Oral challenge proved negative skin test to be wrong :(

Posted on: Wed, 06/09/1999 - 1:21pm
Shan's picture
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Joined: 04/05/1999 - 09:00

We went to the allergist today for an oral challenge for peanuts. I didn't feel the negative result on the skin test was right. I quess my gut instinct was right all along. It didn't go so well. My fifteen month old daughter started screaming and pulling at her head from just holding the bread with peanut butter on it. After one LICK she developed hives on her face and her checks swelled. They gave her a shot in the arm and the hives went away within minutes. But, after waiting in another room for a couple of hours she was still pulling at her face so they gave her some Zrytec on top of that. We were sent home with Epi-pen Jrs and a prescription for Zrytec. (Is anyone using this instead of the Benadryl?) I have corresponded with several of you over the last couple of months after my daughter's first reaction to a peanut butter and jelly sandwich. Everyone has been so helpful with all my questions about MMRs, bad peds, and such. I just haven't been on here lately because I was starting to relax and believe it was truely a fluke or somehow connected to her reaction to her MMR and the skin test was correct. I was still avoiding peanuts, but just didn't think today was going to turn out so bad. I can't stop crying. It is all so real now. Some questions-we were told to give her the shot as soon as she has a reaction and then go to the emergency room. I've read alot of you give Benedryl first? The prescription he gave me for Zrytec was for after the Epi-pen if she is still reacting. Also, I read on the insert that the Epi-pen Jr is for thirty three pounds and up. My daughter is only twenty one pounds. Is this safe? Does anyone have a medic alert on their toddler? Does her reaction seem severe? I asked and he said all reactions are severe. That answer just didn't do it for me. Also, should I worry about a relapse? He didn't mention anything and tonight she has a rash all over her again. I hope this doesn't last weeks like the last one. I wasn't prepared to ask questions because I was thinking everything was all fine. I just can't believe the skin test was wrong...I'm so sad. [img]http://client.ibboards.com/peanutallergy/frown.gif[/img]

Posted on: Wed, 06/09/1999 - 1:27pm
keri's picture
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Joined: 06/02/1999 - 09:00

i am not sure what time zone you are in so i dont know when you posted this in relation to my reply but if i were in your situation and my child was developing symtoms again after a reaction i would head to the er NOW. good luck

Posted on: Wed, 06/09/1999 - 3:05pm
Donna's picture
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Joined: 01/31/1999 - 09:00

Shan,
There can be second /delayed reactions. If that happens go to the ER. My son was on Zyrtec for a while, we were to give it first & then the epi. No matter what after you give the epi go to the ER don't wait for anything.
Find a doctor who will answer your questions. Why did they let her taste it if she was already reacting? If needed they could have put a bit on her skin to look for hives, etc. before letting her ingest it.
Your daughter is in my thoughts,
Donna

Posted on: Wed, 06/09/1999 - 11:28pm
Lou Anne Caputo's picture
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Joined: 06/08/1999 - 09:00

Hi Everyone,
My son is 10 and we have had several situations, Deadly....God has blessed us truly...This is the procedure
1. Inject Epi
2. Liquid Benadryl ( I give almost double what the lable reads, Believe me the worst side effect is that they become sleepy and you have to keep them awake )
3. Get to a ER, Immediatley if you live far away, 911!!!!!!
DON'T HESITATE AND BETTER SAFE THAN SORRY!!!!!
IT CAN CHANGE IN SECONDS!!!!!!!!!
REMEMBER!!!!!!! EVERY REACTION IS DIFFERENT AND EVEN IF YOU FOLLOW THESE PRECAUTIONS IT MAY NOT WORK......
THIS IS A LIFE THREATNING SITUATION !!!!!
Please don't think I am cruel...My heart aches every minute, every day for our children and more as they get older and we can't be there every minute with them.....
God Bless and Be Safe
------------------
Lou Anne Caputo

Posted on: Thu, 06/10/1999 - 1:40am
kbrosn's picture
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Joined: 01/28/1999 - 09:00

Shan,
How is your daughter today?
She is in my thoughts too -
Kath

Posted on: Thu, 06/10/1999 - 5:35am
Rhonda's picture
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Joined: 04/21/1999 - 09:00

Hi Shan,
Firstly, my thoughts are with you and your little girl - I hope she if feeling better today [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]
When my son (21 months) was diagnosed around his 1st birhday the Ped. Allergist performed a skin test which showed positive to Peanuts (only peanuts so far)
I asked all the questions about out-growing it and so on. The Doc. let me know that we should consider him allergic and that we will perform another skin test when he is four. He said he would not do a oral challange unless the skin test, along with two additional blood tests showed a negative to peanuts. Only when every other means possible to detect the allergy are exhausted would he then do an oral challange.
I am just wondering if your little girl had any blood work done or just the skin test that was the false negative??
I feel confident that our Doc. would only think about doing an oral challange when the coast is clear (so to speak)
Good luck and my prayers are with you and your family.
Rhonda

Posted on: Thu, 06/10/1999 - 6:14am
Jessica's picture
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Joined: 03/23/1999 - 09:00

Shan,
How is your daughter doing today? I hope she is well after such a horrible experience.
My son is 18 months old. We have known for about 6 months he is allergic to peanuts and eggs. He had a reaction to both when he was 12 months old. We just confirmed it with a skin test by an allergist last month. He said to use the epi then benedryl if needed. What is the difference between Zyrtec and Benedryl? Is one better than the other? My son just got his first medic alert bracelet. I thought it would bother him, but he loves it. Again, I hope your daughter is OK.
Jessica
[This message has been edited by Jessica (edited June 10, 1999).]

