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Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 9

post #161 of 198
big hugs! i think if you're pumping 6 times a day you should be able to maintain some sort of supply, but i don't know if i'd drop down to 4.. i would definitely expand your diet but not include the major allergens. the bison sounds like a wonderful option!

i'd also stick with the formula for at least 2 weeks before trying mama milk again.. if it's working, there's something good going on. everybody needs some time to heal and rest. take this time. *hugs*
post #162 of 198
Quote:
Originally Posted by DeChRi View Post
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.
her or you! I did dairy, soy and eggs and it was enough. I'm so glad she's doing well. I hope you and your family and enjoy her even more now!
post #163 of 198
Thread Starter 
I really appreciate everyone sticking with me for 9 pages here. I'm going to spend some time on the Allergy forum and decide where to go from here. For now I am eating, she is on the elemental formula for 3-4 weeks, and I am pumping about 20-30oz, over 6 or so sessions, each day. I have decided to give up the night pumpings from now. I pump at about 11pm, then again at 6am. She is not a big night time eater anyway, so I will add that back in later if needed.

I am curious to see how she handles more than 48 hrs on the formula. I am curious to see how my supply hangs in over the next couple weeks. I think I will muster the umph to cut out the Big 8 for 3 weeks, starting in a few days. Right now, I am just enjoying the ride for a few days.
post #164 of 198
you are truly inspirational.
post #165 of 198
Thread Starter 
Quote:
Originally Posted by LadyCatherine185 View Post
you are truly inspirational.
Thank you.

This is so much harder than I thought. I am a very pragmatic person. Logic tells me that if she is miserable and my family is miserable and my health is taking a hit, then formula is the answer. And it will be okay. And she will be okay.

But boy, after nursing 2 babies until they weaned themselves, it is SOO hard to make that call. I just cant pull the trigger. Not without answers. If I KNEW what was wrong, then maybe, but not knowing is killing me.

My hope is that we hold on, keeping the sanity and trying one thing on another...until one day she just outgrows it.

Other times I think i am nuts and should just punt the whole thing. Right now, all I wanna do is curl up and nurse her, and having milk that makes her sick is so tough.
post #166 of 198


Yes, when I was struggling so with my dd1, I hadn't experienced nursing an older babe or toddler, so even though I was scared and devastated, I had no context for how impactful switching to formula permanently, would be.

That said - if you do end up having a failed challenge when you try to re-initiate, there's always "bottle nursing," which may work well on some levels to help provide that intimacy. My sister who adopted did this with her adopted child (and went on to nurse subsequent children).

What we told ourselves, during the month we were exclusively pumping while giving Ina Neocate, was, "Well, we just need to make it to the end of this month, and see what happens." We set that as a goal and didn't think about what ifs beyond that. If she had failed that reintroduction, I think we would have gone back to Neocate and left it at that (but who knows, maybe I would have kept pumping at least a little, I don't know, it was such a dark dark time for me)..... I do wish I had taken a week off and eaten whatever I wanted at the very beginning of that month - my favorite pizza place closed down while I was on my Elimination Diet.

In terms of how frequently to pump - focus on how much you're getting, if you see a dip, increase duration or timing of it. One of the women I knew while we were going through all our nursing struggles was an EP'er - she had low supply issues initially and worked and worked on it, and by the time her ds was about 10 months of age, she was pumping ONCE a day, and getting 35 oz. !!! Talk about good storage capacity. I do not recommend this - not all women would be able to do that, for certain! I know my supply would tank if I were only pumping once a day! But you may find that you're still able to produce as much with 5-6 pumpings, KWIM?

Good luck with everything.

