Need advice

Posted on: Wed, 09/03/2003 - 9:28am
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I posted about 6 weeks ago that my 15 month old had a reaction to peanut butter (the reaction was mild). Two weeks ago we took him to the allergist and he had a skin test; the skin test was negative. The allergist then recommended a RAST test. We received the results of the RAST test this morning. The test was positive. At this point we don't know the numbers, but I'm guessing the numbers are low, because the allergist would now like to do an oral challenge in his office! I have read this is a big no no because 1) my son is only 16 months old 2) it's not at hospital. However, I then asked a nurse at an allergy and asthma clinic and she informed this is safe in a clinical setting.

What would you do?

Jen

Posted on: Wed, 09/03/2003 - 10:05am
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I personally would just treat my child as PA (avoid contact with PN) until he was ready for school, then repeat the skin and RAST tests, if they were both negative then, I would allow a challenge. No-one under 3 needs PN in their diet.
If the doctor thinks the RAST test is inaccurate, why not just do another one?

Posted on: Wed, 09/03/2003 - 10:07am
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I would get a new allergist. Why in the world would he want to challenge a 16-month-old who might be allergic when no child with a susceptibility to peanut allergy should be exposed to peanut until age three?

Posted on: Wed, 09/03/2003 - 11:08am
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I agree with cynde and BS312

Posted on: Wed, 09/03/2003 - 11:50am
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Ditto the above, be vigilant and treat as PA for now, then challenge between the ages of 3 and 5, and get a different allergist. Get an epi script too.

Posted on: Wed, 09/03/2003 - 12:47pm
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I wouldn't do a challenge until the child was old enough to clearly communicate what he was feeling. If he reacts without hives this time, the doctor might not recognize it quick enough to take action.

Posted on: Wed, 09/03/2003 - 1:02pm
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Trust your instincts. If you are here asking...you probably are very unsure if this is the right thing for your baby! You are probably right!
I have a 20 month old who is allergic to peanuts (as well as many other things). She was just the opposite. She was negative on the RAST, but positive on the skin-test. I have made an appointment with another allergist. The one who tested her was not at all concerned about the peanut allergy (or the fish either...and I am not so sure Megan didn't have reactions to walnuts and shellfish--from a shared fork--as well). He sort of failed to mention that these are allergies that are usually not outgrown....and can be life-threating!! Did not even mention an epi-pen...Megan still does not have one (I was led to believe she didn't need one and wasn't at risk for that type of reaction)
I decided at 6 months, when I figured out Megan was reacting to peanuts through breastmilk, I would not give her peanuts again....until---I'm not sure when!! She will have to test negative on all tests, and then I am still not sure!! It is just not worth the risk!!
Oh, by the way, Megan also had 'mild' reactions. She threw up and had horrible stomach cramps. But that was only being exposed through breastmilk.....I don't know what type of reaction she would have if she actually ate peanuts!

Posted on: Thu, 09/04/2003 - 1:49am
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My thoughts exactly. New allergist...or go ahead and make the appointment for the year 2005.

Posted on: Sat, 09/06/2003 - 8:02am
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I would definately say no to the oral challenge. No child should have peanut before the age of three andway. Besides, you'd only be re-exposing him. Wait and re-test after age 4 with a new blood test.

Posted on: Sat, 09/06/2003 - 8:21am
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I personally would wait. At least try a different allergist before going ahead with it. If you have a large Children's hospital with a good immunology department..try there or make sure they specialize in pediatric allergy. I was very unhappy with the first allergist I tried & he was going to do the same thing (oral challenge). I went to another & he said he would not do anything until after age three (we knew she was PA..it was a pretty clear cut exposure/reaction). He did nothing until age 3 then did a skin & blood test. Skin was 4+ and blood was high enough that he said an oral challenge would by "too risky" at that level. We go back at age 5 just to do the skin & blood test. I do like him but my second DD is going to be tested at the Children's Hospital nearby. Doesn't hurt to have a different perspective. I feel educated enough to make my own calls. We avoid PB and always have epi & Benedryl..no reactions since initial. So far, so good. Definitely try another allergist.

Posted on: Sun, 09/07/2003 - 4:22am
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Ask your allergist how many children with PA he has diagnosed and treated. Grill him and find out why he wants to do an oral challenge next....

