Desperate for help - Breast milk Colitis - Mothering Forums
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#1 of 25 Old 06-27-2011, 05:40 AM - Thread Starter
 
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I've been advised to repost this here from the breastfeeding problems forum as someone kindly suggested people here might be ale to help me. 

 

Hello All,

 

I have lurked for quite a while on these forums and am hoping that someone can help me as I am nearing the point of stopping breastfeeding but desperately don't want to.

 

Apologies for the long post but wanted to give full background. My DD2 was diagnosed about 10 days ago with breast milk colitis. At around 10 weeks she began to have increased stool frequency and increased mucus (her poos always seemed a bit sticky since the first ones) then she had blood and we had a month of very bad poo with mucus, occasionally streaked with tiny flecks of blood in the mucus) and dark green stools with dark green flecks. The smell was very sulphur like too. After the first episode of blood flecks I gave up dairy (so around 10w 4days) and saw very little improvement after a couple of weeks, so essentially went on a total elimination diet at around 13 weeks).

 

At 14 weeks, we finally got to see a Ped Gastroenterologist (we're in London UK) who diagnosed breast milk colitis and immediately told me that the only thing I could do was put her on Neocate. I was reluctant to do that as I felt that her poo was slightly improving at that stage with the elimination diet (they had returned to a better more yellow color) and the smell was a little better and I really wanted to continue to breastfeed - my DD2 breastfeeds to sleep and I believe most of the time it's a comfort to her. He reluctantly said that he would refer me to a dietician the next day and let me continue for 2 weeks and then if there was still mucus and blood then I would have to stop feeding her. I was also given antihistamines for her to take 2x a day.

 

I went to the dietician who was more supportive, but told me to avoid Milk, Egg, Wheat & Soya as my diet was too restricted and unsustainable. These would be the likely causes of the allergy and that I should introduce more foods into my diet (at that time I was restricting myself to rice, ricemilk, a couple of types of meat, potato, banana, plums, and salad leaves such as spinach, lettuce,cos, lollo rosso but no seeing improvement. I expanded my diet with a couple of foods (fruit juice and nectarine, more meats inc. pork, chicken, but DD2 immediately got worse) I am now eating just lamb, quinoa, potato, banana, pear, pure allergen free sunflower spread, salad leaves, avocado and occasionally a rice cake.

 

We are still seeing no improvement and we are at almost 16 weeks. She has still had mucus and occasional blood flecks on and off even after following the very restricted diet now. I am also struggling as I don't think I'm getting the nutrients I need and am losing a lot of weight. Can anyone give me advice or help - am off to the doctors again today and I know they will try to push the neocate route and I don't feel like I'm getting any support to continue BF her.

 

Thanks and sorry for the long post.

 

Claire

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#2 of 25 Old 06-27-2011, 07:02 AM
 
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grouphug.gif I have so BTDT! For the record my DD couldn't even have a formula so stick with the BFing!

 

*I* would do a strict diet same meals everyday for a month. Avoid beef, eggs, dairy, gluten (wheat), soy, corn, dairy, also any other animals BM products (goat's milk etc), and nuts and seeds (the sunflower butter could totally be the issue here!)

 

here would be a sample diet to stick to.

 

breakfast: Gluten free oatmeal, and a protein (bacon maybe?) OR fresh fruits and a protein

 

snack: fruit or veggies

 

lunch: rice and beans

 

snack: dark leafy green salad with olive oil

 

dinner: baked chicken or lamb with roasted potatoes and vegetable of choice.

 

Don't limit your portions b/c you will most likely lose weight anyways...which is ok trust me I lost 70lbs.

 

I think eating good fats is important and adding olive oil to everything helps!

 

Once the symptoms go away you can try adding things but not before.

 

ALSO if you are eating animals that are soy and grain fed as oppose to free range pastured that could be causing a reaction. Can you get local meats?

