Food Allergy Support

Discussion Boards => Main Discussion Board => Topic started by: Jenmag7 on March 01, 2012, 01:06:45 PM

FAS has upgraded our forum security. Some members may need to log in again. If you are unable to remember your login information, please email food.allergy.supt@flash.net and we will help you get back in. Thanks for your patience!

Title: uKnow Peanut Test
Post by: Jenmag7 on March 01, 2012, 01:06:45 PM

Is anyone familiar with the new "uKnow Peanut ImmunoCAP Molecular Allergy" test?  I have heard talk about it and people saying how wonderful it is and how they can't wait to get it.  I read about it herehttp://uknowpeanut.isitallergy.com/ and I guess I don't understand the hype.  I already know my DS is allergic to peanuts.  I already know he is capable of having anaphylactic reactions.  Why do I need to know exactly what parts of the peanut he is allergic to?  Am I missing something?

Title: Re: uKnow Peanut Test
Post by: CMdeux on March 01, 2012, 01:16:29 PM

Probably not, Jen.

This test seems MOST useful for determining who is at greatest risk of severe anaphylaxis.  Those of us who have already seen those kinds of reactions... well, we already KNOW the answer and so it doesn't matter very much knowing which particular protein is the allergen.

For those who are diagnosed via a skin/blood test after a very mild or localized reaction, though...  this information could really be helpful.  There are some proteins which are much less likely to provoke life-threatening reactions than others in allergic patients.  In other words, it probably makes little sense to have a preschool go peanut-free if the risk is relatively low to begin with, and that is a family that (though they'll carry epinephrine) will be able to enjoy a much less restrictive lifestyle than a patient allergic to one of the markers for severe anaphylaxis (I'm recalling there is a breakdown between Ara h2 and Ara h4 sensitization, but please don't rely on my memory!). 

The down side is that this is inherently a game of statistics, so the conclusions will become clearer (and better-validated) as more patients participate in this kind of testing.  At the moment, I'm not sure that it *is* clear how valid the conclusions are, since few patients like your DS or my DD have bothered with testing like this (for obvious reasons-- there's not really a medical need to do it since we already know that they're in that highest risk group).  There are exceptions to those broad categories, too, and there are certainly proteins (and therefore potential allergens) in peanut other than those included.

Does that help??

Title: Re: uKnow Peanut Test
Post by: Jenmag7 on March 01, 2012, 01:52:39 PM

Thanks, CM, that helps.  I guess someone who's never had a severe reaction could benefit from this information.  It would be interesting to know the results, but I don't really feel the need to fork over the money just to confirm what I already basicly know.

Title: Re: uKnow Peanut Test
Post by: Scout on March 01, 2012, 01:57:12 PM

my dd is a class six according to blood and prick,  but has never had more than a hive reaction and that to contact.....anyway

Dr. has said we are either the luckiest or most dilagent patients they have to nevver had gone ana, (not tempting fate).....I think a little of both

my girlfriends son is  a class 4 but has eaten pnut on several occasion (recent diagnosis) and only gets a scratchy mouth....etc....they are getting the test, since it may seem like he is not a candidate for ana.....who knows...

I may get it out of curiosity........

Title: Re: uKnow Peanut Test
Post by: Mfamom on March 01, 2012, 06:50:34 PM

so, is this test more accurate than rast or spt?
I'm in a weird place now with my ds.  He has negative rast to pn at this time (has 3 neg), but a 17mm wheal on spt. 
He had mild symptoms to plain m&ms etc when younger, then full blown anaphylaxis age 4.  Since then, nothing. 
No doctor (including Sicherer) will challenge him. 

Title: Re: uKnow Peanut Test
Post by: Jessica on March 12, 2012, 11:30:09 AM

I printed out the info for my dd's doctor (regular ped) and we're going to ask about it today. She has only ever reacted to walnut so maybe she would be a good candidate for this test. According to the website it seems like it's more accurate than rast AND spt.

If her regular ped won't do it, I'll have to call the allergist. I'm hoping to save some $$ and have it done here.

