Do you live a \"normal\" life with PA

Posted on: Wed, 08/01/2007 - 2:53am
mom2boys1975's picture
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Joined: 07/19/2007 - 09:00

This is by no means meant judgementally. I have been seeing lots of posts on how sheltered most of you keep your PA children/ children/ families to keep your FA child(ren) safe.

I know we all need to do what we feel comfortable doing to keep those that are FA in our families safe. I also realize the more allergies you are dealing with the more scary the world must seem to be.

I am working on educating everyone around us about ds PA. So far everyone has seemed pretty receptive to anything I have said. One neighbor/friend that we socialize with frequently is more paranoid than I am about peanuts/peanut products she may have.

I still let my 2.5 PA son run and play with the other children as I did 5 weeks ago before PA came into our lives. He is still young enough he isn't going to friends houses, but once he is old enough I want to let him.

Is this far beyond what everyone lets their child do? I want ds to have the same experience growing up as all the other kids do, with necessary restrictions to protect against peanuts. He is by nature very social and would wither away if I kept him away from everyone.

If you do let your child into the world to live as "normally" as possible, what extra steps do you take to keep them as safe as possible?

Posted on: Wed, 08/01/2007 - 3:14am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

This is the fundamental question that nobody can (ever) really answer [i]for you.[/i]
Eventually, you discover what you can live with (risk-wise) and what you can't (either through reactions or through loss of sleep).
Too many things play into this for anyone to really say what's 'right' for someone else.
Some of the things you'll need to think about:
** reaction history (as in, triggering doses, routes of exposure, and nature of reactions. But do be aware that past reactions are [i]NO PREDICTOR[/i] of future ones. Though past [i]amounts[/i] needed might be.)
** Family risk tolerance (are you skydivers? Or library surfers? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )
** child's personality (Impulsive? Cautious? Shy? Verbal?)
** other allergies/medical conditions
We are probably one of the most conservative families on the boards. We never fly, DD has never attended a bricks and mortar school, and she (at 8 yo) isn't left with anyone but one grandmother and my best friend, and then only for a few hours in our own home. We will not buy products for her consumption which are run on lines shared with peanut or egg containing products. She eats at one restaurant and will probably never attend a baseball game.
Is all of this necessary? Well, that is a subjective question. It is necessary for us.
We don't consider our daughter to be 'sheltered,' 'weird,' or particularly 'isolated.' For her, this lifestyle is evidently emotionally healthy. She is a happy chatterbox who can make a friend of almost anyone-- and does.
We work to make it so. For example, although we know that she is at high risk of developing allergies to them, we keep pets for our daughter's sake. It enriches her life immeasurably to have them. We have [i]tried[/i] to expand our comfort zone a few times only to find that it cannot work. Which is hurtful for all of us, but especially for DD.
We don't automatically say "No" without considering the risks (and ways to mitigate them) first. We have worked VERY hard to emphasize basic safety precautions with our DD-- don't touch your face, wash your hands, never eat food someone else offers you, don't go anywhere without your epipens, don't touch your face, wash your hands, don't touch, wash, don't touch, wash.... [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] Well, you get the idea.
But I cannot pretend that the world at large is safer than it is. She lives in a gilded cage, metaphorically speaking-- but as her parents, I have to accept that it is my responsibility to help her make the best of that with as little trauma as possible. Sometimes that means heading off likely disappointments. It [i]always[/i] means planning ahead in a way that most other families will never fathom. (And this is likely to be true no matter your comfort zone.)
Does this help at all? I hope so. You'll get used to it and find what works for your family. But only with time. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Corvallis Mom (edited August 01, 2007).]

