|Sep 29, 2009|
Results in from scope, EEWell, finally heard back from the Gi nurse last night, and the official Diagnosis is EE. They want to treat it with an inhaler of steroids swallowed instead of inhaled.
Anything to make it stop of course, but I did ask about allergy testing or eliminating some items, she is checking on that and will get back to me.
Silly me, I just kinda thought that finding out and eliminating what is causing this reflux would be first priority. So then I guess that maybe they want to bring this under control and THEN try to figure out what the cause is? If you think about it like an asthma attack, they treat the asthma first and then look for the cause. Does that make any sense in EE? I guess tomorrow we will start the inhaler and continue the Prilosec and go on from there. That's the frustrating thing with not talking to the Dr. directly, I can't get my questions answered right away. Does all of this sound all right? I guess if it ends up the GI doesn't want to do allergy testing then I will finagle my Ped into ordering a skin patch test. I guess that's my plan of attack at the moment, do the steroids, prilosec and work on getting allergy testing done. ANy thougths or advice would be wonderful, I wanted answers but I really didn't want the answer to be EE, but who does? :)
|Sep 29, 2009|
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 know this Mother from another board, that has a website she made for her DD. She also has youtube videos as well. I will ask her before I add the link but her website has lots of info on it. She hasn't updated it in a while, but it will have useful info for you.|
|Sep 30, 2009|
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, my son is 3 1/2 and was dx'd with EE last summer. We knew all along he had severe "reflux" and food allergies, but even after removing the foods he tested positive to on scratch testing, he still choked way too much, so we rescoped.
EE is a tricky disorder in many ways & it's hard to believe but quite a few pediatricians, allergist, & even GI don't seem to know what they should about it. My first advice is to find a Children's hospital or center with an eosinophilic department or at least, doctors who are very knowledgeable about it. Secondly, I really recommend joining kidswithfoodallergies.org. They have an eosinophilic section you can click on under Forums. You can go there and read everything even without joining. Important things to know: EE trigger foods are not the same as IgE food allergies. Regular testing will not weed them out. Patch testing is for that, but with so-so success. Some kids have an environmental component to their EE, but 98% of kids clear on an elemental diet, which means this disorder is mostly triggered by food. There are two main ways of treating (there is currently no cure): swallowed steriods (which obviously has side effects, as all steriods do) or by figuring out which foods trigger the white blood cells (eosinophils) to attack an area that they shouldn't be. We are chosing the second option. Some kids only have a few trigger foods, like wheat, dairy, and beef. For other kids, it may be nearly everything they eat. We went on an elemental formula only for a couple months, scoped - got a clean scope, then introduced 5 foods: banana, sweet potato, pears, green beans, & apple. He just had another scope Monday & we are currently waiting to see if these foods passed or failed. It is a long process. Anyway, if you have any questions feel free to ask me. El|
|Oct 03, 2009|
hmmmmThanks to you both..... I am thinkinf of getting him in to CHOP. Part of me wants to just do the Flovent for two months and see, but a bigger part of me knows all I have read that tells me that once the Flovent is stopped the EE will come back. Sigh.
Do you think it hurts anything to do the Flovent until we get into CHOP? At the very least, he might have a clean scope in a few months in order to start as a baseline to start some sort of diet???? I looked and looked, and in my area, there just doesn't seem to be anyone who specializes in EE. I just am dumbfounded how the GI could tell me thaat four months is curative, when everything I have read says otherwise....... Thanks again, and I would love a link to that blog if allowed,thanks!
|Oct 04, 2009|
|First off, I am really sorry that you have to go through this too. As hard as it was for us to deal with reflux, and aspiration pneumonia and then life threatening food allergies, it has been even harder to deal with EE. I agree with going to the kids with food allergies web site and looking into the section for EE disorders. The message board is a wealth of information. I'm not sure how old your child is, but mine is 15 months and our GI recommends going elemental only for a while to see if we can get it settled down without steroids. Seeing that he wasn't able to eat very many foods in the first place due to severe allergic reactions and choking on anything with texture, that was the route I was most comfortable taking. Our GI also got us into an allergy dr so they could start allergy testing as well. The allergy dr wants to start food trials ASAP but I want to wait until after the next scope to see if the neocate only diet worked and the GI thinks that is best as well. Every child and parent is different, so you just have to do what you are comfortable doing. I don't want to rush foods and use steroids only to have to go completely formula when he is older and likes food. So my thought was to do it now while he is used to drinking formula. I would insist on talking to the GI myself and make sure you have a list of questions written down so you don't have to keep calling back for more answers. If you are not happy with the answers, start looking for a new GI. Heaven knows you will have to deal with them a lot in the coming years, so you better find one you like and trust.|
|Oct 13, 2009|
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
|Hi, I don't know if you're still reading your replies, but please e-mail me at firstname.lastname@example.org if you are. I know a lot about EE, and can help you with all this.My 6yr old has EE, reflux and asthma. He is on Prilosec and Flovent and doing well now and eating a lot of foods.||Check with your