uKnow Peanut Test

Started by Jenmag7, March 01, 2012, 01:06:45 PM

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penelope


Lisa

Aetna covers 281 of the 320 charge as per my allergists agreement with them.   It was listed in the claim summary as specific ige allergen testing.  I don't know that the name brand u know is covered. But certainly the generic equivalent is through aetna.  I find it very useful just in light of the fact that we haven't had a reaction in three years..you start to doubt the reality of the the original diagnosis or reaction.  And now I know it will be the same every time.  I went into this committed to paying out of pocket and was pleasantly surprised that it was covered...but I would have paid....its that valuable to me.

ajasfolks2

#32
Woot!!  :thumbsup:  Thank you all for adding input -- please keep it coming.

Wanted to say to Advocate -- in Jan 2000, after our oldest child's biphasic ana reax we saw top allergist for area and were told then that RAST were "not so dependable" and "not worth our while" . . . ETA -- my point being it took a few years for RAST then newer/better IgE testing to become "mainstream" such that allergists would order and insurance would cover.


Let's see where this test goes and where it takes us!

Keep the info coming!

Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

penelope

Lots of confusion on FB about RAST, Immunocap and component testing.
RAST is the old version.  If you'd have blood work done in the last few years it was likely Immunocap IgE.  Here's what a medical rep for Phadia said on another post:
RAST is older than Immunocap, but both tests get an IgE number. Levels are NOT important, only used to look at "likelihood of reaction"...that's it, not type of reaction etc. Allergists will STILL call all blood IgE tests RAST, even if it was Immunocap FYI(habits)

The new component testing (uknow peanut or isac panel) are not the same as the blood tests we've gotten for years.  They look at specific components within the allergen.
When determining to completely avoid an allergen we need to consider blood test, skin test and history of reactions.  IgE number doesn't tell you much but numbers from component testing does. 
The more information we have the better. 

Mfamom

#34
Just scheduled this for my ds for may 10. 
The reason I am doing it is that we have had ana reaction (age 4).  but later, we have negative blood tests but big wheals on spt.  He has eczema and fairly sensitive skin.  Also, environmental allergies such as Birch.  No reactions since, he's now 14.
would be nice to have additional information that this test offers.
When People Show You Who They Are, Believe Them.  The First Time.


Committee Member Hermes

Mfamom

Quote from: penelope on April 12, 2012, 09:31:19 PM
We had the test done.  Traditional blood work tests can pick up birch tree pollen allergy as peanut allergy.  My child had not had a reaction in years, never had hives etc.  This test looks at the specific components within the peanut that are known to cause anaphylaxis.

I wanted to know with certainty the level of my child's allergy.  If the result was not allergic then I was going to back off on all my work with our school on allergies.  If the result was positive then I would know that I really need to push for the safety of my child while at school.

Depending on your insurance you might be able to get reimbursed for this test.  Didn't the result we were hoping for but I'm glad we did the test.

How long did it take to get the results?
and I'm sorry it didn't give you the news you hoped for
When People Show You Who They Are, Believe Them.  The First Time.


