As I’m beginning to learn, FPIES really sucks. Last night we had an accidental exposure to rice. We thought we’d be safe going out for fast food, and just ordering something that didn't have rice in it. Well, apparently, after calling the company HQ and asking for a breakdown of the ingredients in the sauce, rice flour is used in the making of the flour tortilla we ingested (edit: and found out the maltodexterin was rice based as well). My poor baby had a very bad night. Took almost 2 hours to go to bed (when she was clearly tired), was overly fussy, woke up about 20+ times, had gas and tummy pain throughout the night, and hiccups on and off all morning. Needless to say, I feel guilty not being as vigilant as I should have been. I feel terrible that I was too tired to cook, and the shortcut came at the cost of our daughter’s comfort and health. Unfortunately, today was supposed to be day 1 of the break in our corn trial, so now I might get mixed symptoms when we start back up in a couple days. This contamination thing is no joke. If I eat rice, or anything with rice, she gets it through nursing. If she eats rice, or anything with rice, she gets sick. It just feels so very unfair to see her go through this over and over again.
Our follow up appointment is coming up next week. I feel very frustrated and at a loss for what to ask the allergist. Where do I even begin? I feel like I don’t even know what to ask. This feeling of being helpless is frustrating, and makes it hard to enjoy “living in the moment” with my sweet little girl, when all I do is stress about her food… is she getting enough, too much of what she can have, are we causing eating problems in the future, will she have weight issues, will she have food aversions because we limited what she could eat at such a young age, will she gain weight, lose weight, ever stop nursing….. not to mention all the questions about trying to understand her condition, and what it is we should be doing to help her. Today is just a frustrating kind of day.
Monday, July 14, 2014
Saturday, July 5, 2014
The Allergist
Thursday morning was our daughter's first appointment with the allergist we were referred to for her rare food allergies. The allergist agrees that it's likely Food Protein Induced Enterocolitis Syndrome (FPIES) but wanted to rule out any regular IgE mediated allergies by doing a blood test for a full allergy panel to include rice, turkey, avocado, dairy, soy, eggs, nuts, and a whole slew of other things that she usually does on an FPIES kid food panel screening (she's familiar with it!!!) For us, this is a good thing, as knowing if she has a "traditional" food allergy on top of the FPIES ones will help us to not confuse the symptoms. As I understand (I'm still very new to FPIES, so please don't shoot me if this is wrong!) a traditional IgE mediated allergy shows up by blood test. The Immunoglobulin E (IgE) is a type of antibody that is present in the blood and binds to allergens. So when a trigger food is introduced, you see a response in the blood. You're able to know there is a reaction for sure... so this can cause all kinds of reactions.... itching, rashes, closed airways, wheezing, swelling, etc. Everything you think of when you think of a food allergy. Since FPIES is NOT an IgE mediated allergy, in theory, when these foods are all tested, there shouldn't be any response at all from the IgE in the blood. If there is, then we know she is potentially dealing with two separate types of food allergies. We don't believe this is the case, so our allergist expects to get back a "clean" panel telling us that she isn't allergic to anything in the traditional sense. (That tricky FPIES!)
Our allergist wanted us to get the blood test done right away. We were sent to the blood lab at Qwest Diagnostics, and they attempted to get blood from her arm... it didn't go well, and I can't imagine how it could have gone worse. They had my husband restrain arms and body her while holding her, while I attempted to help hold down her legs, at the same time as trying to (poorly) calm her down by singing, talking to her and various distraction techniques that all failed horribly. She was screaming before they even got a needle into her arm. Just trying to find the vein she was already crying hard enough to work up a sweat. By the way, this is clearly torture to a parent to have to put their child through this. Knowing that you need to have a test done, but that it's going to cause pain, anxiety, and fear in your child is one of the worst feelings I've ever had as a parent.
They couldn't get the blood from her first arm after struggling for about 8 minutes. SO they tried the other arm.... after 10 more minutes of wiggling the needle around in her arm, while she screamed and sobbed hysterically (all while we were restraining her arms, legs, body and head...) we told them to stop. We couldn't take it anymore, and they clearly couldn't find the vein. It was evident to both of us that they were not trained to do a blood draw on a 14 month old baby. We ended up being referred to a local Children's Hospital about 40 minutes away for their special lab equipment. They have a special light that you put under a baby's arm so you can see the vein through their arm or hand.
They were great! They just looked at her arms first, and knew right away that it would be too difficult; instead, they ended up taking blood from the vein in the back of her hand. She was drenched with sweat and tears by the time it was over. The hospital staff was great though. Once they got the needle in the vein, she calmed down to me making animal sounds for her (what does the duck say? quack, quack, quack...) She was so terrified of all the people, being held down, and the equipment. I felt so guilty afterward I went and got her safe snacks that she likes, and a new touch and feel book, took her home, and finally was able to nurse her right to sleep in about 10 minutes.
The good news is that it's done and over with, and we should have the results in a week or so.... here's hoping we don't have IgE allergies on top of FPIES.
Our allergist wanted us to get the blood test done right away. We were sent to the blood lab at Qwest Diagnostics, and they attempted to get blood from her arm... it didn't go well, and I can't imagine how it could have gone worse. They had my husband restrain arms and body her while holding her, while I attempted to help hold down her legs, at the same time as trying to (poorly) calm her down by singing, talking to her and various distraction techniques that all failed horribly. She was screaming before they even got a needle into her arm. Just trying to find the vein she was already crying hard enough to work up a sweat. By the way, this is clearly torture to a parent to have to put their child through this. Knowing that you need to have a test done, but that it's going to cause pain, anxiety, and fear in your child is one of the worst feelings I've ever had as a parent.
They couldn't get the blood from her first arm after struggling for about 8 minutes. SO they tried the other arm.... after 10 more minutes of wiggling the needle around in her arm, while she screamed and sobbed hysterically (all while we were restraining her arms, legs, body and head...) we told them to stop. We couldn't take it anymore, and they clearly couldn't find the vein. It was evident to both of us that they were not trained to do a blood draw on a 14 month old baby. We ended up being referred to a local Children's Hospital about 40 minutes away for their special lab equipment. They have a special light that you put under a baby's arm so you can see the vein through their arm or hand.
They were great! They just looked at her arms first, and knew right away that it would be too difficult; instead, they ended up taking blood from the vein in the back of her hand. She was drenched with sweat and tears by the time it was over. The hospital staff was great though. Once they got the needle in the vein, she calmed down to me making animal sounds for her (what does the duck say? quack, quack, quack...) She was so terrified of all the people, being held down, and the equipment. I felt so guilty afterward I went and got her safe snacks that she likes, and a new touch and feel book, took her home, and finally was able to nurse her right to sleep in about 10 minutes.
The good news is that it's done and over with, and we should have the results in a week or so.... here's hoping we don't have IgE allergies on top of FPIES.
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