Posted on: Thu, 06/10/1999 - 8:13am
Anonymous's picture
Anonymous (not verified)

Hi Shan-
My heart breaks as I think of you sitting there watching your daughter go through that, and not knowing if you're doing it "right" or if there is something more you can do. Just as each child is unique, so is each reaction. My daughter's reactions have been a little different each time. You asked about a protocol for a reaction. I'm sure everyone has a slightly different approach, but my daughter's allergist gave us a "what do to" sheet for a suspected reaction. It says to give the benadryl first and then the epinepherine shot...unless the patient is unconscious, then you skip straight to the shot and give the benadryl when the patient awakens. I will tell you that my daughter usually throws the benadryl back up. We ALWAYS take her on to the E.R. to be checked out, and they usually end up giving her more benadryl while there. A subsequent reaction can occur, so be sure to keep extra epi-pens on hand; especially if you live more than 15 minutes or so away from a hospital. I highly suggest getting your daughter a Medic Alert bracelet. I'm sure you've read on this site how helpful they can be, and they will have one small enough to fit your daughter. My daughter's first reaction did not occur in a doctor's office. It occured about 20 miles from nowhere in the middle of a rural area. She was only 18 months old. She, like your daughter, only tasted the peanut, but didn't bite into it or swallow it. We noticed that she looked pale as we buckled her into her carseat. Soon she started throwing up, broke out into hives, and her breathing was very shallow. She was very lethargic. We had no idea what was happening! So I guess that yes, first reactions can be severe. You have a great advantage in this site; I wish I had had it 8 years ago!
You & your daughter are in my prayers... please keep us posted on how she is doing since the reaction.
[This message has been edited by KWest (edited June 10, 1999).]

Posted on: Thu, 06/10/1999 - 8:56am
Shan's picture
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Joined: 04/05/1999 - 09:00

Thanks everyone for all your messages. It is so nice to get advice from people who understand. I kept her in our bed for half of the night, but ended up moving her to the crib. She slept through the night great, although I stayed awake most of the night watching her. Her cheeks have been a little swollen and she has had a small rash popping up here and there all night and day. Everything is happenning just like last time, but not as severe. I quess the shot they gave her really helped. I'm hoping the rash won't last as long. I'm giving her Zrytec (this is like a presciption Benedryl). She seems fine. She even had a friend over today to play with. I'm getting things together now that I've calmed down. I ordered her a medic bracelet today and a million things from FAN. I'm going to type up and laminate a list of numbers and instructions to keep in her diaper bag, too. Both grandmas got an Epi-pen and I got one for the house and her bag. (Do you use a second Epi if needed? How do you know? I'm still worried she is too small for the JR. Any thoughts?) Several of you asked about the oral challenge being given. We have been through a long three months almost trying to get an answer. We've had bad peds and insurance nightmares. It was really my idea to go back to the allergist. I wanted him to do a blood test, but he was certain the skin test was correct. I knew something in that sandwich that one bad day caused her reaction. It was almost like no one believed me despite her huge reaction which lasted for weeks (even a few relatives). I've complained and complained. My mom even wrote a letter to our HMO insurance company for me. Since this ordeal I have found a GREAT ped who understands food allergies. We go back to see her in a couple of weeks and it will be interesting to hear her comments. I must admit, the allergist was very good yesterday and handled things very quickly. I just wish he hadn't been so adamnet about skin tests always being correct. She was quite restless that day and hard to hold for the test. What I'm now wondering is why didn't the ped that saw her that original time give her an Epi shot? This makes me so mad. They sent me home and she suffered from that rash and swollen face for weeks. I also had to BEG everyone for an Epi-pen since the beginning and was never given one until yesterday. OK, now I'm getting worked up! LOL I still don't know-does her reaction seem very severe? I'm wondering about people eating peanuts and touching her and stuff. How do you know what will be too much for her? I have no test result to compare. Sorry so long. Thanks again everyone. Shan

Posted on: Fri, 06/11/1999 - 1:53am
Donna's picture
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Joined: 01/31/1999 - 09:00

Hi Shan,
So glad your little one is feeling well enough to play! That's GOOD. Every Dr will do things differently and probably tell you something different and every patient can react differently. It's not a consistant allergy for alot of people. You have found the right place here. Just read and learn all you can and keep fighting insurance & ignorance. I think almost everyone has a problem with getting people to believe the seriousness of pnut allergy(or any other anaphylactic allergy) unless they have seen it or experienced it. It's frustrating, but you are not alone.
Donna

Posted on: Fri, 06/11/1999 - 2:53am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Shan - Our Ped. says if 15 minutes after giving the first epi jr. shot your child is still having problems (e.g. dif. breathing, etc.) then administer another shot.
My husband and I have decided that this is our course of action:
1. Benadryl/Epi Pen combo for severe reaction
2. Immediately after the Epi shot dial 911.
3. Take note of the time so that you know when another shot can be given by you or the EMT's in your community.
4. If reaction happen while in the care of someone other than me or my husband all caregivers have been instructed to call us last.
You may also want to check with the EMT's in your community to make sure they carry Epi meds. Some of the posts have indicated that not every community is allowed to do so.
Shan on your question on appropriate dose of Epi meds. My husband and I did a lot of research on this subject and talked personally to Dr. Woods from John Hopkins Univ. (recommend by someone on another thread) and he told us that Epi Pen Jr. was made for children and can be used by children including a child weighing 25 pds (which is what Spencer weighs). Our allergist disagreed but our ped did some research and also agreed and now we have several Epi Pen Jr's.
Fortunately we have not had to use anything but Benadryl, however, we are using that several times a week for minor reactions. I am having trouble deciding if Spencer has another allergy that we haven't identified or if I am not being careful enough. He has not left the house in a week and his symtoms are getting worse.
My thoughts are with you and your family! Stay strong!
Kelly

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