Posted on: Wed, 08/01/2007 - 3:24am
mom2boys1975's picture
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Joined: 07/19/2007 - 09:00

Yes, it does. Even when someone has the complete opposite opinion that I do I like to hear why they feel as they do. I listen, process, think about it and see if it effects my opinion.
The most extreme example of this is the philosophy class I took my 1st year in college at 18. I am a Christian and my professor was a hard core Athiest. I knew by expressing my views and having to defend them I would get a lower grade in the class and he spent a lot of time challenging Christianity. He actually succeeded in strengthening my religious views.
I would never let someone tell me how to do this or anything. I just like to know how others that have been doing this much longer than I are doing it. That way we can learn from others and decide what works for us.
Thanks for sharing everything! I'm glad to hear your daughter is thriving. It sounds like you are doing a wonderful job.

Posted on: Wed, 08/01/2007 - 3:54am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Thanks. I think so too-- [i]some[/i] days. Just like parenting, really. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] How terribly unfortunate that none of it comes with a proper [i]manual.[/i]
The one thing I wish all families did while they develop a comfort zone is to try to use actual data to drive risk assessments.
So ask 'where do MOST reactions occur?' (The answer is in schools and restaurants, according to studies.)
Then, 'Where do fatalities happen?' (Restaurants. Hands down.)
Then try to reason why-- that allows you to evaluate how you choose to respond/modify those situations to make them less risky.
We also try to classify situations into those where we have: a) good/total control, b) some control, or c) no control. Within that, we look at how inherently [i]risky[/i] each situation is. For example, ordering Chinese food or eating peanut brittle in our house would be a type A situation, where we have nearly total control.... but still VERY high risk given that our daughter is demonstrably aerosol and contact senstive. (We don't do that very often.... we [i]have[/i] eaten non-pn oriental food on disposable plates in our backyard with DD in the house.) Going to the local playground, on the other hand, is a type C situation, but one which I tend to consider 'acceptable' risk now that DD is old enough not to put her hands in her mouth. Sometimes she gets hives from things that we assess that way. But we also try to [i]time[/i] things so as to reduce risks.
We never go to the park at lunchtime, for example, or if there are three birthday parties being held there. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Just a couple of examples do demonstrate how we assess risk.
The other factor that plays into that is ease of escape. If you are in a situation you can't [i]leave[/i], that automatically ups the level of control and safety that we require. We have a rule that any one of us can pull the plug at any time for a percieved safety risk. No arguments.
You'll also develop a lot of skill in making things up to your child. That way, if you find you [i]must[/i] forgo something or leave an event, your child learns that this is not the end of the world. Far from it.
There [i]will[/i] be fewer birthday party invites, sleepovers, etc. with a PA child. Other parents tend to be either frighteningly cavalier ('Can he have peanut [i]butter?[/i] Oh, you don't need to show me how to use that epipen-thingy. I'll just call you if something happens.') or terrified. It sounds as though you've already seen one of the latter.
It also helps to be aware of the bias that every human tends to introduce to risk-benefit analysis. We (psychologically) tend to [i]minimize[/i] actual statistical risk when it is familiar, commonplace, or something that we choose to do or feel we have control of.
We also tend to [i]over[/i] emphasize risks that are unfamiliar, out of our routines, or those that we feel we are unable to opt out of or control.
So most people consider driving to be 'safe' but many people are afraid of flying, and use weedkiller in the yard but fear mosquito spraying by the city. We fear food irradiation, but willingly consent to dental x-rays.
I try to keep that in mind when I'm working in an area where there is no reliable data.

Posted on: Wed, 08/01/2007 - 4:14am
Greenlady's picture
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Joined: 06/30/2004 - 09:00

Our "comfort zone" has changed radically over the years. It started very loose, at around 18 months - avoiding obvious peanuts but not "may contains", and we didn't have an epipen. We dealt with a few minor reactions, and then at age 3 came the anaphylatic reaction. After that, comfort zones got much tighter.
However, over the past couple of years, we have been slowly loosening them. The big decision last year was to let him go to a Tae kwon do camp, even though other kids could bring pbj. I initially insisted he go to a peanut-safe summer camp, but he absolutely hated it. Most of the kids were younger and he felt out of place.
At his tae kwon do camp (he went back this year), lunch is eating on the practice mat, so there is a risk of cross-contamination that is not there at school (where he eats at a peanut free table). But they do wash the mats afterwords, and he eats directly out of his lunchbox, so I finally decided it was worth the risk.
I should point out, though, that even though he had a serious ingestion reaction, he has never (as far as I know) had a contact or aerosole reaction. This plays a lot into our decisions.
For example, he is allowed to go play at certain neighbors houses, but as an extra percaution he is not allow to accept an offer of a snack, even if he "knows" it is safe.

