Oral challenge proved negative skin test to be wrong :(

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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]

On Jun 9, 1999

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

On Jun 9, 1999

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

On Jun 10, 1999

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

On Jun 10, 1999

Shan,

How is your daughter today?

She is in my thoughts too -

Kath

On Jun 10, 1999

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

On Jun 10, 1999

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).]

On Jun 10, 1999

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).]

On Jun 10, 1999

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

On Jun 11, 1999

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

On Jun 11, 1999

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

On Jun 11, 1999

Thanks Kelly. Wow, I'm really confused now. The allergist told us to give her an Epi shot at the first sign of a reaction. It seems alot of you just give Benedryl for mild reactions. But, how do you know if it is going to stay mild or get worse? The allergist told me it will only progress...Do I just give her a shot at the first sign of a hive? They did yesterday. She did pull at her head and scream though first just like she did the first time it happened. My dd is only 21 pounds. I wonder why your allergist felt 25 pounds was too small? I will call the EMT. That is hard to believe some don't carry Epis. That is scary. I also didn't think to note the time when it happens. I probably won't remember though, but I hope I do! As for giving the second shot-my dd hasn't had a problem so far with breathing, just face swelling (which I quess if bad enough could cause her not to breath), hives, screaming and pulling (which I quess is because she itches?). I worry that since her weight is so small I could give her too much Epi and her heart could freak out. Yesterday her heart was racing like mad after the shot. Any thoughts? Today she still has a small rash. Does anyone else have a rash after the reaction that lasts very long? Kelly, I hope Spencer's rash goes away soon. Shan

On Jun 11, 1999

Shan, I just read through all these messages. You've been given a lot of great advice!! Our allergist told us that our son's reaction to the peanut skin test was so bad he considers it to be rare. We suspected the allergy at 15 months, and he was tested and confirmed at 18 months. Our allergist told us to give him the Epi/Benedryl even if we only SUSPECT that he ate something with peanuts. He said that waiting to see what kind of reaction he had would be a bad idea. Give the Epi/Bene, then head to the ER, give another Epi if the hospital is more than 15 mins. away. As far as I'm concerned, it's life and death, and waiting is death for my son. I recently took a child CPR class because I thought it might help. The technician told me that once the airway is swelled shut, CPR will not help. You cannot be TOO safe. My son cannot have a safe cookie that has touched an unsafe cookie, and he even reacts to the smell of peanuts. His first reaction was vomitting, and his second was vomitting and wheezing, and those were just after a tiny lick of peanut butter! He never showed any outward sign, such as hives. I have heard, and was told by the Dr. that each reaction gets worse. It is a frightening thing to have to deal with... again, don't ever think you're being TOO safe. There is no such thing!! About the rash, as I said, our son never got hives, but his reaction to the skin test was the size of a 50 cent piece, and it stayed on his back for at least a week. I was talking to someone about the whole situation just after we found out about it, and mentioned the epinephrine injection. This person told me that she had to use one before and that it made her shake all over - almost seisure-like. I'm glad she told me, because if that would happen without my knowing, I would probably freak out! Has anyone experienced this kind of reaction? We haven't had to use the Epi/Bene yet - Thank God!! Take care, Shan, and keep up with this site - it's wonderful!!

On Jun 11, 1999

Shan - To me the rash seems to last forever. SORRY! Of course it doesn't really it just seems that way because nothing I ever do seems to make it better except time.

Before we knew of Spencers terrible allergy to Eggs (and peanuts and soy), I would cook French Toast for my daughter and then touch him and cause a reaction. Because at first it was just a rash (and I was so inexperienced in this area of parenting) I never caught on that I was causing it to happen. The rash seemed to last for weeks and then I would make French Toast again and it would start all over.

I feel the pain in your e-mails over your decisions. I have done that to myself for three years over my daughters kidney problems and it has gotten me nothing but bad nerves and a stomach ache. Before she was born I would blaim myself by saying that surely I did something wrong during my pregnancy and then after she was born I only got harder on myself. You are a GREAT MOM and doing everything you can for your child.

Keep your chin up!