Posted on: Sun, 09/07/2003 - 11:25am
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What would I do? Knowing what I know, I'd high-tail it to another allergist!
Even without a history of PA in the family they say no PB before 3. With PA, it is 5 or later!
Safe in a clinical setting? Then how come people still die from PA in a hospital setting! Because they cannot guarentee to control reactions! Unbelievable! (frustration towards doctor not you pjama0502. DD's first allergist pulled something somewhat similar.)

Posted on: Sun, 09/07/2003 - 11:55am
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I agree with all other responses to wait and also get a new allergist.
There is no reason ANY child under 3 should have PN or TN. What is the allergist trying to gain by a challenge? The risks outweigh the gains in my book. If he insists, then I would push back and insist on a CAP RAST instead of just a RAST. It would be a relief to know if you have to avoid all 'may contains' along with peanuts themselves so another blood test would do that.
Good Luck!
Pamela
------------------
Mom to 2 y/o Karissa (PA >100 CAP RAST)

Posted on: Sun, 09/07/2003 - 12:00pm
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Hi Everyone,
Thanks for all the advice. My DH and I have decided that our son will not partake in the oral challenge. We're going to meet with the allergist and find out what the numbers are, but we're pretty sure we're going to go back to our son's ped and get a referral to another allergist.
Thanks again for your support,
Jen

Posted on: Sun, 09/07/2003 - 12:03pm
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Hi Pam,
I'm very curious about your CAP RAST comment. What exactly will a CAP RAST detect that a RAST would not?
TIA
Jen
Quote:Originally posted by Driving Me Nutty:
[b]I agree with all other responses to wait and also get a new allergist.
There is no reason ANY child under 3 should have PN or TN. What is the allergist trying to gain by a challenge? The risks outweigh the gains in my book. If he insists, then I would push back and insist on a CAP RAST instead of just a RAST. It would be a relief to know if you have to avoid all 'may contains' along with peanuts themselves so another blood test would do that.
Good Luck!
Pamela
[/b]

Posted on: Thu, 09/18/2003 - 7:52am
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Hello all,
I thought I would update you all. We saw our allergist today totally prepared to decline an oral challenge for our son and to get a referral to another allergist. However, our faith in our son's allergist has been restored. As soon as he came into the office he apologized for suggesting an oral peanut challenge. He said he had originally misread the age on the chart and he would never recommend an oral test for a child younger than 3 years old.
Before we got into the results I asked him about getting a Cap-Rast test (he kept referring to the blood test as a "Rast" test). He said the blood test was a Cap-Rast, he would not use a normal Rast test.
Anyway, he prescribed an epi-pen for our little guy and told us to come back when he was 3 or 4. Of course he warned us to stay away from all nut products etc. But when I mentioned phoning manufacturer's, he said phone if we were really unsure, but otherwise don't phone for every food it would only drive us crazy.
So my little guy is now officially a member of the PA club...
BTW - In case you're interested his score on the CAP-RAST was 0.94
Jen

Posted on: Thu, 09/18/2003 - 1:49pm
Driving Me Nutty's picture
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CAP Rast is also called 'ImmunoCAP test' and is supposed to be more consistent from lab to lab. There was a study that compared it to other most popular blood tests that were accurate about 50 percent of the time and the ImmunoCap was accurate 98 percent. [url="http://www.feingold.org/allergytest.html"]http://www.feingold.org/allergytest.html[/url]
When my dd first had a contact reaction, our allergist ordered a RAST test. When we met with an Allergist, he insisted we get another horrifying blood draw to have a CAP RAST done. He indicated that it was more accruate and more 'predictive' (low score, good chance of growing out of it). I recall the 'magical' number being 15. If she scored lower than a 15 then she had an 85% chance of never having an anaphylactic reaction.
The test measures the particular level of IgE antibodies to an allergen. The more antibodies there are, the more likelihood of a severe reaction because of the elevated level of histamines already in the body.
Here are some links;
[url="http://www.aaaai.org/patients/advocate/2001/winter/new.stm"]http://www.aaaai.org/patients/advocate/2001/winter/new.stm[/url]
[url="http://www.isitallergy.com/physician/whatisIm.asp"]http://www.isitallergy.com/physician/whatisIm.asp[/url]
Sorry for the late response. Hope this helps!
Pamela
------------------
Mom to 2 y/o Karissa (PA >100 CAP RAST)

