retesting for PA by allergist

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Regular visit with allergist this past Saturday. He is well known for PA issues and speaks in the area all the time. Name of Viksman. Anyway there he was checking out dd and discussing her allergys shots and all seemed fine when he suddenly mumbles almost to himself ( with heavy Russian accent), "ya know, some kids grow out of this peanut allergy" When was the last time she was tested. So here we are scheduled for testing next month. Poor dd is all excited. I am pretty realistic. I have no idea what triggered this, but now I have to go along with it. Thanks for listening, Arlene

On Dec 12, 2004

Our allergist said the same thing. Dd is getting tested in Feb (to coincide with when she needs a cap rast for milk). Our allergist said with strict avoidance the latest studies show that the chance of outgrowing the pa is 50%. The 20% is for all people, many of whom don`t strictly avoid. People on this board are probably more allergy aware than the average pa person. Many of the people who post here, including me, know pa people or parents of pa children who are nowhere near as cautious as most of us on this board are. So the 20% who outgrow it, includes those who strictly avoid and those who don`t, those who read every ingredient label and those who don`t, those who let their kids have airborne exposures and those who don`t, etc. But for those who practice strict avoidance, with a 50% chance of outgrowing it, why not retest?

On Dec 12, 2004

My dd also sees Dr. Viksman in his Toms River office - he also mentioned a chance of outgrowing her peanut allergy, although I am not that hopeful. DD has not been tested in almost 2 1/2 years, but I'll let you know what he says when we see him next.

On Dec 13, 2004

Hey, small world! We also see Dr Viksman in the Manalapan office! We love him!

I hope for good news for you. I was wondering when the last time your dd had a peanut reaction? Wondering if that is playing a part in retesting.....Did he say he was going to do a skin test?

On Dec 13, 2004

Arlene- Why do you have to go along with it? Please be careful. A peanut challenge ALMOST KILLED our daughter.

On Dec 13, 2004

Arlene said TESTED, not challenged.

have you posted about your daughters reaction any where on this board, just curious!

sarah

On Dec 13, 2004

[quote]Originally posted by Carefulmom: [B]Our allergist said the same thing. Dd is getting tested in Feb (to coincide with when she needs a cap rast for milk). Our allergist said with strict avoidance the latest studies show that the chance of outgrowing the pa is 50%. The 20% is for all people, many of whom don`t strictly avoid.

I have to disagree with you here. My daughter's levels dropped from 92 (a class6) to 42 (class 4) in just a year. I called Dr. Wood to discuss the results and why she dropped so significantly. Basically, he told me it had NOTHING to do with strict avoidance. He wished it did but the research shows that it doesn't. He told us the odds of her outgrowing it are slim to none and while he is pleased with her decrease in numbers, they really don't say much except maybe her immune system is doing what it should.

At the FAAN conference in Baltimore, they again stated that the 20% outgrowing PA are those who are a class 1 to start with and that strict avoidance has nothing to do with it.

We avoid EVERYTHING that is contaminated by peanuts and tree nuts.

On Dec 13, 2004

Was the FAAN conference in Baltimore within the last month? The study our allergist quoted came out last month or the month before. This was different from what he said as recently as last July (2004). The October or November study about the 50% for those who strictly avoid is hot off the press.

On Dec 14, 2004

The thing about 'strictly avoiding' sure is depressing to me. We've had a few reactions this year, but they were contact reactions. and there was nothing we could have done to avoid them, for the most part. One time my son was sitting in a shopping cart and started welting up, another was after drinking bottled water(I guess there was some residue on the outside of the bottle?) the last time was when his grandfather came over and was playing with him, and my son got a bad contact reaction. And to top it off, his grandpa said he didn't eat any nuts that day. (sigh) I guess his chances for outgrowing it aren't very good....

On Dec 14, 2004

Quote:

Originally posted by Carefulmom: [b]Was the FAAN conference in Baltimore within the last month? The study our allergist quoted came out last month or the month before. This was different from what he said as recently as last July (2004). The October or November study about the 50% for those who strictly avoid is hot off the press.[/b]

Well, I spoke to Dr. Wood in September and he assured me that strict avoidance had nothing to do with her decrease in the numbers and he basically told me in no uncertain terms that her odds of outgrowing it were slim to none.

I found this article: [url="http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2004/11/10/hpeanut10.xml"]http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2004/11/10/hpeanut10.xml[/url]

It was written as of 10/04 and it still clearly states that only 20% of kids are outgrowing the allergy. Everything I have read states this same statistic. I would think DR. Wood would have known in September if the statistics were going to change as those studies take YEARS to complete. If it was to be released in November, he would have known about it in September.

