Please help with next steps - breastfeeding at major risk - Page 3

[mamafish9]

Originally Posted by DeChRi

since she is alread upset, i'm considering doing a couple day trial of soy formula. i know the crossover of dairy allergic and soy allergic is large, but if she is the same on soy as on HA, then we can at least save on formula while we figure it out. And if she declines even more, we can draw other conclusions. And maybe, by the grace of all things, she will just be dairy intolerant and she will be miracle cured. Since I am no longer going to set her off, since she already is, may as well try.

Or she could be reacting to the soy in the alimentum. I *believe* that an allergist can write you a prescription for Neocate, and then it is covered by insurance - can you call and say she's reacting to the alimentum and see if they will call in a Neocate prescription for you, if you're going to try a formula experiment?

[DeChRi]

We could probably get our hands on some Neocate. The "allergy specialist" we see is an MD (pediatrics) and LC, but specializes in breastfeeding allergies. I know she can call it in but she has a small private clinic with no after hours call. However, our GP is a good friend and she'd call it in.

[mamafish9]

Guessing it would be more likely to improve the situation, without increasing your costs ridiculously.

On the probiotics - Klaire Lab's are truly dairy free (not grown on dairy medium ) - but they do have inulin, which causes huge issues for some kids. For my son, he tolerates it for about a week, then things start to go downhill.

So if those are the probiotics that you were on the last 10 days of your TED, I'd say it's likely dairy isn't the only culprit, but it could have been the inulin.

[DeChRi]

Mamafish, one more thought...part of me thinks this not food allergy @ all...the way she is so peaceful during the night, the lack of wonky stools, etc. Part of me thinks that trying a day or two on full blown normal formula will give us a blinding Yes, she is allergenic. So my question...IF it is a condition that is non-allergy based & we try Neocate and she is happy...could it be that its a different condition & the Neocate just works with that vs telling us she is allergenic?

Does that make sense? I feel like going straight to an obvious allergen will tell us point blank that an allergy is the problem or part of the problem.

I don't know if that is reasonable, as it's all turning kind of gooblygook in my brain at this point. I just want to give her SOMETHInG to make it stop.

Today is day 3 of TED again, so we're working on that.

[DeChRi]

And thank you for talking through all of this with me.

[mamafish9]

It's possible something else is going on. But food intolerance is the most likely culprit, so I'd work to rule that out first. The problem with the formulas is that there's no way to challenge just ONE ingredient. Take the alimentum - if she's reacting to something in that, is it the - corn, soy, small dairy proteins, safflower oil.... you get the idea. Even if you introduce milk based formula, or soy, she may react to some other ingredient. That's why we try to food challenge with individual ingredients. It's like when my son eats chocolate muffin at a party and reacts - so many possible issues, it's hard to isolate the problem.

So I wouldn't use different formulas to try to identify allergens/intolerances. I'd just change in an attempt to make her happier. I hear your huge desire just to have this fixed, and I totally empathize, but odds are this is going to be a bit of a process to figure out, whether you nurse or go to neocate, or whatever. Silver bullets happen occasionally, but oftentimes it is a hard, frustrating, and sometimes miserable process, especially when you have a little one reacting

[mamafish9]

Originally Posted by DeChRi

And thank you for talking through all of this with me.

Happy to help in any way I can - my son was older when I did my TED, but it was an incredibly difficult time, and the mamas on this board were my lifeline!

[DeChRi]

That makes sense. I'll call our GP tomorrow to catch her up and get a script. DH has been friends w/ her for 15 yrs and he hubby since childhood (they also work together), and while she thinks different about things than we do, she's very supportive & will call in some Neocate for us. She kind of knows this is out of her realm, but does feel a duty to help us make DD3 comfy while we chase it down.

[mamafish9]

It's always good to have a supportive GP you can call! If the Alimentum no longer works, Neocate is usually the next step, formula wise. Hopefully it will help your daughter to a happier place - it's really hard to work out a plan, or be patient and wait for next steps, when you have a screaming, miserable babe.

[DeChRi]

Does insurance usually cover Neocate? We'll do it regardless, but just curious. Beyond that I think my plan is to keep on the TED and slowly test out small amounts a week from now. BUT if the Neocate doesn't help much, or our GP recommends, we'll probably make an appt w/ the ped gi dr.

[Lady Lilya]

When I was reading about your restricted diets, I was wondering what the turkey was fed, and what the lamb was fed, etc.

I have a friend who is very sensitive to certain grains, and has an issue with meats if the animals were fed those grains.

[mamafish9]

I believe you can buy Neocate without prescription, but if you want insurance to cover it, you generally need the script. Calling your insurance might be one way to find out, but if it's easy to get a script, I'd just go that route, and take that in to the pharmacy.

[elanorh]

Coverage of the elemental formulas by insurance varies by state. My state doesn't mandate coverage of it, therefore they're not covered. While debating this on the phone with the insurance company, I told the lady, "Look, this food is medically necessary and available by prescription only. If I don't give it to her, and give her the H/A formula she reacts to instead, she requires hospitalization, IV, etc. etc. - you'll cover that though, right?" And, yes, they would cover that. Ugh.

