BabyWhispererForums.com
EAT => Food Allergies => Topic started by: lizzyr on June 15, 2010, 08:47:11 am
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It has come to the point where I am having to consider switching to Neocate. I have breastfed my LO for 6.5 months. He has had problems with reflux type symptoms since birth (much improved by a dairy/soy free diet), and mucus poo/cramping/crying for 4 months.
To enable me to continue breastfeeding I have now cut out: Dairy, Soy, Gluten, eggs, all meat exept lamb and turkey, fish, citrus, tomatoes, mustard, nuts, seeds... the list goes on, for nearly 5 weeks.Prior to this I only cut dairy and soy, which did improve things, but not completely. Basically I eat only from a list of the least allergic foods. I cook all my meals from scratch with absolutely no additives/processed food. Basically turkey, rice, vegetables and fruit, sunflower oil, olive oil.
We still have problems. Still mucus in every poo, and the last few days his poos have increaased again, they had settled to 1 a day, now up to 5 mucus poos a day. Crying has started again. I don't know what else to cut out.
I just want to hear from people who did switch from BF to Neocate - your stories, good or bad. Every time I think about stopping it brings me to tears, but I know I also need to do what's best for him. It all feels so unfair.
Thanks in advance, reading posts on this site had been such a help anyway so far.
A
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just sending you some hugs, wow you are an amazing Mum to go through all of that for your little bubba! You breastfed for so long like that, my hat off to you!
I am bf'ing on a strict elimination diet but it is no way that restrictive. I really understand how difficult it is. Just to double check are you sure you've cut out all hidden dairy and soy? Also what about amines - chocolate, bananas are two that come to mind? I have found problems with dark chocolate and others have also found so on this site.
If citrus is a problem is that die to acid or salicylates? Because I think there are other high salicyalte foods out there that aren't necessarily citrusy. Like grapes and avocado.
My sons is 12 weeks and poos are looking good, this is what I have had to cut out if it helps: -
tomato, chilli, spices, alcohol, caffeine
dairy and soy (but not all hiddden stuff)
gluten
windy foods: cabbage/onion family
Low chemical and additive where possible
no MSG or other glutamates
trialling citrus this week
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Thanks for that, it makes such a differance just to be talking to someone who understands about this.
I have definately now cut all hidden dairy/soy (was definately eating hidden soy for the first few months eg hydrolysed vegetable protien in our boullion, veg oil, soy flour in bread).
TBH I don't know if citrus/tomatoes/fish/nuts etc etc IS a problem. The only ones we know for SURE are dairy/soy/beef. I chose to go the complete allergen elimination route to try and give as good a baseline for introducing solids as I could, without using the Neocate. ie I would know there were pretty much definately nothing in my diet that could possibly be antagonising him.
Regards chocolate - I did cut this out also as he reacted when I treated myself to a dairy free chocolate slice when he was about 3 months old. None since then.
I really am only eating plain, fresh meat, veg and fruit and sunflower/olive oil, rice and millet.
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Hi lizzyr,
Huge (((hugs)))). I SO know how overwhelming, frustrating, upsetting this is. My younger daughter, Gwynnie, had severe allergies and I cut out everything, except for 5 foods. I thought I would lose my mind when she was STILL having mucous in her stools (although there were HUGE HUGE improvements, I still didn't know what was still bothering her). We finally got actual skin patch testing done (it's more accurate for GI type intolerances) and found out oatmeal was one, and I was eating tons of oatmeal thinking it was safe and to keep my supply up. I took that out and everything finally cleared up. But it was a long road for sure.
You have done an AMAZING job BF'ing your LO thus far. Really incredible, you should feel proud and your LO is so fortunate. Do NOT feel guilty at all if you have to go to Neocate. You need to do what is best for your LO AND what is best for you.
If you have a chance, check out this site: www.kidswithfoodallergies.com It's fantastic, a wealth of information. It was a lifesaver for me.
