Questions to Ask the Allergist

Posted on: Sat, 02/06/1999 - 5:57am
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My husband and I are taking our 13 month old son to a new allergist (we weren't happy with the first one we visited).

Since learning of my child's peanut allergy, I've started compiling a list of questions to ask the new doctor. I haven't had time to completely search peanutallergy.com or other web sites, so I don't know if an "official" Frequesntly Asked Questions (FAQ) document exists or not. If someone knows, please send a pointer. I've seen a few documents which answer a couple of basic questions, but I want a *comprehensive* document, in the style of many of the USENET and other BBS FAQs.

At the end of this message, I'll list some of the more general questions I've got so far. If anyone has questions to recommend or things we should bring up with our new allergist, please let me know. I've learned that it's CRUCIAL to ask the right questions. And yes, I already know the "standard" answers to many of these questions (many of them are probably, "we don't know," and "it depends,") after reading these discussion groups, but I'm going to ask them anyway to get another professional's opinion.

Thank you!!

--Tracy

Questions to Ask the Allergist

If he has a reaction... do we treat with benedryl as a first course of action unless he can't breath? Or automatically treat with epinephrine, no matter what? What is our action plan?

Is epinephrine dangerous in any way? If so, in what way? What is the proper dosage for a 20 pound baby? Does the Epi-pen jr have too much dosage?

Is he sensitive enough that he cannot touch or smell peanuts?

Does anyone outgrow peanut allergies?

How common are peanut allergies? How many children have them? Are they increasing, in your opinion?

Are there any local support groups -- parents with children with peanut allergies? What local resources are available?

Soy allergy (my son has a slight soy allergy)... will it get worse? Will he grow out of it? Does more exposure mean more chance he'll have a serious permanent allergy? He had soy formula for at least 3 months and we didn't detect anything... Could soy exposure make his peanut allergy worse?

Can vomiting prevent a more severe reaction?

How accurate is the blood test to diagnose the allergy?

What does 5 out of 6 (on the blood test) mean? Does it mean more severe reactions, or more likelihood that he has the allergy or he's more sensitive than most people who are allergic to peanuts???

Do you know of other children with his severity? What have their reactions been like?

Is it possible he will have less severe reactions when he gets older? Or, do reactions get more severe each time? We've heard both...

How likely will he suffer a very severe or life threatening reaction? How many patients do you have that experience this often? How many of your patients have died? Why has this happened?

How is asthma related? (Does our child have asthma?) We have read that people are at more risk for a fatal reaction if they have asthma. Is this true?

If we can keep him away from peanuts and he doesn't have reactions, could his sensitivity decrease in time?

Have you heard of the vaccine that is being developed by Dr. Hugh Sampson and his team? How likely is this vaccine going to be available and work? When will it be available?

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Posted on: Mon, 03/01/1999 - 4:06am
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Carol,
I don't know about overall IgE level. Do you know what this level means? Please let me know if you find out anything (thanks).
My son has had 2 RAST tests in the space of a month (the first one they only tested for a few things).
His peanut score:
RAST Test 1: 2300 (level 5)
RAST Test 2: 2100 (Level 5)
I don't know if the fact that it went down 200 points is something to cheer about. Probably not since I was told that anything at that level is bad.
He also tested slightly for oats and almonds. But the doctor said he'll most likely grow out of it.
My son's eczema was much better because of the routine the doctor gave us on our last visit.
Anyway, I learned a couple of other things.
1) Vomiting when exposed is a BAD sign. There was a discussion elsewhere about vomiting perhaps being good because (the thinking was) it helped the body get rid of the offending allergen. No. It means that the body is producing so much histamine that the stomach is affected and throws it up. So it's bad -- you don't want to throw up because of the amount of histamine in your system!
2) The doctor was very seriuos about the allergy, but he used language like, "your son will have this allergy for a long time." I told him he was the first person to not say "the rest of his life." So basically, he *could* outgrow it, eventually. My current thinking is that perhaps the body becomes less sensitive if it's not exposed. I've seen other language floating around about people outgrowing the allergy after about 20 years of not being exposed.
3) My husband and I are going to have the RAST test done every year to compare results. My husband likes numbers, so he really wants to do this.
4)We took a babysitter with us which made a HUGE difference -- we were able to talk to the doctor without being interrupted every second.
5) The doctor is writing us a letter which explains the seriousness of our son's allergy -- we can give this letter to people to explain his condition.
6) The doctor explained (again to me) that any level is unpredictable... a level 2 person could have more serious reactions than a level 5 person. He said that level 5 was more likely to have a serious reaction.
7) Dr. said that our son is more likely to have asthma because he has eczema and allergies.
I think that's it.
--Tracy

