Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 10

[maddymama]

HI Mama,
I understand your concern, but consider re-lactation as a possibility. It might take you some time to rebuild your supply up, but it is possible. I'd talk to your LC about that possibility once you get this whole thing figured out.......
~maddymama

[DeChRi]

Setback

I cross-posted this info on my TED thread in the Allergy forum as well.

She's on the HA formula now, has been for a few days w/ one 2min nursing that wreaked havoc, 2+ days ago. Starting about 6pm last night she started a slow decline that resulted in a couple hour of screaming last night, in obvious pain, and has been at it for 3 hrs now this morning. Getting worse and not better.

Totally devasted.

[PatioGardener]

Originally Posted by DeChRi

I cross-posted this info on my TED thread in the Allergy forum as well.

She's on the HA formula now, has been for a few days w/ one 2min nursing that wreaked havoc, 2+ days ago. Starting about 6pm last night she started a slow decline that resulted in a couple hour of screaming last night, in obvious pain, and has been at it for 3 hrs now this morning. Getting worse and not better.

Totally devasted.

Oh Mama, I am just so distraught for you and your little one. I hope that you can find the answers soon. As much as I am pulling for you guys to be able to nurse, I was so relieved to hear that you had found a formula that took away her pain. Now that is no longer working I can't imagine your distress.

Has she seen a pediatric GI specialist? That may be a next step to consider. I hope you can get to the bottom of this soon.

Sending positive thoughts your way.

[DeChRi]

The Children's Hospital 45 min from here has a Ped GI dept. That will for sure be our next stop. The next 24 hour will be the decider on whether we try and ER it this weekend, or get a fast appt.

[spughy]

I hope you can get your sweet baby some help.

[DeChRi]

My wonderfully supportive parents came up for the night. Dad is outside walking around w/ baby, DH is downstairs playing w/ 2yo and Mom is hanging out w/ 11yo. I'm gonna shower! DH even scheduled me a massage in the morning.

[ktgrok]

make sure you give her some gripe water!

[arianascrunchymama]

oh mama... I cannot even begin to fathom what is going on in your heart right now. I agree with the other posters who suggested that it is not a diet thing. The perfect poos are confusing for sure! I had OAL and OS that caused lots of frothy green poos, lots of gas, screaming, and never sleeping for more than 1 hr at a time ANYWHERE.

My first guess would be that any stress she experienced at the breast has stuck with her- hence her resistance. The fact that she screams and cries an hour afterwards is strange. We're not getting deep enough here. Where's Dr House when you need him??

A visit to the GI will be very beneficial. I wonder if your breastmilk has excess casein (the harder to digest fat)? It may be worth it to have your breastmilk tested. Or I'm thinking by the time it takes for her to be adversley effected it has to be something with her small intestine. Maybe a weak sphincter at the beginning of her small instestine is causing less than ideally digested breastmilk leak in?

You are beyond strong- physically and emotionally- and we should all use you as an example of drive and determination.

[HonkyTonka]

any updates mama?

[DeChRi]

First off, thank you all sooo much for the kind words and support. Honestly, if it wasn't for being able to come here, I probably would have thrown in the towel. People IRL are dumbfounded that I am still trying to breastfeed etc.

I had started a TED thread in the Allergies forum and upated there...I'll link below, but the long and short is:
She started reaction to the Alimentum after 48 hrs on it (which historically was the longest we had done at a time). We went back to our regular Dr yesterday. They did blood work, repeat newborn screenings and an abdominal xray and we will get those results tomorrow. We have an appt with the Ped GI Dr in freaking October (end of) because she is not malnourished and isnt critical enough. IF something comes back on the blood work or xray, or if she declines further, they will see us sooner. I tried telling them she is only normal weight because I spend hours a day trying to get 1 oz down her at a time as she never cares to eat much since she is always in pain. But whatever. Our Dr said lets get these tests back and we'll find a way to get in sooner.

In the meantime she prescribed Neocate, which I too to the pharmacy yesterday and they had to order it. Since I had a day to wait, and she was pretty crabby in general, and since I was 6 days into a new TED, I decided to nurse her exclusively for the last 20 hours or so. Went fine, she woke up a little congested this morning, the it quickly went downhill...hurling phlem, really congested, red eyes, and then the screaming/writhing about kicked in. Way worse the the reaction she got after the 48 hr on the Alimentum. DH just dropped the Neocate off, and she is sleeping on me right now, so I think I will try to go that route when she wakes. I hate hate hate going back to a bottle and pumping and stuff after such a nice day and night of nursing. Totally breaks my heart.

