So Evan's been on Budesonide for several months. A liquid inhaling steroid that he ingests, to help his esophagus heal. Origianlly the plan was to do a follow-up scope in December, but we still need to pay $500 of the $3,000 we had to pay out of pocket for the last scope, and decided to move the next one to March 2017. Overall his definitely had less reactions with his skin, and we've trialed some cauliflower and broccoli. He seems okay with caulifower, but refuses the broccoli and says it causes him stomach pain and nausea. So helpful that he is able to tell me this. Since being on budesonide twice daily, he's been more willing to eat some soft foods that are not pureed, and sometimes will even eat a slice of raw apple : )
So Evan had his esophagogastroduodenoscopy with biopsies. We are thankful that he did not have a reaction to the general anesthesia (they did use a different one than the usual). We already knew that he has eosinophilic esophagitis. His esophagus is so inflamed and swollen in one area that it is almost closed up, which is not what we were expecting, especially since we haven't trialed any new food lately, and he only had his 13 'safe foods'. It does explain why he only wants to eat very soft foods and mainly pureed. Still waiting on the biopsy results we should receive soon, before his GI makes a decision on how we proceed. Praying that he does not need a feeding tube!
I haven't been taking the time to post updates, so this is long overdue.
On Sept 4, Evan had a severe anaphylactic reaction and I had to use the Auvi-Q and bring him to the ER. He either reacted to something environmental or a trace of food he got in contact with at the playground. He had every possible symptom listed on the action plan, and I consider it a miracle that he survived. Hope we never have a night like that again, especially when Rich is oversees and I am home alone with the boys!
Also, Evan used to be fine with pedialyte, but earlier this year, we gave him some twice and both times he immediately broke out in hives and itching, and large red spots in his face. Our guess is that they added some new ingredient.
Evan - 4 1/2 yrs old
Update on Evan's EleCare and insurance: After more than 7 weeks of ordering the next 3 month supply, and more countless hours on the phone this week, I finally got the word that our insurance's claim devision changed the status for it from denied to covered, and we also now don't have to reimburse them for the cost of the previous shipment they sent!!! PTL! That is all I wanted for Christmas! If all goes as I was told on the phone, we should be receiving it in 10-14 days! Thank you so very, very much to all of you who were praying!
Evan had a night this week with rather severe reaction to wild Alaskan halibut (fish), including hives, swelling in face, vomiting, and severe stomach pain, diarrhea, cough... The first 2 hours I was up with him I kept contemplating whether I need to give the EpiPen, but then he got better with other antihistamine. I so dislike those moments, when even as a nurse, I don't know if I am doing all I need for my son. Those kind of nights are more frequent than I wish, and make me even more thankful for EleCare. Evan, seeing my tears after I got the positive news from insurance, asked me: "Mommy, why are you happy and crying?" How do you explain tears of relief to a 3 yr old... The boys and I ended up doing a 'good news celebration dance' together!
Sharing an update on Evan and our current food trial: After failing a list of meats, we decided to take a chance, pray hard, and trial fish with him. He’s had 6 days of wild coho salmon with no acute reaction. No swelling in the face, and no trouble breathing! He loves it so much, he always asks for seconds, even with nothing added except a little salt. (I even cook it with water, since we have no safe oil for him yet.) I am in tears of relief and tears of joy that this might be his first safe source of protein and heme iron! Despite being on 30-40 ounces of EleCare/day, he's been low on iron for a long time, so that is huge! I can’t even express in words how much this means to us! With the unpredictability of FPIES and chances of chronic reactions, we trial at least two or more weeks to call it a pass, but we are very hopeful! Thank you Lord and thank you to all who are praying!
Update Nov. 31: Evan did not show any noticeable reaction to wild Coho Salmon, so we are calling it a pass! We 've also given him wild cod a few times, and he broke out in terrible itchy rash, but we can't fully exclude cross-contamination.
Great news is that we are able to add parsnips and turnips to Evan's list of safe foods, giving him a variety of 5 vegetables! We were hoping to add a meat. We know from past reactions and testing that he is allergic to chicken and beef... The Icelandic lamb is as grassed as you can get it, we are told, so we bought a few small pieces that were ridiculously priced. Evan started breaking out with a terrible itchy rash within hours after the second time he ate some, but so many other reasons can cause reactions, that we decided we would push through with the lamb trial. Then he started having trouble breathing and swelling up around his eyes, making it clear that we had to stop the meat. He loved it at first, then started refusing it, probably realizing that it was causing him stomach pain and other symptoms. So, still no meat... Once he heals from this reaction, we plan on trialing a wild fish.
It was an interesting Labor Day weekend with both kids needing antihistamine: Josiah because of a reaction to cats, and Evan because of some traces of food he must have accidentally touched in a public area! Hard to avoid those food traces, even in, or especially in play areas, because most do not wash hands after eating!
