When do you stop living in fear?

Posted on: Fri, 05/11/2007 - 5:09am
mom0810's picture
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Joined: 03/30/2007 - 09:00

I am a person with adult-onset PA. I have been on this board for a while, researching things and trying to navigate this new life. I have yet to go to an alergist--appt. is next week. I am planning on getting a blood test, hopefully ImmunoCAP. It is an allergist that I found through this board, so hopefully he is a good one. I have never had the allergy confirmed, other than little reactions here at home, one of which sent me to the ER.

I am pregnant, so not willing to get skin tests, as if I needed and EPi Pen, it could hurt my unborn child.

The people here are so supportive, and I just wanted to reach out and see if anyone here can offer me any other advice-be it on allergy testing, doctors (I am in Illinois), foods, or whatever.

Thank you.

Posted on: Fri, 05/11/2007 - 5:44am
Momcat's picture
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Joined: 03/15/2005 - 09:00

Hi! I'm a parent of 2 kids with food allergies. I can tell you that I do not live in fear. I try to live by the motto:
"Don't be scared, be prepared."
Make sure you have your medications with you at all times, a [b]written[/b] allergy action plan from your doctor, don't eat anything if you can't read the label (for us this means most restaurants are out, except for some fast food), get a Medic Alert bracelet. Doing these things has helped my family take charge of our food allergies. As long as we follow our plan, we have no reason to worry.
I'm glad you are going to get the blood test. I agree that it is the best option for you now, and will be no risk to your baby.
If you think about it, we take risks all the time in our lives--a good example is riding in a car. We feel comfortable with these risks because we take steps to minimize them, like seat belts, air bags, and careful driving. Electrical appliances can cause house fires, but we use them anyway--we just make sure our smoke detectors have fresh batteries. Manage your food allergy risks the same way.
Also, remember that pregnancy hormones can make you feel a bit paranoid (at least they did me [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] ).
I hope this helps!
Cathy
------------------
Mom to 7 yr old PA/TNA daughter and 4 yr old son who is allergic to eggs.

Posted on: Fri, 05/11/2007 - 7:38am
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Joined: 05/28/2009 - 16:42

I'm not allergic, but DS is. You start out afraid, but it subsides to more of a concern. Of course, I have moments of being afraid, but no more so than being afraid he will run out in the road and get hit by a car. We all have that little bit of fear--it keeps the race alive.
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[url="http://www.the3day.org/boston07/deedaigle"]http://www.the3day.org/boston07/deedaigle[/url]

Posted on: Fri, 05/11/2007 - 7:45am
mom0810's picture
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Joined: 03/30/2007 - 09:00

Thank you both so much. I guess I got freaked out because I posted on another list about the CAP rast and got a totally fear-mongering reply from another woman who basically told me that I am going to die if I don't get an EPI pen NOW. I mean, I know I need to see an allergist (doing that next week), and be cautious or at least aware, but I really don't think expecting the worst is productive for anyone. I just thought it was a little much for her to try and scare me like that. Perhaps she is new to this, too?
I am more sensitive because of the pregnancy, that is for sure.
Thank you for helping me put this in perspective.

Posted on: Fri, 05/11/2007 - 11:13am
Momcat's picture
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Joined: 03/15/2005 - 09:00

I'm sure if your blood test comes back positive, or possibly just on your reaction history, your doctor will prescribe an epipen. Just read labels and be careful until then and you'll be alright for a week-- [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Cathy

Posted on: Fri, 05/11/2007 - 12:56pm
Anonymous's picture
Anonymous (not verified)

Quote:Originally posted by mom0810:
[b]I am pregnant, so not willing to get skin tests, as if I needed and EPi Pen, it could hurt my unborn child.
[/b]
I know the answer to that one. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
I also have adult on-set allergies and I did have an anaphylactic reaction prior to my last pregnancy. So, it was a very real fear for me -- what if.....
There is a children's hospital in my city which has a fabulous program called MotherRisk. Residents can call and speak to medical professionals about any medical questions regarding pregnancy. Prior to getting pregnant I called to find out if some medication I was on was safe during pregnancy. I also talked to her about allergy meds. After making sure the ones I took were not considered risky, I said, "but I guess I can't use an epi-pen while I'm pregnant that would be dangerous" and she replied "you'd think so wouldn't you -- but it's not". Epinephrine is not a drug in the traditional sense. It is adrenaline, which is something your body manufactures - but in an anaphylactic reaction you can't manufacture enough.
So, I highly recommend you speak to your OB about the epi-pen. It is only to be used in an absolute emergency -- so does s/he feel there is a risk with it.

