Posted By Posting
Sep 22, 2009
johnniesnewmommy
Johnnie results EE
Hi Everyone, Well we finally had the endoscopy last friday and the GI called tonight to say that he had the results of his biopsies in. He said he has the most severe case of Eosinophilic Esophagitis that he has ever seen. He has taken him off all food and drinks with the exception of his neocate formula. He had such a severe allergic reaction in the waiting room at the hospital, to a woman who opened a bag of peanuts near us that it took several hours to get it under control enough for them to sedate for the scope. His reflux is still horrible but the nexium is working to keep the acid damage to a manageable level so we are sticking with that for now. He is going to try to get him upped on the waiting list for the allergist, it's a 9 month wait to get in. So until then we are stuck with just the neocate. Is anyone else out there dealing with this. We have been trying to manage the food allergies as best as possible but the GI said that it's not enough, no more food.
Sep 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Im sorry that Johnnie has EE, but now at least you have a solid direction for treatment. My son has severe EE, and also eosinophilic colitis, and probable EG as well. He has been on elemental only a long time, but he also requires constant steroid suppression for treatment of it, he has been on the steroids for it well over a year now. His is influenced by foods, but also immune dysfunction which is why he requires constant steroid treatment..HUgs!
Sep 22, 2009
mommy2k
I just wanted to give you hugs. I'm sorry that you all are dealing with this. I'm glad they finally found out the reason for all of the struggles that you've been having with him. Good luck. Thinking about you and praying that Johnnie starts to do better on the neocate. Poor guy!! Answers are always a good/evil thing...want answers but the answers we get aren't always the easiest to handle.
Sep 22, 2009
johnniesnewmommy
Jessicalynn, I have so many questions! Johnnie doesn't eat many foods but he has started eating a few finger foods and will still eat a few stage 2 foods, but GI said absolutely nothing but the neocate, not even juice. I didn't think to ask about thickening the formula with rice cereal. Do you thicken the neocate still and if so what do you use? GI wants to rescope in 3-4 months after he has been on the neocate only to see if he is improving otherwise he will start steroid therapy as well. He is trying to get him in to see the allergist but the wait is 9 months, so I have no idea how long it will be before we even get through the door. I am scared stiff to do the allergy testing (skin test) because just being in the same room as peanuts can set him off and if any milk touches his skin he welts up and has trouble breathing. How have you handled this? How do you manage to keep him from wanting to eat when everyone else is? Is there a way to thicken the neocate into a paste kinda like cereal so it can be spoon fed as an option? You said immune disfunction, we did a bunch of blood tests for immune disorders when he was about 4 or 6 months and they all came back normal but is there something more specific they should look for? Im sorry im overloading you with ?'s but I don't know who else to ask. Even the doctors that I know, know nothing about it.
Sep 23, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I am soo sorry you are dealing with EE.

As far as trying other things, I really wouldn't until you get rescoped. They are going to want to see a clean clear scope prior to doing food trials one at a time. Some kids even get rescoped after each food trial so see how the body reacts to it.

As far as dealing with life with a kid who can't eat "normal" meals, I have heard of other families with young kids trying to just not eat around their child. I am sure it will be sooo hard for you all to do.

As far as getting seen faster than 9 months......can you call that clinic and get put on their cancellation list??? We did that with our local rehabilitation center that deals with dysphasia kids like Jedd was. We got in about a month and a half earlier than expected. You have to be willing to go in when they call though. They can call and say, can you see us tomorrow??? LOL

