PA Mom with PA Son

Posted on: Sun, 07/11/1999 - 12:52pm
CathyT's picture
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Joined: 07/11/1999 - 09:00

I'm a 37yr old mom with two boys, 3 1/2 yr &
2 yr. I am PA, and we just found out my 2 yr
is also. Since I know firsthand what this
entails, needless to say I have been upset.
Are there any other PA parents with PA kids?
I feel like a dirty trick was played on me,
twice. I found this site this week, and have
noticed a lot of concerns of parents with
regards to when their kids get older. If it
helps any, it does get easier to deal with.
I went away to college, travelled quite a lot
due to business & pleasure. But, I do feel
that having a child with PA is a new ballgame. And one that I am tired of playing, and it has just started.

------------------
CathyT

Posted on: Sun, 07/11/1999 - 9:38pm
Christine's picture
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Joined: 02/03/1999 - 09:00

pCathy,br /
Welcome to the boards here! It sure is scary when it happens to your child isn't it? We can almost handle things better when they happen to us because we know then that we can be in total control. But, let's face it, we can't be everywhere are children are or see every move they make, especially if we have other children to watch. It is tough. I know how you feel about feeling that you've had a dirty trick played on you twice. Isn't it enough to have one bad thing! I was diagnosed with thyroid cancer when my son was about 6 months old. When he was 8 months old and I was in the throes of trying to make sure I was going to be okay, he was diagnosed with the peanut allergy. I thought "what am I being punished for?" Well, hopefully you will feel better by visiting these boards and venting your concerns.br /
Christine/p

Posted on: Mon, 07/12/1999 - 8:05am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

pChristine - I don't mean to get off the subject but please tell me you are doing better!?!?! I feel the "dirty trick" factor too. We have a PA son and a daughter facing a kidney transplant when she hits her teen (during the growth period)./p
pCathy - My mom (the grandma) has a very mild peanut allergy. So mild in fact that I never knew until just recently./p
p------------------br /
Kelly Mbr /
Another Mom in Michigan/p

Posted on: Mon, 07/12/1999 - 9:42pm
Christine's picture
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Joined: 02/03/1999 - 09:00

pKelly,br /
Thanks so much for asking. Yes, I am doing much better. Fortunately, most thyroid cancers have a 99.9% cure rate (whew!) and as all the doctors tell us thyroid cancer patients--"if you have to get any cancer, thyroid cancer is the one to get." Nevertheless, it is still very scary and requires much monitoring over my lifetime! How come your daughter will require a kidney transplant?br /
Christine/p

Posted on: Tue, 07/13/1999 - 10:38am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

pChristine - Madison (almost 3 yrs old) was determined to have a blockage in her kidney before she was born. It acts kind of like a stopped up sink. In the kidneys when the waste products don't drain properly you get lots of infections. We had an antibotic resistant one about 18 mos that made her kidney stop growing (apparently some died). They are very concerned about the strain on her "good kidney" from the repeated infections. She takes antibotics everyday to prevent infections but it has been a long road! They know us well at the hospital./p
pTake Care! Kelly/p
p------------------br /
Kelly Mbr /
Another Mom in Michigan/p

Posted on: Thu, 07/15/1999 - 7:36am
Anonymous's picture
Anonymous (not verified)

pHi Cathy and welcome to the boards./p
pMy son (age 5) is allergic to peanuts and I'm very sorry your son was diagnosed with this dreadful allergy./p
pHow did you handle your own P.A. growing up? /p
pHow did your parents handle it?/p
pI love learning from the "adult" population with this allergy on how things were done differently than what we do with our children or if everything was done the same. /p
pI don't think one could ever be informed enough about this allergy. /p
pPlease share your experiences with us./p
pI wish you and your family luck!/p
pStay Safe!/p

Posted on: Fri, 07/16/1999 - 9:12am
CathyT's picture
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Joined: 07/11/1999 - 09:00

pConnie,br /
I handled my PA differently than from what I've seen here. It became clear to me that very few people wanted to be responsible for giving me the epi-pen, or you got someone that found you "fascinating", like a bug. So, very few people know about my PA. Even as a child, I just naturally stayed away from anything remotely having to do with nuts. My parents say they cannot explain it.br /
Being a teenager was difficult, due to the natural tendency to "hover smother" from parents, as I call it. I refused to wear my Medic Alert bracelet, and only began again when I was pregnant with my first child. Now, of course, I feel a tremendous burden that nothing can happen to me, as I have 2 toddlers. Before that, I took each day as it came, and relied on myself to call 911, etc. Of course, when my son enters preschool, I will alert everyone, etc., but as he gets older, I hope I will remember how I felt, and respect his decisions. One thing I am going to teach him is that food is only fuel to get you from point A to B. Society places WAY too much emphasis on it. I had a much easier time of things once I realized that, and once I became much more active in sports, etc. I learned to ski, and run 5 milers, (even with asthma), and it is a huge difference in how I feel with regards to being "different". Sorry for running on.br /
Cathy/p

