DD\'s \"Touch Challenge\" at allergist\'s office today

Posted on: Thu, 08/21/2003 - 3:53am
Gail W's picture
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This morning my 9 year old TNA/PA daughter, Mariah, had a "touch challenge" at her allergist's office (St. Louis Children's Hospital). I thought I'd share some details about our experience...

[b]Background:[/b] Mariah has been sitting at a "Peanut Free" table in the school cafeteria since kindergarten. She will enter 4th grade next month. Last year, the PF table was a smaller table that sat only 6 students. Mariah hated the table because it [b]looked different[/b] than the "regular" tables and because it offered [b]fewer seats for friends [/b]to sit with her. Over time, the table developed a stigma where no one wanted to sit there. It was very hurtful for her and the school got involved too late to really address the situation effectively. So.... the purpose of today's "touch test" was to try to recreate what would happen if Mariah sat at the "regular" cafeteria table as she [i]very[/i] strongly desires.

[b]The "touch challenge"[/b]: This "challenge" was conducted at our allergist's office which is located at a hospital. We were not aware ahead of time what the exposure would be. Mariah stayed at a table and was asked to draw with a magic marker. She was monitored (lung sounds, peak-flow, BP) regularly. pretty early on, Mariah started having some visible facial hives and reddness around her eyes. They gave her another marker about every 15 minutes or so (total of 4) and continued to monitor her vitals. The nurse and our allergist played "hang man" and "tick tack toe" with Mariah so that they could readily observe her. Some of her intial hives and reddness resolved, and some other new ones appreared. Her upper lip had some minor swelling on one side, and she a slight runny nose. We were in the office for about 2 hours total. She washed her hands (at her own request) twice, but was not treated w/ benedryl.

[b]Details we learned afterwards:[/b] We learned that the table had been smeared with about 1 tablespoon of peanut butter and then cleaned with soapy water. They believed this contact would be a larger exposure than what would likely occur at a typical school cafeteria table where a previous student had a PBJ sandwhich. Peanut butter was also put on two of the markers and then cleaned off with a paper towel... one with a cleaner and one without.

[b]Conclusions:[/b] Mariah resolved almost all of her symptoms (hives, reddness, slight swelling) without any medication before leaving the hospital. The exposure did not affect her breathing/asthma. Based on this limited "challenge", our allergist will support Mariah sitting at the "regular" table provided that: 1.) the table is cleaned just prior to her sitting there, 2.) she moves away from someone sitting next to her w/ PB, 3.) she reports her symptoms to the cafeteria monitor.

These changes will be reflected in Mariah's IHP that we will review with the school staff next week.

Mariah is very happy. I'm a little hesitant. I guess we'll try it this fall and see how it goes. I'd like to hear everyone's thoughts about this "challenge" and what you would do if you were in my shoes.

Also, has anyone else had this type of challenge done by their allergist?

Thanks,
Gail

[This message has been edited by Gail W (edited August 21, 2003).]

Posted on: Thu, 08/21/2003 - 4:03am
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Frankly I am a little surprised that your allergist would recommend this. Seeing that this could then potentially happen on a regular basis or even daily basis at non PF table...won't this effect your daughter's ability to stay in class? Meaning if she has a reaction (and seeing that the area was clean)from touch and it takes 2 hrs for her symptoms to go away, wouldn't she then be out of the classroom for at least that same amount of time for monitoring?
I would push for a larger PF area or tables where her friends could join her rather then place her in a situation where she could/would be uncomfortable, and out of the class room for periods at a time.

Posted on: Thu, 08/21/2003 - 5:41am
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Gail,
I think if I were you, I'd feel encouraged that my kid is able to come in direct contact with peanut residue but not have a serious reaction. I suspect that my son would do well in this type of challenge, since he has never had a reaction at school in spite of very few safeguards in place to protect him from residue. But seeing an actual challenge like this must be reassuring.
From what you posted, it sounds like the challenge presented Mariah with a worst-case scenario and that the lunch table will actually be safer than the "challenge" table so, like you, I would probably feel comfortable dispensing with the PF table, especially at her age.
Thanks for posting this. I found your description of the challenge very interesting!

Posted on: Thu, 08/21/2003 - 5:48am
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I don't want to add to your worry, but I would be concerned that she might either rub her eye or eat something with the pb on her. Her reaction from the pb contact on her skin did resolve on its own, but you don't know how she would react if it got in through one of the mucous membranes.
If the pb-free area can't be made more appealing, and she really wants to sit at the regular table, she could bring either a placemat or small cloth (I've heard of people using bandanas) to eat on. Also, is there a way to make one end of the table pb-free to serve as a buffer.
Good luck,
Andrea

Posted on: Thu, 08/21/2003 - 7:26am
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Gail,
Thanks so much for such excellent reporting on a touch challenge.
I thought it was conducted in a very intelligent and rational way.
I think I would feel comforted by the results and the doctor's advice.
I am reluctant to say what I really want to say which is "if the symptoms went away without treatment then the exposure seemed self limiting and that is good news."
The reason I am reluctant is beause I really know nothing about repeated small maybe unnoticed exposures somehow becoming cumulative and making her antibodies multiply.
I still say this is good news and it gives me courage to send my son off to eat in a college cafeteria.
Additional: When I told this to my son he did not agree with me. He said it felt like "wait and see" to him and he would rather not chance it. He will be off on his own in a few days and I think I have to agree with him. For him it is not a good idea because he is 18 and too many years of avoidance have gone on for him. I still say it is worth a try for a nine year old. As long as she is aware of her symptoms and tells the monitor.
Peggy
[This message has been edited by Peg541 (edited August 21, 2003).]

