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test results.. i am very overwhelmed (update in red)

Posted by on Feb. 13, 2009 at 4:32 PM
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uh i feel like crying!!!!!!!!!!! Keegan will be 3 in may....

well... off to the allergy specialist we will go....
his blood work came back for alot of allergies. i knew he was allergic to egg whites and peanuts... heres teh results...
Firstly she said something about normal allergy range for food is about the 60 range, keegan is 974


the big ones that hes allergic to:
Barley
Chicken
Fish
Oats
Egg Whites
and Wheat

The smaller ones:
Corn
oranges
peanuts
pork
soy
potatoes
tomatos
chashews
walnuts

First off.. im so overwhelmed by this i want to cry. i feel bad for him. what is he gonna eat.. beef and carrots and cheese for the rest of his life? everything has wheat or soy. eggs was hard enough now this really??? she said not every allergy is my tummy hurts and vomiting or hives, it can be respitory, coughing , wheezing , runny nose, skin irriation, increasing his ezcema etc...
wow..
Lord help me please
no wonder he is always coughing, throwing up or saying his tummy hurts.. THATS OUR WHOLE GROCERY LIST!
____________________________ _____________________________________________
UPDATE
 
Well since i wrote this post in Feb. alot has happend!  I ended up emptying my whole pantry and getting rid of all the stuff he couldnt have into boxes and giving it to my sister! And filled it with stuff he could have.  cooking has gotten alot easier and ive invented some awesome delicious dinners! HAHA
 
We had his allergist appointment  last week  and it turns out that Keegan does have asthma and they are 90% sure that he has Eosinaphilic Esophogitis (EE). they also gave us some good tips to keep his ezcema under control.
 
He was put on Polmocort through a nebulizer for every day, and albueterol for when needed. We also had to get Jr. Epipens.
 
Since we had cut out all the allergy foods for a month, they want us to put them back into his diet for  a month because they need to do a endoscopy and a biopsy of his asophogus to diagnose EE.  and with him being off the foods, the eosiniphils that build up in the asophogus and the GI tract tend to heal. So for them to get a good read they want to make sure , if he has this, that hes had  enough time to build up the eosiniphils again. Which is bitter sweet. because we can eat the foods we love again, but we'll be dealing with coughing tummy aches throwing up and diarrhea. They dont want him to have his dangerous ones, eggs, chicken, peanuts, and treenuts.
 
he doesnt seem to want to eat much becuase we think it makes him feel yucky.
 
they also put him on Carnation breakfast because hes is almost 3 and since he turned 2 he hasnt gained anyweight. hes been about 29 lbs for a year.
 
His Endoscopy is scheduled for April 22nd and then we go from there.
im glad we have one of the best allergiest in the country cuz this is gonna be a long road!
After the Edoscopy we have to follow up with his allergist and they will  do tests for celiac disease, the skin prick test and some other tests.
 _______________________________________________________________________
 
UPDATE AGAIN April 23rd
Well Keegans Endoscopy was CANCELLED!
For 4 days Keegan was having a fever of 103.7, coughing and runny nose. I called his Pedi. and they said to make an appointment and bring him in.
On day 5 we took him and the Pedi said that its just a virus, upper respitory infection. If the fever doesnt go away by friday he wants to see him again before the weekend.
He told me to bump up is Pulmicort to 2 times a day and Albuterol 2ce a day also. He said that will help with his coughing and keep his airways open since he is Asthmatic and colds / respitory infections increase asthma. he also told me to call the Gastroentrologist and check ahead of time to see if they would do his Endoscopy with him having a cold just to be safe. (this was on Monday)
 
So i get a hold of the Gastroentrologist on Tuesday and play phone tag all day. They ask me if he has been having fevers.. yes.. the last one was at 3am.. yes he just started having diarrhea and yes he has coughing and runny nose. So since he didnt have a fever yet.. which could have been the motrin in his system they wanted me to check his temp at 11am and call them back. 
they ended up calling me back 30 mins later and telling me that they are going to cancel because of the fevers and diarrhea and they want to do it when hes feeling better.
They called later and its now Scheduled for May 13th. a day after his 3rd birthday.
 
