Please help with next steps - breastfeeding at major risk

[DeChRi]

Hi,
Some lovely ladies in the Breastfeeding Forum recommended I roll this direction. The history is here: http://www.mothering.com/discussions....php?t=1251449
It's now 9 pgs, so the short version is:
DD1 and DD2 had no allergies and BF-ed exclusively for years. DD3 was a very calm and docile baby/nurser for 4 weeks, then started rapid decline.

Foremilk/Hindmilk/oversupply/overactiveletdown issue, block fed and took care of it.

Was better for a matter of days, then by 6 weeks we declined into the abyss. The Dr had us tracking cry hours and from 6 weeks forward she cried 10-16hrs/day. Gut pain, stiffness, spitting, congestion. Even when she was not crying, she was miserable. A couple things worth noting: 1) Bowels were always normal and Dr fecal test showed no blood. 2) by night she was burnt out, and while sometimes fidgety at night, never sceamed...just crashed. 3) No rashes of any kind.

It got worse and worse. Finally, around 10-ish weeks, we agreed to do 48 hours on elemental formula. Within 36 hours she was new baby. Not crying, not hurting, smiling....total turnaround. We went back to nursing and I started an emilination diet, under to eye of our ped, the LLL ladies, and the LC's at the hospital. I was eating just turkey, millet, brown rice, sweet ptotatos and squash. They all said she should get progressively better. A week later, zero improvement. None. We went to see a specialist in Nebraska that is a pediatrician and lactation consultant that specializes in allergies. She said just hold the course. We stayed on it....we did one 48hr of spurt of elemental formula during those 3 wks to give her a break. I did that diet, with no seasoning, condiments, nothing....made sure nothing was in my vitamins, covered all our bases. Also had DD3 on probiotics and Prevacid. During those 3 weeks I had one "cave" and ate 2 bites of a protein bar. That is the only "contamination" during that 3 week period. At the end of those 3 weeks I went to back to full on breastmilk, after a 3rd 48 hr on formula to calm her down. Within 36hrs of breastmilk she was screaming, throwing up everything she ate, with phlem, was congested, and back to 10+ horus a day of crying. ZERO improvement, if not a quicker and more severe onset of symptoms.

She is now back on formula. I am continuing to pump and am eating freely to get my weight back up. The Dr recommended staying on the formula for a couple/few weeks to heal her gut, as did several ladies on these boards. I am trying to decide where to go from there.

I have 2 other kids and am struggling to pump so often, as the weeks of sceaming has caused a real decline in my 2yr old. Even at 2100 calories of those foods, I still lost a bunch of weight.

Any ideas, feedback, would be great. I am going to keep DD3 on formula for 3-4 wks and pump as much as I can. My real question is what to do, dietwise, moving forward. It is very hard for me to think of putting DD3 through that pain of trial and error again. As well as the rest of the family.

Open to any and all ideas, as I think I have maybe one more crack at it in me. I just cant let go of bf-ing, as my others nursed for 4 and 2.5 yrs respectively.

Thanks, J

[mamafish9]

Hugs mama, what a journey.

First off, I think you've had some good advice and some bad. If you're on a strict TED and don't see improvement in a week (and formula you get a totally new baby in a day), then something you are eating on the TED is still a culprit. It *can* take several weeks to clear dairy and gluten totally out of your system, but you should see solid improvement within a few days if you have all the major offenders out.

On your TED, you were eating turkey, millet, brown rice, sweet ptotatos and squash. There are kids in this forum who react to each of those. Also were you taking any supps while on the TED? Lots of vitamins have additives that can cause issues (or rice filler, or hidden corn), and vitamin C & E are often corn & soy derived. Can you post a link to any supps you are taking?

If it were me, with your babe already on formula, maybe start doing some trials with a single bottle of pumped milk. Go on a TED for 2 days, pump at the end of two days, feed the babe one bottle (you might time it so the bottle is in the morning, so you can watch closely for reaction during the day).