Posted on: Thu, 08/21/2003 - 8:35am
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Thank you all so much for responding. It felt so good to come back and see your posts. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I think I feel what you all have said, "reassured" to some extent, worried about the potential for more frequent reactions ~and the cost of that in terms of "cumulative exposures" and perhaps a lessened ability to concentrate in class due to allergy symptoms (or grogginess if treated w/ benedryl).
It's hard for me because I feel I am now switching sides w/ the school: I'm asking the school to relax the safeguards which I worked so hard to create in the first place. I am learning that managing this allergy is a constant "work in progress".
Andrea, I agree with you 100% about the allergen entering the body through mucoal membranes (by rubbing eyes with fingers having peanut butter residue on them). This is precisely the premise of conducting this type of challenge. Mariah's eyes were definitely red, itchy, and there were several hives underneath. I suspect that wiping her runny nose with her "contaminated" fingers also contributed.
I'm not sure about the exposures being 'cumulative', Peg. I'd be interested in hearing more of your thoughts on that. The allergist explained that [i]when [b]all conditions [/b]are controlled that reactions are likely very consistent[/i]. But the tricky part is that conditions are never completely controlled (child may have a weakened immune system one day due to virus, the amount of allergen is variable, etc) in everyday life. So there is only so much that one can conclude...
I do worry, as CorinneM1 said, that if Mariah has these reactions that it will affect her ability to learn (allergy symptoms or grogginess if benedryl given).
I think the saddest (or maybe 'most powerful' would be a more accurate description) part for me is witnessing Mariah's drive to be "normal"... and how improtant it is for her to not be different. I wasn't really prepared for that part yet... Mariah's 9 and I didn't think I'd be dealing w/ these "peer' issues until closer to teenage years. But yes, as Sandra pointed out, this was intended to be a 'worse-case scenario' in terms of the amount of residue. So, I feel 'reassured' in that her symptoms resolved untreated.
We'll see. If she has multiple reactions, we'll re-evaluate. Our school is a wonderful, safe place for her to start learning more self-responsibility. I truly feel a partnership with our school and she'll get tons of support. In just 2 short years she will enter junior high.... and I want her to make a smooth transition. I want her to have experienced learning to manage herself at school and to have confidence in her ability to do so [b]before[/b] she enters those junior high school doors.
Ah Peg, I'm feeling a growing pain! Can you tell I'm giving myself a pep talk? [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] I hope you know how important your experiences are to those of us who need someone who's 'been there'.
Thanks everyone,
Gail
P.S. Peg, have you seen that commercial for MasterCard where the parents send their son off to college? Shows the cost of swimming lesson for an infant, hockey camp for a child, and as he gets older it show "the cost of letting go" as he goes to college? I think of you every time I see that commercial...
[This message has been edited by Gail W (edited August 21, 2003).]

Posted on: Thu, 08/21/2003 - 8:48am
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Quote:Originally posted by Gail W:
[b]Conclusions:[/b] Mariah resolved almost all of her symptoms (hives, reddness, slight swelling) without any medication before leaving the hospital. The exposure did not affect her breathing/asthma. Based on this limited "challenge", our allergist will support Mariah sitting at the "regular" table provided that: 1.) the table is cleaned just prior to her sitting there, 2.) she moves away from someone sitting next to her w/ PB, 3.) she reports her symptoms to the cafeteria monitor.
These changes will be reflected in Mariah's IHP that we will review with the school staff next week.
Thank you for taking the time to post this.
To me, it looks like a "Risk/Benefit" analysis (Informed Consent?) and quite possibly, a "Comfort Zone"? (I [i]finally[/i] found a way to explain the only way I can accept the term!!) No raised eyebrows either. In this case, a calculated decision based on [b]Knowledge[/b], not the lack of it?
Pretty powerful stuff.
MommaBear [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 08/21/2003 - 8:53am
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Just wondering.............
Is this "challenge" going to be written up as a type of clinical study in a professional journal? Although the population sample was small (ie: one), It sounds as if it was conducted under some pretty exacting conditions. Measurable, definable, etc........
Let us know! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Posted on: Thu, 08/21/2003 - 9:02am
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Quote:Originally posted by MommaBear:
[b] To me, it looks like a "Risk/Benefit" analysis (Informed Consent?) and quite possibly, a "Comfort Zone"? (I [i]finally[/i] found a way to explain the only way I can accept the term!!) No raised eyebrows either. In this case, a calculated decision based on [b]Knowledge[/b], not the lack of it? [/b]
Hey there MommaBear! Yes, I agree with this completely. We weighed the 'cost' to relinquish some 'safety' in order to gain some 'normalcy' for Mariah. We will learn whether or not this was a wise trade-off on this 'safety vs. normalcy' continuum.
BTW, I spoke to the school principal today and we agreed to keep all the other safeguards (e.g. no food in classroom ) in effect. We thought it best to only make one change at a time. She consulted with the Board Office, and said I need to provide the school with a letter from our allergist stating these new recommendations. (Document, document, document... [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img])
No plans for a write up, though it would make a good 'in the field' type of feature.
[This message has been edited by Gail W (edited August 21, 2003).]

