LIVING

With EoE, Allergies, Asthma and a G-Tube

Our family

family

girlsI’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

boysDealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.

So get out there and start LIVING!

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23 Comments »

  1. You guys sound just AWESOME!! I love it – and I love your positive attitude as we too knwo how hard this can be. Our daughter is two, has EoE, was born with it and currently has pears, apples, potatoes and Elecare as her diet. I try very hard to stay positive as she is such a happy, go lucky, easy going kid and we feel so incredibly blessed. Of course there are those days when I feel overwhelemed and warn out, but they too pass and we just keep on going. Thanks for sharing your blog … it’s fantastic and a happy reminder that we are not alone in this. =)

    Megan
    (Rory’s Mom)

    Liked by 1 person

    Comment by Megan Commito | September 29, 2011 | Reply

    • My kids are the same way – very happy and have learned to accept their allergies. I think it helps that daddy also has allergies. We sometimes joke about who can eat what. They know that we check their throats and eventually they’ll get to eat new foods. We reinforce that a lot. If I tell Gage he can’t eat something he says “my medicine make my throat better then I can eat it again!”
      Thank you for your kind words. It’s such a tough disease and I have my bad days. I have friends with kids with much more serious health issues so on those bad days we always tell ourselves things could be so much worse.
      Good luck with your little girl. I hope she comes off the Elecare soon.
      Kara

      Like

      Comment by livingtheallergylife | September 30, 2011 | Reply

  2. Kara—neighbor and friend next door Angela here. LOL LOVE your blog and ALL your info. WOW! You have really put together a well-thought (ful) blog. I’m exploring how I could “pull” a dinner together for you all since your precious baby girl as arrive. I think I’ve figured out something. I will wait till family is gone though! LOL

    Praying for you all.

    Like

    Comment by Angela Schumer | October 11, 2011 | Reply

  3. Our family has also been affected by EoS. Our son, Noah (6 yo) was diagnosed when he was 18mon old. Currently, he only has 6 foods (plus gtube elecare). He has been “trialing” foods for a long time now. We started out trying 3 at a time, but he was failing all of them. So now we only do 1 at a time. It’s a slower process, but it’s working! He is scoped every 3 months at Cincinnati Children’s! It’s nice to know there are other families that know what you go through.
    Noah is a lot like your boys…very positive, outgoing and extremely accepting of his disease and allergies. Best of luck to you and your family. Thanks for sharing your experiences.

    Like

    Comment by Lizzie | January 23, 2012 | Reply

    • Thank you for sharing Lizzie. Sounds like you’ve been on a long road. Do you ever take a break? That’s something I’ve become curious about lately. Do people just sort of sit still where they are and give their kids a break from the scopes and trials. Might be another topic to blog about!

      Like

      Comment by livingtheallergylife | January 28, 2012 | Reply

  4. Hi, I checked out your blog before but returned today (doing some reading inspired by National Eosinophil Awareness Week) and wanted to say that I find your blog inspiring and reassuring. I also check to get ideas for meals. He has 8 foods and I’m always looking for ways to keep things interesting for him.

    I learned about your blog from my daughter’s teacher, Ms. Roseberry. Funny, how I just now realize that I don’t know her first name. My son, 6yo, has EoE and multiple food allergies. When he was first diagnosed in 2006 his GI doc had just heard about it and did the endoscopy because she had exhausted all her other ideas for what was making him ill. His allergist and other doctors had never heard of it, and did not know how to treat it. It was a very scary and lonely time for me and my husband, as his parents. I wish I could have found other parents and blogs, like yours, then. Thank you so much for sharing. Thankfully, you and others have blogs out there and we’ve been able to find a couple support groups.

    Liked by 1 person

    Comment by Joy | May 15, 2012 | Reply

    • I’m glad I can help some. It is hard and scary even with the doctors help. If you’re ever looking for a certain type of recipe let me know. I don’t always post everything I make and may have something to help you out.

      Like

      Comment by livingtheallergylife | May 18, 2012 | Reply

  5. I am a 31 yr old mother of 2 awesome boys, ages 11 and 9. While I am extremely relieved that my prescious angels do not have EE, I however was just diagnoised with it. After 5 yrs of struggling with acid reflux and every medicine under the sun, things got so bad that I lost 40 lbs and could not swallow. I finally got a new GI doctor who did a scope and found EE and had to dialate my esphogus. I went to the allergist and had no food alllergies, but was allergic to dust mites. Both the allergist and the GI were hoping for a food allergy since i am allergic to steroids and cannot take the meds. At this point, any advise you could offer would be a blessing. I work a full time job while raising 2 boys and taking care of our home. Some days are hard to even endure when you cannot swallow and only weigh 100lbs. I am very heavy burdened for your beautiful children because understand. Thanks for your time.