I'd start with a really basic TED (and different foods since you were trying before, since something on that list is likely a problem). Can you get ground lamb? Lamb seems to be a really non-allergenic meat. So I'd try something like lamb, olive oil, salt, and zucchini or butternut squash for two days. Trial a bottle of milk, see what happens. If one bottle goes OK, try a second (so pump 2-3 bottles of "TED" mik before you add another food in).

You can either do this a couple days at a time, or do two days on those 3 foods, then add one more food for two days again, pump and trial.

[DeChRi]

Thanks Mamafish. Should it matter that none of those foods I ate during the ED were foods that I ate in quantity before? We ate turkey, brown rice, sweet potatos and squash on occasion, but not with any regularity. Does that make sense? And if it was dairy and/or gluten, then wouldn't 3 weeks without have offered SOME relief? I'm just thinking my questions aloud...

And is it normal to have No stool or skin symptoms? I'll find links to the supps (posting from phone here), but the only thngs I tooks during those weeks were a probitoic & calcium, both of which came from the breastfeeding allergy Dr and were free of any potential allergens.

Also, I get mixed opinions on starting another TED and adding pumped milk in quickly vs stating on formula awhile and letting her gut heal well first. Any thoughts there?

Thanks for the advice, and for letting me think through it aloud!

[mamafish9]

No, babes can react to any food, it doesn't really matter how regularly you ate it before.

If the culprits were ONLY dairy & gluten, then you'd likely have seen signficant improvement in a few days (with some lingering issues for a few weeks perhaps, as they totally cleared out). No improvement suggests to me you were still eating a major trigger (that doesn't mean dairy & gluten are OK, you won't know that until you hit baseline with your little one). When we just took out dairy for my son - nothing. Once I had everything he reacted to out, I tried to reintroduce dairy, and it was clear it was a problem.

Reactions can really, really vary. And they can change over time. My son used to get stuffy from dairy, then his reactions became purely behavioral.

Guts take months to heal. Like six months minimum. I think doctors mostly say that to get moms who don't want to stop bfing to switch to formula. But I'm not very objective, I'm not fond of most doc advice re: food reactions . And you're not seeing "gut" symptoms as your primary indicators. So I'd be trialing "TED" pumped milk now. It's true that she may tolerate more foods after her gut heals more - but that's a process of months, maybe years, not a few weeks. So I'd work out what she can tolerate now, and see if you can find enough foods to make a workable diet for you.

Oh, and probiotics & calcium - calcium supps cause my child to scream, he's never tolerated me taking them. He can drink milk now, but still can't take calcium supps himself. ANYthing can be the reaction source. Also, probiotics - any FOS, inulin, prebiotics in the probiotics you were taking? My son, and many kids, react very poorly to FOS/inulin. Most probiotics are grown on dairy - they say dairy free, but if your child is very sensitive, the trace dairy from being grown on dairy can be plenty to cause a reaction. My son also reacts poorly to L. acidophilus (in almost any probiotics) - they produce something called d-lactate in the gut, and it makes him scream and fuss all night (at 2 years old). We use d-lactate, FOS free probiotics, and he's fine.

So it might be your TED foods were fine, and the probiotics were the culprit, for example. But just to be simple, I'd try a two day TED with different foods (and no grains to start, but add a fat source), no supps, and see what happens when you give a bottle of pumped milk.

[DeChRi]

I will come back w/ several questions/comments...but top of mind...

Do these things build in their systems? Here is my fear with TED and adding in a bottle evry couple days...each time we go back to breastmilk, she is fine for a day, then slips more each day, until she is back to violent screaming and pain all day long. Each time we add back in breastmilk after a 48hr detox on formula (never thought I'd utter that phrase, lol) it seems like the next "detox" takes longer. I've promised myself that I will not let her get as bad as she was again, period. I'd rather formula feed that put her through that. So I am sooo very timid about when to add in breastmilk again. Or at what point in the TED diet. Does that make sense at all?

[kjbrown92]

Originally Posted by DeChRi

Thanks Mamafish. Should it matter that none of those foods I ate during the ED were foods that I ate in quantity before? We ate turkey, brown rice, sweet potatos and squash on occasion, but not with any regularity. Does that make sense? And if it was dairy and/or gluten, then wouldn't 3 weeks without have offered SOME relief? I'm just thinking my questions aloud...

