Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 8

[PatioGardener]

Originally Posted by lalemma

Mama, you are AMAZING.

I know this isn't going the way you hoped it would (or the way any of us following your story hoped, either) but you are so strong and tough and inspirational. However this works out, you and your baby are going to be okay.

[elanorh]

I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.

again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.

[DeChRi]

Originally Posted by elanorh

I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.

again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.

Oh boy, you are so amazingly committed!

I've thought about this often, and would probably continue pumping as much as possible just in case she eventually shakes whatever ails her.

I also wonder if I commit to keep the Big 8 out for a few months, then nurse her at night when she is peaceful, and formula feed during the day, if that would strike a balance w/ her gut.

Then again, I'm still not at all convinced she is allergic. Once we rule out ENT issues this morning (heading there soon) then I'll take a long hard look at diet/lifestyle/sanity etc and go from there.

I'd love to do something like you did, and amazing job on sticking with your little one.

[jenfl]

Sending good vibes for an informative ENT visit!

[DeChRi]

ENT says normal normal normal. After 36 hrs on pumped brstmilk from bottle she is violently puking up everything she eats, screaming in a horrible way, throwing up phlem, and just miserable. My 2 yo is on total meltdown.

I'm deciding right now that I won't go back to the state things are right now. Had to call DH home from work. Cancelled a 2nd Dr appt I couldn't go to, etc.

I'm going back to formula. I'm going to pump a few times a day. Probably going to stay off of dairy/soy. After awhile I may slip in a night nursing if she wants, and if it causes no harm once a day, down the road. My biggest thing holding me back is thinking....what if she outgrows this at 6 mnths? But I can't do this for 3 more months.

I get right to this "so done" point and feel total relief, then the thought of not nursing her into toddler years, after ouchies happen, during the night, etc...just breaks my heart and I can't help but think there HAS to be another answer.

[HonkyTonka]

just a suggestion if you are in 'look for an answer mode' again, you could contact Jack Newman's breastfeeding clinic: http://www.nbci.ca/index.php?option=...d=62&Itemid=33
and get them on your case. You start by sending a short email describing the problem. Might be worth a shot.

I'm not sure I could do what you've done. So dedicated!

[DeChRi]

I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).

[crunchy_mommy]

That sounds like a great plan.

[frugalmama]

Originally Posted by DeChRi

I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).

Sounds like a plan to me.


If you don't mind me asking - what HAVE you been eating while on the diet? Perhaps your child is allergic to something you're still eating? People can be allergic to anything, even so-called hypoallergenic foods.

[DeChRi]

Frugalmama- plain turkey, yellow/green squash, brown rice, millet, pears & sweet potatos.

[frugalmama]

Originally Posted by DeChRi

Frugalmama- plain turkey, yellow/green squash, brown rice, millet, pears & sweet potatos.

Are those foods you were eating prior to starting the diet? If so are you eating them more or less now?

I know of several people allergic to millet personally and I've heard of allergies to every one of those foods on the kids with food allergies message boards.

For more background - what formula is your child using? Are there any history of auto-immune issues in your family? I know you said Baby E didn't seem to have any stool issues - can you describe stools prior to starting formula and afterward? When Baby E has an attack are there any other symptoms that go with {hard stomach, visible cramping, stiffness, gassy, etc}? What specialists have you seen? - I know ENT was mentioned but didn't catch any others.


Maybe there is something we're missing here. I'd almost wonder if Baby E didn't have EOS {http://www.eosinophilictucson.com/eo...disorders.html} or something similar.

I know this is hard and formula might be the best way to go for your family's sake. My DD nursed for a year and then spent another year on Elecare elemental formula which healed her gut enough that she can now eat regularly most of the time and go out in public without fearing food contact.

[DeChRi]

Are those foods you were eating prior to starting the diet? If so are you eating them more or less now? - I ate turkey, brown rice, sweet potatos and squash...all before, although, of course not in the quantities required when those are the only foods that make up a full caloric intake. So I was eating all of those except millet, prior, but in lesser amounts.

I know of several people allergic to millet personally and I've heard of allergies to every one of those foods on the kids with food allergies message boards. Would you have additional advice, if I gather my sanity and opt for another go at an elimination diet, the most way to structure that?

For more background - what formula is your child using? We have used Similac Alimentum HypoAllergenic, when we do the 48 hours of gut relief for her. This was recommended by the ped we usually see, and also by one of the specialists we say. I am admittedly formula-not-smart, as my first two never had in supplementation in 6.5 yrs of nursing.

Are there any history of auto-immune issues in your family? None at all, on either side.