On Dec 14, 2004

For Sarah-

I think of a challenge as a type of test. Arlene didn't specify.

DD's reaction was a nightmare. At age four she had a negative CAP-RAST to peanut (after previous positive skin and CAP-RAST tests, and no history of exposure). The allergist was sure she had outgrown her peanut allergy. It turns out that this was probably a lab error and her CAP-RAST probably wasn't really negative, but we didn't know it at the time.

The allergist gave her a tiny amount of peanut butter in his office. We waited 15 minutes; nothing happened. Then he gave her a whole teaspoon of peanut butter. If I had been more educated about peanut allergy, I never would have allowed him to do that. She had full-blown anaphylaxis with hives, face and throat swelling, severe wheezing and shortness of breath, very runny nose, abdominal pain, and she passed out briefly. We almost lost her. It took five shots of epinephrine to save her life. Several hours later she had a recurrence of the same symptoms, but not as severe (a biphasic reaction).

We developed a great respect for her condition and lost all respect for her allergist that day. I wish someone had warned us of what to expect from a peanut challenge before he almost killed our daughter.

On Dec 15, 2004

It sounds to me that you are quite right in avoiding peanut challenges with your child. your allergist sounds like a complete quack. The whole challenge set up from the start was a dangerous activity. But there are times when challenges are worth considering. They are not bad news for everyone if they are carried out with the proper testing before hand, and in a safe suitable environment. Thats not to say that anaphylaxis isnt possible during these tests, but having all the facts before hand, and the safety net behind you gives you a clearer picture of what to expect and weigh the pros and cons.

I dont think that because of your families appaling experience ( I would sue the bas***, and thats saying something , as I am from the UK and we just dont do that sort of thing very often, sue people I mean) that you can wipe out as totally useless the food challenge test for others.

my son has had two food challenges, for egg, and is still here, and I can not fault my sons treatment in any way. William passed cooked egg, but failed the raw. If my sons ratings to beans dropped I would consider him for challenging. But for him beans and peanut/kiwi are going to be his life long allergies. I will have him challenged for raw egg in the future, as it is the one he is most likely to out grow, and will make his life and food selection easier to cope with.

sarah

sarah

On Dec 15, 2004

Sarah-

I totally agree that food challenges can be completely appropriate and safe if done correctly and for the right reasons. Since her peanut challenge, DD has had milk (failed) and egg (almost passed) challenges with a different allergist. We plan to try another egg challenge next summer.

As for suing the quack, we've considered it. The statute of limitations on medical malpractice doesn't run ouy until DD is 18, so we could still sue. I think the experience scared the doctor, and I believe he learned a lesson that day. The most important thing is that he not continue performing unsafe food challenges on other kids.

Have a great, safe holiday!

On Dec 15, 2004

Samirosenjaken, the 20% is correct. Only 20% of all kids with pa outgrow it. That has not changed. The only thing that is new is that if you subgroup the kids into those that have no exposures, and those that do have exposures, the group with exposures much less than 20% outgrow and the group with no exposures 50% outgrow. So the 20% has not changed; it is just that in a select group that has no exposures the rate who outgrow it is 50%. This came out after September, so that would explain why you were not told this in September.

On Dec 15, 2004

Hi folks, Me again.wow didn't think this thread would get so many replies! DD will be getting the test where they prick your skin and put a drop of solution on it to see if it reacts. IF and only if this turns out negative THEN Dr. would have a challenge set up in the office and he said this would be over many hours. Jan 22 is our date for skin prick test. Arlene

On Dec 15, 2004

Quote:

Originally posted by BS312: [b]For Sarah-

I think of a challenge as a type of test. Arlene didn't specify.

DD's reaction was a nightmare. At age four she had a negative CAP-RAST to peanut (after previous positive skin and CAP-RAST tests, and no history of exposure). The allergist was sure she had outgrown her peanut allergy. It turns out that this was probably a lab error and her CAP-RAST probably wasn't really negative, but we didn't know it at the time.

The allergist gave her a tiny amount of peanut butter in his office. We waited 15 minutes; nothing happened. Then he gave her a whole teaspoon of peanut butter. If I had been more educated about peanut allergy, I never would have allowed him to do that. She had full-blown anaphylaxis with hives, face and throat swelling, severe wheezing and shortness of breath, very runny nose, abdominal pain, and she passed out briefly. We almost lost her. It took five shots of epinephrine to save her life. Several hours later she had a recurrence of the same symptoms, but not as severe (a biphasic reaction).

