Just back from allergist - happy, but terribly confused...

Posted on: Wed, 05/05/1999 - 9:02am
Shan's picture
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Joined: 04/05/1999 - 09:00

My 14 month old dd had her first round of skin tests done today. They tested her for eight things, including peanuts. They were all NEGATIVE! The allergist was in disbelief regarding the peanut result being negative, he said if he was in Vegas he would have lost everything! He said he thought she was going to have a strong reaction to it since her reaction to her PB&J sandwich a little over a month ago was so severe. It was even documented by the ped who saw her that same day. He said her symptoms were textbook. The only thing he can think of is that she might be allergic to a preservative. So what does this mean? Anyway, we are going back in a month for a food challenge. They will give her some peanut butter in the office and watch for a reaction to develop. I'm very happy with the results, but afraid of the unknown now. What caused her to have such bad hives and swelling? Also, she has had excema for weeks. He said that there usually aren't false negatives on skin tests. Is this true? I unfortunately threw out the jelly she ate that day because I was afraid it was contaminated by the peanut butter and now can't remember the brand. But, I remember the peanut butter and the bread she has since had again with no problem (Iron Kids). Has anyone had a false result on their skin test and then had to have a food challenge? Should I feel safe in thinking she is peanut allergy free and this was all just a fluke? Is anyone out there allergic to any preservatives? He says that she would have a better chance of outgrowing a preservative allergy than a peanut allergy. Also, that the MMR rash she had was totally separate from this reaction she had after she ate the PB&J. I just wish I knew what the cause of it was because I would hate to give her something and have her throat close up! I could really use some opinions. Thanks everyone. I'm really happy, but terribly confused...Shan

[This message has been edited by Shan (edited May 05, 1999).]

Posted on: Thu, 05/06/1999 - 7:22am
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Joined: 01/27/1999 - 09:00

Shan, I am very happy for you. I am curious as to what a RAST result would show. I have had two Rast tests done within 2 months and they were very different although both very high. I would also be concerned about an oral challenge. I cannot give you any advice on that, but I did want to tell you about something I just read today. They now think that vaccine reactions could be a result from the gelatin in the vaccine and not the egg. Doesn't some jellys have gelatin??? Just a thought. Maybe there is a connection there. Good luck.
Patti

Posted on: Fri, 05/07/1999 - 6:47am
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Joined: 02/01/1999 - 09:00

Hi Shan,
I thought I would quote you from the allergy book I use. The skin prick test "can be misleading. You can have a positive result to a skin-prick test without actually having any symptoms. You can also get a false negative reaction to something to which you are clearly allergic, particularly with foods. As a result, most doctors use skin prick tests as an aid to confirm a case history, not as a stand alone test"
In my eldest son's case we are hoping that his peanut and groundnut skin prick tests were false positives. He has severe allergies to egg and sesame and is growing out of (we hope!) a milk allergy. So a few less worries would be great! Our son has never consumed any kind of nuts and never had a reaction except in the test. He is going to be having a peanut and then a mixed nut food challenge test later this year so we can finally know one way or another.
I can shed some light on food challenge tests for you as James has undergone them for his milk and egg allergies. We live in England so the procedure here may be different.
He goes into hospital in the morning and has an intravenous line inserted in his hand with a tap thing on the end. (He puts on some anasethetic cream first so this doesn't hurt.) This gets all bandaged up. The line is incase they need to give him lots of meds in a hurry! They take baseline blood pressure and temperature measurements. And listen to his chest. Then a small amount of the allergen being tested is put on his forearm. Wait 20 minutes. Then a small bit is put on his cheek. Wait 20 minutes. Then a drop on his lips. Wait. Then 2.5 mls in the mouth. Wait. 5 mls. Wait and so on until the a cupful is drunk (in the case of milk). They take blood pressure and temperature measurements 5 minutes after each step and then I think 10 minutes later. And listen to his chest. A nurse and I watch him closely to see if he is reacting. A doctor is nearby incase something goes very wrong.
James has only got up to 5mls of milk before his blood pressure starts to fall. The good news is that there are signs that he is growing out of this allergy and we shall be going back this summer to check this.
The challenge tests are scarey - you feed your child something that may hurt them but our hospital takes every precaution and we really need to know if he has grown out of his milk allergy and if he really does have nut allergies. These are things none of the other tests can tell us for sure. Not even the blood tests.
So far for us the challenge tests have always been very depressing. I have always gone with the highest of hopes and left tearful. This year will be different I hope. I also really hope that it will be different for you too. You will be in my thoughts. Let me know what happens.
Good luck,
Holly