Kelly

On Jun 11, 1999

Hi Shan, I understand your dissapointment over the positive reaction. Our son had a negative CAP RAST (blood) test 2 years after his reactiona and positive skin test. Our allergist won't even consider oral challenge until two skin tests are completely negative. Our hopes were way up and then he reacted to the second skin test. We have been told to give the Epi, benadryl and prelone (steroid) immediately if he ingests peanuts. You never know how long is too long to wait. We use Zyrtec for animal allergies but benadryl for food reaction. Our son doesn't seem to have any side effects from the Zyrtec and you only give one dose every 24 hours. I gave him the Epi once for a very mild reaction. He was absolutely fine, I however was a wreck. The major side effects of Epi affect adults more than children according to the drug insert, our Pedi and our allergist. We have been assured that it will do no harm to give it even if it's not needed. We have been told to repeat it after 15 minutes if the reaction is worsening. It's also important to have at least two epi pens on hand in case one malfunctions. Our son was prescribed the epi pen jr at 1 year old and I know several other people who have also been given them for children around 20 pounds. Good luck!

------------------ Valerie

On Jun 11, 1999

Hi Tammy and all,

My son's skin test reaction was also off the charts according to our allergist (also about the size of a half dollar). We were told to give the benadryl/epipen combination when suspected pnt ingestion has incurred.

As far as the fear of reaction from the epinephrine, I will tell you that my son who was fifteen months old at the time received two epinephrine injections in about a one hour time frame during his first and only exposure, and I did not notice ANY adverse side affects. Based on this experience, I will not hesitate nor be afraid to administer the epi when I need to.

Good luck and Stay Safe

On Jun 12, 1999

Thanks Valerie and Debbie. You both gave me info that I needed. Shan [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

On Jun 14, 1999

Shan:

I just want to add one more comment. The epipen may hurt a little bit to give her, but it has no major side effects and will not actually hurt her long term. No hospital is going to criticize you or reject you for taking a child with a known anaphylactic allergy to emergency for observation after an exposure to peanuts - but if you don't use the epipen and decide to wait and see how bad the reaction is it may end up being too late! Because of this, I have decided that with my daughter if she does not eat peanuts but touches them I will try using benadryl but have the epipen ready and still go the emergency. If she actually eats or licks anything she gets the epipen and goes to emergency. I feel better taking her to a hospital so that if things get worse they can respond more quickly.

One more note - my daughter goes to daycare, and the policy for them is any exposure (even if it is just touch) and she gets the epipen and goes to emergency. I don't want them having to observe, wait and see how bad it gets, etc. It is easier to just say use the epipen and go to emegency. I use this rule for babysitters too.

Remember - you can't be too careful!

On Jun 17, 1999

Shan,

I haven't been using the computer for a while and I just read your post at parentsoup. And now I have read all these posts and I am crying too. Your poor baby.

Holly

ps for Kelly Morse I read your post where you mention using Benadryl several times a week. I live in England so please correct me if I have missunderstood but Benadryl is basically an antihistamine syrup right? I ask because a friend of mine recently visited their allergist and was told to save her daughter's Piriton (a UK brand pediatric anti-histamine) for serious reactions. The suggestion was that if it was used too often for minor reactions it would not be as effective in an emergency. I have not heard this anywhere else but I thought I should mention it.

On Jun 17, 1999

Hi Holly. I hope you and your family are doing well. We are doing OK now. My dd got her MedicAlert bracelet today and is doing fine. Thanks for your post.

I do have another question for everyone-the ped today told us after the EpiPen to call 911, but the allergist told us to just go the ER. We live about fifteen minutes away. Any thoughts?

On Jun 17, 1999

Benadryl acts faster than Zytrec. Zytrec is longer-acting than Benadryl. Give Benadryl first. These are two different drugs and you can use both at the same time but give Benadryl first ( it should act within 10-15 mintues, Zytrec takes up to 1 hour to act).

On Jun 18, 1999

Calling 911 is usually the fastest and safest way to get care. I was involved in a freak accident outside my house. I had two broken ribs and a punctured lung. My wife drove me to the hospital and it too about 15 minutes before I was seen. Had I arrived via ambulance, I would have bypassed the waiting room entirely and been seen immediatly.

On Jun 18, 1999

Shan, when I moved here, I called my local ambulance company and discussed whether they carried epi pens etc. The guy was great and asked where I lived and where she will go to school and proceeded to tell me how long it would take them to get to us. That helped and he also told me - and this is only because I live in a very small town, so don't take this advice- that 911 is actually slower here and to call rescue squad first. I think you should call- I would never have known to call rescue squad first and he made me feel comfortable knowing they can get to us immediately and are able to treat her.

On Jun 18, 1999

Hi Shan,

I'm glad to hear that you are doing a bit better. I'm posting a reply to your medic alert bracelet questions on the other board.

Holly

On Mar 25, 2003

Raising for some of the new members - this is good info about a false negative test result.

Stay safe

Sue in Sunny Arizona

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