My 4 year old and I both have a disease called Eosinophilic Esophagitis. When we eat food that we are allergic to, the white blood cells in our esophagus attack the tissue in our esophagus. This can swell our esophagus, it hurts, food gets stuck, I choke. If my 4 year old accidentally eats milk, he will throw up for 24 hours. That has happened 5 times. We have gotten better about not letting him accidentally eat something containing milk. Since part of not being sick for my son includes not eating a lot of specific foods, he has a feeding tube that he gets most of his nutrition from in the form of an amino acid formula. They break down food so that there are no proteins that would make him sick. It tastes nasty. Getting the special formula in him is only going to happen via a feeding tube.
This video was made from the local support group. Please take a few minutes to watch it. What I wish people knew about EE is that it isn’t fun.The hardest part is feeling not normal. When a teacher sends home a request for you to not send in specific foods, please know that there is a child who didn’t ask for their food allergy. The child doesn’t want to be left out. Don’t punish the kid by going against the request because you think it is annoying.
While I think this EE monster is annoying and painful and uncomfortable etc, I feel fortunate to have my son. I know there are many things that are much more severe or difficult to deal with. I am thankful that my son ONLY has EE.
You can read more about my EE story from last year.
~Anjeanette
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7 comments:
Thank you for giving me an "awareness" of this disease.
I am glad he is part of our family too. It is always hard for people with out food allergies or sensitivities to understand what it is like living with them.
Food allergies don't just show up as a rash on the skin but can also cause behavioral problems as well. Especially for those with sensory issues.
I am thankful for my son's teachers who call me when they want to know if he can have a special snack that has been brought in to the classroom. I wish I could have a heads up ahead of time but that isn't always possible. I usually supply his teacher with some snacks he can have instead of the ones he has to watch everyone else eat.
I am thankful to my family and friends that try hard to make sure that my son has something he can eat when we get together.
Love,
Katrina
A kind reader directed me to your site. My son was diagnosed with EE late last year. We are in the process of eliminating food from his diet. It can be very overwhelming. I had no idea there was an awareness week! Thank you for pointing this out!
I went to the doctor this afternoon regarding weird symptoms esophagus/hiccup/swallowing related. I had put it off for so long, because who goes to the doctor over hiccups? After a little looking around, I guess there are a ton of different things it could be.
I too, wish that food didn't have to be such a huge part of events for kids. Awana, sports, etc., - they all have food on a regular basis. Frustrating!
Thanks for the enlightening of this condition in your family, I had never heard of it.
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What is wonderful is that you live today...so many children who have rare conditions such as your son's would have died in the past and the only thing the doctors could have diagnosed it as is a failure to thrive.
Thanks for the information. So sorry to hear that people bring in treats that might not be appropriate for your son. I assume they didn't know there was a child with food allergies. Has the teacher sent out a note to parents about it? If they brought in treats knowing about the allergies--shame on them.
I do wish that, as a society, we could move away from the idea that food is necessary for socialization. We are obsessed with centering everything on food. Half the time hosts are so busy with cooking, serving, and cleaning that they are hardly are able to fit in the social part.
Birthdays used to be celebrated at home. Now most kids have multiple celebrations-at school, with family, and with special friends. Schools are for learning. It's time to move the parties out of the classroom. With the statistics on childhood obesity, it makes even more sense.
I took one step in the, "yes, we can socialize without food" direction. I started a book club that does not include serving snacks. Coffee, tea, etc. are available. Most of the participants seemed a bit taken aback when I brought it up. After two years, I can say that it has worked out great. We have more time to talk, no worry about what to bring, clean-up is a breeze, and dieters are not faced with temptation.
Thanks once again for the information. It's a great reminder to be aware of these issues.
I know now and I thank you for spreading the word. We have a son with severe anaphylactic food allergies and one of the worst things is getting other people to take it seriously. I think helping to get the word out as you are doing will help people to see what some kids have to contend with and that it is best to do what you can to be compassionate.
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