    Like

    Comment by Crystal Byron | August 27, 2012 | Reply

    • Oh boy do I feel for you. I am sure they were wishing for food allergies. I will say this. Just because food allergies show up in a test doesn’t mean they are related to the EE. It goes the other way as well. You may not test positive but some foods may be effecting your esophagus. If you were my child I would start with removing the top 8 foods from your diet. Those are fish, shellfish, peanuts, tree nuts, dairy, wheat, soy and eggs. Try that for 3 months then ask to be scoped again. If there are no changes then remove corn and scope again in 3 months. It’s good and bad about the steroids for you. When taking them and eliminating foods from you diet the only true way you know it’s working is to do it with out the steroid. Sometimes the steroid can mask how you really are. You could eliminate food with steroid and scope zero eosinophils. Then remove the steroid and you could show eosinophils. So I would definitely start there and see what happens. I would be happy to make suggestions to you. I will even help you figure out what to eat. I have friends who’s children have EE and they have blogs as well that can give you recipes and things. Best of luck to you. I’m glad they figured it out for you. Hopefully you can start adding weight back and feel somewhat healthy again.

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      Comment by livingtheallergylife | August 27, 2012 | Reply

      • I babysit an EoE 3 yr old who was just given an ng tube at the end of last week. Now he has trouble drinking — we started using a straw. And he was off almost all foods — especially the top 8 foods. He refuses to eat try new foods. He has become inactive since the ng tube. He refuses to take his asthma inhalers with the ng tube. How can I talk him into taking his inhalers and trying new foods? Do you have a simple recipe for take-along snacks?

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        Comment by Sitter | April 6, 2015

      • We didnt try the ng tube but ive heard bad things about them. They can feel it in their throat. So of course they dont want to eat or drink. Ive even heard kids just completely shut down and get into a funk. By shut down i mean dont want to do anything. So i think what your little one is going through is very common. Do you plan to put in a mic-key button? If so can you move it up sooner? Im so sorry you’re going through this. You’re not alone. I wish i had answers for you. Is the inhaler for asthma or eoe? Once you’ve gone elemental all steroids for eoe should be removed. Best wishes and hugs.

        Like

        Comment by livingtheallergylife | April 6, 2015

  6. Thank you so much for taking the time and effort to inspire, support, and encourage all of us parents who have children with EOE. Our 15 yr old was just diagnosed with it and our 13 yr old probably has it, too. I feel very overwhelmed by the whole thing, as we are trying to figure out whether to do the food elimination treatment or steroid treatment. My son hardly eats anything now, let alone without any of the major food groups he eats (dairy and eggs) I’m worried about the cost of food and about the problem of cross-contamination. How picky do you have to be about plates, cooking utensils, etc.? I have 4 kids and am very busy. It seems almost impossible to do this, but I know it’s not, based on your blog. Any advice?

    Like

    Comment by Amy | August 21, 2013 | Reply

    • Take a deep breath! If there is inflammation you need to do the steroids. No questions about it. You have to get the inflammation down so there’s no scar tissue forming which is irreversible.In my house I prefer to eliminate foods so they’re not on the steroid. All the steroid does is mask the disease and reduce the inflammation. You don’t necessarily have to eliminate the top 8 foods. Go see an allergist and have a skin prick test done and see what comes up. Remove those foods.
      As far as cooking goes. I use the same pots and pans for everyone. I use the dishwasher and hand scub pots and pans. I am very careful to not mix things while cooking with the same spoon. I also don’t reuse any pots or pans with out washing first. With only one diagnosis right now it won’t be too hard. Just plan dinner as usual then adapt his from that.
      In the beginning I made two lists and hung them on the cupboard. One of the do not eat foods, we had an obscene amount. The other is of things they CAN eat. Flip through cookbooks, if it calls for beef broth and he can’t eat beef change it to vegetable broth. If it calls for milk use rice milk or coconut milk. You still can cook for them I promise. Keep me posted on things!

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      Comment by livingtheallergylife | August 26, 2013 | Reply

  7. So glad I found this through Pinterest! My 5 yo son was diagnosed with EOE in December and now has a j/g tube with Elecare Jr. Being his main source of nutrition. He’s on his pump 19 hours a day. He has motility issues so we are currently in the process of getting motility testing done because it seems he may have CIP. This disease is so frustrating but I manage to stay sane because my son just smiles and plays through it all….never complains! He’s been in the hospital for a week at a time 6 times since December and he honestly is my hero. God Bless the children and families that have to deal with this illness.