Keegans Allergist called and reminded me i had an appointment for Wednesday .. which i totally forgot about and we said ok we'll be there.
It was origonally for after the endoscopy.
 
so we go to the allergist, and he tells us to take him off the pulmicort because they use that to treat Eosinaphilic disorders and it does seem to help sometimes, so they want him off it until after the scope. So that they get a good read, to the extent it needs to be. And he also said to continue albuterol twice a day.
 
He feels the same way we do, like were treading water. The Endoscopy is 2 weeks from now. Its not too far away but we've just been waiting so long for answers it seems like. He said once we get the results back we can get keegan on a plan and see what we need to do to keep him happy and healthy. And go over the foods and things that he can / cant eat etc.
 
So 2 more weeks and then we'll be closer to some answers!
 
 
 
potts.lindsay. Get yours at bighugelabs.com/flickr
by on Feb. 13, 2009 at 4:32 PM
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Replies (1-10):
cinderella22_17
by Member on Feb. 13, 2009 at 5:57 PM

Awe, poor little guy! I wish I knew what to tell you, I am so sorry. Have you tried the FAAN website?? They helped me a lot. Also just check out books on allergies from your local library, I have truly learned a great bit of info from just that.

He can have fish as a protien?  Can he eat rice?

cinderella22_17
by Member on Feb. 13, 2009 at 6:00 PM

Also, Rice Dream might have a few products that he could eat.

Chandra034
by on Feb. 13, 2009 at 9:25 PM

allergygrocery.com  is a great website for kids with multiple food allergies, its a little expensive though.  I know it's overwhelming but soon youll have a system figured out, you'll know what works and what doesnt.  Good luck.

motherofhope98
by Member on Feb. 13, 2009 at 9:25 PM

DeBoles has several versions of rice pasta.  Rice chex.  Fresh fruits.

my son is allergic to eggs, cow's milk, soy & wheat.  So I understand what you are feeling.

Rebecca, Jordan Essentials, I.R.

Support your local economy. Buy from direct sellers & local farmers.
www.michigandirectsellers.com


MelisaAnderson
by New Member on Mar. 28, 2009 at 10:39 PM

My daughter tested positive to almost everything in the book! But just because they test positive doesn't mean they will have a reaction!! I highly recommend food challenges under a doctors supervision of course. We found out some reaction aren't bad enough to stop eating it. For example my daughter is allergic to green beans and we did the food challenge and the only thing that happened was black circles under her eyes! Other foods do cause her ezcema to flare, but our doctor also helped us learn to keep that under control. And since she had high food allergies and severe eczema they did a asthma test, which she tested positive to also :(... but we haven't experienced any symptoms yet!! My best advice is to find a doctor that truly studies and understands allergies, not a doctor that just diagnoses. We were diagnosed by an allergy doctor that didn't help us understand her problems, so we looked for another doctor... which was a GOD SEND... the right doctor makes a difference.

MSOmom
by Member on Mar. 30, 2009 at 6:53 AM

It is what it is.  Now, let yourself have a good cry and get over it.  You have to be strong and positive for your LO.  Focus on what he CAN eat.  Make a list.  From what you posted, it sound like he can still have: beef, fish, apples, kiwi, grapes, pears, strawberries, plums, carrots, peas, green beans, sweet potatoes, broccoli.....There are many things.  You'll have to break outside the box of your usual shopping list and spend some time at the grocery store figuring out what is safe.

motherofhope98
by Member on Mar. 30, 2009 at 7:56 AM

The lesser allergies you may be able to give him enzymes so that he can eat them and digest them properly.  Sometimes they test positive because the body isn't able to fully break down the proteins in the food. Enzymes can help with the process.

Rebecca, Jordan Essentials, I.R.

Support your local economy. Buy from direct sellers & local farmers.
www.michigandirectsellers.com


tomib
by on Apr. 23, 2009 at 9:32 AM

How did the endoscopy go?  When will you know the results?

Love2BMom
by Member on Apr. 23, 2009 at 3:48 PM


Quoting tomib:

How did the endoscopy go?  When will you know the results?


Aw thanks for thinking of Keegan!! i left an update in the post :)

potts.lindsay. Get yours at bighugelabs.com/flickr
SuperMom23
by Member on May. 5, 2009 at 10:35 AM
Wow, that sounds like a roller coaster and I thought I had it bad. What is he eating now? Have you tried the elimination diet? That will reduce the wheezing and you might even finally put away the neb and albuterol.
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