"Informed Decision"

An accusation suggesting that being on Always Learning can prevent one from making "an informed decision"


In mid-February Joyce (one of the moderators of Always Learning—a totally volunteer job done out of a desire to help people understand unschooling) returned a post for NOT being about unschooling. In response, the person wrote and quoted 2500 words about allergies.

I like where she asks whether Joyce feels she/Joyce has "the expertise and authority to declare 'dry boogers' that have been persistent enough of a problem that the parent is reaching out for help with the booger picking to NOT be a chronic condition for this child that might benefit from expert advice? Wow - bold."

Yes, Joyce is bold enough to comment on boogers (having had a child grow to adulthood, at home, not off wiping boogers under some school desk) AND bold enough to tell someone (very politely) to stay on the topic of how unschooling can help a family. There is more by Joyce below the long long post with the medical abstracts.

I was criticized. It wasn't for publication, just to Joyce, but I hate for all that writing to go to waste.

To moderate and not allow my response is to discredit my personal, and very real, experiences. In fact, Sandra's rant on the "gluten myth" demonstrates her bias, and perceived disdain, for those of us that actually experience the benefits of elimination.
"Elimination" is a term for defecation. Used by itself that way, it has for many decades (or longer) been about poop.

But it doesn't "discredit" someone's personal and real experiences to tell people to share them on a forum where they are the topic. There are people here with personal and real experiences in IV drug use, sailboating, restoration of late-60's muscle cars, medieval music and international banking.

What is credited and creditable in the discussion is experience with unschooling and the ability to express it in ways that will help MANY people in the discussion to understand it better.

One more quote from below, from one of the medical sources, and then you can read or skim or ignore:

Abstract
Food allergy in childhood is a popular subject which has attracted disapprobation from certain quarters because of overinflated claims based on flimsy evidence.


Date: Mon, 17 Feb 2014 04:25:20 -0800
Subject: RE: Nose picking and family hygiene
From: [email protected]
To: l…@….

Louise,

It's dry boogers, not a chronic runny nose or a stuffy nose. It's disempowering to suggest she jump so quickly to expert help before she's trusted herself to work on and better understand the issue.

Joyce

On Feb 17, 2014, at 2:06 PM, K Petherbridge wrote:

Joyce,

My seconding the suggestion to consider food allergy/intolerance and providing some background on my family was both to potentially help the older child with "dry boogers" as well as for her consideration in light her younger one - I believe who is 19 months old with chronic ear infections and about to undergo surgery to have tubes placed in ears when something as simple as investigating a possible connection to diet and the congestion/chronic ear infections.
(see e.g., http://www.ncbi.nlm.nih.gov/pubmed/10728925 and http://www.ncbi.nlm.nih.gov/pubmed/11083371 - these abstracts, and others relating to rhinitis and otitis media are pasted at the bottom of this message as well)

I also believe, and have experienced both personally & with my sons, the effect of dairy and "dry boogers." Dry boogers are a result of mucus, dirt, and other debris drying in the nasal passages - the mucus can, in fact, be a result of dairy (and, yes, gluten) allergy/intolerance. Other things, of course, can trigger nasal mucus, I'm sure. I just happen to have personal experience with regard to foods and nasal mucus that I wanted to share.

If a person chooses to not consider food allergy/intolerance as part of a health concern and/or chooses not to explore elimination of certain foods and would rather go the path of mainstream medical intervention, that is of course their choice - but it should be an informed choice.

Withholding information offered by others with personal experiences related directly to the original poster's query is unfortunate. To tell people that look up to you all that food simply CANNOT be part of such a condition (as Sandra so dismissively did, and you have done indirectly by blocking my response) is also truly unfortunate for so many who look up to you all in the Always Learning community.

Why so resistant to allowing members of the group to share and receive various perspectives and other people's personal experiences with foods and food intolerances when directly related to a question/concern? I've noticed the discrediting of food allergy/intolerance in other threads as well - obviously I have no idea how many other comments/responses are moderated and withheld from the group.

Aside from a growing body of medical research, there is an undeniably large amount of anecdotal evidence from personal experiences, such as my own on, the health benefits of eliminating dairy (and gluten and/or other foods) for some people with specific issues - like mucus-related issues such as stuffy noses, boogers, and ear infections.

