Eosinophillic Disorders/Food reactions

[Anonymous]

I am sitting here crying reading this whole thread. It is so wonderful having these kind of support systems. You all live in my world…your fears are my fears, your struggles are my struggles. I wish sometimes I can just get a real life hug from any one of you.

We are in the same boat. (My daughter is nearly one so ignore my signature line, it’s outdated) I am so frightened that my daughter has EE. She is totally stablized on Neocate (Praise the Lord!). I introduced squash. She tolerated it, but only ate a few bites. We stuck with that for 3 weeks. No problems at all, except a volume problem. We tried pears. No problems there. I began to get hopeful that all this would be in the past. Then I introduced bananas, and she spiraled downhill and then couldn’t tolerate any solid food at all. Her formula intake goes way down too. I then have to start all over again after waiting a couple of weeks.

My fear of putting her through an endo is that the neocate healing will cause it to show negative for EE. This is what has kept me from doing the procedure. I am scared to death of the procedure itself. I am scared of how she’ll feel after it’s over (sore throat, etc) And most of all, I am scared that the Dr. won’t know what the heck he is doing and mis something. In my fear, I just keep waiting and praying that this will go away.

So what, if they have EE they stay on formula for the rest of their life?!! How can a person survive?

If a child usually outgrows these problems by 2, then why not just keep them on formula until 2 to give them the best chance of not giving them any offending foods?

If an endo shows negative, but my daughter can’t tolerate solids, what does that mean? Just food allergies?

I AM SO SICK OF WONDERING AND HAVING TO BE HER DR. FOR HER!

I am so sorry to hyjack your post…I can just totally relate and wish instead of typing, you were sitting on my couch next to me.

Tears still falling,

Angie

[Anonymous]

Hi ANgie

Sorry you are going through this. I am sorry baby is only taking formula but if it works, then at least your baby is eating! Some of my thoughts are:

– did you ever see allergy signs with the other formulas? Sometimes it can be an allergy and sometimes it can be an intolerance – hopefully whatever it is will go away (my husband was extremely allergic to milk and he outgrew it totally when he was 6 yearls old!!!).

– what are the signs when she eats solids? I mean the formula decrease yes could be a sign of the pain from the esophagitis… anythig else? Some babies cannot stand bananas… have you skipped that and tried something else? When you say you start all over again… you don’t give bananas but try something else and it is the same thing?

– really, EE is really not that common (really uncommon but some people are thinking about MSPI type reaction and it is not) and the only way to rule it out is the endo. It is such an easy procedure. IT DOES NOT HURT REALLY. i had one in december. They are sedated (not put under but sedated through an IV it seems in this country) and therefore do not move around. The tube is tiny. As soon as they go in, they can see if there is irritation. The irritation can be caused by reg reflux or EOS cells so they do a biopsy (although EOS cells are truly visible supposedly). there is no sore throat or anything afterwards, Maybe grogginess but that is it. Not sure why there would be pain…. in the past when they did these awake, the tube was touching the esophagus and moving because patient would gag and gag and that could cause some irritation. The biopsies are so small too.

– have you done a soy or diary trial… and it was unsuccessful? Maybe the plan would be to try that and some solid and then get the endo done adn you would know!!

– as for the neocate until they are 2… a lot of babies you do not well on milk formula do well on yogurt and cheese… and i know that some babies are allergic to a ton of proteins but it is pretty rare. There are some metabolic tests that can be done to see if there is anything congenital in the digestion of proteins

– there is also FPIES but from what you say there seem to be none of the symptoms….

[Anonymous]

Angie-

Sorry I didn’t see your post here before responding to your other thread, so you can disregard some of my comments there. To answer your question why don’t they just keep them on formula until they outgrow it, I think the answer is that they need exposure to food before they reach the age where they are resistant to change. I see you also have a 2.5 year old so you know what I mean!!! Chewing and swallowing also help to develop oral motor skills that aid in speech (this doesn’t mean that if they don’t eat they won’t talk, so don’t worry!). Like Thais, I wonder what kind of symptoms she has been having? Can it be teething? When Hailey started cutting teeth about 1.5 months ago, she also cut down her formula intake (to 12-15 oz…yikes!) and started refusing purees. She still refuses purees and doesn’t take much more formula so I know how you feel. We are also struggling through this mess, though hailey’s reflux is AWFUL and I am petrified of being one of the people who need a fundo down the road. I pray every day that isn’t the case. Regarding the endo- I was petrified of this test, until a wise woman on this board posted a VERY frank response pushing for testing. At the time, I was offended, but as I thought about it, I realized that it might be scary, but it might also be the only way to get answers for us. Ironically, once I decided that I wanted the endo, I learned that it would be a long wait for us to get it. Hailey is now scheduled for her endo in the middle of September, almost a year after I started this fight for testing. I know it can be scary, but I look at it like this- if an adult was suffering like our babies were, there’s no way a doctor would let them go on for a year or more without being able to eat, saying that they’ll outgrow it. They would immediately suggest testing. I worry about it sometimes- the way it’s set up here, I take Hailey to the hospital OR, and they take her away from me at the waiting room and walk her into the OR where they sedate her by IV. Thinking about how scared she’s going to be (because she also has some social issus) breaks my heart. They don’t do it like that in the US though, and I find Thais’ experience comforting in knowing that it doesn’t hurt.

I can honestly say that I KNOW exactly how you feel. It’s so lonely and isolating. Please hang in there. Here’s a virtual (((HUG)))!

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