Posted on: Thu, 08/21/2003 - 10:27am
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It is nice to know that you have an allergist that would do this kind of study. I've heard from a lot of people that their allergist just wouldn't take the time to do this, including my dd's. I also think that a napkin or some sort of a placemat is a great idea,I forgot who mentioned the bandana idea, but that is a great idea....maybe your dd will start a trend with her friends!! In my opinion, I think that if your dd wants to do this and is responsible, which she appears to be, then that's great, and I wish both of you the best of luck!
Tamie

Posted on: Thu, 08/21/2003 - 10:49am
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Quote:Originally posted by Tamie:
[b]It is nice to know that you have an allergist that would do this kind of study. I've heard from a lot of people that their allergist just wouldn't take the time to do this, including my dd's. [/b]
Possibly a "Professional Courtesy"? Particularly if a Professional feels comfortable with certain persons experience and Candor is welcome?

Posted on: Thu, 08/21/2003 - 11:36am
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Gail,
Could you refresh my memory as to previous, if any, reactions Mariah has had.

Posted on: Thu, 08/21/2003 - 12:38pm
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Sure, e-mom. Mariah has had 3 anaphylactic reactions from accidental ingestion.
Her first was at age 11 months with a babysitter...Mariah picked up a peanut that she found on the floor and put it in her mouth. The second was at age 3 from a yogurt covered pretzel (label was fine, but after inquiry we believe that the yogurt had been previously used to cover nuts). Her last reaction was from a muffin that, again, we believe, was cross contaminated. Based on different wymptoms we suspected walnut. Again, the ingredient label was okay and this is speculation based on inquiry and different presentation (she vomited profusely instead of having respiratory distress as in the previous 2 reactions).
So her most recent anaphylactic reaction (ingestion) was nearly 6 years ago. She has also had multiple 'contact reactions'. I used to keep a log on my computer they were so frequent. The most contact reactions she had in one year was the year before she started kindergarten (age 4 to 5)... about 25 or so. I remember that it averaged to about 2 per month. The number of reactions has continued to decrease each year since then. This past year (age 9), thankfully, she had 2 contact reactions.
MommaBear, you may be right about the 'professional courtesy'. I'd like to think that our allergist would do this for all his patients... and honestly I think he would. Truly. But I do believe that my husband being a physician (both employed by Washington University, no less) has some .... (searching for the appropriate word) advantages. My husband is usually present at Mariah's appointments.
Gail

Posted on: Thu, 08/21/2003 - 12:49pm
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Quote:Originally posted by Tamie:
[b]...and I wish both of you the best of luck! Tamie[/b]
Thank you, Tamie.
Please don't give up on finding a great allergist. I went through a few (3 others) before I found finially felt comfortable with this one. He is wonderful, truly cares about our family, and is very willing to work with us. We do have 'candor', as MommaBear stated. He seems genuinely facinated by Mariah's experiences (even though he himself has a daughter w/ a walnut allergy).
There [i]are [/i]great allergists out there... like many things, I think you just need to shop around. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 08/21/2003 - 3:47pm
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Gail, thanks again for the kind words but mostly the great information.
I don't know what I mean about small exposures accumulating into more antibodies. I don't even know if that is possible but we all discussed it awhile ago.
It makes sense if we are told that often reactions are cumulative, meaning in my book, get worse each subsequent reaction due to build up of more antibodies with each reaction.
Every time I see a paramedic doing their food shopping with the big rig parked outside I stop them and talk PA. Every one of them has said to me "Peanut allergy? Wow, that one is cumulative, don't be afraid to call us, we'll come and treat you seriously." My allergist said the same thing.
So if our kids are eating in the vicinity of someone eating PB are they having a reaction that does not come up to hives or wheezing or anything like that? A sub-clinical reaction. And can this be counted as a low-level exposure? Do we need to be concerned about this? Are they making more antibodies every time they sit in the vicinity of someone eating PB? Jeez, who knows?
We experience lots of professional courtesy as well but I think that touch test was so well organized it might be part of their normal routine. In any case it was a wonderful thing for them to do for you.
And it showed your daughter something that at age 9 she is capable of learning and remembering. Peer issues certainly pop up in 4th grade and your daughter has seen what happens when she contacts PB that "had once been there." She'll be more apt to limit her own exposure since she's done it once now and knows what happens.
I never saw the Master Card commercial Gail but I can imagine it. I have my own "commercial" packing his stuff away to leave next Monday. Real time in my living room!
As much as I am going to be bereft without kids in the house I am so happy to be sending them off to their lives. Their teenage years have been so much fun for all of us, that all worked out so well we can rest on our laurels for awhile till they graduate college and come back home trying to find jobs with degrees in Film Theory and Creative Writing!
Peg

Posted on: Thu, 08/21/2003 - 10:44pm
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Gail W,
Awesome allergist btw to have conducted such a interesting test for your dd.
Use all the safeguards necessary and see how it goes. It's totally worth the try so your dd can feel more in sync with her fellow peers.