In fact, as a PhD scientist trained in a biomedical environment at a prominent medical school, I would never have considered eliminating foods myself if my then pediatrician had not suggested it. I was skeptical but so glad I tried it after watching my colicky 3 month old change within days to a calm, happy, sleep-comfortably-for-hours-baby with no more blood and mucus in his stool or nasal congestion after I gave up certain foods while breastfeeding him. When we reintroduced dairy at age 1, he began having multiple and repeat ear infections over the next year or so - including a perforated ear drum twice and several rounds of antibiotics (sound familiar to the thread starter's later comments about her 19month old child who is about to have surgery to place tubes in her ears?!). We eliminated dairy and gluten by the time he was 3 - and he has not had another ear infection in 6 years. DS#2 was 1 when we eliminated gluten and dairy. Up to that point he'd already had 2 ear infections that required antibiotic treatment and has only gotten an ear infection again when he's eaten too much dairy (trying to be less controlling & open-minded parent & life learner that I am continually striving to be, I allow him to chose to eat dairy when it is available and decide for himself how he feels afterward and if he wants to continue eating it or take a break).

I am forever grateful to the pediatrician who suggested foods might be causing my breastfed baby's colic and later to the parents in other email loops that gently suggested food could be part of his extreme constipation (which led to impacted feces which could've required bowel surgery) and repeat ear infections. There are plenty of health issues for me since childhood that have also cleared up - I won't bore you with the details, but can say I wish when I was a child/young adult, someone would've made the same suggestion to me and my family. Perhaps back then, I would've dismissed the idea like Sandra (and presumably you) - but at least I would've had the information.

To moderate and not allow my response is to discredit my personal, and very real, experiences. In fact, Sandra's rant on the "gluten myth" demonstrates her bias, and perceived disdain, for those of us that actually experience the benefits of elimination. Even if, EVEN IF, it was all "in our heads" and not "real," why would that matter? Why wouldn't sharing that information still be helpful in some way? Who cares if someone else eliminates a food and feels better - whether it's scientifically proven or just "in their head" (and I assure you, it is NOT just in our heads - regardless - it shouldn't matter in the context of sharing personal insights and experiences in the hopes it may help another parent/child.)

Your message to Louise (but presumably, actually, me, Kristin) was:
"It's dry boogers, not a chronic runny nose or a stuffy nose. It's disempowering to suggest she jump so quickly to expert help before she's trusted herself to work on and better understand the issue."

Are you actually sure you have the expertise and authority to declare "dry boogers" that have been persistent enough of a problem that the parent is reaching out for help with the booger picking to NOT be a chronic condition for this child that might benefit from expert advice? Wow - bold. I'm not claiming I'm an expert in boogers either, but I'm sure suggesting that my family's experiences and my own scientific expertise have helped me and my family with very similar issues and that perhaps sharing my experiences could help this family.

To accuse me of attempting to disempower someone by offering my personal experience in this area is actually disempowering both myself and the parent to whom my message was directed - a message sent with sole the intention of empowering her with more information so that she can, in fact, "work on and better understand the issue." It is information that she should be allowed to chose for herself to consider or not.

With regard to the nasal congestion and booger issue - please see below for some examples of abstracts from medical literature that correlate food intolerance/allergy - particularly cow's milk allergy - to mucusy issues like otitis media (ear infection) and rhinitis (inflamed nasal tissues with stuffy/runny/mucusy nose) if you chose. It's the mucus that underlies the formation of boogers, and for some - ingesting certain foods such as cow's milk - triggers nasal mucus production - it's a simple as that. Other things, of course, can trigger mucus production as well and I was in no way attempting to discredit that. I simply wanted to share what I have found to significantly impact my family in this regard.

I have contemplated leaving the group at other times prior to this incident because the condescension I perceive from some of the messages, most notably by those I presume to be the leaders of the group - but I have accepted, in the past, that I am allowing myself to feel/perceive the condescension and that I need to think on it more, be more contemplative about why I felt that way.

However, I have now chosen to leave the group. For promoting an "Always Learning" lifestyle, there seems to be a great deal of control over the participation by members of the group which demonstrates to me that the moderators/leaders of the group are not open to learning new things themselves. To me, having an open mind - for example, not making judgments about other people's experiences or the effect that someone's message may or may not have on someone else in the group - is a critical part of this life learning journey and I seek to find like-minded folks and am unable to receive that from the Always Learning group while it is so heavily moderated and controlled.

Good luck to you all.

best,
Kristin

[NOTE FROM SANDRA as editor: These quotes were getting in the way of people moving on to Joyce's response, so I'm making them small. If you want to read them, there's a link at the end of each, or click here to see it larger.]