And is it normal to have No stool or skin symptoms? I'll find links to the supps (posting from phone here), but the only thngs I tooks during those weeks were a probitoic & calcium, both of which came from the breastfeeding allergy Dr and were free of any potential allergens.

Also, I get mixed opinions on starting another TED and adding pumped milk in quickly vs stating on formula awhile and letting her gut heal well first. Any thoughts there?

Thanks for the advice, and for letting me think through it aloud!

My DS didn't have any stool or skin symptoms either. After the projectile vomiting phase passed and we thought he'd "outgrown" the milk intolerance, he would just wake up screaming 10-12 times a night. He didn't start getting a skin reaction to soy until he was about 7yo. So yes, symptoms definitely run the gamut. And my DS is one of those... on his intolerance test, he reacted to rice and turkey. After 2 years off them, he's added them back in on rotation (once every 4 days). If you've ever played mastermind, it's like that. Keep switching out foods until you hit the symptom-free combination (you win!!). After 4 days you should know, and can switch something else out.

Originally Posted by DeChRi

I will come back w/ several questions/comments...but top of mind...

Do these things build in their systems? Here is my fear with TED and adding in a bottle evry couple days...each time we go back to breastmilk, she is fine for a day, then slips more each day, until she is back to violent screaming and pain all day long. Each time we add back in breastmilk after a 48hr detox on formula (never thought I'd utter that phrase, lol) it seems like the next "detox" takes longer. I've promised myself that I will not let her get as bad as she was again, period. I'd rather formula feed that put her through that. So I am sooo very timid about when to add in breastmilk again. Or at what point in the TED diet. Does that make sense at all?

Well things take different amounts of time to get into your breastmilk for instance. For my DS, he would react exactly 24 hours after I'd consumed the offending substance. And then react for the next 72 hours. But other people have said their children react sooner, or later. Now his reaction to soy starts within 15 minutes and is a 10 day reaction for instance. Usually their reaction is stronger after having been off the offending substance.

I agree about the supplements. Probiotics often have dairy in them as a by-product, and there are still other ingredients in it that can be a problem. And it's very hard to find supplements that are safe on a TED.

[mamafish9]

Originally Posted by DeChRi

I will come back w/ several questions/comments...but top of mind...

Do these things build in their systems? Here is my fear with TED and adding in a bottle evry couple days...each time we go back to breastmilk, she is fine for a day, then slips more each day, until she is back to violent screaming and pain all day long. Each time we add back in breastmilk after a 48hr detox on formula (never thought I'd utter that phrase, lol) it seems like the next "detox" takes longer. I've promised myself that I will not let her get as bad as she was again, period. I'd rather formula feed that put her through that. So I am sooo very timid about when to add in breastmilk again. Or at what point in the TED diet. Does that make sense at all?

They can build, or there can just be a lag time for the. I'd personally try one bottle, then wait up to two days (since you seem to get a reaction within that timeframe). If you get no reaction, then I'd try the same milk again, but a few bottles in a row, build it up, see what happens. If you see any slipping, you can immediately stop and assume she's reacting to something on the TED. If not, you have your starting point of safe foods.

So I'd try 3-4 foods, no supps. Do two days, then pump one bottle - if that appears to pass, pump enough milk for a solid trial (maybe 6 bottles?). At that point, you can go back to eating more foods if you want (I'd keep out gluten and dairy, because they take the longest to clear from your system, but you could add the rest back in). Then go through the trial process with your daughter. Once you've done the first round of testing, you can go back to the TED for two days (with food adds or changes, depending on what happened), and then pump milk for a second trial.

[DeChRi]

Originally Posted by mamafish9

They can build, or there can just be a lag time for the. I'd personally try one bottle, then wait up to two days (since you seem to get a reaction within that timeframe). If you get no reaction, then I'd try the same milk again, but a few bottles in a row, build it up, see what happens. If you see any slipping, you can immediately stop and assume she's reacting to something on the TED. If not, you have your starting point of safe foods.