Posted on: Fri, 12/10/2004 - 8:59am
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I'm fairly new to this too so i don't know how much help I'll be but I agree w/ you. We are in the same boat w/our allergist in VA. He refuses to blood test my DS (almost 2) until he's 4. I still don't really understand why...but when 50% of skin tests are false positives, why not get a blood test to back it up? Yes it will not be pleasant for my DS, but he's had blood taken before (when he was sick) and it bothered him for less than a minute. We have decided to go to another allergist, out of state even, in February for his take on the situation. It probably won't change his allergies, or what we do, but I think I need to have as much info as I can.
Hope this helps (and by the way, it has taken me over 7 months to decide to go somewhere else).
Melissa

Posted on: Fri, 12/10/2004 - 1:28pm
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Our allergist is very current and also did not blood test dd until age 5. There was a logical reason, but I just can`t remember what it was. I can figure out from your post who your allergist probably was. I am not justifying his tone, as it sounds sort of dismissive, but I think there might be a good reason not to do a RAST at age 2. I think it had something to do with taking awhile to build up antibodies???? Anyhow, it would have helped if your doctor had told you the reason instead of you having to rely on our speculations here. Maybe you should call and ask him what the reason was? I do know that at one point when our allergist was out we saw someone who is the guru of pediatric allergy here in Los Angeles, and I found him to be arrogant. Same with the most famous pediatric gastroenterologist in the U.S. who dd saw at age 1. Very arrogant. So maybe the person you saw, if it is who I think it is, is aware of his excellent reputation, and it has gone to his head?

Posted on: Sun, 12/12/2004 - 11:35pm
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My girls are now 8 and 6 and have been allergic since 4 and 2. We get yearly RAST tests done to moniter their levels. At this point, I just have my ped order the tests since she (and I) can interpret them.
We did see Dr. Wood at Johns Hopkins and he also advised yearly rasts on the girls... before the start of every school year.

Posted on: Mon, 12/13/2004 - 12:38am
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My son is 21/2 and was rast tested about 1 yr after his first scratch test. His allergist recommends a rast at least every year. I'm not clear on why one wouldn't rast test a 2 yr old, but would love to hear the answer if anyone has it.
------------------

Posted on: Mon, 12/13/2004 - 1:01am
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Thank you. Careful Mom, the doctor basically dodged every question. He seemed annoyed that I even asked questions instead of accepting his response as the only truth. That's not the way I work. I am the one responsible for my son so I am the one who needs to be informed. I am the one who is going to have to deal with it, not the doctoe Just because he is a doctor, does not make him a god. (Clearly he thought he was one!) I won't go back to him. This type of allergy is scary enough.

Posted on: Mon, 12/13/2004 - 4:45am
dgood's picture
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Wow, that is encouraging that through exposure to peanut products he has not reacted. Sometimes I wonder about the reliability of skin tests in that the serum can run from one prick to another to produce a false positive. I know this happened with my son when he wouldn't stop wriggling and some of the liquid from one prick ran into another prick area.
I would definitely find someone who you feel comfortable with and who is sensitive to your needs. It would be interesting to see what an updated test shows! If it is negative, why should you go through another year of stress?
Good luck!!

Posted on: Mon, 12/13/2004 - 5:06am
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FWIW:
We go to BCH and see Dr. Lynda Schneider (and the NP Karol Timmons).
Truth - We see Karol more than the doc, on our decision, really... at OUR point, the doc cant do anything for us -- we know the drill...
If I were new, Id want to see a doc that listens. Can I tell you that our Doc WOULD listen? I dunno. Its been a while we've talked to her [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] (we go to BCH each yr, but see the NP).
I can only image, being on the north Shore, where you travel to see the doc, but since hes not at BCH (Right?) maybe youd consider going there?
And if its who I think it is, Id be very surprised he shot you down like that!
You can email me, if you want some details, etc...
Jason
------------------
[b]* ENRICHED * [/b]

Posted on: Mon, 12/13/2004 - 7:14am
cooper's picture
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I had zero luck finding a good allergist north of Boston. Not saying there aren't any - but I couldn't find one. The guy my pediatrician referred me to was dreadful. I asked around and ended up going into Children's in town. We see Dr. Wanda Phipatanakul - been very happy with her. I think some people do feel comfortable relying on their pediatricians, but I like having the allergist on board. --I also think there's a thread in the Doctor's section of the board that is specific to Massachusetts.