Posted on: Wed, 08/01/2007 - 4:28am
lilysmom's picture
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Joined: 07/20/2007 - 09:00

I try to live a "normal" life with my PA daughter, we have traveled to Haiwii and on airplanes, I have learned to take the red-eye and wipe everything down, (she sleeps and there are no snacks served). She attends a peanut free daycare center who are extremely careful and the rules for bringing in outside food is very strict. My biggest challenge is playdates, I plan them all at my peanut free home to avoid reactions and temptations I'd rather do the clean-up and planning then risk an ER visit. In the two years she has been diagnosed she has had only one minor reaction since the initial reaction so I say I have been pretty lucky. Do I avoid public parks and pools no I am just extra vigilent when there and look like an super overprotective controlling mother but I'd rather risk looking that way then have my daughter not be active and have what everyone else thinks is "normal".

Posted on: Wed, 08/01/2007 - 4:47am
niche's picture
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Joined: 02/05/2007 - 09:00

We Try to help him live a normal life. He's 5 years old
School
He goes to montessori, until recently I really don't think he was very safe there. Now I think he is slightly more safe. I finally had a big sit down with most of the main summer teachers and now I feel like they may at least pay more attention to him if he does start to have a reaction. The school is "peanut free" I put that in quotes becuase even though they say that people still bring in Peanut butter from time to time. His teacher has sent some snacks back that have obvious nuts in them but let the honey nut cherrios stay - which scared him pretty badly. I think we will be getting him a phone soon.
I worry my self sick every day but most days he doesn't and he is out there.
They have activities at the school like art, tennis etc. He on his own refused the gummy bears the tennis coach was giving out - good thing since the ones I saw at the store were may contains.
I finally figured out that he has to own his own safety. He has to refuse food from anyone but us or an approved person (grandma). He has been more reliable than the adults in this regard.
Unfair because he is still so little yes, necessary IMHO yes.
Restaurants - we still go but much less often. I have found calling ahead to the manager asking how they prepare this or that helps in addition to talking to the wait staff. We never never have dessert out - unless it is from a soft serve machine (wendys etc). We don't order salads except dinner salads and ds doesn't share our food. He used to love the bread they bring and croutons - he no longer has those. We do eat fast food from major chains. We dont' take him to Asian places. We wipe down the tables.
Activities - sports
He has been in t-ball and soccer this fall he is doing football. My husband volunteers to be coach or co-coach and at the beginning of the year we announce the allergy and ask every one to please not bring snacks containing nuts. We still check the packages and about 2/3 of the time he can't have it (usually may contains) so I always have something for him just in case.
Other peoples houses - not yet not for us, maybe when he is older.
I could go on...
Nichele
DS 5 PA, TNA
DD 1 ???????

Posted on: Wed, 08/01/2007 - 5:08am
Anonymous's picture
Anonymous (not verified)

