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Posted on: Thu, 08/31/2006 - 11:11am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Maybe all of these parents of food allergic kids who require no accomodations should have their medical records opened for public review. Perhaps the child is not being protected properly, maybe other parents could help that family define a stricter comfort zone in the best interest of their child. Fair is fair, no?
I guess I would see BASP's post as more genuine if it didn't seem the real concern was lack of cake, things that may be fun, heck I'd love to see my kids go hog wild at some carnival, but certainly not necessary for the well rounded education that BASP claims to be so worried about. We have recently acquired numerous memberships to science centers and children's museums for educational purposes, funny they can devote a whole science center to exhibits that teach and do not involve food. Funny that the children's museum can teach my kids the joy of reading with no food, yet the pre-school requires celery,peanut butter and various tidbits to stick in the goo.
Sort of on par with the school psychologist who just had no idea how to deal with "the parents who object to so much handwashing." I'd love to meet these parents. I know I was impressed that in one month we got a "health warning" sent home for lice, scabies, conjunctivitis, strep throat and various URI's, seems to me a lot of reasons to wash hands, and perhaps flea dip, upon entry to school. People also balked at the additional cleaning at school, food allergies aside I can't see myself objecting to that, a cleaner, healthier environment = fewer sick kids and fewer days missed = better education. So is education truly the concern?
Perhaps BASP should also be sure that their anger with the parents is deserved. I know our school district purposely changed things to a punitive instead of trying to put a positive light on things. The school tried to warn me the parents would not be happy, they certainly made sure that prophecy was fulfilled. Heck a big note goes home saying kids cannot play on the playground unless they wear sneakers. Well, what if all my kid wears is leather Mary janes? (Read- My child will only eat )
The bottom line is the school makes rules all the time. They could have guised everything under the new wellness plans, said not to send in candy for celebrations, send in two dollars instead for a punch and popcorn party in the gym, add a little music, heck take turns letting the kids decorate, doesn't sound like abuse to me. Instead they just take things away, or send home a list of restrictions instead of a list of suggestions, just to rile up the parents on how much they "can't" have. My favorite is that my son's whole class would be restricted from the parties, way to set the tone for his enjoyment of school. Let's just make it different for one class.
It's just food, go home and eat. A little harder IMO to hire a full out core of teachers to school in my house, guess I could push for homebound option, make the district pay big bucks, sure would make everyone's taxes go up. I just think it's a waste of education dollars which are already stretched when simple (YES SIMPLE) things such as restricted eating areas, handwashing and non-food rewards and parties could be instituted (which would not affect others educations the way the presence of those things affects my child's educational access) cost little time or money, and be inclusive for all. Don't think I've ever heard a parent say, "Go get a few cupcakes before we start your homework. You always concentrate better hyped on sugar." Unless these are the same parents who object to handwashing.
Maybe BASP could be the one to provide a positive direction for all of this, since a 4 yo and their allergies can change immensely for the better or worse, and but for the grace of god, it could be BASP's child one day. It's not rocket science, it's a little common courtesy. Nobody's telling you what to do in your home, you could have daily cake parties at your house for the deprived kids. I just wonder what motivates people to want to challenge accomodations for any disability, let alone one in which our kids could be dead in minutes. Cake and tradition is that important to you?

Posted on: Fri, 09/01/2006 - 1:52am
Carefulmom's picture
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Quote:Originally posted by BASP:
My daughters peditrician said 80% of these kids don't get worse as they get older
Either your daughter`s pediatrician misinformed you or you misunderstood him/her. I am a board certified pediatrician. The correct statistic is that 80% of the time peanut allergy DOES get worse with age. In addition, the older the child the more likely that the child will have airborne or contact reactions. In addition, each airborne exposure is an exposure whether or not the child has a reaction, and may decrease the chance of outgrowing. Also, airborne exposures can increase the severity of the pa making it more likely that the person will experience a fatal or life threatening reaction with the next exposure. It is very common for a child who has not had airborne or contact reactions to develop them as he gets older.
As a pediatrician, I recommend that ALL of my pa patients avoid airborne exposure for the above reasons, whether they have had an airborne reaction or not. EVERY peanut allergy has the potential to become airborne sensitive.
It is bewildering to me how a responsible parent working to keep his child safe fits your definition of "militant". That you have such strong objections to steps taken to keep children alive is astounding to me.
[This message has been edited by Carefulmom (edited September 01, 2006).]