Ann Allergy. 1984 Dec;53(6 Pt 2):657-64.
Respiratory diseases and food allergy.
Heiner DC.
Abstract
Both upper and lower respiratory tracts can be affected by food allergy. Manifestations in either may be exclusively due to food allergy (common in infants) or may result from the combined effects of food allergy plus another defect such as gastroesophageal reflux, a congenital defect of the heart or tracheo-bronchial tree, an immunodeficiency syndrome such as isolated IgA or IgG4 deficiency, or a concomitant inhalant allergy. Chronic rhinitis is the most common respiratory tract manifestation of food allergy. When it occurs in conjunction with lung disease, it may be a helpful indicator of activity of the allergic lung disease and of the patient's compliance in following a specific diet. Recurrent serous otitis media may be solely or partially due to food allergy. Large tonsillar and adenoid tissues, sometimes with upper airway obstruction, may be caused, or aggravated by, food allergies. Lower respiratory tract disease manifested by chronic coughing, wheezing, pulmonary infiltrates, or alveolar bleeding may also occur. Lower respiratory tract involvement is generally associated with a greater delay in onset of symptoms and with a larger quantity of allergen ingestion than chronic rhinitis. Food allergy should be considered when there is a history of prior intolerance to a food in childhood or of symptoms beginning soon after a particular food was introduced into the diet. It is an important consideration in patients who have chronic respiratory tract disease which does not respond adequately to the usual therapeutic measures and is otherwise unexplained.(ABSTRACT TRUNCATED AT 250 WORDS)
PMID: 6239577 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/6239577

* * * * * * * * * * * * * * * * * * * * * * *

Hum Nutr Appl Nutr. 1985 Aug;39(4):277-93.
Food allergy in childhood.
Cant AJ.
Abstract
Food allergy in childhood is a popular subject which has attracted disapprobation from certain quarters because of overinflated claims based on flimsy evidence. In this article food intolerance and allergy are defined and the pathogenesis of food allergic reactions is considered. There is a description of the role that food allergy may play in urticaria, angioedema, anaphylaxis, eczema, asthma, rhinitis, cow's milk sensitive enteropathy, infantile colitis, inflammatory bowel disease, migraine and hyperactivity. Factitious food allergy is discussed and the general unhelpfulness of 'allergy testing' commented upon. Finally there is a description of the use of various exclusion diets in the diagnosis and treatment of food allergic disorders. It is concluded that food allergy is important in an increasing number of childhood diseases, but it is not clear what proportion of children with a given condition will respond to dietary measures. The importance of ensuring that exclusion diets are nutritionally adequate is stressed, and there is a plea to remember that an exclusion diet might be worse than the disease itself.
PMID: 3900003 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/3900003
(Note the final sentence - for some of us, the exclusion diet is preferred to the condition and medical treatment - but for others, perhaps not - however, all available information should be presented for informed decision making)
* * * * * * * * * * * * * * * * * * * * * * *
Acta Otolaryngol. 1999;119(8):867-73.
Cow's milk allergy is associated with recurrent otitis media during childhood.
Juntti H, Tikkanen S, Kokkonen J, Alho OP, Niinimäki A.
Author information

Abstract
To determine whether cow's milk allergy (CMA) in infancy is associated with recurrent otitis media (ROM) or other chronic ear infections, we conducted a cohort study by enrolling 56 milk-allergic and 204 control schoolchildren. We also studied the association between ear problems and different atopic manifestations. A higher proportion of children with CMA had had ROM. defined as at least 15 acute otitis media episodes by the age of 10 years (27%, vs 12%, p = 0.009), and had undergone adenoidectomy and or tympanostomy compared with the controls (48%, vs 28%, p = 0.005). However, this was only true of the children who had developed respiratory atopy. Asthma and/or allergic rhinitis, but not atopic dermatitis, posed a significant risk for ROM, while all the three atopic manifestations enhanced the risk for secretory otitis media. Positive skin prick tests with food, but not with inhaled allergens, tended to be associated with ear problems. In conclusion, we found that children with CMA in infancy, even when properly treated, had experienced significantly more ROM, the risk associating with concomitant development of respiratory atopy. PMID: 10728925 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/10728925
* * * * * * * * * * * * * * * * * * * * * * *
Acta Paediatr. 2000 Oct;89(10):1174-80.
Status of children with cow's milk allergy in infancy by 10 years of age.
Tikkanen S, Kokkonen J, Juntti H, Niinimäki A.
Author information

