Thought my family \"Got\" it!

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You know, I was so proud of my family, both sides, for their support with this allergy. Last night, went to Mom's for her birthday and there was Sis#1 and #2 with a combined number of 6 children. Oh it was a disaster. Let me preface this by saying I feel very comfortable in Mom's house. Her house is peanut free (her own doing) and she reads *everything* down to the shampoo she uses on her dog. To continue, it turns out child #5 had PB for lunch and sis#1 relied on his answer to the question "Did you wash your hands" I might add, child #5 is 8 yrs old and like many 8 yr olds, he lives in a world of his own revolving around his skateboard and his game boy. Well, after Lauren and child #5 "danced", Lauren came to me with hands ever so slightly swollen and a rash on both of them. It went from her knuckles to her wrist...no further. She also had it on her fingers between the joints and her knuckles...only on the top of her hands though. Sis#1 got very defensive when I suggested I thought it was child#5 who caused this (3 other children did not eat PB and two others had left by the time this happened. Don't know if they ate PB that day but they didn't engage in this "dancing") and Sis#1 blew up at me. I tried to tell her that I didn't care who caused it. I care that we identify the problem and propose and implement a solution so that it doesn't happen again. The solution was, if children 1-6 are going to continue to eat PB, then when there is a get-together, all children must wash their hands before going near Lauren. That wasn't good enough. I've insulted her and her family by insinuating that child#5 might have causd the reaction. Child#5 does not lie, she says. I never said he did. But anyone every see a kid wash their hands when there is playing to be done? This was not the only peanut related incident. It started the minute we walked in the door and sis#1 is holding a take-out pizza menu..."Will Lauren & Abbey eat pizza?" Not..."Can Lauren & Abbey have THIS pizza?" I explained the peanut thing again and she responded with "In Pizza?". No. I'm making it up because I want to put the pizza businesses in the world out of business. (I didn't say that, I'm winding myself up again) She continues with (not verbatim) "Well, geez, my kids won't eat anything else....Their father was supposed to feed them but didn't so now they are starving....Now what should we do....I'm so mad at their father for not feeding them." On and on with variations of this for 40 minutes all the while she is not doing anything to find something else for the kids!!! Like I'm not supposed to feel a bit uncomfortable about this? I tell her I will leave but she say I can't because I'll upset Mom if I leave. I offer to go to our "safe" pizza place a little further away and she tells me, "Oh no, you don't have to do that". Arrgh!!!!! Then there's the store-bought cake that she brought to the house. She knows Lauren can't eat store-bought cakes. My mom was prepared and the girls ate a "birthday sundae" and enjoyed making it so I was OK with the emotional part. But who was the cake for anyway...not my 58 year old extremely health conscious mother. It was for kids 1-6. She intentionally left them out. After the cake, the dancing started again. I asked child#5 to wash his hands. He went to the bathroom, turned on the water, ran his hands through (literally) and turned the water off. I heard him in the bathroom and the water on/off but was a bit numb because of what I had just been through with sis#1 and the reaction. I "woke up" when Sis#2 yelled at child#5 telling him it wasn't funny and he went back in and cleaned them better. Why didn't we leave at this point? Well, the first because Lauren had only received the bendryl a few minutes prior and I wanted to see where this was going before I hopped in the car alone with the kids in the back to head home (no cell phone...think it's about time). Since we didn't know the source for certain, I thought this was the smartest thing to do.

Unfortunately, I don't think we will be getting too involved with Sis#1 anymore. Sad too. Lauren loves all her cousins and they are all **incredibly** close.

We gave her benedryl and the rash on her hands did not clear up. It stopped itching her but it remained extremely red (as red as your cheeks will get on a very cold windy day). The rash was not raised. It was tiny, tiny dots on her hand that seemed to thin as you moved to towards her wrist. We've been giving her Benedryl every 4 hrs since 6:30pm last night and one hand finally cleared by this a.m. but the other is still quite red on 1/2 of it. We checked her every hour overnight to make sure there were no additional marks on her.

Sis#1 seemed to doubt my ability to judge a reaction. I feel quite confident it was but would like a second opinion. Anyone ever see a rash like this? Sorry for the length and thanks for the vent. Andrea

On Jan 25, 2001

I think we ALL experience these things. Here is my vent: 2 weeks ago my mother was watching my PA 8 year old. Mom baked a cake and told her it was safe. The second it was in her mouth, her lips were tingling and her tongue felt "funny". She told my mom who immediately dismissed it "Oh, you're fine" Fortunately, her older sister knew enough to call me on my cell phone. By then, my younger daughter's chest tightened. I told mom to give her the Epi-Pen NOW and call 9-1-1. She argued with me and I was screaming "DO IT NOW" I turned the car around and was there in 5 mins. The paramedics greeted me like I was a nutcase. Mom never gave her the Epi...told the paramedics I was over-reacting. My daughter has almost died twice from reactions and has asthma, which makes her high risk. Her mouth was tingling and her chest was still tight, but since it was not worsening, the paramedics refused to give her an Epi...wanting to take a wait and see approach. I wasn't about to wait until she got worse... The EMT's made me sign a release and hold harmless waiver since I was going against their recommendations. I gave her the Epi and Benedryl...they transported her to the ER. She was fine within the hour. I am now educating our village's emergency services on why it's not safe to wait for full-blown anaphylaxis with high risk PA kids AND dropped off 10 journal articles, the "It Only Takes One Bite" video from FAAN, and numerous other support materials to my mother. UGH! Andrea, I feel your pain!