Sep 23, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hi! I'm sorry to hear the dx was EE, but I want you to know that you are NOT alone. This condition is being diagnosed a lot more these days. Before they chalked it up to things like severe reflux with food impactions and damage. My son has EE, asthma, environmental/seasonal allergies, reflux, plus deadly food allergies (such as peanut, dairy, egg). We suffered for a long time, with various dx's, until I pushed for ANOTHER scope & they found it. Ok, first of all, I'm not sure where you live, but are you near a children's hospital? We go to Children's in Philadelphia. They actually have an eosinophilic department, where we see his allergist, nutritionist, & they also work with his GI (who will perform scopes as needed). I wouldn't want to wait 9 mths. If you have to, keep him on the Neocate (do not thicken). Keep in mind: regular food allergies are different than EE trigger foods, although a single food may be both. For example, dairy can be positive on scratch or RAST (blood) testing, which can cause severe symptoms & it can also trigger eosinophils to attach the esophagus or stomach (but this is more of a delayed reaction). So, the child may TEST negative to wheat on standard allergy testing, but the food can still trigger EE. Removing the top 8 allergenic foods, plus a few others they find often trigger this condition, can put the disorder in remission is 75% of the kids. A strictly elemental diet (Neocate) usually clears 98% of the kids. In our case, after testing (including patch testing) we fed Eric what was left. After scoping (again) his levels were still way too high. We put him on nothing but Neocate for a few months. Then scoped - found only 9 eosinophils in the esophagus (this is acceptable). We then started food trials in June. He has been eating banana, sweet potato, green beans, pears, apples. His next scope is Monday. If he has 14 or less eosinophils, it will be a pass. We will then into. 5 more foods & so on. If not, (don't want to go there), we will see what they want us to do. My best advise: go to kidswithfoodallergies.org. Click on Support Forums: then, eosinophilic disorders. You can read everything for free. If you join, you can post. Lastly, I won't kid you, this isn't a walk in the park. It isn't something that is normally outgrown. But, for some kids, they only have 3 -4 trigger foods & once they find those foods, they can put a diet together around that, plus any deadly food allergies they may have. Plus, they are developing new drugs - one may be available next year. This is a fairly newly recognized disorder. For even more info. see: APFED.org. Also, feel free to ask me anything. Ellen
Sep 23, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
PS. just wanted to add - def. don't thicken with anything. Wheat/rice can be big triggers. Does he have an Epi-Pen for those contact reactions? Also, my son is use to us eating around him & even going out to restaurants. I always say - the doctor wants you to do this or that to heal your throat. He will sometimes say "I can have muffins when I'm bigger" - like he use to - this is sad. But, he handles it better than me. We will let him have one of his foods at dinnertime, or when he was elemental only, they let him have DumDum lollipops. So, he could have his bottle at the table, then a dumdum. I'm sure it could be much worse for an older child who is used to eating a lot, but these little ones except it much easier as a rule. El
Sep 23, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Crude!! That stinks!!!!! So sorry! Lots of hugs to you. You can do this. You are one tough momma!
Sep 23, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

We don't thicken, Brent is jejunal tubefed only though,nothing by mouth, due to severe esophageal/GI dysmotility and chronic aspiration,not just his EGID. If I were you, I would not thicken with rice cereal because it CAN be an EE trigger. I would avoid adding any thickeners if you can because the ingredients may be triggers.

I hope you don't have to wait 9 months to get in to see the allergist, wow, what an awful wait! Ellen gave some good advice about the allergy testing, IGE allergy triggers arent always the same as EE triggers, so even though he may test negative that doesnt mean it's not a problem. My son tested positive to milk, and on patch testing tested positive to several more foods, but yet all foods are his triggers.

We mainly use distraction, feed the other kids and take Brent somewhere else. But Brent hasnt really ate for a long time, so it isnt as hard on him, KWIM..Neocate makes this new stuff that is safe and is for spoon feeding, I think it's called neocate nutra.

Brent's is thought to be like an autoimmune disorder,immune dysfunction, he has a weak immune system and many other health problems, the EGID is one of his minor issues right now because it is in remission with the steroids.He has dysfunction of many bodily functions,He also has dysfunction of the autonomic nervous system and connective tissue, and this is all though to be coming from mitochondrial disorder, so a little bit different for us, I dont think there is anything else they should be looking for in terms of that.

Check with your
doctor first!