Abstract
To assess the development of milk protein tolerance and atopic diseases in children diagnosed for cow's milk allergy (CMA) in infancy, we conducted re-examinations of 56 CMA subjects at the age of 10 y using 204 age-matched controls. The children underwent clinical examinations and skin prick tests (SPT), and their IgE-specific antibodies to milk and five other food allergens were determined. By the age of 10 y, all but four subjects had become tolerant to at least small amounts of milk protein. However, gastrointestinal symptoms relating to more abundant milk consumption were reported by 45% of the study subjects and 15% of the controls (p < 0.001). The incidence figures for asthma, allergic rhinitis and dermatitis, as well as the occurrence of recurrent otitis, were three to four times higher than in the controls. Positive SPTs were seen in two-thirds of the subjects, the figure being highest (83%) in those with dermatitis onset CMA. Seven subjects showed positive titres of IgE-class milk-specific antibodies, and five showed a clinical response.

CONCLUSION:

This re-examination study showed that CMA in infancy, even when properly treated, has significant clinical consequences by posing special risks for respiratory atopy and persistence of atopic dermatitis as well as positive SPT and recurrent ear infections. However, each of these clinical manifestations seems to have an independent curriculum unrelated to the persistence of CMA itself.
PMID: 11083371 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/11083371


Joyce Fetteroll
To: K Petherbridge
Cc: [email protected] Moderator
Re: Nose picking and family hygiene

Kristin,

I appreciate this is important to you. But your fear that she can't find this information *if* she needs it is turning something that *as she wrote it* is common and ordinary into a medical condition.

This is an unschooling list not an allergy list. If after trying the suggestions she decides the situation is more serious any caring mom *will* delve further and find places where she can get a *solid* range of medical advice, not just a random selection from a few unschoolers on the list.

It would be irresponsible of her, and of the list, to pretend the list is a good source of medical advice. There are loads of places that alternative learners seek medical advice from. This list isn't, shouldn't and won't be one of them. It's strictly for ideas to understand radical unschooling. It's not for all information an unschooling mom might need to raise her family.

Joyce


From: K Petherbridge
Subject: RE: Nose picking and family hygiene
Date: February 17, 2014 at 3:41:17 PM EST
To: Joyce Fetteroll

Thanks for your reply, Joyce. But I am wondering - did you read her messages, as you state "as she wrote" them? She discussed her son's "mouthing" of objects, his habitual picking of boogers, and her 19 month old's chronic ear infections that are leading her to have surgery. These are, in fact, medical issues that the original poster presented in her first and her follow up post. That you chose to allow Sandra's messages against food allergy/medical issues but not other messages regarding the same, is straight up bias on your part & totally allowed as you are the moderator & can do what you chose. It's just silly to pretend you weren't being biased or that you were not allowing medical advice as a general rule. Nothing in my message was medical advice - it was, as I mentioned in my previous email, a sharing of my personal experiences.

You state:
"It would be irresponsible of her, and of the list, to pretend the list is a good source of medical advice."

I couldn't agree more. Again, I wasn't dispensing advice - sharing info that has helped my family and consequently helped our homeschooling journey. I wrote a short message & offered that she could email off list IF she wanted more info - this was intentional so that the group would not continue to receive messages that would, as you might see it, delve off topic.

What is irresponsible and, in fact, is much closer to doling out (negligent) medical advice than anything my original message to the group stated, is attempting to convince people that food allergy/intolerance plays no role in any of the issues that are brought up in this group from time to time with regard to health and behaviors, and that persons stating such are propagating "bullshit" as Sandra so kindly called it.

Kristin


END OF QUOTES
To this, I would like to comment:
For promoting an "Always Learning" lifestyle, there seems to be a great deal of control over the participation by members of the group which demonstrates to me that the moderators/leaders of the group are not open to learning new things themselves.
Over the years that we have had children, Joyce and Pam and I (and hundreds of others who have been helping others in some voluntary capacity—breastfeeding groups, birthing support, atttachment parenting, alternative education) have "learned new things" on every side of ever fad that came along, and will continue to do so.

What we have NOT done was to get swept up in them. What we have done is kept our focus, in these discussions, on unschooling itself.

For New Members of the Always Learning List About Posting to Always Learning Always Learning

The gluten rant referred to above is here: Gluten fright fad