Friday, August 13, 2010

The Latest Food Failure

With BabyM already diagnosed failure to thrive and now starting lose weight, we decided – with the ok from our favorite doctor – to trial a nutrient rich food. While Dr. Sullivan wanted us to trial a previously failed food, I took it as a “sign” that Wegmans didn’t have any organic sweet potatoes on the three different days that I went. We decided to go with Avocado.

Yesterday’s avocado trial was very funny. BabyR spit out the little cubes each time either he or I put one in his mouth. BabyM was more daring and ate a good bit. I finally mashed it up and had to sprinkle “pow-pow” (formula) over the top to get BabyR to give it a go.

BabyM started with hiccups before she even finished…not a good sign. After a few hours BabyR became clingy and fussy. Both BabyM and BabyR seemed to lose their appetite for the rest of the day. I took note knowing that only time would tell. This morning BabyR passed a stool that was unremarkable for the most part but still it did looked consistent with what we see when a food is leading to a reaction – we’ll have to give him a second portion and watch. BabyM on the other hand gave us quite a bit of information. The problem with the information is that I have only seen this with her once and it is not a “typical” reaction. She passed a stool spotted with small white “curds” – most likely malabsorbed fat. What this means I have NO idea. I am hoping some of the other FPIES mommies can offer some insight as to whether they have seen the same thing in their children.

With the GI doc on vacation until next week we’ll have to wait to get “expert” medical feedback. It is not as though his advice has been on target. Honestly I find the idea of consulting with him unnerving at this point since he treats me like some crazy diagnosis hunter. The funny thing is I AM looking for a specific diagnosis and I won’t stop until I get it…THE RIGHT ONE!

Taking this latest food failure into account I am tired. I spend hours researching –trying to find direction, ideas, and answers. I hope we can get into CHOP soon.

I am in need of God’s peace on days like these.

“You will soon see the light at the end of the tunnel.”

Jehovah Shalom


  1. The direction will come and the answers will too. Praying for you everyday.

  2. As another FPIES mommy just said to will see the light at the end of the tunnel...."it's just a really long tunnel"! Sorry! That's not helpful is it? But it gave me a giggle, maybe it will you too.

    My first thought was the fat malabsorbtion with the white curds- I have seen them before too and thought the same thing but I can't say I know what food to connect them with or at what point in the road I saw them. I am also not quite sure what it means in the scheme of things- every little one is so different....and you have two! You'll be the FPIES mommy expert before long- with two little "test" subjects to further your research. I have been in your place and am still there most days- it is quite a momma bear find out what is hurting your child and how to make it better- FAST!

    CHOP WILL be able to help, trust that...I hope you get in SOON!!!

  3. Joy, it is SUCH an obsession to help your children be well. Sometimes I wake up in the night thinking "FPIES, FPIES..."

    And yes - it is a VERY long tunnel!