So I'd try 3-4 foods, no supps. Do two days, then pump one bottle - if that appears to pass, pump enough milk for a solid trial (maybe 6 bottles?). At that point, you can go back to eating more foods if you want (I'd keep out gluten and dairy, because they take the longest to clear from your system, but you could add the rest back in). Then go through the trial process with your daughter. Once you've done the first round of testing, you can go back to the TED for two days (with food adds or changes, depending on what happened), and then pump milk for a second trial.

Ok, bear with me here...and thank you for taking the time to walk me through this. So after 3wks on the TED (turkey/millet/squash), I have been 48 hours off of it, eating various foods. So I am kind of starting back at square one. Based on that....
1) If I do the TED again, starting in the morning, with lamb/squash/oliveoil/salt....should I still add in a bottle in 2 days? Is that long enough to see a result?
2) If she reacts negatively to that, where do I go from there? Just give it another couple days? Then another couple? On the same 2 foods?

Readin above, I feel like the consensus is 48 hr without a food is enough to make a difference? Is that correct?

I am really struggling with this one. I just am having such a hard time with finding the bandwidth to chase down something like this. I lost 12 lb in less than 3 wk on the last TED, even though I was eating 2100 cal of the accepted foods. And I dont have the weight to lose.

I feel like I have one more shot...physically, emotionally. After the last few days of DD3 in such pain, DH and I swore we would not put her through more trial and error. It was so bad. So I need to make this last shot count, and not send her back to the state she was in.

So after a 48 hr eating free for all, I am prepared to start back tomorrow with the 2-3 foods and give it a go. Is there any reason not to actually nurse her, vs bottle, for that one trial feeding?

[DeChRi]

Also, the meats I have access to are free range chicken and free range bison. Is there one of those that you would recommend before the other? I have much zucchini as well, so we are set there.

[mamafish9]

Have you gone back on gluten & dairy? Those take a little longer to clear out of your system, so you might go off those for a week (keep eating everything else), then try two days on the TED, then pump (or nurse, that totally works too!).

The deal is, I think it's unlikely you're going to get it done in one shot. Even if the TED works this time, you still need to experiment with adding foods back in, and some of those are going to fail. The difference though is, if you have a baseline of foods you know you can eat, then you take out any new food at the FIRST signs of a reaction, rather than watch your daughter go through weeks of agony.

My thought with doing two days of TED, then nurse, see what happens. If it fails, eat normally (except for dairy & gluten) until she's done reacting, then try a two day TED again (different foods), and trial again. If it passes the first nursing, then you could try pumping some milk so you can keep trialing those foods, while you go back to eating more foods again (so you aren't eating such a restricted diet all the time). Odds are she was reacting to one of your old TED foods or the probiotics - so you just need to try a few combos until you find 3-4 foods she can tolerate. But doing it this way, you wouldn't be starving on a TED for weeks and weeks while you sort it out. Also, the key to not starving on a TED is fat - tons of it. So even in your two days, have a fat source.

Pick the meat you like best, it's basically a toss of the dice .

[elanorh]

I might be old-fashioned, but knowing what you've gone through (and having been there myself) - I would do the TED for longer than a couple days before trying nursing again.

Back when I was EDing my dds, the 'advice' tended towards giving a dyad 2 weeks of an ED to expect things to really clear out of both symptoms - with an expectation that by around Day 5, babe should be improving.

You've been through the wringer. So has your family. Give yourself and your family time to recover a bit here, before you try breastfeeding again. At least the two weeks .... Two weeks of no screaming baby can really give you the perspective and fortitude to get through the challenges of going through reintroductions, trials, etc. In all honesty, if you've never given the formula longer than 48 hours, you may also discover that symptoms gradually increase with the hypo formula and that Neocate or Elecare are your formula options. Something to know/ponder as you're considering your own TED as well ....