On Jan 25, 2001

Oh, my goodness!! You two (and your children!!)certainly have been through a lot lately! In both cases I say this: NO ONE knows your child better than YOU do!! Do what YOU know is best for whatever the situation!! (Once my husband actually physically pushed his own sister's face away from our son's before she kissed him after she ate a nutty dessert! Nicely, but still...)

Perkins8P - I'm so glad you 'educated' the medical personnel as well as your family! I'm shocked about the release form!! [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] Amazing.

Andrea - If you really want a second opinion, here's mine: I think it was a reaction, exactly as you thought, from the 'dancing'. If the same scenario happened to my child, that's what I'd think it was, too. I am a bit curious as to why the rash hasn't gone away yet. Any contact reactions our son has had have gone away quickly with Benedryl and a good washing, so that's all I have to compare the situation with. I hope your daughter is better now.

On Jan 25, 2001

Dear Andrea, I am glad that you called it a dance. A dance is exactly what it is. I can deal with just about everything except when someone argues with me about the life threatening peanut allergy. I want you to print off some of our responses and give them to your sister. Tell her lying is not the issue. Life and death is the issue. Tell her if she in any way shape or form has any part in the death of her niece that she is not allowed to attend the funeral. I will never understand how people actually misinterpret our trying to save our children and keep them breathing, with their rights. As far as I am concerned your sister has none. I have dealt with the type before. I wish they could feel an allergic reaction first hand but that is not for me to decide. I tell my son to steer clear of the people who poison him. I never again want to hear that they didn't hurt him on purpose. And then expect me to console them. It is over, move on, never let it happen again but DO NOT ARGUE WITH ME ABOUT THIS! Everyone is entitled to be educated. I would be happy to teach anyone all I know. Your sister has chosen to argue with you over having a relationship with your child. Her loss and your gain. Good Luck! Sorry, but I took on some of your anger. I am glad I am not alone. I am angrier though that we have to go through this at all. What happened happened. I am over that. She argued with you. I will never forgive her for that. From one great Mom to another. Keep up the good work! Gennie

On Jan 25, 2001

Wow. This really hit home for me, not because we attend family functions, but just how it showed again how quickly a reaction can happen and how easily. It is a very good reminder to all of us. Everything that followed, well, I don't even know how I would deal with it.

I do know that after Jesse had his first anaphylactic reaction from being in our neighbour's home and eating pb (they knew he was allergic and denied that he had eaten anything but gave their daughter a pb sandwich while he was there), I made sure that the next time the child visited our home, I asked her if it would be okay if I lifted her up and helped her wash her hands (they were 2-3/4 years old at the time).

Andrea, is it possible to print out some literature to send to your sister? Or, another passive-aggressive technique I have, and I shouldn't even tell people that I do, but if they ever doubt something that I am talking about - i.e., I get severe migraines, whatever - I will call say The Migraine Foundation and have them send literature to the person by mail. It's usually done within a space of time that the person receiving it wouldn't have a clue that it was me that made the phone call and requested the information. Now, I'm not promoting passive-aggressive behaviour when it comes to dealing with PA. As Gennie pointed out, this is a life or death thing and certainly not something to be argued about.

How did Lauren feel when all of this was going on or did she notice?

I just told DH the story as he was trying to read your post over my shoulder (he reads too slow! LOL!) and he said that if he knew there was going to be a family gathering, he would expect that pb would not be eaten that day or if it absolutely had to be (although that one I will never understand), that the children or whoever would be thoroughly cleaned before they went to your Mother's - hands with soap for a good period of time, faces with soap, teeth brushed. You get the idea.

It is so sad to hear yet again more stories of families that simply don't "get it" and then are actually capable of arguing with us about it. If our own families can't "get it" how are we ever to expect other people to. Yes, I know the answer is education. But how do we get it out there en masse?

Oh, and as for whether it was a reaction or not, I think it was. Is there anything else that Lauren is allergic to that would have made her hands swell and have hives so quickly after the dance other than pb on her cousin's hands? Probably not.

Please let us know how she's doing. I'm very sorry this has happened, for your whole family. How was your Mom?