I know you said Baby E didn't seem to have any stool issues - can you describe stools prior to starting formula and afterward?
Let me clarify the amount of formula she has had, so this makes sense. She had no formula until a month ago (10 wks of age). Her stools were yellow, seedy, identical to the stools my other two always had...although by the time we went to formula the first time at 10 wks, they were 4-7days apart. Our normal ped said "normal", but the Dr we say that specialized in breastfeeding allergies said not. We have done 3 spurts of 48 hrs on formula, as well as some random bottles of formula. When I started the elimination diet I would nurse until the physical symptoms got so bad, we would do 48 hr again on the formula to help heal her gut. Her stools since starting formula had been a thicker, smoother, greenish/brown and super stinky. She never has any trouble passing them. The stools threw me a bit, from the allergy side, because I would think that if she was as violently miserable as she was, for so long, that her stools would have been messed up.???

When Baby E has an attack are there any other symptoms that go with {hard stomach, visible cramping, stiffness, gassy, etc}? Gas, gas, gas, hard stomach, visible cramping, stiffness, screaming...hours of those wide eyes, stiff as board, ragin screams. And when not screaming, she was being held in a million positions, bouncing, moving, binkying, etc... And before I started eliminating/supplementing, she spent weeks like this...in journaling the hours a day she spent screaming, writhing, miserable, we are talking 14-18 hours/days. It was really bad. The first 48 hr we did on formula was a total turn around. 98% symptom resolution, that fast.

What specialists have you seen? - I know ENT was mentioned but didn't catch any others. We started seeing our normal Dr, then moved on to the LLL folks her, as well as the hospital LCs. From there we went to Nebraska to a pediatrician that is also an LC and her specialty is allergies in breastfed babies. Next stop was the ENT. Not sure where to go now.


Maybe there is something we're missing here I feel like there is. It just does not make sense to me, that 3 weeks of that clean of eating (one screw up consisting of 2 bites of a protein bar...otherwise, totally clean), then I start breastmilk again and within 24 hours she was violently sick, screaming, and miserable again.

I'd almost wonder if Baby E didn't have EOS {http://www.eosinophilictucson.com/eo...disorders.html} or something similar. I'll read on this.

I know this is hard and formula might be the best way to go for your family's sake. For the next many days, it is for sure. Everyone needs some healing in this house, lol. I keep hoping that somehow it will play out well.

I am open to any suggestions at all, recommendations, ideas. Thank you.

[frugalmama]

hmmm....with her tolerating that particular formula it's not likely to be EOS {that almost always requires an elemental formula}. You do mention it's 98% better - are there still any symptoms on formula?

She sounds EXACTLY like my DD with her allergic colitis - her trigger is oats. Right down to the not going often enough. Have you given her mylicon {baby gas-x} when she is having an attack? I found that given in high doses it often stops / lessens my DD's colitis even when she accidentally gets into oats. I also found that warmth and not moving helped her as well - I used to wrap a thermacare with a thick kitchen towel and gently use it like a heating pad on her tummy. Have you tried giving probiotics?

I would say it's likely one of the foods you're eating - my gut instinct says either brown rice, turkey, or the squashes. Those are all still pretty high up on the Allergen scale {http://www.allergynutrition.com/reso...%20Allergy.pdf - you want page 4}. Could you substitute the brown rice with Quinoa which is lower on the scale?

I'd play with the diet a little - maybe sub the rice with quinoa, turkey with either chicken or beef {if you have access to wild game I'd choose that as it's better yet}, and the squashes / sweet potatoes with turnips / parsnips / carrots. I would do one substitution at a time for a week each - within a week you should be able to see some improvement if it is allergy.

Just to check to cover all the bases - are you cooking your meals in common with other items you're NOT eating? Using condiments? Spices?

As for Doctors - I'd try a pedi GI next if you can.

[DeChRi]

Replying from phone so I hope I don't miss something...
I'm happy to sub out anything. We have full access to local, free range bison(freezer full) and family hunted venison I could get my hands on. As far as prep...same pans, same everything, absolutely no spices, herbs, condiments other than a bit of sea salt. I've done the high doses of Mylecon with no luck. She does like a warm bath. After 48hr on formula I notice no symptoms...just some passing of gas that I think is normal as it doesn't bother her at all.

Questions...if we only ate brown rice/turkey/squash say, once every 10-14 days prior to Elin diet...could those still be the cause?? And she has been on probiotics for a few weeks now.

I had a huge, awesome, ellergenic meal last night, after 3 wks of turkey/squash/millet, then I slept and decided to punt pumping for 6 hrs. So after pumping 12 oz this morning, I feel a like more settled.