Title: Re: uKnow Peanut Test
Post by: Lisa on April 10, 2012, 09:37:27 PM

I had this done for my son a couple weeks ago and got the results last Friday.  My son had his first and only anaphylactic reaction when he was 2.  He is now 5.  I wanted it done because he has not had any more reactions...beyond possible contact.  So the results are what I would have expected.....he will react severely to any future contact or ingestion.  Other things I have learned....Ara 1 and 2 when paired together can indicate even more severe reactions.  Ara 3 may indicate the possibility of future allergy to soy and other legumes.  Ara 6, although a minor allergen, is associated with the most severe allergic reactions.  So what do I get out of it?  Really good paperwork substantiating the need for any school accomodations I may ask for; and also no more doubt that it was a fluke.

Title: Re: uKnow Peanut Test
Post by: CMdeux on April 11, 2012, 12:40:36 AM

Lisa, that is a lot of terrific information-- thank you SO much for sharing!

Title: Re: uKnow Peanut Test
Post by: MommyOfTwo+1 on April 11, 2012, 07:14:37 AM

Our new allergist offered us a test like this but we were told we would have to pay out of pocket because insurance was not covering it yet.  The cost I think was around $150.  At the time we declined because he had a challenge just over a year ago and based on the challenge he considered him ana to pn. 

Though you bring up an excellent point Lisa that I haven't even thought about as far as schools go.  I may reconsider the test if we run into issues with his school.

Title: Re: uKnow Peanut Test
Post by: rebekahc on April 11, 2012, 09:24:08 AM

Great info Lisa!  Thank you so much!!

Title: Re: uKnow Peanut Test
Post by: Mfamom on April 11, 2012, 09:33:28 AM

thank you for sharing that.  Is this test generally available at most allergist office at this point? 

Title: Re: uKnow Peanut Test
Post by: Mookie86 on April 11, 2012, 02:34:05 PM

Does anyone know if this test also can be used for drug allergies?  I'm allergic to both sulfa and penicillin, and it's severely limiting.  If I wouldn't become ana if I took those meds, it might be worth a few hives and itchiness to widen my antibiotic range, especially since I can take only about 5 antibiotics.  All antibiotics I can take cause GI symptoms and are really unpleasant.

Title: Re: uKnow Peanut Test
Post by: CMdeux on April 11, 2012, 03:47:44 PM

No, mookie, this is only for peanut allergens-- it's a break out of individual protein subtypes so that a picture emerges of which proteins are the ones that an immune response is targeted toward.  That in turn tells physicians (though, as noted, the certainty is still investigational at this point) how likely a person is to experience severe anaphylaxis to peanut. 

With an antibiotic, it's all ONE antigen, not a mixture, and people who are allergic tend to mount a wide variety of responses, (as you know).

Have you tried looking at AAAAI's "Ask the Expert" questions?  The reason that I ask is that our allergist is one of their experts on antibiotic allergy and rapid desensitization; he had something fairly recent indicating that penicillin-class allergy may not be as persistant as has always been thought. HTH. 

Title: Re: uKnow Peanut Test
Post by: Mookie86 on April 11, 2012, 03:58:50 PM

I developed a penicillin allergy within the past couple of years:  head-to-toe itchy hives that lasted five days even with 50 mg Benadryl every four hours. 

I'm wondering if I may have outgrown the sulfa allergy, though.  That one developed 20 years ago.  I got hives, and it resolved easily when I discontinued the antibiotic.  I don't think I even needed Benadryl.

For both, if it's only itchy hives and not potential ana, that may not be a reason to rule it out when looking at antibiotic options.  I'd rather itchy hives and needing a lot of Benadryl vs. intense GI symptoms that are normal side effects for certain antibiotics.

Thanks for that info., CM.  I'll check out that website.

Title: Re: uKnow Peanut Test
Post by: rebekahc on April 11, 2012, 04:15:21 PM

Mookie, our allergist also recommended rapid desensitization for DS's drug allergies.  She said we could choose to do it the next time he needed one of the meds rather than give an antibiotic unnecessarily.  Hopefully that's an option for you as well.

