When family doesn\'t understand.

Posted on: Mon, 10/25/1999 - 3:51am
PattyR's picture
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Joined: 04/12/2002 - 09:00

I had to go to a wedding out of town and trusted a family member to watch my children including my PA son. I thought I had made it very clear to this person. I left food that was safe along with a list of restaurants that were safe. I thought as long as I did that I could rest easy about being away. I wasn't home 5 minutes when I saw an eaten canister of Pizza Flavored Pringles on the counter. Well they are made with peanut oil! He had of course eaten them.
Thank God there was no reaction but this person bought them and fed them to him without reading the label! She said that my 5 year old son had told her they had had them before so she thought they were OK. Then she just brushed off my concern about it.
I am so discouraged. I have been so hesitant to go away and leave him in someone elses care and this just reinforces that fear. She also took him to a fair and let him eat food from there without asking about ingredients. I really thought that this person wouldn't do that and I really just don't understand it. It will be a long time before I leave him again. He is 8 now so I guess that means 10 years from now!

Posted on: Mon, 10/25/1999 - 5:33am
Hope's picture
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Joined: 07/29/1999 - 09:00

I'm so sorry your evening out was spoiled in such a way. I know how hard it is to trust someone with your PA child, and then to realize they either don't understand or don't take it seriously makes it worse.
I have a very hard time leaving my daughter with anyone. My parents think I am overreacting with her PA allergy and are just not careful about what they offer her. They are big peanut eaters and there are always bowls of them all over the house! I know they think I am being mean, but I don't allow her there without me ever!
My husband thinks we need to get out and enjoy ourselves, but understands my reluctance to leave her with anyone...so my solution is to have my sister come to my house and look after her. I know there is nothing in my house she can't have and I don't allow my sister to bring treats in. As supportive as my sister has been about this, I don't feel she understands the serious ramifications of my daughter's allergy. She has practiced with the epi-pen etc. but when I am out I can't seem to relax...I am just waiting for the cell phone to ring. It has almost gotten to the point where I would rather stay home than go through the anxiety of going out and having fun!?
I will pass on to you what my husband always tells me....don't feel guilty..not about wanting some time to yourself or wanting to go out or leaving her with someone. Do your best to ensure there won't be any exposures (which you certainly did Patty) and try to relax!!!
Thanks to God that your child didn't have a reaction...but doesn't that make this allergy all the more confusing?
Take care Patty...stay safe

Posted on: Mon, 10/25/1999 - 10:05am
MaryLynn's picture
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Joined: 06/25/1999 - 09:00

My parents have tried their hardest to understand and keep my daughter safe. But I was not as comfortable with anyone else. That hanged last month when I was looking for a local teenage babysitter. This girl was a counsler at my daughters summer camp and was recommended to me by my daughter's previous preschool teacher. Turn's out she has a cusin and uncle who are both anaphalactic by taste and smell ( my daughter is to taste only).
Why not try asking if your allergist treats any teenagers who might be interested in babysitting?
Good Luck.
Mary Lynn

Posted on: Tue, 10/26/1999 - 2:20am
Gwen Thornberry's picture
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Joined: 10/14/1999 - 09:00

Hi Patty
I'm sorry you had such a bad experience, especially on your night off. Please don't let this discourage you from taking time to yourself in the future though. Your son is old enough to know that he should NEVER eat ANYTHING without making sure there are no peanuts in it. He should always make sure the adult looks at the ingredients before he eats it. If you can get your son used to doing this, it should put your mind a little more at rest.
I understand that other people don't take it seriously. My own grandmother once forced me (and I mean Forced) to eat a Starbar (I'm not sure if you have them in the US, but they are like Snickers, only made by Cadburys). Needless to say, I was ill for hours after - my reaction back then was only vomiting. More recently, my boyfriends family were giving him grief because he didn't want to eat chocolate which contained hazelnuts before he came to see me. People just don't get it.
In relation to your son not having a reaction to peanut oil, I read an article (I'm sorry I can't remember where exactly, but it was an English pa web site), that stated that in blind tests, most pa suferers did not react to refined peanut oil, however, most DID react to crude peanut oil. Aparantly the properties/proteins of refined oil are different to crude. Of course, they specified that pa suferers should stay away from all peanut oil!
You can't be around your son 24-7, so the best defence is to teach him to look after himself as best he can (while instructing others on his care also). I can understand how difficult it is for you to leave your children to the care of others, especially now, but you need your own time too, and nobody would fault you for that. You should take Mary Lynn's advice about the babysitter.
Best of luck.
Gwen

