What Mistakes Have You Made Re PA That You\'d Never Want Anyone Else to Make?

Good topic, Cindy. For me it would be thinking that I could manage having an unsafe product in our home (for a special occasion for company, for example) and keep Leah safe from it. I made mistakes when I did this, and realized that I couldn't take the risk. Also, I once gave Leah a snack (Chex Mix) that I had previously read the label on many times and it had been safe. We were at a party and I was too lazy to get up and check the ingredients on that particular bag. When dh did so he discovered that the ingredients had changed and peanut flour was listed. (Fortunately she had no reaction.) Now I really do check ingredients every time.

Mine would be trusting the wait staff in a resturant. At The Melting Pot in AZ, my mom (devoted and aware grandmother) quizzed the wait staff about nuts in a desert (the brownie cookie that comes with the choc. fondue). The answer was it was OK and that was the first thing dd ate when the plate was presented. Then, dd starts complaining about her tougue. I am thinking she burned her tongue on the hot chocolate and am downplaying things in front of my parents so I don't look too obsessive (another thread all together). Then the waitress rushes back and says "I hope that whoever is allergic to nuts didn't eat the brownie - we just looked at the mix and it has ground walnuts in it."

Lets all be aware ourselves and support any programs that get better training to wait staff.

My biggest regret is not knowing about and asking for 504 desination before my daughter started kindergarten. We have worked out a satisfactory Healthcare Plan (and I am pleased with what we have) but in retrospect it would have been better to have requested 504 designation before we had established the personal and close working relationship with school staff. It was after we were well into the meetings, the relationship and trust building that we became aware of the 504. It was too uncomfortable to switch over to the formal 504 process after this very personal process had been underway (and going well) for over a year. We thought it would be interpreted as too threatening and would hurt our relationship with the school.

My advice to any parent who has a child with severe PA is to ask for 504 designation right off the bat, advocate for your child needs, negotiate reasonably and positively, reach a written and SIGNED agreement, and THEN become their most friendly and supportive parent.

Gail

P.S. I would also encourage parents to take photos of their child showing their allergic reaction/symptoms. I have only photo of my DD after a contact reaction at age 3, and of my enormous collection of PA resources, it is by far the one that has the greatest impact on school staff. Now she is 8 and she would be too embarrased if I took a picture. I wish I had taken more when she was younger and didn't mind.

Cindy,

What an excellent thread you started.

What happened in our household completely changed my home from *having peanuts* to absolutely, not even open for discussion, *peanut free.*

My husband and I were getting ready for an evening out to dinner & a movie and my mother was coming over to watch the children. We always kept peanut butter in the house for my non-pa daughter and myself (hypoglycemic...pb helps keep the glucose level) anyway, I decided to make a *quick* dinner for the kids...PB&J for my DD and just jelly for my DS (PA). I fixed up the plates and served them. As I turned around to go back into the kitchen, my son says "No peanuts for Cam." (He was about 2 1/2 maybe just turned 3). As I turned around to *congratulate* him for saying what we always said to him...he was swelling before my eyes. In my haste, I SWAPPED MY CHILDREN'S PLATES and he had taken a bite of the wrong sandwich. The only thing that went through my mind (and still haunts me today) is "I have just killed my own child." My husband grabbed the EpiPen and I grabbed the phone and called 911.

Thank God he was alright but I threw that jar of *Peter Pan* in the trash and it has not been in my house (including any "may contain" in 5 years. I figured if it was *that* easy for me to give him PB accidently and knew what would happen, think of someone else coming in my home and giving it to him who *didn't* know the seriousness of making a mistake like that.

Anyway, that is one mistake I would not wish on anybody. If you keep PB in your house, just please be VERY careful and diligent. Everyone has their own comfort level and I respect that...I would just hate for anyone to make the same mistake I did...it is something I will always live with...even though the outcome was okay.

I had even bought my son the *squeeze* jelly all for himself so we wouldn't accidently contaminate the jelly jar from double dipping with the peanut butter knife. (He didn't need protection from the jelly...he needed protection from Mom) [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Anyway, lesson learned...thank you for letting me share and hopefully enlighten someone so they won't follow in my footsteps.

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Stay Safe.

I just wanted to say that this is a GREAT TOPIC(after reading it I knew this one is a winner and is going to help some see the light)

Anyway, Connie I don't have Peanut Butter in the house BUT if I did after reading your story would through it out!