We developed a great respect for her condition and lost all respect for her allergist that day. I wish someone had warned us of what to expect from a peanut challenge before he almost killed our daughter.[/b]

was an ambulance called to transport to a hospital?

On Dec 15, 2004

Hi Arlene, we did the skin test with Dr Viksman as well. He said he diluted it to 1- 100th strength. My son had a pretty bad reaction in office , and they gave him benadryl there. huh..... has your child had NO reactions in a long time? And if you don't mind my asking- what is the cap-rast score you have? Sorry for being nosy. I am just curious under what circumstance Dr V. performs repeat testing. Thanks!

On Dec 15, 2004

"has your child had NO reactions in a long time? And if you don't mind my asking- what is the cap-rast score you have? Sorry for being nosy."

Nicoli- Let's see... dd is 10, no reactions since 1st grade, that's 4 years. Yet, other foods have been added to her allergy list in those years. Don't know what her Cap-rast score was, but when he did the 1/100 dilution test her bump was off the charts. That's when he said 'oh, yeah, she's allergic and you are not leaving here without 2 prescriptions for epi pens".

Ask away, we share, we learn here. Arlene

On Dec 16, 2004

MommaBear- The ambulance was not called. DD improved after each shot of epinephrine, then got worse again. I guess the allergist thought he could handle it. DD did survive, luckily.

On Dec 16, 2004

The lab error part is really scary. Maybe if our kids have a cap rast low enough for a food challenge, we should ask that the cap rast be repeated a few weeks later before a food challenge is done? (to have 2 low cap rast values at different points in time).

On Dec 22, 2004

Hi, I am so sorry to hear about your child's reaction to the food challenge-you both must have been completely terrified. On another thread I mentioned that my almost 1 yr old's cap rast came back at a 1 while skin testing done 1 1/2 mos ago was 4+. Carefulmom posted about how unreliable some of the blood results can be & this is also what my allergist said. He said not to be too thrilled with the 1 as he thinks it is more severe given the 4+ skin result. So it does seem interesting that based on one blood test your dr would opt for the challenge. Given what others have posted about the possiblity that strict avoidance can help the chances of outgrowing PA, would a food challenge with an allergic result therefore be an exposure and make it even more difficult to get to that glorious percentage that will outgrow PA? If you head to a lawyer, run that concept by them-I know I would. And again, I am sorry to hear of challenge results and hope your child is not carrying fear around from it.

On Dec 22, 2004

I know the answer to that one. When we saw the allergist last month, he asked if I wanted to put dd in the Xolair for pa study. I asked if the two peanut challenges (one at the beginning of the study, and one after treatment with either Xolair or placebo) would decrease her chance of outgrowing the pa. He said yes. So I am sure the failed food challenge decreased your child`s chance of outgrowing the pa also.

On Dec 23, 2004

I'd consider a CAP RAST, but probably wouldn't get a skin prick test--they're not reliable. Some people on here have mentioned a CAP RAST of "1", but I'm not sure if they mean Class 1 or 1 kIUa/L (not sure what that unit is, but that's what's on my son's results.) Anyway, a 1 is really a Class 2. So, it's a bit confusing. Anyway, I'm pretty sure Dr. Wood won't do a food challenge unless the CAP RAST is under .35. I don't think he does them based on skin prick tests.

On Dec 24, 2004

Thanks- I hadn't considered that a lessening of the chance of outgrowing the allergy is a type of damage...good point. Given the severity of her reaction and the fact that she has asthma, I never believed that DD would be in the lucky 20% who outgrow peanut allergy, so this doesn't really bother me.

In our case, it would have been a great idea to repeat the blood test before performing the challenge. I'm sure it would have been positive since the first result was wrong, and we never would have done the challenge.

I hope that what DD gained from her peanut challenge experience was a reasonable fear of eating anything potentially unsafe. Such a fear is definitely healthy. When she is fifteen and all of her friends are eating something that she shouldn't, maybe some deep memory of the time she almost died will prevent her from taking dangerous chances.

On Dec 24, 2004

I have posted this info before but just thought I would share it on this discussion. My 14 year old DD had a negative skin test followed by a negative rast test (less than .35) and is scheduled for a challenge test for Feb.2005. She will eat very small amounts of peanuts, increasing the amount over four hours in the allergist office.