Posted on: Mon, 03/01/1999 - 6:25am
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Tracy,
My son also had the severe eczema which is tied into this allergy problem. We took him to dermatologist as well as the allergist. We used the steroid creams as sparingly as possible and they did help clear up the big open sores on his head. Every crease on his body was also red and raw. What also seemed to help over time was to use only dye-free and perfume-free detergents on our wash and Basis soap for washing him and his hair. We did not use reg. shampoo on him until he was 3 years old. We also used Aveeno(or generic brand) oatmeal baths everyday on him and the Aveeno moisturizing lotion. By the time he was three we had the skin problem under control. At 5 1/2 years we still use basis soap and occasional skin lotion but that is all. I look at pictures of his babyhood and wonder how it felt to have his skin feel like that everyday. I hope these ideas help you with your child's eczema.

Posted on: Mon, 03/01/1999 - 1:28pm
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Janet,
Our allergist's recommended routine worked for our son's eczema, fortunately. He said to keep his skin as moist as possible and he prescribed Complex 15 (over-the-counter) at least twice a day. We also used some antihistamine for about a week, which helped. And we apply the steroid creme when needed. He only has rough spots on the creases in his ankle.
We also started using the dye-free, perfume-free detergent, but don't know if that's helping or not yet. Another allergist I talked to on the phone for 45 minutes recommended the following routine to rid house dustmites (always present and a common cause of eczema) when washing clothes... wash sheets, etc in the hottest water possible, use the dye-free/perfume-free/hypoallergenic/whatever detergent, but only use 1/2 the amount (she said they always tell you to use more than you need). She also recommended buying the liquid concentrate detergent, not the powder. Then she said to TRIPLE rinse. This is advice from a doctor who has done lots of research and written books about how chemicals compromise your immune system. I thought it was interesting and I've just started this washing routine with my son's clothes and sheets.
Thanks for letting us know what worked for you!
--Tracy

Posted on: Tue, 03/02/1999 - 5:47am
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Carol S. Mentioned something about soybeans & peanuts in the same family...my daughter was on soy for about a month due to colic and during that time she had severe acne type eczema all over her face & head. The soy didn't help with the colic so we again swtiched to Nutramigen (protein hydrosylate) formula and her face cleared up in days and the colic was reduced but never gone...it still doesn't seem to be and she is 8 months. Anyway - has anyone found out if the soyformula can sensitize kids to peanut allergies. Harley just had her first reaction and I am positively panic stricken & and looking for every bit of information I can find.
thanks

Posted on: Tue, 03/02/1999 - 6:19am
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Erica I can feel the panic in your voice and don't worry we are there for you. I am not an expert but I will tell you what I think I know. First when you say Harley had her first experience, was that an allergic reaction to peanuts?
I was also involved with that discussion on soy formula. I was concerned that my daughter was so high on her RAST test and as far as I ever knew she never had any exposures to peanuts prior to her reaction at 2 1/2. I wanted to check the label to make sure thare was no peanut protein in the formula. I did actually look at the can the other day and there is not. I believe you might be allergic to one or both, but they do not cause each other. They are in the same family. The legume family. She might have allergies to both soy and peanut. My first son was also on Similac then soy and then Nutramigen. He doesn't have peanut allergies or soy allergies or any food allergies anymore that I know of.
Also I don't know how old your daughter was when her skin was so bad. Is this your first baby? It might have been the soy formula causing it, but babies also have a condition at around 1 month where their skin breaks out as a result of left over hormones in their bodies. Some babies have it worse than others. My first son had it bad for a couple of months. I would really like to have more info so I can hopefully help you. Have you seen an allergist? Have yoiu joined the Food Allergy network? Write back soon.
Patti

Posted on: Tue, 03/02/1999 - 8:47pm
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Hi Patti -
Thanks for your other messages as well!
Harley was about 2.5 months old when her face broke out so badly. She is my second daughter. My first didn't have any of these problems, (she has had her own host of health problems though). Harley had large hives all over her face within 60 seconds of barely tasting a peanutbutter cookie at 8 months old.
I have written down a huge list of questions for the allergist - mostly from the information given on this bulletin board. I'm glad that others have posted the answers to the question they had asked so that I can hopefully anticipate some of the allergists answers and question anything that sounds really of base from what I have already learned.
Will let you know after her appointment what he said. In the meantime I am going to call the Food Allergy Network today.
Thanks again!
(I think some of my more hysterical fears are beginning to subside - I must be getting over the frist phase of the breakdown)
[img]http://client.ibboards.com/peanutallergy/smile.gif[/img]
Erica

Posted on: Wed, 03/03/1999 - 5:35am
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Erica,
Don't forget to give us feedback on your appointment with the allergist!
good luck.

