Overwhelmed and Frightened

Posted on: Tue, 07/06/1999 - 7:44am
Ginger's picture
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Joined: 11/17/1999 - 09:00

I just got back from my son's allergist. Posting this message is the first thing I am doing. I need as much info as we can get-FAST! I post my son's story last week. We got his test results back and it was our worse nightmare. He came back a high class 5. The Dr. told me she is considering him a class 6 since he is only a few points a way from a class 6. His RAST test came at 24220. What does all this mean? A class 6? Does that mean his PA will be airborne? Does that mean no one can touch him if they have had peanuts in the past 24 hours.
Do I need to go for a second opinion? We are not crazy about this allergist. She has a personality of a clipboard. And she could work on her bedside manner. She told us so abruptly. We had a million questions but she was extremely busy today with our heat wave with asthma, she said to make another appointment. I feel like she gave us extremely bad news and shoved us out the door.
I would like to hear from others who have a class 5/6. Am I suppose to focus on those numbers? I am so upset and overwhelmed I don't know where to begin. Thank you -Ginger

Posted on: Tue, 07/06/1999 - 9:20am
Noreen's picture
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Joined: 01/24/1999 - 09:00

Hi Ginger:
I'd follow your intuition and get another allergist. The last thing you need is a doctor without a bedside manner when it comes to administering this allergy. Just for a reference point, my son's allergist has a private number which he gives out only to his patients with life-threatening allergies. We can call him day or night. Once we called him at 2 in the morning when my son was experiencing breathing problems and he called back two minutes later. So I'd suggest you find someone a tad more caring than your present physician.
As for the RAST, my son is a low 5 and he only reacts by ingestion. However, all three reactions have been severe, the last one where he experienced breathing difficulties.
When a child or adult is first diagnosed, the first few months are off-the-charts for anxiety. Arm yourself with information by reading this entire site, including the old boards. As time goes by, you will gain more confidence in your ability to protect your child from reactions. If your anxiety doesn't level out over time, you might want to join a support group or consult a professional.
Noreen
[This message has been edited by Noreen (edited July 06, 1999).]

Posted on: Tue, 07/06/1999 - 9:25am
Liz's picture
Liz
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Joined: 01/17/1999 - 09:00

Hi Ginger
The first thing to do is STOP PANICKING!
Your son is still breathing. I assume you have no pn items in the house. (really, NO pn items in the house at all).
How old is he? If everything is going into his mouth then you will have to watch him carefully.
Otherwise, just make sure that G'ma or any one else doesn't give him a pntty kiss or candy with out an ingredients list that YOU check.
Cook from scratch. I mean really from scratch, flour eggs milk etc, not mixes.
Airborne peanuts are not so common that he'll be keeling over just walking out the front door. And he may not react to that anyway - even with a 5/6 reaction level.
Don't panic. This is survivable. If you get agitated about everything he touches though, I can guarantee loads of other problems that will make pn allergy the least of your nightmares.
Liz
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Posted on: Tue, 07/06/1999 - 10:22am
tracy's picture
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Joined: 02/03/1999 - 09:00

Ginger,
Don't focus on the numbers. People have been told they should be concerned if their child tests with a RAST level of 1 (and also told to carry an EPI pen)! An allergist friend told me that the higher the RAST level, the more likelihood that your son has a peanut allergy, not that he's more likely to have a fatal reaction.
Secondly, ask about getting a CAP RAST test. I'm going to ask our allergist about getting one; supposedly it's a more accurate test, but I don't know much about it. (I heard about it at the Food Allergy Network's patient conference.) In your case, it may not tell you much more. As I said, the allergist told us that my son's RAST level of 5 was a good indication that he had a peanut allergy and I think the CAP RAST is a more accurate indicator of a true allergy.
You're definitely allowed to be emotional (we've all been there), but just realize that your reaction will have more of an impact on your son than anything else. You need to deal with this allergy in a calm, rational manner. He needs to develop the skills to take care of himself as soon as possible, and your becoming very emotional will not help him at all. This is much easier said than done of course.
You will read a lot of scary things, on this web site and elsewhere. (When I first found out about my son's allergy, I thought if I read "Peanut allergies are the most fatal of food allergies..." one more time, I was going to scream.) Realize that everything sounds much more emotional in print -- or that you can take it that way, especially if you're very reactive. There are millions of people who live with this allergy and who are just fine. Statistically, they are more likely to die in a car wreck than from the peanut allergy.
That being said, you need to put together an emergency plan, always carry an epi-pen, and always inform your son's caretakers of his situation. Most of the people who had fatal reactions didn't take these precautions (according to a food allergy network study).
I agree with Liz... cook everything from scratch. It really isn't that hard. I think it's not much more work than opening up a box. I've gotten much better at cooking and my son eats more healthy now. I have a much better understanding of what ingredients go into foods. I also freeze a ton of food. I take food with us on trips. I also know some safe foods we can order for my son from restaurants, like grilled hamburgers and macaroni/cheese. In the beginning I thought, "How are we going to do this, everything has peanuts in it!" Now I think "most things don't have peanuts, we can handle this."
I too had a million questions to ask our allergist. We didn't like our first allergist, so we switched. This gave me time to write down every single question in my brain. I posted these questions on this web site in the Main Discussion Board last February or March with the title "Questions to ask the allergist." It might still be around (I haven't checked).
And finally, there is a lot of hope. There is lots of promising research out there. A cure or immunotherapy may be available in the next 10 years. Check the "Research" discussion area for information.
--Tracy

