pJesse was diagnosed with PA at 18 months of age. We were immediately given an Epi-pen Jr. but no other information. This was about three years before we had a computer. I did contact AAIA and got some information re PA, but certainly not as much as I have now almost five years later./p
pWhat mistakes did I make while learning about PA that I would never want another person learning to make? Well...../p
pWe didn't allow Jesse to eat peanut products or "may contains". However, we still had peanut products and "may contains" in our home. I remember receiving a bag of peanuts from our BIL from Christmas and they were in our sideboard. I never knew about residue or proper washing after consuming a peanut product (although for me, consumption of them wasn't a big deal)./p
pI remember the first summer I moved to Stayner, before Jesse had his first anaphylactic reaction. I had told the neighbours that Jesse had PA but when the ice cream truck came they still purchased me a drumstick coated in peanuts, which I did eat.br /
Jesse didn't have any. But, I didn't clean up afterwards. To-day, I wouldn't even eat a peanut product./p
pI didn't know about potential cross-contamination with tree nuts and Jesse still ate tree nuts and sunflower seeds. We were very fortunate in that they weren't cross-contaminated and he didn't have a reaction./p
pWhen Jesse had his second (and last, touch wood) anaphylactic reaction, we didn't know that the Epi-pen only *buys* you 20 minutes to get to the hospital. We didn't know that you call 911 immediately. None of our doctors had ever told us and we simply didn't know. We also didn't know that we should be carrying two Epi-pens instead of one./p
pDenial played a big part in our family dynamics as my DH was in heavy duty denial about Jesse's PA and the seriousness of it.br /
So, as I became more educated, he thought that perhaps I was going overboard. Now, since seeing his son almost die, he's as serious about the allergy as I am./p
pI think I reached my current comfort zone after Jesse had his first anaphylactic reaction. I wish (20/20 hindsight is a wonderful thing) that I had reached it BEFORE he had an anaphylactic reaction. I believe my current comfort zone isn't overboard and accommodates our family and *real* life well./p
pI just wanted to post about the specific mistakes I remember making so that perhaps others, especially ones new to PA, wouldn't make the same ones./p
pI'd also be interested in hearing from anyone else that feels they have made mistakes that they would like people to know about. I know this is a tough thing to share because you can look like BAD MOMMY. I, myself, don't mind looking like BAD MOMMY if it saves someone else going through what we went through to finally learn all we possibly could about PA and protect our son to the best of his ability./p
pMany thanks and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]/p
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What Mistakes Have You Made Re PA That You\'d Never Want Anyone Else to Make?
Posted on: Thu, 07/11/2002 - 6:19am
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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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