Title: Re: uKnow Peanut Test
Post by: Lisa on April 11, 2012, 07:59:40 PM

I was dumbfounded that not only did my allergist know what Iwas talkin g about was able to do the draw right there! Although the draw was somewhat archaeic......blood stick is what I was told and then they proceeded to get a vial of bloof out of his thumb!   He was good with it but then again he is a tough kkid!

Title: Re: uKnow Peanut Test
Post by: Jessica on April 12, 2012, 12:02:05 AM

The local lab apparently can't do this for whatever reason. I'm going to have to call dd's allergist and see if they offer it or if not, find one that does.

Title: Re: uKnow Peanut Test
Post by: 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.

Title: Re: uKnow Peanut Test
Post by: AllergyMum on April 13, 2012, 10:23:26 AM

We just finished taking my son for his pre-appointment bloodwork.  The allergist included one the the elements that uknow test also test for.  The lab tested Peanut rAra h2 in addition to the regular peanut RAST test.

Title: Re: uKnow Peanut Test
Post by: Jessica on April 13, 2012, 12:16:24 PM

I emailed from the contact page at the uknow peanut test site to find out if they could tell me if anyone in my area offers the test. Nothing. That was about a month ago. So now, if our regular allergist (who always just tells us to avoid for everything we ask about as if that's always easy) doesn't offer it I'll have to call all over the place to find someone. I wish they would just let me know. :(

Title: Re: uKnow Peanut Test
Post by: AllergyMum on April 13, 2012, 02:20:25 PM

Jessica,
Could you not just have your family doctor or allergist order the same pannel for peanut that the uknow runs.  You can have the rAra h1, rAra h2, rAra h3, rAra h8, rAra h9 at a standard blood lab (or at least you can here)  Our doctor is having the rAra h2 run on the same requisiton form as the other RAST testing.

Title: Re: uKnow Peanut Test
Post by: Jessica on April 13, 2012, 03:46:09 PM

I don't know the technical specs of it. Only that the doctor said their lab can't do it. I haven't called the allergist yet. DD just had surgery so I will try when she's getting around better.

Title: Re: uKnow Peanut Test
Post by: Jessica on April 14, 2012, 04:41:52 PM

I emailed again and they got back to me already. They said they'll find out if any labs in our area offer it.

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on April 17, 2012, 05:29:22 AM

Does anyone have the actual CPT codes for this testing?

Wondering if insurance(s) are allowing this testing, or requiring pre-auth? 

Wondering if being denied by insurance as "experimental" or "not proven" or "because we feel like it" . . . ?

Wondering how Tricare (Standard) is handling?

Are allergists balking at referring for this test?

Are allergists on board with the usefulness (for some?  all?) or not of this test?


Are there official positions (published) about this test & we could get those links into this thread?

Regions/providers for this test?

~ ~ ~

Just off the top of my head, that's some of what I've been thinking about as to this test.

Title: Re: uKnow Peanut Test
Post by: YouKnowWho on April 17, 2012, 06:40:37 AM

I keep thinking about this test for DS2 who tests positive for peanuts (relatively low scores but consistent) who reacts with contact hives when touching peanuts in the shell.  Even my very aggressive allergist is hesitant to challenge as a result.  It's one of those tests that could bring certainity to uncertainity, kwim?

Title: Re: uKnow Peanut Test
Post by: MamaMia on April 17, 2012, 07:32:34 AM

I know only minimal information on the UKnow test.  I think it can cost up to $300, out of pocket, no insurance covers it.  I learned at the FAAN conference this year, for peanuts, scientists have identified 3 epitopes: Ara h1, Ara h2, Ara h3.  Ara h2 is the one that people are more likely to have long lasting peanut allergy.  I THINK according to the UKnow test, they will look at all the epitopes (not sure if I'm using this term correctly) and determine if your child is on the lower or higher spectrum of being allergic.   ??? 

