My Intro: 2 near misses in 2 DAYS!

Posted on: Sat, 05/10/2003 - 3:37pm
Ms.Belinda's picture
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Joined: 05/11/2003 - 09:00

Hi there,
I have a three year-old son who was diagnosed as SEVERELY PA by our pediatrician (Dr. said they rate on 1-4 scale, but he's a 5! V scary) in August 2002. I've had a "down" two days because of his PA and how stressful it is, and by posting on this board, I'm just looking for other parents of PA kids for support. I'm so sick of feeling (or being made to feel) like The Crazy Overanxious Mother. Yesterday we took our son to a birthday party. I had told the mother about his PA, and tried to stress how important it is, blah blah blah, but lo and behold - all the chips had peanut products in them! So these kids are running around, touching balloons, touching each other with peanut hands, and I'm racing after him, making sure he doesn't eat anything or touch anything, and at one point, someone actually handed him some chips, so we had to take them out of his hand and elicit a tantrum. It sucked so bad, we just gave up and took him home. And then today, in the nursery at church, after our explicit instructions, a little boy was sitting there eating a PB sandwich right beside our son! So I took him out, and felt like The Overanxious Mother again. I know I shouldn't care what other people think, but I'm finding it hard to convey to people just how serious this is. How do I do it politely? We've gotten used to just staying home - he doesn't go to playgroup or anything, and I get so frightened, because even people I think we can trust to understand, still don't! I'm in New Zealand (Canadian with husband going to grad school here), and it doesn't seem like The Peanut Message has penetrated here at all. So anyway, I'm finding this stressful. Any ideas, advice, or encouragement would be greatly GREATLY appreciated.

Posted on: Sat, 05/10/2003 - 10:24pm
LaurensMom's picture
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Joined: 05/23/2001 - 09:00

Ms. Belinda,
Welcome and sorry to hear you are having such difficulties.
We ran into the same types of problems. No one took us seriously. We were over-reacting when we told her in front of them that she couldn't have something. The weird thing was, people *were* concerned *but* they didn't understand all that needed to be done. When an unsafe situation presented itself, it seemed they went on the defensive and projected that into me being overprotective rahter than them being 'in the wrong' for having peanuts nearby. I say it this way because I know these people love Lauren and it is the only way I can explain their reaction.
One thing I have learned over the years is that most people live inside a circle and most don't expand that circle just for the sake of growth. And, PA happens to be outside this circle of most people. They just aren't aware of the dangers. On the other hand, I honestly believe most people are compassionate. I think the bridge between the two is awareness.
What turned our world around regarding PA was we had a meeting with all family and parents of friends of Lauren's with whom she spends a great deal of time. We lured everyone to our house saying we needed to talk with them and bribed them with brunch and bagels! We presented to them documented facts on what PA was, how it works, fatality statistics, etc. By the end of each "presentation", everyone was in tears and very supportive. We also told them that if a situation presented itself that was unsafe, regardless of what kind of event it was, we would leave. We also told them that whatever they needed of us to help them help us, we would follow through on.
In the community, like at school, we took a chance and trusted in the compassion of the school officials and it paid off. We had a several meetings/training groups. All we did was to present them with facts...we removed all the emotion from the presentation. From that, they have turned around and made a very safe environment for her and have encouraged parents and teachers to do the same.
Hope that you find something in this helpful. I know it is stressful but it will get easier.
Peace and stay safe,
Andrea

Posted on: Sat, 05/10/2003 - 11:44pm
maddiesmom's picture
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Joined: 12/20/1999 - 09:00