Big (((Hugs)))). :-* :-* :-*
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dont have advice unfortunately but dropping off some super big hugs for you.
i'm currently Q'ing the same thing and i havent cut out as much as you yet (i've cut all dairy and soy, wheat and gluten, eggs, peanuts and now tree nuts and i'm at a loss as to what else to cut out too as i still feel something is not quite right. tho interestingly after reading eloys's post, i am eating loads of bananas and avocadoes, they've been my staple foods and i would prob eat one of each every day! i'm also still eating beef so maybe i need to cut that out too). i'm planning on making it to 6mths and then assessing how i feel but i get teary whenever i think about it just like you, ds1 i started switching to bottles at 4mths and was done bf by 5mths as he had bfing aversions due to late diagnosed reflux and was just happier on bottles. i was kinda hoping it would all be fine this time around, and you're right it just is not fair! sorry to let it all out in your post but as you said it is nice to be able to talk to someone who understands. friends and family have been telling me to switch to formula since he got diagnosed mspi, thank god dh is supportive.
you've done a fabulous job bfing this long! be very very proud of the amazing efforts you have made to get this far no matter what decision you make from here :-*
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Thanks for all your replies. Huntersmummy I know how you feel, sometime I think that my family think sticking with the breastfeeding is wrong, but I don't want to stop, switch to Neocate only to find things don't improve - I don;t want my supply to dry up, and I know pumping just isn't the same when it comes to keeping up supply.
I am begining to think we are barking up the wrong tree a little here also. Finns reactions when I eat dairy/soy are SEVERE - I mean 5 days of colic screaming. But maybe it IS just milk/soy, and the reflux symptoms are not linked to to the intollereance (ie getting rid of soy/dairy will not get rid of the reflux). Maybe we need to treat things as 2 seperate issues. I just didn't want to medicate uneccisarily, you know, I wanted to treat the cause of the reflux, not just the symptoms...
It is all so confusing when there are different symptoms, such as the mucous as well. Could the extra saliva he is producing due to the reflux irritating his gut and causing the mucus???
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Lizzy have you put him on a baby probiotic? Maybe its just that his gut needs a boost so it can heal. Perhaps time isn't enough to heal the gut.
Maybe worth seeing an immunologist to get some formal intolerance testing done? Is he medicated for reflux?
Hang on, you said you are eating fruit? What about salicylate intolerance? Stone fruit/citrus/berries. I am not sure of the effect on the gut i.e for prodcuing mucuous but it's are more common food intolerance than you think. The RPA elimination diet is low salicylate and low amines and glutamates also. Have you consdered these? Let me find a link: http://www.sswahs.nsw.gov.au/rpa/allergy/
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Thanks so much EloysH. Funnily enough I was using Solgar probiotic for about 6 weeks, UNTIL I started the TED 4 weeks ago, as I was paranoid that it itself could have something that could be aggravating his intestine!!! But am starting again. For the 4 weeks of TED the only fruit I ate was apples, pear, apricot and date (all low allergy according to Dr Sears website).
I am wondering if his gut does just need more time BUT also he is teething (although he has looked like he has been teething for about 3 months, however we can see 2 teeth nearly through now) and this seems to have flared up his reflux symptoms. He has been poorly this week, temperature all day 5 days ago and the same last night. He was up every 20 mins last night crying, gulping, wind and temperature.
Could all the excess saliva / stomach acid affect his bowels and made them more loose and mucousy???
Huntersmummy, how are things with you?
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ds1 had bad reflux, medicated til 2yo but ALWAYS got way worse when teething so that could be making things worse for him. dont know that that would cause mucousy poos tho, loose ones yes but prob not mucousy ???
tearing my hair out here. off to gp again on tues as ds2 is spitting up bucketfuls after each feed atm, as bad as he was on cow's and soy milk challenges. he has a rash again too and i stupidly ate calamari last night, when i ate prawns once he got a bad rash too. but the spit up has been going on for at least 2 weeks now. he is barely pooing tho, which i find weird if it is an intolerance i'd would've thought he'd be going heaps ???
does sound like your little guy may have reflux as well as mspi tho. i know with ds2 i thought the refluxing would disappear with a restricted diet but no, he def still has flare ups that are just reflux related too. would you consider a trial of reflux medication to see if that helps things? might enable you to bf longer if you were wanting too if it helps settle things?
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Lizzy, I'm not sure about that theory. Common sense makes me think no - I thought the mucuous needs to be related to food intolerance or gut bacteria imbalance. I couldn't think that saliva, something the body makes would cause harm to the digestive tract. But I am no doctor!!
Reflux is usually worse with teething.
Both apricots and dates are high and very high in salicylates. They might be low allergy foods, but I guess not intolerance foods :P I am not sure how LO's poos would look if they were intolerant to salicylates, but I am pretty sure that LO would havea sore tummy at least.
The link below is a diet developed by a leading hospital in my city's allergy unti that help people discover the whether they have food intolerances. The diet contains no allergy or food intolerance foods. The diet is more than just low salicylates. Without knowing the Doctors Sears diet, this one takes into account amines, sulphides, salicylates and glutamate intolerances, as well as the usual fish, eggs, dairy, nuts & gluten. If the apricots and dates were dried, they could possibly also contain sulphides (need to check the drying process) they are a cause of food intolerance.