Posted on: Fri, 05/11/2007 - 10:36pm
mom0810's picture
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Joined: 03/30/2007 - 09:00

Annamarie,
Thank you SO much for that info. I will speak to my OB about next time, or call during the week to double check. I feel lots better knowing that IF I needed it, it would be okay. I just really don't want anything to hurt the baby, obviously.
This is a whole new life and very scary some days. Some days I deal with it fine, others I am a nervous wreck. Prior to a recent incident where I was in the ER after eating fries that had been fried in PEANUT OIL with no idea that restaurants even did that (see how clueless I am??), I was just avoiding things with OBVIOUS peanuts in them (like you could SEE the nuts). But now I know so much more thanks to the people here, and I feel so lucky that nothing happened to me in the 2 years between when my allergy started and when I found out more about it.
I had a negative RAST last year, but I had not had any exposures in almost two years. So it could have been a false negative. I am hoping that the CAP RAST shows something, otherwise I feel like this is a big mystery, and maybe my anxiety is causing me to think I am more allergic than I am??? Don't know. I would LOVE to get a definite answer.
How did your adult onset PA manifest itself?

Posted on: Fri, 05/11/2007 - 10:44pm
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Joined: 05/28/2009 - 16:42

You have to put fear in perspective. It is a good thing to have. It's motivating one to stay safe and plan ahead.
It's only when fear becomes crippling that it becomes a negative.
Only you can determine that level though.

Posted on: Sat, 05/12/2007 - 1:11am
Anonymous's picture
Anonymous (not verified)

mom0810, I was in my late 20's and had two children when I suddenly started breaking out in hives. Initially it was just an uncomfortable inconvenience. I had absolutely no idea it was allergies. It got to the point where I was reacting daily -- and sometimes it was hives from head to toe.
I became very scared of food. I started at about 105 lbs, and lost about 20 lbs.
At first they said it was not allergies, but I was starting to see a pattern and eventually got testing done. I reacted to almost everything. Neither the doctor nor I felt it was accurate. I found a few safe foods and ate just them, occasionally adding in something else to see if I would react. It took a few years, but I pinpointed peanuts and sesame seeds as the culprits. The first test to just them was negative. It was a few more years before the doctor agreed it was an allergy to those two foods. Eliminating even trace amounts finally stopped the reactions -- I now average about one reaction per year, but it's usually minor.
Unfortunately, the years I continued eating the allergens, my reactions got worse and worse until they became anaphylactic. That brought the fear back, and I again lost a lot of weight. But, the ana. reaction is also what led me to realize sesame seeds was the second food -- so in a very warped way, I guess it saved my life. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
When we decided to have another baby, I was very careful. I ate well, but very little processed food. Pregnancy agrees with me, and I was healthier then usual. And no reactions. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
How far along are you?

Posted on: Sat, 05/12/2007 - 5:18am
mom0810's picture
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Joined: 03/30/2007 - 09:00

I'm about 13 weeks. I am so glad you finally figured out what was causing the reactions.
It is so strange to me that this can happen later in life. I had no idea until it happened to me.
My reactions have been pretty benign, I suppose. Once I had an itchy throat after eating PB&J and once my hands got itchy after touching PB. The most recent reaction was scarier, after eating peanut oil, and I am not really sure if it even WAS a reaction or if I just freaked out. I had a couple of hives on my arm and I was dizzy and about an hour later had explosive-um- I was in the bathroom a while.
This last one was earlier in my pregnancy and it was really scary because of that. They would NOT give me epinephrine in the ER because of the baby, so that is why I thought I could not have it.
Beth

Posted on: Sat, 05/12/2007 - 7:52am
mom0810's picture
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Joined: 03/30/2007 - 09:00

AnnaMarie,
My breathing and BP were okay. I think because I had a major anxiety attack, that helped. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] They did keep me there for a while to monitor me, and gave me 25 mg of Benadryl in the IV, which they put in when I came in, just in case I would need anything quickly. They took good care of me. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I just had never heard of adult onset allergies like this. Something clicked on during my pregnancy, obviously, and I guess I am kind of hoping the "switch" gets flipped off during this pregnancy. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] It's just a whole new lifestyle, and it's a hard adjustment on top of everything else.
Thanks so much. This list is a great way to get support and I appreciate every reply.

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