It's been a long few weeks. I'm hoping Brynn will start to turn the corner after her tomato fail soon. =/ Diapers are still not normal, eczema is terrible, mood is all over the place, just like her appetite. Most of the time, she only wants bottles, with a few decent sized snacks here and there. She has lost 1 pound as well. After a struggle with a couple doctors about a week and a half ago, I brought her to a functional medicine doctor to see if they could help at all. They did a full physical...weight, height included. I didn't think of it right away, but a couple days later it hit me. I checked what Brynn's height was at her 12 month appt and compared it to the one the dr just did. Exactly the same. Hmmmm....according to the growth chart, she dropped from the 62nd percentile in height down to the 5th percentile (possibly a common trend in FPIES kids?). Ugh. Started calling the doctors again and FINALLY got one of them to help me do SOMETHING. They ordered some stool samples, so we got those taken care of Friday. They are first testing it for bacteria and infection...not want I wanted tested, but I guess you have to start somewhere, right? I'm really hoping that once those tests come back negative (I'm pretty darn sure this is FPIES related and not a bug), they will order a new set of tests to figure out what is going on.
We are also meeting with a new pediatritian on Tuesday. I spoke to her briefly last week and it looks like we may have found a ped willing to help and not just brush us off. =) I really hope we have finally found a doctor who wants to be proactive and someone that I can finally talk to when things aren't going smoothly with Brynn.
Please keep my fellow FPIES families in your thoughts and prayers...there are a few of my good friends that are going through hard times right now with their little kiddos. Hang in there guys!! =)
Saturday, July 30, 2011
Monday, July 11, 2011
Fail.
Corn has been an amazing addition for Brynn! She loves her kix and polenta (we call them her pancakes, lol). We have given her corn flour noodles as well as Trader Joe's corn tortillas, but she hasn't been into those. She gags with the texture and just ends up throwing them on the floor. =/ We are still limiting her fresh fruit intake, as it seems if she has more than 1 serving a day of fruit (blueberries,strawberries or watermelon), her gut seems to get irritated. A typical daily menu looks like this: plain oatmeal for breakfast, kix for snack, sweet potato or white potato for lunch (plain of course) along with fresh fruit, Original Cheecha Puffs for snack, and sweet/potato/white potato or polenta or a homemade mini-muffin for dinner. She doesn't usually eat a WHOLE lot per mealtime, so she still has her six 60z bottles a day too. With the recent illness and tomato fail, her diet has pretty much been her formula.
Tomato fail: I have been thinking about a tomato trial since the corn pass, so we would have some sort of sauce to use for her noodles or even for the tortillas. My mom and I went to the local farmers market last week and picked up some tomatoes. We gave her a small bite that night and she seemed to do ok with it. The next night, I got home and the report from the day was a good one, so I gave her 2 bites. I gave her a bath awhile later and noticed some major eczema going on on her arms and legs. Poor girl, it was red and blotchy and just sore. =( She slept like crap that night, being up for over an hour at a time and just restless. Her skin got worse the next day, so we decided to wait a day before giving her another bite. The next day she had major diaper issues....and lots of them!! ICK! That night and the following day were filled with diapers that had totally undigested food in them. Great, that means her gut is inflammed and she isn't absorbing her nutrients. Just yesterday, she finally starting eating a bit more, but her diet is still mainly her formula. Hoping for a quick recovery and once she is ready, on to a coconut trial!! There are lots of options with coconut. Coconut flour, nectar, vinegar, oil, ICE CREAM. Yes, we are going to be trialing coconut with ICE CREAM =) Best trial ever. And of course, we are trialing it not only for the variety, but also for the nutrition!! It reduces inflammation, improves digestive function, relieves symptoms associated with Crohn's disease and other colitis illnesses, and reduces problems associated with malabsorption issues. And did I mention that she can maybe have ice cream?? =)
Tomato fail: I have been thinking about a tomato trial since the corn pass, so we would have some sort of sauce to use for her noodles or even for the tortillas. My mom and I went to the local farmers market last week and picked up some tomatoes. We gave her a small bite that night and she seemed to do ok with it. The next night, I got home and the report from the day was a good one, so I gave her 2 bites. I gave her a bath awhile later and noticed some major eczema going on on her arms and legs. Poor girl, it was red and blotchy and just sore. =( She slept like crap that night, being up for over an hour at a time and just restless. Her skin got worse the next day, so we decided to wait a day before giving her another bite. The next day she had major diaper issues....and lots of them!! ICK! That night and the following day were filled with diapers that had totally undigested food in them. Great, that means her gut is inflammed and she isn't absorbing her nutrients. Just yesterday, she finally starting eating a bit more, but her diet is still mainly her formula. Hoping for a quick recovery and once she is ready, on to a coconut trial!! There are lots of options with coconut. Coconut flour, nectar, vinegar, oil, ICE CREAM. Yes, we are going to be trialing coconut with ICE CREAM =) Best trial ever. And of course, we are trialing it not only for the variety, but also for the nutrition!! It reduces inflammation, improves digestive function, relieves symptoms associated with Crohn's disease and other colitis illnesses, and reduces problems associated with malabsorption issues. And did I mention that she can maybe have ice cream?? =)
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