Posted on: Mon, 12/13/2004 - 7:54am
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I got basically the same response w/DS. We saw the allergist initially when DS was 1yo...SPT, + for eggs and PN (we knew about the eggs, PN was a surprise). The dr said "we'll do a blood test when he comes back next year", then in the next sentence, said for us to come back in months (which was 'next year'). We went back 6 months later, then 2 months later, and I told him then we were probably going to put DS in daycare and wanted a little better idea on his allergies and asked if he would consider going ahead w/the blood test. Amazingly enough, he was more than willing to order the blood test.
A few days after our first visit, I called the dr's office and asked why they wouldnt go ahead w/the blood test. The nurse said the blood test would be more accurate the older DS got, so it was kinda useless to do it at that point..."we know he's allergic to peanuts and eggs, so just aviod those foods".

Posted on: Mon, 12/13/2004 - 8:36am
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My son is 5 and has a pn & tn allergies. His first reacion was at 2 1/2 . Mild compare to what i read here. We had him scratch tested at 3 and he was positive. I HATED the allergist for many reasons. This past year we were reffered to Dr.Young in Weymouth Ma. he aslo has a office at Childrens hospital in Boston. I only have met with him once, but really liked him. We did a blood test on my son for the first time and found that he was a 73.9 for peanuts. I was shocked it was that high. But at least now we know. My husband brought him back to get scratch tested for enviromental allergies last month. We actually had a follow up appt today to go over all these tests, but my son has the flu so we couldnt go. Dr. Young has written a book on peanut allergies.I really feel comfortable with him. I also have a son that will be 3 next month and i will bring him there to be tested also. If you need any phone numbers let me know.
Good luck
It is important to find someone you are comfortable with, it makes this a lot easier( if it can be)

Posted on: Mon, 12/13/2004 - 10:36am
Going Nuts's picture
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Turtle,
Our allergist doesn't put too much stock in the numbers. My son has only been "RASTed" once. His feeling is that the numbers tell very little about how severe or mild a reaction will be; past experience is the best predictor.
That said, it does sound like his attitude towards you was quite dismissive. That would p*ss me off big time.
Amy

Posted on: Mon, 12/13/2004 - 10:44am
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Get the blood test--skin tests are notoriously inaccurate. Since he's had pb and never reacted, it's possible that he's not allergic. (But don't get your hopes up--my son has never reacted and he's over 100 on the blood test.) The test you want is the ImmunoCAP (also called CAP RAST.) I would think your pediatrician could order it, but it would be nice to have an allergist checking the numbers and talking to you about it. As Amy said, the numbers won't really tell you anything about severity or even likelihood of reaction, but if the number is very low, he might not be allergic. If there's any reason not to test a 2-yr-old, I don't know what it is.

Posted on: Wed, 12/15/2004 - 10:54pm
turtle's picture
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Thanks all. I am definitely going to find a new doctor. I am glad my feeling are valdated here. We live just shy of New Hampshire and Boston is not that far away that we can't go to Children's.
Thanks again. I read these boards frequently and have found them to be a big help.

Posted on: Wed, 12/15/2004 - 11:14pm
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We see Dr. Burks at Duke. He said that all negative skin tests are accurate but only 50% of positive skin tests are accurate and they must be followed up w/ blood tests. Our first allergist gave my daughter 1 1/2 about 20 skin pricks and said she was allergic to EVERYTHING. After seeing Dr. Burks we found out that she has absolutely NO food allergies. We also were able to rule out some of my sons food allergies. Definitely get the blood tests. We have had a month worth of eating eggs and I must add that it is INCREDIBLE and if it wasn't for Dr. Burks we'd still be an egg-free home and wouldn't even know that it wasn't neccessary!!
[This message has been edited by robinlp (edited December 16, 2004).]

Posted on: Wed, 12/15/2004 - 11:50pm
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My daughter is living proof that all negative skin tests are not accurate. She had a negative skin test for egg. Three days later I gave her egg for the first time, and she went into anaphylaxis. I had to use the epi to save her life. She was skin tested again a few weeks later, and was positive for egg. I agree that a negative skin test is more likely to be correct than a positive skin test, but it is definitely not true that all negative skin tests are accurate. About having so many false positives and being told your child is allergic to things he is not allergic to, that is usually due to the pricks being too close together. In small children, our allergist only does a few at a time. It is more visits, but at least you know that there is enough distance between them that the antigen from one doesn`t spread to the next one, which basically cross-contaminates the skin tests.