On Dec 25, 2004

The combination of negative skin and RAST tests sounds really promising. Best of luck and please let us know how it goes.

On Dec 29, 2004

We recently re tested my son for egg & shellfish (egg to see if he could have flu shot.) Both were negative. Then, we did RAST to confirm and the dr added peanuts to the RAST test as he has been reaction free for almost 3 years after a severe ana. reaction. Anyway, the rast came back negative for shellifsh and egg and very low 1.75 for peanuts. he was hopeful that he had outgrown the pa. We did a scratch test for peanut to compare with RAST and the wheal was 17mm which is pretty big. Anyone else had this type of results that are conflicting?

On Dec 29, 2004

My dd, reaction free, is at 1.14 at last testing(CAPRAST). We were told this is still moderately allergic. ? Is it not? She has never skin tested to peanuts, only some tree nuts, which where postive, though I thought they were barely there. Like tiny mosquito bites. I hope that is good. It has been since she was almost 3, and I think we will retest all this summer before K, but I fear SPT as an exposure. becca

On Dec 29, 2004

Saknjsmom, we have what seem to be conflicting results too & I have posted about them on other threads. A skin test done about 2months ago indicated peanut at 4+, 20I, 46E. Dont know what the I and E mean. A rast test done a few wks ago placed peanut at a class 1 and .39 KU/L, 106% response. But, the allergist says the blood test is more prone to error and he is inclined to think the peanut allergy is very severe based on the previous skin testing. He said sometime we can redo the blood test & if we get another low response that would support the previous blood test. But he thinks that is not really likely and rather the low result was in error. Other people have posted how unreliable these blood tests can be. It is sad because we were ready to break into a big celebration when we heard the results. I've also heard that skin testing can still be positive even if the allergy is decreasing--something about a memory that the immune system has. It does make it hard to know how allergic our kids really are!

On Dec 29, 2004

Quote:

Originally posted by samirosenjacken: [b] Well, I spoke to Dr. Wood in September and he assured me that strict avoidance had nothing to do with her decrease in the numbers and he basically told me in no uncertain terms that her odds of outgrowing it were slim to none. [/b]

I have no idea where this thread went, but I read thru the whole darn thing, and this is the only quote I remember that I wanted to comment on.

I thoroughly agree with this statement. Allergen avoidance does NOT help outgrow an allergy. It keeps you ALIVE.

Thats all I wanted to say.

Jason

------------------ [b]* ENRICHED * [/b]

On Dec 29, 2004

<<>>

We had this happen to my son. Becky (8) and Timmy (9) each had a RAST test done. Becky came back as negative to everything and Timmy came back a Class 3 to shellfish and negative to everything else. (He is anaphalactic to Peanuts, Shellfish, Dust, Cats and Bunnys). They redid the skin tests and he was a 4+ to peanuts. Becky, on the other hand, was a 0 to peanuts. So, as I said this same thing happened with us with one child outgrowing the pa and the other the same as its been for most of his life. (He has had 5 or 6 anaphalactic reactions- although none in the past year or so- so I really didn't believe the negative blood test anyway FWIW).

HTH, Valerie

On Dec 30, 2004

Valerie, I am happy for you that Becky was able to outgrow her PA! I am curious to know, if I may, what was her inital skin test result for peanut, and how old was she at that time? Did your allergist base redoing the skin test on the one negative blood test? Today we saw the allergist & he does not feel we need to redo the peanut blood test for a while, even though he doubts the reliability of the score. So I am sure we will not be looking at redoing the skin test for a very long time, if ever. I just wonder if it ever happens that kids who start out with a skin result of 4+ ever do outgrow? I hope, I hope, I hope. Yes,I know that we all hope and dream for the ultimate freedom from allergies for our kids. That's what makes this such a good place to find support and share.

------------------

On Dec 31, 2004

Quote:

Dust

Crikey! how do cope with being ana to THAT????!!!

On Jan 1, 2005

My 3 yr old sons PA RAST test came back negative this past Sept and the dr was ready to schedule a food challenge, but then she noticed that the lab tested for IGG instead of IGE! Pretty bad, huh?! He was then retested (poor guy) and he's still positive...scary thought of what could've happened! I wonder how many of these failed food challenges are a result of lab error.