 


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#3 of 25 Old 06-27-2011, 01:26 PM
 
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I have also been there! Please don't give up! As you already know breastfeeding is so great for you and your daughter. We had similar issues with DD2 starting around 2 months. She had the green mucusy poos with blood in them. I did a total elimination diet which was extremely hard but it allowed me to get her to baseline and continue nursing. I literally ate lamb, rice, squash/zucchini, and pears for 3 meals a day for around 3 months before I was able to start adding in foods with out her having any reactions. And even then it was a very slow process. She is now going on 23 months and we are still happily nursing and I'm so glad I never gave up! I'm sorry to say this but you are going to be hard pressed to find a doctor who will be supportive of you doing such a strict diet, you may have to do this one on your own (but with all our support of course!) I'm here if you have any questions!

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#4 of 25 Old 06-27-2011, 01:29 PM
 
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Quote:
Originally Posted by sosurreal09 View Post


 

Don't limit your portions b/c you will most likely lose weight anyways...which is ok trust me I lost 70lbs.

 


ALSO if you are eating animals that are soy and grain fed as oppose to free range pastured that could be causing a reaction. Can you get local meats?

 



That's so funny, I lost 70lbs also throughout the process :)

 

And, great point....we are able to eat grassfed beef but get GI problems from grain fed beef. I think the same went for chicken at first but we do fine with grain fed chicken now.

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#5 of 25 Old 06-27-2011, 01:42 PM
 
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I would bet 98% that the colitis is NOT from breastmilk but something in your diet.  I would do a strict ED (the one think I did see in your post that made me wonder was the seeds.  Aren't seeds, including sesame one of the Top 8 in the UK?)  Sometime one seed mans others as well.  If you are on supplements, watch those too!  

 

An ED isn't perfect but it's a start and it is also NOT a long term thing!   I would go back to that for 3-4 weeks.  VERY strict (there are plenty of people here who can help you with food ideas!)  I would also keep a very detailed food log (sometimes something you didn't notice pops up as a "HaHA!" with a food log).  I included things like if we were outside, contact with animals, over other peoples houses as well as foods and how baby was doing (poops, sleeping, attitude).

 

Hang in there.  There is a lot of support here! Good luck!

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#6 of 25 Old 06-28-2011, 06:34 AM - Thread Starter
 
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Sorry for the delay in replying - my husband is away for a few days out of the country and so I'm trying to cope with both DDs which is a struggle when DD2 is up 4 times a night for a feed and the other is in the grip of the terrible 2's.

 

Thanks all for your suggestions. I am really trying to keep to this elimination diet but I don't feel I'm getting enough nutrients into my body.  Yesterday I started to feel like I had a lump in my throat and am worried that my thyroid is becoming enlarged.

 

I am going to try to cut the sunflower spread and replace with olive oil (I have been using olive oil sometimes over the Quinoa to bump the calories). I've also decided to cut Quinoa and try to just have lamb for protein.

 

The problem I'm finding in the UK is that it doesn't seem geared up to support people in this situation - I spent all weekend going to pharmacy/health food places to find supplements which were hypoallergenic. Not one store stocked a vitamin supplement without either milk or soy or other known allergen. So currently I am not taking a multi-vitamin and only taking a calcium supplement that doesn't list any allergens but I'm not sure I trust it so not taking every day.

 

I haven't been using organic/free range meat - she seemed to react to chicken, and pork but now I wonder if its the meat or if they had trace amounts of soy or other feed. I have tried 2 types of bean,  black eyed and adzuki (I think it's called) and she didn't take to either. I also tried some canned borlotti beans but that was a while back. I've not tried oatmeal. I can't seem to get her to be "baseline" if that means no mucus or blood even now on the very restricted diet and I have developed a huge fear of trying anything new as when she has an episode, it can lead to hours of crying and I'm tired from lack of sleep and lack of eating. I am desperately trying to do whatever it takes to do the best for her, but am scared my body will let us both down again.

 

I also feel a terrible guilt that this is all down to me - my diet was crappy during pregnancy as I had so many aversions to foods and terrible morning sickness and remained crappy for the first weeks of her life as I just didn't have energy or time to cook/prepare fresh foods. Did anyone else feel like that?

 

I think the worst thing is that no-one so far explained anything to us, we don't know how severe it is and we have no idea of the prognosis.  She seems to be sensitive to so many things I'm terrified not only now of her becoming worse, but what will happen in the future (like introducing solids) I have to return to work and she will have to go to a nursery. Just can't see any light at the end of the tunnel. Thanks again for all of your supportive posts, it helps to know others are or have been in the same situation.