Committee Member Hermes

liseetsa

Hi everyone.  Someone posted a notice that you were discussing component testing so I wanted to give you our link:  well they won't let me join or post our link.  Please come to PEANUT ANAPHYLAXIS CURE on fb--the group.  We are all about desensitization and new component testing.  We have representatives from Thermo Fisher who are members and answer any questions they can.  We have all the forms and links in our document section.  Basically, I think you've covered most things in this discussion.  If you have already seen an anaphylactic reaction, you don't need to know so much--unless you just want to know.  You can bet they are positive to the most severe proteins--Ara h1, 2, 3 and in the U.S. they say 8.  The most important thing no one has mentioned is that the IgE # does not correspond to the severity of the reaction.  They could have a 2 and be anaphylactic (reaction to one or more of the high-risk proteins) and an 82 consuming handfuls a day without a reaction. (probably a non-high-risk protein).  I would never do a skin test since Eli's test came back negative and he is actually anaphylactic with a 2minute window of opportunity to inject him with the epipen.  He is now in maintenance phase of desensitization consuming 8 peanuts a day but still--if he were sick and we gave him the dose, he could have an ana. reaction.  So component testing takes any guess work out.  You can say to the teachers and/or family that you have TWO MINUTES and NOT IN MY HOUSE etc...  Never leave home or even play in the backyard without an epipen--can you get back in the house within two minutes?  It is sad that most doctors do not even know about component testing yet but most people do not even know about our food allergy epidemic yet or believe a peanut could kill you.  When Eli was first diagnosed, I researched everything I could and found that researchers were using component testing.  I was frustrated that the IgE could not give me the information I needed--what could?  At the time, Pirllab was not offering tests to the public but all I did was ask and they were more than happy to accomodate.  They weren't sure how to charge us but we worked it all out.  Our doctor drew blood and mailed it to their lab.  And we talked about how this information needs to be available to all parents with children who have food allergies because they need to know exactly what they are dealing with--- will they outgrow it?  Are we overreacting?  Some live for 18 years with only mild reactions then go on vacation and die in their parent's arms after eating a dessert cross-contaminated by peanuts.  Had they know Ara h1 or 2 or 3 (maybe 8) was at work, they would have known that at any point the reaction could be deadly.  Probably WOULD be potentially deadly and they needed that epipen!!!  So now they have made the test available to the public and it is something that will eventually phase out the old blood tests I believe.  What good are they now?  You appear to be allergic but we really don't know if and when or how you might react.  Well thanks for nothing basically--except INSPIRING me to live in absolute fear maybe without reason.  And if it is the worse case, I can work myself to a place where a doctor can treat him and take the threat of death away.  Information is power. 

penelope

We took the test on a Tuesday.  Our doctor got the results on Friday.  However, he was on vacation so had to wait another week to speak to him!
In all, it took almost 3 months from the time I asked the doctor about the test until we got the results.  Hoping that sharing our experience will save some time for those of you considering this test.

admin rebekahc

Respectfully snipped:

Quote from: liseetsa on April 19, 2012, 02:30:25 PM
I wanted to give you our link:  well they won't let me join or post our link. 

Who won't let you join or post a link?
  Our board welcomes people to join individually as well as in a business/commercial capacity.  Please Read RULES Before Posting in this Section should tell you all you need to know about joining in a "professional" capacity.

My suggestion would be for you to join our forum with your fb group name and make a post in the commercial section including the link to your group.  Then you are welcome to post in this thread linking to your post in the commercial section of our board.  We welcome you to join individually as well.

TX USA

ajasfolks2

Liseetsa!  Thank you so much & hope you will return and re-try registration.  Your knowledge on this topic and resources would be most appreciated.

~e
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

ajasfolks2

Just wondering if anyone has specifically arm wrestled Tricare for reimbursement on this one.

Our family is fortunate to be able to cover this cost ourselves if Tricare will not reimburse portion.

It would be very helpful to know if Tricare will cover for those thousands of military families who can NOT afford this test on their own.

I'm also wondering if those military familes who use Tricare Prime & MTF (military treatment facility) are gaining access to this test in any fashion.

If someone here has answers to that (direct know or personal experience) but would prefer answering via PM, that would be fine -- please feel free to PM me to discuss.

Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

twinturbo

We picked the test from the allergist's office just now. I'll take some pictures of it in case I can rig up some picture hosting to post it later. Two quick items up front - 1) The rep is giving us 30 days to complete for half price $150, so if you're going to get it done ask for a price break it seems quite negotiable right now. 2) The blood draw is going to take some calls and finessing because PIRL isn't interfacing with any of our local labs. What they want is to subcontract to a third party for a draw at our residence... on a young child. We're going to work on that to see if we can go to a lab that has considerable pediatric experience, our preferred lab. I'll report back on how that goes.

Anyway, I have yet to really crack open the box so there's more to come. The experience difference does seem rather regional with PIRL. Regardless, since the kids are still mutual patients of local doc and Sicherer I plan to send it to him for review. I'm curious to see what he'd say about the test, the results, etc.

ajasfolks2

Our allergist's office has told us that they send request to the child's pedictrician to do the blood draw there.
FWIW, both our allergist and our pediatrician practice are CIVILIAN and not at military base.  I have no idea how this is being handled for military family members who are using on-base facility and providers.

I'll post more once we've tried to get these for our kids.

Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

twinturbo

Earlier this week we called to negotiate our preferred lab for pediatric draws. They were very helpful and speedy on ok'ing our lab. What seems imperative to them is their protocol and as long as the lab follows it they'll work together.

ajasfolks2

So, can QUEST do the draw?

I'm not sure our ped's office will do the draw (they suck -- yes, I just said that -- )

Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

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