Posted on: Fri, 05/07/1999 - 12:49pm
Shan's picture
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Holly and EVERYONE? - YIKES Holly! I was told to just bring some peanut butter in and let her eat it in the office and see if there was a reaction. He said they could give her an epi-pen if needed. This sounds NOTHING like what your son went thru at the hospital. I've been really thinking about Patti's idea about the gelatin. She had a MMR and chicken pox vaccine on a Thursday and on Tuesday I gave her the infamous PB&J. Before she took her last bite she was screaming and covered in hives and all swelled up. It happened very fast. I just don't see how it couldn't have been from her sandwich. What I was wondering is if she was about to get a rash from her vaccine and when she had the jelly it was just too much for her system. About a week after this she had another rash all over her and they said it was probably from her MMR, it looked different from her PB&J hives. I called the ped today to ask if gelatin was in her vaccine and all they could tell me was eggs (no help) and I also called a jelly company and all they could tell me was the fruit pectin holds the jelly together-could this be a gelatin? They didn't know. I won't rest until I find out what caused her to swell up. Everyone wants me to forget it, but I'm worried it might happen again...

Posted on: Fri, 05/07/1999 - 3:09pm
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Sue
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Joined: 02/13/1999 - 09:00

Shan,
I would trust your instinct on the peanut butter reaction. Before I would consider letting a doctor feed our daughter any peanut butter, I would make sure it was in the hospital with an emergency team ready.
Our little girl only ate a small amount (about the size of a green pea) of peanut butter the first time she reacted. She had hives and severe swelling, and this started happening about a minute after she ate the peanut butter.
About two months later, my sister convinced me that I should see if our daughter had any reaction to the peanut butter from skin contact. Sooooo, I put some peanut butter (about a third the size of a green pea) on the inside of her arm at the bend (the area where they usually take the blood for a blood test). It was less than a minute when her arm turned red. About two minutes and her arm had a rash. About three minutes when real BLISTERS started popping up.
I washed her arm right away and gave her benadryl. It really scared me to see this happening so rapidly. All I could think of was, if skin contact with peanut butter is this bad and happens this fast on the outside, what will peanut butter do to her on the inside (ingestion)? Of course now I know what it does - it is life threatening for our daughter.
Ask the doctor why he doesn't order the RAST before wanting to feed your child peanut butter - it just seems too scary for me.
Maybe you should get a second opinion before letting her eat th peanut butter. I called a few allergists about our daughter's peanut allergy and a couple of then said they would not do a skin / prick test on a suspected peanut allergy. They would order a RAST test.
Sue in Sunny Arizona

Posted on: Fri, 05/07/1999 - 3:26pm
Shan's picture
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Joined: 04/05/1999 - 09:00

Thanks Sue for your comments. I'm thinking about calling the allergist on Monday and talking with him. I'm so confused and frustrated right now. I'm scared to death I might accidentely give my dd something that is going to make her swell again. Everyone is so nonchalant about it now that her skin test came back negative. It's like the whole thing never happened, but it did. I'm so sick of talking with doctors that don't have a clue!!! UGH!!! Can you tell I'm frustrated everyone? LOL

Posted on: Sat, 05/08/1999 - 6:46am
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Joined: 02/01/1999 - 09:00

