Real Time Post: Eliette's GI Issues....

Okay, so most of my posts are behind time....about a month behind!

But this one---this is the up-to-date info as of now.

Sweet girl has had some GI issues, and we primarily breast feed. We've supplemented with formula, and we've been through a TON of different options.... {regular Similac, Similac Sensitive, Enfamil Gentlease, Isomil Soy, Gerber Goodstart Soy}....and at that point, Eliette was put on her first hypoallergenic formula and sent to see a pedi GI specialist. Labeled as having reflux, but a "happy spitter," so no medication prescribed.

First visit with the specialist: looks like she's allergic to milk/dairy and soy. (For the sake of this blog post, allergy & intolerance will be used interchangeably, though there truly is a difference in the land of GI issues.) I was told that about 2-3% of babies are allergic to dairy, and then of that 2-3%, about 30% are also allergic to soy.
ARE YOU KIDDING ME?
We use our super-rare-statistic on something like this? Nooooo.....we can't win the lottery because we've used up our statistic on this mess.... ugh. (...well, that and I don't have the habit of buying lottery tickets. There's that....)

So....that was August 1st.
In order to continue breastfeeding, I was instructed to avoid all dairy and all soy.
Continue supplementing with Alimentum hypoallergenic formula...which smells disgusting. "Things should get better, see you back in 8 weeks."

Ummm.....we didn't make it 8 weeks. After 4 weeks, things were NOT better.
Went back to the GI on Friday. Got our official MSPI diagnosis. Milk Soy Protein Intolerance.

About MSPI:
"In the medical field the occurrence is also known as eosinophilic gastroenteritis or protein intolerance. MSPI is diagnosed through the history of an infant who displays irritable, colic-like behavior, poor growth, and abnormal stools, some of which visibly show blood. Confirmation of the diagnosis is made by a biopsy of the intestinal tissue showing an increased amount of eosinophilic cells, eroded intestinal villi, and hemorrhagic tissue. An increase in the level of eosinophilic cells may also correlate with an allergic response of the intestinal tissues due to the introduction of an allergic compound." (from mspiguide.org)

"Children with MSPI may cry 18 hours or more a day and may develop weight loss, congestion, repeated vomiting, reflux, and certain kinds of skin rashes.  They also may have changes in appetite, including refusing food or wanting to eat all the time, irritability/fussiness, and blood or mucous in their stools." (from completechildrenshealth.com)

Sooooo......that's what we are dealing with at the Casa de Lainey-Paney.
Eliette has bad spit up, colicky behavior, primarily in the evenings, and diaper/stool symptoms characteristic of MSPI (green, mucous filled stools). She also has delayed emptying/motility issues with her bowels. She may not go for a week, but when she does, she empties EVERYTHING. I've used trauma shears to cut off an outfit or two just to avoid getting poo up her nose during a diaper change. 

So, we took Eliette back to the GI doc on Friday. The update from that appointment:
*Opted out of the colon biopsy to confirm diagnosis because the risks outweigh the benefit of the test. Doctor feels certain this is the diagnosis, and she doesn't want to put her to sleep to biopsy or scope her. *Although I've been on the MSPI diet for over a month now, she's still reacting. My diet is now having to be even moooore strict. According to the dr, the food companies only have to list soy or dairy as ingredients on their products if they have a certain amount of that designated item in there, so there may be traces of either in a product and I'm not aware of it as I eat it. {awesome.}
*She put Eliette on Nexium, starting Friday night. It's a yellow powder that we mix with water, let it thicken, and then give to her. I hear it tastes okay....but Eliette's not so sure.... She doesn't scream and cry, but she seems to push quite a bit back out of her mouth.
*Switch formula for supplementation: going off Alimentum, and onto Neocate. Eliette tends to cluster feed in the evenings, so we often need to supplement then. This Neocate sample that she gave us: it smells TERRIBLE! Like bleach and dirty feet all put together in powder form. {The smell would gag a maggot.}

That's it for now. We're looking to see how this works.
If it doesn't provide miraculous relief, we are to stop breastfeeding (pump & save) for a "gut rest" and do strictly formula for a few days to see if this provides relief.

When I heard that in the dr's office, it was like my brain just stopped processing information. I heard "stop breastfeeding" and my heart broke and I mentally checked out. I had to make a conscious effort to understand the rest of what was said to us. Thank goodness my husband was there because I didn't initially understand what all was being said for the treatment plan....

I don't want to stop breastfeeding. It's an emotional thing. I think about all of the health benefits for Eliette too. I'm just not ready to stop.
...but, if she doesn't improve on my new diet, and I see some miraculous improvement on the elemental formula, clearly the decision will be made for us.

So....this is what we're dealing with around here. She's growing and gaining weight, so that's not an issue for us. She's happy most of the time.... She's just as precious as she can be! This GI issue....we'll figure it out. It hasn't been easy so far, but we're getting there. The good news: most kids outgrow this around 9-12 months of age. Yaaay!