Kirry: it must the the lack of the domperidone then?
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here's the link elo was talking about http://www.sswahs.nsw.gov.au/rpa/allergy/
elo, i think it is food related. dh gave him a bottle of neocate this afternoon while i was out (we wanted to check he still tolerates the taste during the day). he downed a 180mL bottle :o and didnt spit up once which is making me seriously consider bfing :(
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oh no Kirry! That's getting interesting too though. Gosh I wonder if any of those other food groups mentioned on the RPAH allergy unit elimination diet could cause the spit up - i.e. the salicylates, amines, glutamates, additivies, preservatives?
I know that the sals can cause sore tummy, hmmmm might be worth checking the Fed Up Food network and asking around there about effects of these groups on babies, there is a support group: - http://www.fedupwithfoodadditives.info/
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We had to stop bf'ing for about 3 weeks when my dd had a really severe reaction and needed to be hospitalized. She was given Elecare through an ng tube (same as neocate, just another brand). Her stools were horrible though. They say it's almost impossible to react to it, but there was MASSIVE amounts of mucus and it didn't go away. They say that mucus may increase for a while, but that stools should adjust, but she still gets horrid poos if I give her too much elecare (she currently gets it as a supplement)
one thing you might want to consider if you want to continue bf'ing is to go to an allergist and do patch testing. My dd has something called FPIES - similar to just the milk/soy stuff, but include many other foods - the reactions are very distinct and severe and require hospitalization. Some of the biggest triggers for FPIES are rice or other grains. My dd also has severe reactions to squash and sweet potato.
My point is - you may get a better idea is she reacts to any other, less common foods, if you do some patch testing. It's not as accurate as some testing, but is the best method to determine which foods may trigger delayed-reaction type symptoms, like gastro stuff. If you don't know what is done, several food samples (purees) are placed on a little disc and taped to the skin to remain for 48 hours. They are then removed and 'read' by the allergist. It might be worth your while to make sure rice or other things are not causing something like FPIES reaction.
Is your lo eating solids at all?
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Hang in there! It can be tough deciding what is best for your LO, but it sounds like you're doing everything you can. No matter what you end up deciding he is a lucky boy to have mom who cares about him so much! JFYI if you do switch to Neocate, you may see an increase in mucous at first like the other moms mentioned. This is because his gut will still be healing itself. After a couple of weeks any allergens should be out of his system and you should start to see improvement. If not, then you may need to check in with your doc to see if it could be something else causing his symtpoms. Good luck and keep us posted!
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Maggie, why would she get more mucus if Elcare is anti -allergic formula?
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Maggie, why would she get more mucus if Elcare is anti -allergic formula?
My lo doesn't have a true allergy and is 'allergic' (sensitive is a better word) to less common foods. Don't know is she truly reacts to the formula or if it is a normal thing, like others have mentioned. We still use it when necessary because there is no other choice, and she doesn't have the really severe reactions requiring hospitalization like she does with some foods.
More mucus is common when switching to elemental formulas, we just thought she had WAY too much. Not to be gross or give TMI, but it was like 1/2 cup of pure mucus with each diaper!
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maggie, elecare has corn syrup solids and also has some soy oil in it. any chance it could be either of those she isnt tolerating? i'd be rather concerned about that much mucous too :-\
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maggie, elecare has corn syrup solids and also has some soy oil in it. any chance it could be either of those she isnt tolerating? i'd be rather concerned about that much mucous too :-\
well, from my understanding, those things should not present a problem due to the fact that the proteins are broken down into their individual amino acids - so like if you have a soy protein sensitivity, you should be able to tolerate it.
BUT;), my mommy instincts tell me the same thing - so I only give it to her if I notice her not gaining weight. Again, it'd be different if she was delayed in any way, or showing other signs of problems, but she seems very very healthy in every other way.
Not to mention the fact that corn syrup solids is the first ingredient and the carbohydrate source - it's not the same as high fructose corn syrup, but gosh - it certainly doesn't sound very healthy! As long as I'm still making what seems to be enough breast milk, I will continue to use that instead (and I had to FIGHT for this - I should link to my original post when all the crap started goin' down and we realized there was a problem... - actually, maybe I'll just update it anyway and I don't have to talk about myself so much on somebody else's thread!! lol!!!)
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Have realised that Finn has had a bug, which hasn't helped matters (developed into ear infection in both ears) - his reflux returned with a vengence and he was barely feeding. He seems better now, but my supply has dropped MASSIVELY. I am now ill and have been in bed for 2 days with flu/diahorea. I am doing what I can to get it back up, nursing frequently, upping my fluids. I am concerned that I'm not getting the calories I need.