Hi Shan,
I've looked up one of my cookery books to find out the difference between gelatin and pectin.
Fruit pectin is found mostly in the seeds, skin and core of fruit. It is released when fruit is cooked to make jelly and jam. Gelatin is made from the bones and skin of animals. The book refers to commercial forms of both of these setting agents and my guess is that these too have to be unrelated.
I would go with your first instincts: if a major reaction happens while eating a pb&j sandwich, the most likely cause is the peanut butter whatever the skin prick test says. Doesn't the post on this site which gives a report on the last FAN conference refer to a very high level of false results with skin prick tests? I can't remember exactly, it was a long post and I think this bit was towards the end.
Good luck,
Holly

Posted on: Sat, 05/08/1999 - 7:34am
Shan's picture
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Thanks Holly for looking that up for me. I looked around on the internet last night and couldn't find anything. I'm taking the ingredient list for the jelly and peanut butter with me to the allergist at the next appointment. I think I might even call on Monday. It HAS to be something in one of those products. I remembered the brand I had. It was Smuckers apple jelly and Skippy smooth. The ingredient list on both of these products is small thankfully, so I would think it would be easier to pinpoint for an allergist (at least I hope!). It can't be the bread because she has had it a million times since. I'm wondering-can they skin test for anything? I wondered if they can skin test for the stuff on those two products? I also never got an epi-pen and my mom and I have been talking and feel we need one. It makes it even scarier that we don't know what to avoid. The allergist was like no peanut reaction-good-bye! I insisted on coming back so he said we could do the oral challege. All the docs seem to think the MMR reaction was totally separate. It just happened right around the same time. I thought it was interesting what Patti had brought up about the gelatin, though. Sorry to babble away everyone! Shan [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

Posted on: Sun, 05/09/1999 - 8:20am
Shan's picture
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Joined: 04/05/1999 - 09:00

Does anyone know anything about fruit pectin or rapeseed? I sat down and wrote down the list of ingredients to the apple jelly and peanut butter dd ate in the infamous sandwich. I went through our cupboard and matched the ingredients up to things she eats with no problem. The only two ingredients I couldn't find was fruit pectin (from the apple jelly) and hydrogenated vegetable oil rapeseed (from the peanut butter). The hives had to come from one of these two things I'm assuming, unless the skin test for peanuts that came back negative was false. I'm calling tomorrow in hopes they can skin test for these two things, but I'm not sure they can. I wonder if we might have to have two oral challenges-one for the jelly and the other for the peanut butter? I'm off in my never ending quest!!! Shan [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

Posted on: Sun, 05/09/1999 - 8:24am
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Joined: 02/02/1999 - 09:00

Hi all,
My son has only a had the skin prick test, and his reaction to peanut was huge. This was after an anyphylactic reaction a few months earlier. My allergist did not offer the RAST test. My question is, should I insist on the RAST or does the positive skin test along with the anyphylactic reaction guarantee that it was the peanut that caused the reaction?

Posted on: Sun, 05/09/1999 - 9:41am
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Joined: 02/01/1999 - 09:00

Hi
They cannot test for everything with skin pricks as they have to have the right protein for the test. Sometimes they can order rare allergens. Sometimes no one makes that particular allergen in the right form for the test.
From my understanding, fruit pectin will be every kind of jelly or jam or preserves. Has your daughter ever eaten any other kind of jelly?
Rapeseed is another word for canola (it is what we call it here in England). Hydrogenated vegetable oil is in a lot of processed foods. If your daughter was allergic to this you would expect her to be reacting lots and lots - unless of course she only eats your good home cooking! I think that although the hydrogenated vegetable oil said that it came from rapeseed, and you could not find any other products that said this, that is more likely because of poor labeling rather than it not being in it. I personally have never heard of someone being allergic to rapeseed/canola.
Good luck at the allergist tomorrow Shan!!
For D. Humphries: My understanding is that a positive skin prick test following a history of reacting to something, is a standard way of confirming an allergy. I would trust the doctors on this one! My sons had RAST tests done to see how severe their allergies are and to see if they seem to be changing severity. I have read here that some doctors consider a skin prick test too dangerous to give to people who have had a severe reaction to peanut and go straight for the RAST test to confirm the diagnosis of peanut allergy.
Holly

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