With much joy, we've been able to add cooked beets and cooked carrots to Evan's list of safe foods! We now have 3 safe vegetables! We thought he was safe with green grapes, grape seed oil, and small amounts of well cooked strawberries, but he started receiving stomach pain and severe, itchy rash from these : ( He's also been reacting similar to fresh blueberries, even organic, except for those from my parents' garden! Makes you wonder what pesticides are used on organic, despite being organic!
Trialing grape seed oil with Evan right now. It's been wonderful to have an oil I can use to make 'kale-banana-millet' pancakes for him and to use for baking different foods for him. So far no reactions!!!
March 14: Ever since Evan was put on EleCare in 2012, we had it fully covered by insurance! This year the plan we were on is no longer available, and we had to prepay $720 for his next shipment : ( Still better than paying all of it, but we certainly did not plan on having to budget for this. So far we have not received the shipment I first ordered 3 weeks ago, but I have learned to order plenty of time ahead, knowing that it could easily take a month to receive it.
February 28: With it being rare disease day, I wanted to post something in regard to our FPIES/EoE life: Every three months I need to order the next 3 mo shipment of EleCare for Evan. It is always a bit of an ordeal every time, with insurance going back and forth on whether they will provide it or not, and how many cans, and requesting other info from the pediatrician... It has taken me 30+ hours on the phone over a period of 4+ weeks for one order to be finalized! Very grateful that insurance payed eventually every time so far! A week ago I called to order the next shipment, and had to make several calls since then. My order was labeled as claim failed, but later was tolled that 'yes, it will be shipped'. The insurance plan we had in the past is no longer offered, and with the new plan that started this year we have to pay much more out of pocket, hence we are anxious to find out how much we end up having to pay ourselves. Praying and hoping that our insurance will indeed continue providing the EleCare for Evan! We will update once we know...
May 2013 Evan was diagnosed with EoE, along with his FPIES and other medical issues. We've been so thankful that he is able to receive his nutrition without tube-feeding, and hope he never needs this. So far, he's been tolerating the unflavored EleCare well, as long as he can drink it with a slow flow nipple, and he's able to eat his 6 safe foods in different ways, although he usually still prefers his food pureed and some freeze-dried, and he loves his blueberries whole and fresh. He now sleeps through some nights, but other nights he frequently cries because of stomach pain, itchy eczema, trouble breathing, or cries for a bottle of EleCare, and frequently has swelling in the face.
Here are a few links with more information on EoE:
Joshua's Battle with EE
Alysa's EOS Journey
National EOS Awareness Week from ausEE
Eosinophilic Esophagitis (Matthew Greenhawt, MD)What are the most relevant research findings on EoE
Sending your Child to School with an Eosinophilic Disorder
Looks like we can call proso millet flour from Big River Grains a pass for Evan!!! To give him some variety, we ordered 12 bags of puffed millet from a different company, and he LOVES them, but over the weekend he developed a severe itchy rash, swelling in face, trouble breathing, and acid smelling, green, mucous-y diarrhea after eating them several times : ( Most likely it is due to cross-contamination during production or because it might be a different kind of millet more similar to sorghum, which he reacts to. Still waiting to receive an answer from the company. I guess we will be eating the puffed millet for breakfast when Evan is not watching, since he will cry to have some too. Once he has a safe oil, I will try to make him some homemade puffed millet. Maybe the next food trial should be grape, then grape oil... although I would love to find a food for him that is high in iron, which he is lacking. Such a big decision and hard choice on what to trial next, once he heals from this reaction!
Baked more mini-muffins for Evan today and made a pancake for him for supper with the same dough mix (see under 'recipes' for details). Due to the time he needed to heal from EGID, it's been so long since we trialed a food in form of flour. He did not want to eat the pancake, and only picked out the blueberries in it. With a miniature cookie cutter, I decided to cut out little stars for him, as many as I could. He ate it all, even the left-over from the cut-out, and was happily humming 'Jesus loves Me' and moving to the beat, while eating and saying "it's good". This made my week and melts my heart!
Josiah loves everything I make for Evan and the two brothers always have big smiles on their face when they can eat a food together that's safe for both. I've heard them call those moments 'a party' : ) Such sweet boys!
Josiah (now 4 1/2) still has some FPIES symptoms, we think to fish and mushroom and possibly eggs and other foods, and over time build up a severe anaphylactic/IgE reaction to cats, and IgE to egg yolk. No wonder he never wanted to eat scrambled eggs. Hence, we had to increase the number of EpiPens we bring along everywhere with our boys from 2 to 4, and always carry Benadryl and Ventolin with both of them as well.
We are trialing millet with Evan, 2 1/2 yrs old now. He reacted to all grains we've tried so far, including sorghum. The proso millet is in the same sub-family but in a different group of food 'tribe'. It is the only grain he had no reaction to with patch testing, but he broke out in a severe itchy rash and green, acid smelling, mucuosy diarrhea, cried more at night... The symptoms could also be due to some cross-contamination when we were out with him, although we rarely attend any social events with him anymore when food is involved, and we don't eat out. Gave him a few days break and continuing the trial. Not calling it a fail yet. Will bake more mini-muffins with the millet flour, which he LOVES.