OK according to the Uknow chart, they will tell you if your child is at risk for a severe reaction by isolating the antibodies (epitopes??) in your child and see if your child carries the one that is known to cause severe reactions.

http://uknowpeanut.isitallergy.com/look-at-results/

I've also read that allergists still don't trust it.  Eh  :-/

I'm concerned about it in the sense that how do we know if our child will go from not having the marker for severe reaction to actually getting it.  There is no way of preventing it so what good is a test to know whether your child has the marker or not if there's a possibility of having the severe one?   ???

Title: Re: uKnow Peanut Test
Post by: Bobbi on April 17, 2012, 07:56:09 AM

According to our DD's allergist, the information will be extremely useful down the road to determine which treatment to use to overcome the allergy. Some treatments are/will be directed at one type of protein while other treatments work on others. That aside from knowing the likelihood of ana, from what I understand.

DD had her appointment about a month ago and he decided that it's not worth spending the $300 at this point. We already knows that she anaphylaxes and there aren't any treatments available at this point (aside from desensitization which isn't an option for us). So, we wait until the treatments start developing and do the test then to determine the right one for her.

Title: Re: uKnow Peanut Test
Post by: penelope on April 17, 2012, 08:23:41 AM

I think here's some things that will help:
1)Any allergist can offer this test.  There's paper work on the PIRL website that the doctors office fills our and sends in to set up an account with PIRL.  I filled out all the paperwork for my doctor and he signed it.  His office faxed the papers to PIRL.  The kit was sent to his office.  Any quest lab will do the blood draw for you.  PIRL customer service will help you find a lab if you don't have a quest lab near by.
If you have a lab slip from your doctor for other blood work there's no charge for the blood draw.  Otherwise, the lab may or may not charge you for the blood draw.
2) You pay for the test yourself.  You put your credit card info on the form.  After the test, PIRL will email you a receipt and you can submit a claim to your insurance company. 
3) There's the ISAC panel test which for the same price tests for 112 foods including the component test for peanut.  If you are living with multiple food allergies do the ISAC panel.
4) Lots more information on the text on the FB page peanut anaphylaxis cure.
5) I will look up the CPT code. 
Hope this is helpful!

Title: Re: uKnow Peanut Test
Post by: penelope on April 17, 2012, 08:31:16 AM

More answers:
We tried first to just bring a lab slip to the lab and get this test.  Quest has some connection with PIRL/thermo fisher scientific.  The lab would not do the test.  You need the actual kit with instructions to do the test.  The doctor can do the blood draw if you don't have a lab nearby.  You need to do this test early in the week because the test is sent over night.  We did the test on a Tuesday.  Our doctor had the results on Friday.

We got full reimbursement from our insurance company only because all of our deductibles were met.  Insurance companies don't see it as experimental.

For more info here's a great blog from Onespot Allergy.  She even shares a copy test results. http://blog.onespotallergy.com/2011/07/better-peanut-allergy-tests-available/

Title: Re: uKnow Peanut Test
Post by: Mfamom on April 17, 2012, 11:42:04 AM

i want to ask my dr about this.  I think it could help us a lot with understanding where my ds is with pa. 

Title: Re: uKnow Peanut Test
Post by: penelope on April 17, 2012, 12:37:31 PM

CPT code is 86003 (allergy testing)

Title: Re: uKnow Peanut Test
Post by: Lisa on April 17, 2012, 07:12:33 PM

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.

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on April 17, 2012, 07:42:50 PM

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!

Title: Re: uKnow Peanut Test
Post by: penelope on April 18, 2012, 12:06:21 PM

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. 

Title: Re: uKnow Peanut Test
Post by: Mfamom on April 19, 2012, 10:47:34 AM

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.

Title: Re: uKnow Peanut Test
Post by: Mfamom on April 19, 2012, 10:52:51 AM

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

Title: Re: uKnow Peanut Test and component testing
Post by: liseetsa on April 19, 2012, 02:30:25 PM

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. 

