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PostPosted: Wed Oct 13, 2010 6:34 pm 
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Joined: Tue Oct 12, 2010 6:21 pm
Posts: 3
hello!
Soo much has happened in such a short amount of time.
My 4 1/2 year old son was just tested for suspected allergies to cat/dog, after 3 episodes of hives within two weeks, this summer.
we found out that he is allergic to both cats and dogs, feathers and dust, but he has an anaphylactic reaction to egg. BIG surprise to all of us!
since then we have also been seeing a ped. GI specialist because my son has also been throwing up, spitting back up or refusing foods and medication from birth. this week he had an upper GI scope and biopsy and the preliminary diagnosis is Eosiniphillic Eosophigitis (sp*). we will know for sure when the biopsy results come back at the end of next week.
Just wanted to see if any other parents have had to weed their way through EoE. I would like to get as much information as possible.
I am my child's biggest and best advocate! wondering where to start?
Thanks!


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PostPosted: Thu Oct 14, 2010 7:15 am 
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Joined: Wed Jun 17, 2009 9:23 pm
Posts: 129
Hi sounds like you have been through a lot lately!
Has you son actually had an anaphylactic episode to egg....or just had a big spt reaction? Anaphylaxis and allergy is diagnosed by real life reactions read in conjuction with spt/blood tests...it is possible to get big reactions on spt but be able to eat the said culprit without problem (my son has lots of false positives)...of course always follow the advice of the allergist!

The EE diagnosis can be very overwhelming at first-you may be lucky and manage it by eliminating the foods that show up on spt (egg if thats a new one?) or it can be more complicated...a lot of the treament will really depend on how your allergist/gastro chooses to manage it...we are treating based on symptoms not eosinopil numbers...but I know in the USA the tx seems to be very much based on reduction of eosinophil numbers...we have only minor symptoms and for my son (8yo) taking out the top 8 foods along with meat would be much much worse than the symptoms he's currently experiencing...so for us its yearly scopes and review as things progress.
Try not to get too ahead of yourself...good luck with the biopsy results
take care xx caz

_________________
twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.


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PostPosted: Thu Oct 14, 2010 9:08 am 
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Joined: Tue Oct 12, 2010 6:21 pm
Posts: 3
hi caz! thanks for responding!
no, my son hasn't had an anaphylactic episode to egg...yet! his spt result for egg was a 20. he has had at least two reactions to egg in the past...hindsight is 20/20. but, i think that because the spt was so high and because we had an appointment to see the gi specialist, that our allergist wanted to wait to see if we were going to be sent for blood tests for that, kind of wanting to get him tested for egg if he had other blood work done. because my son was going to be starting school and we wouldn't be monitering his food intake the entire day, i think that the allergist thought that an epi-pen was a good idea.
we have tried to take all egg out of his diet. this is a much easier thing for me to do , then it is for others, which also includes his dad. in all this...i think that his dad is my biggest opponent and toughest critic. i can work as hard as i possibly can to cut out egg, but if i'm the only one doing it then we might not really know what my son is reacting to. i just thought that if i could at least get everyone on board with that, then it would be a great start. it has been very difficult. that is why i am so overwhelmed.
we really haven't figured out how severe the egg allergy is and how strict we need to be with my son's diet. but now we are dealing with possible EoE (EE). i guess that we continue with the egg free...and wait for the biopsy results to come back. should i request a blood test for allergies if the specialist or allergist don't? i'm not sure if they need to do one for EoE? i like to be prepared at least a little...plan ahead...single mom with 2 boys...requires a bit of work to find help with babysitting and get to appointments.

thanks again!
i appreciate it!


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PostPosted: Fri Oct 15, 2010 6:58 am 
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Joined: Wed Jun 17, 2009 9:23 pm
Posts: 129
hi-if your allergist thinks an epipen is a good idea then he believes he has the potential for a lifethreatening allergic reaction to eating egg..this means no egg at all-full stop! You need to be saying 'lifethreating' death' fatal etc to people (his dad) who think its ok to keep feeding it...it also will impact on the EE if this is one of his triggers.
You really need to sit down with the allergist and ask what you need to do=no egg...cooked egg...etc. Get a firm plan and stick to it. A food challenge is a good thing (done under allergist supervision) if you are not really sure what the reaction to eating only egg is-it will give you an idea of the severity of it (but having said that 20 is a big spt reaction)