Definitely keep up the TED while contemplating the Neocate. Back when dd1 was on Neocate, it cost us $36 every other day. That adds up really quickly; if this is just a "gut healing" situation and you only need to do elemental formula for a month or so, that would save you SO much money (not to mention achieving your goal of being able to continue to breastfeed, for all its tangible and intangible benefits!).

Pay attention to the mixing instructions for the Neocate; it's different than other formulas.

And, it's already been said, but obviously the Hypo formulas don't work for all babies; 10% will not be able to tolerate even those "Hypo" formulas - dd1 was one of those kiddos. I suspect that dd2 would have been one of those kiddos too, as she reacted to a body wash whose ingredients changed to include dairy derivatives - something I didn't even ingest!

I still think it's curious that there's no stool sign at all - and think it's a good idea to see about re-screening the newborn tests to see if something turns up there.



I am really hoping that moving to an elemental formula will help while you're continuing to pump and hope to return to nursing. You are narrowing options down, even though I know you really want answers NOW NOW NOW (that's natural) - every time you realize something's not working you are getting closer to finding what WILL work.

[DeChRi]

Thanks for the heads up on the different mixing instruction for the Neocate!

Elanorh - as dorky as it sounds, even spending days working through a "right now" fix, helps keep me focused during this TED, which is harder for me this time. Just one more day, kind of thing.

For the moment, my parents & DH are home w/ the 3 girls and I'm waiting for a massage! :-)

[karika]

foodlab

Hi! Glad to hear you are getting some pampering. I know you are pumping to keep your supply. I am wondering if you are donating the milk to a bank? This is one of those perfect opportunities to do so, and it is easy. Also I am reading a lot about TED. This is a very hard thing to do, a TED. Part of the problem would be that you are eating more of those few foods you are ingesting, and what if one of those is the offender? This group was highly recommended to me in help sorting out our food issues, http://health.groups.yahoo.com/group/foodlab/ They really know a lot... like that citric acid is grown on corn, and vanilla has corn in it... the hidden things... anyway, I was reading messages today and thought of you and that it may help you also.

[DeChRi]

Karika, thanks for that resource! As far as donating, I have not yet, but have been saving it. We have a good friend w/ a baby in the NICU in critical condition. His has a condition that affects his gastrointestional system and I agreed to save my milk until we knew in his mama would be able to pump adequately. Looks like she will, so I did just contact the only milk bank close, about donating.

We are seeing our GP @ 11am today to touch base, get any referrals/scripts we may need, and check over E's general health at this point. I really like our Dr, as we're dear friends, but it's always a little uphill climb as she doesn't "Get" the details of BF-ing. She nursed her kids exclusively for 6 months and additionally with food until a year and then on w/ life. She is supportive, but just not armed with info, ya know? That being said, she will respect whatever we feel the next step is, and will offer all of her 2 cents as well.

I'll update then!

[DeChRi]

Saw Dr. She was great. Baby E screamed the whole time.

She is referring us to the Ped GI specialist. Waiting to find out when she can get in. They prescribed Neocate (not covered by insurance) in the meantime, which the pharmacy ordered. In 5 days into a new TED and am trying to get DH on boarded w/ ditching everything for nursing the next couple days, before we start a battery of tests.

[eclipse]

I'm sorry she's still screaming (and that insurance won't cover the Neocate ), but I'm glad you got the referral. Hopefully the Neocate will help. I've heard it tastes pretty bad , so hopefully getting her to drink it won't be a problem. Also, have you looked into WIC? If there's any way you qualify for it, if you end up using Neocate for an extended amount of time, that could help with the cost.

[DeChRi]

First appt is October 21. Talk about deflated sails! I guess that gives me more time to play with foods in hopes of fixing the situation prior to appt.

The Dr here did a blood draw this morning and is going rule out some things, and would like to do an abdominal xray to do the same. If anything comes up she can fast track us into the GI.

I hope she takes the Neocate ok, and that it gives her relief while I figure this out. Supply is still decent, even cutting nighttime pumpings. Getting 20-30oz daily, with just 8-10min sessions.

We are above the income level for WIC. We're blessed that we can pay for the formula, but it'll just be quite the budget hit. We pay nearly $1000 for good health insurance for our family, as DH is self employed...just makes me crabby when things aren't covered.

[DeChRi]

I'm nursing my baby. I'm so tired of pumping. Formula isn't making her happy and they had to order Neocate, and my diet's been clean for 5 days and dangit, if she's gonna be upset she can be upset nursing. And I just HAVE to trial it again before agreeing to more tests, pokes, kazillion dollar formula, etc.
That and because my gut just says nurse your baby for the next 24 hrs. So I did and she isn't screaming, 3 hrs later. Not sure if the bottom is about to fall out, but it's really nice either way.