    Like

    Comment by Jamie | August 28, 2013 | Reply

  8. Hi!! I am new to this EOE thing! My son was diagnosed about 2 months ago though it is clear now this has been his problem since birth! We are currently waiting to be seen by specialists at Childrens Hospital of Philadelphia. Unfortunately, we cant be seen until July sometime! My son is having such a hard time lately and I was wondering if anyone might have some advice as to what we can do until we are seen in Philly?? I’ve called the hospital but they can’t really tell me anything since we aren’t technically patients yet!! This is so heartbreaking to see my child in so much pain and not being able to help him!! We have been given the neocate and alimentum formula today but I don’t see him drinking it. Is there any way to help make it taste better or can I put it other foods?? Any ideas are welcome!! We need help!! Thanks!!
    Tracy

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    Comment by Tracy | March 24, 2014 | Reply

  9. Hi, my son, Matt, was just diagnosed with EOE, he shows no outward allergic reactions but will only eat 3 foods. It was so nice to come across your blog and to know we aren’t alone. Thank you!

    Liked by 1 person

    Comment by Annie | December 9, 2017 | Reply

  10. Hi just found you guys.. I have 4 kids, 3 with EoE and multiple food allergies, asthma and environmental allergies.. Allergic to dairy, egg, peanut, tree nuts, soy, fish, legumes, carrots, and most fruits, Had a question if anyone can help. My sons scope biopsy came back really bad over 100 , but last one was 15 with no dietary changes.. could that big a difference be from possibly cross contamination? Im hoping not a new food, he is down to bare bones. And I dont want to try meds cause he is already on anxiety and migraine med? Appreciate any advise. thanks, good luck to you all. God bless

    Like

    Comment by Diana Curtin | July 30, 2018 | Reply

    • Hi Diana, you sound just like us! Was the 100 in the lower? You could always try reflux meds then scope again. If it was in the upper then def probably food related. Has he tried any of the formulas? Sounds like that may be a good idea at this time. The dr should be able to give you all different flavors of samples. I understand the spot you’re in right now. Hugs!

      Like

      Comment by livingtheallergylife | July 30, 2018 | Reply

  11. I’m glad I just found this blog. My toddler was diagnosed with EoE at 16 months old. He had 40-45 eos/HPF throughout his esophagus at the time. He was put on Neocate only and scoped completely clear on it. Then our doctors had us add fruits, vegetables, chicken, and rice, and he was just scoped again last week. We’re still waiting for the biopsies, but the doctor saw swelling and furrows in his esophagus that weren’t visible even on his first scope. So now we have to try to figure out what to eliminate. He tests positive to chicken so we may try eliminating that either with or without rice, but it’s not easy having him off so many foods. And he steals food sometimes too. It’s not easy with such a young child who doesn’t understand what food does to him.

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    Comment by Ahuva | August 26, 2018 | Reply

  12. HI everyone. I had forgot I found this blog ages ago, but lucky enough somehow just got a reminder email. I have 3 with EoE, and severe allergies to all nuts, egg, soy, dairy, fish, legumes, carrots and most fruits. I never ended up doing those supplemnetal drinks for my boys cause they refused them, but my third is not thriving at all, and losing weight and getting ready for high school in a year and a half and only 60 pounds so its time to try again. Im drawing a complete blank on the name. sure there are many but we need it to be free of all the things i mentioned and ready made would be best .. if anyone knows Id appreciate it. Wishing all of you and your families good health and blessings. Holidays soon, and we all know how trying that can be. thankss so much, love this blog

    Like

    Comment by Diana Curtin | October 15, 2018 | Reply

    • Do you mean Neocate? That’s the elemental formula my son is on. EleCare is another elemental formula.

      Like

      Comment by Ahuva | October 16, 2018 | Reply

  13. Hi guys. My guys have always eaten Mallomars but now that millk is issue I see says made on line with milk. ugh. My guys are gonna be devastated, wait for them all year.. I reached out but no answer. Has anyone ever gotten info on this.. sometimes you call and they clean, test the line, etc. so I was hoping that would be case.. I wouldn’t take chance with nuts, but might with milk for my guys as not as severe, and and only this time of year for these awesome cookies! .. if anyone has info, that would be great. Im gonna keep trying of course and will post if I get an answer.

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    Comment by Diana Curtin | October 16, 2018 | Reply


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