My daughters stuggle and story

Our 7 month old daughter has a rare non-curable food allergy disorder called Eosinophilic Esophagitis in which his immune system attacks the food she eats thereby attacking her body internally. I've wrote about his disorder very briefly before. However, I've never went into full details about how his disorder affects her and our daily lives mainly because I don't want it to seem a bigger issue than it is.

But today, unlike most days, I feel the need to vent.

It breaks my heart daily to see my daughter go through this but she is a tough cookie Yes, I'm aware that things could be worse but knowing that doesn't make it any easier. Having a child with EE is not easy. She wont have a normal life. Among other things, she wont be able to eat at most restaurants, she will never have a school cafeteria lunch, and she wont be able to indulge in most birthday party cakes & goodies for fear of getting sick. The list of foods shes allergic too is long and it includes the everyday foods that are in about almost everything.


We are very thankful for our daughters health and spirt. But today I want people to be made aware of this disease and it's effect on families.

If you have a child with a life altering disorder, any of the EE disorders, or food allergies I'd like to hear from you

Thanks for reading

Nancy

Re: My daughters stuggle and story

I'm sorry that your family has to go through this. This may be a dumb question, but is it a condition that she may be able to "grow" out of or will she have it forever?

Re: My daughters stuggle and story

First off, so many I can only imagine how hard this must be.

Second, I have a good friend whose son is allergic to almost everything. He is almost four and he is still on Alimentum. He can have plain potatoes. Corn. Cauliflower. And that's about it. She takes him into a hosptial in the city every six months or so and they have food trials. He needs to be in the hospital since he vomits violently and needs to be put on IVs and monitored. He just recently did a trial, chicken and something else (I forget) and he is allergic to both of them still.

Not sure if this is similar to what you are going through but I can always get you in contact with her if you have additional questions.

Re: My daughters stuggle and story

Re: My daughters stuggle and story

I wanted to give you my BILs ex-GF has this she is 32. While I know it was hard for her, she is thriving. I hope the same for your DC.

Re: My daughters stuggle and story

I wish you much strength and that your DD will remain as healthy as can be. It must be very hard and very very heartbreaking.

Re: My daughters stuggle and story

Re: My daughters stuggle and story

My son has a pretty severe peanut and egg allergy and although it is nothing in comparison to your DD's condition I can empathize. Allergies are difficult to deal with and nothing to be taken lightly. One small drop of something can harm them for life.

I am sorry for all of the difficulties you have experienced during this journey of parenthood.

Have you tried to google and see if there are support groups out there? I feel like last year I saw a report on local news done on a little girl who had the same condition.

Re: My daughters stuggle and story

Posted by Diana1215

First off, so many I can only imagine how hard this must be.

Second, I have a good friend whose son is allergic to almost everything. He is almost four and he is still on Alimentum. He can have plain potatoes. Corn. Cauliflower. And that's about it. She takes him into a hosptial in the city every six months or so and they have food trials. He needs to be in the hospital since he vomits violently and needs to be put on IVs and monitored. He just recently did a trial, chicken and something else (I forget) and he is allergic to both of them still.

Not sure if this is similar to what you are going through but I can always get you in contact with her if you have additional questions.

Re: My daughters stuggle and story

Wanted to add, I did a quick search on google for support groups and found these. I am hope you can find some comfort in some of their stories.

NJ/PA Eosinophilic Support Group:
link

Winning Against Eosinophilic Esophagitis:
link

Re: My daughters stuggle and story

Re: My daughters stuggle and story

Re: My daughters stuggle and story

Ugh I'm so very sorry you're dealing with this. My daughter has a rare genetic condition of the skin, and I realize it pales in comparison to most (especially in the spectrum that is her disorder). Don't feel guilty when you need to vent...you have every right to! This is frustrating and upsetting for you and you wouldn't be human if it didn't upset you! I know Riley's condition is sooo minor, and I find it so upsetting and others may think, big deal, but this is my child, and of course when you finally have a child, you just want them to be free of any problems. So I totally know where you're coming from. I wish I could help out. I'm sure there must be support groups online...try to find those. I found plenty for Riley's disorder, and it really helped anytime I had questions.

Hang in there, you are doing GREAT!

Re: My daughters stuggle and story

Re: My daughters stuggle and story

Re: My daughters stuggle and story

That must be so difficult!!

I taught a girl a few years back who had severe allergies....she was allergic to most things....poultry, wheat, chocolate, eggs, nuts, etc....she had a reaction once because she drank a sip of someone's bottled water and there was something in it.
She was healthy and happy and a wonderful kid! She knew her limitations and she knew what she could or couldn't do and she never let her hold her back!

I hope that this might be something your daughter can outgrow.....but if not.....there is hope that she can still live the life she wants!!

Re: My daughters stuggle and story

I can only imagine how hard this is to deal with! That being said, I used to babysit for a little boy who had this condition. The good news is that by the time he was 8, he had grown out of it some what. He still couldn't eat dairy, peanuts/nuts, and had a glueten free diet. He knew what he could and couldn't eat. Parents in the class were sensitive to this and always included him in birthday parties (they would buy a special cupcake for him)


I also work with a friend of mine whose both sons have terrible food allergies. It is a daily struggle for them.

What has always interested me though is that in all 3 cases, the families were mixed Asian/Caucasian.

Re: My daughters stuggle and story

I have no experience with anything like this but your daughter sounds like a real trooper, and her mommy too Feel free to vent anytime, I cannot imagine how hard this is to handle

Re: My daughters stuggle and story

Re: My daughters stuggle and story

I am sorry you and your daughter have to live with this. It must be very difficult; don't ever feel bad about venting.
DS is allergic to eggs, he will vomit any time he eats something with egg in it. This pales in comparison to what your are going through, but I can empathize - he will never be able to eat birthday cakes at school or anything like that. Many hugs to you and your daughter.

Re: My daughters stuggle and story

so sorry-i cannot imagine how hard it must be!

Re: My daughters stuggle and story

I'm so sorry your LO has to struggle with this. It must be so hard I can't even imagine, we all take certain things for granted. I pray she grows out of this or there is a cure one day

Re: My daughters stuggle and story

I can realte on a different level, my three yr old is diabetic , she too will grow up carefully monitored, etc...its sux that both my dd and yours will never experience all the silly things others take for granted! I am here if you ever need to vent, cry, laugh, etc!

Re: My daughters stuggle and story

Re: My daughters stuggle and story

im so sorry that you have to go through this. It's frustrating and everybody needs to vent sometimes Best of luck to you and your daughter..