Posted on: Mon, 07/19/1999 - 4:47am
Anonymous's picture
Anonymous (not verified)

pCathy,/p
pThank you for your insight on your own experiences with your allergies./p
pI am one of those people that tends to "hover" and "smother" when we are out and about with Cameron and I know my attitude has a big effect on his personality. (Some days are better than others)./p
pOne thing I have started to do with Cam is let him take control of his allergy...even at the age of 5, by letting him ask for the manager of the restaurant, instead of me or my husband, and explaining his allergy and what the chef cooks in, etc. (I got that advice by reading one of Tracy's posts on this subject) and I think it has really helped./p
pThanks again for sharing your childhood experiences. I think you have a great handle on things!/p
pStay Safe!/p

Posted on: Mon, 07/19/1999 - 11:16pm
SteveW's picture
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Joined: 04/08/1999 - 09:00

pThe head of FAN gave a presentation on the management of PA at the Baltimore conference. Just like other things, you gradually turn over more and more responsibility for allergy management to your child. You can never start too young. My son beginning at 19 months responded (when he wanted to):/p
pQ: What do you say about peanuts?br /
A: No peanuts for me./p
pQ: What does your bracelet (medic alert) say?br /
A: Allergic to peanuts./p
pHe does not understand everything he says, but it's a good start./p

Posted on: Tue, 07/20/1999 - 6:56am
Anonymous's picture
Anonymous (not verified)

pSteve,/p
pThis is such an important step! Like you, we have also "drilled" our son on his allergy since he was 10 months old and the "what if's" of other people. Granted, at that age, they don't know what is going on, but as with anything, repetition is a life saving technique with this allergy./p
pIt is scary enough teaching our children not to accept food from strangers, let alone teaching them not to accept food from people they know. /p
pI need to improve on my own skills of turning the "control" over to my son and "his" allergy...to guide him without controlling him. We'll see how I do when he starts Kindergarten in 4 weeks...this will be the real test! /p
pI would love other people's feedback on this subject and get their idea's of how to "turn over" the control./p
pStay safe!/p

Posted on: Tue, 07/20/1999 - 8:15am
MCouchie's picture
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Joined: 05/18/1999 - 09:00

pI understand thos of you with the feeling of being punished.....it seems all I ever hear about anymore is cancer. It's becoming like a common cold. In 1994 we found out that my husband had a brain tumor. They were only able to remove 75% of it and since then we've been up and down with his health and treatments. On top of everything else we have to deal with, we find out that our son is Peanut allergic, and has asthma. We just can't catch a break! But looking on the other side, there are always people in worse situations, and althought this peanut allergy is scary and life-threatening it is manageable, and I believe that things will get easier as the years go on. Just thought I'd comment. Stay Well everyone!/p

Posted on: Tue, 07/20/1999 - 10:50am
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Joined: 05/28/2009 - 16:42

pMcouchie - I am so sorry to hear about your husbands health problems! You must feel the weight of the world on your shoulders!/p
pI feel like this website gives me the ability to "let it all out" so that I can get back to the business of raising my children as normal as possible. It is not an easy thing to do but it gets better after I have had my "PA.COM" fix! [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]/p
pI loved everyones suggestions about giving the responsibility to the children as they are able to handle it. Thinking about it leads me to believe that this may be the only way I can live with him being out of my sight. /p
pI am very much like the person who posted that they tend to "smother" their child. I admit completely that I do it. My parents and husband think that I am trying to "make up" for this happening to Spencer./p
pThanks for the suggestions!/p
p------------------br /
Kelly Mbr /
Another Mom in Michigan/p

Posted on: Tue, 07/20/1999 - 11:19pm
SteveW's picture
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Joined: 04/08/1999 - 09:00

pMcouchie,/p
pYou are absolutely right. There are always people in worse situations. I work in a children's hospital. Anytime I start feeling life isn't fair, I think about (or see) people much worse off. For example, the 1-2 pound neonates who have a high probability of major developmental problems. Patients who have many different kinds of cancer, patients who have/need transplants or brain surgery, patients confined to wheel chairs and can never function on their own. /p
pThis puts my problems in perspective./p