Ree

Sean 3 yr - PA, EA Brian 1 yr - MA

On Jan 2, 2005

...I am one of those "lab" techs that run tests on patients...and in a kind way, I would like you to realize that it is possible for physicians to order the wrong tests on patients...(like the IgG versus the IgE). It is possible that the wrong test was checked or the handwriting was not clear..or looked like a G instead of E. I experience this everyday. We, as lab techs, do not have patient history in front of us as we run lab tests or send them to reference labs. Please realize that "lab error" may not really be from the lab itself, but from where the order initiated, or how it was interpreted by the person who entered it into a hospital computer system. Sometimes we do not see the initial wirtten orders, but just a computer-generated label on a tube of blood. So please don't blame us. I take my job very seriously...and just remember: a result is only as good as the quality of the specimen we receive,(which includes labels and orders, and how a specimen was collected, and how long it sat at the dr office before coming to us, and if the collector labeled it correctly). When we receive a specimen, it is essential to see if the name on the specimen matches the name on the orders. There are lots of other checks and balances done in the lab to insure quality. QC (quality control) testing is done with each batch of tests run....and we are inspected yearly and required by law to run this QC. Just because a RAST test came back negative for peanut and the patient had a reaction, doesn't mean the lab is at fault.Why is that attributed to LAB ERROR. Maybe the RAST really is negative. The RAST is not surefire test to determine if an allergy is outgrown. It's been used as guide to determine the positive predictive value- the likelihood of having a reaction. Peanut allergy has a lot of unanswered questions.... I felt like I had to stand up for my profession. And like the rest of you I hope for a more reliable test to determine if peanut allergy can be outgrown. Stay safe allison

On Jan 2, 2005

Wow, can't believe where this thread has gone! Even more eager for our testing on the 22nd. Arlene

On Jan 2, 2005

Allison - I'm so glad you brought that to my attention. It was presented to me by my allergist as a lab error. I spoke with the lab administrator and they admitted to the error and retested my son in my home because of it. But, I understand the reason for your post and I thank you for bringing it to everyones attention. So much goes on behind the scenes that we as parents are not aware of.

On Jan 2, 2005

Well, I guess I must be more curious than most. I always look at the lab slips before I take dd to the lab. If something doesn`t look right, I question it, or even if I want another test done. When dd was last Cap Rast tested, I decided it would be a good idea to test her for mango. I am allergic to mango, so I never gave it to her, but it would be nice to know. So I asked the allergist to add it on there. I always assumed that everyone looks at the lab slips before they go to the lab. And since it is just boxes to check, I`m not sure I can see where handwriting can be an issue on a Cap rast?

[This message has been edited by Carefulmom (edited January 02, 2005).]

On Jan 2, 2005

Maybe this is a bit off course, but why are people getting food challenges to peanut in the office instead of the hospital? Hasn't anyone's doctor recommended this setting?

On Jan 3, 2005

Ree- I'm glad you were so understanding about my post. I didn't post this out of spite at all... just merely as an FYI.

Carefulmom- Although your allergist uses a checklist to indicate which tests are performed, it doesn't mean that all allergists do. I often receive written orders for IgE testing on some of our patients. There are a lot of factors involved, and each physician has their own way of doing things. As the lab tech, I really wish there was ONE STANDARDIZED way of submitting orders for labwork. But there isn't. Just like the way allergists treat peanut allergy - there is NO ONE STANDARD.

I didn't post this to be ugly, but like I said above, just as an FYI.

allison

On Jan 3, 2005

I guess I have a different opinion than most. We have 2 daughters that are pa and I am in no hurry to challange or test to see if they have outgrown their pa.

I will err on the side of caution and assume that they are pa rather than risk more horrible reactions.

Even if a test came back ok, what's not to say that they wouldn't redevelop the allery?

I guess I'm just not willing to take any chances, regardless of what a test might say...

Just my .02 cents...

------------------ Liz, mom to:

B: asthma, bee sting allergy, mild EA's and eczema

M: asthma, peanut & nut, severe EA's and mod eczema

A: asthma, peanut, nut, fish, penicillin, severe EA's and eczema

On Jan 3, 2005

Austin 2001, I can see your point. Just because my allergist uses a form and checks things off does not mean they all do. And I agree some doctors` handwriting is illegible.

On Jan 4, 2005

I had my annual allergist appointment last month and he refused to retest me for peanut allergy. I haven't had a reaction in over three years (I am very, very careful) and was hoping that he may have something encouraging to say. Instead, he said that he will not retest me until it has been at least ten years since my initial diagnosis. Has anyone else been told anything similar?

On Feb 16, 2005

GLAD EVERYTHING WENT WELL! Please stay connected & visit

(just bumping)

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