Posted on: Mon, 03/08/1999 - 2:00pm
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My 4 year-old son has a peanut allergy and also suffers from asthma. My allergist has never mentioned the Epipen, but it sounds like I definitely need to get a couple. I was told to take peanut out of his diet for 2 weeks and then introduce it back in. I did that and it took three weeks to get his asthma back under control. If I had known an epipen existed, I could have done that and taken him to the emergency room instead. Maybe he wouldn't have had the asthma attacks for three weeks.
I have just found this website and I am so glad I have. Thanks to all of you for bringing this to my attention. It may very well save my son's life. Hopefully it won't come to that, but if it does I will be prepared as soon as I call the allergist in the morning.
One question I have that I cannot seem to find anywhere on the internet: Some products have hidden peanut proteins in their ingredients. What are their names? I have found that hydrolyzed vegetable protein can contain peanuts. My list also includes casein, livetin, mandelona, new nuts, and ground nuts. Are there any others I should look for on food labels?
Thanks so much
Mary

Posted on: Mon, 03/08/1999 - 3:14pm
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I tried posting a similar "breakdown like" post about a month ago, when we first found out (for certain) that our 9 month old was allergic to peanuts and mildly to soy, but was unable to at the time. As I read the messages above I feel as though I had already written! As I still want to continue nursing my son, I have been avoiding peanut and soy like the plague: when I first realized what I had to do, I could barely eat anything for fear of what it might contain, even if it said nothing we needed to avoid on the label. Now, I still have many questions, and even as I read the messages here I still feel extremely afraid, yet at other times I feel reassured. I can't possibly address all of what I've read, but I can discuss the allergist thing. My husband and I are not happy with the answers from the allergist we were referred to: we were given very little info. after the skin prick test being positive (3++) and when we called back with questions, he said hydrolyzed plant protein was okay, but not any of the nut or seed oil. (we were told to avoid all of these until 6 yrs. of age to avoid more allergies) He also said we did not need an epipen, but lucky for us I found this website and found someone else in my circle of friends whose son has peanut allergy. I cannot believe that so many allergists are ill informed, and it angers me: at a time in our lives when we need the most concise, up to date information and professional support, it only served to confuse us more. (we are going to ask for a referral to an allergist who specializes in food allergy, if any exist here.)
My heart also goes out to all of you who worry and feel so helpless due to this allergy. My son is just 10 months old now, and if each day was a gift before, it's even more so now. I am grateful that he is not fighting a fatal disease, but I'm not sure that this allergy can be dismissed so easily - perhaps that's part of the problem, it's "just" an allergy to some. I feel stronger now that I'm armed with information and am finding it easier to cook from scratch, but I have my moments of weakness and upset. Thank goodness for this website.
carolynn

Posted on: Tue, 03/09/1999 - 6:07am
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Tracy,
Your visit sounded alot like ours. My son's results on the RAST test is as follows:
Immunoglobulin E 150 H U/ML <12
Peanut (F13) IGE 87.00 H KU/L
5114 H % Level 5 (a high level 5).
My son's allergist also gave us a form with Eric's name on it signed by him giving instructions for preschools etc. He also said that they have had cases of some kids outgrowning it. I'm not holding my breath but a little hope never hurt I guess. We had planned on having my son take the RAST test again in three years. I noticed that you said you were going to do it every year. Did your allergist recommend that? I might do that, it was just that my son's regular doctor had suggested waiting three. I find it very interesting and hopeful for you that your son's results went down. I not sure of your time between the two tests. I wonder could you take the test one day and the next and get a different result? I would like to learn more how this test works. Do you have any information on the test?
Good luck,
Carol