Gail, I'm right there with you on the 504 plan. We started kindergarten without one and had a lot of problems. I'm so glad we have one now. The only thing is that I based a lot of what needed to be in it on the negative experiences we had in kindergarten. I'm not sure I would have really known enough of the things that could happen if they hadn't actually happened. I suppose having a more sensitive and caring kindergarten teacher would have made a HUGE difference, too.

Also, Connie, your story is very similar to mine. I gave Leah a walnut muffin my friend had brought over and insisted I save for dh, instead of one of the safe ones I had made for her. We made a trip to the emergency room. I never would have thought I could have been so careless. There is no way I would trust an unsafe product in my home now.

Well i really have been trying to think of what I've made mistakes with when it comes to PA. The thing I remember the most is when chris was little and i walked into his Kindergarden class. the teacher was setting the tables with PB and ritz crackers. I told her to get them away from Chris but then i went home after saying good bye to him. To this day i wonder how frightened he was when he saw that. She still gave it to the other children and i am sure he had a very big fear going on that day. This was like the first month of school.
I still think that is a lot of what has made him so timid of people over the years. He has come out of his shell so much and I am so proud of him. Sometimes we talk but i have never mentioned how bad of a mother i felt that day.
I don't think I had enough people to talk with back then because i knew noone with an allergy to nuts. Claire

My daughter has had only one reaction since she's been diagnosed. It wasn't anaphalytic. But... it could have turned anaphalytic. She was all puffy, and her face was all read from her nose on down. We just gave her benadryl and kept her quiet. In hindsight, I should have taken her to our pediatrcian and have her checked over.

Accepting that the gp's explanation that skin prick testing on a young baby would be upsetting and painful for him. That william didnt need an epi-pen because he was to little at under 26 lbs to have one prescribed .
That a baby (under 3 months) who was covered in excema, unable to sleep and had slow weight gain was healthy, as every one kept telling me!
That peanuts are not the only food with the potential to kill my son.
After learning every thing about allergys and spending months feeling angry about the lack of help from the "experts" , when i could of spent the time making sure that THEY LEARNT every thing about allergys.
The waste of time thinking that I was the only mother in my area with a child with multiple allergies!
That if I found it so hard to really believe the truth in front of my eyes , that others like my husband and extended relations would , (as they have never seen him having a reaction)find it hard to believe.
Learning the hard way that food labeled "may contain" does in fact contain enough of a risk to make my son throw up for 40 mins, then feel lucky that that was all it did!!!
That is took so long for me to realise that our home had to be safe for him, that even cooking eggs in the house was enough to cause a reaction. That becoming a nut free zone was harder than i thought and needs constant vilagance.

I think thats enough for now! , what we need next is a thread on what was the best thing you ever did for your child RE PA !!!
sarah

williamsmummy, and, are you going to start that thread? Please? I implore you! It's an excellent question that I would love to see responses to and I don't want to be the one to raise yet another question this week.
I always seem to get on a roll which might be quite irritating to some! LOL! [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]

I was trying to post last night after reading other posts and I really felt that having a
plan in place with the school is one of the really important things that you can do for your child. We don't have 504's in Canada. We do have basic school board policy in Ontario (my province) which ensures our children a "peanut free" classroom.

When Jesse started JK, I thought that this was enough. Jesse has never had a reaction at school (touch wood) and yet I endured so much difficulty dealing with the school and it's administration mostly (not his wonderful JK/SK teacher) that it really became necessary for us to develop a personalized school plan for Jesse.

I didn't do this myself. Another PA.com member, PeanutTrace, used her daughter's and wrote one up for Jesse. I just recently did the same thing for another PA parent also in Ontario so that she has something concrete to present to her son's relatively new school for this Fall.

I just think that the paperwork, be it a 504, or, in Canadian cases, an individualized school plan (which does adhere, point-by-point to basic school board policy) is important to have. I've found that although this doesn't make life *perfect* as far as dealing with the school, you actually have a document to reference to when the school does make even the smallest error (which is okay if they do - they're human).
I've found this past year that I just really like having the ability (or right) to say, "okay, this happened, so I'd like you to review Jesse's personalized school plan and point X in particular".

I also think that school plans in place with the school help the school administration and other staff recognize that they are dealing with parents who know their child's allergy and know what needs to be put into place to ensure their child's safety. We aren't just going in there and asking for things that some may consider outlandish.