Having gone the "gut healing" route with dd1, we were told to give it a month of elemental formula and then return to breastmilk. As I mentioned in the other thread, dd1 had serious reflux and allergies, only gained a pound in her three months and at that point had begun to lose weight. She did have all the big allergy signs, and we had been on a gradual Elimination Diet (this was before I had ever even looked for Mothering online, simply under Ped direction, I learned a lot more during the process, after her hospitalization = Ped had us eliminate dairy/soy, then wheat/egg, and I eliminated legumes myself on a hunch.... ). What I know is that I didn't change my diet during that month that Ina was on Neocate - and before that, she was in terrible shape, I was worried about whether she would survive at that point. And after that month on Neocate (again, no changes at all on my diet) - she was able to gain and her reflux was better, on my same TED breastmilk that she hadn't been able to gain on prior to that. There really is a lot of bad advice out there, and pp is correct - many doctors try to scare moms into switching to formulas because it's what they can control, and give abysmal advice about the where/when/whys/hows of infant allergies, elimination diets, etc. But in my case, the advice I was given did work. Ina went on to nurse 'til she was 2 1/2.

[kjbrown92]

It took 4 days (96 hours) for food to get out of my breastmilk and my DS to stop reacting, so no, I do not think that 48 hours is enough. We want you to succeed, so making sure the potential triggers are out of your milk would give you the best answers.

On the choice between bison and chicken, it's a toss up. My DD2 is intolerant to beef, and DS is intolerant to chicken. Either one is a potential trigger.

And isn't 2100 calories what a non-breastfeeding person is supposed to consume? Shouldn't you be striving for more than that? I'm not a calorie counter, so I don't know what it's supposed to be, it just sounds low. We get a LOT of our calories from fat in this house.

[DeChRi]

Ok, this all makes sense. I have eaten dairy/gluten in last 2 days.

So here is what I am thinking...tell me if this reasonable. I feel like I need a "baseline" of happy baby from which to guage reactions. Yesterday we hit 48 hour on the formula and there was not the 100% turnaround we've had the other times. My supply is still okay, so I am going to give her a few more days on the formula to get square, and make sure she isn't reacting to it.

For me, am thinking on chicken, zucchini, olive oil and salt this morning...and could I add in quinoa for some carbs? I'd like to stick to this for 7-10 days to get most of the dairy and gluten out. Then in a week, assuming DD has a good baseline of behavior, I'll add in a bottle and watch for reactions. Then go from there.

I am fine w/ minor setbacks. What I just can't do is let it repeatedly get to where it was before, over and over.

As far as the 2100 calories...I could eat more. Some random piece of literature they gave me said 1600-1700 is the minimum a nursing mom should have (uh..what?! I'd strave) so I just added on. I never usually count calories, except to make sure I get enough for my weight lifting ambitions and I felt full eating that many calories. I'll up em w/ the olive oil this time.

I'm open to feedback and criticism on the above plan..interestingly, iafter 48 hrs of eating anything I want...my own gut feels like crap, lol. And I have a pretty cast iron gut.

[DeChRi]

I'm doubting my ability to do this. Even if I'm able to identify the allergies, I don't trust my ability to live on a super restrictive diet long term. After a slip up this morning dozing in bed w/ DD and I, half asleep, in total nursing mama intuition, rolled over in our nap and nursed her for all of 2 min before I realized what I was doing and quit. The result is that for the last several hours she has been screaming non-stop, stiff, puking phlem and is all congested again. I absolutely cannot put her through that severe of repeated test runs. Not coming off of the total failure of my last 3 week TED.

I really want her to feel better, and if that happens on the Alimentum, I am not sure I heart to go back and risk doing this to her again.

[mamafish9]

Only you can know what makes most sense for your family. If your daughter is doing well, and you think formula is the best long term choice for her, that's OK!!! You will likely have to deal with trial and error at some point, whether now, or when you start introducing solids for her - but that may be far easier than dealing with it in these sleep deprived early weeks. We're here for you if you want to try the TED - but most of the mamas here have lived through that frustration (not always with satisfying results), so we know it can be a really big hill to climb.

[DeChRi]

Just curious...let's say that we stick w/ formula...in a couple weeks, what is the down side to trying a bottle of regular milk based formula, to see how she reacts? If she flips out, then we can add dairy to the list. Or no?

