I was missing? Would a sensititivity to sals present symptoms like dairy/soy intols?  One of the symptoms that seems to be worse this week is her nose rubbing/congestion.  She can hardly breathe and that, more than the squirming, seems to be upsetting her sleep at the moment.  Is that another food intol symptom?

Thank you so much for the tips on meat and preparation.  Ironically, we just bought a new freezer with extra space which will really come in handy now.    

[~Jen~]

Ugh, so I went to our local specialty butcher and asked about their meats and butcher told me that beef and lamb were all cut from carcasses 3 weeks prior!  I was sure this place would be the best place for me to go for our meats but doesn't seem like it will work. My only other choice is our supermarket butcher but I'm not holding my breathe on that one.  Now I'm not sure what to do about the whole amines/meat thing.     

I'm feeling really discouraged about the whole ED thing tonight. My mood is definitely being affected by eating so few foods. Hungry all day and I snapped at DS tonight which tells me that I'm pushing this a little too far. I felt awful afterwards.  I just find it hard to be so committed to something that is so challenging when I don't even know if it will solve DD;s problems. 

[~*~Louisa~*~]

The thing thats gotten me through my Elimination diets which have ended up sticking for the foreseeable future is the thought

I woud die for any of my children so cutting foods out well its nothing compaired to what i would do iykwim

[EloysH]

Annoying about the butcher! Do you guys eat alot of lamb?  Lamb is really safe for teh diet here, as they don't hang carcasses for long, they don't age them, usually after they are slaughtered they end up at the butchers within a week and are sold straight away.  Supermarket chicken is ok, if very fresh - check the dates for the freshest stuff.

The first 4 weeks on this ED are nothing but tough until you find some rhythm... it will all be very new and expect lots of mistakes.  I really couldn't get by without my Mum who has come once a week since the start to cook foods for my freezer.  I also had my Dad's partner cook things too at one point... and at another time I employed my neice one day a week to cook too!  I am just trying to stress here the burden of the cooking.

Yes you will be hungry at the start and really need to shop alot more often to keep fresh foods in the house.  Snacks are always a problem.

Going to neocate may save your sanity, and also your DH's!

I just joined to UK failsafe email group today and put a question out there about dieticians, lets see if anything comes back,  I think I put the link there for you below.

Haven't heard anything on the artificial sweetener yet, but its a synthetic chemical, a definate no no on the diet.  K reacts to addtivies and preservatives, I am sure he woudl react to that if it were in his meds.

It does sound like you havea good case for a salicylate senstivity but you would never know for sure until you go through proper food challenges after a baseline has been reached on the diet.

[bug_blues70]

following along...

[~Jen~]

Hi, Just a quick update after speaking with the UK based dietitian who is follows Failsafe.  Timing was perfect as things are hitting rock bottom for all of us.  She recommended taking Probiotics while continuing on the diet for hte next three weeks.  We talked through everything that has gone on with DD and she thinks that might be the missing piece of our puzzle especially because the mucous poos have not got better despite cutting so much out.  I'm starting tomorrow and again am hopeful but not getting my hopes up     

In my quest to find a baseline, I ate just chicken, rice (and various rice products) and pears for a few days.  while symptoms improved at first, they turned bad again. I added some low chemical fooods back in and after some serious pressure from DH tried 1 egg yesterday.  Sure enough she had a major reaction.  I'm really at the end of my rope. She is more squrimy, upset and unsettled than I've ever seen her.  I can only hope the probiotics will make some difference.  I'm so nervous because we are leaving for holiday in one week and I don't know how I'm going to keep such a restrictive diet while we are away