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 Post subject: Eos Primer
PostPosted: Wed Mar 22, 2006 10:59 am 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
This is from a friend who is a member of Kids With Food Allergies, inc, (http://kidswithfoodallergies.org/) and she has given me permission to post it here. It took years for her daughter to be diagnosed, and in the meantime the poor child suffered immensely.

Eosinophilic disorders are not that well understood at the moment, and it can be extremely challenging to get a good diagnosis. I thought I would post this info just in case it helps anyone who is having challenges finding out what is truly wrong with their little ones.

Pay close attention to the symptoms and you may say "aha".

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From Amy H:

Eosinophilic (ee oh sin oh fill ick) disorders occur when the body reacts to trigger(s) by creating too many white blood cells (eosinophils) which hang out in inappropriate places creating trouble. White blood cells target germs and other invaders; in eos kids, they recognize normally harmless things as *enemies*.

This is a disorder which must be diagnosed by a good pediatric GI. It must be diagnosed via biopsy. It is NOT possible to rule in or out with a blood, urine, or poop test, or by waving a magic wand.

Symptoms include any of the following; only ONE is necessary to justify testing.
- vomiting
- diarrhea
- abdominal pain (which the child may not recognize - a child who grows up in pain assumes it is normal)
- FTT (failure to thrive)
- GERD/reflux

Eos kids also frequently have eczema, asthma, and multi-FAs (diagnosed or not - eos kids may test negative to everything).

There is solid medical info at http://www.apfed.org and http://www.cincinnatichildrens.org (click eosinophil in search). A research packet can be obtained by contacting Sean Jameson at Cincinnati. There is a support group in yahoogroups - eosinophilgastro.

Eos disorder is classified by where the eos hang out. So, a child may have eosinophilic esophagitis, eosinophilic colitis, etc.

My hard-won expertise is in eosinophilic esophagitis and may not hold true for disorders further down the GI tract. This is a good start, though, and moms here [at Kids with Food Allergies] can point you in the right direction.

The goal is to determine & eliminate the trigger(s). This is made more challenging by the fact that there is no test for eos triggers.

Generally, the first stop is to do standard allergy testing and remove those items. If the child is not 100% better - both symptom-free, and having a clean re-scope - in 2-3 months, you need to move on.

Further steps may include either patch testing or trying swallowed Flonase. Patch testing is essentially placing the food item directly on the skin and covering it for several days to permit delayed reactions. Flonase is a steroid; swallowing it is designed to minimize reactions. Neither worked here, so I am skeptical, but they have worked for others and may work for you. Do not do either for more than 2-3 months if they have not completely resolved the situation. (This is my mantra since I spent 2 years on step 1.)

The next step is to go no-food, elemental formula only. Yes, this seems extreme, weird, too-much, and for sicker kids. I thought so too. It saved my child and our mutual sanity. This permits the tummy to heal. If this works, and symptoms & scope clear, then foods can be reintroduced one at a time, slowly, 3 weeks per food. While some children react relatively quickly, others take up to 3 weeks. My child healed at this point.

The elemental formulas taste nasty. Littler kids may drink it. My daughter was 9, and we used an ng tube, which was easier than it sounds.

If the above steps do NOT resolve your child, your eos trigger is likely not food(s), or not only food(s), and I personally highly recommend heading to Cincinnati where your child will not be *the only one I've ever seen like this*.

If you want our personal journey to an eos diagnosis, read Eos Diagnosis - Annika's Journey (http://kidswithfoodallergies.org/groupee/forums/a/tpc/f/2540057262/m/5140013673/r/5140013673#5140013673).

(Note from Karen: You will have to join KWFA to view this part, but there is no cost to get access to the main forum.)

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There are a number of parents with a lot of experience with Eos disorders at KWFA, so if this is something that you think you might need more help with, I encourage you to consider getting an associate membership with KWFA - with that you can view all the info on the main forum (including info on Eos) for free.