ETA: I'm really baffled by this -- how weird that there's no blood in the stool with all the other symptoms!? Have you been taking probiotics yourself since this saga began?
post #167 of 198
I looked up the ingredients of your HA formula and noticed that it doesn't contain any lactose. Babies are supposed to produce lactase but occasionally they don't, or don't produce enough - I searched this thread for a mention of you trying lactase drops (I thought you'd said you did?) but couldn't find it... sorry if this is rehashing, but lack of complete lactose digestion would cause all the same gassy/pain symptoms as a protein allergy but probably wouldn't result in blood in the stool. It could also result in merely slightly low weight gain. This seems almost TOO simple and given the number of specialists you saw I doubt it hasn't been suggested but I figured I'd post just in case. But you did try it, didn't you? I think the search feature is screwy.
post #168 of 198
Quote:
Originally Posted by spughy View Post
I looked up the ingredients of your HA formula and noticed that it doesn't contain any lactose. Babies are supposed to produce lactase but occasionally they don't, or don't produce enough - I searched this thread for a mention of you trying lactase drops (I thought you'd said you did?) but couldn't find it... sorry if this is rehashing, but lack of complete lactase digestion would cause all the same gassy/pain symptoms as a protein allergy but probably wouldn't result in blood in the stool. It could also result in merely slightly low weight gain. This seems almost TOO simple and given the number of specialists you saw I doubt it hasn't been suggested but I figured I'd post just in case. But you did try it, didn't you? I think the search feature is screwy.
i could have written this post!

switching to non elemental formula (with lactose) might tell you something...
post #169 of 198
Thread Starter 
Nope! I have never even heard of it. I will research when kids go down. But this would be in line w/ the elemental formula not making her cry, but the breastmilk causing pain?
post #170 of 198
I could be wrong, but I think elemental formulas are lactose-free.
post #171 of 198
Does she have tongue tie? Have you looked into the detoxification issues?
post #172 of 198
Thread Starter 
She does not have a tongue tie. We've had her assessed by an ENT. Do you mind elaborating on the detox issues?

Thanks
post #173 of 198
You're using the Similac HA formula right? It is definitely lactose-free. I believe it uses glucose and sucrose.

Undigested lactose would cause a LOT of gas (by-product of fermentation by normal gut bacteria - basically the lactose would fuel an overgrowth of otherwise beneficial bacteria, the gas is mostly carbon dioxide which is harmless, but creates pressure in the intestines and colon.) Since she is gaining reasonably, she is obviously digesting some lactose (which breaks down into simpler carbohydrates via lactase, and is then absorbed into the bloodstream as glucose, which the body can use directly for energy). My bet is that she is simply not digesting ALL the lactose - she has a lactase deficiency. This would not cause gut damage per se, I don't think, only some inflammation and pain from pressure.

You can buy OTC lactase drops, I believe. They do sell them for infants because lactase deficiency, while relatively rare, does occasionally occur. Some people (and websites, unfortunately) attribute colic to lactase deficiency (and sell liquid lactase enzymes) but technically if it has a cause, it's not colic.

Here is an article on it. Your baby definitely exhibits some, but not all of the symptoms - if this is the problem, it is not as severe as in some babies. When you feel up to it, you could test it out by getting some lactase in liquid form specifically for infants, adding it to your pumped milk, and giving her a bottle. If that works, you could resume nursing her but you'd always have to give her the enzyme mixed with your milk before you nurse, and because this is a congenital condition, she would not outgrow it and would not be able to tolerate dairy products later in life. Also, I may be wrong about this, but I recall hearing something about whether taking lactase orally is entirely effective, since it is supposed to be produced in the gut and it may not remain active after passing through the stomach? I am not sure about that, but if so, lactase might represent an *improvement* but not an all-out fix like the HA formula.
post #174 of 198
This is triggering some faint memories in my brain...isn't a lactase deficiency one of the congenital defects screened for in the newborn screen? Did baby have the typical newborn screen, mama? Maybe look up what your state covers in the screen (because some states differ slightly) And while we're on the topic of newborn screen, it might be worth doing it again (or for the first time if she didn't have one) because there are other congenital disorders that could potentially cause some similar issues. Does her current formula have phenylalanine in it? I actually knew a baby who was not diagnosed as having PKU until she was 3 months old (long story with a screw up with her newborn screen) and she exhibited severe colic-like symptoms with no obvious reflux, no bloody stool, no response to mom eliminating foods, etc.

Yes, the more I think of it...re-do her newborn screen.
post #175 of 198
I'd go for having the newborn screen re-done as well - might even be worth ordering a full metabolic panel to check for other disorders as well.

Celiac comes to mind as well - it can cause a secondary lactase deficiency that lasts a while until the gut heals. I don't know how that would work in an infant though.