Now, having said that, I also know people with excellent 504 plans who have had very difficult school years this past school year.
If the teacher isn't willing to work with you, you've almost had it, but again, you have the administration at least aware, if not on your side and you can take it higher up.

I still had little things crop up and it would have been more than once a month probably that were against Jesse's school plan. However, they were all things that I was able to work out with the school, and again, I believe, because I had the school plan in place.

This is totally different than what I had in place when Jesse first started school. I accepted that yes, he had the *right* to a "peanut free" classroom and I worked very closely with his JK teacher (who was wonderful). But again, difficulties arose elsewhere and finally, for Grade One, I realized that I needed something more firm or binding in place with the school. Whether or not it lessens stress when something does go amiss, I'm not clear, but at least it's a document in place with the school.

I had just wanted to add my two cents in that yes, make sure you have a 504 Plan or personalized/individualized school plan in place for your child. It is a major help. And I also believe, for the most part, that most of my PA difficulties and challenges have come from dealing with the schools. It's because that's the only place Jesse really goes without me, the place where other grown-up people substitute for me. That's why I feel a plan is important.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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The biggest mistake we made was not using the epi pen when we should have. We were just sitting down in a restaurant, when my son (PA/TNA) who was only 2 at the time, grabbed a piece of flatbread out of a bread basket on the table and put it in his mouth. Within 10 seconds he started vomiting - lots.
My husband and I strugged to get him out of his high chair, while trying to figure out if he was choking or having a reaction. When he finally stopped throwing up, we realized he was trying to get air in, not the bread out or down, and that he had just had a reaction. Once he got it out of his system, he seemed fine. No hives or swelling.
We cleaned up and went home - very upset. In retrospect, I know that we should have used the epi pen and called 911. We were so shaken we didn't even think to take him to an ER to have him checked out.
I wouldn't hesistate to use the epi pen now. Our GP explained that it wouldn't have worsened the situation (if he'd been choking) - which I was worried about.
Good topic!

mae, welcome! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

That was also our biggest mistake. When Jesse had his second anaphylactic reaction, we didn't administer the Epi-pen until he had every symptom of anaphylaxis except passing out. He almost died.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Another "mistake" I made was assuming that the school would take appropriate action(s)after I educated them about our child's PA. It took me a L-O-N-G time to accept that the only person who would make sure that my dd was safe at school was me... even with an excellent and cooperative staff and a written IHP in place. It's exhausting and I still get frustrated, but overall I've accepted this as the reality of my situation and my role in it.

Gail

Gail, I really think you've hit the nail on the head as far as alleviating stress and frustation - acceptance of our situation. I believe I've now recognized that there is always going to be something that comes up at Jesse's school that doesn't adhere to his school plan (my biggest thing is my being the food monitor for the whole school). I spent the first two years of him being in school banging my head against what I felt was a brick wall. I've finally stopped doing that, to the best of my abilities.

I really do think that until we accept that we are going to run into different situations that can be difficult or scary, we can feel constantly stressed and frustrated.

Acceptance. I feel you've really got that right.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Hi Cindy! I appreciated your response.

Yes, there WILL always be things that come up at school, and OFTEN it seems! It was a dilemna for me for years because I, on the one hand, had a great deal of respect for the school staff and knew they were good, smart, and honorable in wanting to do "the right thing". They were generous with their time with me, did lots of staff training, etc. etc. But I felt I was going crazy and often angry that they wouldn't catch things. I was constantly reacting to the multiple things that were falling through the cracks. Our IHP helped by proactively addressing many of the issues, but the bottom line is that it is really up to the parent to know what is going on at school at all times. I guess I believed that at some point I wouldn't need to be very involved at school, that a 504/IHP or someone would somehow take the burden off of me...rescue me. Know what I me? But it was hard for me to learn that this is my absolute job, my duty as the parent, and that it is without respite.

I know that probably sounds depressing, but my acceptance of this actually makes it feel less so. Acceptance does lessen the stress.

Gail [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

This sounds incredibly irresponsible and boneheaded now, but I began using soybean butter at home last spring as a PB substitute for my PA son. I then packed it in his school lunch a few times when we were low on groceries. Everyone in this class knows about his PA and he explained to them about the soybean butter. So far, so good, right?