Posted on: Tue, 07/06/1999 - 11:40am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Ginger - I agree with Tracy about pulling the post about questions. That post came out about the time we first saw the allergist and we printed all 25 pages and made him answer every question before we left the room. I believe I posted the answers that I received and so did some other people. I would offer to drop the questions off ahead of time so the doctor can review them or at the very least warn them you are going with a list. They can make more time for your appointment. We also made an appointment where we did not bring the children and just asked questions. It cost us $90 but it was worth it.
Definitely get a plan of action and post it anywhere that your child is (e.g. preschool, grandma's). We have one posted on the inside of the cabinet in our kitchen where we keep the sippy cups so you see it 100 times a day. There is also two in the classroom at preschool and one in his "cubby." We sent one in each sleep over bag last night when he stayed at "uncle David's" house. I also take a moment if we go somewhere new to run through the emergency procedures in my head. This came in handy when he had a reaction at pre-school. Everyone thought that we had gone through this before because I knew what I was doing but it was actually our first time. (Little did they know I was terrified.)
Follow your instinct about the allergist. You have the information you need to know to avoid peanuts (for the moment). Now it is time to find someone that you can work with during normal times and in a crisis. I wish we had followed our instinct with our allergist. We did not feel he was aggressive enough in treating our son and last week he proved our fears right. The allergist did not examine Spencer last week when his reaction first started and because he blew us off we spent 5 hours in the ER and the last week trying to deal with the left over symptoms of a reaction that should have been taken care of right away. Listen to the inner voice.
I would also recommend starting to talk to those around you. It will help them to avoid exposing your child.
Hang in there!
------------------
Kelly M
Another Mom in Michigan

Posted on: Tue, 07/06/1999 - 1:55pm
ElizabethsMom's picture
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Joined: 04/17/1999 - 09:00

Hi Ginger
Welcome to the board. I don't even remember our daughter's RAST and it was just done in February (keep reading). We too were unhappy with our allergist. I had to struggle to get an EpiPen prescription, left his office and immediately made an appointment with another doctor. The switch was worth it. The new allergist spent several hours answering questions, providing education and discussing preventative measures. After meeting with him I felt like the weight of the world had been lifted off my shoulders.
The gold nugget of information we came away with was that the RAST test indicates an allergy is present but does not indicate the severity of a reaction. This is important. And it is also why I haven't bothered to remember Elizabeth's score. A person with a relatively low, but positive RAST can go on to have an anaphylactic reaction just as a person with a higher RAST may only experience hives. The real indication of the severity of future reactions is what that reaction has been like in the past.
The second most important thing he told us was that, thankfully, most food allergy reactions are actually stable over the long term. For example, it would be reasonable of us to expect that our daughter's reaction will remain a hives-only reaction throughout her lifetime. HOWEVER, some patients experience reactions that increase in severity with each exposure - this can be true for shellfish, fish, eggs etc. just as it is for peanuts. There is no way of predicting whose reactions will get worse so every food allergic person should strictly avoid trigger foods in order to protect him/herself. We carry Claritin and THREE EpiPens just to be sure - and thus far our daughter only gets hives!
Third, the part that had me beaming with relief - is that the majority of peanut allergic people never actually experience an anaphylactic reaction, although you wouldn't necessarily know it by our board. We tend to be a bit frightening for newcomers since we use this as a means of support for a very scary situation. And we all hope that ourselves or our children will be the ones that never experience an anaphylactic reaction but we all are completely prepared in the event of one - to repeat, we carry three EpiPens and Claritin for a child whose reaction has never been more than hives.
Like Tracy said a few posts back, you will be happy to find that Peanut-free products exist in abundance and eliminating them from your lives will be easier than it seems right now. So too will this allergy be easier to manage than it initially seems. First, find yourself a sympathetic new allergist - we waited two months to get an appointment with ours and he was well worth it. Second, educate yourself as much as possible - you will find yourself blazing trails with this one, third realy on us for support. Let us know more about your child and how you are doing!
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Kristin

Posted on: Sun, 07/11/1999 - 12:58pm
Anonymous's picture
Anonymous (not verified)

Ginger,
It can all work out fine. Just plan and study. Learn to change receipes. Be honest with child when old enough to know importance of medicines will make feel better even though there is a little hurt with it.
i even barter with my son so that if he reports other in class got a special treat and he didn't then he get 3 safe treats from me.
My 9 year old son is a class VI to peanuts and some other foods(actually he is higher than test can measure on 3 foods) yet he is doing extremely well and has been educated about safe foods and the fact that I routinely double check with food companies before I let him have new foods. We had to stop some foods when companies changed ingred. to include a restricted food for him(there are 14 foods/food families he can't have right now). Yes, he has had anaphactic reactions(hives and wheezing) but since we've had EpiPens which is almost three years we haven't needed to use one. I feel so much better now having medicines available,medic alert ID, Sheet with plan of action for school personnel and summer child-care, parents of next years class will be given FYI on food allergies, And teacher will have his med's on hand along with school nurse and after school care providers. He's had to deal with asthma, severe dry skin, and food allergies all his life. He is also happy active bright loving child.
His CAP RAST levels are coming down on some foods. Hang in there.
Jan B. in Maryland

Posted on: Mon, 07/12/1999 - 7:59am
MaryLynn's picture
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Joined: 06/25/1999 - 09:00

Ginger,
My daughter,Jen, scored 81,576 (catergory 6 or as my allergist put it "off the charts") just recently. This was a retest as she was becoming allergic to other foods. I agree with the others-get a new allergist now! I had to wait 2 months before seeing the allergist for the first time and after a visit to the ER we waited 2 weeks. However, when we went in for a visit we were able to ask as many questions as we wanted. He also pointed us the way to the Food Allergy Network, the have a web site and an 800 number (800-929-4040). They put out a very informative news letter and even have one geared for kids at no additional cost. If you call tell them thaaat you are new to this and they suggest some other helpful items.
Good luck
Mary Lynn

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