 

Sorry for rambling again - I'm feeling drained today and thanks for the support you've all offered me the best support I've come across so far & put the health systems in the UK to shame. 

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#7 of 25 Old 06-28-2011, 06:37 AM - Thread Starter
 
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Sorry for the delay in replying - my husband is away for a few days out of the country and so I'm trying to cope with both DDs which is a struggle when DD2 is up 4 times a night for a feed and the other is in the grip of the terrible 2's.

 

Thanks all for your suggestions. I am really trying to keep to this elimination diet but I don't feel I'm getting enough nutrients into my body.  Yesterday I started to feel like I had a lump in my throat and am worried that my thyroid is becoming enlarged.

 

I am going to try to cut the sunflower spread and replace with olive oil (I have been using olive oil sometimes over the Quinoa to bump the calories). I've also decided to cut Quinoa and try to just have lamb for protein.

 

The problem I'm finding in the UK is that it doesn't seem geared up to support people in this situation - I spent all weekend going to pharmacy/health food places to find supplements which were hypoallergenic. Not one store stocked a vitamin supplement without either milk or soy or other known allergen. So currently I am not taking a multi-vitamin and am taking a calcium supplement that doesn't list any allergens but I'm not sure I trust it so not taking every day.

 

I haven't been using organic/free range meat - she seemed to react to chicken, and pork but now I wonder if its the meat or if they had trace amounts of soy or other feed. I have tried 2 types of bean,  black eyed and adzuki (I think it's called) and she didn't take to either. I also tried some canned borlotti beans but that was a while back. I haven't tried oatmeal since giving up dairy before I did the TED. I can't seem to get her to be "baseline" if that means no mucus or blood even now on the very restricted diet and I now have a huge fear of trying anything new as when she has an episode, it can lead to hours of crying and I'm tired from lack of sleep and lack of eating.

 

I also feel a terrible guilt that this is all down to me - my diet was crappy during pregnancy as I had so many aversions to foods and terrible morning sickness and remained crappy for the first weeks of her life as I just didn't have energy or time to cook/prepare fresh foods.

 

I think the worst thing is that no-one so far explained anything to us, we don't know how severe it is and we have no idea of the prognosis.  She seems to be sensitive to so many things I'm terrified not only now of her becoming worse, but what will happen in the future and can't see any light at the end of the tunnel. I would be happy to do whatever it takes to do the best for her, but am scared my body will let us both down again.

 

 

 

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#8 of 25 Old 06-28-2011, 08:34 AM
 
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I'm so sorry you are going through this! I know it is hard, especially when you don't have support around you. It definitely is hard at first but once you get to baseline it gets easier from there. As far as the seriousness, our GI reasurred us that the blood was not causing any permanent damage.

You definitely want to take care of youself too. Can you order vitamins online?

 

Here's what I was eating when I was trying to get DD2 to baseline: Breakfast was either leftovers from dinner or cream of rice cereal and a pear. I would cook a huge pot of jasmine rice (DD2 didn't seem to do well with brown rice) and add olive oil, saute zuchini and squash in olive oil and garlic and onion powder, and brown some lamb then mix this all together. I would eat that for lunch and dinner (and sometimes breakfast). Yes it did get old eating the same thing all the time but I would eat a lot of it so I felt like I was getting nutrients and it did not take DD2 long to get to baseline. Once she was at baseline for a while I started SLOWLY adding things back in one at a time. I started adding a vegetable in and waiting about a week to make sure there were no reactions. At first she was reacting to everything I tried to add in so when she reacted I just went back to my basic diet until she was back at baseline and then tried again. Eventually she started tolerating more and more. After I had a variety of vegetables I started adding in more fruits. Then I was able to add in hemp milk. Eventually I was able to eat smoothies with rice protein. Lamb was our only meat for a while but eventually I started being able to eat chicken again so that gave me some variety with dinners. By the time she was around 1 we were eating pretty varied and DD2 was doing great as long as we avoided the top eight allergens +  all gluten and oats.