Karen

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Tue Jun 20, 2006 6:55 pm 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
Do you know if eosinphilic esophagitis is hereditary? I have it, and my son has had reflux since birth and food allergies. They are doing a scope on my son to see if he also has allergic inflamation. I don't want him to have to go through the scope, but I guess it's necessary. I also don't want him to have to go through the same problems I do with the life long reflux, allergies to everything, that feeling like something is stuck in my throat all the time. I just want him to be healthy. :(

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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 Post subject:
PostPosted: Tue Jun 20, 2006 10:26 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I don't know, I'm afraid.

I guess the one "good" thing about your son having similar conditions is that you know what he is going through and can sympathize and help and truly know how he feels.

I sometimes wish I could inhabit my kids' bodies (even for just 24 hours) to make sure that they feel okay. I worry, especially with my oldest, that he feels rotten much of the time, but to him, that's "normal", because it's all he's ever known.... :?

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Tue Jun 20, 2006 10:57 pm 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Quote:
I guess the one "good" thing about your son having similar conditions is that you know what he is going through and can sympathize and help and truly know how he feels.

I sometimes wish I could inhabit my kids' bodies (even for just 24 hours) to make sure that they feel okay. I worry, especially with my oldest, that he feels rotten much of the time, but to him, that's "normal", because it's all he's ever known....


I feel this a lot. Our daughter at 4 1/2 doesn't aways have the words to say how she feels. I keep toying with the idea of developing an interactive book that helps young children express themselves.

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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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 Post subject:
PostPosted: Wed Jun 21, 2006 11:57 pm 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
I guess that is one good thing, that I can relate to him. But on the other hand I feel guilty because it is MY genes that made him tihs way.
I can usually tell if he is having problems because he grabs at his throat, pulls at his shirt collar, and I can hear him gulping. Sometimes he will shake when he eats, or take a few bites and reject the rest. I feel bad. I don't like to see him in pain. :(

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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 Post subject:
PostPosted: Thu Jun 22, 2006 6:57 am 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Quote:
I feel guilty because it is MY genes that made him tihs way.


You are no more guilty of intentionally passing your genes to him than is the loved one who gave them to you. :)

_________________
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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 Post subject:
PostPosted: Thu Jun 22, 2006 1:09 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I agree, Susan.

I know it's hard not to feel guity, shai, but think of all the things you love about your child -- odd's are, some of those things came from you and your genes as well. :)

I like to joke that even though my oldest has my impatience and my loud voice, he also has my charm and good looks. :lol: So we give them what we give them, and some of it's good and some of it's not so good. Not much we can do.

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Thu Jun 22, 2006 11:55 pm 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
I know I shouldn't feel guilty, but now the pediatric gastro doc is doing a scope on him in less then two weeks. I hate putting him through this, but since he has been on reflux medicine since he was born and has had this milkallergy since he was a couple days old, they want to make sure he doesn't have allergic inflamation like me. I'm scared of having him sedated, and of the scope going down his throat. He will be so mad at me. He is only 2, but he knows what's up. He didn't talk to me for half a day when they drew his blood! Any time I tried to talk to him he would boohoo and whine and not look at me. I felt terrible. I know it's for his own good, and we need to see what's going on in there, but I wish there was an easier way.

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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 Post subject:
PostPosted: Fri Jun 23, 2006 12:28 am 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Shai,

Whenever my kids go through medical related stuff (my oldest daughter also had surgery at age 2 for something non-allergy related...and lots of x-rays and doctors appoinments that went along with it) we traditionally go to toys r us afterwards to pick out a toy. Nothing too expensive, but enough to have something to look forward to about the doctors visit.

My oldest was actually excited about her allergy tests last fall, 'cause she knew that the toys r us trip followed the appointment!!! During the 90min drive to the allergist it was nice to hear her excited about the toy she wants to get, instead of having her stressed about what will happen at the allergist.

_________________
DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.


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