Posted on: Thu, 08/21/2003 - 10:51pm
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Quote:Originally posted by Peg541:
[b] So if our kids are eating in the vicinity of someone eating PB are they having a reaction that does not come up to hives or wheezing or anything like that? A sub-clinical reaction. And can this be counted as a low-level exposure? Do we need to be concerned about this? Are they making more antibodies every time they sit in the vicinity of someone eating PB? Jeez, who knows? [/b]
Got it. Now I understand what you mean.
[b]"... but I think that touch test was so well organized it might be part of their normal routine. [/b]
This was the very first time they've conducted a 'touch challenge'. Similarly, in 1999 Mariah had an 'airborne challenge' which was also their first. Both times our allergist consulted with Dr. Alan Bock at National Jewish in Denver to develop the challenge.
Washington University has a medical school and is a strong teaching/research institution. We are extremely fortunate to have access to such a worldclass facility. If anything, my husband and I sometimes feel we need to 'protect' Mariah from being 'studied'. They currently are conducting 2 studies on asthma that Mariah declined to participate in.... and we have also declined their frequent recommendation to repeat the CAP rast. While it is 'interesting' to see if her numbers have gone down, we don't see any personal benefit (in terms of practical application) since her original numbers were so high.
Gail

Posted on: Thu, 08/21/2003 - 11:50pm
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Quote:Originally posted by Gail W:
[b] If anything, my husband and I sometimes feel we need to 'protect' Mariah from being 'studied'. They currently are conducting 2 studies on asthma that Mariah declined to participate in.... and we have also declined their frequent recommendation to repeat the CAP rast. While it is 'interesting' to see if her numbers have gone down, we don't see any personal benefit (in terms of practical application) since her original numbers were so high.
[/b]
*[b]I[/b]* asked our pediatrician to repeat the test (CAP RAST), but he declined. I [i]like[/i] our pediatrician. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Our son was asked ([b]not[/b] by his pediatrician)a while back to participate in a study for a new asthma drug which was injectible. At the time, FDA had not approved studies for application of this drug for peanut allergy. I *personally* saw a conflict of interest. We declined (it was not the only reason we declined ---- but it [i]did[/i] raise my eyebrow).

Posted on: Thu, 08/21/2003 - 11:51pm
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Hi Gail...
Could the contact reaction become potentially worse over time? That is one thing I would be worried about and could it make the allergy worse in the end by the constant exposure? These are questions I would like answers to as well. It sounds like your daughter really understands the allergy and will do everything to keep herself safe. If the allergy won't worsen and due to her own knowledge, I say give it a try. Best of luck [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 08/22/2003 - 12:04am
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Maybe Mariah's teacher could have the non-peanut butter bringing kids line up first for lunch and those with pb, last. You know how kids always want to be first in line. A teacher at our district's school does it that way. Good luck with the coming year.

Posted on: Fri, 08/22/2003 - 12:07am
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Quote:Originally posted by smack:
[b]Use all the safeguards necessary and see how it goes. It's totally worth the try so your dd can feel more in sync with her fellow peers.[/b]
An "Informed Consent"/"Risk-Benefit Analysis" of sorts (based on knowledge and not a lack of it ---ie: knowing what is at stake) is the only way *I* personally can define "Comfort Zone" and still not find the concept uncomfortable.
In my family's *personal*, *unique*, and *individual* situation..............
[i]we did not feel the "trade off" (safety vs. "normalacy" ----whatever that is----/ Risk vs. Benefit) was acceptable for [b]us[/b]. But a lot goes into that decision.
Therefore, we [i]removed our child [b]
entirely[/b] from the school building[/i]. And now homeschool. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
It wasn't only matter of what table my child sat at for lunch (and it is my understanding you have addressed many more issues with the school from your posts, Gail, and are somewhat satisfied with response?), [i]it was the entire building[/i] and much of what went on inside of it (including some key players) that influenced this decision.
Disclaimer: I am not offering advice in any manner or form.
MommaBear [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 08/22/2003 - 12:12am
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Quote:Originally posted by Gail W:
[b]
MommaBear, you may be right about the 'professional courtesy'. I'd like to think that our allergist would do this for all his patients... and honestly I think he would. Truly. But I do believe that my husband being a physician (both employed by Washington University, no less) has some .... (searching for the appropriate word) advantages. My husband is usually present at Mariah's appointments.
[/b]
Would you say, Gail, that "Informed Consent" may, in some instances, hold a certain weight when it is obtained from other healthcare professionals? Would such offer a greater level of protection or even latitude to the person obtaining it? Not saying it does. just wondering myself.
[This message has been edited by MommaBear (edited August 22, 2003).]