Also, we didn't start solids until she was about 9 or 10 months and we went very slowly with that too. She ate only pureed pears for the longest time :p

 

Please don't feel guilty about how you ate during pregnancy! If it makes you feel any better I ate nothing but fast food with DD1, I ate pretty healthy with DD2. DD1 ended up having gluten and dairy intolerance but didn't have near the GI problems that DD2 had. So you just never know. A friend of mine quotes this all the time "we did the best we could with what we knew, and when we learned better, we did better" ~ Maya Angelou

 

Could you give us a list of everything you eat and maybe we can help you better there?

 

Hope this is helping! Keep asking questions and we'll keep trying to help :)

 

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#9 of 25 Old 06-29-2011, 09:44 AM
 
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How are you at baking? I used to bake a lot when on this diet! You can buy rice flour or chickpea flour (higher protein and density) to bake with.

 

I always made muffins with this recipe

 

1 cup rice flour

1 cup chickpea flour

blueberries

1/2 cup sugar

2tsp baking powder

1/2 cup olive oil

1/2 cup of water or coconut milk (so delicious)

 

Have you tried the So Delicious coconut products? They are amazing and allergen free (unless you have a coconut allergy..)

 

Also have you checked out the allergy board yet?

 

I take the Rainbow Light pre natal vitamins they are vegan BUT do have a small amount of soy lecithin in it which some kids don't react to with a soy allergy but some do...

 


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#10 of 25 Old 07-05-2011, 08:18 AM - Thread Starter
 
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Hi Everyone,

 

We still have no improvement. DD2 took a turn for the worse at the weekend. I tried to take a omega 3 pre-natal supplement as I read that it could help with inflammation, I think this was a bad move. I bit open the capsule and drank the oil (yuk) but DD2 got worse. I then tried flaxseed oil but that too didn't seem to agree with her.

 

I am currently eating New Zealand Lamb (I tried local butcher who recommended some local lamb but she was cranky afterwards so didn't trust it) I read that New Zealand Lamb is only gras fed.

 

Potato - I eat these baked

bananas

pears

sometimes I have plums

mixed salad leaves

and the sunflower spread which is "allergen free" according to the manufacturer

 

and that is it - nothing else (apart from water and the calcium tabs)

 

Things I've tried:

I tried olive oil on the potato instead of sunflower spread but she seemed worse.

I tried carrots - she seemed worse afterwards

I tried white basmati rice - she seemed worse afterwards

I cut avocado as she seemed worse afterwards

sweet potato yesterday but she may still have been reacting to the fish oil or flax oil.

 

I've given up quinoa - no change seen so I can maybe add that in again

 

She seems to be finding it increasingly difficult to pass her poo and fusses for hours before she can pass it and I'm worried the inflammation is narrowing her bowel.

 

She seems to do two large poops in the morning these are liquid/mucussy and the mucus looks pus colored (sorry if TMI) then after that the poops can be just tiny mucusy ones with what looks like very little poo. She will still have the occasional tiny flecks of blood.

 

I'm scared to introduce other foods, & it still seems that there is still something I'm eating that doesn't agree with her. One thing I remembered is that after her 8 week vaccinations, the plasters that the nurse put on her legs gave her 2 raised marks on her legs where they had been. I am now wondering if this is a latex-food syndrome thing and that it's the potatoes and bananas but if I can't have those and she can't tolerate the rice what can I do for complex carbs?

 

She gained weight well at the last weigh in and is tracking between 50th and 75th %ile after she dropped a little previously. She is feeding badly during the day (arching, kicking her legs/stiffening/rolling away) and ok at night She fed 4 times between 11pm and 6am last night (which is around average). She is now 16 weeks so I wonder if feeding issues are just down to her awakening to the world, but always worry that she's uncomfortable.

 

Dr as suspected gave a prescription for Nutramingen and wouldn't refer us to different doc until I had decided what to do (even though I said I wanted to try to Breastfeed) Have to go again this week will see different Dr and husband is coming to hopefully support, but I think he is beginning to think we need to go to bottle/formula also.

 

Feeling down aout it all again today when I see some improvement I think we can get throught this, then she gets worse and I feel crushed again.

 

 

 

 

 

 

 

 

 

 

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#11 of 25 Old 07-05-2011, 03:44 PM
 
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I am telling you the sunflower SEED butter is not allergen free if she is allergic to seeds which is HIGHLY probable. I know I could not eat it with my DD. I would absolutely cut that out and wait for improvement!

