oral challenge

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Our allergist has suggested an oral challenge for my daughter. I am livid. Her skin test was slightly less, but her blood test was slightly higher than two years ago. He told me it was "low," whatever that means. So, when the other doctor called to tell me the scores I got that the blood test was a 4, just as it was two years ago. I think I need a new allergist. This is the same guy that told me to get rid of my cats when both of my kids were tested -- my son tested a 2 and my daughter tested negative. I don't know how I feel about that, but this is ridiculous.

Am I wrong? He never wants to give me test scores. I know they are just a guideline and many people take them a little too literally. There is so much misinformation out there. I tell my friends that I don't want her exposed so she'll outgrow it and they doubt me saying she should be exposed to it. Well, I have been wondering if she's outgrown it, however, I have no basis for that. I can just see that she is not as sensitive as she used to be.

Then I thought maybe we could just have him put some on her cheek. As far as I've ever seen she's never reacted to touch. All this after I fought with my inlaws at Christmas. Can you imagine what their reaction to this would be?

[This message has been edited by doreen (edited February 01, 2003).]

On Feb 1, 2003

Why don't you get a new doctor? You obviously don't trust this one (understand why) and if you switch you can just ask that your child's files be transferred? I would think they would include the test results or if they have been recent the new doc could get them from the testing agency (my ped. is now using some outside service for all blood work due to some stupid insurance deal - but they still keep records.

You really need to have someone you can work with here - even if it means driving / paying for the right doc.

On Feb 1, 2003

Well, two things, I was really wondering if anyone would consider a food challenge under these conditions?

I am close enough to hunt down Hugh Sampson -- does he actually see new patients? I think you're right Chicago about paying and driving. I'll do what it takes, especially since we kindergarten is only a year and a half away.

On Feb 2, 2003

You stay strong and refuse all oral challenges. My husband is a doctor and believe me they are not gods. They are as flawed as the rest of us and an oral challenge in an allergists office is nonsense!

Are you using the allergist for environmental allergies as well? That would make it imossible to do a long drive.

DS, DD and I had allergy shots for seven years, sometimes three times a week since we are all big time environmentally allergic. Luckily the allergist was right here in our town because it would have been awful any other way.

Peg541

On Feb 2, 2003

I know I would never consider an oral challenge to peanuts. My family doctor had mentioend the idea to my parents when I was a kid but we all said "definitely not". Even though I had a VERY relaxed comfort zone (as you will note in my posting today in the "comfort zone" thread), and oral challenge is way too risky when you are talking about peanut allergies.

On Feb 2, 2003

Thank you, I felt strongly that way, but, as Peg said, to stay strong sometimes it is hard.

My kids have not tested positive for environmentals yet, but I know they are there. We've never actually had an asthma diagnosis for either, but am prepared someday for both kids.

On Feb 3, 2003

My son tested 4+ on a skin test and the blood test - Rast not cap rast - came up below .35 - the doctor originaly wanted to do an oral challege - right now we go for another skin test tomorrow - then he said next would be an intradermal skin test then a food challenge.

It has only been 3 months since he was diagnosed - what do you think???

On Feb 3, 2003

My son tested 4+ on the skin test, scratch test. The allergist said he would never do an intradermal on him because it would be too dangerous. Now when you combine that with an oral challenge, my feeling is run don't walk! Away that is......

I would not feel safe with an oral challenge outside of an ER or ICU setting. And I'd refuse even that. Better to treat your child like he is PA than to lose him proving he is PA.

Peg

On Feb 3, 2003

Wow caryn your situation sounds stranger than mine. How can they propose this three months after diagnosis? Get a new allergist, and well...

This is what I always thought I would do about food challenge ... if she had two tests below a class 1 and two negative skin tests then I would consider a food challenge in a hospital. I always thought my allergist was the type that would handle it the same way. I am really surprised to find differently. When he didn't tell me about my son's cat scores I thought it was just because he didn't think I would take it seriously. He told me later and it was higher than I thought it was, but I didn't know he wasn't going to tell me any of the other scores either. I never thought he'd suggest a food challenge so suddenly, and in his office.

Now, just wondering, how and why was your son diagnosed? I feel as Peg does (better to assume PA then risk the other choice), but I needed to verify my thinking here.

[This message has been edited by doreen (edited February 03, 2003).]