Posted on: Fri, 08/22/2003 - 12:19am
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Quote:Originally posted by KarenD:
[b]Could the contact reaction become potentially worse over time? That is one thing I would be worried about and could it make the allergy worse in the end by the constant exposure? ... If the allergy won't worsen and due to her own knowledge, I say give it a try.[/b]
Okay, allow me to indulge in a little parental bragging. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] [b][i]Mariah[/b][/i] asked the allergist this exact question... ("Will my allergy get worse if I have more reactions from sitting at the regular table?") to which he essentially responded "no".
I wonder if there are any studies that back up his answer... ?? I'll ask him this the next time we talk.
Gail

Posted on: Fri, 08/22/2003 - 1:56am
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Quote:Originally posted by MommaBear:
[b] Would you say, Gail, that "Informed Consent" may, in some instances, hold a certain weight when it is obtained from other healthcare professionals? Would such offer a greater level of protection or even latitude to the person obtaining it? [/b]
This is a very interesting concept. [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]
I want to make sure I am understanding you. Are you saying that because my DH is a physician that he is more "informed"? And therefore [i]his [/i]"informed consent" carries more 'weight' with our allergist? And because DH is 'informed' at perhaps the highest level one can be, that this offers our allergist greater 'latitude' working with us?
If so, yes... I think so.
But I'm not sure who has the 'protection' and/or 'latitude'? Us or our allergist? or both?
I'm thinking it offers our [i]allergist [/i] 'protection' too in that my DH is more 'informed' and thereby knows the risks. And it may offer [i]us [/i] more 'latitude' too in that we knowingly take these 'risks' due to our allergist's understanding that we are making decisions (consenting) with this higher level of 'informed' knowledge.
Is that what you're saying MB?
Gail
[This message has been edited by Gail W (edited August 22, 2003).]

Posted on: Fri, 08/22/2003 - 9:10am
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Quote:Originally posted by Gail W:
[b]
If so, yes... I think so.
[/b]
Do you think it would be difficult (if not unconvincing) to inform your allergist later that you did not "understand"? (Attempting to explain "certain weight". [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 08/22/2003 - 10:59pm
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Bumping up for nutcase who inquired in another thread...
MommaBear... Thanks for posing the question in the 'opposite'. I think I follow you now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
To answer your question, no... I think it would be essentially impossible for a physician-parent to claim afterwards that s/he didn't understand the risks of undergoing testing or the risks of any recommendations made based on the testing results.

Posted on: Sat, 08/23/2003 - 10:13am
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Quote:Originally posted by Gail W:
[b]
To answer your question, no... I think it would be essentially impossible for a physician-parent to claim afterwards that s/he didn't understand the risks of undergoing testing or the risks of any recommendations made based on the testing results. [/b]
Would you also say such is part of the profession that one cannot "turn off" at will? ie: permanent lifestyle modification related to one's perspective?

Posted on: Sun, 08/24/2003 - 12:10pm
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Yep. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 09/19/2003 - 3:40am
Gail W's picture
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Bump

Posted on: Sun, 10/05/2003 - 1:54am
Gail W's picture
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We received a copy of a letter from our DD's allergist to DD's pediatrician about the challenge. I wanted to share his report in the hope that this may be helpful to anyone who might be considering something similar for their child. It is nice to have Mariah's "contact reactions" legitimized by her allergist, and to see his documentation of such. Our allergist describes the challenge and these recommendations in the following 2 detailed pages:
[i][b]Re: Mariah XXXXXXXXXXX
DOB: XX-XX-XX
Patient ID#: XXXXX
Date of visit: 8/21/03
Dear Dr. XX,
We saw Mariah for a modified challenge to environmental exposure to peanut.
As you know, Mariah has severe peanut allergy with a past RAST value of greater than 100KU/L. There have been some episodes at school when she has gotten upper airway symptoms when presumably in contact with peanut butter. This has been approached by having a peanut-free table with good success; however, as Mariah has grown older, she has become excluded because of the peanut-free table, and she wishes to see what would happen if she ate at a table previously covered with peanut butter but then wiped clean.
Mariah arrived and went into the examining room where the small table for physician writing had been smeared with peanut butter and then wiped clean with dish soap and water. She sat at the table and started to draw with a marker. The room clearly smelled of peanut butter. Within ten minutes of arrival, she had nasal stuffiness and dark circles under her eyes. Then she had hives develop under her eyes and developed some conjunctivitis in her right eye. These findings remained stable and did not progress to any further symptoms. Because of the possibility that Mariah may encounter objects such as magic markers that have been held by children with peanut butter on their hands, we extended the challenge to give her sequentially magic markers that were smeared with peanut butter and then cleaned with first alcohol, then dish soap, and then just with a paper towel. As this challenge proceeded, she developed some swelling of her upper lip unilaterally (on the contralateral side from her unilateral conjunctivitis), and had red spots that were not typical urticarial lesions. over time, Mariah continued to sit at the table and draw. The symptoms did not increase to other areas, but resolved spontaneous. No treatment was given for any of the symptoms described.
Throughout this challenge, Mariah's peak flows remainded stable at a personal best of 280. Her blood pressure and pulse remained stable. She never had any respiratory signs other than the mild sniffling.
As time went by, there was an ongoing discussion about Mariah sitting at the regular lunch table. Mariah was excited about this possibility. Mariah's mother will will revise the food allergy action plan for the school eliminating reference to minor symptoms such as those seen during the challenge, prompting treatment with Benedryl or going to the school nurse. Mariah will be given latitude as to when she feels need of help. I believe Mariah is mature enough to handle this responsibility.
We did not evaluate Mariah's asthma today, but she reportedly has had no symptoms.
Impression:
1. Peanut allergy, severe by past history and RAST.
2. Environmental challenge designed to be similar to what might occur at school.
3. Mariah clearly had signs and symptoms during the challenge, but these were limited to the upper airway and did not progress, but, in fact, resolved spontaneously, even with ongoing exposure in the setting.
Plan:
1. Mariah can sit at a regular lunch table, assuming it is cleaned with with dish soap and water before she sits down.
2. Mariah's mother will revise the action plan for the school, and we will sign off.
3. Regular visit for asthma upcoming and scheduled.
Sincerely,
XX XXXXX, M.D.
CC:
[/i][/b]
Our comments:
No one in our family (me, husband, Mariah) smelled peanut butter while in the exam room. We think we're pretty sensitive to the smell...
[This message has been edited by Gail W (edited October 05, 2003).]