 

I would seriously get rid of the sunflower butter and see what happens, I mean this with no snark at all I am only concerned for you and your DD and your BFing relationship.

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#12 of 25 Old 07-08-2011, 04:36 AM
 
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I've been reading these posts the past few days for information and encouragement.  My baby girl is 4 almost 5 months old and I have just begun the elimination diet.  The GI specialist we went to this week "diagnosed" her with Breast Milk Colitis.  He wanted me to nurse her until 6 months and then put her on formula.  He also told me to start giving her baby food now.  

 

As of now, I plan on breastfeeding her indefinitely and I am not giving her baby food until her stool is back to normal.  

 

I'm currently eating rice, potatoes (regular and sweet), pears, and squash (having trouble finding free range lamb currently). I'm using salt, pepper, and olive oil for seasonings.  I bought some free range chicken this week, but I'm a bit too scared to try it.  I stopped taking my prenatal which had all sorts of additives, and am waiting for a soy free vitamin to come in the mail.

 

I guess my main concern right now is my milk supply.  I know that all one needs is water to breastfeed, but am becoming concerned that my baby will not be getting all she needs....does anyone else feel this way?

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#13 of 25 Old 07-08-2011, 05:26 AM
 
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I totally felt that way but my supply never dropped! Not once. (and there was NO way I was eating enough calories) Your body is amazing and it is a supply and demand business. You have got to just trust your body!


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#14 of 25 Old 07-10-2011, 11:44 AM - Thread Starter
 
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Hi Sosurreal

 

I gave up sunflower spread for a day and replaced with olive oil, but she seemed to get worse, but stupidly I guess just added it back in thinking that it wasn't the problem. I've given it up since your last post but still no improvement. I initially thought DD2 was getting better - she started sleeping longer (although poo was not improved at all and got worse) then yesterday she was very refluxy/gassy and started with a croupy cough last night. I am assuming this is a cold as my 2 year old has a cold at the minute although I did read that it can be caused by allergies and reflux so since her reflux was bad I don't know if this made it worse or is the cause. She doesn't seem to have any other symptoms of a cold but the virus could have knocked her out for the days befor the symptoms began. (actually this made me more determined to carry on feeding as I know that illness is really cut short from BFing).

 

What I did find is that because she was sleeping more and feeding less that I had a lot of milk and I am now wondering if this has caused her stomach to get worse. I know oversupply can cause upset stomach and I have always had what I feel is an OALD as both my DD's have struggled to cope and have to gulp it down quickly. If she's been living with this since birth essentially, could she have developed a bad case of lactose intolerance and the problem be that and not actually allergies?

 

Any advice you can give would really help and don't worry about trying offending me with any posts - I'm so tired, worried and upset about DD2 most of the time I can find it hard to think straight which is why I was a bit dumb about the sunflower stuff.

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#15 of 25 Old 07-10-2011, 05:21 PM
 
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I totally sympathize with you here! i got to the point where I was like WTF nothing is working here!!!!

 

Don't forget it takes 2 weeks for the food to be cleared from your body/milk so you probably will NOT see improvement with her until 3 weeks.

 

So if she has reflux WHAT med is she on b/c some of those meds do cause stomach issues and diarrhea?! Learned that the hard way!

 

She should be used to your flow by now, I always have instant let down and DD chug-a-lugs but she is used to it and it never caused an issue....however I am inexperienced with it causing a problem so who knows really. I suppose you could pump for a few mins and try and get the faster flowing milk out a bit so she won't "drown" in your milk but that would certainly be a PIA.

 

If she *is* lactose intolerant truly I think BM has like 9% lactose in it and I would think it could cause discomfort and diarrhea but I don't *think* it would cause blood...but I'm not 100% here is a link I found about BFing and lactose intolerance http://baby.families.com/blog/ask-a-baby-blogger-can-i-still-breastfeed-if-my-baby-is-lactose-intolerant

 

here is a very interesting article about it too http://www.breastfeeding-problems.com/lactose-intolerance-in-babies.html  Especially "Lactose Overload" I wonder if that could be it?

