Where do I start?

Posted on: Wed, 07/12/2000 - 4:50am
CapeCodMom's picture
Joined: 07/12/2000 - 09:00

We just confirmed through RAST testing that our 15 month old son is allergic to peanuts. We had him tested after he reacted to a mouse sized nibble of a pb&j sandwich. He got red splotches around his mouth -- at first I thought it was jelly and tried to wash it off! I called the ped and they said give him some benadryl, and if he has trouble breathing call 911. Of course I had no benadryl in the house, and had to rush off to the store with the baby to get some. By the time I got to the store, the splotches had disappeared. He fell asleep on the way home. The ped said to let him sleep, but to keep an eye on him, and no peanut products until we got him tested. He was fine after that. Of course he has had nothing with peanuts since then.

I am relieved to have found this site. I think I have a general idea of how to deal, but am afraid I'm going to miss something. (I am also wracked with guilt -- neither his dad nor I are allergic, but I ate lots of pb while I was pregnant and while I was breastfeeding. Ironically, one of the major reasons I was so enthusiastic about breastfeeding was to prevent allergies.) I am a nervous wreck. I've been reading labels over and over again, even on foods he's already eaten without having a reaction. We have an appointment with an allergist in two weeks, which I am anxiously awaiting. What should I do in the meantime? How do you deal with people who think this is no big deal? Sometimes I feel like I'm overreacting, but then I read about someone having a bad reaction just from being kissed by someone else who just ate peanut butter. Parents of older children -- does it get easier or harder? I'll go now, because this is getting very long, but I'm sure I'll be back. Thanks in advance.

Posted on: Wed, 07/12/2000 - 5:17am
Heather's picture
Joined: 10/08/2006 - 09:00

Wow, that story sounds exactly like mine!!! On March 31 of this year I fed my 14 month old PB toast for dinner. He only touched it with his index finger - almost immediately his face swelled so much so that his eyes swelled shut, he turned bright red and got hives all over. I called the Pediatrician's office and they told me unless his breathing is affected, he doesn't need to go to the ER but to get Benadryl NOW! My husband ran to the pharmacy on the corner, cut everyone off in line and got the med. Even though the office said we didn't need to go to the ER, we went anyway. By the time the ER doctor saw him, he had a marked improvement. After the RAST test came back positive, the first thing I did was go to the library and get a book on peanut allergy. I was still going through my "mourning period" and I cried so hard when I read that book. I think I cried pretty much day in and day out. I think during that period I experienced Elizabeth Kubler Ross's stages of loss - denial, why me, bargaining,acceptance, etc. I remember calling my pediatrician in tears asking for a referral to a pediatric allergist. I too ate PB while I was pregnant and nursing. I thought there weren't any genetic links to a food allergy in my family until I did some research - found out my husband's family has excema, my father-in-law tested positive for a shellfish allergy (I never knew that), my sister-in-law is allergic to eggs (though not anaphylactic), asthma on both sides, environmental allergies on both sides, I have an allergy to penicillan. My point is, I'm not totally convinced that this is caused by the mother eating PB while pregnant and nursing. Look for my thread on the main board entitled something like "help dealing with the guilt". You'll see just how upset I was then and also see more information I gathered which makes me more of a skeptic of the mother cause theory. Hang in there, things will get better. People on this board told me that back in April and I thought it never would happen but little by little I'm getting better at dealing with this allergy. I thought I would never go out to eat and we have been out to eat a few times now in recent months. I thought I would never go on vacation and we've been away for the past two weekends. Do you have an EpiPen Jr? Have you contacted the Food Allergy Network? Those are two things I suggest you do immediately. Another is keep reading the posts on this website. I can't tell you what staying connected with other PA parents does for your spirit and emotional health!

Posted on: Wed, 07/12/2000 - 5:20am
latymom's picture
Joined: 05/21/2000 - 09:00

Hi! You sound EXACTLY like me and my daughter. We found out the same way and at the same age. My daughter is 2yrs 8mos now and she has only had one reaction since her diagnosis. Her reaction originally was the same as your child. Did your child scratch or claw at his face? Also one time after that, before she was tested, she vomited after eating a few "plain" M&M's. (which 50% of the time DO contain crushed peanuts.) Last week she ate chocolate from England that had NO nuts on the label, so she tried it and got little hives on her face, neck and one arm. The hives appeared about 15 minutes after she ate the candy. (can be anywhere from instantaneous to 3 hours, I've heard)I called the allergist who told me to just give her 2 tsps of Zrytec (which works like Benadryl) The hives were gone in minutes, and no further reaction. I'm sorry for rambling on......to answer your question, yes! it does get easier. You become more confident after you get used to checking the labels, telling your friends/family, and carrying the epi-pen. Remember that carrying the epi-pen EVERYWHERE your child goes is key. I believe most cases of death from peanut ingestion is because the epi-pen wasn't on hand. What I did was practice with an expired epi-pen on an apple to get the feel for how to administer it (and to see how long the needle was!) I don't think it ever stops being scary, but it certainly doesn't have to run your life. You probably have a perfect kid in every other way, try to concentrate on that part. That's what I do. Good luck!