How old is she again? Has she ever been given solids?
post #176 of 198
Thread Starter 
Taking this all in, thanks. She did have newborn screenings done but we can do them again. I am back on Elim diet now in hope to at least have "clean" milk for whatever comes next.

She is 15 weeks today. Never had solids. The decline started around 4 weeks with what initially we thoughts was oversupply/overactive letdown.
post #177 of 198

Breastfeeding and Formula

Lots of hugs to you also.

I know you are probably looking for a solution to the problem, but I've noticed with all my kids the first step to solve any problem is to relax. They all start relaxing once I have. So, don't worry. Then, maybe put your baby in a wrap or carrier next to you and go for a walk. Get some fresh air and the baby some too.
My little girl is 6 mo. now and since birth will be very cranky all day unless she gets a walk outside in the baby carrier.
There's lots of things you can do to "fix" things, but loving your little one and being patient through it all is what will help the most. Use your instincts as to what you think is best and follow your baby's cues.

Mother of 4, wife of ak state trooper, :violi n
post #178 of 198
Regarding pumping, I was able to get down to 4 sessions a day (rented hosital pump), & still make 30+ oz (I was on Domperidone too though); my 2nd DD had severe reflux issues (was on Prilosec, which helped - since 5 weeks), but from 4-5 months gained 0 oz due to not wanting to nurse much/transfer well (lots of arching & screaming all along), which lowered my supply, which made less available... I ended up feeding some formula for a month while I brought my supply up from the measly 13-14 oz a day I started out pumping then (around 8x +, to build supply). Nursing - she was evaluated for issues, but just wasn't taking much at a time, so maybe there were transfer issues they didn't find? I ended up EPing for 10 months & bottle feeding her. It worked, my kid grew, & I'd have stuck with the formula if that had been the only thing that worked. I had no issues nursing my 1st DD.

So it sounds like you are an amazing mom who has tried all kinds of things - I relate my experience, to show one experience where supply was down, then was brought back up, & a baby who just couldn't nurse well for whatever reason was able to get back on breast milk, even if not direct from the source. So by pumping for a while longer, you are keeping your options open.
post #179 of 198
Thread Starter 
Thank you for the advice and personal story. I am treasuring nighttime, as for whatever reason, baby E is never crying at night. I strip her down, cuddle her in next to me, and she is perfectly peaceful until she pokes around to eat. DH has most of today & tomorrow off (he's a realtor, so may have a random showing or something, but no office work) and I plan on not only having baby time, but also leaving baby w/ him and getting out solo with my 2 yo and 11 yo.

Pumping is going okay. I'm getting 20-30oz daily. I've found w/ DD2 (I pumped while working then) I can manipulate my supply pretty well, so I'm not sweating it too much. I'm getting 5-8 short sessions daily. On weekends when DH is here I try and do some cluster pumping.

Want to know my biggest fear? Not being able to figure out what it is, staying with formula because it doesn't make her sick, then later finding out it was something that I didn't need to quit nursing over. I'd be able to live w/ formula IF I knew why I was making that choice. If she is allergic to dairy/eggs/gluten/soy and let's say some other stuff...I'm not sure how long I could keep that up. But even then, if I ended up choosing to formula feed, I'd feel like I made an educated decision. Not knowing makes me feel like I'm giving her narcotics for pain because it kills the pain, but never addressing what is causing the pain. Does that make sense?
post #180 of 198
Quote:
Originally Posted by DeChRi View Post
Want to know my biggest fear? Not being able to figure out what it is, staying with formula because it doesn't make her sick, then later finding out it was something that I didn't need to quit nursing over. I'd be able to live w/ formula IF I knew why I was making that choice. If she is allergic to dairy/eggs/gluten/soy and let's say some other stuff...I'm not sure how long I could keep that up. But even then, if I ended up choosing to formula feed, I'd feel like I made an educated decision. Not knowing makes me feel like I'm giving her narcotics for pain because it kills the pain, but never addressing what is causing the pain. Does that make sense?
But if your child was in the hospital writhing in pain, you wouldn't hold off on the narcotics just because you didn't know the cause, right? You don't need to make any permanent decisions now -- you just need to ease the pain you & your DD & your family are going through. Once the pain is under control, then you will be better able to consider the cause.

I totally get your concerns though, & I truly hope you are able to pinpoint exactly what the issue is.
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