 

 

Basically it would be insanely rare for a baby to actually be allergic to breast milk! (Which is good news right?) So it is doubtful that could be the real issue here. I feel really badly that you don't have any supportive Dr's and everyone's answer keeps being "just FF". (however if you went that route don't guilt yourself)

 

I feel like olive oil is a weird thing to set that off...I am wondering if it could actually be a fructose intolerance? (which is also pretty rare but not unheard of) I know there are women on the allergy board here who have successfully BF with this...

 

HTH grouphug.gif

 

 

 

 


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#16 of 25 Old 07-12-2011, 09:53 AM
 
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I came over the allergies board just now to look for info on preventing breastmilk colitis and saw your thread. I too have BTDT, and I know this is excruciating.

I have a now 6 year-old DS who had severe breastmilk colitis as an infant. We did end up going to Neocate, and he improved a lot. I continued the ED for a month while pumping and tried to nurse again, but he reacted very strongly after very little breastmilk. I do believe that many moms and babies can make it through with nursing on an ED, and I hope that is the case for you. In my case, I know now that the move to Neocate was the right thing for my baby and my health too even though I felt guilty for a long time. I became underweight quickly and did develop problems with my thyroid (not necessarily related, but you mentioned your thyroid feels enlarged. I'd get it checked out if I were you). We did have a bumpy road in terms of introducing solids until DS was about 18 months old when we started having much more success than failure, and by age 3 he was able to eat anything and everything and is a very healthy child. It was such a difficult time though, and I think it was a big reason why it took me and DH so long to be ready for another baby. I'm just starting my third trimester now, and I'm starting to think about if I should eliminate anything before baby is born or if there's anything else I can do to avoid going through this again. Best wishes to you and your baby. I hope you find a workable plan soon.

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#17 of 25 Old 07-12-2011, 03:07 PM
 
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How is her weight gain?


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#18 of 25 Old 07-20-2011, 03:23 AM - Thread Starter
 
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Sorry for the late reply. the last couple of weeks have been rough. DD had croup like cough for a few days (don't know if it was the reflux or a cold) so very little sleep. we're also moing house on Friday so we're really busy with that.

 

So we seem to have some change but I don't know if good or not! I've given up the sunflower spread and now have the hypoallergenic vits and calcium delivered (I'm taking perry prenatal (I take it out of the capsule) and kirkman calcium powder with vit D3).

 

DD stopped having mucus after about 4 days of giving up the sunflower spread but now has basically very watery poo.  I wondered if this was an improvement sign or things are getting worse (I can't find anything online about what happens when the gut begins to heal) but I would have expected that her poo would have started to go back to a normal breastfed poo

 

After a few days I tried to add some things in. I tried plums - seems ok. I tried olive oil again but bad reaction. I searched online about olive oil allergy and found a few mums commenting on an article that atually a lot of Olive oil is contaminated with other cheaper oils either accidentally or deliberately so I tried to put the oil in the fridge as they said that genuine EVOO will solidify in the fridge - it didn't at solidify at all so I now wonder if it had some other oils in it and may try to buy another brand to see.

 

I also tried to add a small amount of gluten free honey puffed oats. I think she can tolerate a small amount - I have about a tablespoon.

 

I tried a raw carrot a couple of days ago and she had mucus back in her poo so I think that's out. I'm worried that I'm not getting any good fats at all, so maybe her poop won't be normal as my diet is not normal. I'm also eating lots of bananas which I'm worried is causing too much pottasium. I treid to take some probiotics also as I read that they can travel through my BM but I'm worried as they contain "citrus pectin" which I'm not sure is good or not.

 

Her weight gain is great - and GP is very happy with her weight and she seems to be hitting milestones (she's smiling, giggling occasionally when I make her laugh), we can't really do tummy time and she's alert and pink, but when she needs to do a poop she is very fussy for a couple of hours and always wants to feed to try to get it out if that makes sense and she gets beads of sweat sometimes when she's eating and trying to poop so I guess she is in pain. She is also feeding a lot through the night sometimes every 1.5 hours and I am exhausted with that.

 

If anyone can advise if watery poop is a good sign or not from experience please let me know.

 

thnx

 

 

 

 

 

 

 

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#19 of 25 Old 07-20-2011, 07:42 AM
 
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Glad to hear of improvement!

