Tuesday, June 30, 2009

Reflux Redux

After my last post, Olivia slept through the night again two nights in a row.

Then last night? Our entire house was up at 11:30, 12:40-2, and 4:10. So that was fun.

I really do have a point, and it is that I am reaaaaaly tired. And so if this post doesn't make sense, or takes a turn for the bizarre, or ends abruptly? You know why.

Milk and/or Soy Protein Intolerance

Olivia has Milk Soy Protein Intolerance (MSPI). She cannot digest milk and soy protein without lots of abdominal discomfort, and sometimes? Bloody poop. Lots of people have success with Similac Alimentum, or Enfamil Nutramigen, and even Nestle Good Start. These formulas break the proteins down so that they do not need to be fully digested and pass through your baby easily. Like a tidal wave from mouth to diaper, if you want to know the truth. We had shoulder blade high blowouts when we first started Alimentum.

Babies with MSPI can have reflux. And once you get the right formula, you might notice an improvement in reflux issues. You might, but we didn't.

Alimentum and Nutramigen are pretty expensive - I am usually a Similac girl, and to give you a ballpark: Similac Advance was about $14 for a can of powder, and Similac Alimentum was $27.

Being the diva that she is, Olivia still couldn't tolerate Alimentum. And the gastroenterologist recommended Nutramigen AA because it would be easiest on her delicate little guts.

Let's talk about Nutramigen AA Lipil. By those dirty whores at Enfamil.


It is the same type of formula as Neocate and Elecare - elemental, broken down to amino acids. And if you think back to freshman year science class, you will remember that amino acids are the building blocks of proteins.

They are...Very Expensive.

Olivia: Come on...How Expensive Can Baybee Food Possibly Be? Surely You Exaggerate, Mother. You do have a flair for the dramatic.


Heh.

Without going on eBay or Craigslist, the best deal I have found is directly from Enfamil. For $155 a case - a case being 4 cans. So... $38.75 a can? And a can lasts less than a week.

Olivia: Excuse me while I pass the hell out!



But hey! Free Shipping!! Isn't that so very nice?!

I can't believe what people are charging for this stuff on Amazon and eBay. The retail price of this formula is significantly higher - the Walgreen's price was $25 dollars (per can!) higher. People online are selling it for $260 per case! Plus shipping!

If your insurance won't pay, ORDER DIRECTLY FROM ENFAMIL!

I tried to get my insurance company to cover the formula, and I believe their exact words were, "Don't hold your breath." I love their subtle approach. Always so caring about my feelings, those people.

The combination of Freaking Expensive Formula and Prevacid seem to be really helping Olivia. The Ped Gastro just informed us on Friday that she will need said Lexus Formula for an entire year. *gulp*

If you switch to this formula, be warned: it tastes like shit. And that is an understatement. I tasted it, and it tasted so bad that I felt like my taste buds would shrivel up and die forever. Disgusting.

Now, if I may make a swift change in topic, I'm going to post some good links for reflux information:

Infant Reflux.Org Click here.

This is the best place to start. Because if you go to your pediatrician and say "My baybee cries all the time and won't sleep," then you are begging for a diagnosis of colic. Write everything down - what your baby does when - and don't leave that office until someone pays attention to you.

The post linked has all kinds of useful info, but the entire message board is awesome for information about medicine, sleeping, eating, everything.

The Baby Whisperer Forums Click here.

Lots more sleeping and eating information, and a reflux forum. I read this book (two of her books, actually) and have mixed feelings. I will try to review it later because I'd like to see what other people think.

(Review in a nutshell: The author talks about a sleep training method that I have found to be complete bullshit. But I love her routine method, so it's worth a read.)

Marci-Kids Click here.

This website is great - it is the Midwest Acid Reflux Children's Institute. Pretty much the only place doing research on the treatment of GERD in infants and children. They have a dosage calculator and even a memo that you can take with you to your pediatrician or gastroenterologist if you think your child's dose of PPI is too low.


I think someone asked me to talk about how I got Olivia to sleep, and basically the answer is that I AM MAGIC. These are the things I tried to transition her from her car seat (which we were putting inside her crib) to laying down in her crib.

First, I tried inclining the mattress and rolling up a big towel and putting it under the crib sheet to hold Olivia's butt up. She has a tendency to slide down her mattress as if she is at the playground.

Thank you to everyone who recommended this. If I was trying to get Olivia to slide down the mattress and turn sideways onto the towel under the mattress? I would call it a success. (I put this in the FAIL category, but maybe it will help someone else.)

Then, I busted out the Snuggle Nest. I put a giant blanket over it, then rolled towels all the way around it so that the sides came up like the car seat. The Snuggle Nest has a wedge, so she was at an incline.

This worked for about a week, but we still had the scooting problem. She would end up sideways at the bottom of the incline. Laying flat on her back, looking up at me with a mocking smile.