First of all....Happy Mother's Day to you Ms. Belinda! You are doing an excellent job as a mother and I want to commend you and honor you on this Mother's Day.
Thank you for allowing yourself the opprotunity to vent, it sometimes helps to put it down into words the frustration we all experience when we are trying to keep our PA children safe.
I too, have experienced the same issues when dealing with people and situations with my almost 5 year old PA daughter. I have found that if I surround myself only with those people that I can truly trust to understand our situation, that I don't encounter the daily anxiety of PA allergies. It's not that I am having my daughter live in a "bubble", but I only go to playgroups with friends that I KNOW won't serve something with nuts. If I am confronted with any food situation-we excuse ouselves and explain why we are leaving. I have found that after leaving a few times, that people learn and if they really want to hang out with us they will make accomodations. Instead of having a BUNCH of friends that we can "pop" over to have lunch with or play with, we have 10 wonderful understanding friends who always have safe "Madeline snacks" in the cupboard for when we come over. I have a great comfort zone with these Mother's and that helps with the dealing of PA.
I know it really truly SUCKS....it limits you somewhat in social environments but in the long run it is worth it. We have had to keep Madeline in church with us many times because the Sunday school people just don't "get it". I would much rather have her safe next to me, then worry through the whole sermon about if she is safe back there.
Once again, you are a wonderful loving Mother that is trying to keep your child safe. Please know that we all have felt like you are feeling and we sympathize with you. I hope you have a wonderful day today!
Shandra
Mom to Madeline-almost 5, and Grant-13months

Posted on: Sun, 05/11/2003 - 12:53am
angelahensley's picture
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Joined: 05/06/2003 - 09:00

Hi and welcome!
You aren't being overprotective... think of it the way my daughter's allergist said, "if you don't carry an epipen with her at all times and help keep her away from potentially harmful situations re: peanut exposure, it can be considered child abuse."
That got the attention of all family and friends. You know your child has a life-threatening condition, you protecting that child can be viewed as nothing other than being a great parent.
I don't take my dd to any parties where I don't feel comfortable enough w/ the host to say "will you be able to offer a peanut-free selection of foods?"
If it were my friend's kids w/ the allergy, I'd happily comply. So, this may also show you who your friends are LOL...
And as another poster said, it's not that people don't care, they just don't understand all of the facts. My neighbor and great friend has known of dd's p/a since she was diagnosed, she ate pb ice cream in front of her the other day... out of ignorance. I spoke to her, she said she thought as long as dd didn't eat it, she's safe.
So, education is the key and I hope your friends will take action and allow you and your baby some relaxing play time.
Angela

Posted on: Sun, 05/11/2003 - 5:27am
river's picture
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Joined: 07/15/1999 - 09:00

Hi and welcome,
I just posted some information about a safe cookie company in New Zealand on the media board.
Try not to feel overwhelmed. It is very difficult at first and it can take a long time for you and your family to adjust to the lifestyle changes. It doesn't happen overnight.
Here's a link to a site called Allergy New Zealand. I just found it so I'm not sure how helpful it is:
[url="http://www.allergy.org.nz/"]http://www.allergy.org.nz/[/url]
It sounds like you really tried to make sure that the birthday party would be safe for your son. Unfortunately, people who do not have to deal with PA often take a long time to understand. You were right to pack it in and take your son home. That birthday party was a high risk environment for him.
Check around you community for other parents of PA children. You may be surprised to find that you are far from alone. It certainly seems that New Zealand is another one of the hot spots for PA.
Definitely return here for information and when you need to unload. This is one place where people do understand just what you are going through.

Posted on: Sun, 05/11/2003 - 8:09am
Ms.Belinda's picture
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Joined: 05/11/2003 - 09:00

Oh, thank you all! I read your replies with a few tears in my eyes - I am a good mother! It's so easy to doubt myself in this - I can't ask my own mother how she did it, like I can with everything else, because this is truly unprecedented in our family, and most families. This is what makes the internet so good - the numbers of people like me feel much greater. And that comment about not keeping my darling safe from peanuts being akin to child abuse! That gave me power! So thanks again. Where's a good place to keep posting? You guys are all so wonderful - I need to keep picking your brains!
Love
Belinda

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