I could go one more round on the Elim diet. What I can't do is try and nurse her a bunch during that time. Even if that means at the end of 3 weeks she gets BM from a bottle vs breast. Family needs the peace, as does she. I have a decent stamina for my own diet/sanity, but that crashes when the fam falls apart.

[elanorh]

Quinoa is a higher-protein option for your diet, too, and I know you ate a high protein diet prior to having to crash into this elimination diet.

Another possibility is a mitochondrial disorder; I have a friend whose ds was thought to have reflux/allergies/EOS -- and finally was diagnosed with a mitochondrial disorder. But your other children were fine, and I think that makes a mito case less likely.

I would wait longer than a week to try nursing/breastmilk again. I know it's difficult and I so missed nursing while I was on my month-long hiatus - but if her gut is really damaged, it might take that long to really be healed enough to try breastmilk again. I'd rather pump a little longer, than reintroduce too soon and be set-back again..... Give it as long as you can (up to a month) if at all possible. At least three weeks? One of the things our Ped was watching for was sustained weight gain. DD1 gained 1 pound in a day (three days into the Neocate) and then followed a nice curve for weight gain after that, gradually building up to the point where the Ped felt comfortable that she had enough 'stored' to handle the stress of a failed intro (again, while your little one's weight is less an issue than my then-off-the-charts wee one, possibly this is less an issue).

Make sure you label your milk as you freeze it and keep a detailed food journal. That way you can cross-reference and make sure you're giving 'good' milk (for instance if you discover that it is the millet which is the issue, you can push those bags of milk to the end of your stash, in hopes that it's outgrown by the time you want to use them).

It's very curious that the stools aren't looking 'allergic.' Have they tested the stools for blood? DD1's were green, snotty/mucousy, and had visible and microscopic blood. Once she was 100% on Neocate, about 1 week into it, she had tons of little black flecks in her stool for a few days and then it was gone - I suspect that's when her system was really beginning to heal up (scabs, for lack of a better description?).....

Another suggestion for you is to check out the Food Allergies board here. While this may end up being something other than allergies - the moms there have quite a lot of experience with breastfeeding and elimination diets, etc. I didn't know about Mothering when I was dealing with this with dd1, but the support boards I did find were so helpful, whether it was pumping, supply, diet, or simply support from someone who didn't think I was NUTS.

[D_McG]

Originally Posted by elanorh

I would wait longer than a week to try nursing/breastmilk again.

ITA with this. With a reaction that severe I don't think you're doing anyone any favors by going back and forth with such frequency. I would do ALL elemental formula for a prolonged period. Let her heal. And when she's more mature you can retry (either bf'ing or a 'regular' formula if you choose not to continue pumping. Which is 150% understandable under the circumstances).

[DeChRi]

Good advice, thank you. A couple questions...

I think I've decided to keep pumping, but just don't think I have it in me to keep up w/ the 8-10x/day. What's the minimum I could pump, maintain some kind of supply, knowing that it may mean some supplementation long term and I'm okay w/ that? Even if I could breastfeed 2-3x day forever, I'd be happy at this point. Can I pump 4-5x a day and still maintain some kind of supply?

Also, I've decided to go just elemental formula for the next month. Should I try to do another 3-4 wk TED? I'm not sure I have that in me. If I want a crack at nursing again in a month, what do I need to do diet wise to make that happen?

[DeChRi]

I meant to add in the last post...we did have labs done on a stool sample, but no signs of blood. This throws me off. When we spent 6 weeks logging her hours of crying, it was literally 10-16hrs/day, and the rest was dozing off and really agitated. For her to be THAT miserable from food allergy, wouldn't you think her stools would be afffected?
Anyway, I feel more sane after a couple good meals,a nap, coffee w/ a little half and half, and a bottle of white wine in the fridge.

So I think I have one more go in me, from a diet standpoint. I love quinoa, so thatd be great. I do need a meat because it's very important to me to keep my protein intake very high.

I just need to figure out how to structure the diet.

[crunchy_mommy]

I think if it were me I would give myself a good week or so to go back to eating whatever I wanted. It sounds like you need a break & I think it would be good for you to just live normally, with a happy baby & a normal diet, for a week or two. If you did this, you'd still have about 3 weeks for all of it to clear out of your system before you try nursing her again.

I agree that it doesn't sound like a typical allergy, particularly from the lack of stool issues. I'm very curious about what is truly causing her problems (and hopeful for you that you are able to pin it down!)

[DeChRi]

After 36hrs back on formula, she smiling, cooing, trying to roll over, and the family is peaceful. She had one screaming episode earlier while trying to pass some gas, and hurling all over, and lemme say...I don't know if I can out her through another trial and error.