Posted on: Fri, 09/01/2006 - 4:21am
LindyLovesA's picture
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Joined: 08/10/2006 - 09:00

This is what drives me crazy about PA... there are no common statistics... there are studies that say airborne reactions do not occur (actually covered at the FAAN confernece in Chicago), studies that say they get worse over time, studies that say reactions stay the same, studies that say aviodance is what helps outgrowing, studies where exsposure lowers reaction and RAST numbers, and lot of anidotal evidence that you can outgrow with high RAST, reaction history, and other food allergies, and adults have have minor reactions their whole life... so there is no ONE answer. There is no agreement among the doctors, researchers or experts, so we shouldn't attack others for having a different point of view on here or sharing a statistic that their doctor supports. If anyone knows the answers... please share it with the experts, because they are still trying to figure everything out.
Some of the studies... [url="http://www.allerg.qc.ca/peanutallergy.htm"]http://www.allerg.qc.ca/peanutallergy.htm[/url]
Lindy

Posted on: Fri, 09/01/2006 - 4:39am
joeybeth's picture
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Joined: 09/01/2006 - 09:00

i have been DYING to reply to this topic but was unable to post for over a week due to a glitch in my username or password or something after i attempted to update my email address.
i would not want to attack BASP in any way but it seems that every local PA person i've run into has the very same attitude which makes my efforts with school that much more difficult.
thankfully, my school has the attitude, "better safe than sorry" and has decided to err on the side of caution rather than on the side of not being cautious enough. i love my school......
....and i love the way they just say, "okay. we can do that." no one requests medical records (which i would provide...doesn't bother me...but i do see why it would bother some) and i love the way they don't question my concerns or give me the "look" (you know, the "you've got to be making at least some of this up" look).
i also love the way they treat my children like they were their own. makes my days so much easier while they are out of my care.
no situation is perfect but i sure wouldn't trade mine, as far as school goes, for a lot of other peoples' situations.
i just wanted to say...imo...it's as simple as it sounds. kids don't need snacks every time they turn around. they get lunch at school and generally that is enough (unless they have some special dietary need....different situation entirely). if a snack is just absolutely necessary for all the kids, then there are plenty of good peanut-free/nut-free choices.
to attempt to place the value of a cupcake over the value of a student is absolutely nothing but silly (and mean spirited, if you ask me).
someone suggested having "daily cake parties for all the deprived children" that cracked me up!!! that was possibly the funniest thing i've read in a while.

Posted on: Fri, 09/01/2006 - 8:47am
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

Quote:Originally posted by LindyLovesA:
[b]This is what drives me crazy about PA... there are no common statistics... there are studies that say airborne reactions do not occur (actually covered at the FAAN confernece in Chicago), studies that say they get worse over time, studies that say reactions stay the same, studies that say aviodance is what helps outgrowing, studies where exsposure lowers reaction and RAST numbers, and lot of anidotal evidence that you can outgrow with high RAST, reaction history, and other food allergies, and adults have have minor reactions their whole life... so there is no ONE answer. There is no agreement among the doctors, researchers or experts, so we shouldn't attack others for having a different point of view on here or sharing a statistic that their doctor supports. If anyone knows the answers... please share it with the experts, because they are still trying to figure everything out.
Some of the studies... [url="http://www.allerg.qc.ca/peanutallergy.htm"]http://www.allerg.qc.ca/peanutallergy.htm[/url]
Lindy[/b]
FAAN is hardly unbiased, since they are partially funded by the peanut industry. There are many food allergy websites with all kinds of differing information. For reliable accurate unbiased scientific information based on correctly done scientific studies, physicians go to the American Academy of Allergy Asthma and Immunology [url="http://www.aaaai.org"]www.aaaai.org[/url] All of the information in my above post can be found there.

Posted on: Fri, 09/01/2006 - 4:17pm
mcmom's picture
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Joined: 06/15/2004 - 09:00

I must have grown up under a rock, because I am over 40 and have never participated in, nor even heard of, a "cake walk". No, don't tell me either [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
But evidently not participating in one didn't scar me for life, KWIM?
If it's too cold outside for a carnival in October, what about just having it in May or June instead? just an idea.

Posted on: Fri, 09/01/2006 - 8:10pm
NicoleinNH's picture
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Joined: 06/21/2003 - 09:00

Edit
[This message has been edited by NicoleinNH (edited June 09, 2007).]