Our first hint of a problem was at about 10 months. The day care called saying he had red whelps. I picked him up, took him home and thought what in the world? The next problem - about a week or two later, same thing. The day care worker said "we gave him PB on a cracker, is he allergic?". I had no clue. Said I had never given him any PB. Next time - week or so later. Day care called and said "Red whelps again. We gave him PB - so that must be it".
I was nonchalant. Nothing but a rash anyway. Simply told the day care, don't give him anymore. I had NO CLUE! Ok at his one year checkup I casually mentioned he seems to be allergic to PB. His pediatrician clued me in - and I found out it may not be "just a rash" next time! [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]
Well, he has two older sisters, they like PB. I thought, just don't give him any. As I said - I WAS CLUELESS! Anyway, at about 18 months old, I baked PB cookies for his sisters. He swelled up immediately. He did not ingest any - was just in the house. Benedryl cleared up the reaction. Made note to self *he is aerosol sensitive*.
Next reaction about age 2, at a private sitter. He picked up a PB lid - facial swelling and rash. Benedryl cleared up the reaction. Note to self *he is getting bigger reactions each time*.
Next reaction about age 5, DH (dumb husband) left PB knife on counter, Shane said he did not touch it - only smelled it (??) Anyway, this time, trip to the ER. Facial swelling, mucus flowing, rash, squeaky voice... Note to self *he did not even ingest any, reactions are getting even worse!*
Next reaction about age 5, fly to Disney and they pass out bags of peanuts, everyone opens their bag and Shane starts facial swelling and wheezing. Benedrly stopped the reation. *Yep, aerosol sensitive*
Next reaction about age 7, same DH (dumb husband) took him to Dairy Queen [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] Ordered a Reeces Pieces blizzard! I KNOW!! He said "I wasn't thinking - I thought it was Skittles". ???????? One small sip - immediately puts it down and says, "I don't feel good daddy". Commences to throw up all over DH's truck (deservingly so). As it was straight in, straight out - benedryl cleared this reaction. After this the light bulb goes off for DH and after 6 years, he finally *gets it*.
Next reaction: about age 8 or 9. He put 1/2 peanut in his mouth. LONG story, sorry. Anyway, this was a new to us used car purchased for my teenage daughter. He was in the backseat and having an oral fixation likes things in the mouth. Picked up from the floorboard what he thought was a stone and put it in his mouth. He sucked on it one second then threw it into the front seat. About that time, I pulled into the grocery store, he gets out and says I gotta go to the bathroom. He avoids eye-contact, I was oblivious. He comes out of the bathroom with facial swelling, mucus running everywhere, hives popping up and voice begins to squeak. OMG! A *mystery* reaction?? I did not even have benedryl - walk in the pharmacy section garbbed a bottle of benedryl off the shelf open it up and dose him, three times, throw money at cashier and go straight to the ER. I still do not know what the he11 ?!? Finally, he confessed "I think I put a peanut in my mouth". I go out to the car and ACTUALLY FIND THE 1/2 PEANUT!! Get this - it is still intact. He did not actually ingest anything but trace amounts. This reaction takes days for the swelling to go down despite the steroid cocktails.
I wrote this out kind of quickly - may have forgotten a thing or two. But as you can see, each reaction has been to a definite peanut source - no mystery reactions, no cross contamination reactions, no contact reactions at school (after actual diagnosis), etc. Has he been lucky? Maybe. If he had any of these type reactions, would our comfort level be different? - Of course. You adapt to what works and to what doesn't work!
Sorry so long.
Have a blessed day,
Bridget

Posted on: Wed, 08/01/2007 - 5:29am
Anonymous's picture
Anonymous (not verified)

Only answered 1/2 of your questions. The other part: Have people been receptive to keeping him safe? Actually, YES. But time does not allow another long answer.
Just an example, the junior high he attended the last two years, removed all KNOWN peanut products. Thus reducing the chance of reaction greatly.
Sorry, gotta run!
Have a blessed day,
Bridget

Posted on: Wed, 08/01/2007 - 6:07am
mom2boys1975's picture
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Joined: 07/19/2007 - 09:00