But weeks later a classmate put his peanut butter sandwich in my son's lunchbox when he wasn't looking as a "joke". My son thought it was his soybean butter sandwich and nearly ate it. Crisis was averted this time (narrowly), but I will NEVER pack anything in his lunch box again that could be confused with peanut butter or peanuts. I never dreamed this scenario would happen!

My big mistake was believing that imitation (soy) ice cream that did not state was on shared equipment with peanuts was not a "may contain". I have since checked on all the imitation ice creams (Rice Dream, Toffuti Cuties, etc.), and they are ALL on shared equipment with peanuts. So without knowing it, I was giving my daughter may contains for years. I would warn everyone not to give their pa child any store bought real or imitation ice cream without checking with the company to see if it is on shared equipment. If it is, it is really a may contain and not stated. The soy ice cream I gave was also on shared equipment with milk and not stated. Hard to see the logic in that since most people are buying it because of milk allergy.

[This message has been edited by Carefulmom (edited July 17, 2002).]

So far, my biggest mistake, which I much regret, was not believing he was allergic.... Way back when he was about 18 months old I gave him a bite of a peanut butter cup.. he threw up and went purple, and had a horse throat for the rest of the night but otherwise was ok... Not even thinking it could be a PA, I continued eating peanut butter, and peanuts around him... I never gave him anymore peanut products, cause it was always in the back of my mind, but my wife and I continued having peanut butter every morning etc... Man are we lucky.... Now were are strict and don't even allow "may contain traces" products in the house, nor to be eaten by us out of the house...

*ALWAYS listen to that inner voice (not to well meaning family members who say... "oh, he's fine")!.

*NEVER hesitate to give the epi-pen

*ALWAYS call an 911, never try to drive to hospital yourself!

Katiee

JanetE., how old is your son? Soybutter had been posted on this website as a good alternative to pb. When my son started school where we live now, I realized I actually lived in a place where I could find soy butter if I wanted to (the previous town we lived in I couldn't). I was going to suggest to the school that we have a taste testing thing and offer it as an alternative to non-PA parents for the peanut free classroom.

I spoke with my DH about this and his response was that he felt it would be confusing to people and that you may not be able to tell the difference. Now, I've never seen soy butter so I have no idea. Sometimes, my DH surprises me at how enlightened or how he can look at a situation totally different than I can. Me, I was trying to appease people and think of an almost equal substitute, but he immediately thought about the possible dangers of the substitution. And your post proved it!

However, I wouldn't beat myself up about it!
Seriously! It has been posted on this website as an alternative to pb and I do know a few members that do use it. Maybe it's something they just use in their homes and don't send to the school, I don't know.

What I feel absolutely terrible (and there has to be a stronger word) about is that some other child would actually do this to your son. I have spent most of this year with my Jesse being bullied, but interestingly enough, it hasn't had to do with his allergy.

Are you able to speak with the class at the beginning of the school year and let them know how serious the allergy is? What that child did, perhaps he does think is a joke, but it's not. He needs to be educated. It also sounds as though your son doesn't have a "peanut free" classroom or peanut free table in the cafeteria. Are you able to have one implemented?

See, again, I wouldn't totally blame yourself.

yuckypeanutdad, welcome! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I'd also like to *tell* you not to be too hard on yourself. My husband was in denial until my son had his second anaphylactic reaction and almost died.
You've "got it" now. That's what matters.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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Quote:Originally posted by Cindy Spowart Cook:
[b]
yuckypeanutdad, welcome! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I'd also like to *tell* you not to be too hard on yourself. My husband was in denial until my son had his second anaphylactic reaction and almost died.
You've "got it" now. That's what matters.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[/b]

Thats a great way to look at it... Thanks!

Cindy and William's Mummy what great threads !

The biggest mistake that we made were not reseraching enough about PA.

Before buying a car or a camera, I research everything on the web. But before feeding my baby, I did not find out about the foods that I should have avoided until she grew older.

After finding out she was PB, we mentioned it to our pediatrician. Although the ped said it was a serious allergy she neither gave us anymore info nor prescribed the epipen. And we were happy with not giving her any obvious peanut foods and never researched anything until another accidental exposure at a party (thank god, just hives, but still went to the ER and the ER doctor (bless him) gave us a 15 minute lecture on PA and its potential severity.

Stay safe everybody.

Doing a search, just felt like re-raising, not clear why.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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"That was Polanski. Nicholson got his nose cut."