Posted on: Tue, 03/09/1999 - 7:46am
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Hi everyone,
I am glad to know that I am not alone in the worry department, especially late at night! That is when the most irrational fears take over. My son was colicky while I breastfed him (only 3 months) and then was a different child 3 days after starting on soy formula. I should mention I ate peanut butter quite a bit. I actually tried a milk formula first but he threw that up. We later found out he had allergies to dairy, citrus, strawberries and the biggest and baddest, peanuts. I am thankful he can have soy because it is in so much and he still drinks the soy formula and he is 3 years and 3 months old. He does have a slight degree of asthma but it is brought on by respiratory viruses rather than by food. He has done so much better this year than last and has only had to use the nebulizer twice.
As far as testing goes, he has been to an allergist once who wanted to do the skin testing. He had just turned two and my husband and I decided to wait on that to see if he out grew any of them, plus we kept hearing about false positives. He did not suggest the Rast but I am going to request it next time. We are going to go in the next couple of months because I want a whole work up done before he starts 3 morning a week preschool next fall. I will get the skin test done then if my husband can agree on it. He thinks it's like torture, but I've been telling him that I have read on these boards that it is not that bad.
Also, my sister has a friend that has a son who is had several allergies, including peanut, and was tested at 5 or 6 years old and showed no allergies! I never quite believed this story because I had always heard that you don't lose the peanut allergy. Now that I am hearing it is a slim possibility, this story gives me hope because he was so young. I think I will ask my sister for her phone number so I can check out the facts myself.

Posted on: Tue, 03/09/1999 - 11:14am
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Two years ago when our son had his first reaction to peanut at 12 months, he had a positive skin test. A RAST test was not done at that time. Last week I asked if we could do the RAST test. I couldn't believe it when it came back negative. I understand you can get false negatives. Has anyone had this experience or heard anything about it? We are going to have the scratch test done Monday to see what that shows. If it is negative they will probably want to do a food challege (which scares me!). I will post what the results are. I'm trying so hard not to get my hopes up too high. I don't think I could ever feed him peanuts at this point even if he does test negative!
------------------
Valerie

Posted on: Tue, 03/09/1999 - 11:32am
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Hi all,
I think the area of skin testing versus RAST testing is one of the most confusing to me. While my son has only had the skin test and scored 20 + on the wiel, the allergist never completely explained this to me. Both he and the nurse immediately handed me the FAN information, and reinforced the Epipen usage to me. I get the idea that the skin test is less likely to cause false positives. Does anyone have a better take on this whole issue? Your responses would be much appreciated.

Posted on: Tue, 03/09/1999 - 12:51pm
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Carol,
I don't know much about the RAST test. My son tested at 2105 ASM % REF, whatever that means.... it says Class V on our sheet.
As for getting the test every year, that's what my husband, Mr. Numbers, wants to do. We'll probably get regular tests, maybe every year or every 3 years or so. It's hard to figure out what these numbers mean, or if we should factor in false positives, how often we should test, how much faith we should have in the results, etc. I'm interested in any and all information people have. The more I know, the more questions I know to ask!
Thanks for your insight!
--Tracy

Posted on: Tue, 03/09/1999 - 1:28pm
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Hi Everyone:
We went to the allergist last week. Our allergist did not do any testing this time. Our son just turned 5. His history is reaction to peanut butter at 8 months; extremely positive skin test reaction at 1 yr; extremely positive reaction to skin test at 3 yrs. He has had no other exposure or reaction to peanuts since the first and only one at 8 months.
Our allergist wants to do another skin test at 6 yrs old (next year) and see what the reaction is. If the reaction is still very positive, then he doesn't suggest the CAP RAST test. If there is no reaction to the skin test then he suggests the CAP RAST test.
His theory is that because Tanner had a reaction and subsequent skin tests have been positive, there is no need for the blood test as we know he has the allergy and the numbers would be of absolutely no use to us. In our son's case, only if the skin test is ever negative then he said that the blood test could help determine the severity of the allergy. If the CAP RAST test were to come back negative or extremely low and there was no skin reaction to the scratch test then he would suggest a food challenge in the emergency room. I don't think we could or would ever do the food challenge though.
Mark

Posted on: Wed, 03/10/1999 - 12:01am
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Here is a link to the FAN site under Questions and it explains the difference between the Prick Skin test and the Blood test or RAST test(6th title down on the page and which test is better:
[url="http://www.foodallergy.org:80/questions.html"]www.foodallergy.org:80/questions.html[/url]
I still get confused sometimes and for the newcomers, it might be helpful.
[This message has been edited by Connie (edited March 10, 1999).]