The latest: I have the mattress inclined again (using rolled blankets and towels under the mattress), with a soft blanket on top (tucked in all around so she can't pull on it). We lay her on her side, swaddled. She usually wakes up partly unswaddled and way at the bottom of the mattress. BUT, it seems to be working well for us.

I need a nap.

20 comments:

Kim said...

Mia is on Neocate mixed with Duocal (calorie additive) mixed with Simply Thick (thickener). Our insurance not only pays for it all straight out, they also set it up to be delivered by a home health agency.

I can assure you that if your ped/GI deem this the ONLY nutrition she can have, your insurance WILL cover it or reimburse you. They HAVE to. If they said they won't, they're lying. I would absolutely keep calling and have your doctors send letters of medical necessity. They would NOT reimburse/cover an everyday formula for no reason, but she has A MEDICAL REASON.

Jen said...

So you are paying, what, like $50 a week to feed the precious baybee? That is how much it costs our household to feed a WHOLE ADULT HUMAN per week. Perhaps we should look into learning how to make this stuff ourselves and sell it? We could be RICH.

Parsing Nonsense said...

Wow...That is some expensive freaking formula! I guess your decision to go back to work was as timely as could be!

Poor Olivia, I'm glad she has such attentive parents looking after her little tummy.

KimboSue said...

Holy moly at the reflux and formula drama. And holy schnipers at the ram-it-up-your-ass-cost of that crap. I hope O enjoys it.

Anonymous said...

have you tried the "amazing miracle blanket" swaddle blanket? http://www.miracleblanket.com/ (i'm sure you've heard of it). it's the best swaddling blanket out there, in my opinion. little olivia should not be able to get out of it and it may help some with the scooting.

love reading your blog and your baybee is simply beautiful!

Pink-CJ said...

Try reading Healthy Sleep Habits, Happy Child.

Sandy said...

It's a good thing she's so cute, lol. That's what I'm always saying to Oscar, "It's a good thing you are so cute or you would be OUTTA HERE!"

shawna said...

I am not sure if you would qualify, but Emfamil also has a Helping Hands program for this formula. We pay about $90 a case since we qualified. We have 4 kids and only one income thoughm but it might be worth looking into.
I think that your pedi has to refer you through the formula reps.

shawna said...

Oh, and FWIW we tried jumping through every hoop imaginable. Our insurance will NOT pay for it.

Emily said...

Yikes! I am sorry you are having such difficulties. GL with insurance! LOVE the pics & captions :)

calliope said...

holy shizzle! that is just insane.

and good night do you have a cute baby!!!

Keri said...

Oh my gosh, I loooove that picture of Olivia passing out at the cost of the Lexus formula. That's what I would have done, too:-). I cannot believe that they charge that much!

Erin said...

Oh my freaking Gah. I had no idea that shit was so expensive. I bet that's cutting into her BabyGap fund. Bitches. I cringe everytime I have to buy a can regular Similac. But now I will remember you and your $38 can and I will be less pissed off at my $24 can. Is she eating baby food yet? My little boy is a couple of weeks younger than Miss Livie Lou and I'm already stuffing him full of rice cereal!

Deb said...

Dang! My daughter went through the whole reflux thing for the first three months. We went from Zantac to Prilosec to Prevacid. Thank heaven above she is not lactose intolerant as Enfamil AR did the trick, of course it's more expensive than regular, but nothing like that. I truly know why God makes babies so darn cute!

Mary Katherine said...

Have you ever heard of a "nap nanny"? If she doesn't have to be swaddled to sleep you could try that for the incline or you may even be able to get it to work while O is still swaddled.

smittenkitten05 said...

Hi Jen,

I was wondering if you would be willing to share your thoughts on infertility now that you have had a baby? Do you feel that it has erased the bad feelings associated with the last few years of ttc? When do you think you will try again for #2? Will you go back to the RE right away or try on your own for a while? Thanks!

Cort said...

Have you tried this bed thingy?:

http://www.ambybaby.com/

My friend's baby girl had reflux, and she said this is the only thing that helped her sleep.

Ouch on the cost of the formula. I can't imagine. I'm going to cross my fingers that my baby doesn't have this. I guess we'll see in about four months.

Gabrielle said...

I know of some reflux premies who have had success with this, and ins. will cover it:
http://supports4kids.com/patient_care/danny_sling_and_kerry_kuddler.htm

Good luck!

Eileen* said...

I. feel. your. pain. My kid was on that expensive ridiculous formula for a long time. Totally broke the bank. by the way I got your blog from Andrea, and also, your hilarious. :)

Deanna said...

We did Nutramigen for a year. Gag-o-matic. One year tests showed a true allergy for milk and he does well on soy for now. We go back in a few weeks for a set of 2 years tests, but are considered anaphylactic to all forms of dairy for now. There are tons of websites out there for moms of MSPI babies and they're really helpful for developing recipes as baby gets older and needs meals tailored to her dietary restrictions.