I'm shooting for TED...today was day 1 or chicken/quinoa/olive oil/salt/zucchini. The screaming was just so heart wrenching for me. Every time I swear I won't do it again. And watching my 2yo sink into some abyss when baby is that way sucks. But I'm trying. I just can't cash it in yet. It's too intuitive to nurse for me.

a general question... Most women I know (through LLL or whatever) whose babies have had BF food sensitivities..by the time they were eating solids they were able to handle them. Is there a difference between a true food allergy vs an inability of the gut to breakdown a certain protein at a certain age?

[mamafish9]

Well, most of the little ones around here have food intolerances that don't disappear by 6mo. It does happen with sensitivities to things like onions in mamas' diet, for example - but I think it's a lot less likely to happen for the biggies like gluten and dairy.

Sounds like you're going to give the TED one more try (are you off supps too?) - I really hope it works for you, I'd love for you to be able to nurse your baby and not have her scream .

One thing you did learn today - she's reacting faster to your breastmilk if there is something really bad for her in it. So that's good, you know you'll get a pretty quick answer. You might try a really small amount next time - a tablespoon of pumped milk in a bottle, or something like that. If that flies (no reaction in a few hours, since it sounds like you got a pretty fast reaction today), then try a little more, wait a few hours again. If that's OK, then try a really short nursing session. But if you get a reaction, hopefully the very small amount will cause less reaction than the several oz she likely got this morning.

Oh, on testing dairy based formula - they add a ton of stuff to formula, so if she flips out, you still won't really know why. Personally, if you have something that works, I'd probably not mess with it. But I know very little about formula .

About your 2yo - can you do your first TED trial on a day next week (or the weekend) when DH or someone else can take your 2yo out for a while? I never timed my food trials very well .

[DeChRi]

Originally Posted by mamafish9

Sounds like you're going to give the TED one more try (are you off supps too?) - I really hope it works for you, I'd love for you to be able to nurse your baby and not have her scream .

Oh, on testing dairy based formula - they add a ton of stuff to formula, so if she flips out, you still won't really know why. Personally, if you have something that works, I'd probably not mess with it. But I know very little about formula .

About your 2yo - can you do your first TED trial on a day next week (or the weekend) when DH or someone else can take your 2yo out for a while? I never timed my food trials very well .

I am off supps. WE tried to go to the football game toinght...I had to make sure I had bottle stuff, dont think I had enough, she was tired then and normally at the game I would nurse her and off to sleep she would go. Anyway, me and the 3 girls bailed before the end of the first quarter. I dont think I can parent without nursing. It is my main source of comforting my child and I am so discouraged and feel like I am missing a huge chunk of my parenting ability. But the task before me seems SO huge. Really depressing. Plus I couldn't have any yummy tailgate food, lol.

I am trying really hard to no fall into the "it's not fair" pity party. My good friend's 10 day old is 30 miles away on heart/lung support and was not expected to make the day. He is holding on, but I bet they would trade anything to have my problems.

I could probably arrange for DD2 to be gone. It's tough because what she reallly wants is just me, ya know?

Another question, the specialist told us....the longer we go on the Alimentum and allowing her gut to recover, the longer it make take for the allergen to re-irritate it. Is that accurate?

[Shanny2032]

Reading these posts has made me want to cry. Limiting my diet so severely (and not nearly as much as you have) was one of the hardest things I have ever done. I just want to say that I really get it and think you are doing an amazing job at weighing all of your options and gathering as much information as you can. I am not expert but has anyone mentioned F.P.I.E.S. to you? My daughter was conceived via anonymous donor sperm and she has a donor sibling that has been diagnosed with this but for the longest time they thought it was food allergies.

[mamafish9]

Originally Posted by DeChRi

Another question, the specialist told us....the longer we go on the Alimentum and allowing her gut to recover, the longer it make take for the allergen to re-irritate it. Is that accurate?

Maybe, particularly with gluten and dairy. But in the experience of folks on this board, I'd say that kind of healing takes months and months, not days or weeks. It seems like you've had pretty quick reactions so far - there are lots of "possible" complications in trying a TED, and you'll go nuts if you worry about all of them .

And I really hope this works for you, I can't imagine parenting without nursing. My sister (after nursing for babes) had a foster baby, and she said it was such a strange and difficult experience to have a fussy babe and not be able to nurse.