Also check under "Evan's Story" for a short update posted this month.
Due to biopsie results, we reduced Evan's amount of solids even more two months ago. Saw GI this week. We will continue same for next 3 months. He gets small amounts of apple, banana, pear, and blueberries, with EleCare continuing to be his main nutrition.
Forgot to add update on coconut. Evan ended up getting terrible itchy rash with hives, swelling in face, vomiting, and we had to stop the coconut : (
So we are trialing coconut with Evan right now. Very versatile as fingerfood, a drink, oil, butter, and it has iron, which Evan is lacking... Baked him some sorghum/oat flour cookies with blueberries and coconut virgin oil this week. He liked them the first few times, and then refused to eat them. Wondering if he had abdominal pain and knew it was from that? He broke out in a bad FPIES type rash on his hands, arms, feet, legs, and cheeks, and had trouble breathing last night and this night. We've been giving him Benadryl and Ventolin. Today I cut open a fresh coconut and shaved off some for him as finger food. He LOVED it. So far no vomiting, but the itchy rash continues, and he is having difficulty breathing again, and has been extremely restless this night with crying. Not concluding that it is the coconut yet, but it is possible. I so wish there was another way of finding new foods that were safe for him, than the slow process of trialing every food, and watching him react to most of them!
Along with his many symptoms due to FPIES, Evan recently had severe IgE type reactions to eggs and milk with big, itchy hives over whole body, trouble breathing, lethargy, and swelling in face, and required epinephrine. With the milk, he also had profuse vomiting. Along with his peanut allergy, there are at least three foods he needs the epi-pen for, if he ingested any amount. He seems to have build up a much stronger reaction to milk and eggs in the past year, so we are increasing the number of epi-pens on hand from 2 to 4, after having it confirmed through prickle testing this week. We do hope he will grow out of some of his allergies!
We thought Josiah completely grew out of FPIES, but he's had several episodes this year of profuse vomiting after eating a small bite of fish and one time after eating one little slice of fresh cooked mushroom. Glad he does not react to more foods, and is able to eat everything else!
I know Evan reacted to regular eggs from cage free chickens, but he seemed fine in the past with little amounts of egg from pasture raised chickens. I was all happy to be able to use an egg when making muffins for him, since he is allergic to dairy and we don't have any alternative safe 'butter' or oil yet, and he seemed to have a reaction to baking soda.
I did not give him eggs for a while, but made him an egg/sorghum and he broke out in big itchy hives and has bright red cheeks. It took him 90 minutes to fall asleep, and normally he falls asleep instantly. He's screamed several times during his sleep. Poor little guy! Wondering if I should have given him the EpiPen, since he does have more difficulty breathing, despite receiving singulair?
So we're down to 8 safe foods plus EleCare at almost two years of age. I have not been able to add a new food for over six months. And often it is such a guessing what to figure out what is causing the reaction, as it can also be a book he nibbled or cross-contamination, or...
We have a barrier between kitchen and family room, to keep Evan out of the kitchen as much as possible, due to all his food allergies. So I saw him chew on something and quickly tried to take it out of his mouth. Sure enough, he tore off a small piece of the cardboard and was just swallowing a tiny piece. Unfortunately, I could not get everything out of his mouth anymore. Four hours later, during the night, he suddenly started screaming. His bed sheet, blanket and sleeper was covered in vomit. He later had the usual rash and diarrhea. I guess at 21 months, he still has reactions to cardboard, possibly due to the soy often used in cardboard, which we know he is allergic to.
Evan, unfortunately, puts everything in his mouth, so I am always hesitant letting him sit on the ground, but I really wanted to take some photos of the two with fall leaves. Well, he ended up nibbling on a maple leaf, and a few hours later was vomitting, then had a terrible itchy rash, he scratched himself till he was bleeding. No more leaves for Evan.
We thought Evan was fine with eggs, as long as they were from pasture-fed/grass-fed chickens, but this week I fed him half a scrambled egg and he cried and cried at night. He had some vomiting, and diarrhea and an itchy rash the next day. Not sure if he was reacting to the egg or the safflower oil I used with it... He seemed fine with the pasture-raised eggs, when he had them in homemade sorghum pasta or muffins. We did try other eggs from cage-free chickens some months ago, which clearly caused vomiting!
So I took the risk and gave him more eggs for two additional days, this time without the safflower oil, and amazingly, his rash cleared up some, instead of getting worse. This makes me conclude that he most likely reacted to the safflower oil and/or something else he touched or picked up. So glad if he can have eggs from pasture raised chickens, and safflower oil goes on the unsafe list of foods for now, though he might only be able to handle a small amount of egg at a time...
I am the mom of two precious boys, who fill my days with much life and laughter.