Do you talk about your child\'s PA?

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I've been around this board for a while, but I have never introduced myself. My almost 2 year old son is PA. We found out almost exactly a year ago when I fed him a cracker with peanut butter spread on it. What a surprise! Fortunately, I had purchased Benadryl the previous week when he'd had a rash. I later remembered that I had given him a tiny slither of my PB&J sandwich the night before the rash. Anyway, his face immediately swelled like he'd been beaten. I quickly phoned his pediatrician who told me to give him Benadryl, and that I could bring him in if I'd like. Well, that was a stupid statement. I have never driven so fast in my life. Well to make a long yet familiar story short. Once I got my son to an allergist (had to plead with Ped. to even give me a name of one. A referral was absolutely out of the question.) he tested very + to peanuts and some environmental stuff. The allergist immediately prescribed an Epipen Jr and Pediapred and helped me to get educated. My next visit to the Ped I was told that I didn't need the Epipen and that he would expect that from an allergist. Fired! Yes, Fired!

We now have a very good pediatrician and allergist, and we are doing quite well now that my initial shock, denial, paranoia, etc. have subsided (probably temporarily). This site has been very helpful, although I have to admit that I can't come here but about once or twice a week. It's too painful, and reading other's experiences sometimes makes me worry too much.

Finally to my original question. Do you talk about your child's PA with people you are around? Do you feel comfortable discussing it? I recently met a woman who's approx. ten yr old son is PA. I sensed that she was not at all comfortable discussing this and that perhaps she really didn't want anyone to know.

I personally don't broadcast this info, but I tell everyone that my son is going to be around for any length of time and anyone who that I know has any type of serious allergy. I feel that the more people know about it the safer he will be. Of course, I realize that just telling them doesn't mean they understand. I believe it takes some actual experience with it to have any understanding.

My bio - I have drug allergies but no food allergies in my family that I am aware of. My husband isn't aware of any in his, either. I was gestational diabetic and ate lots of PB and nursed for a short time during which my son cried almost constantly. I did continue with the diet while nursing. I also have Grave's disease which is an autoimmune disorder which effects the thyroid gland.

Wow, I didn't know I had it in me to say all this. I apologize for going on and on.

Have a great day!

On Apr 16, 2001

Hi I am Claire and my son is Christopher. He is 14 and very allergic since 10 months old. YES we have always talked about his allergy to foods with everyone. I will stand up in any class room or any meeting with people and tell the severity of this allergy. I have taught him the importance of people knowing. If we don't tell then how can people help him if he were in a reaction situation? There is absolutly no reason a child or adult should be embarrassed about something like this. I don't think we should talk about it constantly,but let everyone that will be dealing with our children know that they have a life threatening allergy. For one thing we found out that the bus driver had no idea that he had an allergy. He came home from school one day and could hardly breathe. What had happened is a child had eaten on the bus and had peanut butter. He had to get off thank God and was having a reaction. If this had happened any further away from home then he may have had major problems. I called the bus garage and educated them and I did it in a way that would not get the child in trouble on the bus,but let them all be very aware. The kids are not supposed to eat on the bus,but teenagers on a bus are going to do this. If I had kept his allergy a secret my son may not live the next time,because the bus may be alot farther from home. I always taught my son that people will like you for whom you are not because of a silly Peanut Butter Sandwich. There are still so many people that have no Idea peanut allergies exist so we need to always talk about it. If we tell at least one new person a day or a week we are educating a lot more people because that one person will tell many.Keeping a secret about an allergy like this makes no sence at all. What if a child was at a play ground having a reaction and we were not there. The child could die. My son at 14 goes places with many friends and family. If my niece didn't know about his allergy then she would not know to give him epinephrine. Also his friends mothers have all been willing to learn about his allergies. Well this is one of those topics that I could talk all day about,but anyway I feel the more that know the better the child will be. Take care claire

On Apr 16, 2001

Hi there! Absolutely I talk about it! How else are we going to make people aware of the severity of penaut allergy. My son is 3 yrs old and we just got diagnosed in Jan. I couldn't sleep for about a month out of worry for him and the kind of life he's going to have. Anyways, I find that the more I talk about it the better I feel. I was surprised at the support I got. But I was more surprised that alot of people don't realize how dangerous PA is. Ignorance can kill my son so I'll keep on talking.... Tina

On Apr 16, 2001

I'm the allergic one (don't have any kids) and I do talk about it. I have found that it is all about the phrasing: always firm and persistent, with a touch of humor whenever feasible. This condition makes me terribly anxious & I have found people to be more likely to be cognizant, helpful, and interested once you have either engaged them personally or with wit. It comes off as slightly less of a hysterical exaggeration... but then again, my background is in psychology, education, and comedy.

On Apr 16, 2001

Oh, geez, sometimes I think it's all I talk about. Usually the first reaction is, "Oh, I didn't know that could be so serious!", followed by a number of questions. But, I too think it makes me feel better. It eases my mind knowing that by telling everyone I possible can about it that one day one of these people might actually be one to save her life or that of another PA child.

Andrea

On Apr 16, 2001

It does seem like I talk about his allergy a lot. But I think that it has more to do with the fact that I'm always around other mothers with children and we're always talking about our children. PA is just one of the things that makes Evan special.

Nowadays, it seems like everyone I meet has a child with some kind of food allergy, environmental allergy or asthma. Our conversation just naturally leads to our children. I don't think there has been one person I've told about my son's pa that didn't already know how severe it could be. Deanna

On Apr 18, 2001

Now that my son is almost 6 and he wants to go to a friends house, I talk about it more to people outside of family and friends than ever before. Most people are very understanding and I feel are willing to make any changes so my son will have a safe visit. Some are very scared and would prefer my son didn't come over. I'm glad they are truthful, the last thing I want is someone who isn't prepared dealing with him. It's a scary thing, but I agree the more people you talk to the better informed they will be.

On Apr 19, 2001

Thank you for responding. I'm happy to know there are people who feel the way I do about discussing such an important issue. Helping to make people aware of Severe Allergies can only help those of us who have to deal with them on a daily basis.

Perhaps I just caught this woman off guard. I was just surprised at her reaction. Who knows, maybe her son had asked her not tell anyone else because he seems to have it under control. I don't have any idea how an older child may deal with this.

On Apr 19, 2001

Yes, I talk about my son's PA (he is 4 and I definately want to make sure those around him are aware of it). Regarding the mother you spoke with in your post...I think you probably hit the nail on the head with your last message. My neighbor's son is around that age and diabetic and he HATES when people talk about it. I think the preteen years are a time when kids don't want anyone (that doesn't need to know) talking about how they are different. Maybe he and his mother agreed not to discuss it unless it was a necessity. Just a thought.

[This message has been edited by kelly01 (edited April 19, 2001).]

On Apr 22, 2001

Perhaps the other mother is still experiencing a little denial. I have personally run into the same situation with two other mothers. They know their children are PA, but I don't think either of them have really explored the depths of just what that means. Several times I have mentioned areas of concern in a PA child's life and I usually get a "OH, I didn't think of that..." in return. Now, I've thought that myself many times reading posts on this board, but in talking to these two particular mothers, I get the impression that their PA education stopped shortly after diagnosis. Maybe the other mother you were talking with just didn't know enough about it to carry the conversation.

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