On Feb 4, 2003

Personally, however low, if there is any detectable allergy, skin or blood to peanuts, I would not challenge. As long as there is any indication of the slightest sensetivity, I would wait for 2 sucessive negative tests then consoder an oral challenge. Even then, I would be in no hurry to feed dd peanuts. Might just be nice to go for an ice cream to get a non-nut flavor and not worry(meaning just to stop worrying about the cross contact, like eating next to kids at school, too)! becca

On Feb 4, 2003

Well we went to the allergist this morning and redid the skin test - my son was another 4+ for peanuts and positive for 5 other tree nuts as well - ranging from 1+ to 3+ - the doctor said okay he is definitely allergic to peanuts and tree nuts - no more testing til he gets ready for school - he is only 2 1/2 now.

He was diagnosed PA after 11 ear infections from a constant runny nose - we chose allergy testing over tubes. After getting rid of all nut and peanut products(and yes there were plenty) in our house(he hadn't eaten any yet) he has been free of the runny nose and ear infections since the diagnoses. (3 months). That is until he spent quite a bit of time at grandmas this week and I noticed the ant traps - I called and they contain peanut butter!

This is our second allergist - the first sent us away with an epi pen jr but no info and would not do blood testing.

thanks for all your advice - I am so glad the food challenge was not considered this morning - my husband said to call him at work if the doctor suggested it!!

On Feb 5, 2003

I think that was what I was thinking becca.

Caryn, I'm glad your situation worked out.

I actually have an update -- my allergist called and checked with -- get this -- HUGH SAMPSON'S office. According to his office they would recommend a food challenge on my daughter, but in the hospital as an inpatient.

I am not going to do this, but I don't have to give any really serious thought to this until next yeat before she starts kindergarten. I guess it depends on my allergist (I might have to find a new one at that point), and what kind of recommendations he is willing to send to a school without another test.

Now, I might have to start another thread on this, but he told she was a 4 on the RAST test, but an 8 on another scale of 15, and that do recommend food challenges if the score under 10. Does anybody know about this scale he is talking about?

Thanks everyone. Worries over 'til next year, but of course, I will still consider her PA for a longtime after any other diagnosis should we ever get there. Whose to say it can't come back or react differently on a different day?

On Feb 5, 2003

PS -- Eric, I've been thinking about you. Do you feel that the exposures to peanuts you had when you were younger might have increased the severity of your reactions now? This is not a judgement, just a curiousity. Everything looks worse in print.

On Feb 10, 2003

Now I am confused? Will was diagnosed with PA at 13mo. He is now 26mo and has never had any problems. We keep everything away from him but he seems to have grown out of it. His blood levels have come back negative 2X. His last scratch test came back negative. We are doing a oral challange in the MD office in March. The only way he was diagnosed was with a scratch test. His lips swelled up when at 13mo he tried to eat a peanutbutter cracker. So...should I have the challange? I have to find a new babysitter by summer and wanted to know for sure, I did not want ot trust the blood teat. He will be goingt o a summer program with his older brother if he is not allergic. Whould any of you have him orally challanged? How else will I know? My MD seems to think he will be fine. Wendy

On Feb 10, 2003

Hi Doreen,

I think every exposure to peanuts will make your reaction potentially worse in the future. I have read somewhere that each exposure could potentially cause an even more severe reaction the next time.

However, I have not had a food ingestion reaction now since I was about 14 or 15, so I am a bit nervous about my next reaction (I am hoping there won't be one) since it has been so long since my last one.

Although I believe that even if I avoided peanuts for many many years, my allergy will not go away. I have not had a food ingestion reaction for 20 years now but the allergy is still there unfortunately (as I have noticed if I go to a place like Montanas, and then have to leave as I start to sneeze from the peanut shells in the bar area).

On Feb 10, 2003

I am just copying and pasting one of my posts from last fall for your info.

-My son had many small reactions prior to the age of 4 after taking a bite of a peanut butter product and spitting it out (never actually swallowed one). He has never liked the taste or smell of it but we never thought it was due to an allergy. He would sit there for 2 hours and cough uncontrollably. Did this make us question peanuts? Yes. But when we mentioned it to the pediatrician she said, "Just don't give it to him." In Dec. of 1999 he was at the next door neighbors house and they gave him a peanut butter cracker. They later informed me that he took one bite, spit it out in the dirt, and ran home. He was coughing, gagging, and couldn't swallow (saliva pouring from his mouth). This made me very suspicious but still could not get a referral to the allergist. In April of 2000 he ate 3 small pieces of cashews. Within 15 sec. he had hives all over, coughing, excessive saliva, vomitting, and diarhea. After all of this he got very tired and would just stare into space. I believe his blood pressure was dropping. We did not have the EpiPen but would have administered it if we did. I called the pediatrician whose nurse called us back in 25 minutes and told us he would be fine, just to give him 1 tsp. of benadryl.