Posted on: Wed, 08/04/1999 - 3:19pm
Cynthia's picture
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Joined: 02/04/1999 - 09:00

pHi Cathy!br /
i am a 35 year old mother of 3 boys; 6, 41/2 and 10 monthes old. I am PA and have lived with this alldergy my entire life. My reactions now are quick and severe. My oldest son is also PA. It was no great surprise to us as he is a typical allergenic child. My father-in law also has mild PA - we really double whammied our children! Our second son has been tested twice and shows no allergic response. It is still too early to tell about the baby.br /
I feel it is somewaht easier to deal with a PA child having lived with this my entire life. We are facing Grade 1 this year and that means lunch at school. I am presently getting together as much info as possible. I live in the Bay area, California or, "the land of peanuts"! It is exhausting to try to make change so for the present time I am focussing only on my son and how to change all school policies.br /
I am curious about how your allergist explains PA in your child when you would not have ingested any and I imagine you never gave any to your son?br /
I feel that education is the key. Everyone I have come into contact with is very supportive. We are hoping for a great year at school. Hope to hear from you, Cynthia....../p
p------------------/p

Posted on: Thu, 08/05/1999 - 4:17am
CathyT's picture
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Joined: 07/11/1999 - 09:00

pHi Cynthia!br /
The way both allergists explained my son's RAST is that even though it is uncommon, it can happen that you have never been exposed and still test positive. One thing I have come to see is that there is so much drs don't know about allergies, especially food allergies. Yes, rationally I know I have an easier time dealing with and understanding my son's PA, since I am myself. However, from a totally selfish point of view, I feel that if I wasn't PA, I would be blissfully ignorant (until a reaction happened). When I got the call from the dr that my son was PA, I truly felt like I was handed a death sentence, because in a flash, I knew how his life (and his brother's and father's) would change. I do hope that I will be able to make his path a little easier, since I've been down the road he'll be on. Yes, I agree educating is important, but what I have found is that you really can only rely on yourself with any certainty. So, my goal is to get my son to understand how to deal with this as quickly as possible. Not that I wish PA on anyone, but it's nice to talk to a mom who's in the same (leaky) boat!/p

Posted on: Tue, 08/17/1999 - 12:40am
Sue B's picture
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Joined: 04/15/1999 - 09:00

pIt's great to hear from PA adults because it lets us know that this is a manageable allergy. I have also given my 5 yr old PA son more responsibility for his allergy. He carries his own Epipen in an "epibelt" which he wears around his waist. He also knows to ask if food is safe if anyone offers him something to eat and knows he doesn't take food from anyone he doesn't know. Another one of our rules is absolutely no sharing of snacks and food at school, etc. and no drinking from water fountains becauses of the chances of there being traces of peanuts. We were even able to send him to two seperate day camps for one week periods this summer. The counsellors were very well informed of the allergy and use of epipen and one of his counsellors also had the same allergy which gave me great peace of mind. We will be facing our biggest challenge in September with him entering grade one and the question of staying for lunch. I believe that our greatest defense is EDUCATION and I am certainly working on this at his school. I find the ones who are most willing to help and listen and the other kids in his class - they have been great and certainly look out for each other. Stay safe./p

Posted on: Wed, 08/18/1999 - 4:18am
rebgaby's picture
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Joined: 08/09/1999 - 09:00

pSue B wrote that her son will ask if food is safe before eating it, and won't accept food from anyone he doesn't know./p
pAs an adult PA person, I would modify those instructions a bit due to personal experience. Asking if food is safe does not insure that it is - I once had a person tell me there were pecans, not peanuts, in some popcorn - I ate a tiny bite, and when I returned from the ER, I asked the person again. He said "Yes, I said peanuts. Pecans? Is there s difference?". Another person swore up and down that her chocolate brownies had walnuts. I took a tiny bite, and when I got back from the ER, she looked in her garbage and found the bag - MIXED NUTS. These people were well aware of why I was asking. Also, a person can be telling the truth that there are no peanuts or peanut butter in an item, but there is butter/margerine/jam in it which is contaminated with PB. /p
pSo my new protocol is that I simply don't eat ANYTHING unless I read the ingredients on the bag (although I have since modified that so that I don't eat any snack foods at all), or I made it myself in my own kitchen. Sounds pretty stringent, and very difficult for a child, but even given these precautions I have still had two allergic reactions in the past 6 months! /p
pIt's important that your child have snacks etc. made by you which he can eat when others are having a special snack like birthday cake or something at school. I find I run into trouble when I am starving and didn't bring anything safe with me./p
pGood luck!/p

Posted on: Thu, 08/19/1999 - 3:55pm
Momma Kitty's picture
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Joined: 04/04/1999 - 09:00

pFAN puts out a helpful booklet called "Letting Go: Teaching a Child Responsibility". My PA daughter is only 4 and I have been working with her since 18 mos. As she grows older I'm finding my stress level higher due to loosing complete control as she enter school age, birthday parties, and really wants play-dates. This booklet gave me some ideas on how to deal with the next several years and teaching her to take care. It's a steep bumpy (and tiring)road ahead but hopeful when she is a PA adult I will have done right./p

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