Posted on: Sun, 10/05/2003 - 3:01am
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Gail,
I deeply appreciate your personal commitment and devotion in this area. I address Mariah similiarly, but you being one of her parents and guardians (correct me if I am wrong), I feel the burden lies somewhat within your realm. Despite the any risks that Mariah assumes. I *believe* you understand this. Part of why I deeply appreciate your personal commitment and devotion in this area.
That being said, while I appreciate it, I don't know if I would or could show similiar stamina.
(I am also of the *belief* you will not take offense to my questions. Correct me if I am wrong. I have been before. On many issues. It would be of no surprise to me if I was again. Maybe it's just me.)
#1 Do you believe small reactions at the cellular level with subclinical symptoms, (or nearly) affect PA in any way?
#2 Do you believe it is possible to reduce [b]significantly[/b] such (if such exist) through personal behavior modification/and or avoidance in order to make a difference with regard to such effects? (ie: the prevention of subclinical reactions -- if indeed such occur, and if indeed such are monitorable to document any changes that may take place. (of course, if indeed, such do)
#3 Hypothetically, and assuming there is no "proof" that a reaction occurring at lunch in the proposed situation you describe [b]was initiated through events occurring at lunch[/b] (is such purely subjective, particularly if only through heresay and visual/auditory/tactile observation?)------ how would you "feel" if such a reaction (please forgive my use of words, but am having a difficult time "wording" the question I pose)------- again, if such a reaction caused great bodily harm to your daughter?
#4. I am assuming this is a "risk vs. benefit" decision? Is it? As I am only assuming and again, may quite possibly be wrong. Just wondering if the same proposed latitude prevails in other situations. Possibly those outside of school. If not, could you explain. If not, is it because possibly the same benefits in the exchange may not be available outside said situation? Again, please bear with me, as such "benefits" may not be high on my priority list. This being said while completely aware that "outside" my somewhat small personal box exists a world of personal preference and entreatment. (Ya know what they say about snowflakes. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )
MommaBear [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]

Posted on: Sun, 10/05/2003 - 3:48am
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Gail W
Thanks for posting this info.
I can't imagine the stress of waiting to see if Mariah reacted.I bet you are glad it is over.
How does Mariah feel about it?She must be one happy camper.
Love this site
Synthia

Posted on: Sun, 10/05/2003 - 5:24am
smack's picture
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Great Questions MB, I'm sure these questions go through Gail's mind as well.
I know they would mine.

Posted on: Sun, 10/05/2003 - 12:16pm
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Let me read over your questions, MB. I do appreciate them (and I am never offended by them). They will challenge me.
I guess what I want to say [i]for the moment is[/i]... I just don't know. I see Mariah as bright, beautiful, and hurting. It is the hurting that I am most vulnerable to. Currently she is undergoing evaluation for her learning disabilities. She is reading at 2nd grade level (is currently in 4th grade). She is very much in touch with her feelings and I often think of her as an empath picking up on the feelings of those around her. Yes, she is a beautiful and unique snowflake and often I do not know what is best for her.
I guess I just hope to see Mariah thrive. And the segregation that the school had imposed in order to keep her less exposed to peanut seemed to hurt her overall development more than protect it. Yes, it was absolutely a cost-benefit decision.
To be honest, I have felt some regret that I allowed the "contact challenge" to occur at all. I arranged it because Mariah hated her "peanut free" table so much and because she experienced it as "unjust". In retrospect I think she is right, it is unjust, and there is a large part of me that regrets not pushing the school instead of allowing my sweetest to undergo this clinical experience. Sadly, Mariah was willing to attempt this challenge hoping to be able to sit at the regular table. And saddest of all, despite her reation, lip/eye swelling and all, Mariah was [i]still[/i] willing to face all of that so that she could just sit with her friends at lunch.
I'm not sure what all that means. I'm still processing it. Let me ponder your questions.
Gail
[This message has been edited by Gail W (edited October 06, 2003).]

Posted on: Sun, 10/05/2003 - 1:09pm
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Gail,
Hello, Just wondering how the table is working out Mariah. Are things going well for her. I think that I would like to talk with our allergist and also try something along these lines as well.
Drew has only ever had "touch" reactions in the past. He has never to my knowledge had any respitory problems do to peanut exposure.
Drew also loves sitting at the table with the rest of his friends. He is "not" at the same table every day. They get mixed up daily after lunch.
His table is wiped down every day just before lunch. He has not had any reactions in school yet this year, although it is only October.
Thank you for posting about Mirah's challenge. Gives me hope for Drew.
Thanks again,
Renee [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Sun, 10/05/2003 - 4:57pm
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Gail W,
Thank you for sharing the details of your touch challenge. It has been very educational.
Although my child is a little younger, in many ways, I can relate to your angst. It is that struggle to balance physical safety with social normalcy that weighs heavily on my mind on a daily basis...
Please let us know how it is going w/Mariah.