Our insurance doesn't cover the Neocate, which is $50 for a 2.5 day supply. Ouch. We pay freaking $1000/month for good group insurance (DH selfemployed) and it doesnt cover it since Kansas doesnt mandate it. Bah.

So my plan....give her Neocate and see if she is blissfull happy. Keep on this new TED and every 3-4 days try and nurse her a few times and see what happens. I'm going to keep pumping in the meantime and contacted a milk bank to see about donating. If anything comes up on the tests tomorrow, we'll go from there.

Here is the link to the other thread for updates: http://www.mothering.com/discussions...1258765&page=2

And here is a pic of baby E, who despite it all, had just found her thumb.
http://www.mothering.com/discussions...pictureid=1822

[frugalmama]

If you qualify for WIC they will cover Neocate or Elecare {other company, same formula}. Some states allow for hardship cases on WIC when the income is too high. Hit up your pedi for samples too - they can call the company and get x many cans per month free for samples as well. If you don't qualify for WIC, try ebay - I personally bought cases of Elecare off there with no issues and many people buy neocate as well.

My dd did 13 months on Elecare, all covered by WIC thankfully.

[LadyCatherine185]

I am wondering since she reacted to the Alumentum, if it maybe isn't an allergy after all? Something physical causing her pain?

[jenfl]

Mama, you're doing amazingly. It feels weird to say this, but I hope the tests come back with something -- at least you'll know what you're dealing with.

It's so unfortunate that the peds GI can't see you for so long. I know how that is -- my son was tongue tied and I NEEDED him to be seen before his bad technique became a habit. What I did was call the office nearly every day at around 10am to see if there were any cancellations. I finally managed to get in early. I can't guarentee it will help, but it might be worth a shot. Or maybe your doc can make contact with their office -- she might be able to speak directly to one of the GI docs and appeal to him.

[frugalmama]

Had another thought - try asking about your insurance situation on the KidsWithFoodAllergies message board - they are whiz's at getting elemental formulas approved by insurance. Sometimes it's something little like it can't be through a pharmacy but can be though a medical equipment company, has to be appealed, etc.

They might also be a good place to lay out all the info about your DD and see what they think as most are seasoned allergy moms with kids on elemental formula and multiple food allergies.

[D_McG]

Originally Posted by LadyCatherine185

I am wondering since she reacted to the Alumentum, if it maybe isn't an allergy after all? Something physical causing her pain?

it's not uncommon for severely allergic children to only be able to tolerate neocate. That is amino acid-only formula as opposed to alimentum where the proteins are just broken down.

To the OP. what is your GI saying re: repeatedly trying the breastmilk? I wonder if an extended neotcate/elecare treatment is a better idea just to let the gut heal? 3, 4 days isn't long enough for your milk to recover or her gut, either. I'm sorry I know how painful this is.

Lots of people have luck with insurance covering these formulas. Definitely try that route!

[2boyzmama]

Call your area's Early Intervention Services (sometimes called Birth to 3 or something like that). They will have resources to help with expensive formula. Also call the GI clinic, tell them you have an appt in Oct, but in the mean time you need a way to pay for the Neocate, they often have resources to help families.

[DeChRi]

frugalmama - I never thought of ebay! We do not qualify for WIC. We are stuck in that middle income area where DH is self emplyed and does pretty well, but then we pay $1000/month for health insurance, etc, so at the end of the day, it doesn't look as good in the pocket as it does on paper, because we have to insure ourselves. BUT, we will adjust where we are spending elsewhere and will figure it out. I'll totally try ebay.

LadyCatherine185- me too! Also, today she went down that same crash pattern she usually does, BUT she bottomed out much less severely than she has on other BM trials. It was tolerable. Not in chronic pain alll day. More episodic, shorter, etc. So I am still nursing her as of right now, going to keep on through tomorrow to get 48 hr test of what her feeling in nursing. I have 2 cans of Neocate on hand as well. She was crabby and far from normal baby, but better. That being said...I am shoveling down buckets of my TED foods and am still 16.5lb down since 4 weeks ago. And I was low pre-pregnancy weight then. So I have been coating everything in olive oil.

jenfl - I know..I go back and forth on this! My Dr did call the GI but we are not critical enough to bump up the line. She is gaining okay, etc. If they find something on these tests we will be moved right on up.

2boyzmama- thank you for that resource!

[5gifts]

I've been following your thread, hoping for you to be able to know what the heck is going on! I'm dealing with a much, much milder version of what you have going on. My 10 wk old DD started having problems 4 wks ago - we're still trying to figure it all out - but muscle testing gave us some insight (she is too young for the sensitivities to be really clear)...and I wanted throw out there that liquid catnip & fennel helps when she is hurting.