Biggest screw up I ever did was taking a bite of a cookie I wasn't sure of, when I had a cold and couldn't rely on my sense of smell or taste as a warning. I didn't realize it was a pb cookie, not a sugar cookie, until my mouth and throat started swelling up. Dumb, dumb move that no one should ever make.

My DH brought bakery cookies into the house for Hanukkah. Our son has grown up on these cookies. DS asked should he have one, I was thinking calories, DS was thinking peanuts and DH was thinking Holiday treat.

I said it's up to you still thinking calories.

DH said go ahead it's Hanukkah.

DS took one bite and WHAM. Epi pen, Benadryl, Off to the ER for about 7 hours and sick for days after that.

DS was 15 and this was his second big reaction, the first being one year earlier. He was diagnosed at age 5 from routine allergy testing.

Somehow I think it was good for all of us because we just saw how sensitive DS was and how quickly a reaction happens and how really horrible this PA is.

But we also got to see what a wonderfully well oiled machine we are and how we act in crisis situations.

I took DS to the hospital (another mistake, should have called 911) and DH stayed home with his mother. I kept in touch with DH the whole time and honestly was more worried about him than I was about DS.

DH was beating himself up for bringing the cookies into the house and encouraging DS to eat one. He was a mess. I've never heard him that upset or sad.

All in all DS did fine after getting over the effects of all of the drugs he had in the ER and we all learned to respect his PA much much more than ever before.

And the cookie? It was not a peanut cookie but had sat in the same display case as the peanut cookies. The bakery now labels their display cases for peanut and we stay away.

Peg

Boy, this could be a long list!
-Not going to the doctor for my DD's reactions just because they weren't helpful the 1st time and had no comment on the matter at well-child checks
-Not researching PA (like someone else said, I research everything else, why the lapse here?)
-Putting a peanut butter-covered knife into the jelly jar
-Thinking "may contain" and "processed on/in" labels were for people with terribly serious allergies, and therefore ignoring them
-Thinking it was okay to take chances as long as I had Benadryl with DD
-Trying to talk DD out of having a reaction ("have a drink of water, you probably just don't like the way that feels in your mouth" - ya think?)
-Waiting to see if the reaction gets serious before getting medical attention
-Going to our regular urgent care clinic instead of the nearest emergency room when DD was wheezing and coughing
-Not using the Epi-Pen
-Letting DD be around people eating peanut butter and letting her eat off of dishes washed with peanut butter dishes
-Not speaking up about her allergy and asking family members that peanut food not be served while she's there

We're lucky she's still alive. At least we've finally gotten an education and she's given us lots of chances to find out how to be careful without most reactions being serious.

Just two:

Because our "debut," if you will, was anaphylaxis that nearly killed our daughter, we were appropriately frightened to start with. We didn't live in denial very much. We really did do a lot of things right. I have to remind myself of that.

-- NOT taking anaphylaxis as seriously as we should. (Out of not wanting to frighten our daughter?? I don't even know... clearly she was already terrified if she was screaming like that, so I don't know what difference it would have made for us to be visibly upset....) We also didn't apply pressure to [i]hospital staff[/i] who didn't check the appropriate vital signs... like BP. You can still die with O2 sats that are normal. [img]http://uumor.pair.com/nutalle2/peanutallergy/rolleyes.gif[/img] Allergist later instructed us to make as much fuss as we need to in order to get appropriate care... work it out with law enforcement later. (I think he was kidding about that part.)

--Not asking "pushy" or "unpleasant" questions becuase I didn't [i]really[/i] want to know the answers. It took several years worth of trace and ultratrace exposures from shared lines before I finally [i]got this[/i]. I may come across as rude or even abrasive now, but I trust my instincts and I know knowledge is POWER.

These were both, coincidentally, very big issues for my DH and I emotionally. We don't want to be the resident medical experts when we go to the EMERGENCY ROOM, for heaven's sakes. That is very frightening. Both of us are classic authority pleasers, too, which makes talking back to someone in a uniform almost impossible.

We also didn't want to have to admit that most of the "control" that we think we can exert over food at home is illusory and depends upon events and people so far removed from us.... well. We're major control freaks and this was very difficult to let go of. But knowledge really is power.

Up to a point. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] We also went through a stage where we wanted "Just the facts, ma'am..." but ALL of them. Major data collection mode. And what it all meant.