Mucus still there... I am paranoid that he will react to the Neocate if I switch completely as it contains sunflower oil. When I used a sunflower oil on him for baby massage he got patches of excema (could have just been coincidence but...). It's a struggle to stay rationale at the moment and not be engulfed by it all.
Maggie2 - feel free to hop on the thread - it's all relevant stuff!!!
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oh - big hugs for you, lizzyr :'( It is so hard when your lo is sick, but then to get sick yourself, and THEN to be a bf'ing mom and get sick, and THEN to be a sick bf'ing mom of a baby with food issues :-[ {{{hugs}}}
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huge hugs hun, hope you are all feeling better :-* let me know if you want anymore tips for upping your supply (i had to do a lot when we discovered ds2 was cow's milk intolerant as he was already on two formula bottles that i had to drop cold turkey). thinking of you.
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oh lizzy that sounds tough! Sending loads of hugs. I guess a quick trial of neocate for one feed a day for 5 days when your supply is up would be worth doing, holding everything else in your diet constant?
The onyl thing is how would you know if there is a reaction as mucus is already in his poo. Maybe "more" mucus will come.
Have you considered sending him to an allergist for scratch testing?
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Yes, finally we have been booked to see an allergist. We are now awaiting a letter. Makes me laugh tho', as I asked to see a dietician for help with my diet and I got an appointment by letter a couple of weeks ago...for the 4th September!!! How helpful!
I'm tempted just to go back to dairy and soy free only as the mucus is still there, what's the difference? I wish this wasn't co-inciding with me wanting to wean him (he's now nearly 7 months...). More time would help to avoid confusion between my diet and his IYSWIM.
Hope you guys are all ok and enjoying the sunshine. Still in bed here - and my guts are worse then Finn's! (TMI I know!).
Take care - thanks for all the support, it does help so much.
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I would probably consider doing the same, have a little holiday from the diet for a few weeks just to get some sanity back.
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Okay - I just want to add my experience here - while we were in the hospital, the doctors wanted me to stop bf'ing and just to go on elecare for a trial, to see if things improved. At the time, my lo was not really having chronic issues like yours - it was more acute episodes - I will link to my post for you - it was such drama. I really didn't want to stop because our problems had been caused by solids - but I think it was the usual protocol they were pushing on me because she was really small (but not having any delays or illness or anything). Anyway, it might be helpful for you, even though it really wasn't for me! lol! After much back and forth, I finally found that the doctors normally recommend stopping bf's completely, but really all that is necessary is a trial period in many cases.
If you do a 2 week trial on neocate, you can observe his stools/behavior to look for any changes. You can pump to maintain your supply and if your lo is still having issues after the two weeks, you essentially know that it's not specific foods, but rather something else going on, like maybe malabsorption stuff. You can then breastfeed again. I will say, though, tat I hate pumping and don't respond well to it, but we were able to do it. She had a little trouble latching back on afterwards though.
Anyway - here's my experience: http://babywhispererforums.com/index.php?topic=165003.0
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Big ((((Hugs))))) Lizzyr. Honestly, if you feel comfortable going to soy/dairy free only, you should (and hell, throw in a glass of wine! I'll never forget when my DH came home with organic red wine for me one night - I said I no way, he was crazy, and he said "no, you NEED to, for you AND Gwynnie" ,lol - I had half a glass and was in heaven, and she tolerated it, very happy day!! ;D ). You have SO much going on, so many unknowns, and it can really drive you crazy. Get some add'l nourishment, move forward and see what happens at the allergist. I can 't remember if I shared with you - but I was literally only eating 5 foods for many months, one of them oatmeal (to keep my supply up), and I was getting really obsessive about everything food related. Well, DD STILL had mucous in her stools at time - I thought I would lose my mind. What else could I eliminate? I thought I would have to be on air and water only in order to help her! Turned out she was allergic to - oatmeal! - and I never would have guessed. I guess what I'm saying is, there is only so much we can do on our part - doing our best, looking into things on our own, going with our gut, and working with the dr's will yield results. In the interim - take care of YOURSELF. You're doing a phenomenal job and everything will balance out (hopefully) soon. (((hugs))).
Maggie. WOW! I just read your thread you posted above. I can't believe the ordeal you've been through. What an amazing, frustrating, incredible journey. SO SO happy to hear it all worked out and Collette (that's my confirmation name by the way - lovely!), is nursing and things are going so well. You are a strong strong mama. :-* :-* I hope things continue to go great.