When he was skin tested in 2000 we found out he was allergic to peanuts, pistachios, and cashews (plus environmental). His wheals were bigger than an orange. We continued to be very diligent about avoiding nuts and reading labels, contacting manufacturers. His next skin test in 2001 showed positive to peanuts and pistachios (wheal size 17mm) but negative to cashews. He also tested positive to almonds and sesame. He physically reacted to the skin test with throat itching and diarheea. He did have one minor reaction that year.

Several months ago he was RAST tested and the cashew (which was negative on the skin test) and pistachio showed up positive but the peanut was a class ZERO. The allergist recommended a food challenge. He is six years old now, and has not had a reaction in almost 2 years. It took at least four months before Jacob would even be slightly comfortable with this idea. He cried each and every time I mentioned it. He finally agreed to it and yesterday was our BIG day.

We showed up at 1:00 and they talked to us for a long time. They put some pb on his wrist and waited for 10 minutes. Then, when I was outside eating in the van (my husband was with him), they put some on his tongue. As soon as I entered the room he told me his tongue was burning, but I completely forgot to mention that when the allergist returned as things got very chaotic when she entered the room. She checked his stomach, face, back and arms for hives. He was continually asking for a drink of water. At one point I noticed a red mark on his neck, very visible, but she missed it. Her opinion of this was that he must have scratched his neck. Next they attempted to give him a larger bite of pb and he completely freaked (understandable as for the last 3 years we trained him never to touch it). The allergist actually told him that he COULD NOT react and that the challenge was for to calm the parents fears and to give us confidence. He was spitting it out and rubbing his hand around his mouth trying to get it out. I took a napkin and wiped it off also. My husband left immediately to buy some reeces pb cups or pb filled M&M's as we thought he might like the taste of those better. Within five seconds of his departure hives started to appear all over his face. His chin, cheeks, and one eye had hives on it. They did not want to treat this as a reaction. He was scratching his face but the allergist wanted to continue with the challenge. She INSISTED that he could not be a class ZERO and react with hives from that small amount. Her theory was that he must have irritated his skin while rubbing it off that he reacted in comparison to a skin prick test. You can still react to it many years after outgrowing the allergy. Finally, he started to become paranoid, his face was red and splotchy, and she decided to stop and gave him Benadryl. Her reccomendation was to wait another year. We had to stay for at least an hour waiting for the hives to disappear and during that time another hive did appear on his wrist.

I have decided NEVER to allow another food challenge unless we have (at least)two consecutive negative blood tests, as I will not allow skin tests anymore either (I also will not allow him to be treated by her again).

He also experienced another reaction about a month after this one. I called there when we returned home from our trip and made sure they documented that he was STILL allergic.

Just wanted to share our story and tell you to trust your instincts.

On Feb 10, 2003

Thank you, Erik, that's along the lines I was thinking.

Naomi, I remember reading your story. Thank you for posting it again. It really hit home, and I wasn't going to do a skin test. Now I know the reason -- it's all so automatic when you go to the allergist. See her skin test was lower, but so was her control (she had benadryl two nights before), so it was just how her body was reacting that day. It has always been as big as the control for peanut.

Well, Naomi, I believe you have thoroughly convinced me to wait until the two negative tests I had always hoped to get someday. That was my plan, now I just have to refer back to this post when I'm inclined to stray from it. Thanks for sharing again. And you too Erik, because I know people have said this before, but it really does help to have someone my age with the allergy that has lived a relatively "normal" (whatever that might mean) life.

On Feb 11, 2003

PS -- willsmom, with two negative blood tests I would consider it, but (forgot the exact time frame while typing) 13 months to 26 months doesn't seem like a very long time from diagnosis. I might wait a little longer, because if you check out other threads there is evidence that it can come back. Unfortunately, only you know your son -- like Naomi said trust your instincts. Sorry if this didn't help very much.

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