Title: Re: uKnow Peanut Test
Post by: penelope on April 19, 2012, 04:54:37 PM

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.

Title: Re: uKnow Peanut Test and component testing
Post by: admin rebekahc on April 19, 2012, 05:55:58 PM

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.

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on April 19, 2012, 09:21:21 PM

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

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on May 11, 2012, 07:10:18 AM

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.

Title: Re: uKnow Peanut Test
Post by: twinturbo on May 15, 2012, 11:00:25 AM

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.

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on May 31, 2012, 11:18:23 AM

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.

Title: Re: uKnow Peanut Test
Post by: twinturbo on May 31, 2012, 11:23:35 AM

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.

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on May 31, 2012, 07:44:19 PM

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 -- )

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on May 31, 2012, 07:45:08 PM

Link to related thread as to component testing (started by boo):


Component testing - would you abandon your Epi-Pen?

Title: Re: uKnow Peanut Test
Post by: twinturbo on June 01, 2012, 06:26:57 AM

Quote from: ajasfolks2 on May 31, 2012, 07:44:19 PM

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 -- )

lol.

How it went for us: We asked directly, "Can we use ___________ lab?" Phadia called that lab to work out what I believe were its protocols to ensure integrity. They called us back with approval along with a short explanation on directions and how costs would be handled. From here it's like any other blood draw at our office of choice with the singular difference that we have to make an appointment.

Ped offices aren't good at draws. The best ones tend to be labs located inside hospitals. The staff there flexes between lab locations with some more experienced than others.

Title: Re: uKnow Peanut Test
Post by: YouKnowWho on June 01, 2012, 12:10:16 PM

We have had better luck at any lab as opposed to drs offices - high traffic = more practice.  However when you are in/out patient at a hospital, those are the worst.

Title: Re: uKnow Peanut Test
Post by: booandbrimom on June 01, 2012, 12:40:08 PM

OK, I spent the three days and read the hundred research papers necessary to write this up:

The science behind component testing:

http://foodallergybitch.blogspot.com/2012/06/component-testing-pt-1-science.html

Why we should (or shouldn't) spend the money:

http://foodallergybitch.blogspot.com/2012/06/component-testing-pt2-why-should-we.html

CM, if you have corrections, let me know!

For those who are not biochemical protein scientists...let me know if it's helpful or still too dense. (And, of course, if you agree.)

Title: Re: uKnow Peanut Test
Post by: Jessica on June 01, 2012, 01:11:57 PM

I may call and see if I can get it at the local lab after all. My dd was diagnosed via skin test and has never reacted to peanut (but has never had it directly-when she was little and we didn't know all the ins and outs of pa, she did have foods that are now considered high risk for cross contamination). So I'm guessing she is a good candidate?

Title: Re: uKnow Peanut Test
Post by: Leticia on June 01, 2012, 04:26:43 PM

Lisa, where did you get this info? My son just got his results today ...positive on the ara h 3 so i have been looking for info about it ..thanks so much.

Title: Re: uKnow Peanut Test
Post by: booandbrimom on June 01, 2012, 06:01:02 PM

Leticia, are you talking about the Ara h 3 and legume cross-reactivity info? That's actually kind of muddled, as there are epitopes on both Ara h 1 and Ara h 3 that can cross-react.

Here's the Bible:

http://www.phadia.com/Allergens/ImmunoCAP-Allergens/Food-of-Plant-Origin/Allergen-Components/rAra-h-1/

A little light reading for a Friday night.

Title: Re: uKnow Peanut Test
Post by: Lisa on June 04, 2012, 09:10:26 PM

Hi Leticia,

If I remember correctly, I think it was actually indicated on the paperwork.  It is at my work, so I will check it tomorrow.

Title: Re: uKnow Peanut Test
Post by: Jessica on June 19, 2012, 12:44:07 AM

Wish me luck. I called Phadia and they are supposed to get their local rep in touch with our ped and explain the test and why their office/lab should be able to do it.