This allergy is so mysterious and frightening. I would like to take a middle road in how we proceed. No peanuts or peanut products (obviously) no may contains, no store bought ice cream, no baked goods from the store, nobody watches him unless they are given the info they need verbally, written, and I feel I have thoroughly scared them (joking butnot totally). I also have the Peanut Allergy Handbook for those who take care of him.
Part of the reason my neighbor/friend is so freaked is because she was there when he had his rx that took us to the ER. Hives, facial swelling, drooling uncontrollably. It was scary. He was moving air just fine and was released by the ER 6 hours after his epi dose. Her daughter who also babysits for us was there too. By seeing they definately believe and don't want to do anything to harm him. They adore him and saw for their own eyes how real this allergy is. She wants to "get it" and know how to feed him safely.
For my sil and her family (household) I will write up lists for them. How to clean surfaces that have been exposed to Peanuts, general rules (no shelled nuts, foods to always avoid, things to look for on labels) what anaphalaxis looks like, and how to treat a rx. I may have missed something, but that in general is what I will give them. Oh and don't go anywhere without 2 epi pens and benedryl. Though he should be right at the house.
it will also only be for 2-3 hours at a time so I am sure they can keep him safe for that amount of time.

Posted on: Wed, 08/01/2007 - 8:48am
lakeswimr's picture
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Joined: 02/01/2007 - 09:00

Well, DS is very happy, active and social but I do a lot of behind the scenes work to make this happen. You can give him a "normal" chilldhood. You will probably find some things your child can't or shouldn't do in order to stay safe, though. I mean, if your neighbor is going to make peanutbutter bird feeders with all the other neighborhood kids you will need to sit that one out. That one is pretty obvious. There are *many* situations that are much more gray. Most who deal with food allergies go back and forth between feeling as you do now and then feeling very protective of their child and then back again to wanting things to be "normal". The thing is, this *isn't* normal. Food can kill our children, even tiny amounts, and other children eat this food that can kill our children. There are things to do to make playing together safe. There are some situations that you can't make safe, though.
This is what we do. We don't go to any potlucks. We would *if* people would make the potluck peanut, nut and sesame-free and then wash or wipe their children's hands (with Wet Ones or other similar type of wipes -- not baby wipes). But my friends weren't willing to do that and so we don't get invited to many potlucks. I was really sad about that. DS was diagnosed at 2 and we had formerly been very social and invited to many events with food. After that we had about a year or so where I really was struggling to find ways to satisfy DS's social needs but once preschool started we had *more* than enough. All our friends we hand out with now are willing to accommodate his needs. And we have more friends than time to hang out with them, thankfully. We are very lucky.
We tend to have people over here or host things rather than to go to others homes. We do go if the people will wipe down the counters, eating area, etc before we get there and prefer homes where they don't allow eating all over the house but just eat in the kitchen/dining room area. And we ask them to not eat peanut, nut or sesame products when we are there and to wash/wipe after they eat things with dairy or eggs. People are happy to do this in most cases. Most say, "it really isn't a big deal at all." If peanuts, etc are more important to them than having us over that says something in some cases. In some cases the family eats everywhere and doesn't always clean often so even if they wanted to accommodate us they could not do so easily. So we meet at parks or other places or here at our house.
My friends go out of their way to make their children's bday parties safe for my son (or they are nice enough to discretely not let us know we aren't invited and everyone else is.) I haven't felt left out of anything in a looooong time and DS has never felt left out (which is all that counts). I would shield him from any of that if it happened.
At b days we bring his own special treat and wipes and others are very nice about having everyone wipe after they eat. Some friends made all the food safe for DS!
We don't leave him with just anyone. In fact, we almost never leave him but recently we found some good local sitters. No family here otherwise we would leave him with my parents.
There are just things that are different for us. A year or so ago a very good friend's grandaughter was trying to kiss DS. It was the most innocent, sweet thing and I had to interrupt and tell the two that they could not kiss. She eats peanut butter frequently and that wouldn't be safe.
I am not sure what things you are worried you will have to give up. You will figure out what works for your family. I think you will find a way to protect your child and still keep him very social. Libraries, music classes, gymnastics, soccer, etc are all great ways to meet other children and play without food.

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