EE tends to be more often delayed food allergies (IgG)-so often its really hard to work out what is causing the inflammation in the oesophagus because the food doesnt cause an immediate reaction-it can be many days-so..spt and blood tests are often not diagnostic in EE-patch testing is often done (the food is applied to a patch and stuck on the back and left for 48 hours-gives a dermatitis type reaction or delayed reaction)my son doesnt have any spt reactions (to food or environmentals) but has +ve patch test to wheat soy dairy and egg=he shows no outward signs of allergy unlike his twin who is very allergic.
Ultimately the treamtne of the EE will be at the discretion of the allergist/gastro=it is still a realatively new disease so there are a number of appoaches-those who aim to achieve no eosinophils...or those that aim to have no symptoms...presently we are going with the symptom approach (we had eosinophils of 66-high-but very little in the way of symtpoms-it really depends on your dr. You will find lots of info on the internet...but beware-some of the treamtents are VERY extreme depending on where you live (tube feeding, severe elimination diets...obviously if you have lots of symptoms then these are things that need to be seriously considered)
If I were to do anything..I would try to find a specialist in EE in your state or country that can guide you-you do really want someone knowledgeable in the condition.
cheers=caz

_________________
twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.


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PostPosted: Tue May 22, 2012 11:49 pm 
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Joined: Mon Sep 05, 2005 12:53 am
Posts: 373
Location: Alberta
My almost 12 yo ds had a scope today, and it's pretty textbook EoE apparently. Will know for sure after biopsy, but they gave me the pictures and his poor tube is covered in white patches :cry:

Explains ALOT of what he's gone through over the past 12 years, starting with horrendous reflux as an infant through his "picky eating", random episodes of vomiting, and failure to put on weight the past few years as his friends blew by him in growth. GI wants him to start with swallowed Flovent for now, and re-scope in 3 months to see if it's improved.

Possible trigger might be the baked milk that he's on, as we've really noticed the food impaction since we began doing that. We're hoping that's not the case, as it's his best chance of trying to rid him of the milk allergy, which is his most severe.

His allergist has no idea about any of this! Wondering if I should book an appt to let him know or just e-mail him the photos.... or just wait until our appt with him next year, and do an "Oh, by the way ... "


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PostPosted: Wed May 23, 2012 8:04 am 
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Joined: Wed Jun 17, 2009 9:23 pm
Posts: 129
im sorry to hear of this diagnosis for your son....but it is good to have a name to put to it and some sort of treatment options. Hopefully the flovent will do the job and stop all the inflammation. Good luck :huggy

_________________
twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.


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PostPosted: Wed May 23, 2012 10:22 am 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 919
Location: Oakville, Ontario
Momtobunches, I'm so sorry to hear about your son! My goodness... you must be reeling from this. I would definitely want to see the allergist before next year. I wonder if you can call the office and speak to the nurse?? The reason I'm suggesting this is because our son's allergist (Dr. Susan Waserman) allows for calls into the nurse for these types of after-appointment (or between appointment) questions. It's worth a call... you never know, maybe you won't have to actually go in for an appointment. But, if that doesn't work, I would want to make an appointment so you can seek more information/guidance. Next year is a long time from now.

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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PostPosted: Wed May 23, 2012 3:08 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2928
Location: Toronto
Momtobunches ... So sorry to hear.

Yes, EE has been shown as a side-effect in some OIT desensitization cases (saw a study on this from Italy not long ago). You'll want to report it to your allergist ... just in case it's involved here.

Again, sorry to hear, though hope at least your son begins to feel better.

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Tue Oct 02, 2012 11:45 pm 
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Joined: Mon Sep 05, 2005 12:53 am
Posts: 373
Location: Alberta
Well, after several months of swallowed Flovent - and continuing on the daily baked milk cupcake - we went for the follow-up scope today. The doc came out of the OR and told me that if he didn't know differently, he'd think he was looking down a perfectly healthy esophagus!!!! :happydance Still have to wait on pathology, but he said it appears ds is one of the group of kids that responds well to the swallowed Flovent. Doc may take him off of it in the next few weeks if pathology comes back normal, but we know this is likely something that will continue on and off for life. Best news for the doc was the "clinical" response - ds has put on 7 pounds since the 1st scope in May, eats with gusto, and no longer needs to take sips of water with every bite!! Taking into account a sudden bout of appendicitis and emergency surgery in June which caused him to lose several pounds, he's done better than expected.

So happy that the baked milk stays! It gives us hope!


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PostPosted: Wed Oct 03, 2012 8:58 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2928
Location: Toronto
That's great news. Big congrats to you. :huggy

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Sun Oct 07, 2012 3:55 am 
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Joined: Wed Jun 17, 2009 9:23 pm
Posts: 129
Momtobunches wrote:
Well, after several months of swallowed Flovent..... The doc came out of the OR and told me that if he didn't know differently, he'd think he was looking down a perfectly healthy esophagus!!!! :happydance


YAYYYY for swallowed steroids. You must be really happy to be seeing such an improvement and especially the weight gain.
:thumbsup

_________________
twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.


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PostPosted: Sun Oct 07, 2012 2:27 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6429
Location: Ottawa
:mrgreen: :bouncygreen :banana :banana :huggy :bouncyblue :happydance :happydance

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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