Title: Re: uKnow Peanut Test
Post by: GoingNuts on June 19, 2012, 06:21:50 AM

 :thumbsup:

Title: Re: uKnow Peanut Test
Post by: Jessica on June 19, 2012, 12:55:47 PM

That's a first. The company actually called me back today (when does that ever happen??) and said the rep will be stopping in at the dr's office. Unfortunately dd answered the phone and she would make the worst secretary ever so I'm not sure when but hopefully in the next few days. DS has an appointment on friday so maybe they'll have some information for me by then.

Title: Re: uKnow Peanut Test
Post by: Ree on June 29, 2012, 08:38:04 AM

Quote from: booandbrimom on June 01, 2012, 12:40:08 PM

For those who are not biochemical protein scientists...let me know if it's helpful or still too dense. (And, of course, if you agree.)

I'm not a biochemical protein scientist...It was extremely helpful, not too dense - thank you!!!   :thumbsup:

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on July 04, 2012, 02:22:45 PM

Related thread with poll, if interested:

Component testing poll

Title: Re: uKnow Peanut Test
Post by: ajasfolks2 on July 06, 2012, 11:31:06 AM

Anyone having success getting this test paid for by insurance?  Have an allergist who will write letter stating medical necessity for this test?

Thanks if you can share this info . . .

To my knowledge Tricare is denying outright, but I do not know the "code" reason for denial. Sometimes that is helpful in dealing with insurance and trying to get them to reconsider and pay after all.

But getting any reconsideration will require that the ordering MD attest to the medical necessity.

Also, some insurances may be denying/refusing with claim that this test is "experimental" and "not accepted practice".


~ ~ ~

Wondering if anyone has child in EFMP and is then afforded the test by Tricare?  Is this (EFMP) the golden ticket?

 :watch:

Title: Re: uKnow Peanut Test
Post by: Jessica on July 06, 2012, 01:22:54 PM

Heck, I'd be willing to pay if I could only get the dang test. I called this week and left a message and they didn't call me back. I really wanted to get this ball rolling before we go on vacation but it's not looking good. :(

Title: Re: uKnow Peanut Test
Post by: Jessica on July 10, 2012, 12:26:54 PM

Finally got an appointment with a different allergist. It's 5 days before we leave for vacation so we obviously won't get any information before but at least it's a start.

Title: Re: uKnow Peanut Test
Post by: Lisa on July 11, 2012, 03:22:59 PM

My insurance paid no questions asked for: IMMUNOCAP ISAC by PiRL.  Blood draw was done by archaic finger prick for one full VIAL! at the allergist's office.  I am in Northern Virginia.

Title: Re: uKnow Peanut Test
Post by: TwoDDs on July 11, 2012, 06:58:11 PM

Quote from: Lisa on July 11, 2012, 03:22:59 PM

My insurance paid no questions asked for: IMMUNOCAP ISAC by PiRL.  Blood draw was done by archaic finger prick for one full VIAL! at the allergist's office.  I am in Northern Virginia.

Finger prick for a vial - OMG  :misspeak:

Title: Re: uKnow Peanut Test
Post by: Lisa on July 11, 2012, 07:32:20 PM

Yeah, that part was a little ugly, but my boys are all pragmatic and the price of an ice cream cone by far outweighs 15 minutes of torture!  They make cheap dates.  Can't wait to tell my 4 year old who just yesterday was scratch tested and had blood drawn for probably PA that he has to have shots at his four year checkup tomorrow!

Title: Re: uKnow Peanut Test
Post by: Jessica on July 23, 2012, 07:11:36 PM

We went and had our test done today. What a mass of confusion. When I called  I specifically said that the lab and dr here would not do it. So we get there and they have the kits but they don't do blood draws in this office. They arranged it with the nearby hospital lab to do the draw but I was responsible for sending the sample out. Luckily I was able to contact both Fed Ex and Phadia and find a drop box and make sure it was ok for the sample to be left in it on a warm day. However, the doctor seems great and he called in an open refill for epis to walmart-something dd's ped refuses to do. So any time or place we need them we can just call ahead and have the rx transferred and get a refill.