Posted on: Sat, 09/02/2006 - 11:31am
bandbmom's picture
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Joined: 12/14/2005 - 09:00

BASP could be a troll or may be a parent in denial. I received the message below from one of our local support group leaders, who talks about how the 5 stages of grief can apply to PA families. I think it may possibly shed some light on what BASP is all about.
Tracy
"We've all heard of the 5 stages of grief. They can apply here as well:
1. Denial
Upon hearing the diagnosis of food allergies, we as parents are shocked, especially if the allergy is newly acquired and to something
the child has been able to eat before without apparent problems. And especially if you have no family history or have known someone with food allergies to relate to.
2. Anger or resentment
"Why me?" or "Why my child?" are the questions asked now.
3. Bargaining
For some, and I hope not many, this may be the stage where you have reactions. These might stem from that saying we never want to hear, "it's only one bite". You've removed the allergen for six weeks and you try just a tad to test if what the doctor is saying is really true. This is bargaining. Or for those who don't suffer from anaphylactic reactions, bargaining may consist of giving a child a
bite of something you know will illicit GI reactions, because they would rather suffer the pain then miss out on a snack. Older children may bargain and make these choices themselves. Again, I hope not many "dwell" in the stage of bargaining for obvious health risks involved.
4. Depression
Acknowledgment brings depression. Now that you know "normal" has to be redefined, you may be depressed about all the things you can't do any longer or can't do without major pre-planning.
5. Acceptance
This is the stage where you've actually redefined "normal" in your life and you live within these new boundaries.
Keep in mind, you can go through the 5 stages of grief many times (in many cases with each new curve ball thrown your way.) It's said by
experts on the matter of grief, that people who never fully experience all 5 stages, are those that need to seek assistance. Dwelling in depression and never getting to acceptance can be a horrible way to live. Constant bargaining, where chronic health issues are concerned, can have very serious consequences as can denial.
As we all know, in most cases, all members of the family unit will go through some sort of grief over the diagnosis of food allergies:
- Food allergic children don't understand why this is happening to them on so many different levels.
- Mother's have the added responsibility, in most cases as primary caregivers, to figure out how to navigate avoidance.
- Father's feel neglected since their wives may be preoccupied with managing everything.
- Siblings may be resentful if the feel the food allergic child is getting more attention or if the mourn the loss of certain foods and
activities that are no prohibited because of the implications of the food allergies.
In researching this topic, I came across another "system" for defining stages of grief that I hadn't seen before.
TEAR:
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the lost object
R = Reinvest in the new reality
I almost tend to like this approach better - you deal with acceptance and pick up and move on from there and there is a focus on the fact that there is a new reality - something all of us know is definitely part of our lives as parents of food allergic children.
I hope this helps to focus some feelings you may be experiencing now, either because you are new to managing food allergies or because the added stress of the hustle and bustle of the holiday season is upon you and you may be more sensitive to encountering situations that involve food. Knowing the natural progression of feelings you will encounter can help get you out of a "slump or rut" so to speak. You can say - okay - I need to move on here and this is what I should be doing next...this has helped me on numerous occasions."
From Melissa Dalton (President of COFAF)

Posted on: Sun, 09/03/2006 - 3:08am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

Quote:Originally posted by bandbmom:
[b]BASP could be a troll or may be a parent in denial. I received the message below from one of our local support group leaders, who talks about how the 5 stages of grief can apply to PA families. I think it may possibly shed some light on what BASP is all about.
Tracy
"We've all heard of the 5 stages of grief. They can apply here as well:
1. Denial
Upon hearing the diagnosis of food allergies, we as parents are shocked, especially if the allergy is newly acquired and to something
the child has been able to eat before without apparent problems. And especially if you have no family history or have known someone with food allergies to relate to.
2. Anger or resentment
"Why me?" or "Why my child?" are the questions asked now.
[/b]
a lot of people get stuck here.

Posted on: Sun, 09/03/2006 - 4:03am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

...and hey-- Anger is the gift that keeps on giving. It is a hard thing to move past. Particularly when you get a lot of well-intended advice from clearly [i]clueless[/i] people that should just shut up about my kid...
I have moments of anger even now-- and I think that we deal with DD's situation remarkably well, and have for many years. Considering. But "normal" isn't what most people think, that's for sure.
But back on-topic. I think that [b]denial[/b] is much much [i]bigger[/i] than we on this board usually consider. Many PA families are not given epipens or even told that the allergy can be life-threatening [i]in anyone who has it.[/i] You don't often see them here-- because they think this board is [i]"for those poor unfortunates.... Whew! Am I ever glad I'm not like them...."[/i] [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] They don't understand they they [i]are just like us... they just don't know it-- yet.[/i]
Nobody ever wants to recognize the mortality of their child. But until you do, you still don't "get it." Great thing about the whole "disneyland" approach to entering the PA world is that "denial" as a stage simply gets skipped over after you see medical professionals working to save your child's life. But for everyone else, I can see how very alluring denial would be. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

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