Posted on: Wed, 07/12/2000 - 6:44am
Anonymous's picture
Anonymous (not verified)

Cape Cod Mom...your story sounds just like mine too! Our daughter was trying PB for the 2nd time (the first time I noticed a rash..but thought it could have been the cracker scatching around her mouth)...and had a reaction like yours. Of course, I did not have benedryl on hand either..Please let me tell you that it has been 2 months and yes, I cried alot and blamed myself (ate alot of PB during pregnancy) and couldn't undertstand as we don't have a history of food allergies (my husband had ragweed, pollen as a kid)..I guess it is life and now I am dealing with it. It just takes alot of education! I do feel postive though that they are working on a cure (well, I think it is a de-sensitization) for this peanut allergy. I think the company is Tanox and they are starting studies for this. My allergist seemed to think that within the next 5 years something should be out there to help with this allergy. Also, from the FAN conference I read 10-20% will outgrow. I know it may not seem like a high percentage, but it is some hope! Join the FAN and I suggest getting some of their brochures they have (not costly at all). I check in regularly with the FAN website and this one and it makes me feel better and that I can deal with this! Some days I do get down (like when we are out and I can't give her a bite of my food)..but other days things go great. As far as restaurants, I think that you will find that there are many many places for our kids to eat and many things on the kids menu are safe (grilled cheese, french fries, fruit, hamburgers) as long as the restuarant knows to be careful with cross-contamination. Ill stop rambling...trust me, it gets better every day!! take care

Posted on: Wed, 07/12/2000 - 9:14am
DMB's picture
Joined: 02/22/2001 - 09:00

O-K, I'll fourth that! That sounds like my son's first reaction, too. But in your case, you are lucky that you had a pediatrician who took it seriously. My son's first bite of peanut butter did not cause a reaction at all. The second exposure caused hives around his mouth and eyes. The pediatrician just said to give him benadryl and watch for swollen tongue or breathing difficulties--which he had neither. The pediatrician acted like it wasn't a big deal and told me to keep him away from peanuts for 3 months and then put a dab on his arm and see if he reacted! That still makes me mad thinking about it! Anyway, he had a few more minor reactions to just touch--the dab of pb on his arm and also a kiss from his cousin who had eaten a pbj sandwich earlier in the day. It wasn't until my son actually had an anaphylactic reaction (trip to the er and shot) did the pediatrician say that he should probably see an allergist. After the visit with the allergist, we really changed our ways--finally getting an epi-pen and carrying it with us at all times. He hasn't had a reaction since then and that was almost 2 years ago. Take a deep breath and try to relax because it WILL get easier! It just takes time. Keep reading these boards because you will learn so many things! Best of luck to you! Deanna

Posted on: Thu, 07/13/2000 - 3:29am
CapeCodMom's picture
Joined: 07/12/2000 - 09:00

Thanks so much for your thoughtful replies. You are all very kind to share your experiences with me. I hope I can be of help to you someday.

Posted on: Thu, 07/13/2000 - 6:20am
TheDaddy's picture
Joined: 06/13/2000 - 09:00

Our 14 and 11 year daughters are highly PA. Our 8 yr old son and everyone else in both our families are not allergic. Just our girls.
We found our about our oldest daughter's allergy when she was two. First of all, it get's easier with time. You develop a checking routine over the years until it becomes a habit.
Second, you can't overreact to anything regarding this allergy because it is so life threatening. If you get accused of overreacting, just smile because you are doing everything right.
Third, beware of the tricky stuff. Seafood restaurants are notorious for cooking in peanut oil. Tub chocolate ice cream at a convenience store caused our last reaction. (My fault, watch your husband as he may be a slow learner like me )
Finally, everything will be ok. The best peanut checkers of all are our girls. We have been living with this thing for 12 years and have never used our epi-pens.

Posted on: Thu, 07/13/2000 - 7:04am
Noslo's picture
Joined: 04/25/2000 - 09:00

Gosh, CapeCod your story sounds very similar to my son's as well. He was about 18 months, we were at a friends playing...my friend asked if he could have a Ritz Bits PB cracker and I hesitated ( I recalled something about waiting for PB til age 2). My friend persisted and said that I protected our Nicholas too much, so I said okay...immediately his mouthed got red blotches and he coughed every few seconds. I gently said that it was naptime and took him home and called the Dr. The Dr. said to get Benadryl..I didn't have Benadryl! I called my friend, told her the reaction and she went to the store for me...I knew then..and I was extremely careful. He had a terrible reaction from Chick Fil-A and then others from Chicken Noodle soup(campbells) and still other reactions to animal crackers. It is extremely scary, isn't it? I didn't go to the allergist until last month. He is now 2 and 1/2. We had a move and I really had mixed feelings about testing him. Our pediatrician in both the old state (tx) and the new one (va) didn't think we should. I did, he was a 5+ and now we know and we continue to learn. This website is a blessing..Thanks for sharing your story.

Posted on: Thu, 07/13/2000 - 8:30am
mkruby's picture
Joined: 05/01/2000 - 09:00

Welcome Cape Cod Mom...I just wrote you this long note, but lost my connection. So simply if I was to give advice it would be this:
Trust yourself, trust your instincts.
Knowledge is power, empowerment is strength.
Hope for the best, prepare for the worst.
Expect discrimination, be prepared for it.
Expect ignorance, have an answer for it.
Expect others to not understand..help them to.
Be assertive if necessary, but be kind for better results.
Teach yourself and others, teach your child.
Learn as much as you can, try not to get obsessed with it though..or you will go crazy.
Take charge of the allergy, don't let it take charge of you.
Enjoy life...try to find the right balance between living a normal life and being protective. (This will take time and experience)
You are not to blame, this is not your fault, it is just the card that has been handed to your child.
You can handle it and You can do it.
Also check out the "Trusting Your Instincts" thread and the "Comfort Zone Thread"

Posted on: Thu, 07/13/2000 - 12:55pm
veteran.pa's picture
Joined: 06/23/2000 - 09:00

mkruby, What a great answer!

Posted on: Thu, 07/13/2000 - 11:23pm
latymom's picture
Joined: 05/21/2000 - 09:00

I agree....that's a great way of looking at things! I also live by those philosiphies.


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