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amother




OP
 

Post  Fri, Feb 21 2020, 9:47 am
My child was just diagnosed with EoE. I'm feeling totally overwhelmed and looking for some information and support from others dealing with this.

Thanks!
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Snickers18




 
 
 
 

Post  Fri, Feb 21 2020, 10:59 am
amother [ OP ] wrote:
My child was just diagnosed with EoE. I'm feeling totally overwhelmed and looking for some information and support from others dealing with this.

Thanks!


So sorry to hear. Sad I don’t have any personal experience, but I know a family whose child was diagnosed with it over a decade ago. It was tough for them. I believe the child was mainly treated by specialists in Cleveland. Thank G-d, doing well now.
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amother




Hotpink
 

Post  Fri, Feb 21 2020, 11:14 am
I'm not so comfortable posting with my user name even though I don't post on imamother often but if you set up an anonymous email address I'd be happy to be in touch with you. My child was diagnosed with EoE over seven years ago. Would be happy to answer any questions.
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amother




Slategray
 

Post  Fri, Feb 21 2020, 11:25 am
My daughter has EoE, diagnosed 4 years ago. BH she's doing great, tho we didn't choose mainstream treatment for her. We had the go-ahead from her GI to do what we did and I don't regret it.
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amother




OP
 

Post  Fri, Feb 21 2020, 11:30 am
What sort of non-mainstream treatment did you go for?

I created EoEadvise@gmail.com I'd be thrilled to connect.

Thanks
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amother




Hotpink
 

Post  Fri, Feb 21 2020, 11:32 am
I'm also curious what kind of non mainstream treatment you did? Is your daughter getting scoped?
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amother




OP
 

Post  Mon, Mar 02 2020, 11:48 am
Hotpink and Slategrey? Hoping to hear more from you...

Thanks!
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amother




Seafoam
 

Post  Mon, Mar 02 2020, 11:53 am
My daughter has eoe, she is 3 and was diagnosed over a year ago. We did some scopes to narrow down the allergen and now have her on a gluten and dairy free diet which is manageable and working out great for her. Its scary and confusing but can be managed
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amother




Cyan
 

Post  Mon, Mar 02 2020, 1:27 pm
DS was diagnosed with eosinophillic esophagitis when he was first scoped at about 18 months. We already knew he had severe regular food allergies (milk and eggs- very severe, and milder to soy and nuts). He was still painfully refluxing, very underweight (I think 12 lbs) and anemic, even though we were very strict about avoiding all known allergens . We did EoE skin testing (metal disks on skin for 2 days) with Dr. Spergel at CHOP and ds reacted strongly to rice. Howevever, after strictly avoiding it for several months the next scope still showed >40 eos/hpf. The assumption is that a lot of it is due to environmental allergens, but even with temporary steroids ds was still too uncomfortable to eat enough.

We finally had a g-tube inserted at 27 months and ds got nightly Elecare feeds to help him gain weight and catch up in growth. At that point we felt like it was a last resort because ds was so underweight but it was the best thing we could have done. DS started gaining, growng, and developing.

Now he is BH able to eat (strictly avoiding allergens, of course) though he's still pretty small. He no longer complains of pain, just very occassional heartburn. He gets scoped every year or 2 to monitor for esaphageal damage. BH it's still okay but scopes always show >40 eos per hpf. In DS's case it seems clear that this is another manifestation of his severe allergies (Eczema, asthma, hayfever).
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amother




OP
 

Post  Mon, Mar 02 2020, 1:29 pm
My daughter is on Elecare exclusively right now, and with the long list of things she tests positive to, I'm not confident I'll ever get to a normal diet. I know, I need to stay focused on the here and now and not stress out about how I'll send her to kindergarten drinking elecare... As long as it was 'just allergies' I kept telling myself that most kids grow out of a lot of them, but with this, now I feel like its a 'life' sentence.

But even right now, the babysitter is having a hard time keeping her away from all her allergens, and even at home, keeping her in a safe environment feels so super overwhelming!
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amother




OP
 

Post  Thu, Mar 12 2020, 3:43 pm
So on the advice of our GI, I'm supposed to be keeping DD away from any speck of food, but she is still vomiting. I can't figure out what is triggering it. Is there any harm/danger to the vomiting or it is just a symptom that her Esophogis is still severely enflamed?
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amother




Cyan
 

Post  Thu, Mar 12 2020, 4:30 pm
DS's allergist and gastro think a lot of his triggers are environmental- just from breathing allergens- and can't be avoided.
The vomiting is definitely a symptom! If it's very frequent the stomach acid can cause erosion. Prevacid/ prilosec/ nexium do help with this by reducing the acid.

We didn't see much benefit from oral liquid steroids but the doctors said some patient were helped by using it temporarily to get the inflammation under control.

Refuah sheleima!
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amother




Natural
 

Post  Thu, Mar 12 2020, 5:47 pm
It is not a "life sentence" per se. Majority children with this diagnosis lead regular lives and go to regular mainstream schools. Many get a para to help avoid the child eating foods not allowed, until their order. Most children who have coplications, haVe other diagnoses ask well. My child is on neocate but more are on elecare
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amother




Hotpink
 

Post  Thu, Mar 12 2020, 6:17 pm
Not to argue with all of your doctor's but why aren't any of the another's above giving medication so that your children can eat food and go off of the elemental diet. I so much regret the six months my child was on an elemental diet. Food especially for children is so important socially. I know a lot of the gastros are not pro this approach but honestly I felt like my son was a lab rat when they wanted to scope every three months.
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