Reaction from testing-

Posted on: Thu, 06/15/2000 - 3:24am
PattyR's picture
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Joined: 04/12/2002 - 09:00

Well, I am really kicking myself but I went ahead with the scratch test for my son's PA. I told the Dr. my concern about a reaction prior to the testing. He said it was extremely rare but suggested we dilute the peanut protein 1 part to 100 parts water or saline (not sure). The decision was mine and I agreed. He got a huge hive at the scratch spot. It would have been considered very large for even the full strength. It was 10mm by 20mm. When we left the office he was fine. I was bringing my son back to school when he said that his throat felt tight. Panic! I called the Dr. and he said to turn around and come back. Give benydryl now and Epi if it got any worse or if any other symptoms started. He started to feel better at first but then as we arrived back at the Dr's office said it was starting to feel worse. I told them I really thought he needed the Epi and didn't want to wait. They went ahead and gave it to him and he responded immediately. We stuck around for a couple of hours but are home now. Bad idea? The Dr. gave us the go ahead but after reading some posts at my previous retesting post, I feel like we should still be there. I have three Epi's here so I feel safe. I will do it if I have to but also feel confident that the reaction is over (based on past experience).
Thanks to mkruby and latymom for your quick responses to my previous post about retesting on the main discussion board. I didn't get to see all of them before the appt. but appreciate your input as well. If it wasn't for that the Dr. would have suggested the full strength and then who knows what the reaction would have been like. We were pretty lucky this time. A problem for us is that my son borders on being phobic about shots. It took three of us to hold him down to do it. I am afraid that I wouldn't be able to do it on my own (physically) and know that he wouldn't give himself a shot. I am also afraid that he will deny a reaction to avoid getting a shot. Well, that was our morning. I really hate this allergy and that it the end of scratch tests for us. I'll be watching him very closely for a couple of days.
A little bit of good news at least. No reactions to milk, eggs, or even strawberries! After this morning I am chicken to do a food challenge (in the office of course).

[This message has been edited by PattyR (edited June 15, 2000).]

Posted on: Sat, 06/17/2000 - 10:45pm
PattyR's picture
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Joined: 04/12/2002 - 09:00

I am feeling a little disappointed that I didn't get any response to my post. I know that sometimes there just isn't anything to be said but I have been so down about this and so scared about how very sensitive he is.I know I made the wrong decision about the testing and am feeling really guilty about it.

Posted on: Sat, 06/17/2000 - 11:52pm
Tina H.'s picture
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Joined: 10/13/1999 - 09:00

I'm so sorry I didn't respond before. Please don't feel guilty. We all do at times, and there is no reason to. Your child has PA, as ours do. With our help, they will all grow up to be happy and healthy adults. There are worse things in life. Remember, the vast majority of PA kids grow up to old age. Nothing we could have done could have prevented the allergy, despite what some say. Take care.

Posted on: Sun, 06/18/2000 - 12:19am
Anonymous's picture
Anonymous (not verified)

Patty,
When I first read your message I wanted to respond but didn't know what to say! I guess, like on the other thread, we should always trust our gut instinct. I am not sure if you already mentioned this but when your son was first diagnosed PA did they do a RAST test or a skin prick? I am curious because my son had the skin prick and am wondering if I should be paranoid about him having another one done. I am so sorry that he reacted to the test...I would be scared too.

Posted on: Sun, 06/18/2000 - 2:28am
rilira's picture
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Joined: 11/11/1999 - 09:00

I think the main thing to remember is your son is fine now. You just experienced an extremely scary but educational episode. Sometimes we all make decisions which we may later wish we hadn't but it sounds like you learned a valuable lesson from this one. Trust yourself first!! Part of that trust is in gaining the confidence in your abilities. Your son may have a phobia about shots but if you had to inject by yourself feel confident that you could. I think if you knew it was just up to and your child's life is on the line you would find the strength to do it.I think part of the reason there were no original responses to your post is it hit to close to home. I know for me by reading it brought back memories of when I went against my instinct. Many people through out the boards have made comments about being afraid to make a "mistake" and thus hurting their child. Your story is one that could have happened to any of us. I think the point so many people have made and we all have to learn to remember is doctors don't know everything it is ok to question and insist and make a nuisance of yourself if you have to. I hope you are feeling better about the whole situation.

Posted on: Sun, 06/18/2000 - 5:04am
latymom's picture
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Joined: 05/21/2000 - 09:00

Your son is lucky to have a Mom like you. DOn't feel guilty. It's hard not to trust "professionals" and their decisions. It was good that you mentioned diluting it and like the above post says he's OK now and you've learned a valuable lesson, as we all have, from your post. My daughter has never needed the epipen yet, it must be a terrifying experience.

Posted on: Sun, 06/18/2000 - 6:02am
PattyR's picture
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Joined: 04/12/2002 - 09:00

Thanks for your responses. The people here at this board are the only ones who truly understand. I really appreciate your support. NaomiR, my son was originally diagnosed with a scratch test. At that time, he did develop a very large hive at the site but nothing else. He was only two at the time so it is possible that he felt uncomfortable but was unable to express it.

Posted on: Mon, 06/19/2000 - 8:43am
Lydia's picture
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Joined: 03/22/2000 - 09:00

Pattir, Just wanted to chime in at what a great job you are doing, this is the most stressful thing I do is care for my 5yr old Pa daughter. Sometimes I can get lost in the terror. But we come back out and take care of our kids that is their blessing, and ours too.

Posted on: Tue, 06/20/2000 - 12:17am
Lisa M's picture
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Joined: 03/07/1999 - 09:00

I'm sorry that I never even read your first post. I think sometimes it is a time issue and I never make it down the list of threads to reactions/stories! Sorry! I am so glad that you were so honest with your feelings to let others know that you were disappointed in not getting any responses! I would have felt the same way. And it was so heartwarming to see others post their support! You were smart and acted appropriately when your son said his throat felt tight! Good for you for not just letting it go on and waiting to see what happened!

Posted on: Fri, 06/23/2000 - 2:51am
Tammy James's picture
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Joined: 06/01/1999 - 09:00

PattyR,
I'm sorry you and your son had to go through that!! I am concerned, also, that you didn't go to the ER after giving your son the Epi. I thought that was protocol.? Or was your Dr.'s office in a hospital setting? I have always been told to go straight to the ER after giving an Epi. Just curious.

Posted on: Fri, 06/23/2000 - 7:20am
PattyR's picture
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Joined: 04/12/2002 - 09:00

Our Drs. office is right across the street from the hospital. I guess I felt safe in his office. He is an allergist. Maybe he should have sent me there but we really nipped the reaction in the bud. It is hard to know what to do when there are some many different opinions. That is one of the frustrating things about this allergy. I was there was a cut and dry list to follow!

Posted on: Thu, 06/29/2000 - 6:37am
KPOHAGAN's picture
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Joined: 06/24/2000 - 09:00

Dear PattyR,
What an awful experience!My little 5 year old reacted in school twice last week needing his Epi.It is a real scary experience.I find that I am living on my nerves this week.It really has it's aftershock.
I think you did the right thing.It is wonderful to hear that he has grown out of the other allergies .If you hadn't retested you wouldn't have known this and what a difference this shall make to his diet.

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