 

My first thoughts on the watery poo is that it's viral and relating to the cough...How long has it been going on? As for the pain I just don't know that seems like a physical intestinal issue perhaps? I am afraid of how they would diagnose anything though b/c it would probably be through an colonoscopy!

 

I would wait and see when her virus is gone and she is back to normal if the poo fixes itself and the pain goes away.


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#20 of 25 Old 08-16-2011, 03:32 PM
 
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Hey JW how things are going for you guys?


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#21 of 25 Old 08-22-2011, 05:52 AM - Thread Starter
 
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Hi there

 

We are really struggling here. DD2 went backwards after the water poo and back to mucus and occasional blood flecks. I have been surviving on lamb, potato and banana for a long time. I cut the vitamins, as they seem to make her worse (these were supposed to be hypoallergenic). I tried her on some probiotics (kirkman inulin free probiotics) and was told by the dietician to try to expand my diet again at the same time so I added broccoli, gluten free oats, salad leaves back in, and beetroot one at a time each day. DD2 got increasingly worse throughout that week (sleep was very disturbed although poo didn't appear chanced) and then passed the most blood she's ever had after 5 days. So again I went back to the baseline (if you can call it that as we've not yet had any mucus free poo for some time).

 

I am now using the formula (neocate) that she has been prescribed to up my calories and add essential nutrients and good fats etc which I feel embarrassed about admitting to the dietician as I think everyone will think I am going crazy and we are all struggling as a family. At this stage I am now trying to get her to accept some of the formula as I will use it to make up the solids we introduce.

 

I visited another Ped Gastro and she said "lets get this straight, a little bit of mucus and blood occassionally is nothing to worry about" and advised that I should consider weaning her onto formula and add/start solids! DD2 is generally happy although really finds it impossible to sleep for any stretch longer than a couple of hours and very, very difficult to get to sleep and often fussy unless distracted. Me and my husband are exhausted and I feel like the wheels are about to fall off. I'm scared my poor toddler is seeing her mummy disintegrate before her eyes.

 

Dietician's advice was simply to avoid Milk/Egg/Soy and Wheat again and expand my diet to only exclude these things. I had a meltdown at our local weigh-in clinic when they asked why she hadn't gained weight for the last 2 weeks (I think that this is likely to happen at around this time as solids are due to be added and I am so tired I can't imagine my milk supply is enough) and said that I keep telling people that I don't feel confident about following their advice based on what's happened previously but they won't listen. They want me to try her on baby rice so am trialling it in my diet again to see if she can tolerate it along with brocolli again.

 

I am now terrified of introducing solids and keep telling everyone that but having zero support to do that. She has started getting a croupy cough again last night and I think that's evidence that her reflux is worsening (which I understand is quite common in babies with this between the ages of 5-7 months). I can hear her bringing up her feeds into her mouth and she will often cough/choke and wake herself up. She has never been given any reflux medication either (apart from infant gaviscon which is useless if you are breastfeeding), I think because she looks so healthy and happy generally unless trying to get to sleep or "reacting" to a food, then they aren't taking me seriously.

 

I have tried my best but I don't know how much longer I can do this for. She won't take the formula or cup anyhow so I have to breastfeed her regardless of what I want or what is best for her and it's the only way she will settle to sleep (it's always been the only way she can settle to sleep). I am just hoping we can find a diet of solids that she can tolerate...

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#22 of 25 Old 08-22-2011, 06:24 AM
 
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OK when re-introducing a food I would only do one for one week and then try another. A different one daily is too much too soon and it won't help you isolate the food.

 

NO way in hell would I start her on solids! They are INSANE! OMG she is reaction to different foods in your body and they want you to give her them straight?! That makes no sense at all.

 

They literally said that same thing to me that "a little blood" wasn't a big deal and some babies/people will ALWAYS have that. It may be something you have to accept. If she is content it just may be the way it is. There certainly is not anything else you could cut out. I'm thinking if she is having a reaction with what little you are eating she would probably have that reaction on the neocate too.