Posted on: Fri, 12/22/2006 - 4:07am
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My DD age 6, also attends a private school, religious in nature. I found that the school receives no federal funding and therefore she does not qualigy for a 504. So, while all of the things you have on your list are fabulous, I wonder whether or not your school will meet you with resistance...the 'I don't have to do this' attitude.
I will be needing to devise a list such as this myself...since we can't get a 504. My hopes hinge on their willingness to accomodate my daughter when they don't [i]have[/i] to. My concerns for my situation, and maybe yours too, is that what makes me think, with the unsafe things going on in her class right now, without a 504, what makes me think they will agree to anything more,...I thought I had it spelled out well before...they just don't really get it. Do you think they will be willing to go the extra mile for your DD? What will you do if they aren't willing to accomodate further?
Hugs....

Posted on: Fri, 12/22/2006 - 5:58am
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One thought would be subsitute teachers and how they would be notified. I assume that each class has a notebook where info could be kept or the "approved" subs that the school uses are taught about allergies.
Looks like a complete plan - like the part at the end where they need to tell you where to direct questions...

Posted on: Fri, 12/22/2006 - 7:06am
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I think this sounds very good. I may have to be making one of these myself. I think if it clearly spells out what is to be done, they have something to go by and it could leave little room for messing up. I'm dealing with this myself right. Middle school is much more difficult to deal with than the elementary school. They have this notion that the kids should be more independent than they were in elementary school and don't seem to understand that it doesn't happen overnight.

Posted on: Fri, 12/22/2006 - 2:34pm
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[y
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Fri, 12/22/2006 - 2:51pm
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[QT
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Fri, 12/22/2006 - 3:03pm
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[
im
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Fri, 12/22/2006 - 4:07am
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My DD age 6, also attends a private school, religious in nature. I found that the school receives no federal funding and therefore she does not qualigy for a 504. So, while all of the things you have on your list are fabulous, I wonder whether or not your school will meet you with resistance...the 'I don't have to do this' attitude.
I will be needing to devise a list such as this myself...since we can't get a 504. My hopes hinge on their willingness to accomodate my daughter when they don't [i]have[/i] to. My concerns for my situation, and maybe yours too, is that what makes me think, with the unsafe things going on in her class right now, without a 504, what makes me think they will agree to anything more,...I thought I had it spelled out well before...they just don't really get it. Do you think they will be willing to go the extra mile for your DD? What will you do if they aren't willing to accomodate further?
Hugs....

Posted on: Fri, 12/22/2006 - 5:58am
Chicago's picture
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One thought would be subsitute teachers and how they would be notified. I assume that each class has a notebook where info could be kept or the "approved" subs that the school uses are taught about allergies.
Looks like a complete plan - like the part at the end where they need to tell you where to direct questions...

Posted on: Fri, 12/22/2006 - 7:06am
Lindajo's picture
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I think this sounds very good. I may have to be making one of these myself. I think if it clearly spells out what is to be done, they have something to go by and it could leave little room for messing up. I'm dealing with this myself right. Middle school is much more difficult to deal with than the elementary school. They have this notion that the kids should be more independent than they were in elementary school and don't seem to understand that it doesn't happen overnight.

Posted on: Fri, 12/22/2006 - 2:34pm
onedayatatime's picture
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[y
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Fri, 12/22/2006 - 2:51pm
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[QT
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Fri, 12/22/2006 - 3:03pm
onedayatatime's picture
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[
im
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Wed, 07/16/2008 - 4:22am
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How diligently are you avoiding trace amounts?? You have to also consider the possibility of cross-contamination of the individual ingredients used in the cake. Is it a box mix she uses -- is it a safe mix? How about the decors/icing/fondant/filling, etc. I am one of those extremely careful persons who avoids trace amounts and calls on every single product that comes into my home, and anything involving pastry is always risky. Many home based cake decorators like to use Wiltons products, which I personally do not trust.
Otherwise, I think thorough washing of mixing bowls, paddles, spatulas and cake pans will remove peanut allergen. Using disposable pastry bags and ensuring decorating tips are clean can help to minimize cross-contamination. It depends on your level of comfort and trust with this person.

Posted on: Wed, 07/16/2008 - 5:47am
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I would have a hard time with this if I couldn't check all the ingredients myself. My DS is pn only but we avoid tn just the same because of possible x-contamination. I'm getting ready to go to a lunch get together tomorrow and the person's house we are going to assures me she is using all pn/tn free ingredients including all may contains, but I'm still not comfortable with DS eating anything there and will still be bringing his own food. I just personally would say that is out of my comfort zone.
Can you ask her to look at all the ingredients and stuff yourself?

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