Posted on: Mon, 10/06/2003 - 12:26am
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If I might Gail, I have thoughts of my own on the questions that MB poses, which might lend you some support. I consider the same issues, *exactly* as she posed them, in deciding when to loosen up my comfort zone.
My present comfort zone partly includes some exta zeal in hopes my dd will outgrow her allergy. However, if there comes a day where I feel convinced and accepting of this not happening, I might loosen up my zone, to allow more freedom and normalcy, paying close attention to her reactions.
I look at the potential cellular level insult as adding to the stimuation or readiness of the immune system, but at some point in time, I might want to feel out the true boudaries for my child so as to feel more confident when she is at a less supervised age, if that makes sense. For me, I do not know the magic age where I will accept this is truly forever, but maybe 10 is it.
I can understand your choices here and willingness to be as flexible with the system as you feel is safe. I think it gives you more clout later if you need to get tough on change as well.
This has been very interresting to read and follow and I hope it works out well for Mariah. becca
[This message has been edited by becca (edited October 06, 2003).]

Posted on: Mon, 10/06/2003 - 2:25am
Gail W's picture
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[quote]Originally posted by MommaBear:
[b]I deeply appreciate your personal commitment and devotion in this area. I address Mariah similiarly, but you being one of her parents and guardians (correct me if I am wrong), I feel the burden lies somewhat within your realm. Despite the any risks that Mariah assumes. I *believe* you understand this. Part of why I deeply appreciate your personal commitment and devotion in this area. [/b]
Thank you. Yes I do understand. As parents, we carry the burden... absolutely.
[b]That being said, while I appreciate it, I don't know if I would or could show similiar stamina. [/b]
I understand.
[b]#1 Do you believe small reactions at the cellular level with subclinical symptoms, (or nearly) affect PA in any way? [/b]
I'm not well versed on the science of the immune system. But I assume "yes" it would affect PA in some way. (I am thinking of another poster's wonderful visual of a glass having water slowly added to it. Eventually the glass overflows revealing the visual symptoms...)
[b]#2 Do you believe it is possible to reduce significantly such (if such exist) through personal behavior modification/and or avoidance in order to make a difference with regard to such effects? (ie: the prevention of subclinical reactions -- if indeed such occur, and if indeed such are monitorable to document any changes that may take place. [/b]
Yes... avoidance and behavior management are essential to reduce exposure. To what extent to avoid/modify is one part of the question, yes? And how "significant" the result is for that effort is the [i]other part[/i], yes? In my mind this is where the crux of the debate rests. The "comfort zone" thing. There is always some risk... the risk in this situation, for example, being that the regular table that has just been washed may have some residual peanut protein. And is that risk of exposure, and the compounded/repeated exposure over time, worth the "benefit" of Mariah not feeling segregated and punished?
[b]...how would you "feel" if ...a reaction caused great bodily harm to your daughter? [/b]
I would feel the haunting pain that I placed my dd in a situation that "harmed" her.
However, what I hope to convey so that you understand is that [b]I already feel that pain now[/b]... for having placed her in a situation all last year that caused her great "[i]psychological[/i] harm". "Harm" that she is angry and resentful for, "harm" that still causes her to cry in bed some nights, "harm" to her self-confidence, that has affected her relationships with classmates, that she now sees PA defining more of her identity than she wants because of the social implications that resulted for her, "harm" that may (on some level) be affecting her learning. These impacts are harmful as well, and I am not certain at this point in time how or if they will heal. I do not know how to measure or define their impact except that I know, as her mother, that they hurt her. They hurt her deeply. Are these hurts (i.e. "harms") not as serious or significant as the physical allergy symptoms or manifestations?
I see the "harm" on both ends of the spectrum. Certainly for the "bodily" harm that you ask about. [i]But MommaBear, am I not equally accountable for the harm that I allowed the school to impose on her last year under the assumption that is kept her "safe"? [/i] Is it not my burden to be accountable for any pyschological harm as well as bodily harm?
[b]#4. I am assuming this is a "risk vs. benefit" decision? Is it? As I am only assuming and again, may quite possibly be wrong. Just wondering if the same proposed latitude prevails in other situations. Possibly those outside of school. If not, could you explain. If not, is it because possibly the same benefits in the exchange may not be available outside said situation? Again, please bear with me, as such "benefits" may not be high on my priority list. This being said while completely aware that "outside" my somewhat small personal box exists a world of personal preference and entreatment. (Ya know what they say about snowflakes. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )[/b]
Yes, I see this as a risk/benefit choice. And the "touch challenge" was/is an attempt to try to gather more information to help us make a wiser, more informed choice with input from her allergist.
Mariah's school and home are the two safest and most supportive places for her to learn... learn about everything, including managing her PA. We are fortunate that her classroom is food-free, and that the school lunch program is "nut free", that the staff "gets it" and is supportive. There are multiple "safety nets" at home and at school. But at this point in time, those don't exist outside of home or school, and so "no" this does not apply to other situations. But perhaps, hopefully, giving Mariah a little more "latitude" at lunch while at school is one small first step in her learning the self-responsibility and independence that we hope she can achieve, and utimately [i]must achieve,[/i] wrt managing her PA.
Okay... how'd I do? Thoughts? I value everyone's input.
[This message has been edited by Gail W (edited October 06, 2003).]