 

Here is the ingredients: Corn Syrup Solids (57%), Refined Vegetable Oil (Medium Chain Triglycerides (Palm Kernel and/or Coconut oil) (7%), High Oleic Sunflower (7%), Soy (6%)), Calcium Phosphate Dibasic (2.5%), and less than 2% of each of the following: L-Arginine L-Aspartate, Tripotassium Citrate, L-Leucine, L-Lysine Acetate, L-Glutamine, L-Proline, L-Valine, Glycine, L-Isoleucine, CAEM (an emulsifier), L-Threonine, L-Phenylalanine, L-Tyrosine, L-Serine, L-Histidine, L-Alanine, Sodium Chloride, L-Cystine, L-Tryptophan, L-Methionine, Magnesium Acetate, Magnesium L-Aspartate, Potassium Chloride, M. Alpina Oil*, Choline Bitartrate, M-Inositol, C. Cohnii Oil**, L-Ascorbic Acid, Ferrous Sulfate, Zinc Sulfate, Taurine, L-Carnitine, Sunflower Oil, Niacinamide, DL-alpha Tocopheryl Acetate, Calcium D-Pantothenate, Cupric Sulfate, Manganese Sulfate, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Acetate, Thiamine Chloride Hydrochloride, Ascorbyl Palmitate, Potassium Iodide, Chromium Sulfate, Mixed Tocopherols, DL-alpha Tocopherol, Phylloquinone, Sodium Molybdate, Folic Acid, Sodium Hydrogen Selenite, D-Biotin, Vitamin D3, Cyanocobala

 

I see some red flags and a lot of who-knows-what in there. I can not believe the price!!!! OMG for corn syrup? It's 57% corn syrup and $139 for 4 cans?! What? (BTW our ped said she couldn't have this b/c she had a reaction when I ate corn, so IDK why they are telling you it's OK)

 

At this point I would just keep nursing and if she is content that's all that matters. Some kids are not good sleepers period. My DD never was even after she stopped having reactions and she always (and still does) take forever to go to sleep!

 

If you think she has reflux maybe try something homeopathic for it b/c the prescriptions can cause diarrhea. http://www.thehomeopathiccoach.com/blog/crying-babies-reflux-and-homeopathy.html has some tips.

 

Also I would really try adding coconut to your diet if you haven't already (real coconut, oil, butter) but make sure it is ONLY coconut in it. My DD did not react to it thankfully, but really it's good fats that you need. If she doesn't get better, but isn't worse or in pain I would continue to eat it....I think that's how it is going to have to go now, just look for more blood or her being more fussy.


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#23 of 25 Old 08-22-2011, 06:27 AM
 
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grouphug.gif Big Big hugs! I am so sorry to hear it's not going so great.


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#24 of 25 Old 08-22-2011, 07:15 AM
 
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Big hugs!!! We were in a similar boat when DD2 was about 2 months. I was down to eating lamb, rice, and squash/zuchini. I ate this for 3 meals a day for about 3 months or so. She reacted to potatoes so that may be something for you to look at. We did not introduce solids until about 9 or 10 months and even then it was VERY slowly. She ate only squash for the longest time. Have you looked into the SCD diet from the book Breaking the Viscous cycle? This may be something that might help her by you following it. I would definitely take the formula out of the equation. I'm so sorry you are not getting any support!! There's just too many people out there that think it's not that big of a deal to put a baby on formula so why try so hard to continue breastfeeding. It's sad. Once you get the diet figured out your milk is going to be the most hypoallergenic thing she can get so don't give up! Do google SCD though and see if that might be something you're willing to try, I really think it may help.

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#25 of 25 Old 09-19-2011, 01:16 PM
 
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My son has had the same problem from about 2 months and he is now 9 months old .Seems like it all started after he had every stinkin' vaccination--which I regret immensely.   He had awful gas cried for hours every night and sometimes during the day too. Had watery, explosive green poop then turned to really mucusy with blood spots and sometimes streaks. Went to three different ped. and one ped GI spec. and she just said to stay on the elimination diet and cut out even more things. So exhausting.

 

I know how you feel. I have been on elimination diet since he was about 3 months old and he seems to be allergic to almost everything: wheat, corn, dairy, mango, blueberries, eggs, avocado, possibly also beef, grapes, and olives. I feel like giving up almost every other day.

 

I have to know, what have you figured out? How did you figure it out? Too afraid to start solids yet.

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