*sigh* Aye, there's the rub, though. Much of the data you can collect with respect to FA is open to various interpretations. Even the experts don't agree on a lot of things. Then we realized that data was only as good as how we plan to use it. So now we ask, what will we do about this data? If the answer is "nothing" then it isn't worth doing.

[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[This message has been edited by Corvallis Mom (edited February 23, 2006).]

Re peanut allergy specific? Nothing.

Jason

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[b]* Obsessed * [/b]

Biggest mistake was not using the anapen when we should have and looking back, it was so obvious that it was needed. DD was completely hoarse after having vomited. At the time, our reaction was so slow - I just remember feeling complete panic and helplessness. Next time I won't hesitate for a second - I've learnt my lesson hopefully.

Not making a fuss. People pleasing. I spent my whole life trying to do both when most people around me never cared what they said or did.

When I had children I quickly realized what it meant to be an advocate. If I do not stand up for them when they are small and defenseless then who will?

It was so emotionally freeing for me. I could rightly make any kind of fuss I wanted to. Not rudely or out of context but boy did I fuss.

The three times we have been in the ER with anaphylaxis I demanded we be admitted past the locked doors IMMEDIATELY. It worked well two times but the last time security tried to surround me just as the doors were opening and we got help.

I would have welcomed security because any attention is good attention when you have a child with potential anaphylaxis lingering in a waiting room next to a candy machine that serves Reeses anythings!

I throw that word "anaphylaxis" around to anyone who will listen. Also "shock." If they do not understand I say "DEAD" and they listen.

People respect me and I don't think I have too many that think I'm nuts except for my nurse friend who rolls her eyes if she hears PA. Remember she is the one who let her two son's ear drums perforate with ear infections and still brought them to school instead of to the doctor.
She can roll her eyes any day she wants because that sort of person I DO NOT have to please.

I taught my son all of the above too. So when push comes to shove and he has to handle an anaphylactic reaction alone he can speak up for himself too.

I have an acquaintance who makes a fuss too but she is different. She makes a fuss about everything and people do not listen to her any more because she is plain crazy.

We can make noise and get others to listen to us and still maintain their respect for us. It works I've done it.

I think anyone who knew me in my early years would not recognize who I am today.

peg

Quote:Originally posted by Peg541:
[b]She can roll her eyes any day she wants because that sort of person I DO NOT have to please.[/b]

Peg, this has become my adopted motto these days. I have always considered what everyone else would want & think. But, they are all not responsible for my kids. It is something that I have come to understand at the ripe old age of 28. I want to look back & know that I gave my kids the best guidance, but it was my guidance. It is especially rewarding when at only 5 my DS asked the waitress the other night if the bread had his allergens. It is something I have read about on here & personally saw first hand with Rae's DD, but to see my baby ask & realize he couldn't have the bread & was just fine with it that I know that I am doing what I need to do. I have made many mistakes regarding PA. I would like to say that I have learned from them. But I know that I am doing the best I can do & putting my faith & trust in my God to guide me.

Take care,
mandi

I just discovered this website, and it's so great to find people who are dealing with the same issues I am. I don't have kids--I'm the one with the allergy to soy & peanuts, and I developed it in my 20's. I'd never been allergic to anything, airborne or food, and I couldn't figure out why I was suddenly growing hives all over my body. This was happening at least once a week, but I actually didn't think it was due to allergies. My first episode of anaphylaxis happened while I was driving! I had a choice of stopping at a medical clinic that was nearby, but of course, I chose to drive home instead! Thank God I had called my office before things got really bad, and my guardian angel there called my husband. After that, we decided it was time to get tested. When the RAST test came back with the highest possible score for soy & peanuts, I still didn't get it. I remember saying "well, I don't need Chinese food anyway", and the doctor telling me that it wasn't going to be that easy. I thought I was being vigilant, but soy is hidden in so many thing and I didn't know all of the names for it. Of course, I was also having at least one reaction a week, which varied from hives to other unpleasant things that you all know about but I don't want to mention, to anaphylaxis. Then I had a really severe reaction to a fruit juice drink (I was so swelled that the ER staff used me for show & tell). I had read the ingredients and didn't see anything. I took the bottle to my allergist, and he explained that soy & peanuts aren't always called soy & peanuts. So, I bought "Food Lover's Companion", and I can't believe how many times I've needed it.

