I've been busy lately, helping to create and organize a local support group for patients and families with eosinophilic disorders. I just made a new website/blog, which is probably where I'll be posting from now on. Thanks to all my readers for continuing to visit! I will keep this site active, in hopes that some information can help new parents dealing with food allergies, but for now my focus will be on eosinophilic disorders.
Come visit me at http://empowerwashington.org/!
Quick update
Sorry readers that I have been MIA for so long. This has been one of the most overwhelming years of my life. Let's see if I can sum things up briefly.
Last spring, we decided to pull all remaining foods, and DD went to a diet of elemental formula (Neocate E028 Splash.) Her next scope was clean (no eosinophils or visible tissue damage/inflammation)! Since then, we've done a ton of food trials. Most have failed, but a couple have passed, so now she's eating Splash, blueberries, white potatoes, and canola oil. She's still dealing with constipation, some erratic mood/behavior stuff, and a KP-type rash on her arms and torso, but her scopes are still coming back clean.
This year, she's also been diagnosed with fructose malabsorption, small intestinal bacterial overgrowth (SIBO- which cleared up with antibiotics, but will likely reoccur), and low disaccharide levels. She's also had a few other blood tests that were slightly off, so we're still trying to figure out if there's something else going on with her.
We had our first 911 call after she snuck a piece of bread a couple weeks ago and had an anaphylactic reaction. NOT fun. The IgE reaction has gone, but the ensuing eosinophilic reaction is still lingering.
The new baby (who is almost 13 months old now!!) is following in big sister's footsteps with a lot of food issues. She's much healthier than DD was at this age, but I mostly attribute that to the fact that I can recognize food symptoms easier and pull the foods out of our diet faster. I feel like she's probably also dealing with an EGID, but have no plans to scope her until she's older. For now, she's just breastfeeding like a champ and eating a couple ounces of pureed green peas per day (her system doesn't seem to tolerate any whole foods, and the baby food green peas is so far the only food that doesn't make her sick.)
I had a double scope done last month to see if there were any unlying causes for my "IBS", and was diagnosed with EoE! My esophagus looked horrible, with furrowing and rings, and the biopsies showed 110eos/hpf. Talk about a shocker. There's no doubt that there is a genetic component in our family. :( After reading an article that said that eosinophils gather not only in the GI tract, but also in the mammary glands(!), I decided that I need to get my own disease under control asap. So at the moment, I'm also drinking formula and eating potatoes and canola oil with DD. I tried to go formula only, but the compulsion to eat is SO strong and overpowering.
That's about it for now. I have big plans to make a new EGID blog, or make some revisions to this one... but that won't be happening any time soon. Right now, we're just treading water, trying to keep everyone healthy without losing our minds. ;)
Oh- national eosinophil awareness week (NEAW) is coming up soon, as well as food allergy awareness week! Maybe I'll try to get things updated by then.
Last spring, we decided to pull all remaining foods, and DD went to a diet of elemental formula (Neocate E028 Splash.) Her next scope was clean (no eosinophils or visible tissue damage/inflammation)! Since then, we've done a ton of food trials. Most have failed, but a couple have passed, so now she's eating Splash, blueberries, white potatoes, and canola oil. She's still dealing with constipation, some erratic mood/behavior stuff, and a KP-type rash on her arms and torso, but her scopes are still coming back clean.
This year, she's also been diagnosed with fructose malabsorption, small intestinal bacterial overgrowth (SIBO- which cleared up with antibiotics, but will likely reoccur), and low disaccharide levels. She's also had a few other blood tests that were slightly off, so we're still trying to figure out if there's something else going on with her.
We had our first 911 call after she snuck a piece of bread a couple weeks ago and had an anaphylactic reaction. NOT fun. The IgE reaction has gone, but the ensuing eosinophilic reaction is still lingering.
The new baby (who is almost 13 months old now!!) is following in big sister's footsteps with a lot of food issues. She's much healthier than DD was at this age, but I mostly attribute that to the fact that I can recognize food symptoms easier and pull the foods out of our diet faster. I feel like she's probably also dealing with an EGID, but have no plans to scope her until she's older. For now, she's just breastfeeding like a champ and eating a couple ounces of pureed green peas per day (her system doesn't seem to tolerate any whole foods, and the baby food green peas is so far the only food that doesn't make her sick.)
I had a double scope done last month to see if there were any unlying causes for my "IBS", and was diagnosed with EoE! My esophagus looked horrible, with furrowing and rings, and the biopsies showed 110eos/hpf. Talk about a shocker. There's no doubt that there is a genetic component in our family. :( After reading an article that said that eosinophils gather not only in the GI tract, but also in the mammary glands(!), I decided that I need to get my own disease under control asap. So at the moment, I'm also drinking formula and eating potatoes and canola oil with DD. I tried to go formula only, but the compulsion to eat is SO strong and overpowering.
That's about it for now. I have big plans to make a new EGID blog, or make some revisions to this one... but that won't be happening any time soon. Right now, we're just treading water, trying to keep everyone healthy without losing our minds. ;)
Oh- national eosinophil awareness week (NEAW) is coming up soon, as well as food allergy awareness week! Maybe I'll try to get things updated by then.
Reaction timeline
We had a food reaction this week, and I thought it would be interesting to document the symptom timeline. It's good to remember that reactions (for allergies, and for EE) can really vary depending on the food, the amount, and the person. That's why a food journal is so important when you're starting out, because sometimes you just don't realize that something is a symptom until you see it happening repeatedly with certain foods.
----
DD is suddenly having a hard time seeing other people eat food that she can't have. Two days ago, she got up on our counter and ate 2 bananas before I caught her. :( Here is her symptom timeline for that reaction:
- within about 4 hours, she had diarrhea with noticeable pieces of bananas in it, and again a couple hours later
- that night, she slept horribly- tossing and turning, and waking up flailing and crying every hour or so
- the next morning, she told me her throat hurt (a common EE symptom)
- last night, she complained of leg pain and started rubbing her ankle (another seemingly common EE symptom- leg or joint pain)
- this morning, she woke up with bright red cheeks and a bad mood
----
DD is suddenly having a hard time seeing other people eat food that she can't have. Two days ago, she got up on our counter and ate 2 bananas before I caught her. :( Here is her symptom timeline for that reaction:
- within about 4 hours, she had diarrhea with noticeable pieces of bananas in it, and again a couple hours later
- that night, she slept horribly- tossing and turning, and waking up flailing and crying every hour or so
- the next morning, she told me her throat hurt (a common EE symptom)
- last night, she complained of leg pain and started rubbing her ankle (another seemingly common EE symptom- leg or joint pain)
- this morning, she woke up with bright red cheeks and a bad mood
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