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

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On Jan 26, 2001

Thank you and thank you again for your support.

Lauren is doing fine. No other symptoms appeared. By the time I got home from work at 3:30 yesterday the rash was pretty much gone. It was weird though. I mean when it was its worst, it almost looked like her hands were burned. Best I can guess is that he had a lot of oil on his hands and she didn't notice the itching while they were playing. As far as we know, she has no other allergies except to amoxicillian.

Lauren worries. Once I suspected a reaction and dipped into the medicine bag, she got very nervous. She's been in the hospital for asthma now 4 times and time #3 was very rough. Since then, she gets nervous when she thinks she's sick...afraid she'll end up in the hospital. She was OK as soon as I saw her nervous I put my "calm words" into effect. She responds well to my voice when I do that.

The funny thing is with Sis #1, she knows about the life/death thing. After all was said and done I approached my mother about the whole event. I told her I was upset because she did not defend me and my position. Mom told me that Sis#1 does care about Lauren and protecting her. She said they were talking about us coming over for the party and Sis#1 was worried about her make-up, if she had eaten/touched PB and was not clean enough, that although it was Chinese food she wanted to get the kids for dinner, she didn't want to do that with Lauren around. (Hello?! Wash your hands, don't kiss her with lipstick on or take it off, don't order Chinese food. Hello?!) So she's wierd, Sis#1 that is. I mean, it's like she talks the talk but does not walk the walk, you know. Although I like your ideas about sending her the literature and these comments, she'd just toss it saying, "I know all about this stuff." She's a student nurse and you know what they say, a little knowledge is dangerous.

Unfortunately this whole family issue has gotten worse. It got to the point that I had to tell Mom and Sis#1 that if they couldn't be part of the solution (including acknowledgement *to themselves* that child#5 was the most likely source) then they were part of the problem. If there is a problem, then I can't chance exposing Lauren to it. Not again. That means, I just don't go to Sis#1 house... ever (where the kids are allowed to eat in their rooms) or to Mom's house (or any other relatives house) when Sis#1 is there with her children. It sounds like a threat, but what else can I do? Sis#1 has played a role in now 3 of 4 of Lauren's reactions.

Thank you all again. Andrea

On Jan 26, 2001

Andrea, Glad to hear your daughter's okay!

About your sis being a student nurse... I have a SIL who has an adult PA friend. Because of this friend, my SIL THINKS she knows all about it. I don't think there's anything worse than someone who THINKS they know all about PA, when they really don't. DANGEROUS!!! Hang in there. We're all hangin' in right beside ya!!

On Jan 27, 2001

Andrea, sad to say, but if Sister #1 played a part in 3 out of Lauren's 4 reactions, then I don't think I'd be dealing with her for awhile either. I don't understand.

Sometimes I think my kids are missing out because we don't live close to family and don't go out of our way to travel to see family. But, I actually prefer the isolated life we do live. At least I know that they're "safe" and we can deal by mail or by phone and not have to see toxic people in person. I know that must sound awful.

Certainly there was always the expectation that our children would be close to their cousins in ways that we weren't close to ours and on and on, but life hasn't worked out that way and perhaps there is a reason. Also, when I was growing up, my Grandparents didn't live close to us at all. I cherish my memories of seeing them each summer and then later, in my pre-teens, even during the winter. But they were "up north". It was still very separate.

I shudder whenever my DH mentions visiting his mother with the kids. I'm not clear about the one SIL. I think she might be okay to visit or have visit, but it would involve some education on my part re PA, which I would feel comfortable about. Then, the other SIL, well, she is not emotionally well enough to "get it" so I wouldn't feel "safe" there either. On my side, my Mom literally pops into my home for very short visits and she always brings "safe" food and goodies with her. My sister lives in Montreal and I don't see her, unless she decides to grace my presence once a year!

Now, that may all sound terribly sad, and, if you let it be, it can be very sad and disheartening. On the other hand, I NEVER have to experience what you did the other night or have my child put through that.

When I asked how Lauren was, I also wanted to know how she was as far as your Sister #1 arguing with you about the reaction.

And, you're probably right, literature wouldn't do any good. However, if you had it sent from a passive aggressive "friend" who lives in a totally different country......

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

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On Jan 28, 2001

Lauren didn't quite see what was going on between Sis#1 and myself. Although we had a major argument, I don't think Lauren knew what was going on, only that Mom was very upset and had to leave quickly. Funny, you are talking about isolation. We actually began looking for a house last spring. We needed to get away...you know, too close for comfort. Don't get me wrong. I love my family dearly and having to do this really upsets me but it's just not working being so close. We're only moving to the next town over but logisticly, it not in the best location...not easy to get to I mean. No nearby highways, etc. so it would be an extra 20 min to get to our house. Cindy, the kids just woke so I have to go but I will be sending you an e-mail with a question next time I log on. Thanks again. Andrea

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