Of course, there's the issue of eating out and cross contamination, and the time my co-worker ate peanut butter and I ended up in the ER. Now I carry printed cards that I hand to the waiter, and all peanut & soy products are banned from my house & office.

So, I guess the point of this long post is that if it's hard for me as an adult, I can't imagine what the little ones go thru. I'm only responsible for myself and I still mess up, so my heart goes out to all you parents dealing with this every minute of the day.

Not to mention all those like the nurse that rolled her eyes. I think that's due to food allergies being the "disease of the day" for a while.

OK, time to stop! For all those who read this all the way to the end--I'll take any suggestions you have!

Bumping up for new members

My mistake was eating grapes and pretzils that were on the same table with a bowl of peanuts. People touching peanuts, touching grapes and pretzils. That was how I learned about cross contamination. I became allergic to peanuts when I was 26 years old. Took a long time to figure out what was going on with my symptoms because they were different then the usual symptoms and have gotten worse with each exposure.

Also always trust your instincts.

Quote:Originally posted by Peg541:
[b]
If I do not stand up for them when they are small and defenseless then who will? . . .

I throw that word "anaphylaxis" around to anyone who will listen. Also "shock." If they do not understand I say "DEAD" and they listen. . . .

She can roll her eyes any day she wants because that sort of person I DO NOT have to please. . . . [/b]

<>

Even after 6+ years, I need to remind myself of the best, most effective way to advocate and ALSO what type of response will just shut down the other person & any reception . . .

Peg, [i] thank you [/i] for earning any and all gray hairs you *might* have [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] & for blazing the way for so very many of us.

[b] [i] Thank you. [/i] [/b]

~

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~Eli[b]Z[/b]abeth,
Mother to 2:
DD age 5, NKA, treated as though PA/TNA
DS age 8, PA, possible TNA
(PA diagnosed & ana reaction 1999)
Member here since 2000

What a great topic!

After reading the stories of throwing out the PA I just can't do that (yet). My 11yr old only eats PB he is a very picky eater. That is his only protien. My 4yr old is a 48 on cap test. We are very careful and my older boy knows to wash his hands. However, if 4yr old does have a reaction I know that is when I will change my mind about having PB in the house. Right now we are being VERY CAREFUL!

Trusting the professionals and not doing my own research. I know it sounds awful but they didn't make a big deal out of it so I really didn't think it was a big deal. I didn't know that he might be allergic to more foods. I didn't know about cross contamination or residue. I didn't know that there were other names for foods. I didn't know I could give benadryl. I didn't have an epipen or even know what one was. I was told he might have hives on occasion and if he stops breathing to call an ambulance. On the one occasion I should have used an epipen, given benadryl, and called 911 I just kept telling myself he's still breathing so he's ok. It wasn't a new food and it wasn't one he had been tested for. That's when I decided that I needed to teach myself.
Not to people please. It's hard for me to speak up sometimes but I've had to learn that my son's life is more important than whether so and so thinks I'm crazy or not.

A LOT of our mistakes were made when my son was first diagnosed, over 9 years ago...just not knowing enough, keeping PB in the house for us, not even knowing about may contain food at that time...Now we are old pros at this, but there are still things I learn all of the time, some, thanks to this website. This website gave me the power I needed to learn, and educate myself, and my kids..We are a household without any may contains, period. Thanks for the idea!

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Amy (mom of 2)
Son PA/TNA
Daughter PA/TNA

Hi everyone! I was doing an unrelated search and stumbled into this post, and had a question i was hoping someone could answer.

many of you said that you would never drive to er, ALWAYS call 911, i was wondering why this is? is it just because the ambulance can get you there faster, or another reason? In my case, the fire station (obviously where the ambulances dispatch from) is located further away than the closest ER, so it would actually be faster and easier to get myself to the ER before the ambulance would even be able to arrive.

my 2 cents on the rest of the subject:

no matter how careful you are (or think you are), peanuts in a home with pa children is like playing russian roulette. my sons 1st (and only, knock on wood) ana reaction was at age 3 months, when i ate a pb cup (knowing of allergy), washed my hands 2x with different soaps and scalding hot water, and then 20 min later made him a bottle, with my finger over the nipple to shake. my 12lb (*maybe* - he was teeny!) baby got prescribed an epi pen at the ER that same day. having pn in the house is NOT SAFE under ANY circumstance.

and also his 1st reaction, at 2 months was just atopic - he got hives bc i ate something i didnt realize had peanut oil in it. peanuts are everywhere, be diligent reading labels!