Posted on: Tue, 10/26/1999 - 8:03am
CathyT's picture
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Joined: 07/11/1999 - 09:00

I am PA, as is my 2 yr old son. What I have done that works is the following--my babysitters know that they cannot bring ANY food into the house. They can only eat what I have. They have practiced with the epipen, I spoke with their parents about the fact that they might have to give the epipen. These girls are too afraid to bring anything into the house. As far as relatives, I bought a huge poster from FAN about allergies, it says to call 911, etc. This seemed to scare everyone. I also have on the kitchen cabinets the steps to follow in case of emergency. All relatives know that they can't bring any food into the house unless I am there to read the ingredients. They have agreed to this, or they can't come over. Unfortunately, in the case of PA, I find that fear is the best motivator. Never feel guilty about having a babysitter, I am a firm believer that if your children do not see you as an individual with your own interests, aside from being their own personal servant, they start to really take advantage and show disrespect.

Posted on: Tue, 10/26/1999 - 11:21am
PattyR's picture
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Joined: 04/12/2002 - 09:00

Thanks for all of your support. I don't think I made myself totally clear. I was out of the state for a weekend for this wedding. I did give instructions for this person not to provide any outside food other than what I had approved. That is what is so frustrating! Even after telling her not to buy anything, she went and did it anyway. I do have a wonderful girl who comes to the house to baby-sit. She fully understands the allergy and is very careful about it and has never brought any food. Thank God that we have her so we can go out here and there for the evening. I guess there are just some people who "get it" and some who just never will! Thanks for letting me vent.

Posted on: Tue, 10/26/1999 - 12:29pm
Tammy Lynn's picture
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Joined: 06/26/1999 - 09:00

My heart goes out to you. I think we all know how you feel. I will pass on the wonderful advice our allergist gave us. If you leave your child with anyone, scare the living daylights out of them. He said he knew this sounded cruel but he also said they have GOT to understand how serious this allergy is. I use bee sting reactions. Most people know how severe they can be and I tell everyone that this is the same type of reaction my daughter can have. I also explain how one taste can be fatal. I have found that until this allergy is explained in this way, many do not take me seriously. Elizabeth, also 8, reads and double checks behind us all ingredients. We have taught her to look behind everyone and if she still does not feel safe, not to eat it. She knows what she can't have and reads the ingredients on everything else. She understands how dangerous her allergy is. Many people think I shouldn't be so frank with her but this is her life and she must understand how serious her allergy is. She realizes this is a life threatening allergy and she has to be careful. I know how frustrating this is but you and your husband need time for yourselves.
------------------
Tammy Lynn

Posted on: Wed, 10/27/1999 - 12:50am
MO's picture
MO
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Joined: 05/07/1999 - 09:00

My PA/Egg son is 2. I'm trying to find the words to use to explain this to him? I let
him watch me read everything and tell him it's "Okay for Alex". His daycare uses "
it could make you tummy sick"? My family also thinks I overreact. They roll their eyes when I bring out the epipen trainer. The only person who takes it serious is my
14yr old neice who knows a few PA children.
When she gets older, she will be my only babysitter! She's mature beyond her years.
My other dilemma is making friends? A women in our neighbor hood stops over with her 2yr old and I'm still uncomforable? I need to get over it and start teaching other parents but I don't really know how to start? I want
Alex to LIVE his life. Any suggestions of talking to a 2yr old, families or other parents would be helpful.

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