Posted on: Wed, 03/10/1999 - 10:38am
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Connie,
Thanks so much for this link. I feel much better about my son only having had the skin test. Looks like from his score, we can definetely tell that the Rast would not reveal much more.
Stay Safe

Posted on: Thu, 03/11/1999 - 4:13am
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It's so interesting to see what different allergiest do. Ours would not do a skin test because my "story" was very typical for an allergic reaction and she said there is a chance the skin test itself could lead to a very bad reaction. So, we just had the RAST test which came back "only" as a 2. My husband asks: "Does this mean that he's only a little bit allergic?" The answer: Absolutely not. It's not predictive at all of what kind of reaction he may or may not have to future peanut exposure. In the future, it could just mean that you have done a very good job of peanut avoidance. If you have it, you have it, and the numbers per se don't help at all (then why do they have that classification?)
My son's RAST retesting, done about 2 years after the first one, was also a 2. I probably won't request more RAST tests, at least for a while, because he surely won't be eating peanuts, no matter what the score is. Nancy

Posted on: Thu, 03/11/1999 - 7:18am
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I find it interesting (I mean confusing) that quite a few of the allergists people have seen are saying they won't do skin testing for pn because it could cause a dangerous reaction. And quite a few other allergists (including mine) do skin testing and say it is perfectly safe. Geez, what's up with that?!?!

Posted on: Thu, 03/11/1999 - 8:28am
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Nancy and everyone,
So why do they have classifications for the RAST test if it doesn't matter? My son test at a low 5, which is scary for us, but now it apears it's no more scary than your son's level 2. My allergist said that it's not a prediction of how severe his reactions will be. He said a level 2 could just as easily have a severe reaction.
--Tracy

Posted on: Fri, 03/12/1999 - 6:08am
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Everyone,
I just received a letter from our son's allergist. I thought you would be interested in parts of it.
He included a copy of his diagnoses that he sent to my son's pediatrician. It's longish, but there's a sentence under the "Treatment Plan and Recommendations" that I was particularly interested in:
"... I have recommended that he be kept off all peanut byproducts strictly for the next twelve months, at which time we will re-evaluate."
This gives me some hope that in his experience, some children grow out of the allergy. I don't have high hopes that could be quickly crushed, resulting in extreme depression that has to be treated in expensive therapy for 10 years, of course. I have the "maybe my son will be the 1-in-a-million-kid-to-outgrow-a-peanut-allergy, but probably not" hope.
The allergist also included a letter which we can give to people that provides information on our son's allergy. In it he says:
"In the event of an accidental ingestion of peanuts, a mild symptom such as rash or hives should be treated with Benadryl two to three teaspoons every three to four hours.
"A more severe reaction which involves any respiratory symptoms such as difficulty breathing, wheezing, shortness of breath, difficulty swallowing or general malaise and lethargy should be treated with an Epi-pen Jr. which has been prescribed. Immediate attention to an emergency facility should then be obtained."
This is consistent with what he told us in person about how to treat a reaction. Our son tested at a 5 (a low 5, not that it matters) on the RAST, so we've been telling people that he has a "severe" allergy. I have been confused about when to use the Epi-pen Jr... if we should always use it or just if he's having severe respiratory problems. When he had his first (and only) reaction, we gave him Benadryl and he was fine. I've been told that the next reaction, should he have another one (not on MY watch, thank you very much), may be much more severe.
--Tracy

Posted on: Fri, 03/12/1999 - 8:14am
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To Mary Muritishaw
The Food Allergy Network (FAN) [url="http://www.foodallergy.org"]http://www.foodallergy.org[/url] has cards to help you when your shopping ect. They list the follwing as foods that may contain peanuts: beer nuts, cold pressed peanut oil,mixed nuts, ground nuts,Nu-Nuts flavored nuts.
Foods that MAY indicate the presence of peanut protein:
African, Chinese, Indonisian, Thai, Vietnamese dishes, baked goods (pastries, cookies, ect.candy, chili, chocolate, egg rolls, hydrolyzed plant protein, hydrolysed vegt. protein, natural flavorings marzipan, nougat.
You listed casein as one to avoid. I thought that was one of the proteins that made up milk.
_

Posted on: Thu, 04/08/1999 - 3:26pm
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Hi Everyone! The day has finally come. It has been a long 3 month wait. Sean goes to the allergist today. I reviewed this post and would like to thank everyone who has contributed. I printed out questions to ask him. His pediatrician already did his RAST testing after his anaphylaxis reaction. We are going to discuss the MMR shot also. Sean is anaphylaxis to Peanuts and Eggs. I will update everyone after our visit. Again, THANK YOU ALL! [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

Posted on: Thu, 04/08/1999 - 11:53pm
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Anonymous (not verified)

Lynda,
GOOD LUCK!! Will be thinking of you and Sean!

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