Getting to the ER faster is one reason...but also, ambulances are equipped with life saving equipment and medications that can be adminstered enroute should the reaction become more severe prior to arriving at the hospital. For me personally, if my child were having a severe reaction I don't know if I would be in the right state of mind to drive him myself to the hospital...we would probably get to the hospital in the same amount of time from our house if we drove vs calling 911, but the possibility of a more severe reaction occurring enroute is not a chance I'd want to take. We have (thankfully) never had to do this, but the protocol my son's allergist gave us was to administer the epipen first, then immediately call 911 and state that our child is having an anaphylactic reaction, that epipen was administered and we that we need emergency personnel. I don't know if that answers your question or not, but I hope it helps.

PLEASE correct me if im wrong, but i *thought* that somewhere i read that ambulances/EMTs did not have epi that they could give. the reason i state this is because i read a post on here having to do with EMTs were finally able to administer your OWN epi pen to you (i guess they werent allowed to before?)... i'll have to do a search on this though and see if i can find that thread. interesting, and thanks for the answer! :)

I think you are correct. my son's first (and only -- thank Jesus)reaction was about a year and a half ago, and while it wasn't as severe as some have had to deal with, I called 911 nontheless b/c at that time we thought he might also be an asthma kid, and I assumed the worst could and would happen (it was also 10:30 p.m. at night, and raining, and I didn't want to chance the drive). EMTs arrived and noted wheezing upon checking him with a stethescope. they administered albuterol with a nebulizer en route to the hospital -- never any epinepherine in any form. at the hospital, he got benedryl and then steroids. So...I assume they do not come ready with Spi -- I WONDER WHY??? At least now we have our own.

Originally Posted By: Peg541Not making a fuss. People pleasing. I spent my whole life trying to do both when most people around me never cared what they said or did.

YES. THIS.

[b]Putting other people's convenience before my own safety.[/b] Being too worried about causing a fuss or attracting attention to speak up for myself. Letting my parents' insistence that I was "just picky" keep me from addressing severe food allergies for twenty years (to be fair, this was before food allergies were nearly so well-reported or understood as they are today--they were generally great parents otherwise). Not finding a doctor who I was totally comfortable with, wo was willing to answer my questions and help me figure out which questions I needed to be asking.

-Offering my PA friend a mini Caramilk bar on Halloween, after Trick Or Eat, withour realizing that Caramilk is a "may contain." Luckily, she didn't take it.

-Hugging my friend after having eaten a Power Bar, and not washed my hands....I was taken off guard, it was the middle of reading week, and she'd gotten back from Florida earlier than I'd expected, and I was happy to see her. Luckily, she's not extremely contact sensitive (meaning, I'd have had to have had PB visibly smeared on my person to hurt her), so she was okay.

Umm.....that's about it right now.....but I know it must be much harder if it's your child who has a food allergy.

We found out on my birthday that we had peanut & tree nut allergies with my Daughter. So I bought a chocolate chip cookie cake because it was the only cake at the Wal-Mart Bakery that was not labeled as made in a facility that processes nuts. My kids happily ate the cake and then my daughter got hives on her face and chest. I have since learned that I should not purchase any baked goods from bakeries because of the risk of cross contamintaion. I have also found that some chocolate chips are made on equipment that process nuts and or tree nuts.

kandebuttahfly - We have been instructed to use the EPI pen and call 911 and to let them know that an epi pen has been administered. In Pennsylvania it is not currently required that all ambulances carry epi pens (I believe there is a bill being proposed). I think the reasoning for the ambulance is because the paramedics are better equipped to deal with anaphylaxis then a frantic parent racing to the ER.

Thank you thank you thank you! I'm a new member, and feeling very scared and overwhelmed! This thread has taught me a lot and also comforted me A LOT! It's making me feel a heck of a lot better!

bump

What is on the cards you hand to the waiter?

Thanks

I've heard these waiter cards mentioned too....I'm with Gege...what is on them and where do you get them? Anyone?

There is a sample of one at the link below. I use these when I don't have the opportunity to call the restaurant ahead of time.

[url="http://www.foodallergyinitiative.org/section_home.cfm?section_id=5"]http://www.foodallergyinitiative.org/section_home.cfm?section_id=5[/url]