Posted on: Mon, 10/06/2003 - 2:56am
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I only have a minute, but I wanted to respond... Gail, I think you have done a terrific job of balancing a mother's need to protect her child w/ the child's need to live her own life. My PA daughter has also stopped sitting at the peanut free table, for the exact reason Mariah did & I let her go w/out doing *nearly* the research you did. I think it is remarkable that you have built the kind of relationships w/ your doctors & w/ the school that you can work w/ them all in such a productive way to come up w/ a solution for your daughter.
And about this being a risk vs. benefit kind of decision, it is my firm belief that *every* decision is a risk vs. benefit (or cost vs. benefit, as I think of it) decision. All anyone can do is make the best choice from the inputs at the time & then periodically/continually (depending on the nature of the risk, etc.) reassess. It reminds me of the Indigo Girls song that goes something like "There's more than one answer to these questions, pointing me in a crooked line..."
Anyway, I think Mariah is a *very* lucky girl to have you for a mom.
Anne

Posted on: Mon, 10/06/2003 - 3:07am
Anne Parrish's picture
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Gail,
I tried to e-mail you to ask about your daughter's reading problems (our children seem to have a *lot* in common!) but the address I got from your user info bounced. If you don't mind, send me a note so I can get your address. My user info has a current e-mail address for me.
Thanks.
Anne

Posted on: Mon, 10/06/2003 - 1:51pm
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Gail,
there is always a certain sense of excitement/honor/intrigue when discussing such items with you.
You're right. It is my belief that health and safety are [i]inherent[/i] precursors to most everything else. I will also make note that neither my children nor I, nor my ex-Marine Fire Fighter Paramedic husband (lol) live "in a bubble". [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] Still have yet to meet someone who would consider any experience a fair trade for their last breath, save childbirth. But then again, one must consider the circumstances under which I have accumulated such *personal experience*. It is only my limited and personal experience.
Take my husband. Appears his profession (any of them) involves some [i]very risky[/i] behavior. Quite to the contrary, virtually all actions performed in the act of said professions involve [i]deliberate, calculated, and efficate ( [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]) [/i] behavior. "Preplans" are not predicated on the loss of "life or limb". I also want to make note it is my impression you have invested extensive efforts at personal emotional cost to inform/educate/reaffirm any decisions you make. I also feel it is a distinct possibility that your "preplans" are not predicated on the loss of "life or limb". [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
In all fairness, I will also make note that although I found much of my primary/grade school years to be [i]"a living hell"[/i], I found that "hell" easily escapable within the boundaries of those who unconditionally loved me. I have also found such support rare, but somewhat everlasting.
To the best of my knowledge such "hell" has not had an adverse nor prolonged [i]negative[/i] effect upon myself. But, again, [i]maybe it is just me.[/i] I [i]will[/i] admit to the retention of some life lessons. One of them being a great recipie for lemonaide.
This may be completely unrelated, but still, I feel a need to add it somewhere within my post:
It has been said on these boards that (in so many words) PA is a "hidden disability". Persons may be more inclined to accomodate a disability when one is limited to the confines of a wheelchair. The student in a wheelchair may find it difficult to change the circumstances of such "segregation/punishment/harm/hurt". Quietly considering how a student with such a difference may deal with the above. Or quite possibly, find no need to. Social constraints and normative behavior considered.
Again, I also understand there may exist a different level of accomodation/understanding in that particular situation. But I also contemplate what appears to be, to some extent, the ability (even if at certain risk/cost to personal safety) to disregard/leave (at a risk) the "wheelchair" with certain "hidden disabilities". (Disclaimer: I am not offering advice in any manner or form, merely making note of actions I have observed).
Again, thank you for making an investment and being willing to share it's dividends.

Posted on: Fri, 09/02/2005 - 12:14am
Gail W's picture
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raising for lovemykids

Posted on: Fri, 03/02/2007 - 1:26am
Gail W's picture
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raising for a related discussion on the Schools forum

Posted on: Fri, 03/02/2007 - 12:53pm
mistey's picture
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Gail, thanks so much for raising this. Somehow I missed it the first time around. I love the discussion between you and MB. It gives those of us reading so many things to think about. Different angles and perspectives. Thank you ladies!!

Posted on: Fri, 03/02/2007 - 3:21pm
NoPeanutsPlease.com's picture
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Hi Gail ... I read this earlier today not realizing that the initial thread was from 2003. It is an amazing test in many respects and the way you wrote about it captured the excitement and the fear that you would likely have experienced. Thanks (belatedly) for sharing the story.
I was wondering if you could provide an update as to how things have transpired in the past four years. How have things gone in the school? Has the allergy diminished?
Thanks again. NP.
------------------
[url="http://www.NoPeanutsPlease.com"]www.NoPeanutsPlease.com[/url]

Posted on: Sat, 03/03/2007 - 1:42pm
Chris PeanutAllergy Com's picture
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Joined: 04/25/2001 - 09:00

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/009192.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/009192.html[/url]

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